New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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MEA website poll on what to call this illness

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Dec 1, 2014.

  1. charles shepherd

    charles shepherd Senior Member

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    TAKE OUR DECEMBER SHORT SURVEY

    How would you prefer your illness to be described?

    Visit www.meassociation.org.uk and scroll down a bit to the website poll

    Overseas votes are welcome in this month's poll
     
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  2. charles shepherd

    charles shepherd Senior Member

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    VOTES SO FAR:

    The MEA Quick Survey

    • How would you prefer your illness to be described?
      • M.E. (75%, 59 Votes)

      • ME/CFS (11%, 9 Votes)

      • CFS/ME (4%, 3 Votes)

      • CFS (0%, 0 Votes)

      • PVFS (0%, 0 Votes)

      • CFIDS (0%, 0 Votes)

      • Other (6%, 5 Votes)

      • Not bothered (4%, 3 Votes)


        Total Voters: 79
    Polls Archive
     
    Valentijn likes this.
  3. Wildcat

    Wildcat

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    Which "ME"?

    Is that Myalgic Encephalomyelitis as in the WHO ICD Classification?

    Or the MEA's Myalgic Encephalopathy?
    .
     
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  4. eafw

    eafw Senior Member

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    I'm not sure if the "not bothered" option was intentionally funny, but it did make me smile.

    More seriously though, there is the old problem here in that ME and CFS are not the same illness anyway, it's not just a naming issue.
     
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  5. Esther12

    Esther12 Senior Member

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    I'd go for whichever would most irritate White: ME or ME/CFS? What do you think?

    I think it's important to try to maintain PVFS as a sub-group rather than have it be totally submerged. I might prefer that as a term personally.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    ME as in either myalgic encephalomyelitis or myalgic encephalopathy
     
  7. Valentijn

    Valentijn The Diabolic Logic

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    Definitely "ME" ... they dislike even using it in "CFS/ME" :D
     
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  8. Min

    Min Guest

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    So which one are we voting for, please could you clarify Dr Shepherd?

    I most certainly do not want my myalgic encephalomyelitis renamed 'myalgic encephalopathy' thank you very much.

    As Wildcat pointed out, myalgic encephalomyelitis has a WHO ICD Classification and myalgic encephalopathy does not.
     
    Last edited: Dec 1, 2014
  9. charles shepherd

    charles shepherd Senior Member

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    I knew you wouldn't like this latest MEA poll

    I have already explained that for the purpose of this poll ME = myalgic encephalomyelitis or (if you prefer as I do) myalgic encephalopathy

    We are not making an issue in this poll over encephalopathy vs encephalomyelitis

    We are just trying to gather some patient evidence to present to the medical establishment when we say that "patients do not like the term CFS and far prefer ME" and they turn back on us and say "what evidence do you have to say that patients do not like the term CFS"

    The names of all kinds of diseases change over time to take account of scientific evidence (or lack of scientific evidence in the case of M encephalomyelitis) and there is nothing to stop doctors (and I am not alone here in advocating encephalopathy) putting forward an alternative name for a disease

    As you probably know, my own ME started with a chickenpox encephalitis.

    However, I do not believe that my on-going illness (my symptoms do not meet criteria for CFS) involves an M encephalomyelitis whereas an M encephalopathy is consistent with symptoms, signs and invention findings.
     
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  10. charles shepherd

    charles shepherd Senior Member

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    Latest voting figures - almost 300 replies in just a few hours!


    • How would you prefer your illness to be described?
      • M.E. (80%, 234 Votes)

      • ME/CFS (10%, 29 Votes)

      • CFS/ME (3%, 8 Votes)

      • CFS (0%, 1 Votes)

      • PVFS (0%, 0 Votes)

      • CFIDS (0%, 1 Votes)

      • Other (5%, 15 Votes)

      • Not bothered (2%, 6 Votes)


        Total Voters: 294
     
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  11. Min

    Min Guest

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    Malaria means 'bad air, cancer means 'crab' - we do not see charities representing these and other illnesses deciding to confuse things by changing the name of that illness.

    How can there be scientific evidence when the psychiatric profession misappropriate all the research funds for our physical illness? We do not know whether there is inflammation of the central nervous system in myalgic encephalomyelitis because the research has simply not been done.
     
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  12. charles shepherd

    charles shepherd Senior Member

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    The UK post mortem research group (which I belong to) is trying to find out if there is any evidence of an underlying and on-going encephalomyelitis being present in the brain and spinal cord of people with ME/CFS. Although the numbers are small, and other post mortems have been carried out since this report was published, there is no evidence so far of an encephalomyelitis being present. Abstract of preliminary report below.

    NB: The presence of dorsal root ganglionitis in the post mortem specimens we have reported on here in the UK (Journal of the Neurosciences - see below) is likely to have been caused by an infection, but not necessarily a current infection, and it may be a past infection that is not relevant to ME/CFS.

    I would also point out the dorsal root ganglia lie outside the spinal cord and are anatomically part of the peripheral nervous system.


    Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
    DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
    1Addenbrooke’s Hospital Cambridge UK
    2Queen’s Hospital Romford Essex UK
    3Royal Devon & Exeter Hospitals UK
    4Honorary Medical Advisor to ME Association UK

    Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

    We report the post mortem pathology of four cases of CFS diagnosed by specialists.

    The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

    Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

    The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

    One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
    One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

    This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

    Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

    The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

    Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

    A specific CFS / ME brain and tissue bank in the UK is proposed.
     
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  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    That's reasonable and seems a good plan, thanks, and I took your poll (I voted ME).

    I do agree, though, that switching to encephalopathy is unnecessary because lots of diseases have outdated names.

    As far as I can see, disease names are changed mainly when they didn't bother to study the pathology and they think the implication of the name migh "unnecessarily scare" the patients or imply "important" pathology. Us, interstitial cystitis, GWI ... They did suggest renaming polycistic ovary syndrome for possibly a better reason.

    I do meet criteria for CFS (Fukuda) and for ME, and the low level brain inflammation that they were discussing at Stanford and IACFSME conferences makes a lot of sense to me. though I clearly also have autoimmune features but evidently this is not mutually exclusive even within the same illness.
     
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  14. charles shepherd

    charles shepherd Senior Member

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    I have no problem with linking neuroinflammation to ME/CFS - this is consistent with a number of research study findings, including our report on dorsal root ganglionitis, and the new research from Japan presented at the IACFS conference in March

    But it's important to note that neuroinflammation, or low level CNS inflammation, occurs in a number of conditions that are not classified as neurologic a,l and this is not the same as having an encephalomyelitis

    If the clinical presentation of ME/CFS was the same as that seen in patients with encephalomyelitis doctors would be more open to the possibility that this pathology is present in ME/CFS. But this is not how people with ME/CFS present in the consulting room.
     
  15. Sasha

    Sasha Fine, thank you

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  16. charles shepherd

    charles shepherd Senior Member

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    But the situation re ME is very different

    Most UK doctors are either reluctant or unwilling to use the term ME

    This is because they believe that encephalomyelitis is pathologically incorrect - so they use a term (CFS) that their patients do not like or accept

    The reason I proposed the term M encephalopathy many years ago (at the time that ME really was threatened with the big red line through it here in the UK following the Royal Colleges report) is that this term retains the name ME and describes a pathophysiological process in the central nervous system that can be supported by current research findings
     
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  17. Revel

    Revel Senior Member

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    If one more person says to me, "Chronic Fatigue Syndrome? Oh, I get that sometimes too", I may punch them (that is, if I'm having a good day and can actually raise an arm :mad:).

    I have voted 'ME' rather than 'Other', as I want the term 'CFS' to be replaced sooner rather than later. Voting 'Other' may prolong that process.

    We can argue over the definition of 'ME', or spend time choosing an 'Other' that we're all at peace with, further along the line.
     
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  18. user9876

    user9876 Senior Member

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    Have most UK doctors really that much knowledge or put that much thought into the name? I suspect they are just following a trend pushed down from White and others. If they cared about whether a name correctly characterized a disease they would listen to patients who say that CFS does not correctly reflect their experience of the disease. I tend to think we should see naming issues as a social trend in the medical community that reflects the strength of some voices and the weakness of patient voices in getting through into the community. Its the same trend that leads to doctors unquestioningly believing results quoted by PACE because they are unwilling to believe that senior academics would come out with definitions of normal and recovery that are so farcical.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Just voted for ME in the poll since it said overseas votes would be counted. It's too bad that US doctors (outside of the few specialists) have never even heard of this term!
     
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  20. Aurator

    Aurator Senior Member

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    On a personal level, I'm largely indifferent what my illness is called. I only care what it is called insofar as the official choice of name may influence the treatment patients receive and the research into it that gets approved, funded and carried out.
    If a name change to ME is adopted in the near future (here in the UK most doctors in my experience currently refer to it as CFS) will it actually lead to any appreciable improvement in the understanding and treatment of what is still a poorly understood condition, or will it merely amount to a placatory gesture to patients that neither improves their lot nor validates their illness and their suffering in others' eyes any more authoritatively than the current Babel of conflicting names? How important is it to settle on a name for an illness before it is even known what it is and what causes it? Is it uniquely important in the case of ME/CFS?
     

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