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IMEA-New M.E. Association

Discussion in 'General ME/CFS News' started by Ana, Mar 7, 2011.

  1. insearchof

    insearchof Senior Member

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    Hi Justin

    If IMEA want to reclaim what was lost ie classic ME - then I will support that most definitely. But, it must be a strict adoption and understanding of classic ME in line with acknowledged recognised medical historical literature and not just simply hijacking the name to apply to a CCC definition of CFS because CCC CFS is not ME.

    If you want to absolutely clear and straightforward in all dealings to couteract this mess - then there must be:

    * a clear understanding of ME history and advocated who are well versed in it and the historic medical literature
    * a clear annunication of facts taken from ME historical medical literature
    * a clear application of those facts.

    That would in effect mean:

    * no room for inclusiong of CCC CFS or other CFS definition in disucssions
    * no atypical this or that othat than reference to atypical poliomyelitis
    * no cherry picking.

    Maybe, just maybe if we started the dialogue there with that criteria, then - it might be interesting to see where it led and what proposals come out of that.
  2. SOC

    SOC Moderator and Senior Member

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    Gerwyn's accomplishments -- incredible or simply not credible?

    Justin, I think you have completely missed the point.

    Many "useful" academic qualification have been claimed by Gerwyn, so many that it is beginning to look ridiculous. We are expected to believe that this person is expert in an astonishing number of fields without any background evidence.

    If Gerwyn is a Director in an organization that claims to represent PWCs, I expect him to provide background documentation for the following claims to academic/professional credentials:

    almost doctorate in psychology,
    almost chartered psychologist status,
    law degree,
    degree in medical or biological sciences,
    an (apparently)extensive experience as a lab tech in a retrovirology lab,
    some claim to a chemistry degree

    Then we have the claim that he has had ME since longer than Suzy has been alive which have been directly refuted by his profile here. Bit of an honesty blip there, it appears.

    Yes, it's clear you are not a scientist, Justin, but I expected you -- Justin Reilly Esq -- to have used more critical thinking and performed some background research before you swallowed unfounded claims hook line and sinker.

    That's a lot of years of education and professional experience to account for, and not much in the way of actual work experience in any of those fields for someone who's been sick only 6 years. Sounds more like the experience of a failed eternal student or maybe the claims of an outright liar. Hopefully his bio as Director of the IMEA will clear up this confusion. A list of academic degrees and professional experiences (including where and when, as is usual) will go far to clear up these ambiguities.
  3. SOC

    SOC Moderator and Senior Member

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    ISO, I see you read Bob's thread re: finding our common ground, but you have not (that I've seen yet, anyway) addressed Dolphin's point that SPECT scans do not provide a clear line that would allow us to actually determine who has "genuine" or "classical" ME (to use a couple of the descriptions used recently).

    If you, IMEA, or anyone else wants to separate out a special subgroup of us that leaves no room for "inclusioning of CCC CFS", "atypical this or that", or "cherry-picking", then you need a clear, scientifically defined, measurable boundary which allows you to definitively exclude all the "not us". Good luck with that.

    I discovered Bob's thread after my very short discussion with you in chat about what makes classical or real ME. I still haven't found that simple, definitive border that separates "us" from "them". I'll pursue my thinking on this topic, however, on Bob's thread. Perhaps if you know of that definitive test, you can share it with us there. It would be very helpful to that discussion.
  4. insearchof

    insearchof Senior Member

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    Hi Cort

    I am sorry, but if your suggesting that CFS somewhow put ME back into the research agenda again, I for one, would like to see the long list of pubmed research on classic Ramsay/Nightingale ME after CFS.

    I think, and I may be wrong here, but it appears to me that your making the assumption that ME and CFS are one and the same illness, when in point of fact the historical medical ME literature and an anaylsis of existing CFS definitions makes it quite clear that they are not.

    So there seems very little point undertaking a comparison of what research was being done on two distinct illnesses ie: ME research at or after the introduction of CFS.

    CFS was a ''new'' illness in the USA at the time it was introduced - hence the reason to have to ''define'' it. So, understandably it generated a lot of interest and then, as we all know, the definition was so awfully broad that it left enormous scope for all kinds of researchers to have a field day with, which is what has happened, resulting in thousands of pieces of research - under variety of categories, helpful to no one in particular. Then the CCC CFS definition did some justice to all that work, by trying to pull it together for the purposes of clinicians.

    So all that can really be said is, that a new illness florished in the USA - which brouht with it and opened up a new field for research relevant to that illness. That is all.

    But it did nothing to promote classic ME, but rather contributed to the denial of its very existence.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I take what people say about themselves on the forums at face value unless there is a reason to doubt them. There are polymaths out there who have degrees and experience in several fields.

    However, with the inconsistencies of 5 yrs v. life-long and having "Gerwyn" and Gethin on IMEA website (if they are the same person) and the fact that Gethin is a leader of an ME org, I agree with you that he must put up his full background including specifics of where and when of jobs and degrees.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think the increase in research near the time the name "CFS" was adopted was mostly because of the vastly increased numbers of cases at that time, not the adoption of the name "CFS".
  7. insearchof

    insearchof Senior Member

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    Hi SOC


    I finished reading Bob's thread at 3.30am this morning and took the opportunity to get what I dont usually: some sleep and I emphasize the word 'some'.

    I also respond to posts - energy and desire permitting. I did not know that I was required to respond to Dolphin's or anyone elses points for that matter. So I am sorry if I disappointed you. However, I am not the IMEA or purporting to set out to represent the ME or the CFS community. I am also not putting forward proposals, just commenting on those being put forth.



    I am not suggesting anything of the sort SOC and I am sorry if that was the impression given.

    What I am suggesting is simply this: if those making proposals for change and those proposals involve ME - and those individuals or those who support them are calling for ''strict' application of definitions or for absolute clarity etc, then they need to apply them strictly in accordance with recorded factual medical literature. They need to read and study it and the associated materials. These materials pre date CFS, so there is no need or room for a consideration of CFS when studying or discussing ME. They need to stick to the facts and not mix a little of this, with a little of that -or ignore this or that - which is what I meant by cherry picking

    What transpires thereafter, and the relationship to PWCs is another question entirely. But there will not be a solution to these issues and no unity within the ME and CFS community until this is done - not simply by IMEA - but by all advocates - they must have knowledge, understanding and give recognition to factually correct matters relevant to ME. If advocates are not prepared to do this, they have no right to sit at the table and claim to represent or speak on ME.


    I cant recall whether ''Dolphin'' was the person who made reference to a particular study on spects mentioned there and or whether they made the point that they believe spect scans do not always pick up hypoperfusion in the brain. I will have to revisit that thread and come back to this and I will also need to cross check my reference material to do justice to your question, which is, I must say, valid and important and needs addressing. But I must say, your attitude makes me reluctant to do so.

    SOC it has taken me a few years of solid research and my life, to *appreciate* all the issues, and not at some expense to my health. You seem almost to demand that I provide you with this information and share what I know, stomping your foot in the process. Let me ask you, why should I spend the very little energy I have sharing what I know, when I am met with a less than inviting attitude from you?

    For the record, I do not see this discussion the way you do. I do not see it terms of ''us '' and ''them'. That is devise and is not very helpful in my opinion.
  8. SOC

    SOC Moderator and Senior Member

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    Yes, we all struggle with these difficulties and need to try to be understanding of each others' limitations in communication. None of us work effectively on too little sleep and never enough energy. :(

    Of course you're not required to respond to anyone's points. :Retro smile: If there's any disappointment on my part, it is not directed at you, specifically, but at those who insist that some version of "real" ME is clearly defined without being able to explain what test or criteria would distinguish "real" ME from other neuro-immune illnesses variously called ME, CFS, CFIDS, ME/CFS , CFS/ME.

    I'm sorry if I misunderstood.

    I agree with you entirely on this. No one should be hijacking the name of another illness simply because they like the name better. They should, indeed, study and clearly understand exactly what the illness is and prove that they fit those criteria.

    My only concern is that there doesn't appear to be an absolutely clear, strict criteria for ME which seems to make it easier for them to hijack the name.

    Absolutely.

    I'm not one to encourage you cross to check your reference material or answer anyone's question, particularly if you don't like their attitude.

    Based on the assurance with which people state that ME is clearly distinct from CFS and the implication that one can separate the two, I thought that there was a clear, definitive difference which could be described in a few sentences. Apparently I was wrong. I must say, though, that if it requires extensive research and reading to understand, it is unlikely to be either clear and definitive or useful as a way to distinguish between ME patients and CFS patients.

    I'm sorry you feel that way. I hope my statements in the previous paragraph clarify for you why it did not appear to me that I was "stomping [my] foot" and "demanding that [you] provide [me] with this information" that required "years of solid research" "at some expense to [your] health". If the difference between ME and CFS is so clear, I did not expect that it required years of solid research and health risks to understand. If I had understood that, I would not have asked what appeared to me at the time to be a simple question.

    If there is a clear distinction between ME and CFS and people think it's important to make that distinction then it is a question of "us" and "them". Or are you saying it is not so much an issue of "us and them" as it is an issue of "us and the other us"?

    For the record, while I have diagnoses of ME, CFS, CFIDS, and persistent HHV-6 infection from respected US ME/CFS doctors, I have no idea whether I would be considered a "classical ME" patient or simply a CFS patient since no one seems to be able to explain exactly where that line is drawn in any useful way.
  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    There's some confusion about the history in the UK - CFS only began to be widely used after 1996 when the Royal Colleges of Physicians, Psychiatrists and General Practitioners agreed on that classification ISBN 1-86016-046-8.- prior to that there had been no agreed use of M.E. Research was indeeed limited pre 1996 but then there was no International acknowledgement of scale of prevalence. To understand how the illness was perceived (hidden ?) requires extensive sociological examination - for instance the role of women in society and the perjoritive view of mental health impairment (ascription of hysterical neurosthenia etc) are likely to have had significant masking effects on epidemiological analysis.

    Research values in the US and UK are frequently divergent, certainly taken over a 30 year period there will be huge differences in focus, and of course the US spend on medical research (Government, non profit and private) dwarfs that of the UK. UK research has shown itself to be highly efficient but at the cost of narrow focus, the consequence of which is that less prominent/urgent areas get ignored totally, rather than just getting a smaller share. Basically I don't think we can draw any conclusions about research commitment based on historic classifications in respective countries - there are just too many variables.

    Battling over the name is pointless - there's no clinical basis to use M.E (encephalomyalitis or encephalopathy ?) because there's no research that demands use of that terminology; even if Ramsay et al are invoked to support neurological description there's no reason to conclude that the name M.E competently describes a distinct patient group. M.E has served the patient population in the UK for branding purposes and I can't see AfME, IIME or the MEA changing their names any time soon, but that's an advocacy issue not a scientific one. I come back to the point I made previously:

    There is a way to dispose of the name/classification anxiety, and that is to employ a simple logical test which matches any one notional name/classification against any one other notional name/classification:

    "what is the probability that name/classification A more accurately identifies a patient group whose members share underlying aetiology than does name/classification B ?"

    without being able to test for aetiology there is no way answer the question in real terms, which leaves us at this stage in the position that all names/classifications have an equal probability of accurately identifying a patient group that shares underlying aetiology i.e pursuing the differential is pointless, both clinically and in research terms. The only issue regarding names/classifications that can currently be addressed is that which relates to the provision of services and support, and that it is a purely pragmatic issue which needs to be dealt with in relation to individual National health care arrangements.

    IVI
  10. insearchof

    insearchof Senior Member

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    HI Soc

    Thank you for the points of clarification.



    1. There are in fact, a number of clear differences, which can be described, but I am unable and unprepared to do so, by reducing it to one or two lines. This also applies to the diagnostic approach.



    2. I wished to check my notes and materials on spect scans for the sake of accuracy and to provide detail, for the purposes of making a meaningful contribution on the subject matter and because my cognitive capacity is limited.



    3. Spects -do not require extensive research or reading to undertake or to understand. A simple explanation on their function and application for diagnostic purposes in ME can be found in Missed Diagnoses Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, Hyde, B 2009. A great little book selling online for a few dollars.




    4. Whilst it took me personally, years of solid research because of a. health limitations and b. I personally choose to read all relevant material (medical papers, text books and articles) in order to examine the facts in detail for myself. That was a personal choice.

    To suggest though, that the material is therefore neither clear, definitive or useful to distinguish between ME and CFS is a claim without foundation, which if left unaddressed might deter others from exploring the subject. I can confidently say, that the online materials that I have also considered and read here: www.hfme.org and are easy enough to read on the subject matter and those interested might like to start there.



    5. Again, the distinction and diagnostic difference/criteria for the purposes of ME does not require extensive research and reading to understand either. Just energy.

    Having been busy in this thread/and with limited health, I have not be able to get to that. In the interim, you might like to start reading about it yourself - here: www.hfme.org or not.


    I am sorry SOC, that to date, none of your physicians have been able to explain the distinctions, but if it's any comfort to you - many doctors/physicians I have encountered over the yeras, were unable to do explain it to me either. Hence my own reading and research. Hardly surprising, given the general denialism on the subject, the mis information and or lack of general interest or desire to revisit this important area of medicine.


    ISO
  11. insearchof

    insearchof Senior Member

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    Hi IVI


    I think you have failed to appreciate that this is far more than a battle over a name.

    Those who generally think so, are those who have never bothered doing the required reading on the historical medical science associated with ME.

    Further, anyone who has read the historical medical literature on ME would never have made the statement that ''there is no clinical basis to ...ME'' and that ME is something merely associated with branding or a form of marketing in the UK. :eek:

    The most extraordinarily ignorant statement, I have seen so far on this subject.

    Please do yourself a favour and pick up a copy of The Clinical and Scientific Basis of ME and CFS - a 750 pg medical text book on the matter, and start reading the scientific literature.
  12. Bob

    Bob

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    A simple name change might not make much immediate difference on its own, as it hasn't in the UK, unless other changes are also made. (Note that for 'practical' purposes the government and the NHS treat it, and refer to it, officially as CFS/ME in the UK).
    But a name change can be an important starting point for our community, and like you say, it can be a useful branding tool, which can help to improve public opinion towards the disease.
    More importantly than a simple name change, I think most patients would like a change to the official diagnostic criteria used, to at least include post-exertional malaise, so that we can exclude psychiatric illnesses from being included in a ME diagnosis, and so that ME becomes a more homogeneously defined disease. There is a debate to be had over which criteria and definition we use for ME.
  13. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What I wrote was "there's no clinical basis to use M.E (encephalomyalitis or encephalopathy ?) because there's no research that demands use of that terminology". No matter how much we may want Goldstein, Hyde and Levine to be accepted as 'authoratative' across Global clinical and research interests, they are not currently accepted as such, and more significantly neither is the body of reference given in The Clinical and Scientific Basis of ME and CFS accepted as an 'authoratative' body of description. One can marshall all the evidence one wants, but if no one that matters is listening, it will not achieve change. In that light it is reasonable to ask the questin - 'what's the point of the argument ? It is circular and therefore 'pointless.

    One doesn't need to know anthing about the literature to address the logic of the situation which is why I continue to pose the question:

    "what is the probability that name/classification A more accurately identifies a patient group whose members share underlying aetiology than does name/classification B ?"

    with the condition that:

    without being able to test for aetiology there is no way answer the question in real terms, which leaves us at this stage in the position that all names/classifications have an equal probability of accurately identifying a patient group that shares underlying aetiology i.e pursuing the differential is pointless, both clinically and in research terms.

    Of course if people want to engage in circular discourse, they are free to do so.

    IVI
  14. Bob

    Bob

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    Hi insearchof, and sickofcfs,

    You are both interested in the same subject here, and you're both on the same side, and this is exactly why I started the other thread...
    It is so we can all, together, explore all the different opinions, and facts, and history, and criteria etc etc etc, surrounding the subject, in order to work through our differences, or at least to understand our differences.
    It was aimed at helping us all to avoid these misunderstandings between each other, and to explain to each other our individual perspectives on the subject.
    It seems to me that the subject is never clear cut or black and white... But there are loads of different opinions about both the names and the diagnostic criteria.
    I think it would be so helpful if we could all understand all the aspects of this subject, and even if we don't all agree with each other at the end of it, at least we will understand where everyone else is coming from on the subject.
    Everyone's got something valuable to add to the discussion.

    Bob

    ETA. I see you've both posted in the other thread now, so I'll meet you both there.
  15. Bob

    Bob

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    The point in discussion/debate is to come to a fuller understanding of all the issues.
    Then, armed with all the knowledge, and with an understanding of each other's perspectives, the patient community can push for change together, politically.
    That way, we will make the authorities listen, as has always been the case with making progress with this disease.

    I don't entirely agree with your suggestion/question here... This is all about heterogeneity and homogeneity... If you use a more exclusive criteria, then you are more likely to create a more homogeneous set of patients. Although I do agree that until we won't have certainty about this until we have widely used biomarkers, or at least researched biomarkers with a large number of ME patients, on a large scale project. Also, the existing definitions of ME (i.e. Ramsay, CCC) are not based on thin air, but are based on evidence or observation.

    Many ME patients recognise that there can be differences between ME and other chronic fatigue states.
    In terms of research, it is especially important to use a more homogeneous diagnostic criteria, so saying that this is a circular argument is without foundation, as it is actually a pertinent and important discussion to be had, for all of our futures.
  16. Angela Kennedy

    Angela Kennedy *****

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    Well said iso.

    In addition - IVI seems to set a lot of store by appeals to authority (irrational ones too) rather than actual historical accuracy in science and medicine - of which s/he may be ignorant (this particular issue). This way of thinking is befuddled, and has added to the continuing obfuscation of what should be a reasonably simple issue - of a type of illness with neurological and other deficits and similarities to various other conditions. There are some key social/ideological complexities around the way this illness has been represented (and misrepresented) as some sort of phantom or chimera, certainly, but these are different from the actual physiological manifestation of the illness itself, which isn't even that remarkable, as illnesses go.

    Note how iso's highlighting of there being an actual hidden (but nevertheless extant) scientific history is misrepresented as an irrational desire to invoke authority of those who do not (allegedly) deserve it. This way of thinking, about others who are pleading him/her to read about the actual science, is as far from rational analysis of the science and reasonable scepticism as you can get, sadly.
  17. Dolphin

    Dolphin Senior Member

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    I'm not sure if that is true. I know somebody who attended Byron Hyde as a patient and he depends on radiologists to read them. This person (who isn't not me, in case anyone wonders) never in fact got definitive results on their SPECT scan. I can't say anything more about this person and their medical history without their permission. But what I heard made me more sceptical that the results of SPECT scans have 100% sensitive and specificity for an ME diagnosis which is the impression sometimes given.

    I think it would be better to continue discussion of SPECT scans on the other thread: http://forums.phoenixrising.me/show...ia-can-we-resolve-our-community-s-differences . What I said was not accurately mentioned on this thread but I don't want to derail the discussion here. As I said on that thread, I don't know everything about SPECT scans and am happy to be educated on how they can be used in the diagnostic process with specific information e.g. threshold information.
  18. Bob

    Bob

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    I totally agree with that Angela... It always amazes me how identical the experiences of all my local ME contacts and friends have been with the illness since we became ill... The lives of my local friends, and the nature and course of our illnesses, are almost identical, with only small differences in which particular annoying symptom is flaring up at any particular moment (You know, those irritating troublesome symptoms like sore skin, swelling and bloating, painful joints, dodgy eyes etc etc etc.) It's remarkable how identical our main symptoms are... It's hard to notice all of these similarities on a forum like this.
  19. Wayne

    Wayne Senior Member

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    Hi ISO and SOC,

    I've been very much appreciating the dialogue between the two of you. Thanks much.

    ISO, since you've done years of research which has given you insights on differences between ME and CFS, I was wondering how you feel about the term ME/CFS. Also, even though you feel they are different diseases (I feel you're probably correct on this), do you feel it is advantageous for them to be lumped together for research purposes? Or would you prefer they be researched separately?

    It looks like you've been writing a lot today. If you have the energy for perhaps a short, succinct answer, that's all I'm really looking for. :angel: Cognitive dysfunction has been a huge factor for me for at least 20 years now, so scientific details aren't really my forte anyway. Thanks. :Retro smile:

    BTW, I admire your "relentless persistence" in doing years of research to better understand and address the nature of what you're dealing with. I've mostly focused on trying to find things that will help me be more functional, and leaving the scientific details to others.

    Best, Wayne
  20. Bob

    Bob

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    There's a bit more discussion on that subject from both ISO and SOC, and others, on another thread, if you haven't seen it Wayne, if you are interested.
    (I'm not suggesting you read the whole thread, cos it's a long one, but you might like to see the last few posts)...

    http://phoenixrising.me/forums/show...ia-can-we-resolve-our-community-s-differences

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