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Diagnostic Criteria - can we resolve our community's differences?

Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 2, 2011.

  1. cigana

    cigana Senior Member

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    Thanks for summarising the difficulties at the beginning Mark.

    How about naming two types of ME? ME Type I satisfies CCC (say) and ME type II satisfies Fukuda (say). That way, when people come to do research, they can choose Type I with the knowloedge they're dealing with the sickest, but people with Type II don't get left out either because they have a "type" of ME. As you say time will probably tell in the end that we all have the same thing. Granted people will then argue over whether or not Type II is "real", but it allows research to actually be carried out.

    EDIT: I have just realised Jason et al. proposed the same thing with their "Research ME" and "Clinical ME" definitions...
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cigana,

    CCC should be adopted asap by everyone as THE definition. I think patients agreeing on Fukuda as a 'type II' would not be good for us at all because it would give it legitimacy, but mostly because it is not a 'type' as in type I and type II diabetes. Psychs will use this to say 'there are so many different types, it's just a wastebasket.' CCC is the most accurate definition we have for this discrete neuro-immune disease. Just go 100% with that. We may already have subtypes within CCC, actual subtypes, let's keep it simple and true.

    We demand what is true! Then let 'them' try to water it down and confuse it as that is 'their' job.
  3. Bob

    Bob

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    To Cig and Justin...
    I think there seems to be a good case for subgrouping, and a good case against it, but it all depends on what the subgroups are, and how it's done, who does it, why it's done, and what purpose it's done for.
    As Dolphin showed in her post, Leonard Jason is looking at subgrouping. And Jonathan Kerr was also looking at subgrouping, using genetic data.
  4. Bob

    Bob

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    What I'd really like to attempt to establish on this thread, is to work out if there is any common ground for our whole community, in terms of proposing changes to the official diagnostic criteria. As this thread shows, there are valid differences of opinion on the subject.

    I know that a lot of people think that the Canadian criteria is the only thing we should accept, but there are other patients who think that it would be unacceptable to introduce these criteria without further consideration to the patients who wouldn't meet them.

    What I'd like to do is for us all to look at the details and the nuances, of both the diagnostic criteria, and individual patients' experiences, and work out if there is any common ground for all of our community, work out what changes we could all agree on.

    This wouldn't stop anyone from having their own strong individual opinions on the subject, of course... But it would be nice to find some common ground for us all... To find some minimum requirements of the diagnostic criteria, that we could all agree on.
  5. ukxmrv

    ukxmrv Senior Member

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    I was diagnosed with ME (as per Ramsay) before CFS was invented. My problem with the Canadian criteria (and I also applaud how good they are) is the Post exertional description. Remember that one Rheumatologist said that this was too close to his FM patients and that pain from deconditioning could be confused with ME type post exertional pain.

    Also would like to see a category for epidemic ME. That's me. I was happy with the Ramsay description of ME and that is still the closest /best dx for me. I've also heard long term ME patients say that they would not be covered by the Canadian but can't remember which part.

    Does the Canadian need more specific exclusions are well? After the "news" that Emily Ranzten could possibly have ceoliacs disease I went to the complete Canadian Guidelines and couldn't find that as an exclusion.

    I suspect that we need more testing between all the different groups to reach a concenus. On one gene expression paper there was a different reported between acute onset and non-acute CFS pateints. Can't remember the criteria used. We need testing between the "old ME", different CFS criterias and the Canadian to verify. This could change over time of course, as new things are found.

    XMRV+
  6. Angela Kennedy

    Angela Kennedy *****

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    Where can Ramsay's definition be accesssed?
  7. Mark

    Mark Acting CEO

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    Sorry Justin, but if you've read my first post in this thread you'll know that I've already gone through the reasons why this approach simply won't do. It isn't good enough, and it will never happen because it cannot happen.

    If you are going to take a diagnosis that has been assigned to several million people, and redefine that definition (OK, restore the original definition) such that only a minority of those several million people will retain the diagnosis of ME/CFS, then you HAVE to say something about what diagnosis or categorisation you are proposing for the majority of people who have that diagnosis now and who have no alternative. And before you get started, what you say should not just be to adopt the language of your oppressor and apply the psych lobby theory to everybody else and claim they are all 'just suffering from depression'. Some people do that a lot...and it makes them no better than the psychs...

    The motivation here is that we all agree on the importance of the CCC criteria as a core definition of the disease. I think there is also a consensus that nearly all research should use the CCC. But for a clinical definition, you just can't take away the diagnosis from hundreds of thousands of people without any plan or suggestion for what to do with those people.

    Somebody posted on another thread today that they "hate everybody who thinks they have this but don't". This comment is an obscenity - but I'm grateful for it because it's the most explicit statement I've ever read expressing the attitude that some campaigners for the CCC express frequently, to the great distress of many. IMO this is one of the biggest issues, if not the single biggest problem, that we have to overcome as a community. Somehow, the patients with an attitude like this need to be helped to grow up.

    Whether they actively abuse such patients, whether they just hate them, whether they blame them for all their own suffering, or whether they simply say "I don't care about them, they are not my problem", campaigners for CCC ME need to take a good look at themselves and ask themselves what is their attitude and what is their proposal for everybody else in the wastebasket, if they want to campaign for sole ownership of the rights to ME. If they expect to take over the wastebasket and kick out everybody else with a different definition, and to do this as a minority, than they shouldn't be surprised by the perpetual failure of this strategy.

    The backplot is well-known to all of us. The definition of ME was progressively broadened during the last 30 years or so, watering down the definition and including more and more people with vaguer and vaguer symptomology, frequently characterised as "patients who just have psychogenic depression". And so we all end up lumped together in what's accurately described as a wastebasket, in a situation where no research can ever make progress because the patient group is too heterogeneous for any findings to ever stick.

    Fine: we all know that, and we're all angry about it, and frustrated by how we're trapped by it. People are being diagnosed with ME/CFS even though it's very unlikely in many cases that they have the same illness as those with ME. We all get that.

    But to hate those people who don't have ME but get dumped into the same wastebasket? To hate those patients for that? Words fail me to describe that attitude. Hate Wessely if you must hate, or hate psychologists in general, or hate the medical establishment, or the government, or the CDC...if you must express yourself in terms of hate, then direct it at the people who are responsible for defining and handing out diagnoses. But to hate the other patients who have this diagnosis, for being lumped in with you?

    If we're not careful, it seems we are just being asked to campaign for the construction of a brand-new wastebasket for "people who fall short of the CCC" - a wastebasket for which we are asked to argue that there should be no research funding, because we who fit the CCC should have all of it. That wastebasket will indisputably contain people very much like all of us - people with a chronic and deibilitating illness that's destroying their lives, with no research and no support from society, who have an unknown physical cause for their illness, and whose symptoms resemble our own symptom pattern so closely that we have been defined together. And we are asked to abandon all those people. We are asked to care so little about their plight, that indeed we should even focus our hatred on those patients themselves - for being sick with something similar to ME, and for being diagnosed with it. As if those patients don't have enough hostility directed towards them already.

    You cannot ignore, disregard and throw away all the people who have been lumped into the wastebasket together with those who have "true, CCC-style ME". To do so is just some kind of bizarre Stockholm Syndrome behaviour, adopting the language and attitude of the psych lobby oppression and applying it to everyone else who has the condition except for yourself and those who have whatever-you-have. Or perhaps it's like having a bad day at work and coming home and kicking the dog?

    It will never fly, this campaign to adopt the CCC, unless it takes into account the broader range of patients and speaks to their reality too. There are millions of us with unexplained medical diseases, and there may just be one disease, or many of them - in the absence of decent research we just don't know. But it's a devastating experience for all of us, and blaming other patients for the whole situation because their particular disease isn't (in your opinion) true Ramsey-defined ME, or attempting to wash your hands of them and say "well they're not my problem, they have something different" - that's an awful and totally counterproductive approach.

    This thread is about trying to actually achieve a consensus regarding CCC ME that is rational and achievable, something we can all support, something we can campaign for together. If the most entrenched and vociferous campaigners for CCC-defined ME can be made to understand that there are other people outside that definition who have severe and disabling physical illnesses that can't just be thrown overboard, then we might be able to start making some real progress together. But while the argument is stuck as it is at present, with a minority of campaigners entrenched in a dogmatic position that takes no account of the concerns of the majority, and frankly admits to not caring about them or even admits to hating them, then I could not be more clear: none of us will ever get anywhere like that.
  8. paclabman

    paclabman

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    Since no one has brought this up, I guess I'll state the obvious. I'd imagine that the various facets of the insurance/ health care industry would love to see the tightest, most restrictive definition possible. If such criteria were ever sanctioned in any way by any "official" org (talking US here), they would be very slow to ever change the definition, regardless of what is learned in the future.

    A good example is Lyme. The CDC criteria is outdated and was never even intended to be a diagnostic criteria (CDC even says so). There are better definitions for Lyme available using Lyme-specific bands on the Western Blot. There is now a massive organizational inertia with the CDC tracking defintion and it gets compounded by parts the med. community that can make good money consulting for ins. companies. The CDC criteria is very restrictive and excludes many people who actually have Lyme. So, the ins. industry loves the CDC definition and uses it to help deny medical care and diability to many people who need those services.

    While a narrow description sounds good (and is for research purposes), do we really know enough that we want to be really restrictive for a diagnostic criteria? It could take on a life of its own and once the monster is loose, it may be impossible to ever get it back under control.

    I sure understand the PEM issues. By trying to determine the cause and not giving up on it, it lead me on a journey that found two infections ( and now maybe XMRV?) and finally found a way to quantify it with the U of P Stevens Protocol. At this point, and considering my age, I suspect that the damage has been done and I'm not sure it can ever be reversed. It is a big help tho to understand my limits and have an alternative to at least improve in baby steps (anaerobic exercises).
  9. Mark

    Mark Acting CEO

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    All thought-provoking points, ukxmrv - I'm pleased to see you on this thread, your contribution to this discussion could be invaluable.

    You last paragraph suggests to me something useful we could do: gather together all the evidence regarding subgroups, such as it is, and try to tease out some of the key distinctions. I haven't seen the gene expression paper you mentioned, so I'd love a citation for that.

    I find myself back at the single major theme that I would have expressed as the top priority before I arrived at Phoenix Rising: the need for mass data collection and cluster analysis of the family of neuro-immune diseases, in order to identify the subgroups. Before I became embroiled in learning about the science, the history, and the politics, I would have simply said that this is the essential first step in beginning to untangle the mess. This seemed totally obvious to me, and it still does.

    If we're lumped together in a wastebasket, then the first step to understanding our illness is to sift through that wastebasket and start grouping like with like. The concept of "Subgroups" is sometimes mocked, when it comes from Cort or from the CAA...but bizarrely, this is done by people who also believe that they belong in a completely different and well-defined subgroup from everybody else, and who then seem to insist that there is no such thing as "subgroups", there is just ME and everybody else. So it boils down to an ostrich-like attitude of trying to pretend that everybody else doesn't exist, in the hopes that they will just all go away...

    I think if I were sitting down with a blank sheet of paper, and defining my own campaigning strategy, what I would be saying is: get a big research project together, collect masses of data about the patients in this wastebasket, and then do cluster analysis to scientifically identify the subgroups. I'm starting to think once again that maybe that really is the only correct approach to take, scientifically. Perhaps I should be campaigning right now for that to be done...but as it's turned out, it seems to be very difficult to persuade researchers to do science, so I've ended up doing it myself - it's my hope that Phoenix Rising's patient data repository, which will be launched later this year, has the potential to solve this problem definitively...
  10. Mark

    Mark Acting CEO

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    A really good point there paclabman, that hasn't been mentioned in this discussion so far. Using the CCC as the only diagnostic criteria would indeed carry the risk you describe: it would be used to deny recognition and support to anybody who doesn't fit it. I hadn't thought of that, so thanks very much for mentioning that point.

    I think the adoption of the CCC for research criteria is uncontroversial. I haven't heard an argument against that yet - it's in everybody's interests. But when it comes to diagnostic criteria, it's a whole other story...
  11. Angela Kennedy

    Angela Kennedy *****

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    To be honest, this talk of adopting CC and arguments about being too restrictive is slightly missing an important point.

    What is needed as a matter of urgency is an establishment of Canadian defined cohorts of patients for research, and validation on more patient cohorts (both of these are needed in the UK and rest of Europe, for example).

    This is a part of a scientific process, and should be a priority for say, British research funding charities.

    Whether I or anyone else think it's better than this or that, or whether people with no organic abnormalities (Oxford cohorts, the evidence shows that I think) feel left out, or whether symptoms change from year to year are not really the issues.

    It's whether the scientists are going to pull their finger out and do some research to establish neurological ME/CFS patients apart from 'chronic fatigue with no organic dysfunction' to actually study. Jason has already done work on this - but it needs to be taken up and run with.

    REcognition that CC patients are different, somehow then Oxford CF and Fukuda 3-4 symptoms, and looking into this more would be a good start. But currently we can't even get that recognition from the various powers deciding health policy and 'science' direction with regard to ME/CFS.
  12. Mark

    Mark Acting CEO

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    Thanks Angela, I like that analysis. It's research that can really deliver the benefits - and that needs to be research on the CCC.

    I think that part of the consensus is fairly well-established: I think we can all agree on the importance for the use of CCC cohorts for research, and perhaps we can unite behind that as the primary strategic goal?

    Are you suggesting then that this is the way forward on this whole question? To focus campaigning on the research criteria, and put the question of diagnostic criteria to one side for the moment?

    Would others be in agreement with this approach?
  13. ukxmrv

    ukxmrv Senior Member

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    Angela, you asked about Ramsay's definition. That was actually through meeting him in the 80's. I was not diagnosed by him but was lucky enough to hear him speak and to talk to him. He was one of the experts who taught my doctor about ME dx's. There are a lot of old ME people still alive and still with ME.
  14. Angela Kennedy

    Angela Kennedy *****

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    Hi ukxmrv

    Ok, so that's a problem as far as defining 'ME' for study purposes, then?
  15. Bob

    Bob

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    I agree with you Angela... about CCC being needed for research... and I'm pretty sure that everyone on this thread has so far agreed that the Canadian consensus criteria (CCC) should be encouraged/demanded for research purposes, but not everyone is happy for the CCC being used for clinical purposes...

    If we all agree that the CCC should be made official, at least for research purposes, and allowed to be officially used for research purposes, then it's something we can campaign for knowing that the whole community is united.
  16. ukxmrv

    ukxmrv Senior Member

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    It is Angela, could still be done though. There are still some old doctors and patients left alive. It could be done from his books and writings.

    It doesn't change our dx though or that it was/is the most appropriate dx for us.

    A research group for a study could be put togther from old ME patients easily, then the populations compared if needed. We have Royal Free ME patients for example.
  17. Angela Kennedy

    Angela Kennedy *****

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    hi Mark,

    Well I would not want to 'sidestep' clinical use of diagnostic criteria. But if I had a 'wish list' I could fulfill, it would be to first get work done on establishing research cohorts and clinical validation studies of CC in the UK. I am concerned that key UK charities haven't worked on this as a priority (if anything should be 'seedcorn', for example, it's this).

    My concern has been reinforced by the negative XMRV study by Erlwein et al (inc. McClure and Wessely) and how Cleare and Wessely later described their cohort (it really showed how they ignore, in their RESEARCH, patients who fulfil ME or ME/CFS criteria); the Vercoulen et al study which did the same; yet how they both claimed their cohorts as 'well-characterised' geographical exemplars of ME/CFS; and the Sandthouse et al comment in the BMJ about how 'rare' patients like Lynn Gilderdale are.

    If there was a way to get this sort of work off the ground I personally would be delighted.
  18. Angela Kennedy

    Angela Kennedy *****

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    i think the issue here is whether current researchers would find more 'historical' criteria useful for further study. The validation already done on the CC is a strength that Ramsay doesn't have?

    But 'old' ME patients should be part of the studies, yes. I wouldn't say exclusively though.

    Now apparently Ellen Goudsmit has co-authored new criteria published by the BPS (but not accessible). It would be interesting to see them- and I wish she'd make that article accessible.
  19. ukxmrv

    ukxmrv Senior Member

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    Bob started this thread asking about diagnostic criteria and concensus. That's what I have been thinking about. Unless we compare a group using some test/standard etc at some point we won't know how the populations compare. No one works on "old ME" but it doesn't mean we have all gone away. At some point it would be good to know if the result of a research project can be applied to that group of course. However, it's not likely to happen.
  20. Angela Kennedy

    Angela Kennedy *****

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    Why not though?

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