29 December 2009

Starting from the beginning ... the name.

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

28 December 2009

Retrovirology: Part two

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

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

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

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.