CFS The Canadian Clinical Case Definition

Discussion in 'Fibromyalgia Main Forum' started by happycanuk, Nov 20, 2006.

  1. happycanuk

    happycanuk New Member

    The Canadian Clinical Case Definition is summarized as follows:

    1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [Editor’s note: The M.E. Society prefers to use “delayed recovery of muscle function,” weakness, and faintness rather than “fatigue.” Further, we disagree that the muscle dysfunction is “unexplained.” See our M.E. Definitional Framework and researchers’ medical explanations on this website.]

    2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. [Editor’s note: neuropathy pain is a common symptom and should be added here as well.]

    4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.


    AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities. [Editor’s note: low plasma and/or erythrocyte volume should be added as another explanation for orthostatic intolerance in this disease. We also hold that more cardiac symptoms should be listed such as left-side chest aches and resting tachycardias, which, in addition to low blood volume, have also been documented in the research. The full text of the case definition does suggest 24-hour Holter monitoring, and when tachycardias with T-wave inversions or flattenings are present that they not be labeled as nonspecific since they aid in the diagnosis of ME/CFS. See the above link to access the diagnostic part of the document.]

    NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

    IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.
    6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.


    This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275. A few edits and suggestions were added by the M.E. Society of America. As we have noted, the M.E. Society of America holds that this is the best case definition so far, although it is not perfect. Listing more cardiac and neurological symptoms (e.g., chest pain, left-side chest aches, tachycardia, and neuropathy pain), and emphasizing muscle weakness and faintness instead of “fatigue,” would have more accurately represented the symptomatology and vastly improved the criteria (please see our M.E. Definitional Framework on this website). Nevertheless, the Canadian Consensus Panel clinical case definition more accurately represents the experience and manifestations of the disease than other current case definitions. Again, for the 30-page diagnostic ME/CFS case definition click here.

    [This Message was Edited on 11/21/2006]
  2. mezombie

    mezombie Member

    Isn't it great? Soooo much better than the CDC case definition! When will they see the light and adopt this?

    To read (or better yet, print out -- it's long) the entire document, go to:
    [This Message was Edited on 11/21/2006]
  3. shar6710

    shar6710 New Member

    Wow, as an American I'm sooooo jealous.

    It is a really good definition.

  4. mezombie

    mezombie Member

    The 30-page article (link above on my previous post) is specifically geared toward clinicians--our treating doctors. The descriptions of the symptoms are excellent, and the treatment options go way beyond the CDC's. And they DO NOT recommmend CBT and GET!

    I highly recommend printing out the article and keeping it as a reference source. I've given it to people who are trying to understand what I'm going through, and it's really helped.

    Doctors might pay attention, too. Even though it's officially Canadian, physicians from around the world, including our own Dr. Nancy Klimas, co-authored these guidelines.
    [This Message was Edited on 11/21/2006]
  5. Pianowoman

    Pianowoman New Member

    If you can't print all that and if you can swing it, all the material plus more is available in the Journal of Chronic Fatigue Syndrome, Volume 11, Number 1. It is available from Haworth Medical Press. Also the last time I checked, it was also available on Amazon.
    I agree that it is a very helpful document

  6. mezombie

    mezombie Member

  7. NancyMystic

    NancyMystic New Member

    The best definition and summary of symptoms I've seen.

  8. MsE

    MsE New Member

    This is a good explanation/definition. Thanks for posting it.
  9. cct

    cct Member

  10. Rafiki

    Rafiki New Member

  11. marti_zavala

    marti_zavala Member

    this is a great post. This is my favorite of the definitions (most like Ramsey - the original one). The CDC's Fukuda is one of the worst.

    May I make a suggestion: Could you change the title to ME/CFS?

    You don't have to, just suggesting it to make it clear that there is now a difference between the old CFS, where one assumed that you meant the ME/CFS or CFIDS.

    Now there is a newer use for the term CFS - which is simply an unidentified chronic fatigue - could be from any illness including depression. This is what is happening with the CDC's newer website info - everyone who has fatigue is thrown into the pot. This has been happening in the UK for a lot longer. It happened here, then got better and now it seems to be slipping back.

    It is not helpful to anybody to be misdiagnosed - so having a good working definition is helpful. Thanks for posting this.

    If you like this criteria -write your representatives and tell them that we need to accept the Canadian Document not not accept the UK's NICE guidelines (all psychological).

    It only takes 5 minutes to send several emails

  12. mezombie

    mezombie Member

    The link Marti_Zavala gave is to the CFIDS Association Grassroots Action Center. The CAA does *not* advocate on behalf of Myalgic Encephalomyelitis, adoption of the Canadian Definition, or anything other than greater funding and understanding of 'CFS', i.e., chronic fatiguing illnesses.

    I would suggest going to and/or, where there is a great deal of information, including descriptions of the differences between the CDC and Canadian Definition.

    There are also a sample letters to Congress on these sites, a handout, and a petition urging adoption of the Canadian Definition in the US.

    No offense, Marti.


    [This Message was Edited on 07/15/2008]
  13. marti_zavala

    marti_zavala Member

    No offense taken. I defer to you and others who are more experienced with advocacy.

    I love the CFIDS Grassroots because all of the email addresses are set up and ready to send.

    Just delete any text they have and paste in your own - I sent my entire 2 page presentation for the NIH CFS Advisory Committee to all of the representatives.

    It was so easy.

    Perhaps using the text on the website you suggested with the toolkit on the site I recommended would be the best of both worlds.

    I have always been too brain fogged to locate my representative email addresses so the Grassroots toolkit simplified that for me.

    Would that work?
  14. Rafiki

    Rafiki New Member

    I agree. I posted this info on another thread for someone today and found myself struggling with the question that began the thread, "Do I have CFS?" What is CFS?

    Another relatively new member had not seen these guidelines before and asked that they be in a post of their own. I bumped this but should have just started a new thread as I totally agree that the title should be amended in order to be more correct.

    The only problem I can see is that those who have been diagnosed as having CFS but who actually have ME may have no idea what it is.


  15. mezombie

    mezombie Member

    Well, as I recall, the CFIDS Association (CAA) form letters always contain some preset language that can't be removed. If it can, I don't see a problem with your technique.

    I realize the CAA makes it very easy to send their message. But it's not that hard to find your Representative's or Senator's address on

    Even better, IMHO, is the Congressional Action Campaign on the website of NAME, That site also has easy to access information on finding the relevant addresses.

    Rafiki, I'm going to see if I can find something to bump or start a new thread here on basic information on M.E.
  16. Rafiki

    Rafiki New Member

    A neighbour asked me just what it was I had "again": What is it you have, again?

    I said that I had ME.

    She said, "What's that?"

    I said, "Uh, well, uhm... Chronic Fatigue Syndrome."

    What the... ? Am I stupid? AM I ?!?

    The correct answer is that it's a neuro-immune disease.




  17. moreinfoplease

    moreinfoplease New Member

    My question is whether those of you who say you have ME or CFIDS have assessed that yourself or have been told that specifically by a dr.

    Because I have just today (after years of trying) been able to get a doctor to say yes I do meet the criteria of chronic fatigue syndrome. Previously drs have not wanted to touch chronic fatigue no matter which name was used, either because they were busy ruling out many other things, didn't belive in chronic fatigue, or I don't know what else....thought I was a hypochodriac I guess.

    So, with today's doctor who was just awful to deal with as a person, just really not pleasant at all, but he does appear to know something about chronic fatigue and fibro, and so I did not push him on anything, least of all, the issue of whether he meant cfs or me or cfids.

    In my opinion, I meet the criteria of the canadian criteria. If that is so, what do I have? CFIDS? ME? CFS?

    It seems like it would be really confusing to say now that CFS will refer to unidentified chronic fatigue. Maybe that condition should just be called "chronic fatigue of an unidentified cause" not CFS, because like it or not many people know CFS and some associate it with the severe illness we are describing on this board, so I think it is a problem to now reuse the same name for something less serious.
    [This Message was Edited on 07/17/2008]
    [This Message was Edited on 08/29/2008]
  18. moreinfoplease

    moreinfoplease New Member

  19. Spinetti

    Spinetti New Member

    You are right. It is confusing and a problem to use the same name, which once referred to a serious disease, for a group of conditions.

    Unfortunately, the Centers for Disease Control and Prevention has adopted a strategy to "control" CFS by redefining it out of existence.

    As a result, patients, doctors, and researchers have been left without a useful definition or guidance.

    The Canadian Definition provides answers to this problem.

    For more info please see:

    The M.E. Society of America and the National ME/FM Action Network sites.

    Best wishes!
  20. tansy

    tansy New Member

    Prof Peter White argued against adopting the Canadian Guidelines. He knows if the UK did this he and his colleagues would no longer be able to sustain their self appointed roles as the experts on CFS.

    tc, Tansy