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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. Mark

    Mark Acting CEO

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    Ember, earlier in this thread you cited Invest in ME in support of the ICC, and indeed the ICC primer was distributed to conference attendees. But I believe you are misrepresenting the ICC authors and Invest in ME when you cite their support for the ICC as a reason to reject this petition and letter. I will be trying to get comment from ICC contributors and authors on this matter in due course, but if you can get a quote from any of them opposing the letter to the DHHS I'd be most interested to see that. Meanwhile, I do have some quotes from the IiME conference journal from last week which I think illustrate that those supporting the ICC are not also opposing use of the CCC:

    Page 6:
    "So we need...to adopt the latest ICC or CCC criteria for ME - for research and for diagnosis"

    Page 21 (titled Guidelines):
    "Invest in ME support the use of either the so called Canadian Consensus Criteria (CCC) or the later version of these guidelines the International Consensus Criteria (ICC). For some time Invest in ME have been responsible for distributing printed copies of the Canadian Consensus Guidelines in the UK...The Canadian guidelines were recently endorsed by the US CFS Advisory Committee. More recently the International Consensus Guidelines (ICC) has been produced and is available in printed form from Invest in ME. Contact info@investinme.org to order."

    With this in mind I would be interested if you could supply a referenced quote from any ME, ME/CFS or CFS organization, research or physician saying that they are opposed to the use of the CCC. The quotes from the ICC itself do not indicate that, despite your interpretation of them, and I do not believe that any of these organizations or individuals would support the line you are taking on this.
  2. alex3619

    alex3619 Senior Member

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    There are indeed huge problems with even ME as a category. Its long been compromized.

    The old research does not go away because a name or definition has changed. Its still on the record. Lets suppose CFS and ME lead us to a new disease definition called, wait for it, Bluck Disease. I like to use that as a nonsense word, as it takes it a step away from precenceptions, though it does risk people seeing it as silly.

    Bluck Disease would still be historically grounded in ME and CFS research. However having a biomaker, lets call it marker X, means that the old research is suspect. Important issues in the old research can then be retested on Bluck patients. The research and old results are not gone, it just needs to be retested.

    What about patients? The term CFS isn't going anywhere for a long time, no matter what we do. Nor is the term ME. Bluck Disease would become a new category, placed wherever on the ICD the underlying mechanism puts it .. possibly in immunology. In time the old category for CFS would be deleted as obsolete, but not for years giving the medical system time to adjust to the new disease category.

    What happens to patients without marker X? Nothing much will change until we find their issues, be it linked to marker Y or Z, and mechanism B or C.

    Science evolves. Definitions evolve. The category CFS will eventually die, and I think so will the category ME. It will however remain in the history books.

    One of the issues that has happened with very weak disease definitions is weak scientific results. Those results should strengthen once we have a good objective definition. A good definition can mean better results from smaller studies, reducing costs. Higher replicability of results should occur, meaning the results can be considered more reliable.

    For the meantime though whether we call it CFS, ME or Bluck Disease (I wont abbreviate that for obvious reasons) doesn't matter to the public, nor to much of the medical profession. Where it matters are our scientists, and its not the name that matters but the definition, especially if its backed by good diagnostic and treatment biomarkers.

    So in a sense, as I have said before, the whole CFS, CFS/ME, ME/CFS and ME debates are side issues from a scientific perspective.

    From a political perspective its entirely different. CFS has such a large negative legacy that its a very bad term to use. People who are ill informed on the topic - and thats almost everyone - will jump to conclusions. ME is taken much more seriously. From a public relations perspective the name is more important than the definition.

    However the real negative driving force stems from psychogenic medicine. Nothing we do scientifically will change that that unless we have a diagnostic marker X, mechanism A, and cure G (for Good). Even then they will say, ok, Bluck Disease is something else, but we were right about the rest, now let us help these patients who do not have Bluck Disease. The history of psychogenic medicine is all about targeting anything that is not understood, without any objective evidence. They argue that we have no objective proof that CFS or ME exist (while ignoring the science that shows things are physically wrong) because we have no mechanism or biomarker. As i say in my signature, if thats such a big problem doesn't the same argument apply to any psychogenic diagnosis?

    More in a while.
    WillowJ and Firestormm like this.
  3. alex3619

    alex3619 Senior Member

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    Psychogenic medicine has a really really bad track record. No objective tests. Very poor science, if indeed it can even be said to be science, which the leading philosophers of science in the twentieth century disputed, including Popper. Not once have they ever been demonstrated right. Numerous times they have been shown to be wrong. Lets call it 20 for wrong, zero for right. What is the ratio? Divide 20 by zero and what do you get?

    None of that proves they cannot be right, some time for some disease. Its hard to prove that, and maybe impossible. What can be said is they have no objective case for these diagnoses to exist, or for any of it to be considered either science or part of medicine. Its an unproven collection of hypotheses still awaiting decent science. It does not deserve substantive research funding, or any privilege under law.

    If they are so good, and so right, how come the cure rate is dismal? Their defence, of course, is that these problems are part of the difficulty in working with mental illness, the mind is so very difficult to study and mental illness is hard to cure. Or they go the other way, and invoke vague claims that these arguments fall afoul of Cartsian dualism. There is no mind, there is only the Force. Oh, wait, thats a sci fi movie franchise. The problem with all of this is that to invoke their mechanisms they have to invoke what is essentially magic. Trust us, we have an unproven and unprovable idea, and we are doctors, so it must be right.

    These are unproven experimental hypotheses. Treating them as anything much more than that is potentially pseudoscience. I have a lot more to say about pseudoscience, but this is not the venue for it.

    I have a question of my own. If pseudoscience gets a grip in a branch of applied science, and is protected by conservative institutions and even the law, how do we get rid of it? How do we stop them biasing the agenda? How do we stop the harm this causes?
  4. Ember

    Ember Senior Member

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    The International Consensus Panel hasn't opposed the use of the CCC. Rather they have stated that those diagnosed using the CCC “should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.” With the CCC thus diagnosing CFS, I've asked why we would be requesting the adoption of such an outdated definition.

    I quoted Invest in ME earlier: “We have for a long time stated that we support an evolutionary development and improvement of the Canadian Guidelines....The International Consensus Criteria are welcomed and we fully support these new criteria.” If you are claiming that I've misrepresented others, please quote me exactly to support such a claim.
    Firestormm likes this.
  5. Bob

    Bob

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    Ember, I respect your passion and sincerity about this subject, but I agree with Mark that you are over-interpreting things.

    The ICC panel may prefer the ICC, but they have not denounced or retracted the CCC, as far as I am aware.

    And support for the ICC does not automatically exclude support for the CCC.

    Invest in ME are long-term supporters of the CCC, and I haven't seen any statements from them saying that they do not now support the CCC.

    And as I pointed out earlier, your claim that the CCC is a 'CFS' criteria is your own interpretation, and it is not the stated position of the ICC panel, as far as I am aware. (Your historic posts clearly show that they always intended it to be an 'ME' criteria, and they haven't issued a categorical statement to change their position.) (I understand your interpretation, but I don't think I agree with it.)
    Valentijn likes this.
  6. Ember

    Ember Senior Member

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    I've repeatedly quoted the recently-stated position of the International Consensus Panel:
    For the past three weeks, I've been asking whether any medical experts were consulted concerning the demands, including the implementation plan, put forward in the letter to DHHS. I've asked too whether those frequently cited in the letter were afforded the courtesy of reviewing it before it was sent. Mark now says, “I will be trying to get comment from ICC contributors and authors on this matter in due course....”

    The letter to DHHS states, “In keeping with President Obama's commitment to Open Government, the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change.” In view of this statement by the advocates, consultation seems overdue.
    Firestormm likes this.
  7. Firestormm

    Firestormm Guest

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    Morning, I'm a bit tied up today, but will read all the comments and come back to any replies. Just popped in to post this rather interesting article from the BBC that I came across the other day.

    While it is in relation to DSM and mental illness specifically; it is also relevant I think to how important receiving a diagnosis and identity for any illness can be for the patient. Just by way of recognition of this fact.

    Also I seem to recall that the coding from WHO has a similar importance to the ones received from DSM in terms of healthcare and benefits - though I might be wrong. Anyway, I thought I'd drop it into the thread:

    DSM-5: What's in a name? Codifying mental illness
  8. Firestormm

    Firestormm Guest

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    Thanks for replying Alex :thumbsup:

    Do you not feel that 'CFS also known as ...' is now also as ingrained in the medical conscious that even a change to ME will still carry that 'stigma' of 'we are not sure what it is' i.e. the 'it could be all in the mind' meme that many feel stems from the entire psychiatric profession?

    I think that you might - from what you have said. What I think people would really like is a disease that is clearly understood, clearly recognised as being something 'physical'.

    So - yes - you could call it anything you like (as we both have); it is where it is placed in the medical lexicon and where every-single-medical-professional is forced to acknowledge it belongs; that will matter far more to those that feel this remains an issue.

    Like you said, science doesn't really care about that but patients want certainty - now. Or at least less uncertainty, and feel I suppose that an acknowledged name-change to ME would achieve this.

    In the absence of a cure, in the absence of specific drug therapy (or even with it); we as a patient community - and as individuals within it - will need the services of 'mind doctors' to help us cope. These doctors need to be specialists, to have experience of the condition (of the complexities and presentation of those patients with it); and apply their practices in a tailoured and professional manner.

    The attitude of those professions (collectively and individually) and their presence will not be affected by a name-change (as you said); but neither will it should our disease be acknowledged as a having a purely 'biological' cause and is subsequently so categorised.

    We will still all be living and trying to deal with a ravaged life and they and others will be trying to get us to effectively 'do more', to look differently at things, basically to change our outlook and generally 'interfere'. And they will remain an influence both in our private lives and in the scientific world.

    We can't change history but we can help improve upon it and maybe through better education and liaison this can happen.

    Be back later if I can. Thanks again :)
  9. alex3619

    alex3619 Senior Member

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    Hi Firestormm , yes I do think that ME has a huge negative legacy too, stemming from 1970. Indeed I have formed the view that it is largely that negative legacy that led to the creation of the term CFS itself, and the Holmes definition, as well as influencing the substantive lack of attention at the Incline Village outbreak, Londonville, etc.

    However there is a difference between saying ME and saying CFS to those who are largely unaware: the media, the public, the doctors who have not made up their mind yet. Its a political thing.

    One thing I have said for years though is that the name will not matter for very long. As soon as we change the name the story from the psychobabble cohorts will change, the spin machine will be active, and any advantage will be lost. What makes a sustained difference is the diagnostic criteria.

    What will make a huge difference is a reliable diagnostic or treatment biomarker, or a cure. I think there are now reasonable grounds to think we might have these things within my lifetime. There is cause for optimism.

    To my mind the name debate is largely a waste of time for advocates, though the diagnostic debate isn't. There are things we should be spending more time on, from assisting funding to medical research to helping those incarcerated against their will because they have ME and somebody thinks they have some unprovable psychobabble diagnosis.

    I have stated before that we need psychological support. What we don't need is experimental unproven diagnoses and treatments. Educating doctors is not enough. They have had the potential to be educated on this since before I was born, though the big scientific advances started about a decade ago now, in 2003, with the publication of VO2max testing and Peckerman's work on cardiac insufficiency. Education does very little to chip away at entrenched interests that are being taught and reinforced all the time.

    You are quite correct though Firestormm that we can liase and work with psychiatrists who are not heavily bound to psychogenic dogma. Many, and possibly the majority (some claim that but I don't see the evidence) are at least doubtful of psychogenic claims. One of the things I want to push for is greater involvement of the medical profession in working to clean up this mess. How to achieve that on a wide scale is the question.

    If the Rituximab trials are highly successful then this could be an important trigger for change, but it will only be the beginning. MS, diabetes, lupus, gastric ulcers - medicine never abandoned babble as the science came out that these were physical disorders. They just move on to the next unexplained disease.

    Alex.
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  10. Firestormm

    Firestormm Guest

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    Thanks for confirming what was said in this post Ember and your previous one. I certainly get confused. I know that medfeb mentioned that they had run it past some doctors in the reply on the page 6; but you probably want to hear from Mark.

    I hope very much that this meeting at CFSAC (?) will prove frank and comprise some of the authors behind these attempts to better diagnose (and research) the/these diseases.

    But you know what I am going to say, so I won't repeat further any previous thoughts; other than to say that I don't personally think we are there yet.
  11. Firestormm

    Firestormm Guest

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  12. Ember

    Ember Senior Member

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    I want the advocates to consult with the experts when they can't answer the questions themselves. Otherwise, I find it misleading for them to claim in their letter that “the key stakeholders – ME patients and ME experts – must be engaged in a full and open partnership to plan for and ensure implementation of this change. We are the ones that best understand this disease and will provide valuable input to these activities.”

    Mary writes that “the letter was in the works for about 6 months with numerous discussions across a number of organizations and individuals that included a few doctors and a number of long term advocates on how to frame the discussion and on what recommendations to make.” The International Consensus Panel position was published eight months ago. Why was there no consultation with the experts?

    Over the course of three weeks, I asked repeatedly whether any medical or policy experts were consulted. Mark responded:
    Mary answered, “You asked if we consulted a policy expert - we did not but we do recognize that there are huge policy issues to be dealt with which is why we included the planning recommendation.”

    Here now are the most recent responses: from Mary, “I am sorry that it took me so long to reply to your questions but I did try to answer your questions as best I could. I still need to reply to your post from yesterday;” and from Mark, “I will be trying to get comment from ICC contributors and authors on this matter in due course....” When is it time for the advocates to consult?
  13. Nielk

    Nielk

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    I signed the petition because I agreed to the fact that it is a step forward but, I do have many questions too. Actually the more I think about it, the more confused I get. Are we saying (by signing this petition) that we want them to accept the CCC and change the name to ME thereby voiding CFS altogether as an illness?

    So, what we are saying here is that anyone who does not fit the CCC criteria, will not fit in to any diagnostic illness?

    I did check what Ember say the ICC primer for physicians does state that:


    They are saying that if you only fit the CCC criteria and not the ICC then you fit into the broader CFS/CF category. Only those who fit the ICC criteria should go by the name ME.

    Are we to ignore the ICC?

    To me this is a confusing but, critical point. Take for example, Dr. Klimas. She was a principle of the CFS -CCC, the ME-ICC and calls her clinic the "Chronic Fatigue" clinic??????????????

    Are we talking about one, two or three separate illnesses here. Is there a very broad pool of ill patients who are suffering from all types of "fatiguing" illnesses? Let's imaging a very large circle with a middle size circle inside and a smaller circle inside of that. The large circle being CF the middle circle CFS and the smallest one ME? If this is the case and we say we want to change the name to ME. what are we really talking about?

    The fact that most clinicians, researchers and patient advocates seem to call "it" ME/CFS now means what?

    The real point I would like to make is that I too would have liked for us to have had a voice when this was in the making.
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  14. rlc

    rlc Senior Member

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    Hi Medfeb or Mark, there seems to be a feeling that there was not enough consultation with medical experts about this letter. Medfeb you have said

    Could you please provide the names of the few doctors, as this may help to provide some medical legitamacy to the proposal.

    Thank you
  15. Firestormm

    Firestormm Guest

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    Came across a comment posted on Facebook (IiME page but not by IiME) beneath the ProHealth article and the petition of support:

    I've just been through the Primer and believe the claim above is wrong, and out of context with what was written; indeed the Primer references critiques and indeed critiques itself, GET and CBT as generally practiced.There are many references to exercise throughout the Primer and concerns are raised, about a 'gung-ho' approach, as well as when and where assistance might be afforded. Same can be said about CBT for that matter.

    The 'six months before diagnosis' as laid out in the CCC is a fundamental difference from that prescribed in the ICC; from what I can recall. However, the CCC does indicate an earlier diagnosis might be possible, and indicates 3 months for kids.

    Personally, I think given the state of play that a period of time is needed before diagnosis during which exclusionary testing should be explored. The number of months - don't know how they arrive at 6 but whatever - also allows for anything else to resolve itself.

    Even if the ICC which is presumably preferred by the author of this comment, were to be implemented; I can't imagine that all the testing it lays out would be performed immediately. How practical - how common - is it for a person to experience an illness as complex as our own and receive an instant diagnosis anyway?
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  16. Ember

    Ember Senior Member

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    The petition may well serve the interests of patients diagnosed using the CCC, as may the ME/CFS Primer. The International Consensus Panel advises that patients diagnosed using the CCC "should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification."

    The ME Primer doesn't recommend GET/CBT, and no waiting period is required for the appropriate management and treatment of ME patients.
  17. Ember

    Ember Senior Member

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    Why has there been no apparent hesitation in using statements by ICC authors to support the letter and petition asking DHHS to adopt the Canadian Consensus Criteria? On June 6, Mary wrote:
    Advocates have not obtained Dr. Carruthers' permission to use his name in support of their letter or petition to DHHS, and without having consulted with any ME experts, they have no basis as yet for suggesting that experts would participate in the planning and execution of their proposed transition. I would hope that Phoenix Rising would distance itself from these references in the campaign.
  18. biophile

    biophile Places I'd rather be.

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    I have not read all this thread yet, but I noticed the issue of PEM vs PENE and CCC vs ICC. The CCC document is long and is therefore able to include detailed descriptions of post-exertional symptoms, but it seems all that is required to actually meet the criteria for it is some post-exertional fatigue or malaise. Whereas the ICC lists 5 characteristics of PENE, which I assume are all compulsory (?), therefore making the ICC significantly stricter in that regard.
  19. Firestormm

    Firestormm Guest

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    Morning Bio :)

    Out of interest, did the ICC board ever predict what % of the population they expect will actually meet their criteria and therefore what prevalence their version of 'ME' might actually confer? I forget.

    Thanks.
  20. Magnolia

    Magnolia *****

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    Ember, you ask some great questions. I would really like to have some answers, especially an answer to this one. It makes no sense that they are using statements about the ICC to ask for the CCC, unless they are purposefully trying to confuse people..

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