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Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Andy, Jun 18, 2018.

  1. Sisyphus

    Sisyphus Senior Member (Voting Rights)

    Messages:
    458
    People are an odd bunch. Once in a while you find a thief with more honor than the average joe, especially when most of society as a bad lot. But usually not.

    Alt med means absolutely anything that you want to package and sell as medicine, which may occasionally include actual medicine.

    We are in an odd spot, as for quite some time, the powers that be declared that we don’t exist. Ramsey discovered something important, poltiticizers picked up brooms to sweep it away as that was their only real talent.
    Over the last half century there’s been a slow creeping bureaucratization, cronyfication, and politicization of many areas of society. Those are not improvements.

    Sorry, this is disjointed. I seem to of lost whatever minimal ability in writing that I previously had.
     
  2. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    414
    Location:
    Tasmania
    It's rather like the way that Homeopathy gained a following because it didn't do as much harm as much of conventional medicine did in the 19th century.
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,277
    Location:
    UK West Midlands
    there are things I do that fall squarely into complementary medicine I don't object to it in principle I think the wording about practitioners being competent ethical and caring is unnecessarily positive. It is good that the message around harms is clearly articulated and up front on that page. It should be equally up front on the CBT/GET page.
     
    Esther12 likes this.
  4. sea

    sea Senior Member (Voting Rights)

    Messages:
    476
    Location:
    NSW, Australia
    If it’s anything like ME/CFS in Australia there are a multitude of patients with the diagnosis who probably better fit a chronic fatigue state. These people are enamoured with stress and depression as a cause and exercise and mindfulness as a cure-all. I regularly join and then leave the Australian ME/CFS group on Facebook when I can’t endure it any more.
     
    Inara, TiredSam, NelliePledge and 3 others like this.
  5. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Messages:
    622
    Oh God, I can imagine....painful!!
     
  6. TiredSam

    TiredSam Committee Member

    Messages:
    10,496
    Location:
    Germany
    Yes, it appeals to the type A personality. And we all know how many of them have ME.

    What part of AfME's expertise (if we accept that they have any, for the sake of argument) allows them to make a statement like that? Have they done a customer satisfaction survey? Have they checked whether those who speak well of complementary therapists over-report and exaggerate what they think helped and neglect to mention everything that didn't? It's just an unfounded opinion plucked from thin air. And even if it's true, what use is it to me that the therapist is a lovely person who's very good at what they do (swinging chrystals, channeling 'energy', sticking candles in my ear ...) if what they are doing is wasting my limited time and money?

    Action for M.E. adopts an uncritical approach to complementary therapies and regards this as a service to their members.

    Well on that basis if thousands of people with M.E. report that GET ruins the health of some a lot of people would you mind adopting an open-minded approach to that and start warning all sufferers (including 'mild') that it could seriously harm them?
     
    Hutan, Inara, Lisa108 and 7 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,584
    Location:
    UK
    Has the Countess of Mar been shown any of this, and the leaflets (ie on pacing, and the employers guide, and 'toolkit for professionals' etc)?
     
    Amw66 and Trish like this.

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