ME/CFS and XMRV

A Picture of Health

2010-09-24T18:46:00.009+12:00

The purpose of this entry is to provide some microscopy images and diagrams generally of retroviruses, and more specifically of the XMRV retrovirus, as well as images of Murine Leukemia Viruses and infected animal cells. Please forgive the fact that some of the captions do not line up perfectly with the images, due to formatting difficulties.

Left: Diagram of retroviral replication process, retrieved 24 September 2010 from http://home.ncifcrf.gov/hivdrp/RCAS/replication.html

Left: Scanning electron micrograph of the surface of a mouse cell infected with murine leukemia virus, retrieved 24 September 2010 from http://encyclopedia2.thefreedictionary.com/animal+virus

Left: Retrovirus attached to cell wall, retrieved 24 September 2010 from http://www.unites.uqam.ca/biologie_moleculaire/recherche2.html

Left: Purified Friend Murine Leukemia Virus retrieved 24 September 2010 from http://www.virusmyth.com/aids/index/hivpictures.htm

Left: Murine leukemia virus released from infected cells. Retrieved 24 September 2010 from http://biochemistry.hs.columbia.edu/research/gerst_index.html

Left: MLV's responsible for causing cancers. Retrieved 24 September, 2010 from http://www.unites.uqam.ca/biologie_moleculaire/recherche2.html

Left: XMRV Nodules. Retrieved 24 September from http://healthmattershow.com/xmrv-not-like-hiv/

Left: Retrieved 24 September from http://www.sciencedaily.com/releases/2009/09/090907162310.htm

Left: Infected prostate tissue cells are shown in green. Retrieved 24 September from http://www.guardian.co.uk/commentisfree/2009/oct/09/chronic-fatigue-syndrome-xmrv-research

Left: XMRV. Retrieved 24 September from http://www.thelatestnews.in/xmrv-found-in-human-prostate-cancer-cells/18511.html

Left: A retrovirus invades a cell. Retrieved 24 September from http://scientistsnotebook.com/?tag=xmrv

Left: Virion. Retrieved 24 September from http://theiciexperience.blogspot.com/2009/11/xmrv-retrovirus-not-just-for-mecfs.html

Left: Transmission electron microscopy of XMRV. Retrieved 24 September fromhttp://www.bioscience.utah.edu/mb/mbFaculty/singh/singh.html

Left: XMRV, present in prostatic epithelium. Retrieved 24 September from http://www.flickr.com/photos/ajc1/3919177347/

Left: An electron micrograph shows the XMRV retrovrius in the blood of a patient with chronic fatigue syndrome. Retrieved 24 September fromhttp://www.wellsphere.com/chronic-fatigue-syndrome-article/cfs-cfids-me-link-to-xmrv-retrovirus-similar-to-hiv-htlv-and-leukaemia-viruses/873701. More images can be sourced from Google.com, by typing in XMRV or Murine Leukemia Virus.

'Day in the Life of ME' Awareness Feature

2010-09-23T19:17:00.003+12:00

The purpose of this blog entry is to introduce a new feature the blog is trialling, named A Day in the Life of ME. This area is designed for raising awareness of ME/CFS online. Stories, written by people with the disease from all over the world; will be published as regularly as they are submitted (within 24 hours). One of the main focuses will be on individuals activities of daily living and how these are affected/adapted/managed with regard to ME/CFS. Submissions are encouraged from individuals with ME/CFS as well as carers, significant others, friends, or medical practitioners (presented in the form of vignettes/case studies, with no identifying information).

Some points to consider for your submission:

What you did before you became sick with ME/CFS.
How long you've been sick with ME/CFS.
How ME/CFS affects you participating in your activities of daily living.
If you have family members who are also sick with ME/CFS, other autoimmune diseases, lymphomas, heart disease or Autism Spectrum Disorders
If you've tested positive for XMRV/MLV's, what does this mean for you?
What a cure would mean for you.

There are a number of ways in which this may pan out, it could remain a feature on this blog, or take on a life of it's own, depending on the response, of course. But for now, the feature will be located at the top right of this blog page. Remember, again, this is a public forum, once information is posted, cfsandxmrv.blogspot.com has no control over how that information is used, so keep yourself safe! Emails, addresses, last names, will not be published. Email your paragraph, (try to avoid it being too long, so as it fits in the feature space), to dayinthelifeofme@hotmail.com and lets help raise more awareness!

Stories are already beginning to come in, and I've decided to post the first one here, as it's quite long, but absolutely amazing, beautiful and touching.

A Day in the Life of ME, Amberlin.
1. Things were really going along quite nicely. Normal as normal can get at the very least and oftentimes I would say things were much better than normal. I particularly loved my dog when I was a child and we'd explore the dry yellowed hilltops behind my house together. Middle school was good. I had a best friend named Amber which was wonderfully uncanny. There really are few things in life that are as special as your best friend in 7th grade. That person knows absolutely everything about you and you do her and you never even are struck with the wondering if someone is going to be there to have your back or hear your story because you have a best friend who is all of that and more.
High school was mostly storybook. I was on the drill team and my boyfriend was the drum major not to mention an icon of apple pie. John Baker, with the blond hair, the blue eyes and the white picket fence to prove it. I got good grades, and school was easy enough.
College was amazing. I was surrounded by all of these incredible minds and kind hearts, silent snow falls and dance classes through the changing seasons. We took ice skating classes and camped in below freezing weather in the woods. Graduation came and then the exploration of career opportunities. I couldn't decide between doctor or dancer so I was doing a lot of both. I was in love with life.

2.It was one year after graduation when I was somehow approached by someone lugging behind them a hefty 2 foot by 2 foot box."I'm terribly sorry," I was informed,"but you will have to live in this box from now on."
While being very apologetic, this person made it absolutely clear that there were no other options. I left my backpack leaning up against a tree and stepped into the box. It was much too warm and much too small. I had to tuck my head down tightly for the lid to fit and then it was sealed, I was totally and completely sealed in. The disorientation was overwhelming. What was I doing in here? How was I going to make it to rehearsal and class? It was hot and I felt feverish. My legs and back began to cramp. The more I tried to move about, the more exhausted I became.
Slowly, I settled into a most fitful sleep. I'd had walking pneumonia previous to this life in a box and shortly after, my cough came back. I would cough all day and then through the night, my box a mess of robutussin and kleenex. I coughed so much I had to go to the emergency room. "Your rib is broken but there is not much we can do about that," is what the doctor told me. "As for the box, well, we don't address that sort of thing here."
I had no idea what that meant, except that I wasn't going to get any help. Meanwhile, living in this box wasn't what it sounds. It shuddered and shook like an angry beehive nearly all the time and had violent temperature fluctuations. I'd be sweating one moment and then visually turn blue with chill. It was as if it was tied to a roller coaster and I would cry out in pain from all of the diarrhea and nausea, which would, of course, just restart the coughing. My parents were horrifically concerned. Why was I in there and who was going to get me out? Nobody seemed to hear our desperate pleas for help. Other people pretended that there was no box. They'd invite me salsa dancing and then say, "Oh, you're still not feeling well? Call me when you're better then." My heart beat out the words loneliness and despair.
I tried to keep my spirits up. I'd draw on the walls and continued to roll my ankles 50 times in each direction every day, so that they wouldn't be too de-conditioned when I was out of there and ready to get back to dancing. My ankles were always my weak point. I stopped doing that after about four years.
I learned to knit and crochet, sew and paint. I became very sensitive to light, so I'd often turn off the lights and choreograph in my head. The studio in my mind was huge and softly lit by the sun. I was a stronger dancer in that studio than I had ever been in any other. I spent a lot of time there.
And that was how it was for me, pressed in a box that was slightly smaller than I was. I lived there for about 6 years with the medical diagnosis: cramped lifestyle syndrome, not otherwise specified. We were in and out the doors of hundreds of doctors, healers, shamans, anyone who claimed they could do anything, practically. I could hear the whispers as we left the doctor offices , "She really needs to try harder. Perhaps she's trying to get attention or needs to see a psychiatrist." The alternative healers were telling me things like, "I think you may be dying." I wasn't sure which was worse. I finally found a wonderful doctor who refused to give up. The first time I walked into her office she looked at me and said, "Good Lord, you are living in the tiniest box I have ever seen. You're not the only one, you know." I stared back at her, shocked. She tested me for everything. I did not test abnormal in any way, but my life was completely different in every way.

3.One day, there was the wheeze. It was around the 6 year mark that my marvelous doctor heard the tiniest of wheezes in my left lung. Off to the pulmonologist we went. He, too, noted the constraints of the box. "How is it that you are you surviving in there?" he asked. "I don't know if I am," I replied.
More tests. Finally, it came back that my lungs were as big as those of an Olympic swimmer, making my breathing tests look normal, but with the slightest contact with any kind of allergen, they would tighten up, hardly allowing me to breathe. Which allergens? The allergy doctor said that my entire back swelled up like a giant welt during the test. I was basically allergic to the planet, or at the very least, to most of California. I was put on the highest dosage of every allergy and asthma medication available.
Slower than a sloth, I began to feel a little more space in the box. I could untangle my legs just a bit and my brain didn't feel like it had quite so much lint in it all the time. I decided to take a class at a local graduate school. I would bring a pillow and curl up in the corner of the room. I often left class early or didn't go at all. If I got overtired the box would clamp down tight around me. My fever would soar and the pain and cramping were unbearable.
Over the next four years, the box gave me slowly enough space to work part-time, live on my own and take care of myself. I even started roller blading and jogging a bit. Jogging surprised me since I never liked to jog. So why did I do it? Because I could, and every time I did, it felt like a miracle was taking place. As long as I remained hyper-vigilant of the space I was allowed, I did all right. If I tried for more room, say a dance class or something, the box would shrink up and seal me in its cement cage. I learned the rules and ways of that box in such strategic detail, that I was able to travel alone, and so I did that, too. It wouldn't tolerate crossing time zones, so I traveled my skinny strip of the planet and learned Spanish, which was the gateway into the beautiful and bright world of Latin America. I fell in love with Ecuadorian food, the coast of Costa Rica, and even a Mexican man.

4.In 2007, 12 years after the kick off of my illness the relapse began. In the six years that I had been granted a bit more space, I had finished graduate school, bought a house, become a licensed therapist, was working in the schools and running a private practice. Perhaps, it was too much. Maybe it was the stress of moving. No one will ever know, but three weeks into working with the high school I called in sick and never went back. This time, the box shrunk in tighter than a shoe box.
I had migraines that spanned days on end. I couldn't tolerate and kind of sensory stimulus and so I lived in silent, painful, darkness. My mind was so clouded I couldn't remember which line was for my name on a check. Sometimes, I was too tired to pee or roll over. I had diarrhea for 18 months straight. I woke up every morning feeling that I had been electrocuted and beaten by clubs.
...I can't write anymore. The thought of it catches my breath. All I can say is that things got infinitely worse. Worse than anything I could ever have imagined. The hospital has become my second home, and the illness rages on in this body. We're too close to now at this point and I don't know how to write about now. Maybe in five years or so, I can tell that story. So, this is where I'll have to stop for the time being. I guess that what keeps the story short.

If you would like the opportunity to share you're story, please email dayinthelifeofme@hotmail.com.

I Hope You Dance fundraiser gala

2010-09-19T10:41:00.000+12:00

The Whittemore Peterson Institute's annual fundraiser gala, I Hope You Dance, was held on 10 September 2010. During this event, three new promotional videos for the Whittemore Peterson Institute were played for the audience.

Videos:

Video one
Video two
Video three

During the gala, Andrea Whittemore-Goad presented Heidi Dunlap Bauer with the title of Outstanding Patient Advocate. Heidi has done outstanding work over the past year in promoting awareness of ME/CFS, educating around the plight of patients worldwide, while maintaing family life and managing her own ME/CFS.

Here is a video of Heidi's moving acceptence sppeech (Thank-you to Jenni Saake).

Q&A from the First International XMRV Conference

2010-09-19T10:05:00.002+12:00

On the 07 and 08 of September 2010, the first international XMRV conference took place at the National Institutes of Health. Watching the conference Q&A videos (listed below), and reading the transcripts, one can feel the almost combatative tensions between the scientists who had identified a correlation between ME/CFS and XMRV, and those who argue that this potential link could be explained by murine contamination of the equipment used in the respective experiments.
The Q&A was moderated by Dr Jonathan Stoye, Virologist, whom didn't appear to have a great deal of control over the conference proceedings. Dr Stoyle did, however, verify Kirsten White's (Gilead Sciences) comment, which remains somewhat unanswered:

"My question is about the different clades of potentially human pathogenic XMRV’s. We heard about the X and the P, and I was hoping you could summarize, are there four we’re looking at, are there two, are there three, and what we should call them?'.

Mindy Kitei (of CFS Central) represented patients by asking more practical questions, such as when drug trials will commence; what drugs are likely candidates; and what sort of timeframe this may occur in. Mindy went on to challenge Dr Stoye later during the Q&A, suggesting that although it was understood drug trials were premature, scientists were seeking what they want to seek with regard to the absence of XMRV in certian experiements. Mindy continued, stating it was importat for scientists to 'really see things as they are and not how we want them to be'. Dr Coffin demonstrated why it was premature to begin drug trials, although it is something to work towards.

There was a tense exchange between Dr Mikovits (Whittemore Petersone Institute) and Dr (Proffessor) McClure (Imperial College in London), with Dr McClure disagreeing outright with Mikovitz, about finding positive samples in the UK. Dr Mikovitz responded:

"I had at least 50 positives right from the London area and many more besides that using the techniques that we validated in our paper and clinically and that have been used throughout this room.".

Dr McClure stated she was now 'happy' to recieve positive samples, transported via independent phlebotomy services.

For a more indepth discussion from someone who was present at the conference, please visit Mindy Kitei's blog entry XMRV Conference Recap at CFS Central (see links below).

Links:

CFS Central: XMRV Conference Recap

Transcript of Q&A held at the end of the first international XMRV workshop

Youtube videos of Q&A session:
(possibly not in order)

Video one
Video two
Video three
Video four
Video five
Video six
Video seven
Video eight
Video nine

Summary of Meeting with Patients and NIH Officials

2010-09-19T08:14:00.000+12:00

On the 07 September 2010, prior to the commencement of the First International Workshop on XMRV, nine people with ME/CFS, and their families, met with highly regarded officials from the National Institutes of Health. It appears that this is the first time such a meeting has taken place.

The officials from the NIH included:

Michael Gottesman, M.D. Dr Gottesman is the chief of NCI's Laboratory of Cell Biology and Director of the NIH Office of Intramural Research. Michael is known for identifying the human gene responsible for resistance of cancer cells to many of the most common anticancer drugs.

Paul Holtz, M.D. Dr Holtz is the chief of the Arthritis and Rheumatism Branch at NIH. Paul is interested in myositis and other muscle diseases, including Pompe Syndrome, which continues to dominate his interest.

Roland Owens, Ph.D Dr Owens is the Assistant Director of the NIH Office of Intramural Research and he is also chief of the Molecular Biology section in the Laboratory of Molecular and Cellular Biology in the National Institute of Diabetes and Digestive and Kidney Diseases at NIH. Dr. Owens is a co-inventor on two patents involving AAV gene therapy applications.

The meeting was organized by ME/CFS patient Robert Miller. Robert opened the session, which was originally scheduled for 30 minutes, but went for 1 hour, with his own testimony, which highlighted the two key issues which the majority of people with ME/CFS identify; the fostering of trust between patients and the medical community, and the need for more funding in the area of ME/CFS research.

During the question and answer period, Dr Gottesman explained that his department received 10% of the funding that was issued to the NIH. The Office of Intramural Research was where internal research within the NIH took place, and that the associated funding was used to complete what he termed as 'higher risk' research.

It was discussed how patients were already looking at options for antiretroviral treatment and were on these drugs due to desperation. Gottesman reiterated how dangerous it is for individuals to investigate and try antiretrovirals as clinical trials have yet to take place.

According to Rivika Solomon, who shared a transcript of the meeting, (link below), Patients and NIH officials plan to meet again in three months. If anyone has further information regarding this meeting, please don't hesitate to add comments, links or notes below.

Links:

Transcript/notes from the meeting

References:

Just Garcia Hill (2010). Owens, Roland, A., PhD. Retrieved 19 September 2010 from: http://jgh.hunter.cuny.edu/index.php/component/content/article/6-biographies/95-owens-roland-a-phd.html?directory=18

National Institutes of Health (2010). The NIH Almanac - Historical Data. Retrieved 19 September 2010 from: http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman

National Institute of Arthritis and Musculoskeletal and Skin Disease (2010). Branch Overview: Paul Holtz. Retrieved 19 September 2010 from: http://www.niams.nih.gov/Research/Ongoing_Research/Branch_Lab/report_individual.asp?id=569&Branch_LabID=25&email=plotzp

SUMMARY OF MEETING WITH NIH OFFICIALS AND CFS PATIENTS AND FAMILIES. SEPT 7, 2010. Retrieved 19 September 2010 from: http://www.facebook.com/notes.php?id=663314516&notes_tab=app_2347471856#!/notes/jan-laverick/summary-of-meeting-with-nih-officials-and-cfs-patients-and-families-sept-7-2010/152105768147060

Request for a post

2010-09-04T14:08:00.001+12:00

Thanks to those who have sent messages and emails through this morning; I didn't really think to post here, but I got a few requests, so I'll briefly note what I know, but I suggest people check Google or TVNZ, for more accurate information.

I live In Dunedin, New Zealand, almost 300 kilometers south of Christchurch. At 4.35 am this morning, we were awoken by a rather large (7.1 - downgraded from 7.4) magnitude earthquake (I was stuck in bed as it usually takes me half an hour to get up in the mornings, as my back and legs seize up - combination of ME and cerebral palsy) which seemed to go for about 10 minutes. TV says it went for closer to 15 minutes.

My father, step-family, best mates, Saul's extended family, all live around Chch, and are getting aftershocks every 20 minutes. A state of emergency was put in place just a wee while back. Up there, the Central Business District is closed and currently being evacuated with severe damage; water mains are busted, sewage pipes have ruptured in some towns and suburbs, roads have been badly damaged, as have houses, vehicles, businesses, some TV stations are not reporting, as they're buggered. Cell phone towers are on reserve battery, which is running low. Landlines and internet are down, and flooding in some suburbs from burst pipes. Massive cracks in the ground with parts of earth risen, or fallen, .

Many people are isolated in their own homes, but apparently welfare stations are being set up in the suburbs. The imminent concerns are water safety (due to sewage etc) and infrastructure stability. There are only a couple of people with serious injury, and no reported fatalities. Watching the news, all the support services look to be working really smoothly together, there doesn't appear to be anyone panicking; and the news isn't being sensationalist or anything.

Thanks again for people concern, our thoughts are with those in and around Christchuch.

Not just XMRV anymore.

2010-08-30T20:05:00.005+12:00

In October, 2009, a paper by Lombardi, V., et al., ‘Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome’ was published in a leading research journal, ‘Science’. This paper demonstrated evidence that a Murine Leukemia Virus (MLV) species, XMRV, was associated with ME/CFS in some (yet to be determined) manner, with the results showing the virus was present in 95% of CFS patient samples (Lombardi, V., et al., 2009). This study also found that the XMRV virus was present in 4% of the healthy control samples (Lombardi, V., et al., 2009).

In January 2010, a paper by a group of UK scientists, from both the Faculty of Medicine of the Imperial College and Department of Psychological Medicine, Institute of Psychiatry, Kings College, published findings that failed to identify any association between XMRV and ME/CFS (Earlwin, et al,. 2010). This paper, Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome, was published in the Public Library of Science, is discussed briefly in the blog entry dated 07 January 2010.

In February 2010, another study came out of the UK, which again failed to find an association between XMRV and ME/CFS. The findings of the Groom, H., et al (2010) paper, Absence of xenotropic murine leukemia virus-related virus in UK patients with chronic fatigue syndrome, were published in the journal Retrovirology. The results of this paper are discussed in the blog entries dated 20 February 2010 and 25 April, 2010.
In the Netherlands, Kupperfield, F., et al (2010), published ‘Prevalence of xenotropic murine leukemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort’ in the British Medical Journal. Again, this study failed to identify XMRV in the CFS samples used in the research (Kupperfield, F., et al. 2010).

Increasingly, during the period of time since the publication of the Lombardi, V., et al., (2009) paper, patients, families, carers, medical professionals, researchers, have debated the possibilities for such conflicting results. Judy Mikovits at the WPI, stated that XMRV was notoriously hard to find, stating that the virus is
'...in too low a copy number in the genomic DNA (that is the provirus..integrated into the cells DNA) ..there may be less than 10 copies of provirus in 10 million cells..so unless you amplify the 1 microgram of genomic DNA from uncultured cells you might miss it' (Johnson, C., 2010).

Further to this, press releases from the Whittemore Peterson Institute detailed differences in the way the experiments were carried out which demonstrated why these studies were not true replications of the Lombardi, V., et al., (2009) study. The Whittemore Peterson Institute sent a letter specifically to Dr Myra McClure, of the Earlwin, O., et al (2010) paper, suggesting that differing techniques and equipment were being used, as well as ME/CFS sample cohorts defined by criteria different to that which the Whittemore Peterson Institute used. A discussion of this is available in the blog entry posted 20 Feburary, 2010.

On the 22 of June, 2010, a press release was published which stated that a combined team of scientists from the Food and Drug Administration, (FDA) and the National Institutes of Health, (NIH), had completed a replication of the Lombardi, V., et al., (2009) study, which not only confirmed the original findings, but expanded on them. It was soon announced, however, that due to conflicting results with a paper published by the CDC, a halt was placed on the Lo, S., et al (2010) publication. Again, debate about the studies was further fuelled by involved parties; researchers, patients, doctors, and support organisations.

At 7am, New Zealand time, on August 24, the press embargo was lifted, and the Lo, S., et al (2010) paper was finally available online.

Lo, S., et al (2010) used 37 whole-blood and serum samples which had been collected from individuals with ME/CFS in the mid 1990's. Lo, S., et al (2010) also obtained repeat blood samples from 12 of the initial 37 patients; 4 of which were collected two years after the first samples were taken, and the remaining 8 were collected again in 2010. Alongside this, blood samples were collected from 44 healthy controls. Lo, S., et al (2010) reported that they used nested PCR techniques to target the gag gene of any XMRV DNA sequences present, as well as other MLV-like DNA.

The results of the Lo, S., et al (2010) demonstrated that 32 of 37 (86.5%) samples from ME/CFS patients revealed positive amplification of MLV-like viral gene sequences in the nested PCR, compared with 3 of 44 (6.8%) volunteer blood donors. On testing of the 8 repeat samples collected in 2010, 7 remained positive, although all 8 reportedly remain symptomatic.

In reading the results and discussion of the Lo, S., et al (2010) paper, one thing becomes glaringly obvious. The results fail to report any specific findings of XMRV, that mouse virus variation which many people have taken great pains to undertsand over the past several months. Instead, Lo, S., et al (2010) reports finding MLV's, (Murine Leukemia Viruses), which are a genus of gamma retroviruses, of which, XMRV is a species. In fact, Lo, S., et al (2010) identified 4 variations of MLV's, not all of them xenotropic (warranting the XMRV label). Judy Mikovits reports presenting a paper at the Cold Spring Harbor RNA tumor virus meeting in May 2010 demonstrating samples in the Lombardi, V. et al (2009) paper had Xenotropic (as in XMRV) and polytropic MLV variants as well as at least one more variant. (Ketei, M., 2010). Furthermore, in comparing the 8 samples collected in 2010 with samples collected from the same 8 individuals with ME/CFS 15 years ago, it was apparent that the MLV had gone through significant mutation (Lo, S., et al. 2010). “That’s just what you’d expect from a retrovirus,” said Alter. “That’s more evidence that this is a real agent, not a sequence floating around in the lab.” (Ketei, M., 2010).

Aside from the different variations of MLV identified in the Lo, S., et al (2010) publication, is the startling evidence that almost 7% of the controls, all of whom are blood donors, tested positive for these MLV variants. This is indicative that these variations of MLV's are likely in the public blood supply, at least in the USA, where the samples were taken. Mindy Kitei, of CFS Central, reports that Harvey Alter is commencing studies to determine if the MLVs identified in the Lo, S., et al (2010) paper, are potentially transmitted by blood (Ketei, M., 2010).

It is important to state that at this stage, there is not sufficient evidence to suggest MLV's are causative or co-morbid pathologies to ME/CFS.

News of the publication of the long awaited Lo, S., et al (2010) paper spread quickly across the internet, with discussions, blog posts, news articles and opinions being printed and reprinted through social mediums such as facebook. It appears, however, that in some areas of the world, namely the UK, the news has been much slower off the press. Andrea Pring, writer and fellow ME/CFS patient, reports on her blog, Dancing with the Sandman, some of the contextual factors possibly contributing to the lack of news coverage in the UK, including the involvement of Professor Simon Wessley in the advisory panel of the Science Media Centre (Pring, A., 2010). For further detail on this, please read Andreas blog post titled 'The Truth Behind the Headlines (August 29, 2010).

I would now like to take this opportunity to print a public thank-you to all the researchers, medical professionals, advocates, organisations, carers, families and supporters who have worked tirelessly over the decades, in the search for explainations and answers to this illness. It is far from over; the exploration continues, but we can be graterful of the advance in knowledge of this disease that has been made in the past few months.

Specifically, I woould like to thank Annette and Andrea Whittemore; Annette, in her quest as a mother to give her daughter the opportunity of quality of life and improved health, has given hope of a greater quality of life and health to all sufferers of ME/CFS across the globe. And Andrea, in advocating for her own health, as well as advocating for the work of the Whittemore Peterson Institute, has given a voice to all ME/CFS patients, worldwide. For this, we thank you both.

References:

"Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy controls,"

Erlwein, O., Kaye, S., McClure, M., Weber, J., Wills, G., Collier, D, Wessely, S., and Cleare, A., (2010). Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. Retrieved 29 August 2010 from: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519.

Frank J M van Kuppeveld, Arjan S de Jong, Kjerstin H Lanke, Gerald W Verhaegh, Willem J G Melchers, Caroline M A Swanink, Gijs Bleijenberg, Mihai G Netea, Jochem M D Galama, & Jos W M van der Meer (2010). Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort British Medical Journal : 10.1136/bmj.c1018

Groom, H., Boucherit, v., Makinson, K., Randal, E., Baptista, S., Hagan, S., Gow, H., Mattes, F., Breuer, J., Kerr, J., Stoye, J., Bishop, K. (2010) Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology 7:10. Retrieved August 2010 from http://www.retrovirology.com/content/pdf/1742-4690-7-10.pdf

Johnson, C., (2010). A Different Kind of XMRV? Dr. Mikovits and Dr. Racaniello on XMRV. Retrieved August 2010 from http://www.forums.aboutmecfs.org/content.php?187-Dr-Mikovits-and-Dr-Racaniello-on-XMRV
Pring, A., (2010). Dancing with the Sandman: The Truth Behind the Headlines. Retrieved August 2010 from http://dancingwiththesandman.blogspot.com/2010/08/truth-behind-headlines.html

Switzer, W. M.; Jia, H.; Hohn, O.; Zheng, H.; Tang, S.; Shankar, A.; Bannert, N.; Simmons, G. et al. (2010). "Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States". Retrovirology 7 (1): 57. doi:10.1186/1742-4690-7-57. PMID 20594299.

Alter Paper

2010-08-27T08:04:00.000+12:00

I am unable to write the commentary on this that I am so desperate to post, however, here are some of the key links I've had a look at over the past few days.

I will return to this, as my health allows, and discuss it, as I've done previously. If only for my own and my families benefit.

Online version of the Alter, H., et al (2010) paper

WPI response to the Alter, H., (2010) paper

Judy Mikovits responds to the Alter, H., (2010) paper

Harvey Alter discusses the delay in publication of the NIH/FDA study

Mindy Keitel, via CFS Central, discusses the Alter, H., et al., (2010) paper

Pictorial demonstration of the MLV family, of which XMRV is only one genomic variation

I encourage people to contribute to this list, and to discuss their interpretations and what it means for them, for us and for the rest of the world.

There are challenges already with getting the news out about this finding, and suggest that if you live in an area where you don't feel there is adequate coverage of these groundbreaking findings, inform your local news agencies, educate your government representatives, print off copies of the paper and take it to your GP.

As I stated, I would like the opportunity to discuss this paper, specifically the science, and hopefully in a few days, the opportunity will arise. There are going to be all sorts of aspects to this scientific development, political, social, and historical. Not being from the UK or USA, I don't feel well enough informed to address some of these adequately on my own, so I do welcome any contributions, particularly in the political and historical areas.

The Grand Opening of the Whittemore Peterson Institute

2010-08-22T09:11:00.000+12:00

'As wonderful as these facilities are, and they are truly wonderful, whats really important is whats gong to happen in these facilities, what the people in those facilities will do when they break down barriers; when they discover new things that will make the health care of the state the nation and the world better'.

- Dr Milton Glick, President of the University of Nevada

Grand Opening of the Whittemore Peterson Institute

XMRV name change: the benefits and detriments.

2010-08-20T16:17:00.001+12:00

There is a blog entry dated 29 December 2009, which addresses, very briefly, the names ME, CFS, Post Viral Fatigue, and so forth. it is beneficial for people to have a read of that entry, and it's attached links, as a background to this entry. However, this entry discusses the proposed change from XMRV to HGRV, and HGRAD.

For the first time on this blog, apart from the blog entry about my personal story (dated 28 December, 2009), the information discussed will be somewhat more subjective than usual, because of the nature of the discussion, and my own interest and understanding of it. What is presented here, therefore, are my own opinions, and must be interpreted as only that. People will not always agree with each others opinions and views, no more so mine than anyone elses, but I do ask that people take time to read and understand the rationale behind such opinions, and use that to further develop their own ideas and values, whether in agreement or disagreement.

On 19 August 2010, a notice began circulating on ME/CFS websites and blogs from Rich Van Konynenburg, PhD, on behalf of Dr. Burrascano, MD, who attended the first official XMRV symposium of the Whittemore-Peterson Institute (Prohealth, 2010). The notice states firstly that a working group has been established to regularly meet and appraise the developments around what we are currently referring to as XMRV and it's association with ME/CFS. The notice goes on to report that a new name has been proposed for XMRV and it's association with ME/CFS, and this announcement is expected to be made at the NIH retroviral conference this September Institute (Prohealth, 2010). Reflecting on this, provides a good opportunity to reflect on the XMRV label, how it has been used, and the benefits, detriments of changing this.

XMRV or Xenotrophic Murine virus-Related Virus, has been been used in ME/CFS circles since the news broke in October 2009 that a possible link had been identified between it and ME/CFS. Before that, it had been identified in 2006 as potentially involved with both hereditary and spontaneous prostate cancer (Schlaberg R., et al. 2009). The name Xenotrophic Murine virus-Related Virus tells us that this virus that the WPI connected with ME/CFS in October 2009 is related to a retrovirus that originates from mice. It does not cause disease in it's original hosts (the mice), but once it is transferred to another species, say humans, and inserted into their DNA genome, it can code for a provirus, which causes either active or latent infection (Belshaw, R., et al. 2004). For further information on this replication process, have a look at the entry dated 28 December, 2009).

The new name proposed for what we are currently calling XMRV is Human Gamma Retrovirus (HGRV), and for the consequential symptoms and disease pathology, Human Gamma Retrovirus Associated Disease (HDRAD). This would suggest that the signs and symptoms people experience as a result of the infection, would be referred to as HGRAD. This would indicate, assuming that XMRV, or HGRV is causative to ME/CFS, that people who currently have a diagnosis of ME/CFS will therefore have a diagnosis of HGRAD, a disease process associated with the Human Gamma Retrovirus.

There are a number of thoughts and perspectives on this proposed change of name. Of course, it hasn't even been one year since the WPI announced their XMRV findings, people with ME/CFS are still getting used to the possible XMRV connection and label. This disease already has a number of different names attached to it, and to have yet another name added to the list, is going to cause confusion. Especially so because people have already started using the term XMRV for educational and promotional purposes. Another reason is that this is yet another opportunity for the CDC and the Wessley subscribers to to continue to deny that ME/CFS is pathophysiological disease process, and promote their CBT and GET therapies.

However, and this next part is my own opinion, feel free to challenge it. The label XMRV never differentiated between the infections that it had potentially been linked to; prostate cancer and ME/CFS. It fails to acknowledge this retrovirus as the first gamma retrovirus known to infect humans, which is the genus that differentiates it from HIV. In terms of a medically terminological label, HGRV, is a much more accurate informative and accurate label for the retrovirus known currently as XMRV. Yes, the retrovirus is still related to xenotropic murine virus, but that isn't clinically relevant in the infection process, or treatment of prostate cancer or ME/CFS.

HGRV highlights that this is a (the first) gamma retrovirus discovered that effects humans, and HGRAD allows the flexibility for it to be used to cover various disease processes caused by the retrovirus; namely prostate cancer and ME/CFS currently. There will need to be work done in terms of education and promotion that ME/CFS is one and the same as HGRAD for those who test positive for the disease. As we would for any new name given to the disease. People must to continue to advocate for acknowledgment from those organizations who have mistreated and misrepresented people with this illness, and ensure that a change of name does not negate it's history of management. In the meantime, we are still awaiting evidence of whether this retrovirus is causative of, or co-morbid to ME/CFS, evidence which hopefully will come out shortly in the form of a science paper published in the Journal of the Proceedings for the National Academy of Sciences.

References:

Belshaw, R; Pereira V; Katzourakis A; Talbot G; Paces J; Burt A; Tristem M. (). "Long-term reinfection of the human genome by endogenous retroviruses". P Natl Acad Sci USA

Van Konynenburg, R., (2010). WPI Symposium News: Propose Name XMRV be Changed to HGRV. Retrieved on 20 August, 2010 from http://www.prohealth.com/library/showarticle.cfm?libid=15543&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

Links:

Prohealth notice from Rich Van Konynenburg

The Echos of Silencing Science

2010-07-07T07:58:00.000+12:00

Science is beginning to verify the fact that my body isn't so well. That my DNA, and that of a couple of my family members, is possibly ravaged by a retrovirus. Politics is telling me that I needn't waste my time on such nonsense, and that this isn't an issue I should dwell upon.

On 06 July, a blog entry titled FDA/NIH Paper in Limbo; Patients Unite, authored by freelance science reporter Mindy Kitei on her blogsite CFS Central, (see link on right of screen), is published, suggesting that the NIH/FDA paper was in fact halted by high level government officials in the Department of Health and Human Services (Kitei, M., 2010).

Kitei. M., (2010), reports that Dr Steve Monroe of the High Consequence Pathogens and Pathology at the CDC stated that "When CDC, FDA, and NIH learned that separate studies had been conducted with differing results, a collective decision was made to try and account for these differences.”. Marcus, A. D., (2010) reported similarly on the halted papers, quoting editor-in-chief Kuan-Teh Jeang, of the journal Retrovirology, as saying "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," (Marcus, A. D., 2010).

Since then, however, it hes been reported by Kitei. M., (2010), that the CDC is responsible for halting the NIH/FDA Paper.   'Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study.' Kitei. M., (2010). Kitei. M., (2010) goes on to state that the FDA/NIH paper was in final proofs when it was halted.

This, no doubt, will cause much angst among the ME/CFS community of patients and advocates, as it had been leaked that the FDA/NIH paper had found a positive correlation between ME/CFS and XMRV, and further addressed the issue of public blood supply infection. The positive findings of the NIH/FDA paper will be some of the first which verify the findings of the Whittemore Peterson Institute.

I'm not sure about anyone else, but I prefer the sound of science, to politics.

References:

Kitei. M., (2010). FDA/NIH Paper in Limbo; Patients Unite. Retrieved 08 July 2010 from http://www.cfscentral.com/2010/07/fdanih-paper-in-limbo-patients-unite.html

Marcus, A D., (2010). Chronic Fatigue Link To Virus Disputed. Retrieved 05 July from http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

Marcus, A D., (2010). CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out.   Retrieved 05 July from http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

Science vs Silence

2010-07-05T21:35:00.001+12:00

The previous blog entry, dated 25 June, discussed a press release which indicated that a research team, headed by a Harvey Alter, a medical researcher, virologist, physician, and chief of the infectious disease centre at the National Institute of Health, had submitted for publication the results of a study into the incidence of XMRV in blood samples taken from individuals with ME/CFS. Dr Alter reportedly stated that the findings of this study, to be published in the journal Proceedings of the National Academy of Sciences of the USA (PNAS), reinforced the findings of the Whittmore Peterson Institute in identifying the Gammaretrovirus XMRV in blood samples of individuals with ME/CFS. For further detail about this release, refer to the previous blog entry.

Five days later, on 30 June, it was reported in several publications that the Centers for Disease Control had also completed a study into the incidence of XMRV in ME/CFS. Their results, however, failed to find XMRV in blood samples taken from individuals with 'Chronic Fatigue Syndrome'. Two different government agencies; two different results. So each publication, respectively, went on hold.

Ashley Truxon, media coordinator for the journal Proceedings of the National Academy of Sciences of the United States of America, (PNAS), stated that the paper submitted for publication by the FDA/NIH had been placed on hold, with no further comment (Marcus, A. D., 2010). Meanwhile, editor-in-chief Kuan-Teh Jeang, of the journal Retrovirology, stated that the paper submitted by the CDC had been through the peer-review process, and had been accepted for publication, however, Dr. Jeang received a call from the authors of the paper, requesting be held. "My understanding was HHS [Department of Health and Human Services] wanted to get it straightened out. Both reports are from different branches of the government," Dr. Jeang said (Marcus, A. D., 2010).

In the process of scientific discovery, publication of scientific results is an integral part of the scientific method. To be published, a paper must endure significant peer review, and provide substantial detail enabling the research to be repeated by independent researchers. The pursuit of scientific inquiry requires that research submitted for publication by a journal meets rigorous criteria, in order for it to be published, and a part of scientific record. As such, although it isn't unheard of for submissions to be halted after the peer-review process, it is highly unusual.

24 hours later, on 01 July, and the journal Retrovirology goes ahead with it's publishing of the Switzer, W. M., et al paper, 'Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States'. A discussion of this paper will be attempted in a future blog entry.

Meanwhile, we are left wondering what happened to the NIH/FDA paper. Kaiser. J., (2010) reports that the authors of the PNAS paper have decided it needs more work. NIH spokesperson John Burklow explained to Insider that the paper had been accepted by the journal PNAS, but Alter and his co-authors decided to "pull it back" and revise it in response to questions raised by reviewers (Kaiser. J., 2010). Harvey Alter of the NIH Clinical Center, Stated on 30 June "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy."

As of the printing of this blog entry, the NIH/FDA paper has yet to be published.

Again, a future blog entry will discuss the paper published by the CDC in the journal Retrovirology, however, in the meantime, I have included a link to a statement made by the Whittemore Peterson Institute in response to the reported findings. I have also added a link to a discussion written by Andrea Martell, of the Blue Ribbon Campaign for ME. Also included is a link to the facebook page, XMRV Press releases.

Links:

Science and Consensus, by Andrea Martell

WPI Statement regarding CDC study

XMRV Press Releases facebook page

References:

Kaiser. J., (2010). UPDATE: Journal Publishes CDC Paper Failing to Find Viral Link With Chronic Fatigue Syndrome. Retrieved 05 July from http://news.sciencemag.org/scienceinsider/2010/07/journal-publishes-cdc-paper.html?rss=1

Marcus, A D., (2010). Chronic Fatigue Link To Virus Disputed. Retrieved 05 July from http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj#articleTabs%3Darticle

Marcus, A D., (2010). CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out. Retrieved 05 July from http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out/

Vernon, S., (2010). Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper. Retrieved 05 July from http://www.forums.aboutmecfs.org/showthread.php?0&p=98116

The topography of scientific enquiry, Part Three

2010-06-25T15:09:00.005+12:00

"We (FDA & NIH) have independently confirmed the Lombardi group [which published the original Science paper] findings.” Harvey Alter, chief of the Infectious Disease Department, NIH.

“It’s what we’ve been waiting for" Annette Whittemore, of the Whittemore Peterson Institute.

The publication of a paper in the Journal 'Science', in October 2009, brought about an excited and hopeful response from ME/CFS patients worldwide - even here in New Zealand. Initial research, conducted at the Whittemore Peterson Institute, by a team of retrovirologists, indicated that a retrovirus, XMRV (Xenotropic Murine leukaemia virus-Related Virus) was present in initially 67% of ME/CFS patient blood samples. Subsequent studies by the same researchers, Lombardi, et al., eventually identified the virus in 95% of CFS patient samples. After decades of lack of treatment, no diagnostic criteria, and apathy and dismissal from the medical community, this was
the moment that few of us had dared to hope for.

In the past several months since the Lombardi, et al. paper was published, a number of supposed replication studies have been conducted which have challenged the findings of the WPI. As discussed in the previous blog entries titled 'Topography of scientific enquiry', and 'Topography of scientific enquiry - part two', in response to any new avenue of research, the scientific community has a responsibility to replicate and correlate the results, in order to validate the initial hypothesis and consequent findings. In this case, there was a responsibility to acquire a cohort of well-defined ME/CFS-positive blood samples, test them for XMRV, and establish if the WPI were plucking at straws, or had indeed really identified something big. This replication process requires an accurate understanding and implementation of the same techniques, protocols and procedures used by Lombardi, et al., and equally importantly, to have a motive towards understanding the medical mystery which is ME/CFS.

Right form the outset, the stakes have been high for everyone involved, careers have been built on the establishment of ME/CFS as a psychosomatism, or Neuralgia, plenty of money has been withheld in the form of benefits for those who cannot work, children have been sectioned, individuals have been put through detrimental graded exercise programs, and worst of all, lives have been lost. So when the initial, so-called replication study, published in PLoS, came back negative, it wasn't surprising to the patient/advocate community, nor did it contribute any further scientific insight, or hypothesis, to the understanding of ME/CFS. Instead, what has since followed in the past few months, has been a rather public controversy. Judy Mikovits, research scientist at WPI suggested that XMRV is unusually difficult to find, McClure, et al., responded that it was their belief that the discrepancies in their published findings indicated a different pathology of the disease in the UK, from that which was in the USA. It was suggested that the samples and/or equipment, used by the WPI was contaminated, WPI publicly offered to send some XMRV-positive samples to the UK, and so on and so on. Meanwhile, ME/CFS patients and advocacy groups, continued to wait, watch and hope.

As of 22 June, 2010, it seems that the exact thing we are waiting, watching and hoping for is about to be officially published. A press release, dated 22 June 2010, states that Harvey Alter, a medical researcher, virologist, physician, and chief of the infectious disease centre at the National Institute of Health, made a presentation on blood supply, in May 2010. Alter made a slide show presentation which addressed potential contamination of the blood supply, and protecting the supply from disease. The presentation was made in Zagreb, to select individuals, and included a slide that referred to the XMRV-CFS association as "extremely strong and likely true, despite the controversy" (Marcus, 2010). The slide went on to state that the connection between XMRV and ME/CFS “is very strong, but causality not proved.”. Furthermore, Alter and his research team estimate XMRV and related viruses to be present in three to seven percent of blood donors, in comparison to the four percent cited in the Lombardi, et al. paper. At the end of the slide, was the statement “We (FDA & NIH) have independently confirmed the Lombardi group [which published the original Science paper] findings.” (Marcus, 2010). A spokesperson for the NIH has confirmed the authenticity of this presentation, however, there has been no further formal comment or release from the NIH, and Alter himself has made no comment, except to confirm the paper containing this data is to be published soon.

References:

Marcus, A D., (2010). Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection? Retrieved on 25 June, 2010, from http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

Gendringen, N L (2010). Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'. Retrieved on 25 June, 2010, from http://www.mmdnewswire.com/xmrv-9040.html

Perry, S., (2010). An update on the chronic-fatigue-syndrome controversy. Retrieved on 25 June, 2010, from http://www.minnpost.com/healthblog/2010/06/24/19180/an_update_on_the_chronic-fatigue-syndrome_controversy

Links:

Dr. Harvey Alter's NIH profile:

Error Preceeds Truth

2010-04-25T14:16:00.001+12:00

'In all science, error precedes truth, and it is better that it goes first than last' Hugh Walpole

Previous blog entries over the past three or four months, both here and elsewhere, have called upon science to prevail in the endeavor to further identify and understand any correlation between XMRV and ME/CFS. The blog entry titled 'The Topography of Scientific Inquiry' and 'The Topography of Scientific Inquiry - Part 2' address the necessity of producing replication studies when a new scientific discovery is made, for the purposes of verification.

At this stage of the game, there continues to be dispute over the findings of the original paper published by scientists at the Whittemore Peterson Institute, National Cancer Institute and Cleavland Clinic. There is a lot at stake, after all. Money is always a factor, careers will potentially be made or destroyed in the research field, medical arena and even in the journalism profession, based on who covers the story and what bias they take. Insurance companies stand to increase payouts, and at the very center of the debate, the quality of life for those individuals who have a diagnosis of ME/CFS, could be set to improve. Dramatically.

In January 2010, in response to the initial study published by the Whittemore Peterson Institute, McClure, et al published research they had conducted which failed to replicate the results published by the Whittemore Peterson Institute. It has since, however, become increasingly apparent that the McClure et al study failed to replicate the initial Whittemore Peterson Institute study. This also appears true of two further studies, including one published in the Netherlands by Van Kuppeveld et al, which also published a failure to detect XMRV in individuals with a diagnosis of ME/CFS. Since these publications, the Whittemore Peterson Institute have produced press releases which suggest reasons why none of these studies can be deemed as replications, due to the use of different equipment, different procedures, different cohorts.

But what about if these UK studies did find evidence of XMRV in their ME/CFS cohorts?

'We would also like to report that WPI researchers have previously detected XMRV in

patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the

completion of their own studies, as they requested. We have email communication that

confirms both doctors were aware of these findings before publishing their negative

papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive

patient sample to determine if his testing procedures could in fact detect XMRV in a

positive blood sample before he published his paper. We wonder why these materials

were not used in his study which also failed to detect XMRV.'(Whittemore Peterson Institute, 2010).

'The negative studies were technically flawed in that their methods were demonstrated NOT to be capable

of detecting XMRV. Their patient populations likely did not satisfy CCC criteria and they looked only by PCR on genomic DNA the least sensitive way of detecting XMRV. To date none one has attempted to replicate our study. It is very clear that the prevalence of XMRV in UK is NOT ZERO and that XMRV has been detected in CFS patients in the UK. (Whittemore Peterson Institute, 2010).

Meanwhile, we are beginning to see the emergence of the initial findings of the Whittemore Peterson Institute into the mainstream.

We are now reading about bans being put in place on blood from donors who have or who have had diagnosis of ME/CFS. Please refer to the blog entry dated April 23 2010, 'A Question of Blood'.

A study published in the Journal of Virology, titled: Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs, indicates that the use of antiretroviral drugs such as Tenofovir, AZT and Raltegravir, currently used in the management of HIV, would possibly be effective against XMRV infection (Paprotka T, 2010).

The pharmacutical company, Glaxo Smith Kline, has announced that they are funding a replication study that will attempt to replicate the Whittemore Peterson Institute's XMRV findings. “Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from [patients diagnosed by] Hunter-Hopkins Center (Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association…” (Prohealth, 2010).

References:

Paprotka T, et al (2010). Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs. Retrieved 25 April 2010 from http://www.ncbi.nlm.nih.gov/pubmed/20335265

Prohealth (2010). Dr. Lapp’s News Re: New XMRV Study, ME/CFS Blood & Tissue Bank, Ampligen® Study. Retrieved 25 April 2010 from: http://www.prohealth.com/library/showarticle.cfm?libid=15255&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

Whittemore Peterson Institute (2010). Letter to McClure. Retrieved 25 April 2010 from http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

Whittemore Peterson Institute (2010). Q&A with Judy Mikovits. Retrieved 25 April 2010 http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf

A question of blood.

2010-04-23T11:19:00.001+12:00

It has been a while since the last blog entry, not due to lack of developments and newsworthy events in the ME/CFS and XMRV arena, however.

This month has so far seen the beginning stages of a reaction by public health officials to the Whittemore Peterson Institute research findings of October 2009, in which a retrovirus, XMRV, was identified as having a potential connection with the disease process of ME/CFS. Of course, many of us have since witnessed the follow up studies carried out in Europe which have failed to replicate these findings, however please see earlier blog entries regarding the reasons why these fail to contend as replication studies.

Up until this point, people with a diagnosis of ME/CFS have not faced great scrutiny, at least in New Zealand, with regards to donating blood. Granted, during an ME/CFS relapse, the majority of individuals, due to the symptoms of the disease, may choose, understandably, not to donate blood. Some may be advised by members of their respective medical team, not to give blood, on account of the potential further detriment to health and wellbeing.

This makes a lot of sense, because there is notable evidence to say that individuals with ME/CFS have a reduced circulating blood volume compared to healthy controls (Bell, s., 2000), which would obviously be further reduced by the donation of blood. Specifically, one of the signs associated with a diagnosis of ME/CFS, Postural Orthostatic Intolerance (low blood pressure upon transfer from lying to sitting, sitting to standing etc) would be further exacerbated by giving blood. Some individuals with ME/CFS have difficulty even with blood draws for testing, let alone a full donation. (Please refer to the Canadian consensus document, and the links at the end of this entry,for further information specific to Orthostatic Intolerance).

At the end of the day, despite the detriment to the health of these individuals, up until now, individuals who have, or who have had, a diagnosis of ME/CFS have not been rejected specifically for the purpose of public safety because of their illness status. This, we can now see, is beginning to change. In Canada, earlier this month, a lifetime ban was placed on any individual who had a past or present diagnosis of ME/CFS (Toronto Sun, April 07 2010). This was followed soon after by New Zealand (Stuff.co.nz, April 21), and blood donor policy is currently under review in Australia with regards to ME/CFS. These moves appear to have been instigated by the findings published in the Science Journal in October 2009, which identify a potential link between XMRV and ME/CFS.

At this stage, both Canadian and New Zealand authorities are stating that this is a precautionary measure, we still don't have that replication study of the the initial research conducted at the Whittemore Peterson Institute. However, if XMRV does have a role to play in ME/CFS, then the hypothesis of transmission of the retrovirus by the Whittemore Peterson Institute, is that 'XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. (It is not known whether XMRV is more easily transmitted than other human retroviruses).' Whittemore Peterson Institute, 2010.
It shall certainly be interesting to see if the moves made so far by both the Canadian and New Zealand Public Health authorities, begin a domino effect, and increased perseverance by the medical community to act on the findings of the Whittemore Peterson Institute, and follow up with some replication studies.

On another note, I am planning to write a blog entry on the letter sent by the Whittemore Peterson Institute addressing the McClure et al study, which failed to identify XMRV in individuals with ME/CFS. In the meantime, I have put a link up to the letter itself.

References:

Bell, S., 2000. Circulating Blood Volume in Chronic Fatigue Syndrome. Retrieved April 23 2010 from.http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm

Atkinson, K., 2010. Chronic Fatigue Donors face Rejection. Retrieved April 23 from: http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection

Spencer, C., 2010. Chronic Fatigue Sufferers Can't Give Blood. Retrieved April 23 from: http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325

Rose, D., (2010). Viral Link to Chronic Fatigue Sparks Blood Donor Review. Retrieved April 23 from: http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325

Links:

http://www.meresearch.org.uk/information/publications/standing.html

http://aboutmecfs.org/Rsrch/OITypes.aspx

http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

Topography of Scientific Inquiry, Part 2

2010-02-20T16:34:00.001+13:00

It may be beneficial for some to have a look at the blog entry dated 7th January, 2010, which was a short analysis of the study published in PLoS, and the requirement, within scientific endeavor, to replicate studies.

This blog entry, once again, is an update and discussion around the latest research paper regarding the presence of XMRV in individuals with ME/CFS to come our of the UK. The aim is to provide factual information about the study and the response from the WPI, who first iderntified XMRV in relation to ME/CFS. The purpose is to generate discussions around this disease process, to further educate others and to continue to promote awareness of this disease process.

Please feel free to use any of the referenced information provided here to engage in these discussions in visible forums, as we work together towards ensuring our families, friends, communities, and medical professionals of this disease process and the desperate need for further research.

The study:

The UK study, conducted by Groom, H., et al (Retrovirology, 2010) aimed at looking for evidence of XMRV in two UK cohorts, and comparing them to controls. There were 170 samples collected from individuals with chronic fatigue syndrome, and 395 control samples from individuals without the disease. The research looked for evidence of XMRV in these samples by either identifying the presence of viral nucleic acids of XMRV, using PCR techniques, or by identifying serological responses in the samples, using a virus neutralisation assay (Groom, H., et al 2010).

First of all, the research looked for evidence of the viruses genetic code in the samples using PCR (Polymerase Chain Reaction). PCR is a method of amplifying a sequence of DNA and then looking for the specific genetic code of XMRV. (There's an simplified example of PCR at http://learn.genetics.utah.edu/content/labs/pcr/ which demonstrates this process in terms that even I can understand!) The research then looked for serological responses in the samples, evidence of XMRV antibodies, which would indicate that the immune system had been activated by XMRV, and had rallied up specific antibodies to fight the virus.

The results:

The results of the study undertaken by Groom, H., et al (2010) failed to identify XMRV by PCR methods in any of the samples.

26/565 samples tested positive for serological activity in response to XMRV, however, according to Groom, H., et al (2010), 25 of these samples were from individuals in the control group. This means only one individual who had a diagnosis of CFS demonstrated neutralising activity towards the virus XMRV. In other words, that sample had antibodies which could target XMRV.

I say 'could' because most of the 26 samples which tested positive for these antibodies, also demonstrated the ability to nutralise the virus particle if it was wrapped in an alternative viral protien coat. So, remembering that a virus is a length of viral DNA wrapped in a protien coat, when the researchers changed that usual protien coat on the virus to a protien coat from a different virus, the samples continued to show a neutralising serelogical response. This may indicate that another virus could have elicited these responses, and thus the antibodies residing in these samples were not necessarily responding to the XMRV.

There was detection of a serological response in 4 samples that was not elicited by a psuedotyped virus, meaning there were 4 samples which elicited a serological response to XMRV only

Conclusions:

The conclusions drawn by this research was that there may be a danger in getting accrate results from serological surveys, because the antiviral response to XMRV may also be elicited by other viruses.

One reason why this was deflating for many individuals hoping to see positive results, is because of the involvement of Dr Jonathan Kerr. One of the researchers involved in this research paper, is Dr Jonathan R Kerr BSc, MBBCh, MD, PhD, FRCPath. Dr Jonothan Kerr received his medical qualification from Queens University of Balfast in 1987, and in 1995, he completed his qualifications at a microbiologist, has worked as a microbiologist in Balfast, Mnachester, and London, where, in 2001, he became the consultant senior lecturer in Microbiology at the Imperial College, and in 2005 became the Clinical Senior Lecturer in Inflammation at St Gorges University (IACFS/ME, 2010). Dr Jonathan Kerr worked on a study of parvovirus B19 infection, demonstrating a percentage of cases had developed 'CFS' which lasted for several years, and subsequently became interested in 'Chronic Fatigue Syndrome' (IACFS/ME 2020). IACFS/ME (2010) reports that "he is now the principal investigator in a programme of research on CFS", and is is interested in the genetics of "CFS", and potential relationship with microbial infections.

A discussion of the study:

Of the study, Kate Bishop, one of the researchers, stated "We are confident that, although we were unable to replicate the detection, our PCR assay is more sensitive than the earlier method and possessed the necessary sensitivity to detect XMRV had it been present" (Redorbit, 2010). However, this study fails to provide detail to allow interpretation of how many white blood cells were analyzed, and as a result, this may have impacted the results. The Whittemore Peterson Institue, (2010), have stated that "Insufficient number of cells analyzed may result in failure to detect a low copy virus like XMRV, regardless of the sensitivity of the assay'

The Whittemore Peterson Institute (2010) also stated a difference in collection, preparation and storage of DNA. Neither this UK study, or that published in PLoS, had any data on blood harvesting, storage, or quantity of isolated cells, and technologies used. The research paper published in Science had used "PCR on nucleic acids from both un-stimulated and stimulated white blood cells; XMRV protein expression from stimulated white blood cells; they completed virus isolation on the LNCaP cell line; and a specific antibody response to XMRV" (Whittemore Peterson Institute, 2010). Furthermore, the Whittemore Peterson Institue, (2010), 'When using PCR alone, the Science authors found that four samples needed to be taken at different times from the same patient in order for XMRV to be detected by PCR in freshly isolated white blood cells. More importantly, detection methods other than PCR showed that patients whose blood lacks sufficient amount of XMRV detectable by PCR are actually infected'.

In conclusion, this study is not a replication study. Realistically, a replication study requires the same environmental conditions and technologies are used. The Whittemore Peterson Institue, (2010) have stated that they have provided information and reagents to research groups in different areas to assist accurate replication studies to occur, however, neither this study, or the one published bu PLoS, 'requested positive control blood, plasma or nucleic acids'. This demonstrates that there is still a need for direct replication studies to take place before any concrete statements about the corrolation between ME/CFS and XMRV (causative or coexistant) can be made.

References:

The Whittemore Peterson Institue (2010)., WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples. Retrieved Febuary 2010 from http://www.wpinstitute.org/news/news_current.html

IACFS/ME (2010)., IACFS/ME Board of Directors 2009. Retrieved Febuary 2010 from http://www.iacfsme.org/LeadershipoftheIACFSME/JonathanKerr/tabid/370/Default.aspx

Redorbit (2010)., Further Doubt Cast On Virus Link To Chronic Fatigue. Retrieved Febuary 2010 from http://www.redorbit.com/news/health/1823927/further_doubt_cast_on_virus_link_to_chronic_fatigue/

Groom, H., Boucherit, v., Makinson, K., Randal, E., Baptista, S., Hagan, S., Gow, H., Mattes, F., Breuer, J., Kerr, J., Stoye, J., Bishop, K. (2010) Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology 7:10. Retrieved Febuary 2010 from http://www.retrovirology.com/content/pdf/1742-4690-7-10.pdf

Post exertional malaise

2010-02-13T14:18:00.004+13:00

This is a revised blog entry. There was some ambiguity identified in the previous post, which I have aimed to address. Thank-you to each of those people who assisted with this, who have chosen not to identify themselves. I am most grateful for your support and assistance.

Post exertional malaise is a familiar to many individuals with ME/CFS, and for those who have had this disease for several years or longer, it is likely to be a facet of the disease which is very disabling. Some of us have learned to live within the confines of this symptom of ME/CFS, however it does pose many unseen limitations to how an individual may participate in their activities of daily living (housework, for example) personal activities of daily living (personal care).

Malaise is the term used by the Canadian Consensus Document to describe the onset of exacerbated signs and symptoms of ME/CFS, including cognitive function deterioration, and increased pain and fatigue. The term malaise is described in most literature as a vague feeling of general unwellness. Encyclopedia.com states that malaise is a 'medical term for a general condition of unease, discomfort, or weakness' (Retrieved 10 February 2010), and the Oxford Nurses Dictionary, (4th ed.), defines malaise as 'the general feeling of being unwell. The feeling may be accompanied by a feeling of physical discomfort, and may indicate the presence of disease' (McFerran, 1998).

Individuals with ME/CFS identify this 'malaise' as the onset of exacerbated signs and symptoms of the disease, following a period of physical or mental exertion. For individuals with ME/CFS, it is common for this feeling to follow active physical exertion, such as going for a walk, hanging out the washing, cooking a meal, etc. Post exertional malaise typically lasts 24 hours or more following an activity or exercise.

For the purposes of this post, I will be using the word activity, and delineating it from the word exercise. I will use the word 'activity' to describe the engagement of the body or the mind in tasks associated with daily living, as opposed to 'exercise'; the engagement of physical training to develop fitness and improve health. I will not be addressing exercise or aerobic training.

There are physical signs associated with the symptom of post exertional malaise, which can be demonstrated by comparing an individual with ME/CFS with a healthy individual after participating in physical activity. An individual without ME/CFS will often experience anti depressant effect as a result of physical activity. This is caused by the increase of oxygen-carrying blood to the whereas individuals with ME/CFS show a decrease in oxygen and blood to the brain, which contributes to the feeling of malaise (van de Sande, 2009). Individuals with ME/CFS demonstrate hypo-profusion of blood through particular areas of the brain, which means a decreased blood flow through the brain tissue, which is further decreased as a result of physical activity (van de Sande, 2009). This is the opposite of the effect of physical activity on the brain tissue of an individual who does not have ME/CFS (van de Sande, 2009). Body temperature normally increases with physical activity, however individuals with ME/CFS demonstrate a decreased body temperature after exercise (van de Sande, 2009). A table of this can be found on page four of the Canadian Consensus document.

A further effect of the decrease of blood circulation in the brain is the decrease of the effect of endorphins on how an individual feels after exercise. Endorphins are the body’s natural analgesics, (pain killers), which contribute to a increased sense of wellbeing in individuals without ME/CFS, after participating in physical exertion.

Although on average individuals with ME/CFS have an elevated resting heart rate, they typically demonstrate a significantly reduced heart rate when they are participating in an activity at their maximum workload. Individuals with ME/CFS also demonstrate 'an inability to reach the age-predicted target heart rates (van de Sande, 2009). Van de Sande, (2009), refers to a study completed by De Becker, et al (2000) which demonstrated that the maximum oxygen uptake and maximum workload attained by individuals with ME/CFS was approximately half that of sedentary controls. This could be attributed to autonomic dysfunction and/or heart dysfunction, which means that it is advisable for individuals who have ME/CFS not to try to attain age-predicted heart rates(van de Sande, 2009). Other dysfunctions which are common for individuals with ME/CFS to experience after physical activity include impaired cognitive function, orthostatic intolerance and gait disturbance (van de Sande, 2009).

A dysfunction found in individuals with ME/CFS is Mitochondrial Myopathy. The National Institute of Neurological Disease and Stroke define mitochondrial myopathy as a neuromuscular disease ‘caused by damage to the mitochondria—small, energy-producing structures that serve as the cells' "power plants” (May 2007). Dr Cheney stated that in ME/CFS there is so much injury to the mitochondria that CFS could be called a mitochondrial disease (Seiverling, 2001). This does not mean that the individual does not have ME/CFS, but that mitochondrial dysfunction plays a role in the disease pathology. There is a link at the bottom of this blog entry which contains further information on mitochondrial myopathy, as discuss by Dr Cheney.

The following discussion on management techniques, which in some areas are used as part of generalized Cognitive Behaviour Therapeutic approaches. This blog aims to discuss these techniques in isolation from any CBT intervention, as techniques which need to be carried out with care and support from a well educated medical team. Again, the management techniques of pacing and grading will be discussed with regard to ADL’s and PADL’s, and not with reference to aerobic exercise programs. Please use this for information and education purposes only, and do not embark on any physical exertion program without medical advice and support.

For individuals with ME/CFS, the subject of physical exertion can be a very sensitive and difficult one to address. This is due to the nature of ME/CFS, where the disease is an exertional one (Lapp, 2006). There are small management techniques which individuals with ME/CFS may implement with support from a medical team, that can be used to help achieve activities. Needless to say, this requires much forethought and planning.

One of these managing techniques is grading. Grading is the SLOW building up of tolerance to a realistic activity which has a predefined end point from the outset. This end point is different for each individual. The endpoint at which grading an activity stops, is the point at which participating in an activity can occur without ill effect, or post exertional malaise. For example, an individual with ME/CFS might begin vacuuming for one minute every two days and build up to five or six minutes every two days before having a rest period.

It is important to note that this is not a treatment technique, and does not lead to remission of ME/CFS signs and symptoms. Over four weeks, Black, et al (2005) found that individuals with ME/CFS were able to increase their activity level, however, studies fatigue, muscle pain, and overall mood did not improve with increased activity. Black, et al., (2005) established from this that there is a limit to activity/exertion tolerance. This means that an individual with ME/CFS may build up from a period of one minute to a period of six minutes of vacuuming over four weeks. At six minutes on a good day, the activity is managed whilst still feeling a sense of wellbeing and absence of complete relapse, however this may remain the threshold, and any subsequent activity without a substantial rest period would tip the balance.

A good measure for a starting point of activity participation, is the amount of activity an individual with ME/CFS is able to tolerate on a bad day. For some individuals, the extent of this may be getting out of bed and going to the bathroom and returning to bed for a rest.

Pacing of activity is another management strategies, where an activity, say hanging out the washing, is broken up into manageable chunks. An example may be hanging out three towels (the heaviest items) and having a break (for some people five minutes, for some people thirty minutes). The next would be hanging up two or three pairs of jeans, break, sweaters, break, then the socks, break, and underwear (lightest of the washing), so that as the activity proceeds, less and less exertion is required as the fatigue and ‘malaise’ sets in.

In the absence of being able to participate in an activity, i.e., for individuals who are bed bound, some techniques which may be beneficial include active and passive stretching of joints through range of motion. Active stretching is the participation in a stretching activity independently; passive stretching requires that the individual is relaxed while someone moves each joint through a range of motion. Even rolling over in bed is a form of stretching.

In summary, individuals with ME/CFS should not view activity or exercise as a means by which they will recover. Exercise done without support from properly educated medical professionals can be dangerous. Instead, physical movement should be seen as an opportunity to avoid muscle atrophy and further weakness. This means, once again, individuals with ME/CFS are in a position where they may need to take on a role of education within their medical teams. I have included some resources below to assist with this.

References:

Black, CD., O’Connor, PJ and McCully, KK. Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dynamic Medicine, 2005, 4, 3. Retrieved February 2010 from http://www.dynamic-med.com/content/pdf/1476-5918-4-3.pdf

Hoh, D, 2002., Retrieved February 2010 Treatment at the Cheney Clinic. http://www.prohealth.com/me-cfs/library/showarticle.cfm?id=3278&t=CFIDS_FM

Van De Sande, M., 2003. Retrieved February 2010 from http://www.mefmaction.net/MECFSFM/Articles/Symptoms/PostExertionalMalaise/tabid/238/Default.aspx

Lapp, C (2006)., The Treatment of Chronic Fatigue Syndrome and Fibromyalgia Retrieved February 2010 from http://www.prohealth.com/library/showarticle.cfm?id=2926&t=CFIDS_FM

ME/CFS and Pregnancy

2010-02-03T22:18:00.002+13:00

ME/CFS and pregnancy

As with many of these blog entries, there is room for this to be added to, and it will be returned to from time to time, especially with advances in knowledge about XMRV, and it's potential contribution/co-morbidity to ME/CFS.

For many people, it is natural to grow up with aspirations of starting a family, and individuals with ME/CFS are no different in this respect. Taking into consideration that roughly 60% of individuals with ME/CFS are female, and that the average onset of ME/CFS is within the typical childbearing age, it is essential that individuals with ME/CFS (and, of course, those supporting them) are well informed and well prepared before proceeding with a pregnancy. Yes, pregnancy is a physical feat for the human body at the best of times, so there are added challenges to meet and overcome, but it is certainly possible.However, preparing for pregnancy for an individual with ME/CFS include many considerations which may not be issues for individuals without a ME/CFS diagnosis.

Up until this point, it has been suggested that there is no evidence of inheritance with ME/CFS, or that a diagnosis of ME/CFS in the mother would incur damage to the fetus. The recent findings of XMRV and it's potential contribution/co-morbidity to ME/CFS, however, XMRV is "thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air". (Whittemore Peterson Institute). The Whittemore Peterson Institute recommends that individuals speak with their physician about XMRV and what safety measures might minimize possible transmission of this retrovirus. (2010). It is integral to note at this stage that very little is currently known about XMRV, and as more is learned, knowledge and advice will be refined. It is essential to stress that if you have concerns, talk to your physician.

The decision to raise children is one that needs to be made by both the mother and father, and is not one that can be made overnight. There will be issues such as if the mother has ME/CFS, does she work, and if so, is it likely she will need to give up work early in the pregnancy? If the father has ME/CFS, how will he be able to support the mother during pregnancy? It is also wise to think in the medium term about whether it is likely one parent will be able to return to work, what needs to be addressed in terms of in-home maintenance (is it realistic to employ a cleaner), are there family and/or friends around who are able to help with some of the day to day tasks of family-hood? On the flip-side of this, not everything can be planned, some things will fall into place as and when they happen, and things will crop up that have not been considered.

In terms of preparing for pregnancy, including limiting alcohol and smoking, and getting a balanced diet, individuals with ME/CFS may also need to address any prescription medicines, herbal supplements or any other pharmacuticals they may be using. This must be done in consultation with the appropriate medical professional, and individuals should not stop taking any medicines without medical advice. Some discussions may need to take place around risks some medications may pose during pregnancy, and what alternatives may be available, or weighing up the risks and benefits. It is also an idea to begin discussing things such as pain management during the pregnancy and especially during birth.

With regards to conception, some considerations need to be taken into account. It is advised that some thought and planning goes into preparing to have sex, despite this sounding terribly unromantic! Because sexual intercourse involves a high degree of physical exertion, it may be necessary to plan for a substantial time to rest afterwards. Another issue to take into consideration is pain, and ensuring that the environment is set up to make things comfortable, with the use of pillows, cushions, and heating, ensuring the experience as enjoyable and pain free as possible. It is also worth thinking about what time of day an individual experiences the least pain and fatigue, and also (with forethought to giving birth), what seasons are well/not well tolerated, knowing that it's realistic to experience a 'crash' after pregnancy.

During the first trimester of pregnancy, dramatic hormone changes can cause high levels of fatigue and nausea. For some mothers-to-be, this will pass as they enter into the second trimester, whereas for others, it may last the full term of pregnancy. By the third trimester, and especially in the final weeks of pregnancy, is often the hardest part of pregnancy. There are extra demands on the body from an increasingly growing baby, and extra weight to carry around, which all contributes to higher levels of fatigue. It is important to rest as much as possible to help manage the physical fatigue, and prepare for giving birth. It may be beneficial to participate in pre natal classes and get advice on relaxation techniques to help the process of giving birth.

When the time does (finally) arrive for birth, mothers with ME/CFS will tire quickly in labor, and may experience an increased level of pain. It is important that mothers with ME/CFS have access to adequate pain relief, and kept well hydrated. 'According to Dr. Bateman, stress and exhaustion cause the autonomic nervous system in a CFS patient to become more dysregulated and "almost chaotic," precipitating the likelihood of relapse. Bateman advises measures like maintaining vascular volume with intravenous fluid and pain and stress reduction techniques during childbirth to help prevent or moderate this response' (
Again, it is beneficial to know and discuss pain management options well in advance of labour and to have a plan (though realizing that in emergency situations, events may have to deviate from the plan in some cases).

It is common for a relapse of ME/CFS symptoms to occur post partum. 'Dr. Klimas observed that her patients with CFS typically do well postpartum until 3 to 6 months after delivery, at which time a relapse in CFS symptoms typically occurs, and is oftentimes severe. Dr. Klimas hypothesizes that relapse at this time may be related to physiologic reduction in red cell mass and blood volume that increased in pregnancy, and/or to the cumulative stress of interrupted sleep and demands of caring for an infant' (2007, retrieved from http://www.medscape.com/viewarticle/576986_6). As with all ME/CFS relapses, early planning can help prepare the family for this occurrence. There are many practical steps which can be made to help minimize energy expenditure for individuals with ME/CFS caring for newborns and adjusting to a new addition to the family. These may include setting up the nursery with as many things in one place as possible, such as warm water in a thermos, and having a nappy bucket just outside the door, to minimize walking distance. If the house is two storied, have a changing table set up on both floors, and use a stool or chair when doing nappy changes, and have a comfortable chair next to the baby cot/bassinet for feeding times. Please feel free to comment or add to this post.

References:

Lapp C. Childbearing and CFIDS: Making a difficult decision. The CFIDS Chronicle. 2000;Summer.

Links:

Retrieved on 03/02/2010 from http://www.medscape.com/viewarticle/576986_6

Retrieved on 03/02/2010 from http://www.mecfsparents.org.uk/Pregnancy.htm

Retrieved on 03/02/2010 from http://www.zimbio.com/Fibromyalgia/articles/13/Sex+Chronic+Fatigue+Syndrome

Sleep dysfunction in ME/CFS

2010-01-27T19:33:00.000+13:00

Sleep is the regular cycle of unconciousness where an individual can be aroused by stimulation. It is characterized by the depression of cortical activity (Marieb, 2000), where our voluntary muscle activity is diminished (Macmillian Dictionary for Students). The functions of the brain stem, however, (resperation, temperature) continue during sleep (Marieb, 2000). The normal sleep cycle for humans is related to the 24 hour, day/night cycle, or circadian cycle.

Many of us associate sleep with dreaming, and an opportunity to rest our bodies after daily activity, but whilst we are unconscious, trekking in the land of Nod, the brain is rotating through four different stages of NREM (Non-Rapid Eye Movement) sleep, and the dream state of REM (Rapid Eye Movement) sleep. This sleep cycle cumulates in brainwave activity that uses more Oxygen than when we are awake (Marieb, 2000).

The NREM sleep is divided into four stages, vital signs gradualy decline as the individual passes through each stage, until stage four is met, where all muscles are relaxed and arousal is difficult. About 90 minutes after the first stage of sleep is met, the individual enters into REM sleep, where most dreaming occurs. REM sleep is characterised by the increase of vital signs, and though this is the most difficult satge of sleep to arouse from, waking during this stage of sleep is what allows individuals to, on occasion, remember their dreams. A typical nights sleep is the alternation between NREM and REM sleep (Marieb, 2000).

Sleep is important for a number of reasons, both proven and hypothesised. Sleep is a process which allows for growth and rejuvenation, rest and repair of individual cells, as well as whole systems, including the nervous system, the musculoskeletal system and the immune system. There appears to be a correlation between sleep and the white blood cell count (Zager et al. 2007).

Sleep is essential for maintaining health and wellbeing, for everybody, and especially so for individuals with ME/CFS, however, many individuals with ME/CFS appear to have a lot of difficulty with dysfunctional sleep and/or sleeping patterns.

The Canadian Consensus Document refers to research (Fischer, B. et al. 1997) that suggests individuals with ME/CFS have dysfuntional circadian rhythm (sleep associated with the day/night cycle), difficulty getting to sleep, frequent arousal, inability to reach the deeper stages of sleep.

Some of these sleep dysfunctions include the commone ones, such as insomnia, which is the difficulty of getting sleep despite overwhelming fatigue, being 'too tired to sleep'. Insomnia appears to increase during times of relapse. Hypersomnia may also occur, which is the excess of daytime sleepiness, which is not the result of lack of sleep, and may also cause prolonged periods of sleep and/or difficulty arousing from sleep. The Canadian Consensus Document also lists sleep dysfunctions including difficulty with sleep onset, fragmented sleep patterns, non-restoritive sleep, morning exhaustion, and vivid dreaming.

Maintaining healthy sleep patterns, therefore, is an important part of managing ME/CFS. There are a number of different treatments available for individuals to use to assist with healthy sleep, including pharmacutical or natural medicines. Pharmacutical and/or natural medicines will not be discussed in this blog, as these options must be addressed with advice from appropriate medical professionals. Alongside pharmacuticals, it is important for individuals with ME/CFS to learn and implement sleep hygiene.

Sleep hygiene can be defined as controlling "all behavioural and environmental factors that precede sleep and may interfere with sleep." (Van der Heijden, Kristiaan B. et al, 2006). In other words, sleep hygiene includes tasks that individuals can participate in to help improve sleep quality. These include:

Stay out of bed unless you are sleepy and intend to sleep. If your not ready to sleep, choose a quiet/relaxing activity such as listening to quiet music or browsing through a book.

Spend time out of bed as often as you are able during the day, try resting in the living room, or outside in the sun.

Get dressed when you get up, if you are able. Try to keep pyjamas for use in bed. Even getting changed into loose comfortable clothing similar to pyjamas helps to make a differetiation between being up and being in bed.

Make a regular time for geting up and going to bed.

Create an environment in the bedroom which is associated with sleep, keeping it quiet, dark, and a little bit cool. Avoid activities such as reading and watching tv in bed, if you are able to do these in another room.

Try to avoid worrying about getting to sleep, try to engage in relaxation techniques, and allow your body to relax.

Sweet dreams!

References:

Dr Bell article: http://www.davidsbell.com/PrintLynNewsV2N1.htm

American Academy of Sleep Medicine. 2009. http://www.sleepeducation.com/Hygiene.aspx. Retrieved 28 January 2010

Macmillan Dictionary for Students Macmillan, Pan Ltd. (1981), page 936

Zager, A., Andersen, M.L., Ruiz, F.S., Antunes, I.B., & Tufik, S. (2007). Effects of acute and chronic sleep loss on immune modulation of rats [Electronic version]. Regulatory, Integrative and Comparative Physiology, 293, R504-R509.

Marieb, E., (2001). Anatomy and physiology (5th ed.). pp 549 - 551. USA: Benjamin-Cummings pub co.

Van der Heijden, Kristiaan B. et al.: Sleep hygiene and actigraphically evaluated sleep characteristics in children with ADHD and chronic sleep onset insomnia. J. Sleep Res. (2006) 15, 55-62.

Dr Judy Mikovits' Presentation

2010-01-22T10:42:00.007+13:00

Dr Judy Mikovits, of the Whittemore Peterson Institute (http://www.wpinstitute.org/), is going to hold a two hour question and answer session, addressing the 2009 XMRV research findings of the WPI. This presentation will be on 22 January 2010, and will be hosted by Prohealth and the HHV-6 Foundation (see links below).

Dr Judy Mikovits is a cell biologist, virologist, and molecular biologist, and holds a PhD in Bochemistry. She has over 20 years experience at the National Cancer Institue. Over this time, she studied retroviral impacts on the immune system, which became an important contribution to the understanding of aspects of the disease process in HIV. She has also studied the immune response to numerous other retroviruses, including HIV, SIV, HTLVI, HERV, HHV6 and HHV8.
Dr Judy Mikovits later became the director of the Lab of Antiviral Drug Mechanisms, also at the National Cancer Institute, which worked towards identifying molecular targets, screening processes and theraputic interventions for malignancies associated with AIDS.
Dr. Mikovits has co-authored more than 40 peer-reviewed publications that address fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology. (WPI, 2010)

Of the upcoming XMRV presentation, Dr Jaudy Mikovits stated "I am looking forward to answering patients' questions regarding WPI's XMRV research while clarifying some of the public misconceptions surrounding our discoveries. I hope that by answering some of the patient's concerns I can bring clarity to this subject, while also reassuring everyone that we are continuing to move forward as we learn exciting new information on an almost daily basis." (WPI Press Release, 2010)
　
Details of the presentation:

The XMRV presentation will be held at:

1400 (2pm) Pacific Standard Time,
El Cabrillo Room,
Hotel Mar Monte
1111 E Cabrillo Blvd
Santa Barbara, CA
See map
Attending via the internet:

The live stream of the presentation can be found here. Adobe flash is required for the stream, which can be downloaded from here
　
Useful times for those tuning in from around the globe:

1400 (2pm) PST on Friday 22 January;
2200 (10pm) GMT on Friday 22nd January;
1700 (5pm) EST on Friday 22 January;
1000 (10am) New Zealand on Saturday 23 January

References

Whittemore Peterson Institue. (2010). Press Release: Dr. Mikovits of the Whittemore Peterson Institute to Host Live Q&A Session Regarding XMRV. Retrieved on 22 January, 2010 from: http://www.wpinstitute.org/news/docs/WPI_pressrel_012010.pdf

Whittemore Peterson Institue. (2010). Executive Staff. Retrieved on 22 January, 2010 from: http://www.wpinstitute.org/about/about_execboard.html

Links:

Prohealth article about Dr Judy Mikovitz's presentation

HHV-6 website

Fibromyalgia Signs and Symptoms

2010-01-20T18:10:00.005+13:00

I have spoken to a few people over the past couple of weeks about the possibility of writing with me in some posts so as to attempt to demonstrate a more comprehensive and in depth investigation into some of the topics which come up as a part of living despite ME/CFS.

In response to several requests for a bit of a discussion on Fibromyalgia Syndrome, (hereby referred to as FMS) I would like this opportunity to acknowledge Mardy Ross, a fellow Occupational Therapy Practitioner, and individual who also has experience with both ME/CFS and FMS, who has collaborated with me on this post. I have also added a link below to a website run by Mardy, named Lumigrate.com, which may be of interest to some people, and aims to equip individuals with the knowledge they require to be an active and central figure of their medical team. Us Occupational Therapists tend to be strong proponents of education and individual empowerment, regardless of whether we hail from Colorado, USA, or Dunedin New Zealand :)

This post is going to be a brief overview of FMS signs, symptoms, but this blog will return to FMS from time to time, most specifically in the near future to look at the potential impact of the recent XMRV findings by the Whittemore Peterson Institute, and how these may impact FMS, and to look at management strategies suggested by different FMS advocacy and education groups.

It is interesting to both compare and contrast FMS with ME/CFS as it is a comorbid disease that affects many individuals with ME/CFS, but also because there are a number of symptom similarities. There are different schools of thought as to whether FMS and ME/CFS are separate illnesses, however, this blog is going to address FMS as a separate condition to ME/CFS, with a different set of signs and symptoms. It would be helpful at this point to refer back to the post dated 03 January 2010 to the ME/CFS diagnostic criteria, as to rewrite them here may cause some confusion.

For the purposes of continuity, this post will refer to the Canadian Consensus Document of Clinical Guidelines for FMS (http://sacfs.asn.au/download/consensus_overview_fms.pdf ) to list some of the signs and symptoms ascribed to FMS. The reason that this post is referring to the Canadian Consensus Document of Clinical Guidelines for FMS, is that it provides an in depth and comprehensive understanding of Fibromyalgia which would be very beneficial for people who live despite FMS, as well as practitioners.

Some of the criteria for a diagnosis of FMS is adopted from the American College of Rheumatology 1990 Criteria, which can be found here: http://www.rheumatology.org/publications/classification/fibromyalgia/fibro.asp

Remember again, a sign is the objective, observable or measurable evidence of disease, and a symptom is the subjective experience of the individual.

Criteria for a diagnosis of FMS:

1. It is compulsory that there is a history of widespread pain. Widespread pain is 'global' pain which has occurred for no less than three months. Global pain means bilateral - both sides of the body and above and below the waistline, and the occurrence of what is called 'axial skeletal' pain. (your axial skeleton is your upper and lower spine). The pain may be burning, throbbing, sharp, deep, 'aching bones', shooting, searing or 'feeling bruised', cramping, stiffness, and headaches.
2. It is compulsory that there is pain on 'palpation' (when the physician applies pressure) at 11 or more of 18 tender point sites:

The Occiput (2 sites, left and right): at the base of the back of your head - just above and to the outside of where the top of the spine meets the skull
Low cervical (2 sites, left and right): towards the side of the neck in relation to the spine
Trapezius (2 sites, left and right): on each side of the spine about midway down the scapular (shoulder blade)
Supraspinatus (2 sites, left and right): at approximately the mid point above the scapula
Second rib (2 sites, left and right): Just below the clavicle (collarbone) at approximately the mid point
Lateral epicondyle (2 sites, left and right): the bony prominence of the wrist
Gluteal (2 sites, left and right): In the upper and outer areas of the bottom
Greater trochanter (2 sites, left and right): the bony prominence of the hip
Knee (2 sites, left and right): On the inner side of the knee

Please refer to page 2 of the Canadian Consensus Document of Clinical Guidelines for FMS (http://sacfs.asn.au/download/consensus_overview_fms.pdf ) for a diagram and further details of these sites.

3. Additional signs and symptoms which often present in FMS, but it is rare that they are ALL present.

There may be a presence of neurological manifestations; dysfunction involving muscles, asymmetry of musculo-skeletal structure, which may affect balance or gait; abnormal muscle twitching, muscular cramping, muscle weakness. Sensory overload phenomena also often occur
There is often a presence of neurocognitive manifestations; impaired concentration, impaired short term memory, difficulty multitasking, or easy distractibility.
There is a persistent, REACTIVE fatigue, which may impair physical and mental stamina, which often interferes with a patient’s ability to exercise.
Many people with FMS experience non refreshing sleep, awaking during the night, insomnia, restless leg syndrome.
There are also autonomic and/or neuroendocrine manifestations, such as cardiac arrhythmias, hypotension, vertigo, temperature instability and/or intolerance, respiratory disturbances, intestinal and bladder motility disturbances with or without irritable bowel or bladder dysfunction, dysmenorrhea, loss of adaptability and tolerance for stress, emotional flattening, lability, and/or reactive depression.

So what do we do with this information? As suggested in earlier blog entries, print off copies of this document and familiarise yourself with the parts that you think may affect you. As with ME/CFS, and all other diseases and disabilities, you are the key person in your medical team. There may also be a requirement for you to be a source of education to the medical professionals whom you have 'nominated' to work with you towards maintaining a level of health and wellbeing. As much as possible, try not to be a passive observer in your health management. Take a copy of this document with you next time you visit your doctor or medical professional and ask for an opportunity to discuss it. Ask your doctor to support you to draw up a plan of how you aim to manage this disease, with reference to some of the different areas discussed in the Canadian Consensus Document. This will provide you with a level of 'control' over symptom management and treatment, and allows you the opportunity to coordinate the different interventions you may choose to use, such as homeopathy or natropathy, physical therapy, orthodox medicine, and even dental care.
Please feel free to contact me if you have any suggestions, if you have something you want to see added to this blog, or, of course, changed. I am also looking for other people who may wish to write a bit here also (remember, all of us have different perspectives, expeiences or things we are interested in learning more about - unfortunatly, I don't always have the answers or the information!!). Also, share this blog, or the information within it (provided you reference resources appropriately). The more we can continue to educate ouselves and unite as a group of individuals promoting awareness of CFS/ME (and other invisible diseases), the closer we get to appropriate healthcare management and treatment.

http://sacfs.asn.au/download/consensus_overview_fms.pdf

http://www.rheumatology.org/publications/classification/fibromyalgia/fibro.asp

Maintaining Meaning and Identity

2010-01-13T21:17:00.002+13:00

A role is 'the behaviour expected of a person occupying a given status or social position ... Roles are governed by certain norms or expectations, but are also, to some extent, interpreted by the individuals playing them'. (O'Donnell, 1992)

All of us have roles, whether we are aware of it or not. We have roles that we are born into, like being a father, a sister, a cousin, a taxpayer. We have roles we may choose, such as that of a critic, a cosmology enthusiast, a blog-writer; and we have roles which describe our vocational lives, such as a psychiatrist, or a garbage man. All of these are different examples of our social roles. These roles that we each have contribute to our identities. (Hagadorn, 2000).

We all have them.

We are, after all, social creatures, right?

Well, having a diagnosis of ME/CFS can also become a role, and because of the physical and cognitive debilitation of this disease, it can be a role which overshadows some all of our previous roles. It can compromise our role as income-earner, a student of goodness-knows-what-ology, or as an avid fan of the 'X-Files' because we become a 'sick' person, a 'patient', and a 'sufferer'. All these are accurate terms and roles, and it can be very difficult to maintain a sense of self which doesn't, in some way, reflect the effects of ME/CFS. But these roles do not need to define our identities, and as difficult as it may sometimes be, it is important to strive for the things which our unique to us, whether they are our beliefs, interests or hobbies.

Individuals with ME/CFS may have limited resources to be able to participate in their previous roles, and although a change may a occur in an individuals roles when they become sick with this disease, it is important to try and maintain roles that are separate to ME/CFS, and an identity which is independent of sickness. Some roles may incorporate aspects of what we have learn from our illness, through advocacy, peer support, and information gathering and sharing, however individuals still maintain an identity which is not affected by ME/CFS, whether it is spirituality, relationships, belief systems, political interests, belonging to a club or group, a provider of care and attention to pets, a consumer of goods and services and many many more.
A vocational role can be attributed to any form of ac, paid or unpaid, as work can be defined as the engagement of mind, body and spirit in a productive manner. There may, therefore, be opportunities available to individuals with ME/CFS that provide productive engagement in 'work', even though it may not be the career path of our planning. This may include volunteering for half a day each week at a local library, or for a couple of hours a the local school. There are opportunities to work from home (Kielhofner, 1985), making phone calls on behalf of an organisation, writing monthly newsletters for the local church, writing a blog entry every few days, or caring for a neighbours pet while they are away, depending on your health and ability. These activities provide us with occupational roles (Kielhofner, 1985), and contribute to an identity outside of sickness. They may not be the high-flying jet-setting career we pinned our dreams upon, but the little things matter just as much. We don't always have to define ourselves by this disease.

Hagadorn, R (2000). Tools for Practise in Occupational Therapy; A Structured Approach to Core Skills and Processes. Churchill Livingstone. London.

Kielhofner, G (1985). A Model of Human Occupation; Theory and Application. Williams and Wilkins, Baltimore, USA.

Partnership

2010-01-10T18:26:00.004+13:00

In New Zealand, there is the code of Health and Disability Service Consumers Rights which outlines patients rights when accessing health care. This states that within New Zealand, every consumer has the right to:

Be treated with respect;
Be treated with freedom from discrimination, coercion, harassment and exploitation
Be treated with dignity and independence
Be treated with services of an appropriate standard
To receive effective communication
To be fully informed
To make informed choices
To have support
To the rights associated with teaching or research
To complain.
The HDC Code of Health and Disability Services Consumers Rights Regulation 1996, retrieved from http://www.hdc.org.nz/theact/theact-thecodeclause2

In this entry, I would like the opportunity to discuss the relationship between an individual with ME/CFS and their General Practitioner. I want to keep in mind this code of conduct, because this is a good comprehensive list of expectations that an individual can realistically have of the medical profession. More importantly, I want to address an aspect which isn't clearly described in this code, and that is partnership.

For all patients, but especially those with illnesses such as ME/CFS, It is very important to establish and foster a partnership of trust, honesty, and equality with your doctor. This may sound pretty simple and pretty obvious to many people, but, in my own opinion, I feel it is a subject which is essential to the accurate diagnosis and successful management of ME/CFS. It is not simply about having a doctor who regards, or 'believes' in ME/CFS as a disease with a physiological pathology. It is about having someone who you can trust, share information and questions with, and someone who will ensure you understand at all times your situation.

Of all the people we associate with, often the most intimate is that which is between a doctor and a patient (outside of close family, of course). We are expected to share details and participate in examinations which require us to put a lot of trust in the Dr we work with. We regard Dr's as having a greater knowledge of the function and dysfunction of the human body and systems, and we have a lot of trust in this knowledge. Rightly so, of course, with student's graduating medical schools with loans which would pay off my mortgage AND get me a trip to the Kennedy space centre.

However, we bring equal knowledge to this partnership ourselves. We know what our experiences are, we know what our histories have taught us. We know what has or hasn't worked in the past, we have expectations of what we want to achieve through this partnership and we are equal and active contributors to the investigations into our wellness.

We also know what sort of attributes in people that we are most responsive to; some of us are purely objective and require black and white factual information. Others of us need more fluid discussions and conversations with the Doctor as we work together with them towards management of our symptoms. It is important to know what attributes you require from a doctor to ensure you can work comfortably, equally and successfully with them. Always ask questions if you don't know whats happening or what something means. Always discuss your fears and concerns and be honest. In essence, your choosing a person to work alongside you as you search for health and wellbeing, someone who has specific skills you may not have, but you as the patient, have knowledge and responsibility in this investigation also, and should not sit back passively in this process. For individuals with ME/CFS, taking on this responsibility can be overwhelming when brain-fog and fatigue challenge our ability to participate in the most mundane tasks. this is where it is often necessary to take a support person or advocate to appointments, to help with information gathering and sharing.

The topography of scientific enquiry

2010-01-07T13:27:00.002+13:00

As the name of this blog suggests, I am aiming to provide a comprehensive reflection of ME/CFS and maintain regular updated information about XMRV as research continues to establish what role it plays in the disease process of ME/CFS. Due to the nature of writing a blog, and regular research updates, I will lack any form of chronological order of information. When the research side of things is quiet, i'll focus more on management strategies, co morbid diseases (such as Fibromyalgia), Support networks and advocacy, and the like. Today, however, looks like a news/research kind of day.

In a previous blog, dated 28 December 2009, the initial findings of the Whittemore Peterson Institute were discussed. This blog will aim to address some of the research findings since then, and attempt to place this in the frame of reference of scientific method and enquiry. Links to media articles and research will be listed at the end of the page.

First of all, in October 2009, the Whittemore Peterson Institute announced (after six months of rigorous review) they had identified a retrovirus, XMRV, as being present in 95% of individuals with ME/CFS. Xenotropic murine leukaemia virus-related virus is a single stranded RNA genome, which originated in, though did not infect, mice (hence the term xenotropic). It is very similar in nature to other mouse retroviruses, which is why it is termed a 'related virus'.

Now, of course, when a study is conducted, there is the initial hypothesis, or question. The WPI conducted research based on a hypothesis that a group of individuals with ME/CFS (meeting the Canadian Consensus and CDC criteria for diagnosis - see references) are much more likely to be XMRV positive than a group of individuals without the ME/CFS diagnosis. They predicted that they would find a relationship between XMRV and ME/CFS, and then designed an experiment that would test this hypothesis, which, of course, led to the results listed above and in the blog entry of December 28th.

When results are released from any study, but especially one as groundbreaking as that done by the WPI, there is a responsibility for the scientific community to respond by replicating the reseach, in efforts to either say 'yes, this result is accurate, solid science that we can trust in and work with', or 'no, this has flaws in it, which means we have to go back to the drawing board; design new study method'. When the initial research results are released, all information regarding how the research is conducted, including hypothesis, subject criteria, and methodology, is made accessible for other scientists so that any replica research that takes place is accurate and reliable. It is inaccurate for researchers to claim they have proven or disproved the findings of a previous study unless they have accurately replicated all aspects of the original study.

A group of scientists in the UK carried out research which attempted to replicate the findings of the WPI, and their findings were released this week. The UK group, scientists from both King's and Imperial universities in London, stated they had found no evidence of the XMRV in a population of individuals who have ME/CFS (Bosely, 2010). What has since transpired is that this paper should not be considered valid, because it fails to replicate the original WPI research accurately (Vernon, 2010).

This is one of a number of research papers which will take place over the coming months. I am attempting to avoid the politics associated with ME/CFS, suffice to say that there do exist biases in this particular field of medicine. However, continued advocacy, education, and accurate information, will empower individuals to promote understanding and acceptance from the medical and scientific community.

Boseley, Sarah. The Guardian. Research casts doubt over US chronic fatigue virus claim. 2010. Retrieved from http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus on 07 January 2010.

Vernon, S. CFIDS Association of America. XMRV negative results emphasize need for robust robust replication study. 2010. Retrieved from http://www.cfids.org/cfidslink/2010/010603.asp on 07 January 2010

WPI press release addressing dissimilarities between UK and US findings: http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

Where ME/CFS stops and Depression starts

2010-01-06T10:43:00.002+13:00

Historically, psychological interventions such as psychotherapy and cognitive behaviour therapy have been used as treatmeants for individuals who have demonstrated signs and symptoms of ME/CFS, where ME/CFS has been wrongly diagnosed as a major depressive disorder. In this entry I would like the opportunity to discuss the incidence of depression among individuals who meet the clinical criteria of ME/CFS (using the Canadian Consensus Document). It is essential that ME/CFS is aknowledged as a seperate disease to depression.

Individuals who have a diagnosis of ME/CFS may report experiences of one or more depressive episodes, as do many individuals with chronic illness. The risk of experiencing depression increasees . Depression is not a sign or a symptom of ME/CFS. A depressive episode may be triggered by the changes in lifestyle an individual experiences as a result of the ME/CFS, however it is a seperate illness, with seperate signs and symptoms.

Remember, A sign is the objective, observable or measurable evidence of disease, while a symptom is the subjective experience of the individual, things that are not measurable but that the patient reports, such as pain, dizziness or tiredness.

The signs and symptoms of ME/CFS were documented in the blog entry dated 03 January 2010; Signs and Symptoms of ME/CFS. Here I would like to list the signs and symptoms of Major Depressive Disorder, and to demonstrate the diffences between the two seperate ilnesses/diseases.

From the DSM-IV:

A depressive disorder is the name given to a discrete episode of persistant and pervasive emotional depression, which is not accompanied by hallucinations or delusions. At least five of the following symptoms must be present within the same two week period, including a depressed mood and/or a loss of interest and pleasure:

A depressed mood most of the day, nearly every day;
A markedly diminished interest or pleasure in all or most activities;
Weight and appettite changes;
Insomnia (inability to sleep) or Hypersomnia (increased sleeping);
Pyschomotor agitation or retardation (an increase or decrease in activity);
Fatigue, or loss of energy (However, not the same level of debilitating fatigue, with the experience of heavy limbs, and the urgent need to lie down, which is associated with ME/CFS);
Feelings of worthlessness or guilt;
Diminished ability to think or concentrate, or indecisiveness (However not associated with 'brain-fog', and not characterised by difficulty with word rretrieval etc, as in ME/CFS);
Recurrent thoughts of death, or suicide ideation;
The symptoms cause clinically significant impairment in social, occupational and self care functioning;
The symptoms are not due to the direct physiological effects of a substance or a general medical condition, or greif associated with bereavment.

For more information on the diagnostic criteria on depressive disorder, please visit http://behavenet.com/capsules/disorders/mjrdepep.htm

As you can see, there are some overlap's in the signs and symptomsm of depression and ME/CFS. One of the key things to keep in mind, however, is that depression is not a sign or a symptom of ME/CFS. It is understandable that if two years ago you had a very rewarding career, were a fulltime parent, or ran 5km every couple of days, and then suddenly you have had to adapt to a lifestyle of resting, pacing activity, the inability to maintain your original lifestyle (not to mention pain and fatigue), you may very well have an experience, or numerous experiences of depression. And lets be honest, ME/CFS has a myraid of ever changing symptoms, and there is always tradeoffs to any activity we participate in. ME/CFS is pretty rough going, and to get into a cycle of depression makes it so much harder to cope day in, day out. What is important is that if you suspect you are experiencing some signs or symptoms of depression, to go and have a talk with your doctor. Remember to take the Canadian Consensus Document with you when you go so that together you can establish what what is the ME/CFS, and what may be attributed to a depressive disorder. Discuss with your doctor treatment options, and what will work for you within your capabilities.

I have added a list of websites which may be of interest to follow up with:

The Cleaveland Clinic: This is an essay on chronic illness and depression, it has some useful information about different interventions and what you can do http://www.cchs.net/health/health-info/docs/2200/2282.asp?index=9288

Prohealth: An article on the ineffectiveness of treating ME/CFS with Cognitive Behaviour Therapy http://www.prohealth.com/ibs/library/showarticle.cfm?libid=14964
The Canadian Consensus Document: www.mefmaction.net/documents/me_overview.pdf
ME/CFS Australia: a great article which compares depression and ME/CFS using the Canadian Consensus Document http://www.mecfs.org.au/?q=node/12

In future entries, I would like to examine some of the following:

Maintaining identity, meaning and purpose while managing ME/CFS
Working in collaboration with your medical team
Differences between Fibromyalgia and ME/CFS
Some OT stuff - pacing activity and setting goals

I want to hear from people about areas they are interested to see discussed on here, so please leave comments, messages, or emails. Take good care of yourselves, ek.

Signs and symptoms of ME/CFS

2010-01-03T19:10:00.003+13:00

Definitions:

A sign is the objective, observable or measurable evidence of disease, which can be observed by a clinician, such as pulse, temperature or blood pressure.

A symptom is the subjective experience of the individual, things that are not measurable but that the patient reports, such as pain, dizziness or tiredness.

The following is the list of signs and symptoms attributed to ME/CFS, and their implications on the individual. At a later date I will address how ME/CFS can affect work capacity, social interactions and general participation in activities of daily living, and how this may impact on the dynamics of relationships of family, friends and colleagues.

In the Canadian Consensus Document there are seven criteria. There is a link at the bottom of this page with the PDF file of the Canadian Consensus Document, which I recommend printing off and sharing with family, friends and medical professionals.

1. Fatigue
The pathological fatigue experienced by those with ME/CFS includes a combination of exhaustion, weakness, heaviness of limbs, overall physical malaise and cognitive fatigue.
The cognitive fatigue associated with ME/CFS is much more global than forgetting names or directions, it can encompass the inability to process information and sensory over stimulation. This is evident when the individual with ME/CFS demonstrates a delay in information retrieval, such as difficulty responding to questions.
There may be an inability to maintain sustained upright activity, orthostatic intolerance, an overwhelming urgent need to lie down, or at least sit with the feet and/or legs raised. More about this will be discussed under neurological manifestations.
A frequent experience of those who have ME/CFS is sleep dysfunction, such as insomnia. People commonly report being too tired to sleep.
It is extremely important to note that the fatigue experienced by individuals with ME/CFS is not alleviated by sleep or rest.

2. Post-Exertional Fatigue and/or Malaise
There is a significant restriction on mental and physical stamina, and physical activity can trigger a rapid onset of malaise, and/or fatigue, and/or muscle pain. In some cases, exercise may trigger a full blown relapse with exacerbation of all signs and symptoms, which may take considerably longer to recover from.

3. Sleep Dysfunction
Common sleep dysfunctions which may be present in cases of ME/CFS include Hypersomnia (the need to nap frequently during the day), Difficulty getting to sleep, staying asleep, getting to stage 4 level of sleep, non restorative sleep, exhaustion on waking, Insomnia. Sleep difficulty is usually chronic (ongoing) as opposed to acute or intermittent. These difficulties, of course, worsen durning a relapse.

4. Pain
Pain experienced by individuals with ME/CFS is chronic and muscular in nature, which may be described as deep, throbbing, sharp, dull, burning, shooting. Headaches and migraines are very common.

5. Neurological/Cognitive manifestations
Cognitive manifestations: Brain fog is an experience referred to by many individuals with ME/CFS. This includes confusion, slow reaction time, difficulty processing information, difficulty with word retrieval or speaking, impaired concentration, attention, forgetfulness are all common factors in CFS/ME. There is a susceptibility to interference also. An example is when your writing down one word, while your friend says another, you end up writing the word that was spoken by your friend.
Overload: Individuals with CFS/ME are hypersensitive to sensory stimulation, such as lighting, colour, noise, temperature and sometimes texture. Individuals with ME/CFS experience impaired attention and focus when there is multiple sensory input. For example noise and visual input may lead to worsening symptoms or trigger a crash.
Motor and Perceptual disturbance: Individuals with ME/CFS experience muscle weakness, leading to problems with balance and stability.

6a. Autonomic Manifestations
Chronic Orthostatic Intolerance is a common experience in individuals with ME/CFS. This is characterised by the inability to maintain upright positions, and an overwhelming need to lie down. Standing still is not tolerated well, and can induce a drop in blood pressure with or without and increase in the heart rate.

6b. Neuroendocrine Manifestations
Thermostatic instability which includes fluctuations of temperature throughout the day, with episodes of feverishness and sweating alternating with shivering, occurs in individuals with ME/CFS. Experiences of thermal intolerance also occur and may trigger worsening of symptoms, or a relapse. There is frequently marked weight changes, either increase or decrease, and associated anorexia or abnormal appetite. The ANS system disregulations also play a role in loss of adaptability, and the worsening symptoms with stress.

6c Immune Manifestations
Infections and viruses can often precede onset of ME/CFS, such as Epstien-Barr/Glandular Fever/Mononucleosis, as well as HHV-6. Some of the symptoms associated with the immune manifestations include general malaise, tender lymph nodes, recurrent sore throat, and new sensitivities to food and chemicals such as washing powders.

An individual with ME/CFS may not exhibit all of these symptoms, or different symptoms may come and go over time. For the complete document, please go to the following link:

www.mefmaction.net/documents/me_overview.pdf

Starting from the beginning ... the name.

2009-12-29T10:25:00.007+13:00

What is the name of this disease?

For the purposes of this blog, the Canadian Consensus Document: A Clinical Case Definition and Guidelines for Medical Practitioners will be referred to primarily. Other documentation and definitions will be used and referenced, however I strongly suggest downloading and reading a copy of the Canadian Consensus Document, reading it and sharing it with your family, friends and medical team. A PDF copy can be found here:

www.mefmaction.net/documents/me_overview.pdf

Chronic Fatigue Syndrome (CFS), is also known as Myalgic Encepalomyelitis (ME), or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The Canadian Expert Consensus Panel, who developed the Clinical Case Definition and Guidelines for Medical Practitioners, refer to it as CFS/ME.

There are a number of other names which do get used, however, with varying degrees of accuracy, including Myalgic Encephalitis and Myalgic Encephalopathy.

There is currently a movement towards a name change for this disease, for a number of reasons. One being that people with a diagnosis of ME/CFS frequently report that they feel the 'fatigue' label is inaccurate or trivial. Fatigue is associated with many illnesses, and even healthy individuals experience fatigue at certain points in their lives. Furthermore, in ME/CFS, fatigue is only one of a number of symptoms, so 'Chronic Fatigue Syndrome' itself as a name poorly reflects the extent of this disease.

There is much more information available on this issue, I have listed some links below which may be of interest:

http://afairname.org/

http://www.cfs-news.org/namebkgd.htm

http://www.mefmaction.net/Patients/Articles/NameChange/RejectNameChange/tabid/710/Default.aspx

Retrovirology: Part two

2009-12-28T11:26:00.000+13:00

Please know at the outset, I am not an expert on this. The information I have used is summarized from my anatomy and physiology books I used in my University days, which I have referenced at the end.
What, exactly, is a retrovirus?
Like many people, when I first learned about the research findings regarding XMRV and its potential role in CFS, I immediately wanted to understand a bit about retroviruses. I’m naturally a scientifically orientated person; I like not only knowing what something is, but also 'why' it is, and 'how' it works. I know there are others also interested in the 'what’s, whys and how’s' of things such as this retrovirus, ESPECIALLY when it appears to have suddenly affected us directly. I understand, however, that not everyone considers a textbook good quality bedtime reading, like I occasionally do! And when I’m really exhausted, I need something that’s accessible to read, either summarized or written in easy to understand terms. I figure that if I benefit from summarizing what I learn about retroviruses for myself, it may also be of benefit to others.
Part One: DNA to DNA replication (parent to daughter cells – sorry guys)
As I vaguely remember, school taught me that my body is made up of organs, which are in turn made up of millions of cells. Inside every one of my cells is a copy of my individual genetic information, which 'codes' for each of the protein molecules needed to build my specific characteristics and features. This information is held in the centre, or nucleus, of every one of my cells, a fact which is exploited in many crime shows on TV, where the good guys find the bad guys by identifying their bad-guy-DNA in a strand of hair, or drop of blood.
These cells of mine are replicating constantly, as is the all-important information code held within them called DNA. This cell division process is called mitosis (except in sex cells, but that’s a story for another time). Many of us are familiar with the wound up ladder image of DNA, called a double helix, which resides, curled up tight, in the nucleus of a cell. Every time a parent cell replicates, (creates an identical copy of itself by going through the process of cell division), it must also replicate this precious cargo, the DNA. To do this, the DNA unwinds, and begins to separate at one end of the ‘ladder’, right down the middle of each 'rung’, so we now have two 'half-ladders’ at one end of the unwound DNA strand. Each of these ‘half-rungs’ along the length of separated DNA is a molecule. These individual molecules are called a ‘nucleotides'. Both of these half-ladders of nucleotides are now ready to act as templates for replication. An enzyme, 'polymerase', (a blue-collar worker), speeds in wearing his sweat bands, and starts frantically matching new, individual, nucleotides to the original, exposed nucleotides of each one of the 'half-ladders’ of original DNA, which leads to the rebuilding of TWO whole (and, of course, identical) ladders of DNA once again . Eventually, these ladders coil up again into two strands, and link at the centre, forming a pretty standard X-shape. We can now call this pretty standard X-shape a chromosome. When the parent cell divides into two, it pulls apart our standard X-shaped chromosome, so that each daughter cell ends up with one ladder of DNA, at which point the process begins again. But this is not the only form of replication that occurs.
Part Two: DNA to RNA replication (Protein synthesis)
As mentioned previously, my individual DNA stores the information on how to build each specific protein molecule my cells need in order to function, and on a grander scale, these proteins dictate my characteristics. The problem is my DNA never leaves the nucleus of a cell. Therefore, I need something to go on an adventure into the cell nucleus, to get the information off the DNA and translate it into protein molecules. RNA is up to the task. During a process called transcription, RNA builds up a copy of the DNA strand inside the nucleus, in a similar manner as when DNA replicated itself. The DNA ladder uncoils and splits down the centre of each rung for the length requiring. Once the RNA has finished making a copy of the DNA, it gracefully exits the nucleus. Once the RNA is outside the nucleus, it begins the process called translation, where the RNA strand is literally translated into the specific proteins molecules that underlie all cellular activities. So what does this have to do with a virus?
Part Three: Virus and retrovirus replication

Viruses are super tiny obligate parasites, meaning that they require a living ‘host’ cell in which to replicate. Aside from being so small, they are also rather simple in their structure. A virus is a strand of either DNA or RNA, wrapped up in a protective protein coat, and some also have a fatty envelope which provides added protection when they are outside of host cells. Unlike cell division, viruses replicate by using the mechanisms available in a host cell. So, a virus comes up to one of my healthy, living cells and enters through the cell wall, or injects its genetic material into the cell (as is the case for bacteria cells). The virus then manipulates the replication machinery of the my host cell, if it’s genetic code is DNA, it enters the nucleus of my cell and makes copies of itself in the same way my own DNA replicates, as described in part one. (If it’s genetic code is RNA, it replicates outside of the nucleus, and may or may not create proteins). When the virus completes its replication, it exits the cell by bursting the cell membrane and killing the cell.
The retrovirus is an RNA virus, however, instead of creating copies of its RNA in my host cell, it uses an enzyme called reverse transcriptase to produce DNA. (If you remember in part two, this process usually works the other way, and my DNA code is copied by the RNA and used to produce protein molecules). This DNA copy of the virus is then incorporated into my DNA genome, residing in the nucleus of my cell, and replicates, along with the rest of my genome, during each cell division process.

It is suggested that up to 8% of the human genome has been acquired over the generations through retroviruses, however much of this genetic information does not appear to code for anything and is thus called ‘junk-DNA’.

I hope that some of this is helpful, and gives a little insight to the processes going on at a molecular level, for those interested. If there is anything you wish to add, change or remove, let me know, or if you want further information, contact me for a list of references.

Gallo, R, C., (1991). Virus hunting AID’S, cancer and the human retrovirus: A story of scientific discovery. USA: BasicBooks.

Marieb, E., (2001). Anatomy and physiology (5th ed.). pp 94 – 109. USA: Benjamin-Cummings pub co.

Retrovirology, part one

2009-12-28T10:53:00.003+13:00

Recent research conducted in October 2009, at the Whittemore Peterson Institute indicated that a retrovirus, XMRV (Xenotropic Murine leukaemia virus-Related Virus) was present in initially 67% of CFS patient samples, and subsequent research, also at the WPI, has found the virus in 95% of CFS patient samples. It is important to note that the XMRV virus is also present in 4% of the healthy control samples. I will address this further in the following post, however this does not mean that this 4% of healthy people will become sick with CFS. They may have strong immunity to this virus, or there may be other, as of yet unidentified, reasons behind their remaining healthy.
Another cautionary point is that as of yet we are waiting to understand the exact nature of the relationship between XMRV and CFS, whether XMRV causes CFS. Further research will lead to better understanding of this.
It is beleived that XMRV is potentially transmitted through body fluids, however further research and understanding is needed before guidelines are implemented in how to manage this in the interest of public safety. This is where understanding and promotion of XMRV awareness is essential.

RESOURCES:
http://www.wpinstitute.org
http://www.wpinstitute.org/xmrv/xmrv_qa.html

Please don't hesitate to add your thoughts to this.

My story

2009-12-28T10:44:00.002+13:00

Recently, I was invited to join a group on facebook, run by the Whittmore Peterson Institute. I was drawn to this particular page because it provided information and updates on the recent research findings with regards to XMRV. Until now I have not written up my own story and experiences of fatigue as I don't like to focus so much on the illness, especially when it is a 'diagnosis of last resort' and has a psychosomatic undertow. This is probably the same reason that has kept me from accessing support groups. I often find it hard to sit down and acknowledge being sick - I would rather spend what little energy I have on things unrelated to illness, or more recently, promoting awareness and education around CFS.

I'm 27 and an Occupational Therapist. I live with my husband, Saul, and our two Burmese, Madeline and Francesca, in Dunedin New Zealand. This is how I define myself. But I have illnesses and disability, which interfere with this definition at times. Occasionally, I am a sick young woman, who feels I have no justification for spending three days a week in bed. At times, I am the wife who may miss out on extended in-law family celebrations, or the sister who gets fed up because she gets too tired to process conversations.

For reference, I was also born with a mild weakness on my right side - a rare form of Cerebral Palsy, which affects me only when I'm very tired - ironically. But this story is about Chronic Fatigue Syndrome.

At 14 years of age, I got diagnosed with Epstien Barr Virus (EBV). Like many kids at school. The difference is, this tiredness, this fatigue ... just ... never ... abated. At that stage I was in bed for 6 months. You all know this story, getting up and having a shower is akin to climbing Mount Everest. Now for any teen who is at the age where they are beginning to develop socially, it's tough to get used to suddenly being too exhausted to even walk out to the letterbox. For someone who was previously involved in sports, art groups, going to friend's places, meeting people, it's even harder to suddenly be in bed all the time. I mean, I had a pretty room, comfortable pajamas, but that's not what life is supposed to be like. I couldn't even watch TV, it was too hard to process the whole visual/auditory stimulation. Reading was out because I couldn't follow a train of thought. I'd have weekly or fortnightly visits to the doctor and I would stress for a whole day beforehand about how I was going to be able to get up, get dressed, travel in the car and sit and wait for the doctor then return home. Even sitting became a problem for me, and I still struggle with the need to lie down frequently. I would be hot and then freezing cold. That first summer, I spent the whole time wearing a wool jersey. Of course, school went on hold for months, but I gradually got back for two, then three, then five half days per week. I left school with the bare basics to get into University of Otago. And that threw me. I'm an academically orientated person - I love science, I love study and I love learning. And yet even that part of my life, that part of 'me', was being compromised.

And that was probably the exact year when I literally said 'sod this - I will fight for the me that I want'. So I did. (Stupidly enough in retrospect).

I joined support groups in the community. I took on roles of coordination and committees and any group that could give me the 'me' I wanted back. I put my name down for voluntary work in the community. I entered into Occupational Therapy school, I moved out of home. I was living a 'normal life'. And getting very very sick. I had to cut my hours at the OT school. I had to move back home at the end of that year (my mother had wanted me home at the start of the year - she could see what was happening, but I thought I could push through). I had to give up the voluntary work, the groups and the committees, and consequently that Christmas was 10 weeks in bed. But after taking five years to do my three year degree here I am. I did it. In retrospect I really should have pulled out, taken a year off, but I was too stubborn. I didn't want to be 'lazy' or a failure. And I knew people in my peer group would see me as just that. Of course now I've learnt that I only have to prove myself to me. And, though I have always been reluctant to cite Chronic Fatigue Syndrome for not getting where I want to be, I do need to acknowledge it.

Today I still struggle with balancing my life - I work 30 hours a week, which I monitor well. I am excellent at pacing work, but I still have a very strong tendency to take on a lot of extra things that I don't have to. I do 'overdo' it at times, and pay for it afterwards. I cannot process too many sensory stimuli at once (usually noise, which is a pain because I love my music). I cannot tolerate too much going on around me but I didn't relies this until maybe two years ago, that too many people, too much noise, colour, busy-ness just shocks my system and I relapse.

But I have done this, I have found the 'me' in the M.E. and I can define myself outside of this disease, which has always been and always will be a hard journey, but it's been worth it.

In future post's, I aim to refrain from discussions about what treatments have or haven't worked for me, as it appears that many different treatments can work for different people. I will write a post on what CFS is, and the diagnostic criteria.

Introduction

2009-12-28T10:08:00.004+13:00

I would like this opportunity to say welcome to this simple blog on CFS and XMRV. There are a number of blogs, websites, profiles popping up all over the internet which deal with Chronic Fatigue Syndrome, Fibromyalgia, and the recent findings related to XMRV. The intention of this blog is to complement the information provided, to support people to understand what the implications of the recent and upcoming research are, what we can do as a united group and how to tackle this as individuals. This blog does not have all the answers for people about this illness, or the XMRV virus, however it will aim to provide a useful list of resources for people to go to find the information they want. There are many blogs and websites devoted to providing peer support to significant others, friends, work collegues and clinicians, and of course individuals themselves who have this disease, and although this is not intended as a peer support blog, it is my hope that people will get to know each other, share stories and become part of a greater CFS internet community.

Some of the topics I would like to discuss in future posts will include:

What does it mean to have Chronic Fatigue Syndrome
Working with a multidisciplinary team towards symptom management
Educating the medical profession
Maintaing purpose and meaning in your life
What does it mean to have a retrovirus?
Explaination of the retroviral process

If you have a subject you would like discussed, please email me or leave a comment and I will try to address it promptly. I will indicate areas which are my own opinion, and those which are standard practise to ensure people are clear on the information provided.