The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

Discussion in 'General ME/CFS News' started by Sasha, May 30, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Outstanding! They've produced a report with some strong recommendations for NICE.

    http://www.meassociation.org.uk/2015/05/23959/

    Well done, MEA - can't happen fast enough.

    Thank you, @charles shepherd!
     
  2. eafw

    eafw Senior Member

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    About time.
     
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  3. Bob

    Bob

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    Nice strong wording and a robust intelligent message coming from the ME Association there. And an interesting looking, nuanced report. It gets my thumbs-up, and thanks. Haven't read the full report yet.
     
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  4. Cheshire

    Cheshire Senior Member

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    I like their subtittle "No decisions about me without me".

    It's just the opposite of the whole psychobabble crap, where we're not considered to be able to have any insight into our own health, where our own salvation can only be achieved by following the advices of the knowledgeable "therapist" who's the one that can save us from our deluded self. And they call the whole prosses "empowerement of the patient"... Blahhh

    "No decisions about me without me", that's real empowerement!
     
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  5. aimossy

    aimossy Senior Member

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    Almost 1500 participants this is a strong survey! Great work.
     
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  6. A.B.

    A.B. Senior Member

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    A like isn't enough. I love this post.
     
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  7. chipmunk1

    chipmunk1 Senior Member

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    they dont believe this anyway. just a lot of talk to make patients feel understood so they can unload their freudian horse manure on them.
     
    Last edited: May 30, 2015
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  8. snowathlete

    snowathlete

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    Haven't read the report yet. But potentially very good.
     
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  9. eafw

    eafw Senior Member

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    They've taken it directly from the NHS (*) who have been using this slogan for years, and yet not delivering on it at all. Window dressing basically, as they continue to ignore and denigrate us (and many others with chronic health problems and disabilities too). So I read it in the MEA report as giving a nod to the irony of that.


    (*) ETA, more precisely from the coalition reforms for the NHS, so even worse really
     
    Last edited: May 30, 2015
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Good
    but I want to see those bastards prosecuted for fraud, false imprisonment, grievous bodily harm and negligent homicide.
    fat chance, but all proof of the rotten sick corrupt system we have.
     
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  11. eafw

    eafw Senior Member

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    On page 6 (of 294)

    "We recognise that it is impossible for all treatments for a disease to be free from side-effects, but
    if GET was a licensed medication we believe the number of people reporting significant adverse
    effects would lead to a review of its use by regulatory authorities"


    Let's hope the MEA keep hammering at this, and that other pressure groups can join with them in ripping up the whole PACE/NICE/GET horror show that's been inflicted on us for so long
     
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  12. eafw

    eafw Senior Member

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    page 84

    "The evidence of this report coupled with the evidence of previous patient surveys ... lead us to the conclusion that there must be a change in the position held by NICE where patient evidence is almost completely ignored and the evidence from RCTs is relied on seemingly without question"
     
  13. eafw

    eafw Senior Member

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    and

    page 90

    "Our data indicates that a substantial percentage of health professionals do not understand the illness and we found it disturbing that the position was not much different when the therapists were believed to have an ME/CFS specialism"


    It's a long report, lots of patient testimony (which I skimmed) and a few nice graphs, but above extracts by the authors hopefully give an idea of the general gist of it for people.
     
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  14. Sasha

    Sasha Fine, thank you

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    No holds barred...

    I like it!
     
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  15. JaimeS

    JaimeS Senior Member

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    PLEASE let this bring about change! I'm all for speaking one's mind, but - I literally feel like the ME sufferers of the UK need to take this group of psychobabblers to court and present their side. Why hasn't a patient group been formed to sue their a$$es off?

    Maybe that's a more good ol' US of A idea, or maybe the people who have been most wronged are now bedbound and unable to strategize. I just don't know how anyone can get away with this kind of wrongheaded nonsense for so long. (How long did electroshock therapy last again?)

    I'll be talking about study selection bias in my next vid for my students...

    -J
     
  16. duncan

    duncan Senior Member

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    Electroshock therapy continues, just under a different name - at least it does in the United States.
     
  17. JaimeS

    JaimeS Senior Member

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    @duncan -

    A friend of a friend got it for her severe bipolar disorder. It lost her several hours' worth of memory every time, but made her feel 'normal' for two weeks.

    Still, she got that recommendation after she'd tried everything there was to try, giving a passel of medications a fair shake, including lithium. She didn't come in with bipolar and the doc went, "well, what do you think about electrocution?"

    I had tiny jolts sent into my hip as part of a PT regimen. While it was agonizing for five or ten minutes, the effect on my long-term pain, range of movement, etc was a godsend. When I was at Mayo and they were attempting to test my nerve transmission, they gave me shocks I couldn't tolerate...

    ...but my neck pain/congested feeling/stiffness disappeared. For someone with ME it was amazing. I thought, "could I tolerate this once a week?" The answer was NO, but I felt wistful.

    They even still use leeches on infected and rotting tissue sometimes.

    Many old-fashioned therapies are still useful in certain applications... but it's all about how eagerly and indiscriminately they're used. Every generation of physicians and pharmacists thinks poorly of the generation before, but people weren't stupider in the past. They found something that worked in some situations and leapt about their practice, sprinkling a bit of it wherever they went, regardless of circumstance. They're still doing so now, just with different treatments. I'm not sure I know anyone who hasn't been offered an SSRI at some point in their lives, for example. I'm including everyone I know who's ever talked to me about their doctors' visits in that statement, not just ME patients.

    [Edit - let's cap the electroshock therapy discussion here, guys, that's not what this thread is about.]

    -J
     
    Last edited: May 30, 2015
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  18. mango

    mango Senior Member

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    They still use it here in Sweden too... A friend of mine who has ME (moderate, at the time) was subjected to it when the anti-depressants didn't cure her... :( :depressed:
     
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  19. JaimeS

    JaimeS Senior Member

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    What.

    WHAT.

    That's enough to make you crazy in and of itself. I'm not sure I could have handled being given electroshock against my will, never mind the reason being that no one would believe I was 'really' sick. That's like something out of a Twilight Zone episode!

    MAYBE IF THE ANTI-DEPRESSANTS DON'T WORK, LOW SEROTONIN or DOPAMINE IS NOT THE PROBLEM. Y/Y? :bang-head: :bang-head:

    Ugh. I wish people didn't long so desperately to be 'right' and feel useful that their thought patterns became crystallized and immovable. The reason any doctor would feel justified in doing this is the firmly held belief that ME is a belief system, despite no credible evidence to support the claim.

    -J
     
  20. duncan

    duncan Senior Member

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    Parts of medicine are dark and savage and brutal and desperate. They are indulged because they work sometimes. The cost may be too high, I fear.
     
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