27 January 2010

Sleep dysfunction in ME/CFS

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.

 

22 January 2010

Dr Judy Mikovits' Presentation

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


20 January 2010

Fibromyalgia Signs and Symptoms

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

13 January 2010

Maintaining Meaning and Identity

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.

10 January 2010

Partnership

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.

07 January 2010

The topography of scientific enquiry

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

06 January 2010

Where ME/CFS stops and Depression starts

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.

03 January 2010

Signs and symptoms of ME/CFS

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