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Article: Ch, Ch, Ch, Changes...Myalgic-encephalomyelitis Now and Then: 75 Years of ME

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 14, 2011.

  1. Ember

    Ember Senior Member

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    Lost me. Explain. Find a reference to support your statement if possible.

    To my mind, this quotation contradicts your statement: Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
     
  2. Cort

    Cort Phoenix Rising Founder

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    I don't think the ICC replaces CFS either. I look at it as a way to weed a certain group of patients out of the CFS category. Ironically they will continue to meet CFS - and the feds,etc. will continue to view them as CFS patients - however its more accurate to portray them as ME patients.

    If the ICC authors have their way there will be ME patients and CFS patients - the CFS patients will not meet the PENE and other requirements but will meet the Fukuda criteria for CFS.

    The new ME category should also bring in some people who don't meet the Fukuda criteria.
     
  3. Ember

    Ember Senior Member

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    Do you foresee groups advocating for ME and CFS?
     
  4. Firestormm

    Firestormm Guest

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    Hi Ember,

    I was arguing against the opinion being expressed by some that all this amounts to is a name change. I am assuming that view is based on the following comment from the release of the criteria in the Journal of Internal Medicine:

    'The label chronic fatigue syndrome (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term myalgic encephalomyelitis(ME) because it indicates an underlying pathophysiology.'

    Personally, I don't think (hope I showed) that this can possibly be simply a name change. One of my points has been that without some sort of test how can patients now diagnosed with CFS in the USA be considered to have ME? And how in practical terms will these criteria be applied (in the absencse of tests) to justify the name Myalgic Encephalomyelitis?

    Even PENE requires - surely - a test? And is PENE known to be a sign of brain/spinal cord inflammation?

    Recently in the UK there has been mention of perhaps adding a more specific criteria to the existing guidelines in respect of Post Exertional Malaise. If this were to happen - where would it leave the ICCME?

    Further concerns in general to the ICCME were raised by Dr Deckoff-Jones. Sometimes you have to think beyond the hopes raised by something, and look at how it will be received and/or applied in practice: http://treatingxmrv.blogspot.com/2011/07/consensus.html

    As I have said on other threads about this criteria on this forum as well as elsewhere, I 'like' some aspects of this criteria and I certainly feel I 'qualify' for this diagnosis - BUT - I am a patient and should not be self-diagnosing, and neither for that matter do I think these criteria as they stand are sufficient to justify the name or support the claim for a distinct disease let alone different diagnosis.
     
  5. alex3619

    alex3619 Senior Member

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    Hi Firestormm, my best guess is that comments on the ICC ME definition are all premature. I think it is only round one. Round two is the treatment guide that is planned for release soon (does anyone have a date?)

    The thing with PENE is it has been measurable for 8 years now, especially the last five years. That is why they are emphasizing it. Wait to hear more. Please note how many of the authors are doing post exercise physiology research.

    Bye
    Alex
     
  6. Sasha

    Sasha Fine, thank you

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    Hi alex - that would be great to have a consensus treatment guide - but is there any reason to expect one? Have any of the ICC participants mentioned such a project? I really hope so!
     
  7. alex3619

    alex3619 Senior Member

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    Hi sasha, the guide is in the final stages from the IACFSME. It has been mentioned many times. It was officially announced at SOK by Klimas. Cort recently had a thread on them looking for the cover art. Bye, Alex
     
  8. Sasha

    Sasha Fine, thank you

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    Oh, fantastic! I don't know how I missed that. I was just ranting on another thread about how fed up I am of us all having to be our own doctors (I'm very ill-equipped for that!). It would be amazing to have something to take to my GP.
     
  9. Sasha

    Sasha Fine, thank you

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    I see that at the upcoming IACFSME conference in September there's a session (second but last right at the end of this page of the professional agenda) on "IACFS/ME Clinical Practice Guidelines: A New Primer". Maybe they are launching it then?
     
  10. Ember

    Ember Senior Member

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    I think this is the ICC statement you're looking for, Sasha:

    "It is important to note that the current emphasis must primarily remain a clinical assessment, with selection of research subjects coming later. For this reason the panel is developing Physicians Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge."

    (The "IACFS/ME Clinical Practice Guidelines: A New Primer" comes from another source.)
     
  11. Sasha

    Sasha Fine, thank you

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    Thanks, Ember - I wonder if that's two sets of guidelines coming up, then? With so few knowledgable specialists I hope it might be just the one project!
     
  12. Jill McLaughlin

    Jill McLaughlin *****

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  13. Cort

    Cort Phoenix Rising Founder

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    Good points. I think in order for this definition to be successful they'll have to start comparing the two groups in a number of ways. It would be REALLY interesting to see, for instance, how ME (ICC) patients compared with Fukuda patients with regards to NK cell functioning or herpesvirus titers or blood volume or SPECT scan results. I don;t think you can say what lab tests will be different but the new definition provides the possibility of building up ME as a physiological, testable entity. There are differences between this definition and Hyde's but Hydes findings might be a good place to start.
     
  14. Michael Dessin

    Michael Dessin Senior Member

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    I think Fukuda patients can be ME patients...patients within various CFS definitions can be ME patients..The disease ME has stages and can have different symptoms and appear very different with different biomarkers throughout progression
     
  15. Jill McLaughlin

    Jill McLaughlin *****

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    If Fukuda patients can be ME patients, then they should be diagnosed with ME,
    not CFS. The disease ME will not be properly recognized or treated as CFS.
    We know this from the past 20+ years experience. ME is not a fatigue syndrome.
     
  16. rlc

    rlc Senior Member

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    Hi, looking forward to seeing what the treatment guides and other information that theyre bring out are, Im really hoping that sometime soon we will see a list of other diseases that have similar or the same symptoms that need to be ruled out before an ME diagnosis is given.

    As someone pointed out there are other diseases such as Parkinsons that dont have a diagnostic test, in one sense thats true, but with a disease like Parkinsons there are a lot of other diseases that can be tested for that have to be ruled out before the diagnosis is given, they can be found here http://emedicine.medscape.com/article/1831191-differential So its only by eliminating all the other diseases that a Parkinsons diagnosis is certain.
    If the ICC can come up with a complete list of diseases to eliminate, then in the absence of a agreed upon diagnostic test for ME at the moment, ruling out these other diseases will give certainty that the patient has ME because there arent any other options left.

    Guess well just have to wait and see!

    All the best
     
  17. Firestormm

    Firestormm Guest

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    Morning Jill,

    When Myalgic Encephalomyelitis was a distinct entity (or rather recognised as such) is was considered a rare disease I believe. Indeed Prof Wessely (no less) refers to is as such in his Spectator article.

    In 2003 a publication was produced in the UK that has become the accepted prevalence data for what is now known as CFS/ME. That data were established in 1999 and suggested a prevalence of 0.3-0.5% for 'Myalgic Encephalomyelitis' which in fact makes it a 'common' neurological condition.

    I cannot find a previous statistic supporting the claim that Myalgic Encephalomyelitis was indeed at one time thought to be a 'rare' condition. Would you have any knowledge of such a study?

    The publication produced in 2003 was 'Neuro Numbers' by the Neurological Alliance and Association for British Neurologists. Myalgic Encephalomyelitis WAS featured as a neurological disease. The source for the data was:

    'Dowsett E G, Richardson J The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK 1919-1999 Evidence submitted to the
    All Party Parliamentary Group of MPs on ME 23.11.99'

    'Neuro Numbers' can be downloaded from the Neurological Alliance's website: http://www.neural.org.uk/publications-and-resources

    This publication was used, for example, in the 2005-2010 National Service Framework for Long Term Neurological Conditions i.e. UK Government legislation - still in existence and very much valid and ongoing - I should know.

    My point is that at one time it seems that Myalgic Encephalomyelitis WAS believed a RARE Neurological condition but at some point it became a common one. The reasons for that might seem obvious e.g. the effective 'combining' of CFS with ME and/or the relaxation of the diagnostic criteria perhaps.

    The prevalence data above equated in 2003 to an estimated 250,000 patients in the UK. A prevalence statistic not dissimilar to the one used in the USA for CFS and one that is still used to this day in the UK for CFS/ME.

    Prof Wessely said:

    'The patients had symptoms that might have had a neurological explanation muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). I cant understand why they think its an encephalomyelitis, one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: Dear Simon, please see this patient. There is nothing wrong with her.

    27 August 2011: http://www.spectator.co.uk/essays/all/7190703/mind-the-gap.thtml

    I wonder if, in this instance, you might agree with that neurologist? Because there is - I think - an argument for doing so but only if I can discover what the prevalence date were thought to be prior to 1999 perhaps.
     
  18. Firestormm

    Firestormm Guest

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    It would be interesting to see how ICCME - without testing - compares to a cohort of patients diagnosed with Fukuda. A similar exercise if you like to that carried out by Lenny Jason recently when he did the same with CCC.

    Or how about comparing ICCME with CCC? Now that would be even more interesting I think.

    If such a study would be possible with the ICCME as they stand now. Will have to see what the next development on that front is and whether it adds some flesh to the bare bones of the criteria I guess.
     

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