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Petition, change.org: Define "Melvin Ramsay's Myalgic Encephalomyelitis (M.E.)" as own distinct disease from CFS

Discussion in 'Petitions' started by John Mac, Apr 10, 2019.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Peter Trewhitt and ScottTriGuy like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Far far too many words. I try to be open minded and not picky about petition words being exactly what I would say but as I couldn’t even manage to finish reading it I’m not going to consider signing. Surely the Ramsay advocates can do a better job than this at making their communications accessible to People with ME. Bizarre.
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    Did Ramsay ever say that ME was caused by enteroviruses and only by enteroviruses? And would it only be people with confirmed enterovirus infection who could be deemed to have ME? This looks more like Hyde's version of ME than Ramsay's.
     
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  4. strategist

    strategist Senior Member (Voting Rights)

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    The petition references this page as describing a recent ME outbreak in Spain: https://wwwnc.cdc.gov/eid/article/25/1/18-1089_article

    It says

    I then went to see how well the illness experienced by these patients matched with what is generally known about ME.

    It sounds like these patients were seriously ill but improved fairly rapidly, except for 2 which had significant sequelae. Few details are given but it doesn't mention that these patients continued to have a chronic relapsing illness with marked fatiguability which is how Ramsay ME could be summarized. This doesn't really support the petition in my opinion, mainly due to lack of detail.
     
    Last edited: Apr 10, 2019
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  5. Londinium

    Londinium Senior Member (Voting Rights)

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    I politely won't be signing that. IMHO, there is no proof that 'ME is not CFS', other that the tautological approach of saying there is some kind of 'true ME' and defining CFS as 'people diagnosed with ME/CFS who don't have ME'.

    If we (rightly) criticise the scientific approach, methods and definitions used by those with a biopsychosocial theory for ME/CFS, we should hold ourselves to the same standard.

    (I'll add that if you wanted to portray ME/CFS patients as slightly unhinged with an axe to grind... well, you wouldn't go far wrong with that petition. As so often in this space, it's well-meaning but an own goal)
     
    Last edited: Apr 10, 2019
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  6. Andy

    Andy Committee Member & Outreach

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    This explains my position far more eloquently than I could. :)
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Not sure I agree with the central point, and there's some quackery in there. It feels a bit mean to say this about another patients work, but this is the sort of petition we could do without imo.
     
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  8. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    Perfectly put.
     
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  9. inox

    inox Senior Member (Voting Rights)

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    I'm sorry, even if I did agree with the main point, there is just to much other stuff not related to disease descriptions to sign this. It feels more like a blog with several posts than a petition?
     
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  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Ditto.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree. We have debated all this at length. I have learned that Ramsay's wisdom lay in understanding an illness that has no specific connection to encephalomyelitis or enteroviruses.

    I think this petition hinders the effort to get a clear view of ME. And sadly it fuels the claims of people like Wessely that patients have irrational beliefs. Those irrational beliefs tend to come from physicians with pet theories, and yes physicians probably have more crazy beliefs than patients, but it does not help to pick up on these beliefs when they don't add up.
     
  12. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    the guy who put this together has been quite active on social media recently. he's sort of jumped in, all guns blazing - can post about mold, brain injury, ME, enteroviruses within a few minutes of each other. without being disrespective, he's getting a bit carried away. we could do without this.

    i mean regardless of the motive and content of the petition, the fact it makes no proper reference to disease classification etc. and is simply addressed to NICE officials tells you all you need to know.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I've read some of the comments of people who signed.
    I really doubt they have read all the stuff the petitioner has posted and are largely signing because they don't like the fact that ME gets 'clubbed in' with 'chronic fatigue'; unfortunately that is not what the petition is about (as far as I can tell but I haven't read it all and don't intend to).
     
  14. Trish

    Trish Moderator Staff Member

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    None of it is really relevant to NICE anyway, from my cursory read through, as their remit is about diagnosis, treatment and care, not all the stuff about whether it's enteroviruses etc.

    Since there is no established biomarker to separate subgroups, and no effective treatment, we are left with clarifying what we mean by PEM, and making sure it is included in the diagnostic criteria, removing GET and CBT, and warning about the potential harm of trying to exercise yourself better, and ensuring patients get the respect, symptomatic treatment and decent care they need.

    I share the petitioner's concern about the harm the name CFS has caused, but the rest of the very lengthy document is completely inappropriate for a petition, and very unhelpful. I'm definitely not signing it.
     
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  15. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I’m giving this a miss for the reasons already stated.
     
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  16. TiredSam

    TiredSam Moderator Staff Member

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    In the ME world bickering about labels has always turned divisive and acrimonious very quickly, which is something we could really do without.
     
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