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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

ME and cfs to be classified as seperate illnesses

Discussion in 'General ME/CFS News' started by Gerwyn, Apr 21, 2010.

  1. Enid

    Enid Senior Member

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    Can't help feeling ME/CFS is basically the same thing and perceived difference has to do with with severity at onset, and the damage done, some of which may be wholly or partially recovered. Our group (years of) are left with varying problems. Fluctuations or Relapses (better) are due to the still ongoing disease process. Fatigue is common at all stages only, (and on the whole gut problems).
     
  2. eric_s

    eric_s Senior Member

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    Thanks. Certainly "benign" is a term that is not correct and harmful, if this definition is correct http://medical-dictionary.thefreedictionary.com/benign.

    As long as the cause of ME/CFS is not known, i think in a way it's ok to have it in there under a different name than "Post-Viral Fatigue".

    R means "Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified" and R50-69 "General symptoms and signs", at least under the 2007 version http://apps.who.int/classifications/apps/icd/icd10online/. I don't know if that is a bad place for ME/CFS, but then i'm no doctor.
    But i think it would be very bad if they lump us together with "Chronic Fatigue":eek:
    This must be avoided and i don't know how any people with half a brain, who are working on this code, could let this go through :confused:.
    For those cases where the ME/CFS is not triggered by a virus, i would not mind having "R53.82 M.E./Chronic Fatigue Syndrome", but distinct from "Chronic Fatigue"!!, even though i would prefer not to have a split of true ME/CFS cases into 2 different categories. NOS means "not otherwise specified", right?

    Is there any "Post-Viral Fatigue" that is not ME/CFS? In this case they should separate us from those cases, too, i think.

    The only scenario under which this change in codes would halfway make sense, would be, if they have found the viral cause of ME/CFS, but are not making it public yet. And there are no cases that fit one of the serious CFS definitions, that don't have this viral cause. But i would not blindly trust this to be the case...

    But how could this be stopped? Once again, i fear there is no chance to achieve something like this, without strong organizations fighting for it. We, as individuals, probably can't have any impact in such a decision. I will try to talk about this with people in European CFS orgs. But i'm not very much involved yet. And time seems to be quite short!!

    We really have to be much better organized and "equipped" for those big fights.
    For example, it would be cool, if we could just buy a paper like "Retrovirology". That would mean no more bs studies and a channel to publish for those who say at the moment their studies are not accepted. Unless they are aiming for better journals like Science of PNAS or the like and would not want to publish there anyway.
    Now i'm only dreaming, but it's a nice thought.:cool: Actually i have tried to look up the numbers about the company publishing "Retrovirology" to see if something like that would theoretically be feasible some weeks ago, but if i remember correctly, the UK company register did not provide numbers that would allow a conclusion. Plus you have to pay for this information. A strange understanding of public service in my mind. And if we had that kind of money it would probably better go into other things anyway.
     
  3. Mithriel

    Mithriel Senior Member

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    Enid, ME is often not severe at onset. US CFS has probably selected for patients who actually have ME, but UK CFS is more or less idiopathic fatigue. Neurological symptoms, a sign of ME, are considered exclusionary for Oxford CFS so it actively selects out those with the severest ME.

    What Justin is saying is that the US is moving towards the UK system so that CFS will come to mean simple idiopathic fatigue. While those patients also need health care people who actually have CFS or ME as it used to be considered will be greatly disadvantaged.

    Consider that the fatigue in MS is of the same relationship to the complete disease as it is in ME or US CFS. It is easier to see then how much of a difference it would make if everyone who feels "tired all the time " (a description used by the UK proponents) were now considered to be examples of MS.

    Mithriel
     
  4. Enid

    Enid Senior Member

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    Mithriel, - my "onset" described loosely as it covers some time - my own for instance deterioration over some time starting with a sore throat which nothing would ease turning to cognitive difficulties, excessive (inertia) immobility turning to the very worst - encephaly etc. Must have taken about 3 months. All the other well known symptoms followed (as Royal Free) with severe relapses - passed out 3 times. Onset therefore should not be seen as "sudden". After 11 years of relapses (not so severe) and with reactive Osteos (according to my Neurologist who always believed Viral) one hopes for early diagnosis and treatment for all BEFORE all the rest sets in. All the best to you there. Must add (4 Doctors in my family) "tired all the time" was term for we don't yet know.
     
  5. Mithriel

    Mithriel Senior Member

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    I think the idea of "onset" is confused because CFS demands a 50% reduction in activity levels for six months. I did not experience that for about fifteen years after I became ill :)

    I was never well after a bout of Summer Flu but continued at school, working Saturdays and going out dancing!

    Ramsay said that the initiating infection could be trivial. It is people who get glandular fever then develop ME who have are most likely to have the sudden collapse to severe ill health.

    It sounds like your illness began with the sore throat, a sudden onset.

    Still we may all have been infected with XMRV already, just waiting for another virus to come along to push us into neuroimmune disease.

    "Tired all the Time" was the name of a seminar held by the psyches last year. I felt they had hit rock bottom :D

    Mithriel
     
  6. Enid

    Enid Senior Member

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    Quite so Mithriel, and BOO to the Psyches still chasing their tails ! Hope you are in best health possible.
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It's a bad place for "CFS" to be, imo. If you read the explanatory text at the beginning of the R section, it basically says these are all just random symptoms and Bull Shit, NOS. And yeah, "NOS" means "not otherwise specified." A nice way to imply "CFS" is just the symptom fatigue or a wastebasket. I'm pretty sure there is no such thing as AIDS, NOS or MS, NOS for example.

    CDC is in charge of ICD-10-CM (under 'license' from WHO). This is a conscious attempt to crush us by CDC, as per CDC's standard operating procedure.

    No, there isn't any "Post-Viral Fatigue" that is not ME/CFS, either in reality or under ICD-10-CM, as far as i know. In my casual web surfing, it seems there are a few medically recognized diseases that medicine conceives of as rare such as "chronic encephalomyelitis", "Theiler's murine encephalomyelitis virus (TMEV) disease" and post-polio syndrome that are, i would think, most probably actually sub-sets of ME; but they currently don't have much practical significance in terms of impacting the issue of 'coding' we are here considering. (although i do think it is very important that the connection between all these 'chronic encephalomyelitis' diseases be investigated).

    I totally agree. Thanks for asking around. I think this should one of our very top advocacy priorities as a community (until ICD-10-CM is proposed to become more set in stone in October). I don't want to look back on this time with regret that we didn't do all we could.

    I actually think looking into something like buying a controlling share of one of these type of journals is a great idea to at least look into to assess if it would be worth pursuing at some point. We need to impact the journals more as a tool to spread the truth to physicians and laypeople alike! Widely used secondary and tertiary info sources such as medical textbooks and wikipedia, etc. draw almost exclusively from the review articles published in journals, which are dominated by the usual charlatans Wessely, White, etc.
     
  8. Otis

    Otis SeƱor Mumbler

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    I'm not sure which is more evil the ICD mess or the DSM-V - combined they are really, really ugly, and really demand the attention of adocates.
     
  9. WillowJ

    WillowJ Senior Member

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    Benign was used originally because the disease doesn't kill immediately like polio can (it was compared to polio originally). They dropped that part when they realized it wasn't helpful because of how serious the disease was, but I don't understand why the WHO nomenclature never changed.

    As far as being classified as vague symptoms, I'm pretty sure that's part of what contributes to why doctors patronize us. If no one can figure out what kind of a disease it is, it must not exist. And what Justin said.

    As far as where it should be classified, the original neurological classification was based on autopsy evidence. Dr. Nancy Klimas says there is evidence of brain inflammation (presumably in current research). I don't know what research exactly that is, other than the subset that has MRI lesions. But I'm certain Klimas knows what she's talking about and knows lots more than me. :)

    From what I've heard, I don't think it's actually allowed under WHO rules for member nations to be creating their own clinical modifications. I also don't think it's allowed under WHO rules to fractionate a diagnosis and list it twice (even if you do some ME/PVFS vs. NOS nonsense).

    Maybe we could campaign for them to just skip ICD-10 and go straight to ICD-11, since we have some objection to learning new codes in this country. They don't plan to implement ICD-10 until like when ICD-11 comes out, right? Do we know how ICD-11 is supposed to handle ME/CFS?

    All I know about ICD-11 is that WHO has never changed ME's classification previously (although they let misdiagnosis of CFS influence their index), but that CDC is an advisor to WHO.
     
  10. eric_s

    eric_s Senior Member

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    Yes, if you read what they say here http://apps.who.int/classifications/apps/icd/icd10online/, the R section might not be the right place
    I was not sure if the G section (diseases of the nervous system) is correct, because there also seem to be immunological problems, and maybe problems from yet other sections, in ME/CFS. So where to put such a disease best?

    As far as wheter it's legal to modify the ICD, i have found this:
    http://www.cdc.gov/nchs/icd/icd10cm.htm
     
  11. eric_s

    eric_s Senior Member

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    But what if we do have vague symptoms?
    If they react to the reality of our disease in a wrong way it's them who are wrong and who must change. I don't see any other way, even if that might take some work...
    And we should do whatever we can to produce more and more evidence to reduce the "vagueness".

    I'm not saying the R section is the right place, that's not what i mean, i do now think it's probably the wrong one.
     
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  13. Ian

    Ian Senior Member

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    CFS/ME should be renamed to the, we don't know because we are clueless disease.
     
  14. 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?
     
  15. 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?...
     
  16. 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.

     
  17. 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)
     
  18. 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.
     
  19. 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.
     
  20. 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?
     

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