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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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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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    Message to Moderator

    Bug in the system: Is not posting entire content.
     
  2. insearchof

    insearchof Senior Member

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    Hi Dolphin

    I agree with you about relying on science / scientific fact and not taking things on faith. I suggested therefor that the fault may lie in the procedure not the spect itself.

    Further, as I rely on scientific fact and am all for healthy scepticism (which is why I researched the facts associated with ME for myself), I would not be inclined to rely on hearsay from other patients as fact.

    I agree that all your doing is speculating on Byron Hyde and his motives and its not scientific or very helpful.

    Byron Hyde has not made a definition based on his spect findings either, as you seem to suggest. The definition of ME had been medically recognised well before he even entered the field.

    He uses spect, as one of the more successful tools to diagnose evidence of damage to the central nervous system. It is a diagnostic ''aid'' only and it is not the only one he uses..... but one which he has found to be extremely useful and reliable
     
  3. insearchof

    insearchof Senior Member

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    continuation of cut off post to dolphin


    ...but one which he has found to be extremely useful and reliable – (as have others) I might add and so much so, that he states he will not *generally* confirm a diagnosis of ME without such evidence from a spect. However, he must and does I believe, assess everything as a whole and will (and I think has, I have read) repeat Spects when and where necessary.

    You also have to remember, that spects are machines. Like all machines, some are far more superior than others due to technological advances, age and care. So the outcome can also been influenced by these factors.

    As for exercise effecting the outcome, I cannot recall any medical literature on the matter- but I am not sure how it would adversely affect the outcome of the spect. If spects are being done to determine hypoperfusion/vascular difficulties/lack of blood flow - then exercise before the spect would give a more accurate reading I would have thought - in so far as activity increases circulation and if after activity there is little flow in the brain - then that might corroborate that finding. If the subject is at rest, then I would have thought that, if the condition was present, the result would be the same. Maybe I am missing something there?

    Finally, spect scans are not customarily employed, not because they are unreliable diagnostic tools for evidence of damage to the central nervous system, but in a bid to keep patient expenses to a minimum. What you find is, that they are heavily used when a patient is involved in an insurance claim and or litigious matter, as they provide some of the best accessible evidence of damage to the central nervous system.
     
  4. Dolphin

    Dolphin Senior Member

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    Neither of us should have to rely on hearsay from patients or an individual physician in private practice. The thresholds of how SPECT scans can be used should be out there - where are they?

    You asked me the question.

    This is what I said:
    There may be other definitions of M.E. But he wrote one.
     
  5. insearchof

    insearchof Senior Member

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    Hi Dolphin,

    I do not rely on patients hersay, you apparently do.

    There has not been a lot of published research on SPECTs in ME because there has not been any research in ME of any real significance in close to 25 years.

    Therefore, I am inclined to rely on a world renowned physician who has devoted most of his life to the study of ME and has seen more ME patients and spect scans from such patients than any other.


    Indeed, to confirm that is all you were in fact doing.


    ISO
     
  6. Dolphin

    Dolphin Senior Member

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    If one looks at page viii of "The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", it is entitled "The Negative Effects of an ME/CFS Dysfunctional brain". It shows changes including 24 hours later. I presume this is what was being got at by the advice about controlling activity. I'm going to bed soon so can't write more.

    To be specific, I accepted in this instance first hand eye witness account as quite likely to be true, sufficient to put doubt into my mind about how definite SPECT scans were as a diagnostic tool. Doubt that subsequently increased when I read the Da Costa et al. paper which talked about average differences, not thresholds that had excellent specificity and sensitivity. And doubt which has increased when nobody has subsequently given me such information.

    My argument doesn't depend on knowing why Byron Hyde might be saying something that is incorrect. You asked me why he might say something and I answered you clearly stating I don't know but listed some possibilities as you asked.

    Anyway, I'm not interested in having a "he said, she said" debate. I am interested in the details of how SPECT scans can be used to diagnose M.E. and what sensitivity and specificity it has. And how should the test be performed e.g. in terms of mental and physical activity before it.
     
  7. insearchof

    insearchof Senior Member

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    hi Dolphin

    I wish to restate that Byron Hydes did not create a new definition of ME. You are confusing definitions used, with diagnostic tools employed like spect, (and it is not the only one used) by Hyde to confirm his diagnosis.

    Further, could you please show who and where Spects are being claimed as being 100% for specificity and sensitivity please?

    it is a rare to make this claim in respect of any medical test, and it is doubtful, as even the results of the most sensitive and specific
    tests can be skewed for a variety of reasons.

    Some may want such a test, but that thresholds is unrealistic in my opinion. Medical science would like to see such but does not demand or require it. If it was otherwise, nothing would pass out of regulatory bodies like FDA and TGA and into clinics/ commercial market place.
     
  8. Jackofit

    Jackofit

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    M.E. was covered up by the invention of CFS - Reeves Disease (CBT/GET)

    The WHO official clarification of ME and the troublesome term CFS
    "ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive." - Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4th February 2009.

    Note: CFS is currently listed in ICD 9 CM under Symptoms, Signs and Ill-Defined Conditions, and is currently defined by the Reeves Empirical Criteria as a psychosomatic condition which the CDC recommends CBT and GET as treatments - therefore CDC/Reeves CFS is psychological chronic fatigue, it is not neurological ME.

    http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - An Overview of the Canadian Consensus Document
    [An ICD 10 G93.3 ME definition]

    Classification
    ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS [in the index only], is classified as a neurological disease in the World Health Organization’s International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder.
     
  9. insearchof

    insearchof Senior Member

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    Hi Jackofit

    Thank you very much for that post Jackofit and especially for the quote from Dr Robert Jacob - have not seen that, but very encouraging.
     
  10. Wayne

    Wayne Senior Member

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    ME/CFS Forums = IMEA

    Thank you kjm for the important points you’ve made on this thread. I think your above paragraph is spot on, and I have observed the same. From my perspective, it sums up succinctly why anybody with ME/CFS should very wary of having the leaders/directors of ME/CFS Forums representing our interests.

    My own experience: Last year, I was invited by Wildaisy (Partricia Carter) to join their forum, and signed up shortly after. Each time I visited however, I saw a lot of what was described above, and generally stayed away. On one visit however, I felt Dr. Nancy Klimas was being treated disrespectfully by Gerwyn (apparently Gethin Price), and posted that I felt she deserved better than what she was getting.

    My 3-4 posts (very mild in my opinion) resulted in a separate thread being started (with my name in it) by one of the members, pillorying me for apparently having the temerity to ask that a little more respect be shown to Dr. Klimas. Some members voiced strenuous objections to this thread; a moderator quickly locked it, until he/she had a chance to discuss it with Wildaisy, who I think is considered an administrator.

    OK, to me, this is a failure of leadership. And now she wants to assume another leadership position with the IMEA representing us? I find this a little difficult to fathom, since she really doesn’t seem to care about the well being of those who come to visit/post on the ME/CFS forums.

    Once her decision came down, it was a green light for others to join in. It soon degenerated into a free for all piling on thread. Many seemed to take great delight in the hilarity of this exercise. They made various comments suggesting how “free” they felt to post anything they wanted with no repercussions. Others however, objected strenuously. Parvofighter, from what I can gather is a respected member of both forums, posted the following:

    Another poster replied with the following:

    Keith Baker, one of directors of this new IMEA, seemed fairly distressed by what was transpiring, and posted several reasonable and responsible posts. He eventually made a point regarding the original post:

    Others agreed, and the originator of this thread eventually deleted his original post.

    Gerwyn and Robyn both chimed in: Gerwyn felt I had gotten “what I deserved” and had some disdainful remarks regarding “gratuitous niceness”. Robyn argued for an un-moderated forum, and felt I at least didn’t have to worry about being banned. Perhaps she felt that should be some kind of consolation to me.

    So, four of the five listed directors of this newly formed IMEA replied on that thread. Of those four, Keith Baker is the only one who comported himself in a way that would lead me to believe he could be trusted with a position of responsibility involving our interests. Robyn’s post was fairly neutral, but certainly did not display any leadership qualities I would look for in an influential advocate. Gerwyn and Patricia exhibited qualities that I feel should preclude them from ever being given license to speak for all of us.

    Final thoughts: This IMEA, which is apparently attempting to represent all people with ME/CFS, seems to be essentially an offshoot of the ME/CFS Forums. If they want to create some kind of separate “advocacy arm” of the ME/CFS Forums, that’s fine with me. Just spell it out clearly, and don’t use an acronym that can be easily confused with any other ME association. If they are all so certain about the ideals they live by on that forum, then they should be able to create a name for themselves that can draw on the strength of that forum. Perhaps something like, “The Advocacy Arm of the ME/CFS Forums”.

    Some may wonder why I ever decided to post on the ME/CFS Forums to begin with. In short, I was hoping I could perhaps “bridge” some of the differences between PR and this new ME/CFS Forums, something I had expressed on some of my PR posts. I was also hoping to “reconnect” with some friends/ acquaintances. Interestingly, two of the ones that I had looked forward to reconnecting with the most ended up joining in the piling on. Hard for me to figure out. I thought for sure they would refute some of the accusations being made against me (such as being a flamethrower and a troll). I guess the momentum of a piling on thread was too much for them to resist. Very strange behavior over there. Leadership from that forum seems like it could result in some very strange behavior in important advocacy situations. As I mentioned in an earlier post: No thank you.

    Wayne
     
  11. Jackofit

    Jackofit

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    Insearchof, the truth is the first casualty in any war! There is far too much ignorance about how the well-defined epidemic neurological disease ME was covered up by the CDC and replaced by the indefinable CFS, which has downplayed the disease as some kind of depressive fatigued state that can be fixed by CBT/GET! The CDC has cemented its position on Reeves CFS, which is not coded in the US as a neurological disease, so there is a compelling reason for groups to reclaim the correct medical term M.E. to avoid the neverending confusion with CFS/chronic fatigue. I think this is what the IMEA is nobly aiming for.

    However what goes on at mecfsforums or this one which is no better, is another matter, and should not deflect us from the truth and reclaiming ME.

    CFS has been the worst thing to happen to us, it covered up the fact that ME could be diagnosed by MRI and NK cell dysfunction at Lake Tahoe, which could have seen us get treatment 20 years ago. The CDC covered it up with the help of CAA every step of the way. CAA even did their CME education program, which misinforms doctors and keeps them so ignorant about CFS they don't even know about ME. CAA sold us out for the money and have left so many people ignorant of the difference between the neurological disease ME and the CDC invention of CFS, which is now Reeves psychosomatic BS.

    ME epidemics have been with us since 1934, and ME has been classified by the WHO as a neurological disease for 42 years! No-one wants to end up in the CFS wastebasket, and the truth of the neuro-immune disease ME cannot be confused with CFS or chronic fatigue or depression or burnout. I say call a spade a spade, if you have ME then get your diagnosis fixed, its in ICD9-CM at 323.9 a neurological classification, and in ICD10-CM, ME will be at G93.3 the same as the WHO ICD neurological classification. If you have a diagnosis of ME then you can't be labelled as chronically fatigued and needing CBT/GET, courtesy of the CDC!
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Any chance you could give a medical/clinical/research definition for neuro-immune disease ? Or any diagnostic criteria related to ICD10-CM ?

    IVI
     
  13. insearchof

    insearchof Senior Member

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    Hi Wayne

    I was saddened to have read of your experience at the ME/CFS forum.

    Whilst I think our views can be quite passionate on these subjects from time to time, the behaviour you detailed that took place is not necessary, desirable or acceptable.

    It is troubling and I am sure, you found the experience very hurtful and disappointing.

    ISO
     
  14. jace

    jace Off the fence

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    I found Wayne's account of what happened on mecfsforums strange, and not as I remembered (mind you, realities are subjective) so I went back and re-read the thread. Here's a link to it from Wayne's first contribution. Read it and see if you still feel the same. BTW the thread says Angela Kennedy is a guest, but she is now an active member - not sure why that is. http://www.mecfsforums.com/index.php/topic,3546.msg37805.html#msg37805

    There's a lot of demonizing here about mecfsforums members, which I do not think is deserved. Attack is the best form of defence, perhaps?

    As far as I know, Gerwyn Morris is not Gethin Price. I have seen Gethin's name linked to another forum alias, can't remember now which one. Gerwyn has stated his qualifications several times, they have always been the same ones, a bachelors in Biomedical Science, a bachelors in Chemistry, plus an LLB, whatever that is. (later) It's a bachelor in Law, having googled the term.
     
  15. insearchof

    insearchof Senior Member

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    Hi Jackofit

    I agree entirely.

    Nothing should deflect us from the truth and reclaiming it. We do not need to reclaim ME because it was never lost to us, just it's existance denied.

    Having read the historical medical literature, I have felt the way you do - that there is compelling reason for us to relcaim the truth and insist on its recognition, as well as the correct and appropriate use of terminology.

    The more awareness there is about what ME is - the more probable that doctors would consider a diagnosis of ME before going to CFS (the later being a diagnosis of exclusion) and the less likely the number of persons ending up with a CFS diagnosis ....as I believe that CF aside, most patients (especially those with a CCC CFS diagnosis) would probably be found to have ME. But they must be diagnosed in accordance with ME literature and not CCC CFS criteria - as the later is not ME.

    With less people given a CFS diagnosis, the less likely a doctor would be to consider that and the more likely people with CF would be investigated for the cause of such and not left to languish with CFS and doctors simply responding, ''there is nothing we can do''
     
  16. Kina

    Kina Moderation Team Lead

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    Jace -- the thread that Wayne is referring to, the one started about him by Sunshine (now xMRV+Baby) can only be found in the private section of the forum. It was really insulting, referring to Wayne as a troll and flamebaiter to name a few, all because he mentioned Nancy Klimas in another thread. I would say Wayne is remembering things properly.

    As far as the Gethin/Gerwyn link goes -- would you or Gerwyn care to explain how two almost identical rebuttals with the same grammatical and punctuation errors ended up in two different places on the internet -- one rebuttal by Gerwyn, one rebuttal by Gethin. If somebody, stole Gerwyn's original ideas and paraphrased them, the grammar and punctuation would have changed, they did not. Interesting that Gethin, on the IMEA website describes himself as retired chemist -- seems to be Gerwyn's area of expertise. Gerwyn has also signed his name on sites as "Gerwyn J Morris, Psychology, Dip Law", "Gerwyn Johnson from Swansea", and "Gethin Price".

    It's interesting that on a thread on the mecfsforum, somebody has alluded numerous times to the Gethin/Gerwyn connection. One would think that if the connection wasn't true, then Gerwyn would have a lot to say about it, but for some odd reason he is ignoring it. If somebody was claiming I was somebody who I was not, I would stick up for myself. Seems odd he has said nothing.
     
  17. Dolphin

    Dolphin Senior Member

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    What do you call the "The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)": http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    Extract:
    So it's new.

    Here's one example:
    http://forums.phoenixrising.me/show...-s-differences&p=156848&viewfull=1#post156848
    This sort of claim which I have heard before prompted me to ask what are the details and then my name turned up in this thread. I don't believe anyone has given them so far.
    People can criticise me if they like but it's not dealing with the issue of where are the details that can be passed to clinicians, researchers, put up on websites, etc.
    I think this discussion might be better continued on that thread.
     
  18. Bob

    Bob

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    Thanks for your helpful post, Jackofit.

    Just to let you know, like Suzy said earlier, there are existing threads about the ICD's, so this subject has been discussed on the forum, although it seems that I'm quite ignorant about them, so thanks for your post.
    http://phoenixrising.me/forums/show...-DSM-5-v.-WHO-s-ICD-in-the-US&highlight=icd11
    http://forums.phoenixrising.me/showthread.php?3062-DSM5-Ticket-back-to-Reevesville
    http://phoenixrising.me/forums/show...ft-scheduled-to-launch-in-May&highlight=ICD10
    http://phoenixrising.me/forums/show...-we-doing-about-the-ICD-10-CM&highlight=ICD10

    Jackofit, I agree with much of what you have said about 'ME' and 'CFS', but I just want to pick you up on this point that you've made...

    What would you say to someone who is bed-bound or house-bound and their doctor will only give them a diagnosis of 'CFS' because the doctor does not believe that 'ME' is a real illness, or giving a diagnosis of 'ME' goes against the doctor's guidelines?

    It's not as simple as telling someone to get their diagnosis fixed.

    In the UK, we cannot get a diagnosis of 'ME' on the NHS. It's just not possible. The only diagnosis available to us on the NHS is 'CFS/ME.' (And although the UK government pays lip service to 'ME' being a neurological disorder, they actually treat 'CFS/ME' as a psychological disorder, with Wessely's/White's versions of GET and CBT.)
     
  19. Bob

    Bob

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    Thanks ISO, for all of your helpful and constructive feedback... I've found it all very helpful.
    I'm learning loads from the discussions, and I'll keep all of your comments in mind.

    I agree with your comments about needing to know all the facts if this subject is going to be dealt with properly. It's been an eye opener to me about how many facts, and how much history, I was ignorant of. But I still believe that the historical scientific facts do not necessarily have to coincide with any political or practical changes that can be advocated for. It seems that the historical scientific facts and the current political facts do not have to correlate with each other at all, in practical terms.

    Just one other point to make for now... I'm not trying to define a consensus that I can put forward on behalf of PR as a whole... I wouldn't make the assumption that I could do that... I'm just trying to see if we can all reach some sort of understanding of each other's opinions, and ideally a consensus... But I wasn't expecting to reach a consensus that could be presented as representing PR as a whole... I didn't realistically think that it would be possible to get that sort of involvement in the project or agreement from everyone on the forum.
     
  20. Angela Kennedy

    Angela Kennedy *****

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    Having extensively read the historical medical literature myself on ME, I think we have to get away from the idea that the Canadian Guidelines cannot diagnose 'ME'.

    The historical clinical descriptions of the various illnesses (including illness outbreaks of various names) associated with 'ME' are themselves diverse and sometimes unstable. This uncertainty has allowed the 'fatigue' (i.e. psychogenic explanation) peddlars into the field, so to speak. It is also unfortunate that certain doctors historically (and even recent history) were not more critical of the 'hysteria' meme and other psychogenic explanations also abounding, which were related to rank sexism of the era, but nevertheless did not help.

    As the CC HAVE been validated and peer-reviewed, and now operationalised for research by Lenny Jason, patients will not get very far demanding old, unstable, clinical descriptions are used INSTEAD of the CC. That's not to say we should be ignoring the historical literature and bringing it to scientific medical attention: far from it.
     

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