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Michael Sharpe skewered by @JohntheJack on Twitter

Discussion in 'General ME/CFS news' started by Indigophoton, Apr 9, 2018.

  1. Keela Too

    Keela Too Senior Member (Voting Rights)

    Post Activity Collapse Syndrome?

    LOL we could go on and on thinking up names. I don’t think it is even possible to create a name that all patient groups would tolerate.

    I still just say I have ME and use ME/CFS only occasionally.
     
  2. Trish

    Trish Moderator Staff Member

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    I'm sorry to hear that @Cinders66. We need to be so careful not to allow honest disagreement to turn into personal attack.

    I rather like @JonathanEdwards suggestion of PEMS.

    All we can do for now is agree that we haven't found the perfect name. Some of us prefer one, some another. I tend to say ME when talking about myself, and ME/CFS on the forum to be inclusive. Perhaps I should start saying ME/CFS/SEID/PEMS
     
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    The same group that opposes IOM criteria and SEID as name also doesn't like the term PEM because malaise is too vague. They prefer postexertional neuroimmune exhaustion. Which to me sounds more like neuroimmune babble than a more specific name.
     
    Last edited: Jul 6, 2018
  4. Trish

    Trish Moderator Staff Member

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  5. Andy

    Andy Committee Member

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    Musing on this topic, I wanted to get the concepts of Delayed Onset and Post Exertion in, but that meant either DOPES or PEDOS, neither of which are useful.

    Then I started wondering (more seriously), would it not be worth thinking about it from the reduced stamina/lower energy limit angle? All of our issues essentially come from this. Though I've got to admit I haven't thought of a decent acronym for that yet.
     
    MEMarge, Simone, Skycloud and 6 others like this.
  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    That's my current, personal strategy, where I have the time to have a conversation. I should specifically point out that this isn't the policy of #MEAction, which aims to use ME in all official communications.
     
    MEMarge, Simone, ahimsa and 5 others like this.
  7. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Agreed! And I would tend to recommend CCC for that. It nets the smallest group out of the whole, which at least means we're looking at a narrower field. Still no guarantee we're looking at the right thing. But a better chance.

    One thing I've learned is that a lot of ME researchers have ME. One of my least favorite things is to be invited to a conference and asked, "are you a patient, or a professional?" ....Excuse me? Let's not do that the other way around. Professionals can be patients.

    Unfortunately, that's "pene". Anyone else here speak Spanish? :facepalm:
     
    MEMarge, Simone, alktipping and 9 others like this.
  8. allyann

    allyann Established Member (Voting Rights)

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    Whatever name is finally selected we need to have a plan to migrate people diagnosed with CFS to the new name.

    In Australia it is extremely hard to get a diagnosis of ME. I was diagnosed with CFS using the Canadian Criteria eight years ago. On every report it says CFS.

    I am getting to the point where I don't care what they call it, as long as they respect it.
     
    MEMarge, Simone, Robert 1973 and 10 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I know the WHO prefer descriptive names (as opposed to names of people) but before long there will be a multitude of similar names and identical acronyms which is going to become even more confusing.
    There is already the problem with BDS and BDD.
    I thought maybe 'Energy Deficiency Syndrome' but then that's EDS ...........

    eta: is there someones law that says eventually every ME/CFS discussion ends up talking about the name?:D
     
  10. JaimeS

    JaimeS Senior Member (Voting Rights)

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    It's in the rulebook. How can you have missed it?
     
    MEMarge, Simone, 2kidswithME and 6 others like this.
  11. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  12. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Postexertional relapse syndrome. PRS.
     
    MEMarge, Sean, Lisa108 and 1 other person like this.
  13. Andy

    Andy Committee Member

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    Stamina Impairment & Postexertional Relapse Syndrome (SIPRS)?
     
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Has same acronym as persistent refusal syndrome which might be a problem.
     
  15. TiredSam

    TiredSam Committee Member

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    There is now - Sly Saint's Law
     
    MEMarge, Simone, 2kidswithME and 13 others like this.
  16. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I know that this is a common worry in the community. However, speaking for myself, I would have no desire to move on and leave people to rot. I couldn't forget my experiences and what I have learned.

    If there was a cure, then that would just leave me with more capacity to cause trouble on behalf of the forgotten others. I doubt I would be the only one.

    If the situations were reversed, would you walk away and leave other's to rot? I doubt it :)
     
    MEMarge, Simone, Lidia and 22 others like this.
  17. Graham

    Graham Senior Member (Voting Rights)

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    At the moment I am bathing in bleach each night in the hope that the Lightening Process will cure me. If it does, I promise to remain a pain in the neck for all the PACE fans.

    Perhaps we should create a new, more inclusive category to replace MUS, within which variants like ME can continue to hold on to their existing name. I suggest EMITS – eternal medical indifference to suffering.
     
    Last edited by a moderator: Jul 6, 2018
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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The wording in the abstract might be a bit unclear but the figure is actually 99%:
    Though if it was based on a random population sample, I imagine the figure would be less.
     
    Last edited: Jul 7, 2018
  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Ah, I was thinking of the "90% with both cognitive/emotional and physical exertion" bit. You're right; all of them, or nearly, had something recognizable as PEM.

    This may be a reflection of the number of ppl w/Fukuda who also qualify for IOM or CCC; but it may be a reflection of the fact that they were all diagnosed by clinicians with expertise in ME. In other words, people who know what ME/CFS "looks like", so we're already selecting for patients with a disease where PEM is a feature.

    [Edit -- I'll fix that in the original post, it's important.]

    [Edit the second -- yeah, it's likely how they were recruited. Another study says it's 0.19 % meet Fukuda, and 0.11% meet CCC; so more than half of Fukuda folk meet CCC. That's from Nacul, 2011.]
     
    Last edited: Jul 6, 2018
  20. alex3619

    alex3619 Senior Member (Voting Rights)

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    Ditto.
     

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