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A general thread on the PACE trial!

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 7, 2017.

  1. Andy

    Andy Committee Member & Outreach

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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Some interesting discussion in the thread making the point that it's not the psychological nature of the assumptions that we object to, but the fact that they are merely assumptions and completely wrong at that.

    I think the point got across and he seems to understand it, but it shows how pervasive the framing of the BPS gang, that it's the psychological nature that is rejected, not the fact that it's plainly wrong.
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    I wonder whether he has heard the corollary, that rejection of the psychiatric label constitutes stigmatisation of other psychiatric patients.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    wessely-me-fake-illness-6.jpg

    I don't think Wessely has ever used the term PEM before. He always dismissed it as deconditioning, normal symptoms of physical activity interpreted with catastrophe.

    This is Soviet politburo-level of gaslighting.
     
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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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  6. JemPD

    JemPD Senior Member (Voting Rights)

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    Just as an aside, PEM being different after cognitive & physical exertion is not the case across the board.... For me PEM after too much cognitive effort is identical to that experienced after too much physical activity. The crash is identical after laying in bed reading for too long as it is from standing/walking/moving too much, & as it is after too much sensory input. It all always involves the same physical & cognitive difficulties. I could never make the heart rate monitoring method of pacing work for me because of that.

    I feel sure that this has been discussed on the forum before & i remember not being the only one to have this experience of the PEM being the same after both, but it was a long time ago so I dont remember anything else.
     
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  7. Keela Too

    Keela Too Senior Member (Voting Rights)

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    For me PEM is PEM, and can come from either cognitive or physical exertion

    Sure, I might have greater muscle aches after physical exertion, and perhaps a headache after cognitive exertion, but the rest of the nasty stuff is very similar either way.
     
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  8. Woolie

    Woolie Committee member

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    I see Garner still holds the belief that good "rehabilitation" is what's needed. That leads to the trap of thinking there is some ideal way of navigating the path to recovery.

    He's in the early days, and I'm sure that he hopes there is such a way, and such a path. But those sorts of assumptions are part of the problem.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Indeed, and they seem so ingrained in recent medical culture.
     
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  10. strategist

    strategist Senior Member (Voting Rights)

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    It's understandable that people want to see a path forward that leads to recovery.

    The attention is focused towards recovery, and very little attention is given to asking the question of how realistic it is to try and achieve recovery from an illness that we have essentially no understanding of, or whether approaches like rehab programs could do more more harm than good.
     
  11. strategist

    strategist Senior Member (Voting Rights)

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    GET seems to be at least in part the result of people's inability to accept reality. People feeling the need to pretend there is a path to recovery to avoid feeling bad.
     
  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    And of course part of the problem for people who don't recover is that some people do recover. But there is still no way to know who is going to be in what category.

    That would require someone somewhere to do the science necessary to find out. And sometime before we all drown in an ocean of virtual psychology research paper.
     
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  13. Mithriel

    Mithriel Senior Member (Voting Rights)

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    It is not acceptable to say "Oh cancer, I had that once" dismissively to someone who has not recovered or to use the fact some people are cured to tell people who don't that they must want to be ill.

    So why should it be different for us?
     
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  14. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    This worries me as I see Long Covid patients not truly learning the lessons from CFS, ME, PVS and PVFS and taking 5 -10 years before it finally dawns on them.
     
    Last edited: Sep 29, 2020
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  15. alktipping

    alktipping Senior Member (Voting Rights)

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    it took me ten years to finally except that living with this disease was my new reality of course that had a lot to do with the useless medical advice in the nineties
     
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  16. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Absolutely. It seems even worse as hyper-aggressive BS is going to hit them from a dozen different angles all at once. I don't envy people trying to make sense of things in that situation. I can't see how it will work out well unless Important People are able and willing to take the lessons on board. (Of if everybody spontaneously recovers.)
     
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    I can understand why all these people are talking in terms of recovery and rehabilitation because why would they think any different. None of them who were previously healthy including the GPs have any specialist understanding about what it’s like to have a long term post viral illness.

    Think back, how long did it take you to have any sort of basic understanding about being chronically ill and prognosis.

    For me it was a year after diagnosis that I began to understand how serious ME could be. I had met some people on line who had ME for more than ten years I saw Unrest and the situation of Whitney and the Jessica and the others with very/severe ME was made visible. Then between 18 months and two years I had read the purple book and the information there about prognosis began to sink in and I saw an ME specialist who said there was very low likelihood of me making any sort of substantial recovery and confirmed I had had ME for years before diagnosis.

    there is so much to take on board, just coping day to day, being held accountable by family and employers, there is uncertainty for each of the long covid people. It’s not surprising if they feel they are somehow unique that message about it being a completely new virus is very strong.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Exactly. The idea that if you get a bug that doesn't actually kill you, and you would not then fully recover from it, is way beyond what a normal healthy person can countenance or properly understand. If you go down with it ... then you understand. If a loved one goes down with it ... then you might gain some insights, if you are prepared to try.
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was re-reading the PACE PI's statement about PACE on talkhealth: https://www.talkhealthpartnership.com/forum/viewtopic.php?f=451&t=4800#p13962

    They talk about their recovery results: "found that both CBT and GET were about three times more likely to lead to recovery than the other two treatments."

    Then go on to say:

    This seems like more tricksy language by them, as the changes to the recovery criteria were not in the statistical analysis plan and the minutes from their oversight committees don't provide any indication that they gained approval for the recovery criteria used in their 2013 papger.
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    This ...

    "and was completed before any outcome data were examined"
    ... carries little weight in an open label trial, where the treatments entail therapist/patient interactions and observations. The investigators and therapists will have a very good idea which way the wind is blowing as the trial progresses, long before any outcome data is formally available.
     
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