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Suggested new name for ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Sparrow, Apr 3, 2014.

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What do you think about the option of calling our illness Hennessy's Disease instead of ME/CFS?

  1. I couldn't accept that and would fight to get the name changed again.

    8 vote(s)
    32.0%
  2. I would be disappointed with the name, but probably wouldn't fight against it.

    6 vote(s)
    24.0%
  3. I wouldn't care much whether the name changed to that or not.

    2 vote(s)
    8.0%
  4. I would be comfortable supporting that name if it was chosen.

    2 vote(s)
    8.0%
  5. I would be pleased to have our illness named that so that we could move on to other issues.

    7 vote(s)
    28.0%
Multiple votes are allowed.
  1. Purple

    Purple Bundle of purpliness

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    "myel" also refers to spinal cord, not just to myelin - http://medical-dictionary.thefreedictionary.com/myel-
     
    alex3619, SOC and Kati like this.
  2. Purple

    Purple Bundle of purpliness

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    "Myalgic" means muscle pain. Pain is subjective - therefore not observable in primary care.
     
  3. N.A.Wright

    N.A.Wright Guest

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    Standard primary care physical examine includes palpation - may not be a quantification of pain but it is usually enough evidence for a sympathetic primary care doc to want to subsequently review or to refer for specialist assessment. Palpation can identify characteristics in the muscle - oedema, sponginess etc, so myalgia is one of the most accessible signs for ME/CFS in a primary care exam. Whether one would want it in the illness name is another question, but I'm not sure I can recall anyone writing on the forums (or any of the other patients I've met) saying that for them muscle pain isn't a feature of the illness.

    For fibromyalgia there's something called the tender point test (palpation by another name), though I'm unclear how widely this is accepted as a valid examination tool.
     
  4. N.A.Wright

    N.A.Wright Guest

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    If the IOM is to consider it then the evidence needs to be published, peer reviewed and probably replicated. The Osaka City University study is promising but even that need not require actual inflamation of the brain, merely that the usual products of inflammation be present and caused by some as yet unexplained disease process. There's also the possibility that this small Japanese study has revealed something specific to a localised gene variant and replication needs to be done in diverse populations to address that along with the usual prcesses of replication.

    Encephalopathy is a far easier characteristic to argue for, and tactically if the intent is to refocus away from 'fatigue' then something that has recognised implications for organic disease is a very useful option to consider. Certainly concern about 'association' with organicly mediated mental illhealth shouldn't be a concern - a brain disease is a brain disease whether Schizophrenia, Parkinson's or potentially ME/CFS (or what ever we want to call it).
     
    Firestormm, NK17 and Nielk like this.
  5. SOC

    SOC Senior Member

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    Agreed, if we're talking about the IOM changing the name. There is currently not enough published evidence even for encephalitis. If we're looking at published data for them to use, they're more likely to go with something general about the immune system than anything encephalo-.

    I'm not expecting an official name change from IOM for just that reason -- there's not enough published evidence about etiology for them to be comfortable doing anything official. Maybe. You never know with these groups.
     
  6. N.A.Wright

    N.A.Wright Guest

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    The immediate issue is whether/how patients respond to the IOM's question about preference. It may be that a consensus on a logic based choice might have some long term influence, even if the IOM doesn't recommend change under the current state of knowledge. A final report saying - "patients want definition X because ........... " might bear fruit further down the line.
     
    alex3619 and SOC like this.
  7. Forbin

    Forbin Forbin

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    It seems like the main objection to "Myalgic Encephalomyelitis" is that the "encephalomyelitis" is not what doctors and researchers traditionally think of as "encephalomyelitis." It would appear to be a more subtle, chronic and difficult to detect form of "encephalomyelitis." Speaking at the conclusion of the recent conference, Dr. Komaroff said:
    So I began thinking about a word which would mean a "non-traditional," less "full blown" form of encephalomyelitis. I came up with:
    Myalgic Paraencephalomyelitis

    [which could be abbreviated MP, MpE or MPE or could continue to be abbreviate ME.]

    The Greek word "Para" means "close to" or "adjacent to" or "a version of" or "not quite, but similar." It shows up in a lot of words like "parallel," "paraphrase," "paramedic," and even "parathyroid". [It unfortunately also shows up in "paranoid" where it seems to literally mean something like "not quite one's self," but obviously this association isn't made with other words beginning with "para." My parathyroid glands do not have irrational suspicions.:))

    [The "para" prefix is not the same as the "pseudo" prefix, which means "false."]

    I think this, or something like it, could help to get past the nomenclature objections of the traditionalists while still conveying that there is type of brain and spinal cord inflammation going on.


    Just another idea....
     
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  8. alex3619

    alex3619 Senior Member

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    According to my research it took 108 years. This was discovered in the nineteenth century, in Germany, published, then ignored until Barry Marshall, a hero of mine, rediscovered it and demonstrated it in a way the medical world could no longer ignore - though it was patients, not doctors, who forced the change. People like us.

    http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-one.1229/
    http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-two.1230/

    I am now making parallels with CPET. A primary piece of ME pathophysiology has been measurable for 65 years, but I bet most doctors think there are no tests, even now seven years after the CPET findings were published. This is a reason for advocacy rage, and I am working on a blog called Reason for Rage.
     
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  9. alex3619

    alex3619 Senior Member

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    Some pain is measurable. We have the technology now. They just don't use it.
     
    NK17, rosie26, Valentijn and 2 others like this.
  10. WillowJ

    WillowJ Senior Member

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    doesn't the periphereal neuropathy many of us have count as myelitis?

    Regardless of whether ME is acceptable as far as accuracy, I agree with @Purple that other names are retained for historical reasons regardless of accuracy, so "we don't think it's accurate" is a lame excuse.

    ME or Epidemic Neuromyasthenia or any of the other historical names should be used for now, particularly ME because it is coded in ICD.

    ME/CFS is ok as a bridge (most of us are presently diagnosed with CFS), but CFS should cease use alone.
     
    NK17, Nielk, Cheesus and 2 others like this.

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