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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. Ember

    Ember Senior Member

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    Thanks!
  2. Mark

    Mark Acting CEO

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    Ember, both medfeb and myself are extremely busy at the moment, there has been CFSAC as well in the last week which has taken up a lot of time for both of us. I've got bookmarks for your questions and replies and I'll get to them as soon as I can. It might help if you restate the unanswered questions to save medfeb from going through what has become a long thread. The only remaining question I can recall that I haven't answered is:

    What medical and policy experts were consulted in the drafting of the document?
  3. Ember

    Ember Senior Member

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    As Mry said, she'll need to read the thread for context.
  4. medfeb

    medfeb Senior Member

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    Hi
    I promised a response and am sorry I haven't gotten back to you sooner. I'll try to respond to comments and questions but let me know if I miss anything. Sorry its such a long post. If it should be split up, let me know and I will talk to the moderators

    Enid - you wondered if the CCC is too complicated for the average doc. That was raised by Dr. Unger at the recent CFSAC meeting to which Eileen Holderman responded that doctors were smart enough to figure it out. That said, driving agreement on the biomarkers as Maes suggests and on the core symptoms as Jason discusses will do a lot to focus doctors on what to look for first. But right now, doctors, at least in the U.S., do not even recognize PEM/PENE and so recommend exercise - actually insist you keep exercising in spite of the relapse

    Bob raised an issue about the implications for patients who do not meet the ME criteria. I know Mark already responded to this but I just wanted to reiterate that this is really important - both for the sake of those patients and to unravel all the conditions that have been stuffed into the "CFS" bin. There must be a plan and grandfathering to help patients.

    Ember - you asked about the process. Mark's description of the process is correct although I will say that the letter went through more than a few revisions. As I think we've all seen in PR threads that have tackled the definition before, it is not an easy issue to discuss because of how convoluted all the definitions have become and because the term "CFS" means so many different things to people. As a result, 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. All of the signatories were given the opportunity to provide input as did others. The final product was a result of that iterative process. 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.

    Regarding reaching too far in calling for the dismantling CFS - yes, "CFS" is in ICD-10 in the neurological chapter. But we all know that "CFS" is also defined with Oxford Fukuda which is clearly not neurological. And "CFS" is also called out as the poster child for the somatic symptom disorder in the DSM and equated to mental illness categories in general. Further, in the U.S., "CFS" continues to be listed, even today, under chronic fatigue in the ICD-10-CM and not as a neurological condition as it is in the ICD-10, in spite of requests to fix this error and in spite of this being against WHO standards. Good science requires precision on what you are studying and when "CFS" continues to be defined to mean all these different conditions, it no longer means anything. Its sloppy science that is not being fixed and the letter signers did not think that should be ignored.

    One comment about heterogeneity and research into subtypes - we know the heterogeneity of ME is real and we need to have research to understand it. But I think this is very different. I think the "heterogeneity" of "CFS" - as "CFS" has been defined with all these varied definitions including Oxford CFS - is not real - its an artificial creation of lumping all these diverse conditions together.

    Regarding why CCC over ME-ICC - that's a tough one and one where that are different viewpoints as a number of threads on this forum have shown. There is alot about ME-ICC that we all like, including the fact that it reflects what was learned over 8 years since CCC. But to the point made by many posters on this thread, its relatively new and it isnt referenced in studies yet with the exception of the studies by Maes and Jason examining the definitions. I dont know of doctors saying they are using it but there are doctors saying they use Canadian. Then there is the CFSAC recommendation to hold a definition meeting to reach consensus on a definition starting with the Canadian. And both Maes and Jason have raised a concern about the inclusion of too many people with psychiatric or somatic symptom disorders. Beyond that, both Jason and Maes would say that whatever definition is picked, additional operationalization and especially reaching agreement on biomarkers will need to be done. So the choice ultimately became one between accepting the continued use of Fukuda or advocating for the change that we thought could be made at this time. This is a baseline definition intended to provide a better baseline so we can start helping patients and stop burying ME in the middle of all these diverse, unrelated conditions. Whatever is picked will need to be evolved to Maes' and Jason's points.

    Bob mentioned the idea of subsetting Fukuda CFS the way Maes did. I love the ideas in that paper that you referenced, Bob, and think Maes has done alot to help advance the field. The challenge that I personally grappled with is in this paper is that while Maes separates out chronic fatigue, we still have researchers and clinicians using Oxford (essentially CF) and calling it CFS. WIth all the publicity around those trials being pumped onto the airwaves, we end up with doctors and our families thinking ME patients are just deconditiionred or suffering from 'fear of movement' or some other such silly condition. This is killing patients and has gone on too long. We need to move the football down the field even if we cant make a touchdown. (hmmm - or is it 'score a goal')

    Or in the words of Alex3619...
    "We are sick of being the tortoise. This strategy is the bulldog strategy. Take a big bite, don't let go, and when the time is right take an even bigger bite."
    Roy S, Bob and Valentijn like this.
  5. medfeb

    medfeb Senior Member

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    One other thing I wanted to add...

    A number of you have asked about being able to add your names onto the May 12 letter to DHHS. Erica Verillo, Donna Pearson of MassCfids and I created a petition to capture additional signatures. Please consider signing that petition and asking your friends to sign as well.

    http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

    Thank you
    Mary
    Bob and mezombie like this.
  6. Firestormm

    Firestormm Senior Member

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    Thank-you very much for this, medfeb. I have read the letter and feel a need to open an 'old chestnut' if I may, and that is one concerning the name.

    I don't think you and I have 'spoken' before, so you should be aware that I feel Encephalomyelitis was the wrong name to have adopted in the first place and remains so today; even/especially given the current state of research; so I am not without bias :)

    My question is however: the Canadian Consensus Criteria did not - to my knowledge and do please correct me if my memory has failed - recommend using encephalomyelitis. But you are circumventing that in your letter to the DHHS without explanation, and I wondered if you had considered or even realised this?

    Unlike the ICC which does recommend encephalomyelitis - for the very reasons more or less that you actually do outline in your letter; the CCC 2003 states:

    Indeed the CCC does not - again from memory - spend any particular time in debating nomenclature, and yet you are asking the DHHS not to adopt ME/CFS (which I would suggest is a more reasonable compromise at this time) - but to go for broke with encephalomyelitis when even the CCC does not do this.

    And the same argument occurs when you referenced the 'CFS/ME Primer' in your letter. This is 'CFS/ME' - the Primer acknowledges the 'two' as one - and yet you are trying to say simply drop CFS and make the same document, covering allegedly the same patient population; apply now to 'encephalomyelitis'.

    Also the CCC was published in 2003, following a meeting a couple of years earlier I think - so what research has come out since this time that you feel supports 'encephalomyelitis' - applies to a patient population and has been confirmed through widespread testing? What research has overridden even the CCC panel's opinion at that time?

    The WHO entry appeared in 1969 (Gods alone know how this was achieved - I mean the practicality of it based on that single Lancet paper. Sure wouldn't happen today).

    I would suggest that it is the WHO that needs amending: not now perhaps but when the science confirms and applies whatever Bio-markers are found. And this could mean that encephalomyelitis is found not to apply to any one of us. We could be looking at a completely new medically-termed name for whatever is 'our' disease.

    Another aspect I wanted to highlight:

    The CCC were arguing that the Fukuda criteria were designed FOR RESEARCH and not Clinical diagnoses; and that there should be a different set of criteria for Clinical diagnosis i.e. the CCC. You are suggesting in your letter that the CCC should apply to Research AND Clinical diagnosis.

    This might be considered something for which the CCC was never intended to do. I might be wrong - I realise events since then have lifted the CCC to greater prominence - but your letter could perhaps have dealt with this potential obstacle.

    I believe the DHHS could be persuaded at this time to adopt 'ME/CFS' - in-line with the UK* - on a more formal footing; and acknowledge that there is not yet sufficient evidence to 'separate' the always presumed 'two' conditions (something the patient community would need to accept also). But in the letter you are using CCC to support something it wasn't originally intended to support. Namely, a criteria for clinical and research settings.

    The CCC authors also acknowledged:

    This just made me think that the CCC were still dealing with reported symptoms in 2003 and not really anything you could test for. I know the ICC attempted to make improvements in this area - but the CCC was (as a clinical tool) still relying on the doctor asking the patient; and excluding other possibilities.

    I just wondered if in discussions with authorities - today - about a need to change the means of assessment in clinical practice and in research: we shouldn't be proposing something more definite. More testable. I wondered if this will not prove another obstacle to adoption.I don't know.

    There is an overriding assumption that drives all these 'drop CFS' arguments. I mean I can understand that to patients and others it seems simple enough - drop the name 'CFS' adopt Encephalomyelitis and all the bad crap we feel we endure will go away. Nice and neat with a red-ribbon tied into a bow. But we also know it isn't going to be that easy - even today and I don't think your letter acknowledges our appreciation of this fact.

    Only when we identify clear Bio-markers (that cause brain/spinal cord inflammation) - assuming there are any and that they cause significant impairment and occur throughout a defined patient population. These markers would need to be accepted and applied to a tested population, then included within a specific clinical AND research criteria. Such a finding/s may render the CCC, as you advance it, worthless; and encephalomyelitis, may only apply to 0.001% of the population.

    Again we never acknowledge this in these discussions. I think that to advance the notion that encephalomyelitis is the 'correct' choice of name for the disease, for a criteria that aims to (without Biomarkers) define the disease - and that wasn't intended to do this - is still grasping at straws. And yet we take on board this approach because it is the name we simply prefer over the other alternative.

    We will still be up against the question: 'Prove it'. And we can't. We can't prove inflammation is applicable to the patient population as we understand it. This is the same very unanswerable question that led to the inclusion of 'CFS' - essentially - and to the 'focus on fatigue' (or the broadening of what is and isn't 'ME') in the first place.

    If the DHHS were to suggest that they 'tighten' the existing criteria and include PEM as a pre-requisite requirement, would that be a compromise you could accept?

    I'm not saying that this will happen either because again we are up against the 'How can you prove PEM?' dilemma - not to mention having it properly accepted as a medical term (I don't believe it is yet?).

    But I am left wondering just how entrenched (you quoted Alex and his dog analogy) you and those who signed the letter really are going to be over the name-wagging-the-dog issue?

    Despite the length of my reply (and the fact my recollection of what has and has not changed about the CCC and about the favoured use of encephalomyelitis in recent years by those who wrote the original CCC - probably being quite wonky) - I do wish you well with this attempt.

    And indeed I do support the CCC and 'ME/CFS' as the better approach to Fukuda and 'CFS' on it's lonesome. However, your focus on nomenclature is potentially a large stumbling block, in my humble opinion.

    Incidentally, I do realise that issues pertaining to nomenclature are really - perhaps more importantly - addressing the categorisation of our disability. Again this wasn't raised in the letter. We feel neurology is more appropriate and are unhappy with any link to, well, something else of a 'mind' nature. However, adopting CCC with it's ME/CFS would I think be a good compromise at this time.

    [*note: in Table 1 of your letter you erroneously state that the NICE Guidelines use the label CFS when in fact they use CFS/ME and refer to encephalomyelitis as well as encephalopathy as 'also called' which places them next to CCC in this respect.]
  7. Ember

    Ember Senior Member

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    Thanks for responding to my questions. Unfortunately, your answers don't address a number of the concerns that I've raised. You've overlooked the fact that your calling the CCC an ME definition only adds to the confusion over nomenclature that advocates have previously asked DHHS to resolve. No medical expert seems to have been consulted.

    You write, “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.” However, the planning recommendation in the initiative directs DHHS to:
    Though the initiative calls for adopting the CCC as a “baseline” or short-term solution, this planning recommendation isn't workable in the short term. The ICC, on the other hand, does provide a workable implementation plan.

    With respect to the ICC, you write that “both Maes and Jason have raised a concern about the inclusion of too many people with psychiatric or somatic symptom disorders.” Please note, however, that the ICC explicitly excludes both primary psychiatric disorders and somatoform disorder.

    You add too that whatever definition is picked “reaching agreement on biomarkers will need to be done.” Notice, though, that the ICC references more biomarkers through its ME Primer than any other available definition:
    Notably, the ME Primer includes the 2 consecutive day CPET, whereas the ME/CFS Guidelines and the ME/CFS Primer do not.

    CFSAC may have recommended using the CCC as a starting point in discussing a clinical and research case definition. But before you endorse their rationale, consider the confused discussion that gave rise to that recommendation. Certainly the government response to date gives no reason to believe that having the CCC adopted is an achievable goal. Last week, “Dr Peterson lamented: 'CFSAC has just voted to put off the clinical and research definition question for 2 more years.'"

    At the IiME Conference, Dr. Peterson “emphasized the fact that a single set of criteria needs to be used internationally.” Twenty months ago, he described the ICC this way:
    You state now that “driving agreement...on the core symptoms as Jason discusses will do a lot to focus doctors on what to look for first.” But Dr. Jason possesses no medical expertise. Among its management and treatment guidelines, the ME Primer advises medical practitioners: “The pathophysiology of ME and laboratory findings must be reflected in all treatment/management.... Prioritize greatest symptom concerns and dysfunctions in order to determine the best treatment strategies.... Identify pathological components of symptoms and target treatment at cause.”

    In writing of heterogeneity in ME, you make no mention of our need for more selective research criteria. The International Consensus Panel writes:
    Given our urgent need, outdated criteria can't be considered acceptable. The CCC were never intended as research criteria. This initiative is selling us short.
  8. medfeb

    medfeb Senior Member

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    Firestormm

    Thank you for writing and nice to 'meet' you.

    On the name - What label to use was not easy. The paper tried to make it clear throughout that it was talking about the multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy production systems and has the hallmark symptom of PEM/PENE. Unfortunately, that's too long to say every time you want to reference the disease. So ultimately, the paper needed a label to use - ME, ME/CFS or some other label. So the paper uses ME because "The name myalgic encephalomyelitis is still used elsewhere and is used herein to refer to this disease and to clearly distinguish it from the non-specific term “CFS”." The last point was a particularly important as this neuroimmune disease is not the same as Oxford CFS.

    Regarding whether ME is the best name or even an appropriate name - your concern is valid and I expect that the disease name will evolve as we learn more.

    But this paper is not trying to make a judgement on whether ME is the best name or not. I know for some, the name is important because of the stigma that has been associated with "CFS". But I really think the criteria are much more important. If the disease were called 'Spencer's disease' instead of "CFS", it would still be a mess because the same term has been used as the label for so many diverse criteria. How can all the conditions that satisfy Oxford be the same thing as the neuroimmune disease with its characteristic PEM/PENE described above? They are not, anymore than Oxford CFS is the same as multiple sclerosis. Yet, one label is used for all of them. It would be like saying that a Macintosh Apple (the fruit) and an MacBook Air are the same thing because they are both called "apples". IMO, we need different labels for very different conditions and diseases - whatever the appropriate labels are - or else everyone ends up confused. In some ways, its a simple vocabulary problem - like a reverse babel where the same word means different things and no one can communicate without getting all mixed up.

    Regarding the need for separate research and clinical definitions - I agree that we need both. The paper is not as explicit on that as it should be. Fukuda was originally designed for research and is being used for clinical. CCC was for clinical but is also being used in research. Like the need to operationalize the criteria and drive broad agreement on which biomarkers will be used, there needs to be some work done to establish both the research and clinical definitions.

    You make great points about the need for more testable biomarkers. There are a number of them as people like Fletcher and Klimas have repeatedly said at the CFSAC, as the ME-ICC points out and as I know they use in practice. But we also know they still are not 'accepted' more broadly and IMO, that has to be a big focus to get them validated/accepted broadly. Maes' article drives that same point. Even as accepted as Snell's work is, the CDC is using a different approach for assessing PEM/PENE in the multi-site study - I know it doesnt include a 2 day exercise test and I do not know if the exercise test includes the gas measurements that Snell says are needed to properly assess the functional impairment in this patient group.

    about the possibility of getting PEM accepted as a hallmark criteria in Fukuda CFS - the devil in the details is still in what do you call it, what happens to Fukuda CFS patients that do not have PEM and how will that "CFS" be distinguished from Oxford "CFS" - others probably think of other details to be managed as well. Would still need to operationalize it and get biomarkers for PEM itself agreed

    I agree with you that the letter could have done a better job of articulating the degree of complexity that will be involved. IMHO, the situation is a huge mess and it wont be easy to unravel.

    Thank you, Firestormm for the comments and for the correction on the table. I will update that table.
    Firestormm likes this.
  9. Ember

    Ember Senior Member

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    I asked about the process driving this initiative and about the opportunity for input. Then I waited three long weeks for a response. That response didn't address the concerns that I had raised, and it wasn't posted until after a petition had been launched soliciting signatures. Sometimes actions speak louder than words.
  10. alex3619

    alex3619 Senior Member

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    The validity of ME as an unbiased objective name for our condition died in 1970 with the paper by McEvedy and Beard that claimed the Royal Free Hospital outbreak was mass hysteria. Going back to ME does not resolve all the issues, though it is a start.

    Recent republishing of a book by Ramsay apparently shows that the McEvedy and Beard claim was intended to rule out hysteria, but it went the other way ... Ramsay was essentially tricked. However I have not read the book, so cannot be sure of this claim.
  11. Firestormm

    Firestormm Senior Member

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    Alex, let's say for argument's sake that Encephalomyelitis were to be adopted (re-adopted) as the nomen of choice and applied to all those meeting the CCC criteria; enabling a clear link to the entry in the WHO as a neurological disorder/whatever.

    What happens to all the research to date that has been completed on Chronic Fatigue Syndrome using Fukuda? You know all that great research that we actually do approve of - and all that great research that is happening NOW?

    How would that be resolved. How can one effectively draw a line and yet still in effect say 'Well, we still think those studies are applicable even though we think they apply to a completely different disease?'

    Just one of several/many practical aspects to this kind of 'easy' solution advanced by some folk that never seems to get the consideration it deserves. These are obstacles that 'science' and the 'establishment' will throw up as obstacles in need of consideration.

    I'm not having a go at you my friend - merely posing the questions:

    What would happen? How could this be resolved to science's satisfaction without any Biomarkers that actually confirm/identify a unique disease?

    'tis but one of the reasons why I think we can only hope to get USA to acknowledge 'ME' by moving to 'ME/CFS' as per the CCC proper until such time as science better determines any specific differences and can apply them definitively to patient populations and move us beyond report-based symptom clusters.

    And I repeat. This is less about the name than it is the categorisation of encephalomyelitis. As medfeb alluded to above - even if it were called 'Zombism' but had that classifcation - and to some extent, history - there would be similar efforts to drive it's recognition.

    Here's another one. What if the science determines a neurological/nervous system categorisation is actually incorrect? What if 'this disease' as applied to the majority of those meeting CCC is far better categorised in the Immune System area - or somewhere else?

    You don't need to answer these questions. I'm just placing them out there once again....

    Have a good one :)
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  12. alex3619

    alex3619 Senior Member

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    Questions are good Firestormm . I like questions. A lot. When something is important, and this is indeed an important topic to us, then we need to think of all the angles. I hope to post more a bit later tonight, I have thought about many of the issues you raised but a lot of the result is yet more questions. If these things were easy and straightforward we would not be in this mess.
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  13. taniaaust1

    taniaaust1 Senior Member

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    None of that Fukuda CFS research is "great research" as simply it will be wrong if applied to ME or to CCC CFS patients (unless they also choose their study participants based on the CCC CFS defination too.. some studies who have smart researchers have used both definitions together), all it otherwise can do is give clues of areas which need more studies done now usng the better definitions.

    This is why Ive been harping on for years that we need to focus to change the definition, so we can be doing good studies as so many studies will end up being tossed out when things are finally sorted out and defined more, all the funding gone into them wasted. ME and CFS will be split sooner or later hence CFS studies being done now in future will be useless for ME due to both groups being in them, even the CFS studies for the CFS people and not the ME people, wont be accurate no more..once the ME group of patients is removed.. say that's 25% of people in those studies which shouldnt have been in them which affected the "CFS" patient group results)
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  14. taniaaust1

    taniaaust1 Senior Member

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    That's the way I think of it too. I just see the ICC as being a more up to date version (with the proper name back to ME) then the CCC.
    Valentijn likes this.
  15. Firestormm

    Firestormm Senior Member

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    I am afraid I must disagree and I believe that all those scientists (including clinicians) will agree with me. You will need to maintain a link to research that has established - presumably - the patient-preferred 'biomedical' nature of what was in the USA and let's face it, everywhere else, known as and diagnosed as 'CFS'. Science will need to maintain clear links with 'something' and that something will encompass, everything that has been published to date.

    We can't abandon it all and say 'None of that applies anymore!' and then start from scratch. I don't believe it will work like that and I don't believe anyone really wants it to.

    There will be - there are - individuals and groups with 'different things wrong with them' biologically, for sure. But we aren't yet in a position where enough evidence or opinion or markers have been applied to a distinct patient population - to prove a distinct disease exists. And not a disease that is by nature centred around neurological inflammation; or neurology exclusively - or anything exclusively come to that - unless you isolate an individual opinion. A Multi-systemic disease is still the supported view.

    No. What is desired is a clean break from psychiatry. That's what is always driving this and I don't think that as a patient community we have really thought beyond how easy it seems to be to achieve. And there is a danger - a proven danger if the Scottish experience is anything to go by - of being too dogged and unwilling to compromise. Hence my question above - what compromise are we willing to make? Are we willing to try and understand why this cannot occur? Will we allow others' opinions to affect our dogged determination in this matter?

    Will we only acknowledge research that has carried the title 'Myalgic Encephalomyelitis'? What about the research that is presently being conducted? What about 'ME/CFS' research? Will all the current scientists and clinicians who we greatly appreciate transfer their efforts to this distinct disease?

    What about research that uses or has used Fukuda and one of the more preferred measures or one that isn't preferred; but has reached a conclusion 'we like'?

    What about research that has built up our knowledge using patients today? Patients from the past - the outbreaks that gain everyone's attention? Patients like me - like you?

    Which study - that we might think is applicable - actually says '[Insert name] has ME and not CFS?' I mean whenever we have these discussions - it is ever assumed that we all have the 'ME' for which there will be drug treatment and not the 'CFS' which has 'only' management therapy.

    But science doesn't make assumptions based on a criteria that is still based (in practice) on reported patient experience and symptom clusters - and what are folk going to feel like when they get the result saying - 'After all these years of your campaigning, after all the firm belief and commitment, I am sorry to say that you don't have this version of what we consider to be ME. At least not today.'?

    Sorry. I went a little off piste there:

    We have to ensure continuity in science I believe. Consider references - as a 'basic' example - how would this work if you effectively have 'discovered' a new disease that was once considered a part of another? Particularly, when we are at the delicate stage that we are now?

    Unless your studies lead to the conclusion that myalgic encephalomyelitis, as a distinct neurological disorder, is actually - provably - present in the community of patients diagnosed formerly with e.g. Fukuda; I can't see how it will work.

    And until those necessary can be better persuaded to split the funding for our disease in two - and explore this notion; I just cannot see it happening outside perhaps of a privately-funded small-scale study or two which will not make an impact in 'the corridors of power' - for want of a better collective phrase.

    The DHSS can and should adopt ME/CFS. This would 'nod' to the category of neurology/nervous system in WHO - far more than they do at present; and reinforce this 'link' without breaking association with existing and past research. UNTIL such time as the ongoing 'stratification' studies effectively tease us all out into separate groupings.

    When it comes to criteria, well that's more involved again. I actually think that DHSS/CDC/Whoever are better off coming up with their own. Better than NICE perhaps - tighter - but cut right across all the various ones out there. Have one single criteria - yes a compromise - if it is considered necessary today. Right now. If it is believed it will actually make a difference in terms of diagnosis, treatment, and research.

    I freely admit I know diddly-squat about the actual methodology involved in doing what is being advanced as a notion: 'creating' encephalomyelitis as a distinct disease from chronic fatigue syndrome. But surely, despite all the conspiracy theories, the simple fact it hasn't happened is reason enough to think it either isn't simple or simply isn't possible.
  16. Firestormm

    Firestormm Senior Member

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    I'm just going to throw a couple random ;) questions out there:

    If Chronic Fatigue Syndrome (instead of myalgic encephalomyelitis) had it's own entry under neurology/nervous system in WHO - would we still be calling for (what is from one perspective), a name-change? Would it be as fundamentally important?

    As I asked above: Has anyone ever tried to engage the WHO about any of this? If WHO initiated a change - wouldn't all those 'in the corridors of power' have to adopt it? Will WHO not review the evidence?
  17. Firestormm

    Firestormm Senior Member

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    I AM going to take a break :)

    Prohealth just published this article about the above letter [link is embedded below] dated 6 June 2013:
    Fatigue is Not a Disease

    The third paragraph concludes:

    Will read it all later :)
  18. medfeb

    medfeb Senior Member

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    Firestorrm - WHO does have a code in ICD-10 for CFS at G93.3 in the neurological chapter. This is the same code used for ME. However, the U.S. version of ICD-10, the ICD-10-CM, has placed CFS under 'chronic fatigue' in the Signs and Symptoms chapter thus removing the association with neurological and emphasizing fatigue. Its against WHO standards to have codes move around like this. A request was made to comply with WHO standards but so far, it remains under chronic fatigue.

    That's a great question and also really tough because I expect we all have different answers to that one. It also depends on what the option is. Would it be enough if PEM were considered mandatory but it were determined with a patient reported tool - and which tool would be used? But to your point - we undoubtedly will need to find a compromise to move forward.

    Ember
    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.
  19. Bob

    Bob

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    England, UK
    Mark
    Ember
    I think Ember's conclusion that the ICC panel wishes the CCC to be considered a 'CFS' definition rests on questionable logic...
    Ember shows us that the ICC panel proposes that patients who do not fulfil the ICC are assigned a 'CFS' diagnosis. But that does not necessarily mean that the ICC panel wishes the CCC to be considered a 'CFS' diagnosis, because, when making such a proposal, the ICC panel may (please correct me if there is evidence to the contrary) have in mind that all CCC patients will be included in an ICC diagnosis, with at least an atypical ME ICC diagnosis. If that is the case, then all CCC patients would be ICC ME patients. (But even if less than all CCC patients fulfil the ICC ME criteria, but still a majority satisfy ICC, I can't see why the CCC would be called a 'CFS' criteria.)

    So, from the ICC panel's statement that Ember has provided, I do not think it is possible to conclude that the ICC panel wishes the CCC to be a 'CFS' diagnosis.

    Indeed, this conclusion is not consistent with what either Ember or the ICC panel have said in the past, where Dr Carruthers has clearly indicated that the CCC is an 'ME' definition:

    WillowJ and Valentijn like this.
  20. Ember

    Ember Senior Member

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    The most recent statement by the International Consensus Panel makes it clear that the ICC replaces the CCC. It empties the CCC of all that belongs with the ICC. Patients diagnosed using broader or other criteria for CFS or its hybrids (i.e., the CCC) are to be reassessed using the ICC. Those who don't fulfill the ME criteria are to remain in the more encompassing CFS classification.

    The transition from the CCC to the ICC has been likened to evolution. It involves moving beyond the past. If you look to the past, you must rely on outdated statements and outdated definitions.

    An ME/CFS diagnosis is not what it used to be because the CCC is now an outdated definition. What's left of it, according to the ICC panel, belongs with CFS.

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