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Form letter to NHS England re:ME, MUS and Functional Somatic Syndrome

Discussion in 'Advocacy Projects' started by AndyPR, Apr 26, 2017.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    Borrowed this info from the ME Research UK Facebook page - link to post https://www.facebook.com/MEResearchUK/posts/1524760864235832
     
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  2. Yogi

    Yogi Senior Member

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    I haven't kept in touch with all this JCPMH stuff but this is a good letter from 25%MEG. It may be worthwhile for 25% Group to circulate this via MEAction so everyone in England is aware and can write in.

    I don't think they willl remove the document as requested in the last part and I am not sure if that is reasonable ask. However the reference to ME/CFS should certainly be removed and correction circulated.
     
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  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    They should add about the UK blood and tissue ban from CFS, PVFS ME sufferers.

    If patients with less severe presentations are brainwashed by CBT to 'feel better' they can then donate at a blood donor centre and claim they now 'feel better', and go ahead and donate. :eek:

    If the UK state really thought CBT/GET was the way, they would not enforce restriction on blood tissue umbilical cord ban.

    Every single advocacy group needs to challenge people on this, ideally on TV or 'You Toob'.
     
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  4. Countrygirl

    Countrygirl ME is not MUS

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    I think this information needs to be checked as I don't think it is current.

    I was recently in a hospital when a close relative died and a nurse asked me to sanction organ donation. I was given a list of diseases that would prevent the patient from being a tissue donor and ME was not listed. I have since checked and I believe that the ban has been lifted. It certainly wasn't included on the list that the hospital gave to me.
     
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  5. Countrygirl

    Countrygirl ME is not MUS

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    This letter is very timely!

    Here is an article that is dated May 2017 that is in the Lancet:

    It is headed, 'Low dose imipramine for functional somatic syndromes'

    The introduction to the article informs the reader that CFS is one such example of a FSS.

    The rest of the article is behind a paywall.

    It would be useful if someone could access it for us.

    This needs to be challenged as it is misleading the whole of the UK's medical profession.
     
  6. AndyPR

    AndyPR Cookies for Tired Sam

    My copy of the letter is going off today :)
     
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  7. AndyPR

    AndyPR Cookies for Tired Sam

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  8. Cinders66

    Cinders66 Senior Member

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    The recent Lipkin gut bacteria paper had a paragraph referring to CFS and FM as a functional somatic syndrome.
     
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  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Mr Lipkin works for the US Government and his colleague of 25+ papers they've done together, Ms Hornig, is trained as a Psychiatrist.

    Together, they appear to be going down the path of converting the potential science of inflammatory ME into a neuropsychiatric illness called ME/CFS (via weak CFS entry criteria), which by chance, would make the UK MRC very happy as converting ME into a mood disorder exonerates Wessely and Crawley and PACE, and lastly UNUM and everyone else.

    Note also that PACE apologists AFME, invited American Lipkin to speak at their UK conference.
     
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  10. AndyPR

    AndyPR Cookies for Tired Sam

    Interesting. Your evidence for this is?
     
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  11. Yogi

    Yogi Senior Member

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    where?
     
  12. AndyPR

    AndyPR Cookies for Tired Sam

    In the discussion section of the paper, https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y#Sec10
     
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  13. Yogi

    Yogi Senior Member

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    mango and Countrygirl like this.
  14. Countrygirl

    Countrygirl ME is not MUS

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    Big, big red flag.

    Your friends aren't always who you think they are.
     
    mango likes this.
  15. AndyPR

    AndyPR Cookies for Tired Sam

    Lol, not a chance. I no more believe that Lipkin and Hornig have a grand scheme to try to prove ME as psychological than I believe that Wessely is going to hold his hands up and admit that he was wrong along, ME is purely biological, and write a personal cheque to all those who have been harmed.

    Look at the quote. It's in a paragraph discussing causality, and is one of three possibilities they suggest. Look at the definition of functional somatic syndromes;
    Now we are used to seeing it used by psychs as an official sounding way to say "it's all in your head" but CII will be using it as it's defined "physical symptoms that are poorly explained". That, like it or not, is where we are with ME and why we need research.

    Is it, from a patients point of view, a poor choice of a term. Yes, absolutely, and CII have been somewhat naive in using it, but if their goal was to push a psych agenda then they wouldn't have limited themselves to such a small section of the paper to do it in such a poor way, and they wouldn't be relying on crowdfunding to get their research projects running. But ultimately, if you want to blame anyone, blame the BPS psychs for hijacking what was previously a scientifically neutral term.
     
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  16. Cinders66

    Cinders66 Senior Member

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    Can someone explain what the symptom overlap is with IBS and CFS. Yes some with CFS have IBS , some with CFS also have migraines, some also have pain, some flu symptoms like auto immune illness, some also have neuropathy etc etc. Why this big connection right back from Wessely with CFS and IBS as symptom overlap, as in the 2 are almost interchangeable, when they're so different in my view. It says IBS have a higher fatigue score (none of the healthies I know who have IBS have fatigue) but I guess we aren't talking cant work or socialise fatigue so is it comparable to or really relevant to CFS? I don't understand why the 2 are lumped connected under MUS.
     

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