Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Simon Lawrence responds to AfME

Discussion in 'General ME/CFS Discussion' started by Min, Dec 17, 2014.

  1. Min

    Min Guest

    In their recent Interaction magazine, on page 6 on their report on the Symposium, the charity Action for ME stated that "there is no advocacy for the severely affected in the UK".

    Simon Lawrence, who set up and runs the 25% Group for the severely affected in the UK has responded to them:

    ukxmrv, Sean, biophile and 5 others like this.
  2. Sleepyblondie


    I was surprised to read this in my InterAction, too. 25% ME Group have been wonderful advocates for severe ME sufferers. I highly recommend them to anyone with severe ME, or anyone with a keen interest in severe ME.
    Min likes this.
  3. Dr Speedy

    Dr Speedy

    we do NOT want AFME representing severe ME or their advocacy remember they said 7% of people who are bedridden can work, shameful !!
    promoting NLP 4 severe ME disgraceful !!
    biophile, RustyJ and Wildcat like this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Perhaps leading CFS charities description of severe ME is similar to the PACE trials authors interpretation of 'recovered'? I have no idea. Certainly 'severe' could mean someone with faulty illness beliefs who is bed ridden with depression leading to 'avoidance'. They too are severely affected by 'ME', if ME means to includes those patients who have CFS along the lines of BPS theory types. Sadly, it does.

    We now know, comprehensively, Oxford Criteria CFS, is as far removed from Ramsay ME as possible, yet CBT still fails even for generic unexplained fatigue as demonstrated by the apparently tampered with PACE trial results! Ergo CBT shouldn't even be mentioned by any CFS or ME charity as a treatment, it simply doesn't work and if coupled with GE, can be dangerous.

    So I can see why Simon Lawrence is a little miffed. He is very ill and almost on his own runs his little charity
    with no media exposure or government funding, unlike AFME and others. Is this because the 25% group are staunchly against CBT/GE?

    Where are the website pages on AFME's website not featuring someone who is recovered or significantly improved! Where are the articles on bedridden people with destroyed lives? Where are the housebound people who've been stuck with a permanent flu like condition since they were teens when first diagnosed and are now 40, 50 and divorced, mentally ill and ruined?

    If you have a diagnosis of CFS or ME, there isn't a single proven treatment on offer, and the patients are too ill to work, or look after themselves. The patients are thus forced to be poor. Poor people cannot afford to take legal action against their abusers. Additionally, legal aid (granted to others who apply) will not be granted by the state, to sue the state, to set a precedent they must not neglect PWME. So patients are trapped for life, unrepresented and misrepresented.

    The situation for the severely affected is an unmitigated disaster globally, especially in the UK. Why is practically no one other than the 25% group and InvestinME letting this be known? It dumbfounds me.

    The 25% group aren't scared of featuring it's members or having an obituary on display of deceased members. Sad, but reality for people with severe ME. They die, and die too young.

    We want AFME, ME assoc to feature patients or their families caring for them who have been:

    Neglected for decades not weeks or months. People utterly rejected by the system.
    Misdiagnosed who had potentially fatal conditions or did in fact go on to die. (e.g. cancer).
    Had their children stolen from them under accusation they were making the child sick.
    Been mistreated by doctors in hospitals for failing to recover with CBT.

    The above 'happenings' to PWME are not uncommon, but these experiences of severely affected patients are strangely absent in main stream CFS charities advocacy episodes, who apparently can or have received government grants for supporting CBT. Is this connected?

    A complete change is required, a turn around. An official acceptance wrong was done, an apology given, and to move forward with equality and progressive thinking in mind. (E.g. accepting subsets, accepting patients are at risk, vulnerable people, often with little secondary education as they were too ill to complete education).

    With access to healthcare in the community the severely affected ME CFS patients won't need a charity, and will be self sufficient by actually being granted access to doctors and nurses who can help them by monitoring their long term condition and helping when necessary. Not much to ask is it? :love:
    jimells, Keela Too, Min and 3 others like this.
  5. Min

    Min Guest

    Action for ME have quite incredibly stated that 8% of those with severe ME are in WORK!

    The main speakers at their severe ME symposium advocate Neuro Linguistic Programmming for the severely affected.

    Based on this, my opinion is that we would probably be much better off if AfME continued to ignore us.
    RustyJ, jimells and Wildcat like this.
  6. Sidereal

    Sidereal Senior Member

    I am glad that the mainstream charities are not drawing more attention to the severely affected because it's better to be forgotten/neglected by the state than tortured. If the problem of severe ME were more widely recognised, all it would lead to is more GET. It's not as though there are any effective treatments for severe ME so I don't see what's there to be gained from seeing your GP or some consultant. It's bad enough that mildly affected ambulatory patients are receiving abuse from the medical system because they are still able to interact with doctors. Severely affected ME patients are far too fragile to handle this and such stress could push them into death. When I had severe ME my worst fear was that I would be sectioned and have state-sanctioned torture (i.e. GET/"rehabilitation") imposed on me.
    RustyJ, Valentijn, ukxmrv and 2 others like this.
  7. Min

    Min Guest

    Action for M E have responded to Simon Lawrence, but with no apology or acknowledgement that the statement they sent to all their associate members was incorrect:

    The comparison between the two charity's budgets is strange. I believe the 25% group's total annual budget to be about half of AfME's CEO's salary.
    Last edited: Dec 18, 2014
    Valentijn, Wildcat and jimells like this.
  8. jimells

    jimells Senior Member

    northern Maine
    Boooo! Boooo! :mad:
    Wildcat likes this.

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