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Now that CFSAC's over, what should we do?

Discussion in 'General ME/CFS News' started by Sasha, Jun 15, 2012.

  1. Bob

    Bob

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    Good points Mark, but I should have been more clear that that was my simplistic (and possibly very incorrect) interpretation of what I've heard/read, and I might have it got it completely wrong. I should not have mentioned 'overlapping symptoms', because I can't remember if that's what I actually heard or read. Sorry for the confusion.

    It sounds like they might be taking quite a sophisticated approach, but we would need to get the detailed information, because I don't know what their exact approach is.

    Of course, if their starting point is to look at 'CFS' patients, then that also brings a certain amount of baggage with it.

    That might be what they are doing. I don't know.
    Everybody please unread the bit where I said 'overlapping symptoms'. :confused:
    I'll correct my previous post.

    Oh, sorry, I did write a bad post... I'll correct that bit in my previous post as well.
    I seem to remember reading somewhere, that the CDC were thinking about a name change.
    And I seem to remember the term 'ME' popping up, so this could potentially mean 'CFS/ME' or 'ME/CFS' or 'ME'.
    But my memory is notoriously bad, and I may be completely imagining this, and I'm not sure if the CDC have actually mentioned the term 'ME', or someone else did.
    Sorry! I've corrected my previous post now.

    Yes, thinking about it, it seems it might be more important that we all get involved with the CDC's process rather than the CFSAC's process, with regards to diagnostic criteria? Or at least get the CFSAC members to get on the CDC's case? We could provide both the CFSAC and the CDC with information. Or lobby the CDC.
  2. floydguy

    floydguy Senior Member

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    I completely agree. Any definition change going forward should require objective testing for confirmation - at least for research purposes. PEM/PENE could just end up being a leading question like "Do your symptoms get worse after exercise?"

    I'd disagree on the questionnaire part. Patients should have to answer questions in a written format or something. I find most questionnaires to be almost useless. There seems to be a ridiculous notion that if one tallies up responses, crunches the numbers in Excel and makes pretty graphs there's something "scientific" going on. With such a heterogenous condition with people at varying levels of dysfunction in different areas I am really doubtful of meaningful results.
  3. Bob

    Bob

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    Ah, this is a more helpful explanation... I've found my source of info... It's a virology blog by David Tuller...
    http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

    Here's the bit that I was referring to:

    Unless I misunderstood, I think the CDC chap at the CFSAC meeting confirmed that the CDC are actually working on the diagnostic criteria themselves.

    And Jennie has identified the CDC's ongoing work in her blog:
  4. Ember

    Ember Senior Member

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    I fear that this nightmare scenario is being blindly ushered in by us patients, now on record with the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee claiming the “equivalency or close similarity” of ME and CFS. Patient groups (including PR) either directly or implicitly argue that the ICC supports our position, yet we contradict its authors on this very point.

    We may be our own worst enemy. We bemoan the utter lack of progress for 25 years, but we blithely risk setting ourselves up for more of the same. Whom will we blame?
    rlc and shannah like this.
  5. Bob

    Bob

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    I've just re-read my earlier post, and noticed that I discussed some areas where we could possibly push for action with the CFSAC... So I just thought I'd summarise them, in case anyone thinks it's a good idea to follow up:

    1. Ask the CFSAC to recommend that either the CCC or ICC, or both, are always used in government funded research into CFS or CFS/ME or ME. (They would probably have to be used alongside Fukuda, considering restraints on government funding, but that might be preferable anyway in order to better understand different cohorts.)

    2. Ask the CFSAC to ask the CDC for exact details of their diagnostic criteria project.

    3. Ask the CFSAC to ask the CDC to engage with patients and patient advocates when creating the new criteria.
  6. Ember

    Ember Senior Member

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    You quote Dr. Unger:

    Shouldn't we work on achieving consensus between patient groups and the scientific community (specifically between us and the ICC consensus panel) before we brazenly invite ourselves into the CDC process for creating consensus on new criteria?

    So far, our effort at PR consensus here has been derailed primarily because we want to keep our patient community "united." We seem to believe that unity for strategic purposes is inconsistent with naming subsets. We are confused. As far as I know, patients are never involved in developing case definitions.
    rlc likes this.
  7. Ember

    Ember Senior Member

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    Before making this request, shouldn't we publicly agree with the authors? Will we be taken seriously otherwise?
  8. WillowJ

    WillowJ Senior Member

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    I have actually seen both models work (US/UK style Parliamentary system and Swiss style with a small group of equal members). As long as the group members are committed to collaboration and flexible enough to take on advice from others, and there's a clear structure about how (and how promptly) decisions are made and what constitutes a quorum, it's not necessarily mandatory or better to have a "president". There may be circumstances in which it is useful, but it's not always better.

    I have not yet read all the thread, catching up here (been crashing a bit since CFSAC), sorry if this reply is out of place...
  9. lnester7

    lnester7 Seven

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    That explains the CDC study I just got into. It has all the right questions on symptoms. It was very similar to the one used at Klimas for new patients, the only thing I didn't like about it is not clear on the sleep questions, if it is on medication or without it. But I was happy they were asking the right questions to a CFS patient.
  10. WillowJ

    WillowJ Senior Member

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    aside from website/toolkit (remove promotion of CBT/GET/professional counseling; stop saying CFS is difficult to distinguish from depression), I see several possibilities:

    () stop using 'empirical' surveys

    () end association with Barts, Kings, Emory, Mayo, and any other proponent of the (bio)psychosocial school (e.g. no replacing them with Nijmegen! ;) )

    () remove all information from website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS (preferably, redact published articles or change nomenclature from "CFS" to "fatigue", "idiopathic fatigue", or "chronic unwellness", being sure to correct descriptions and citations so it no longer appears the articles are discussing ME/CFS)

    () give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases

    () hold state of the science conferences (the kind with literature reviews prior; restrict the literature reviews to exclude Oxford, 'Empirical') as required
    alex3619 and CJB like this.
  11. Ember

    Ember Senior Member

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    We don't have any exact details, of course, but I'll post this description in case it helps to remember what Dr. Unger said about the diagnostic criteria project at the November CFSAC meeting:
  12. rlc

    rlc Senior Member

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    Hi all, RE Embers comments

    I fear that this nightmare scenario is being blindly ushered in by us patients, now on record with the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee claiming the “equivalency or close similarity” of ME and CFS. Patient groups (including PR) either directly or implicitly argue that the ICC supports our position, yet we contradict its authors on this very point.

    We may be our own worst enemy. We bemoan the utter lack of progress for 25 years, but we blithely risk setting ourselves up for more of the same. Whom will we blame?



    And

    Shouldn't we work on achieving consensus between patient groups and the scientific community (specifically between us and the ICC consensus panel) before we brazenly invite ourselves into the CDC process for creating consensus on new criteria?


    So far, our efforts at PR consensus have been derailed primarily by our wish to keep our patient community "united." We seem to think that unity for strategic purposes is inconsistent with identifying subsets. We are confused. As far as I know, patients are never involved in developing case definitions.

    Ember is raising extremely valid points that are at the heart of this issue and unless the patient community can come to an understanding of these issues it will continue to be its own worst enemy as it has been in the past.

    In the past it has been understandable that the patient community has been easily confused about what stance they should take, due to misinformation put out by government organizations and some leading CFS doctors and researchers, and CFS organizations, but this situation no longer exists, and everybody needs to rapidly catch up with the new information and act accordingly or no progress will be made.

    It has long been believed by large segments of the patient community that ME and CFS are basically the same thing and the names have been used interchangeable as if it is the same condition and even combined to form ME/CFS or CFS/ME. And they have argued that CFS definitions should be changed to include the more serious symptoms of ME and the name changed to ME. These beliefs have caused utter confusion and a complete failure of all patient lead activism to achieve much useful for the past 25 years, simply because these beliefs are based on wrong scientific and medical information.

    The ICC changes all of this; The ICC states that ME and CFS are completely different! A fact that the patient community must accept, and advocacy must be based on this fact. Dr Carruthers has also recently stated that ME is a rare condition and only makes up 10% of the patients lumped together in the ME and CFS groups. The ICC is backed up by 25 of the leading researchers in this field and corroborates what has been said for a long time by the like of Dr Byron Hyde. The stance of patient groups including PR that ME and CFS are the same condition is totally unsustainable in the face of the new information in the ICC and must be abandoned immediately.

    Another point that I have noticed since the ICC has been published is that a lot of people are not understanding how the scientific process works, in that when the authors of one work on a subject publish a new work on the same subject, the new work supersedes the old work and the old work is redundant and not to be used. The principle authors of the ICC are the Principle authors of the CCC. Therefore the ICC replaces the CCC and it is not to be used because it is out of date. The authors of the ICC are saying that the CCC is wrong because it combined ME and CFS to create ME/CFS, they are now saying that ME and CFS are different, so therefore the term ME/CFS no longer exists according to the creators of it, and should not be being used by anyone.

    This is an extremely important point because, in the past not only have we had the majority of people saying that ME and CFS are the same, they have been using a multitude of other names for it which causes confusion, often using CFS or ME/CFS or CFS/ME or CFIDS as if they are names for ME. It is extremely important that people use only the two correct medical terms for the two different groups ME and CFS, people must start communicating clearly and scientifically correctly if they want to be listened to. Because when attempts are made to communicate with the likes of the press these names have often been used interchangeably which only confuses everyone. If people can step back and imagine what it must be like for someone from the press to receive a letter that goes along the lines of ME is recognized by the WHO, ME/CFS is blah, blah, we demand CFS to be called ME and then talks about CFIDS anyone from the press will be totally confused and as they have often heard about CFS being a psychiatric illness, they will rapidly come to the conclusion that this person doesn’t know what they are talking about or is a bit nuts and they will be ignored. The failure to use correct medical terms and to state that the two conditions are different, has caused the press and the majority of the public to be completely confused and to lose interest in the subject. We need to start using clear and correct language based on what the majority of experts in the field are saying I.E what the ICC says.

    We do not need and should not be encouraging the CDCs plans to rewrite the CFS definition, because it is a total waste of time and will only increase the confusion, they are only going to change it by adding ME symptoms and create another hybrid ME/CFS definition like the CCC which has just been rejected by its own authors. We need to be asking for what has always been needed for the CDC to stop ignoring the WHO and recognize ME as a separate disease, and for the ICC because it is supported by the most researchers into this disease to be accepted as the definition for it, until more research has been done on this group of people to write a better definition.

    It will be nightmare scenario if the CDC creates a new Hybrid ME/CFS definition, it will be used instead of the ICC and ME will continue to be ignored and if the patient community supports the CDC in doing this they will only have themselves to blame when a cure isn’t found for them and they continue to suffer.

    Effort at PR consensus have been totally derailed primary by efforts to keep the patient community united. But also because the only consensus that will be backed by the leadership of this site is the one that agrees with them, despite the fact that their views are totally at odds with the ICC and the majority of the researchers in this field. Many people have tried to change this situation and many have left in utter frustration at banging their heads against the brick wall, of PRs leadership’s refusal to acknowledge that ME and CFS are different conditions and refusal to stop using ME/CFS. PRs leadership does not know more about this subject then the writers of the ICC, and should admit its mistakes and immediately change its position, if its aim is to help stop human suffering.

    Medically the patient community is not united and people just have to accept this, the community consists of 10% ME patients and 90% CFS patients, research from a number of sources shows that the CFS group consists of people with a large number of known illnesses that their various doctors have failed to diagnose. The one thing that the patient community does have in common is that while CFS is being promoted as a real illness and given as a diagnosis to everyone, is that nobody has a correct diagnosis!

    However the patient community even though they are not medically united could and should be united in the aim of ending the suffering of all those involved.

    For this to happen, ME needs to have its WHO statues acknowledged and be recognized as a separate illness and ME patients separated from the group and researched separately.

    No changes need to be made to the CFS definitions, what needs to be changed is this http://www.cdc.gov/cfs/diagnosis/testing.html please everybody reading compare the CDC tests with those in the new IACFS/ME primer here http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf and the true cause of the problem will become immediately apparent, the CDC recommends that people are not tested anywhere near as well as they should be to rule out the large amount of other diseases that can cause these symptoms, Thereby ensuring that hundreds of thousands of people will be wrongly diagnosed as having CFS when doctors follow the CDC instructions! The IACFS/ME testing instructions are not complete and do not mention wrong reference ranges as outline by Dr Mirza in these articles http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    ME is a disease that has similar symptoms to many other diseases, but ME is a disease that isn’t any of the other ones, how on earth is anyone supposed to know who has ME if the other diseases are not tested for and ruled out??????

    If the CDC instead of wasting millions of dollars and a large amount of time coming up with another bogus CFS definition, simply hired some expert diagnosticians to write a complete step by step guide for testing that included all the tests for all the conditions, and it was made mandatory for all patients to have this testing before having a CFS diagnosis, It would help hundreds of thousands of people get their correct diagnosis and treatment, and the CFS group would soon be very empty! CFS would then be dropped as a diagnosis because the evidence from testing people properly would show it didn’t exist, you would be left with ME patients, and maybe some other disease that is not as yet known to medical science.

    If this approach is followed ME would be recognized as a real disease in the US the patients researched and cures found, and a lot of human suffering ended.

    If patients were properly tested then large numbers would get their correct diagnosis’s and treatments and a large amount of human suffering would be ended.

    What has been achieved by the old methods used by the patient community and organizations for the last 25 years of saying that ME and CFS is the same disease, using incorrect names for ME, and completely ignoring the issue of people not being correctly tested to rule out other diseases? Absolutely nothing, not a single human being has had their suffering ended by this approach, and ending human suffering is actually what this is all about!

    The majority of the patient community and groups need to change rapidly, they need to lose their egos and admit that they have had it wrong for a long time, and listen to what the real experts in the field are saying I.E the writers of the ICC and they need to campaign for the WHO recognized disease ME to be recognized for what it is, and the ICC to be used, and for new complete recommendations for testing people to rule out other diseases to be written as soon as possible and made mandatory for everyone. That’s all that the patient community needs to do!!!! Everything else is just a distraction and a waste of time and resources, all that needs to be achieved is the patients have all other diseases ruled out properly, the ones that are left then put in a group and given a name, e.g. ME, and respected as sick people, then studied intensively to find the causes and cures for their suffering, thats it.

    Hi Ember RE As far as I know, patients are never involved in developing case definitions.

    Patients have never been involved in writing definitions for any illness in the history of medicine, and nor should they be, for the simple reason that the patients are not medically or scientifically qualified to do this and it should be left to the experts to do. (by experts I mean the experts in ME not the CDC).

    All the best




  13. floydguy

    floydguy Senior Member

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    Case definition and experts:

    However MDs are not scientifically qualified and researchers are not medically qualified. From what I've seen some patients and some advocates have a better grasp than some researchers and some MDs. Leaving it up to the "experts" is a risky plan. From the perspective of many in power the CDC, Simon Wessley et al ARE the experts and look at where that has taken us.
  14. Ember

    Ember Senior Member

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    Aren't case definitions always created by experts? Are you saying that you don't approve of the ICC panel?
    rlc likes this.
  15. rlc

    rlc Senior Member

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    Hi Floydguy, when I say that definitions should be left to the experts, I mean experts like the ICC panel, who actually know that ME is a different disease to CFS, the CDC and Wessely school do not know this/ or won’t admit this, therefore are not experts, in fact they have not even been following correct scientific process and have continually ignored all evidence that they don't like. I sorry, I don't wish to offend anyone, but if any patients or advocates think that they know more than the ICC panel they are deluding themselves, the patients and advocates need to accept that the ICC panel has superior knowledge and everybody needs to follow their findings and advocate based on what the ICC say's i.e ME and CFS are totally different.


    So far this has not happened, in fact almost all of the CFS orgs have either ignored the ICC, or have misrepresented to the patient community what the ICC says to suite their own purposes. E.G. the CAA saying that the ICC recommends that the name CFS be changed to ME, or the coalition4me/cfs saying that the ICC supports their misguided efforts to change the ICD codes so that CFS has exactly the same code as ME.


    If patients and patient advocates continue to ignore the vast amount of knowledge, expertise and effort of the ICC panel, and continue to promote that CFS and ME are the same disease, then the most likely result will be that we can kiss goodbye to any chance of anyone getting cured in are life time!


    All the best
  16. alex3619

    alex3619 Senior Member

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    Hi rlc, we need to be careful to not confuse the politics of ME with the science of ME.

    Let me state very clearly three things before I start my analysis. First, I support the ICC. How could I do otherwise? Second, I support the IACFSME Primer as an interim measure till we have something better. Third I am anti-psychobabble, and am writing a book debunking it.

    On the political front, many recognized CFS/ME "experts" like Simon Wessely would just argue we are cherry picking our researchers to support our conclusion. He would argue that ME has been recognized as a psychiatric disorder since 1970 and that most doctors agree with him. Technically this is a correct statement, largely by virtue of it ignoring the bulk of the science. We cannot just say people like SW are not experts without also having strong grounds to say so - we sound like fringe lunatics otherwise. This is political. We have to be very careful in keeping politics and science separate.

    I intend to come back to politics later, because from a political perspective I agree with almost everything you are saying rlc, but not from a scientific perspective.

    Scientific Perspective

    Is ME a distinct disease entity? We don't know.

    Are ME and CFS different? First, which CFS? In any case, we don't know.

    Are all cases of CFS misdiagnosis? Some, maybe most (depending on diagnostic definitions), sure, but otherwise we don't know.

    I think we should move strongly toward using the ICC definition or an enhanced ICC definition for research. There is however one exception. It is possible, though expensive, to study biomarkers from a broader perspective. There are good reasons for doing this. Ideally we need a well funded vigorous study on CF, that is without the S bit, looking at symptom and biomarker clustering. Specific disease entities should, if we get the science right, emerge out of that. If one of these matches ME exactly we have validated ME as a diagnostic entity. If however several distinct clusters match ME then we know ME is a category of disease, just as cancer is a category. Similarly if many who qualify for a CFS diagnosis but not ME have the same biomarkers, then they are an ME subgroup. Those who are diagnosed with CFS but do not have the ME biomarkers are then clearly in separate disease entity groups. Furthermore definitions like the Oxford CFS definition might be resoundingly disproved.

    If a study is not looking at biomarkers in the above sense, then I think it should use ICC or a later enhanced version of ICC.

    The science of ME should not, however, be limited to just biomarkers, diagnosis, treatments or cures. We need all that of course. I will get into the politics of that in a bit, but the other scientific need is to debunk the poor science - particularly psychobabble. If we adopt ME as a diagnostic entity worldwide, then the CBT/GET proponents will just say it doesn't matter, its just another name for a dysfunctional belief disorder (I usually refer to this as the Dysfunctional Belief Model or DBM). These researchers grab huge chunks of research funds, compete for publication with much better science, and actively discredit competing theories. There are also detrimental political issues arising from this. Their position needs to be resoundingly debunked.

    Political Perspective

    Clearly differentiating between ME and CFS as a political move is a step in the right direction, but its not enough by itself. It is far too idealistic to say this will fix things. I think it wont do much at all by itself. It would win a single battle but not the war. About the only good thing to come out of it is we will get rid of the F word.

    Against this we have more political power as a larger group. Personally I think we should be pushing for neuro-immune diseases as a patient block, with an understanding that every disease entity within that needs its own research agenda and funding. As ME/CFS advocates, with a large patient base, we still do not have enough advocates to make a difference. ME advocates would have almost no power at all if we isolate ME patients from the wider group. I do agree however that we should get rid of the term ME/CFS except in describing old research. I have been saying "ME and CFS" for a long time now. This is not because I know for sure they are different, but because we don't know they are the same - we should not lose sight of that either.

    The psychogenic proponents will always move to say ME is psychiatric. They did this with neurasthenia, turning a neurological definition into a psychiatric one. They did this with ME, successfully, a point that is overlooked by too many ME advocates. They did it again with CFS and by reaffirming diagnostic entities like neurasthenia and hysteria. They will just do it yet again with a new definition of ME. We must keep in mind that while we promote the science of ME we also need to counter the DBM. The DBM is a brake on all ME research. I know of cases where good research papers were rejected by reviewers on the grounds that "CFS is psychiatric, this study has no value."

    Let me also point out that the adoption of DSM-V, which I think will probably go through without much change, will be a severe problem for us. You have a diagnosis of ME? No problem, but you also have a comorbid psychiatric disorder! The DSM-V says so. It will be widely viewed as over-riding claims like in ICC that ME is not psychogenic. We have a very big battle on our hands in the near future to show that the DSM-V is unfit for purpose with regard to neuro-immune disorders. Until we have both distinct validated biomarkers and a cure, a pure biomedical research agenda cannot counter this.

    Most doctors think CFS is psychiatric. Most doctors who know of ME think ME is psychiatric. In both cases they are simply unaware of the science. The psychogenic view has been using such effective pursuasive rhetoric that the science has been overlooked. Fighting for decent ME biomedical research funding cannot ignore this issue. Its also about political will and patient treatment. If most of the bureaucrats think ME is psychiatric, then making any changes will be extremely hard. Similary the adoption of a psychogenic model for ME and CFS by most doctors leads to widespread mistreatment of patients. Its a huge problem.

    Let me add that pushing for "consensus" views to be adopted risks playing right into the hands of the DBM and DSM-V proponents. After all, isn't the wider consensus that ME is psychiatric? We need to push the science, not consensus.

    I am writing a blog on this, but from a strategic perspective we need four things:

    1. Promote biomedical ME and CFS research. This obviously includes supporting the best definition, which for now appears to be the ICC.
    2. Debunk psychogenic ME and CFS research. Stop psychobabble!
    3. Support patients to receive proper medical care. This also means stopping medical abuse of patients.
    4. Support treatment availability for not just ME but all neuro-immune diseases. Nobody should be left behind. This means that treatment either has to be covered by insurance or subsidized. Its far too expensive to society to have millions of disabled people with ME or similar diseases.

    For long term gains, points 1 and 2 are the main ones. They are the accelerator and brake on progress. We need more pressure on the accelerator, and need to get the lead foot off the brake!

    Goal 4 has to be our ultimate goal.

    Downsides?

    Are there any downsides to moving to a position of ME as a distinct research entity? I don't think so. If ME turns out to be just a subgroup of a wider disease entity, we still haven't lost anything. By tightening the definition we may get faster research results for lower cost, which can then be used to examine a wider arrange of neuro-immune diseases to see if they are applicable. If ME is several diseases then we could be in trouble though - which is why I have no problems with biomarker discovery using clustering methods.

    Is there any downside to using ME as a distinct clinical diagnosis? Maybe. I do not think we can address the use of ME diagnostic critiria without also addressing the issues in diagnosing other neuro-immune diseases. Until we have definitive, validated and widely-accepted biomarker based diagnostic testing for ME then there are going to be problems.

    Another issue we have is with exclusion conditions. I suspect that exclusion conditions have frequently been used to wrongly rule out a diagnosis of ME. I suspect ME promotes a range of comorbid conditions, and is more likely if you already have one of these conditions. However, these conditions are often used to exclude a diagnosis of ME. This is because a diagnosis of exclusion is problematic. I am almost certain that many who have been excluded from a diagnosis of ME actually have ME. How many? I don't know. We do not want to miss a diagnosis of ME, from a clinical but not research perspective, because someone has depression or type 2 diabetes or sleep apnoea. There has been very little discussion of this issue, its largely been overlooked.

    For ME to be really useful as a clinical diagnostic entity we need diagnostic biomarkers. Only a biomedical research agenda can get these. We need to adopt ME as a research entity a lot more than we do as a clinical entity.
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  17. floydguy

    floydguy Senior Member

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    This is probably semantics at this point but you as patient (presumably?) have determined that the ICC is made up of the correct "experts". Patients who don't support the ICC are delusional? It seems a bit hypocritical.

    I like the ICC and generally agree with you but I think you have to be careful here. Perhaps the "experts" are the ones that must sit in a locked room and hammer something out but we as patients can have influence on who those experts are and hammer away (ie shine light and attention) on those who are psychobabblers and those who like the status quo.

    I think there needs to be a shakeout and/or an effort at distinct subsets. I also agree that many seem to want to keep ME & CFS as waste basket diagnoses which doesn't help anyone. Personally, I keep driving towards a more immunological dx. until this is worked out.
  18. floydguy

    floydguy Senior Member

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    No see above. I really have no idea how case definitions are created. I am saying we shouldn't just defer to whoever claims to be an expert. Most things are political. We should ensure that "our" experts are on the panel or for that matter any committee associated with ME or CFS. Because one has an MD or PhD after their names doesn't make them "experts".
    alex3619 likes this.
  19. Bob

    Bob

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    This demonstrates exactly why I suggested that it might be best if we don't concentrate our efforts on the name issue.
    It's such a complex and complicated issue, that there are always going to be misunderstandings and disagreements.

    In terms of the clinical use of definitions, there was no consensus in our discussions but, as I said earlier, the (only) consensus that we reached in our discussions was that the CCC and the ICC should be used for all research. At the very least, this would give us research results for alternatively defined patient cohorts, using more selective criteria. (Note that the consensus was that the 'CCC' does not specifically apply to 'ME', but that it would be helpful for 'CFS' research.)

    Is that something we can all agree on?
    If so, then maybe this is something that the CFSAC should 'recommend'?
    alex3619 likes this.
  20. Ember

    Ember Senior Member

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    You confuse me. Are these ICC experts not your experts?

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