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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. Bob

    Bob

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    I've been having a think, and I think that, right now, the most important thing our entire community needs to be pushing for is for a separation of ME from other fatiguing illnesses. I think that all of our patient organisations need to come together to organise a big, single, concerted campaign to fight for the Canadian definitions, or better, to be used, so that ME can be treated as a single, distinct, disease in its own right. I think this would immediately make so much difference to our lives, especially in terms of stigma, and understanding of the disease.

    I don't understand why all the separate ME charities and patient organisations haven't come together to do this already. They've had 30 years or so to get organised!

    Do many of you share these thoughts at all?
  2. Mark

    Mark Acting CEO

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    Hi Bob. I think you're right in that that's probably the biggest single issue that needs to be resolved and the one that is at the centre of so much friction, and yet often unnecessarily so, being largely fuelled by semantics, with CFS having been the dominant term in the US so that it takes time to even get to where you're speaking the same language - or understand each others' language, when the term CFS is used.

    I think there are some genuine difficulties here though, that I hope this forum could help to resolve. Several times in arguments over related issues I've felt we came ever so close to resolving the political battles here, but never quite got there - but if we could achieve that common understanding we could begin at last to speak with a united voice I think.

    So I'm going to stick my neck out and try to suggest some of the problems needing to be overcome.

    If I can sum up the core of the problem as I see it: it's that there are a hell of a lot of people who either fall just short of the CCC, or who aren't sure whether they would manage to get a diagnosis under the CCC, or who used to fit the CCC once but are now in partial remission but still with serious problems...and those people are still very ill, permanently sick for life, with an illness that doesn't fit anywhere, that has no other name, no other category, and which resembles ME more than it resembles anything else.

    So the question becomes: where exactly do you draw the line (I love the CCC but does it really draw an exact line?!), and what on earth do you expect to happen to those people who happen to fall short of that line? All too often the most vocal line I hear seems to be saying: Well I don't care about them, I am well inside the CCC, and stuck there, and everybody else probably belongs with the psychs - those are the people who just have depression and need CBT - but anyway what becomes of them isn't my problem.

    But it is their problem, like it or not. That attitude will never solve the problem we all face, because to somebody who fits - say - Fukuda and then some, but not CCC, from their point of view there is no difference between Wessely and the psych lobby and the hardcore "true ME" campaigners. Both those same groups of people seem to be saying - each in their own veiled way: I don't believe in your supposed illness, I think you're just depressed and you need psychotherapy. Talk about being caught between the devil and the deep blue sea!

    For myself: I have been sick 15 years, I have permanent immune vulnerabilities that I acquired in my mid-twenties, I went through several years where I could hardly move without pain, I still have a permanent head cold, severely restricted diet or I get IBS, effectively housebound or I get my MCS and mold sensititivities triggered, I discovered from this forum that 'Orthostatic Intolerance' means difficulty when standing still so I learned that I do have that too after all, I get enormously fatigued whenever I try to get active and sleep has never been refreshing for 15 years, I used to sleep 14+ hours a day...but nowadays I avoid anything that makes me ill, including physical activity, and I can work part-time and basically keep myself on a fairly even keel so long as I accept that I can't go beyond a threshold of about 50% of normal activity. I've suffered from memory and concentration problems when really ill, and I suspect that some aspects of my cognitive processing are subtly but permanently impaired, but I don't think even then I would class that together with the really severe neurological problems some people get, and persistent infections and severe flus have never really been a feature for me. I haven't mentioned the itching, or the chronic neck and back pain and burning sensations in muscles...but those things come and go and there's a whole load of stuff I haven't listed too I'm sure.

    But...do I really fit the CCC? Probably not, right now. Perhaps that's Dr Myhill's fault! :) Maybe if the CCC was more tightly defined clinically, it would show up that I do, actually, fit the pattern, if I failed an exercise challenge for example, but...I just don't know if I fit that definition any more, and I'm not even sure that I ever quite did. I do know for sure that there are a lot of people who seem to be much, much sicker than me (though it's hard to judge based on how people describe things because that does vary), but they do seem to have a very similar pattern of symptoms, so I honestly don't know whether we belong in the same category or not. I have a diagnosis of MCS from a doctor who believes in it, and a 'diagnosis' of 'ideopathic immune disorder' from my GP, and that's it.

    What I do know for damn sure is that my permanent immune vulnerability isn't related to my mental state, or suppressed childhood trauma, or my reaction to stress, or maladaptive coping mechanisms, or false illness beliefs, or any of that horseshit. And whatever it is that's happened to me, it has ripped the guts out of my life and left me with no explanation, no support, and before the WPI came along, no glimmer of hope for the future whatsoever.

    So: the problem for me is this: what are you saying to people in my situation? What becomes of those who have ME/CFS but who don't fit the Canadian criteria? When you draw that line with the CCC, are you defining it with a realisation that it becomes then a diagnosis of exclusion in itself - excluding anyone who doesn't fit the definition and abandoning them to a new kind of limbo that is for sure going to leave them at the mercy of the psych lobby?

    Don't get me wrong: I am emphatic that in research terms, study should be almost wholly if not entirely directed towards the sickest of the sick, and to people who have well-defined CCC. If you want to get decent, consistent, meaningful results, and understand the epicentre, the core of the disease, then that's a no-brainer. That has to be in everybody's interest - but if you did that, and got your scientific breakthrough (assuming of course we don't already have it with XMRV) then I would pretty much be prepared to bet the farm that the real condition you identified in terms of the pathology would turn out to include a hell of a lot of people with 'Fukuda but not CCC'.

    I think this must all seem like a really simple question to anybody who falls well within the CCC, but the fact is that it isn't, because of the reasons I've given above. I really want to say to anybody of that point of view: if the line is going to be drawn at the CCC, if you want to achieve that separation, then firstly you need some damn good evidence that sharply distinguishes that condition from anything that falls just short of it, and secondly you need some kind of a decent plan for what is to become of everybody on the other side of that line.

    I honestly think it's as simple as that, though I stand ready to be corrected as always. If ME/CFS is where I seem to fit, if I have a chronic immune condition with no name that's completely unrecognised but which sounds to me a hell of a lot like ME (well, in my case, a little more like the definitions I've read of gulf war illness perhaps)...if I had that Fukuda diagnosis, instead of 'MCS'...well anyway, what are you saying to me? There are an awful lot of me, apparently - from the best estimates I've seen it appears there are between four and ten times as many people with 'CFS' but not CCC than there are of the CCC people, so...well, if your plan is basically to try to throw us to the wolves then don't be surprised if that meets with some opposition...

    I just think that this is the issue that the ME campaign world needs to somehow get to grips with. As I say, I can totally understand why you would say: we should never have been lumped together, we shouldn't have to care about you, we have worse problems than you, and we don't care and we even agree with the psychs that a lot of you are probably just depressed. But I want to illustrate here, again, that from my POV then if that's the message you're putting to me, then you might as well be Wessely himself for all the difference it makes to me: you seem to be saying the same thing to me that he's saying.

    I don't know whether I'm putting this across very well and I've been going on for a while so I'd better wind it up, but the last issue I want to bring in on this theme is the WPI findings.

    So what of the WPI findings of XMRV? When we did our first polls of XMRV positives/negatives here, when the first test became available, what was extraordinary about those was that there was no correlation whatsoever with positivity and severity of symptoms. 'Moderate' and 'Severe' were positive or negative in equal measure. Furthermore, we then get the news that 100% of Lyme and mold sensitive people (that's me for sure) also tested positive for XMRV. And 4-20% of the general population have it. And loads of other illnesses have it too. And finally note that it replicates in the presence of cortisol (related to stress).

    What's been remarkable to me is that all of those WPI findings seem to run contrary to the dogmas of many of the most vociferous campaigners...and yet they haven't taken those findings on board at all, it seems. So: stress is still irrelevant, and there's a clear difference between CCC ME and everybody else who is just depressed...even now that we have the WPI finding that all of us have XMRV in common, and even though the WPI have clearly implied that they think that nearly everybody with CFS has XMRV, and so do loads of other people.

    It seems to me that the WPI's science, the models we have of XMRV, paint a pretty clear picture and it is not one that suggests that any lines can actually be drawn down the middle of the ME/CFS world. The picture looks to me like this: XMRV together with co-infections defines a huge range of ideopathic illnesses, and what your symptomology looks like is mainly defined by your specific history of co-infections and perhaps also by your genetics.

    So I would currently guess this: I have XMRV with mold/fungus co-infection, and maybe a minor head cold and some gut bacteria as co-infections; all of those are now chronic conditions and XMRV is maintaining their chronic infectious state. People with 'classic ME', with clear sudden flu-like onset, have EBV, and/or HHV, maybe specific strains of those, as chronic co-infections with XMRV. People with chronic Lyme got bitten by a tick and because they had XMRV they never recovered from Lyme. And so on and so on...

    That's my model, which looks like what the emerging science is suggesting, and moreover that's basically similar to how I would have seen the whole spread of neuroimmune diseases anyway - all united by some common factor and further defined by an individual 'fingerprint - and so it seems to me that if all that is correct, that leaves the old political landscape very much changed...for the better...

    I would like to hope, then, that we can all get behind the CCC (perhaps developed further, with clinical tests included) for research purposes. I have always believed that it's logical to study people whose condition is well-defined and obviously serious, and who clearly have the same illness. I've always believed that it makes sense to study the sickest people first - you are surely more likely to get the best understanding that way. So: that, I hope, we can unite behind. We can all also all agree that we need massively more research into biomedical factors in neuro-immune diseases and an end to the psychologising of our suffering. Themes like those seem to me a clear basis for consensus.

    But stating that CCC ME must be defined as a separate condition from 'CFS', without a non-psychosomatic model for the future of those chronically ill with 'CFS' but not CCC...well, I don't see what's in it for somebody who doesn't fit the CCC. And like it or not, my hunch is that without that plan for everybody else, and a sense of solidarity between those on either side of the line, it just ain't gonna happen...

    I'm trying to take things forward here, rather than round and round in circles, so I hope I haven't caused any offence in the above...it's an attempt to identify and clear a roadblock in our community..but this is just the way I see things, so: am I making any sense here at all?...
  3. Dolphin

    Dolphin Senior Member

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    I'm going to rude and not read Mark's post before posting (it's late here) and point out that the Jason et al (2010) paper:
    has different levels.

  4. Enid

    Enid Senior Member

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    Only the Canadian Consensus paints the whole picture (and don't I know it over 11 years)
  5. WillowJ

    WillowJ Senior Member

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    Mark, I don't see the CCC as ME/CFS position as throwing non-CCC CFS to the wolves. The other people with whatever disease (however similar or dissimilar to ME/CFS; it's somewhat unclear without biomarkers) have REAL DISEASE, too. Nobody, ever, should be stuck with CBT/GET and "it's in your head" "it's maladaptive coping" and all that, which is PURE BOLOGNA as applies to just about everyone. CBT/GET doesn't even work very well for most depression patients. MDD is a biomedical disease with mitochondrial dysfunction.

    I advocate CCC for research purposes, as temporary until we get a combination biomarker and clinical presentation with PEM diagnosis. Fukuda with PEM required, for clinical purposes, is fine with me. My understanding is that Klimas' NK profile fits most Fukuda patients.

    I would prefer to keep all the Fukuda-CFS with PEM together even if we end up with subgroups ME-I, ME-II, ME-III, etc., if for no other reason, simply because we've all been through hell together. However I think we do and will find scientific support for that, as well.

    But we have to get rid of the CFS nomenclature, we have to make PEM and some combination of immunological and neurological manifestations mandatory, and we never ever want to hear the F word (fatigue) ever again.

    And for people with fatigue but no immune problems, we need to watch out for them, too, if we at all can. They're also being ignored and patronized. They probably have easier problems to treat (vitamin D deficiency, thyroid problems, etc.) but they are also being left unassessed and untreated and that is also a human rights abuse.
  6. WillowJ

    WillowJ Senior Member

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    It's true that the doctors are behaving badly. They should have learned from epilepsy, multiple sclerosis, autism, etc. that just because they cannot readily understand a disease does not mean the patient is irrational and stupid and not deserving of thorough, compassionate medical care and a careful dedicated search for answers.

    However, we do have evidence that the Disease is neurological, which is why WHO classed it there in the first place. We also have evidence that it's immunological. And vascular. Having multiple classifications available, I would lean towards leaving it in neurological because it more closely matches Myasthenia Gravis, mitochondrial disease, and migraines with aura, which are treated in neurology (albeit the migraines not very intelligently, as this is also a "women's" disease and they know next to nothing about the pathology of aura), than SLE, which is treated in rheumatology. And I still say it's an encephalitis.

    However, neurologists are not generally known to be nice doctors to work with; they tend to have big heads. All the same, a rheum doesn't know what to do with you unless you have traditional inflammation (not the sort we might have) or kidney failure, or more gross connective tissue problems. Maybe they could learn? I've never worked with an immunologist, so I don't know if that would be a useful place to put us, but I don't know that they would know what to do about our neurological stuff.

    Vague symptoms are used for 1) stuff that has not yet been investigated for which the patient requires further testing to get an accurate diagnosis and 2) stuff that is thought to be psychosomatic. When they put a final diagnosis there, it's a signal that it's psychosomatic.

    So the USA's CM, as regards CFS, is NOT legal, because it classifies CFS in two places, so it does NOT conform to WHO conventions. Excellent thing to note in an advocacy letter. Thanks, Eric.
  7. Bob

    Bob

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    This is a very important subject for me, so I wanted to respond to Mark concerns, to see if there is any way our whole community can reach some sort of consensus on this subject.

    First of all, I agree that ME, as defined by WHO, is neurological and immunological, and that it needs its own unique diagnostic criteria, in order for there to be any progress in terms of research. But I also totally agree with Marks very valid concerns, and so I think it would be good if we could reconcile both the issues.

    So i'm going to put forwards some thoughts, and I invite feedback, discussion, criticism, thoughts etc. If some of my opinions are controversial, then please could we have an intelligent discussion about why that is so?

    As a first step to changing the diagnostic criteria, I don't think that the establishment is going to employ expensive, and unestablished, complex tests for biomarkers which the ME experts employ. This is sad, and regrettable, but in reality, this is not going to happen as a first step, so i think we need to be less ambitious than that to begin with.

    My own experience of ME is that the illness is a fluctuating condition, which is sometimes severe, and sometimes allows for a certain amount of activity, and alongside this, there are sometimes weird and not so wonderful complications and associated symptoms. This experience fits in exactly with all the people I know locally, who have all had almost identical experiences as I have, since we've become ill. There are also some patients locally who are permanently bed bound, who obviously who don't meet others so often.

    My personal opinion is that ME has all levels of symptoms, from no symptoms at all (i.e. remission or xmrv carriers), to severe bed-bound levels of illness, and that all the unusual and neurological and immunological symptoms can flare up or diminish at any time, in some patients. And I recognise that many patients do not ever experience any remission, and are in a permanent state of having severe symptoms.

    At a round table discussion, at the 2010 Invest in ME conference, Mikovits, Whittemore, Klimas and Jason confirmed that the experience they have with many of their patients was that their symptoms had changed over time, esp after employing symptom management techniques (such as pacing, and whatever other medical tools they used to get better). The four speakers at the round table discussion seemed to be under agreement that their patients' symptoms changed over time, and that they expressed quite different symptoms, and levels of symptoms over the course of their illness. They said that some of their patients would not necessarity fit the Canadian consensus criteria (CCC) now, whereas they would have done when they were first ill. So, to deal with this, they said that when using the Canadian consensus criteria (CCC) to make a diagnosis, that the patients' symptoms should be evaluated over the entire course of the illness, and not purely a snapshot of their symptoms at the present time, as this could result in the patient not receiving a diagnosis using the CCC.
    (I'm pretty certain that I have captured the jist of this conversation correctly, and not misrepresented the proceedings.)

    So, like Mark, I am concerned that the using the CCC for a clinical diagnosis will miss people who have ME, who will then be left with an unfounded psychological diagnosis, and basically thrown to the wolves.

    (Also, at the moment, many patients only have a diagnosis of 'CFS' (i.e. their illness has been labelled 'CFS' by their doctors) and some are told that they don't have 'ME'. Most doctors are prejudiced against calling it 'ME', and many of the 'CFS' patients assume that they don't have ME and that they would be totally neglected if the diagnostic criteria were changed in order to separate CFS from classic ME, as defined by WHO. I believe that we need to reassure and include these patients in the program, if we press for change. Some doctors even tell their patients that ME isn't a real illness.)


    I think there maybe a few possible solutions to these issues...

    1. The first is to evaluate the patient's symptoms over the entire course of the illness, from the very beginning to the present time, and to use all of this information in an evaluation when using the canadian consensus criteria (CCC).
    Mikovits, Whittemore, Klimas and Jason promoted this approach when they had their very interesting round table discussion at the 2010 Invest in ME conference, as they said that many of their patients would not fit the CCC after managing their illness and seeing their symptoms improve.

    2. The second solution would be to use the CCC only for research purposes, and not in a clinical setting. This would satisfy me personally, to a great extent, especially as a first step towards improving our lives. It would mean that ME researchers would then be able to carry out meaningful research on a homogeneous group of patients. It would mean that Jonathan Kerr in the UK, for example, would not have been turned down for research grants because he insisted on selecting his patients with criteria which were tighter than the official criteria. So, if he was allowed to use the CCC, then he could have carried out meaningful research on a well defined cohort of ME patients.
    And I'm not so certain that using the CCC in a clinical setting would be very useful to us anyway, esp here in the UK, because doctors are still just going to look blankly at us and say that there's nothing they can do for us, as there is no treatment.

    3. The third solution would be to have different levels/grades of ME, as Leonard Jason suggests; Grading ME, depending on the current severity, and types, of symptoms that a patient is expressing. This way, every patient would keep the ME label, but researchers would be able to work with homogeneous groups of patients whether it was a severe group or a mild group. This would be the researchers choice which group they worked with. This would only work if it was absolutely clear which patient type each researcher was working with, as only then would their research would be replicable. I believe that this would definitely be a big improvement on where we are now. (Although, if psych researchers started to try to confuse the government and the public by conflating the results of different patient types, then this would not be an improvement. But we would be able to reject their lack of scientific rigour more easily than we do now.)

    4. The fourth, is that if we all agree that ME has to have post exertional malaise (PEM) as a symptom, then this should, at the very least, have to be included in any new diagnostic criteria used to diagnose ME. I think that PEM is a non-negotiable for diagnosing ME, and in some ways, if all that happened, was that PEM was added to the current criteria as a prerequisite for a diagnosis, then that would go a long way to separating ME patients from other fatiguing illnesses.


    Any thoughts on all of these points and suggestions? Which would you accept, and reject, as a way forwards for our community, and why?
  8. oceanblue

    oceanblue Senior Member

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    Thanks to Bob and Mark for those extensive posts, which really got me thinking.

    I fully agree with the first point as I think it's key both to effective research and to how patients are diagnosed and treated. As for the definition we push for, it might be the 'or better' option, I think, for many reasons, including those made by Mark, Bob and WillowJ - though I agree that the CCC are the right place to start that discussion.

    As Mark says, patients who don't quite meet the CCC are likely to feel cast out from the ME tribe yet certainly don't feel they they have some general chronic fatigue that the biopsychosocialists love to prey upon
    I completely agree that if we can all unite around a common view of the illness we are far more likely to make a difference.

    Bob's point that people like Nancy Klimas, Judy Mikovits and Lenny Jason recognise that some of their patients would no longer fit the CCC, to me highlight one of the weaknesses of the criteria as they currently stand.
    As these participants and Bob suggest, we could broaden the definition of CCC to evaluate patients over the course of the illness. Or do as Lenny Jason does (pointed out by Dolphin) by having several levels of CCC criteria. It's certainly possible, but my concern about this approach is that it takes a complex definition, and when it doesn't quite give the right answers, adds yet more complexity until it does.

    There's an Albert Einstein quote that I think very relevant:
    The Oxford Criteria to me fail the second part of this test: by focusing just on mental and physical fatigue they too broad to be useful, sweeping up a whole mish-mash of patients many of whom have primarily psychological problems with fatigue as a secondary factor.

    On the other hand, I seriously wonder if the enormously complex Canadian Criteria meet the 'as simple as possible' test (which is much the same as Occam's Razor). Have you read the CCC document? It lists so many requirements that in lots of different places I couldn't help wondering - are we sure this is the exact place to draw the line between ME and not-ME?

    As Mark put it:
    It turns out that is a key principle in defining diseases in general (bonus points to Mark :D) - if the people who meet the cirteria look very much like those that just fail to meet them, then you probably haven't defined a discrete illness.

    Digression to main thread topic There's a really interesting paper about the validity of psychological diagnoses which concludes that most psychological illnesses are not valid disease entities ie that the current DSM-IV is full of diseases that aren't really valid specific diseases at all! Never mind DSM-V proposals... Maybe that's why psychologists are so comfortable with definitions of CFS that don't tie down a discrete illness?

    The key point that the paper makes (it's not just talking about psychological disease) that I think is relevant to ME is:
    My concern is that there might not be a natural boundary between those that meet the CCC and those that just miss out.

    What would help here is empirical evidence (no relation to the dodgy CDC 'empirical criteria') to find where, if anywhere, the natural boundaries exist ie the point Mark made above. My guess would be that there are natural boundaries with CCC inside the boundaries but with them quite a lot of patients who have things like PEM but don't currently meet every last CCC criteria.

    But I have no evidence for that hunch and I think evidence is what's really needed to move this forward. Evidence would have the huge advantage of moving the debate from 'this is what physicians and patients recognise and believe describes the illness' to 'here's the evidence that this definition describes a unique group of people with a common illness, clearly distinguishable from other forms of chronic fatigue'. It might turn out to be the CCC exactly as they are described now, it might be something a little broader - but at least any refined defintion would be based on how well it identifies unique patients in the real world. The experiment would be something like take a big bunch of chronically fatigued patients, collect a mass of data on them including lab test, demographics and everything required for the CCC, then use data analytical techniques such as Factor Analysis to see if groups of patients cluster together.

    It may be that if you specify just a few symptoms e.g. PEM, Post-exertional Fatigue and mental concentration/memory problems a discrete cluster will emerge that will include all the CCC patients as well as others who don't quite meet CCC. We won't know unless someone does the experiment.

    Bob's proposal's

    That would certainly be one way to do it, though I'm sure there would be objections from some to a diagnosis based on symptoms that may not have been present for 15 years

    Again, I think this is one way forward, but I have 2 concerns. The first is practical: because of the need for a full medical evaluation it's expensive/time consuming to screen patients, which is presumably why so many studies are so thin on patients. Using highly restrictive criteria will make recruitment even harder but not necessarily better. The second isn't an objection as such, but if there were empirical evidence for the criteria it would be a whole lot easier to persuade researchers that these criteria are the way to go.

    Unreservedly agree that sub-grouping would be useful! Though as bob notes, the more you sub-group, the less generally applicable the findings.

    Agree with this one too, as does WillowJ, it seems. But it isn't currently mandatory in CCC, which only require PEM OR post-exertional fatigue.

    Summary
    Phew, this has gone on a bit! Here's what I've been trying to say:

    1. I agree that getting everyone behind a case definition that separates ME from general chronic fatigue is incredibly important. I also agree that the CCC are a good place to start but as they are currently defined they do seem to exclude a lot of people, potentially alientating many patients and the exclusions may not work as intended all of the time (as observed by Klimas, Jason, Mikovits).

    2. I think some empirical research might resolve these problems. We could see if the CCC defines an discrete illness with natural boundaries or if some of the CCC boundaries are artificial and need tweaking. It's just possible that the CCC could be made even better.
  9. Bob

    Bob

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    Great stuff oceanblue, thanks for engaging with this... your post is really interesting, and helpful...

    I think your very last point, 2., about refining the CCC, is a good point, but maybe it is something that we would strive for in an ideal world.
    If we were to ask for the CCC to be changed and improved, that would take years of research in itself, and it probably wouldn't happen at all.

    So I'm trying to understand what changes we, as a community, could push for immediately, that most of our community would be happy to go along with...
    So, I'd really like to see if we could all work out a way to employ current knowledge, and the current diagnostic tools, in such a way that we could all agree on a way forwards... so then we could all push for (i.e. campaign for, or advocate for) changes that we could all agree on as a community, with one voice.

    oceanblue, you've helped with this already, by addressing my points, 1 to 4... So thanks very much for addressing those points...

    It's really useful to get some opinions on this, and have the discussion...
    I hope other people will share their opinions on this too...
    Although, I appreciate that not everyone will agree with what i'm trying to do here.

    Thanks again,
    Bob
  10. taniaaust1

    taniaaust1 Senior Member

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    I agree with Bobs quote above... I too think there is a big range of different degrees of illness with ME with some recovering some or if its XMRV some not showing full blown symptoms.

    The issue is we cant have things so broad that other illnesses are getting mistaken for it, that isnt fair on those who do have other serious medical issues to which they possibly may be getting treatment for if their doctors get off their butts and work out what is wrong with them. The only way for our illness to be taken seriously and keep on being taken seriously, is to have cut off points. ME shouldnt be a diagnoses in which patients are just being thrown into due to doctors not doing the right tests or having no real idea what is wrong with them. ME shouldnt be a waste basket diagnoses.

    I think there needs to be different catagories of diagnoses.. strict CC CFS/ME diagnoses (which the diagnoses is held even if symptoms improve some at a later point), and a separate one which thought to be probable CFS/ME diagnoses (eg not full blown ME but most probable). Then of cause there is the old just idopathic fatigue as a third diagnoses (thou who only have fatigue and dont have a symptom complex). So basically what there is now I do agree with the catagories, the only issue is the CC CFS/ME defination needs to be accepted worldwide...

    most here if the CC CFS/ME defination was accepted would be moving up to the CC CFS/ME group bringing a lot larger numbers there, so one would think more serious recognition and research.

    No matter where one draws the line.. some are going to be left out, it cant be helped if this illness does come in all kinds of severity esp before any big crash. (this illness can have periods of remission!).
  11. WillowJ

    WillowJ Senior Member

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    oceanblue, yes, I agree that PEM should be required in any case. I think that's one of the important things that distinguishes ME/CFS from other fatiguing diseases.

    I also agree with Tania, we do have to have a line, or else there is no point in having a disease class. Fukuda the way it is doesn't work. Oxford and Empirical are clearly not even under consideration.

    Whoever gets "left out", and it shouldn't be anyone with PEM, but whoever it is, we have to insist that they get full evaluations for diagnosable diseases from MDD to vit D deficiency to sleep studies. Oh, well, "a lot of people are tired" (I seriously was told this by a doctor who did next to nothing for me, prior to my having any diagnosis, after I had complained that I could not do basic personal care and chores) is not a conscionable way to treat anyone. If, after full evaluation, doctors still don't know what's wrong with a group of people, they need to get IF (idiopathic fatigue) funded and studied--and given a better name (and divided into various classes if they can find any logical divisions).

    So, for us though, we have a more-or-less-Canadian-criteria and not-so-much-Canadian-criteria crowd. Is there something we can all meet on?

    How about PEM, infectious manifestation(s), and/or neurological manifestation(s)? Do we need the and or the or? Would some people who don't meet CCC but do have PEM please chime in?

    And this would be an interim measure, until we can get something more like how MS and Lupus are diagnosed requiring the pattern of both clinical signs and symptoms plus diagnostic testing results (NK cell profile, for instance, PET scan, maybe XMRV); like Lupus and MS, the testing results would help establish diagnosis (which would pretty much require the doc to run them in order to make the diagnosis--yay!) but any particular result would not be positively required for the diagnosis (as they don't seem to be 100% universal, at least not 100% of the time, and neither are laboratory techniques always 100% accurate).
  12. Bob

    Bob

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    Hi tania and Willow,

    Thanks for your input, and the interesting points you've covered... I really appreciate this discussion...
    If you have the energy, could you please have a look at my points 1 to 4 that I posted earlier, and see if you think any of these possible solutions might work for our community, in your opinion? (I know you've both already covered some of these points.)

    I'll post them again, here:

    I think there maybe a few possible solutions to the issues we've been discussing...

    1. The first is to evaluate the patient's symptoms over the entire course of the illness, from the very beginning to the present time, and to use all of this information in an evaluation when using the Canadian consensus criteria (CCC).
    Mikovits, Whittemore, Klimas and Jason promoted this approach when they had their very interesting round table discussion at the 2010 Invest in ME conference, as they said that many of their patients would not fit the CCC after managing their illness and seeing their symptoms improve.

    2. The second solution would be to use the CCC only for research purposes, and not in a clinical setting. This would satisfy me personally, to a great extent, especially as a first step towards improving our lives. It would mean that ME researchers would then be able to carry out meaningful research on a homogeneous group of patients. It would mean that Jonathan Kerr in the UK, for example, would not have been turned down for research grants because he insisted on selecting his patients with criteria which were tighter than the official criteria. So, if he was allowed to use the CCC, then he could have carried out meaningful research on a well defined cohort of ME patients.
    And I'm not so certain that using the CCC in a clinical setting would be very useful to us anyway, esp here in the UK, because doctors are still just going to look blankly at us and say that there's nothing they can do for us, as there is no treatment.

    3. The third solution would be to have different levels/grades of ME, as Leonard Jason suggests; Grading ME, depending on the current severity, and types, of symptoms that a patient is expressing. This way, every patient would keep the ME label, but researchers would be able to work with homogeneous groups of patients whether it was a severe group or a mild group. This would be the researchers choice which group they worked with. This would only work if it was absolutely clear which patient type each researcher was working with, as only then would their research would be replicable. I believe that this would definitely be a big improvement on where we are now. (Although, if psych researchers started to try to confuse the government and the public by conflating the results of different patient types, then this would not be an improvement. But we would be able to reject their lack of scientific rigour more easily than we do now.)

    4. The fourth, is that if we all agree that ME has to have post exertional malaise (PEM) as a symptom, then this should, at the very least, have to be included in any new diagnostic criteria used to diagnose ME. I think that PEM is a non-negotiable for diagnosing ME, and in some ways, if all that happened, was that PEM was added to the current criteria as a prerequisite for a diagnosis, then that would go a long way to separating ME patients from other fatiguing illnesses.


    Any thoughts on all of these points and suggestions? Which would you accept, and reject, as a way forwards for our community, and why?
  13. WillowJ

    WillowJ Senior Member

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    Bob, sure, and thanks for re-posting them here...

    1) The problem I see with this is early diagnosis and epidemiology. Not everyone starts with a full complement of signs and symptoms. I understand that this is a problem with other diseases such as Lupus, so maybe it's not an insurmountable problem. However, in a disease that has a possibility of occurring in outbreaks, I would think you would want to be able to make a prompt diagnosis so you would know if an outbreak were occurring, but maybe a sudden lot of "probable ME" patients would suffice.

    2) Using CCC for research but not for clinical is very interesting. It would ensure a more homogeneous cohort in research while not excluding people unnecessarily from clinical diagnosis. However I think you brought up a valid concern, that doctors might have difficulty translating research to clinical application, when the criteria is different. Perhaps with an official guideline "CCC research applies to Fukuda-plus-PEM patients" it might work out, but I don't know.

    3) I do like the different levels/grades or even subsets (without necessarily designating a severity level). However this would require a large sample size for any research--we would have to be assured of large amounts of funding before making this step, and it might exclude some private practice clinics from having large enough samples. Still, I love the idea of subsets and I'm convinced subsets exist.
    I think we should wait until a larger percent of us are diagnosed (Jason's latest says only 10% are diagnosed (2009)... if we legitimize the disease and give doctors better tools, we should step that up a lot, which may reduce the "not enough patients for subsets" problem) before making subsets official as required diagnostic/research criteria (although we should move to have subsets recoginized as optional research criteria, and as promoted to doctors for treatment purposes)

    4) Simply adding PEM as an absolute requirement is a basic step that should be taken in any case. This is the least we should do. It may be the best answer as an interim measure until we can get biomarkers sorted out. It would at least exclude the accidental (and purposeful) inclusion of MDD, vitamin D deficiency, thyroid problems, Lupus, and everything else that currently slips into Fukuda. And it would prevent us from being confused with TATT.

    In connection with any of this, we do need a name change. Preferably myalgic encephalomyelitis, but really anything that is serious, medical, and doesn't contain any of the words chronic, fatigue, syndrome, or encephalopathy [which means a syndrome located in the brain].

    But I still like PEM plus requiring neurological and/or immunological manifestations. That's as simple as it needs to be and no simpler.
  14. Bob

    Bob

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    That's really helpful, Willow. Thanks very much for addressing those points. You make some really helpful and interesting observations.

    My suggestion no 1. wouldn't have any impact on diagnosis if someone has become ill recently, so I think your concerns (as I understand them) about that point are misplaced. There wouldn't have to be a period of waiting to make a diagnosis after someone initially got ill, anymore than there is already (i.e. three or six months, or whatever it is.) This suggestion was only relevent for people who have been ill for some time, so that the entire history of their illness is taken into account when making a diagnosis, including their symptoms at the beginning of their illness. (I hope I interpreted what you said correctly).

    Thanks for all your comments.
  15. Bob

    Bob

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    So does anyone not agree with the following suggestions, with regards to improving the diagnostic criteria for ME?...

    A). Post exertional malaise (PEM) should be a prerequisite for a diagnosis of ME.

    B). A patient's symptoms should be assessed over the entire course of the illness, to date, and not just a snapshot of the symptoms, when making a diagnosis.

    C). Canadian consensus criteria (CCC) should be promoted to be used for researching ME (i.e. it should be an official criteria that is permitted for research purposes.)
  16. WillowJ

    WillowJ Senior Member

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    Let me try to explain better... my concern is about the subgoup that starts with fewer signs and symptoms and gets more later. I would not have quite met CCC during the first year or so of my disease. I remember no sleep disturbance at first. Don't remember for sure, but I may also have been missing another category or two. What could they have diagnosed me with under the "evaluate the entire course of my (so far relatively short) disease" guideline when I didn't yet meet CCC?

    Then again, perhaps I had a different postviral disease first, and got ME later? But that doesn't meet Occam's Razor (it makes the explanation more complicated). However, it might mean that at that early point, maybe I would not have been a good pick for a research study, so using CCC for research might be best. I'm just not sure CCC for clinical diagnosis picks up everyone who will eventually meet CCC. Again, though, they have this same problem with Lupus, MS... diseases like this develop over time and it might take 2 years to get diagnosed properly.
  17. WillowJ

    WillowJ Senior Member

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    I agree with all of those.

    However, any sign-and-symptom criteria, including CCC, should be noted that it's an interim measure until we get one that is sign-and-symptom-and-diagnostic-testing like MS and Lupus are currently diagnosed.
  18. oceanblue

    oceanblue Senior Member

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    Hi Bob - yes, I agree and think that would definigely be an improvement on what we have now.

    In terms of effectiveness, it might be best to get some researchers on board, eg Lenny, on the assessing over entire course of the illness, so that patients are pushing for something that has already been backed by some researchers. Just a thought.

    High Noon showdown. I take your point about not wanting to wait for further research to refine case definitions. However, I do think we should be asking/demanding for more research investment in this area, because ultimately empirical evidence on what works best will be the most powerful force for getting a new case definition adopted by all researchers. (OK, biomarkers is the ultimate goal, but nailing the right case definition will probably help with that too).

    The CDC are still supposed to be organising an international conference on case defintion, though what is really going to advance things is research showing which definitions work best at identifying a unique group of patients: ME vs Chronic Fatigue. I'd love to see a head to head of, say, CDC Empirical vs CCC - which really defines a discrete disease? The same research could also tweak any boundaries on CCC as appropriate. So I think we should be asking for this kind of research alongside adoption of the modified CCC as the best definition for now. CDC don't like the patients' suggestion (which they won't)? Fine, then they can put up the money for a head to head test.

    Well, I've had my say. good luck with your initiative.
  19. Bob

    Bob

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    Something that I think is relevent for this discussion is something Dr Deckoff-Jones said in Cort's interview...

    I think this is interesting, but it is a bit confusing, as the current diagnostic criteria does allow for other unknown fatiguing illnesses (i.e. not ME, as defined by WHO) to be included in the diagnosis...
    But maybe most of the patients who the well known specialist ME clinicians see, all have the same disease (but with some "seemingly diverse symptoms").

    The interview is worth reading if anyone hasn't read it yet.
  20. Mark

    Mark Acting CEO

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