Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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IOM report release date 10 Feb 2015

Discussion in 'Upcoming ME/CFS Events' started by Denise, Jan 9, 2015.

  1. beaker

    beaker ME/cfs 1986

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    Rich Carson tweeted on 2/4/15 : "Coming from the top: "the name 'chronic fatigue syndrome' is about to change, and it's not going to be myalgic encephalomyelitis".

    Curious.

    I'm actually nervous about this whole report.
     
    usedtobeperkytina, Kati, NK17 and 3 others like this.
  2. Sidereal

    Sidereal Senior Member

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    I suppose we should brace ourselves for something even more defamatory than chronic fatigue syndrome.
     
  3. Wally

    Wally Senior Member

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    If this tweet is correct, I am sure any unilateral decision by the "top" on a new name for this illness will generate quite a bit of heated discourse in the patient community.

    I wonder if we will be treated to some type of creative tools to assist us in "adapting" to a new name? So many possibilities await us for a new name.

     
    rosie26, Kati, Wildcat and 3 others like this.
  4. Valentijn

    Valentijn Senior Member

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    They really shafted GWS patients when they "renamed" that one, and I expect the same for us.
     
  5. Bob

    Bob

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    Chronic malingerers' disorder? :eek: (If we have low expectations then we won't be disappointed.) :confused:
     
    Last edited: Feb 6, 2015
  6. Valentijn

    Valentijn Senior Member

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    Naaah, it should be something with a better acronym. We want our money's worth, after all!

    Chronic Reciting of Absolutely Zany Symptoms?
    Freudian Angst Kindled by Emotion?
     
    ukxmrv, Scarecrow, lycaena and 6 others like this.
  7. beaker

    beaker ME/cfs 1986

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    Having this plague has forced me to have a better sense of humor. And I had a pretty darned good one to start !
     
  8. Wally

    Wally Senior Member

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    O.K. I was not going to do this, but I see that there may be a need for some additional humor on why names and abbreviations for names must be selected very carefully or we could end up with a name that leaves us open to shenanigans and ridicule.

    This video clip (titled "Dirty Names") includes some off-color humor, so please do not watch if you are uncomfortable with comedy couched in sexual reference or innuendo or you are under the age of 13.

     
    Scarecrow and beaker like this.
  9. NK17

    NK17 Senior Member

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    This wait is killing ME. After so many years of living with this life stealing disease and now they'll take it away from ME?!?!
     
  10. Valentijn

    Valentijn Senior Member

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    Well, if it's a crap name, we'll call them a bunch of useless psychobabbling morons and ignore them. It worked fairly well when GWS was morphed into "chronic multisymptom illness" (only treatable by antidepressants and CBT) by the IOM - some government agencies backed off from using it when there was quite an uproar.

    However, that lovely name is now all over the Wikipedia article, and 20,000 Google search results. But at least GWS and GWI hits still vastly outnumber CMI, with 358,000 and 185,000 Google results, respectively.

    So I expect the IOM to produce a stupid name which minimizes ME/CFS even further, and I expect them to spread it widely for a bit. And then we'll have a fit, tell them where to shove it, and carry on with privately funding ME/CFS research which uses proper definitions ourselves because the NIH is not fit for purpose.

    The stupid name will disappear, and became a footnote of minor interest in historical accounts. So yeah, basically a big waste of money playing a nasty game which won't accomplish anything for them in the long run.
     
    Last edited: Feb 7, 2015
    Cheshire likes this.
  11. Nielk

    Nielk

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    UnfortunAtely, it is not so simple. HHS is still the biggest founder of research and we depend on them for it.

    I don't think that we could ever raise a hundred million dollars a year in private funding. This is what is needed for large scale studies which are needed.

    I wish this was not the case and that we can just ignore the HHS and their abuse.
     
    Anne, Valentijn, catly and 1 other person like this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    If I was cynical about this I'd place all of my (non-existent) discretionary income on a term like 'chronic ideopathic multi system disorder'. If I was really cynical I'd add somatoform after the multi system but it can't be that bad. While emotionally they might like to go there, politically they have enough savvy to pull back from that precipice.
     
    ukxmrv, Bob, Cheshire and 3 others like this.
  13. Roy S

    Roy S former DC ME/CFS lobbyist

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    If that rumor is true I'm betting on chronic multi-symptom illness.

    However, might I suggest "chronic resistance against psychobabble"?

    Acronyms are important. :)
     
    rosie26, Ritto, Bob and 9 others like this.
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    :lol:
     
  15. Wally

    Wally Senior Member

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    @Roy S,

    Well if that is the name of the illness, I would suggest the name of the treatment will be "symptomatic hallucination illness treatment". :smug:

    Wally :rofl:
     
    Bob, Roy S, beaker and 4 others like this.
  16. lnester7

    lnester7 Seven

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    Most be the brain fog: Is there a link to the webcast? is there any web on feb 10th????
     
  17. mango

    mango Senior Member

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    re: somatoform -- "functional" is another one of those code words that i would be seriously unhappy to see...
     
  18. caledonia

    caledonia

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    I was wondering this myself. How would you rectify two reports covering the same issue that didn't agree with each other? Which one would hold more weight and supersede the other? What a mess that would be...
     
    Nielk likes this.
  19. Denise

    Denise Senior Member

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    Go to this page
    https://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

    Scroll down to Upcoming Meetings for the Activity
    and there is a link for Webcast.
    That link should go live on Tuesday the 10th for the release.

    Upcoming Meetings for this Activity
    Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    February 10, 2015 (11:00 AM Eastern)

    Open Meeting

    Agenda Register Webcast

    EDIT: to clarify - the words "Agenda", " Register" and "Webcast" each lead to different links.
    One does not need to register for the webcast.
     
    Last edited: Feb 6, 2015
    Anne and lnester7 like this.
  20. lnester7

    lnester7 Seven

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    I get this:
    Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
    This survey is not accepting additional responses at this time. Thank You!
     

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