1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 14, 2013.

  1. snowathlete

    snowathlete

    Messages:
    2,241
    Likes:
    2,766
    UK
  2. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
    I haven't got access to the whole paper, so I've only read the abstract, but it seems that it could be a useful contribution to the debate.
    I would be happy if the CDC made a start with subgrouping Fukuda CFS in the way outlined in the following extract from the abstract:

    "Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda's criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity."
     
    Valentijn likes this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,140
    Amersfoort, Netherlands
    I think the PEM/PENE differences between the CCC and ICC are pretty minimal. Basically the ICC is more recent so had more research-based abnormalities to list associated with it versus normal response to exertion. But the same research is there regardless of whether the CCC or ICC is used, so long as PEM/PENE is being prominently featured.
     
  4. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
  5. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    As a fatigue state, PEM seems to be implicated in a number of diseases, whereas PENE is defined as a neuroimmune response. The ICC authors note:
    The ICC symptom clusters focus on PENE: (1) PENE, (2) neuorological impairments, (3) immune, gastro-intestinal & genitourinary impairments, and (4) energy metabolism/ion transportation impairments. The CCC clusters focus on fatigue: (1) fatigue, (2) post-exertional malaise and/or fatigue, (3) sleep dysfunction, (4) pain, (5) neurological/cognitive manifestations, (6) autonomic / neuroendocrine / immune manifestations, and (7) at least six months of illness.

    Being more restrictive, ME is less a diagnosis by exclusion. Compare the ICC and CCC exclusions:

    Excusions (ICC): Primary psychiatric disorders, somatoform disorder, substance abuse & paediatric 'primary' school phobia.

    Exclusions (CCC): Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer...treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.
     
  6. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
    PEM is not a "fatigue state". There is a difference between fatigue and malaise.

    But even in terms of 'fatigue', I'm not sure if there are any other diseases which feature post-exertional fatigue in the same way as ME does. i.e. prolonged severe fatigue (assuming that 'fatigue' is a feature of 'malaise', for the sake of discussion) as a delayed reaction to minimal exertion, which is not relieved after normal rest.
     
    Valentijn and Nielk like this.
  7. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    Can you clarify further? The second cluster in the CCC is "Post-Exertional Malaise and/or Fatigue." When I say that PEM "seems to be" implicated in a number of diseases, I'm simply responding to numerous comments that I've read on this forum. I haven't heard it claimed that PENE, the cardinal feature of ME, features in the same way in other diseases.

    If it helps, here are the definitions of PENE (ICC) and PEM and/or Fatigue (CCC):
     
  8. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
    Ember. Thank you for the info re the CCC. I didn't realise that a patient could have post-exertional malaise or fatigue, for the CCC. I thought the CCC required post-exertional 'malaise'. So thank you for highlighting that.

    I wonder how many others haven't noticed that.



    It's an interesting issue to explore...
    I've always considered there to be a subtle qualitative difference between fatigue and malaise.
    And I've always considered 'fatigue' to be a feature of 'malaise'.
    For 'malaise' I think of flu.
    For 'fatigue' I think of how it feels to be exhausted from exercise.
    Thinking about it now, I wonder if it is possible to easily distinguish the two, if at all.
    Perhaps there is a subtle difference.

    On google, 'malaise' is defined as: "A general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify."

    I don't know how much research has been carried out to distinguish 'malaise' from 'fatigue' in CFS/ME patients.
    But, as you've been pointing out, the ICC defines PENE quite specifically.

    I've yet to hear of any disease, or illness, which features PEM or post-exertional fatigue in the same way that CFS/ME does. I think it is unique to CFS/ME. (i.e. prolonged severe fatigue as a delayed reaction to minimal exertion, which is not relieved after normal rest.)
     
  9. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    When I had cancer, I was excluded under the CCC. I wouldn't have been excluded under the ICC.
     
  10. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
    And I've often heard of people with cancer being wrongly diagnosed with CFS/ME.
    Cancer can feature severe fatigue, but my argument is that the fatigue, or malaise, that cancer patients experience, is qualitatively different to the PEM that CFS/ME patients experience. I believe that the two are distinguishable, and I've never heard any experts argue that they are indistinguishable.
    If the CCC is not able to distinguish between cancer patients and CFS/ME patients, then perhaps it's not adequate.
    (BTW, I've never argued that the CCC are superior to the ICC.)
     
  11. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    No, the CCC isn't adequately to distinguish ME/CFS from cancer. As an aside, I considered the likelihood that I was immuno-compromised in deciding whether or not to undergo radiation. I walked out when my GP told me not to think like that because ME/CFS is a syndrome, in any case, and not a disease. That scene wouldn't have happened had the ICC been published at the time.
     
    Bob likes this.
  12. Bob

    Bob

    Messages:
    8,845
    Likes:
    12,391
    South of England
    Sorry to hear that you had to go through that sort of nonsense, Ember.
    I know that my GP would think similarly.
     
  13. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    GPs adhere to case definitions, and these do have consequences. I'm grateful that Dr. Carruthers accompanied me through that nightmare. I wonder how many such stories it takes to inspire change.
     
  14. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    My questions about process remain unanswered, so unfortunately I'm left to speculate. The authors of the ICC have asked that a CCC diagnosis be left in the more encompassing CFS classification. Is the broadening of the ME designation in this initiative, so as to denote CCC-defined ME/CFS, supported by the IACFS/ME? I ask because of a rumour to similar effect from a year ago:
    I notice that the IACFS/ME hasn't yet included the ME-ICC in its list of case definitions.
     
    snowathlete likes this.
  15. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    I answered your questions as best I can in #20 above. Medfeb's been busy the last few days but I expect she'll say more when she's able.

    As I described in #20, the process of drafting the letter involved many representatives of ME/CFS patient organizations and individual patient advocates. Now it's been sent to the DHHS and we're having a more public discussion about it. We'll see what emerges during that discussion; I expect this campaign to continue and evolve as the issues are opened up and discussed more widely.

    The merits of CCC and ICC for the purposes of this letter were discussed while the letter was being drafted, and it's no surprise to me that this question is a focus for the discussion now. I hope that some of those who were involved in those discussions will explain here in more detail why the letter focused on the CCC, but the rationale has already been clearly summarised in the article:


    That seems to me a strong argument that the CCC is a far more realistic objective and I think it's pretty clear from the above that those who debated these issues simply preferred to campaign for what they consider to be realistic objectives. Since the ICC has not yet been proven by practical use, it's harder to argue for its adoption at this point in time.

    And since the ICC is itself a (young) evolution of the CCC, if the CCC were adopted in the way that the letter argues, in time there would eventually be further evolution of the definition, likely from CCC to ICC or from CCC to some other new and similar case definition. It seems to me more practical, if one does actually want to achieve change, to get behind a broad campaign for 99% of one's objectives, and with a very good prospect of achieving the remaining 1% in the fullness of time, rather than opposing that campaign and arguing about the 1%.

    So from my point of view, it's fairly clear that the difference between the current situation of a mixed population defined by definitions like Fukuda and Oxford, and the position argued for in the letter, is a much, much bigger difference than the technical difference between ICC and CCC. This would be a big step forward, and to oppose the letter on the basis that it should have argued for ICC rather than CCC seems like a case of "the best is the enemy of the good". As wikipedia puts it: "insisting on perfection often results in no improvement at all". Or as Winston Churchill put it: The maxim "Nothing but perfection" may be spelled "Paralysis”.
     
    snowathlete and Valentijn like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,686
    Likes:
    12,523
    Logan, Queensland, Australia
    Mark As a perfectionist, I have the opinion that demanding perfection often leads to a logical trap and inaction, just as you quoted from Winston Churchill. Perfectionism often goes with a rational choice, and the best choice is not often the most useful. When criteria about how useful a choice may be are used, often the best choice becomes impractical, while a lesser choice becomes highly desirable. I think thats the the issue here: long term the CCC is a better initial choice unless things change. Things will indeed change in time, and at that point the ICC might be much more easily adopted. How hard will it be to convince someone to accept ICC if CCC is already adopted as the standard? Not hard at all is my guess.
     
  17. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,208
    Sth Australia
    It either wasnt coming up at the time or my brain had dived into some hole.
     
    snowathlete and Bob like this.
  18. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,208
    Sth Australia
    Too right.

    We've all seen how things stagnant when it comes to ME/CFS so hence we need to keep progress moving forward. As long as its doing so, we are getting somewhere.
     
    snowathlete and Sasha like this.
  19. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,208
    Sth Australia
    The ICC-ME definition for one.. a person needs 2-3 more symptoms then the CCC-CFS definition to fit it fully. There was also some other difference too but sorry I forgot now what.
     
  20. Ember

    Ember Senior Member

    Messages:
    1,743
    Likes:
    1,829
    My specific question above was about the broadening of the ME designation by this initiative through its use of the term ME to denote CCC-defined ME/CFS. That move runs counter to the direction set by the ICC authors. You mention a future partnership with the experts who developed the ME-ICC and the CCC, and the joint letter states that “key stakeholders – ME patients and ME experts -- must be engaged in a full and open partnership to plan for and ensure the implementation of this change.”

    I accept that Phoenix Rising entered the process partway through, and I've assumed that you can't answer any question about the early decisions. I've asked whether any medical or policy experts were consulted. The ICC authors and Dr. Jason are frequently cited. Was Dr. Jason afforded the courtesy of reviewing the joint letter before it was sent? The lead authors of the CCC and the ICC apparently were not.
     

See more popular forum discussions.

Share This Page