The 12th Invest in ME Conference, Part 1
Over the Hills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

Discussion in 'General ME/CFS News' started by Cheshire, Mar 18, 2017.

  1. keenly

    keenly Senior Member

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    Who really runs the NHS? Do they benefit from real treatments?
    If the medical establishment push the phony narrative that ME/CFS is all in the head, who benefits?
    I think we have to be very positive, but also be aware of more sinister goings on. Ice Cube said it best.
     

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  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Wait just a little while. Things are happening, but the people involved need space to get things right. It looks as if Julie and David may indeed have got the snowball on its way - no mean achievement.
     
    Marky90, Yogi, rosa and 44 others like this.
  3. Cheshire

    Cheshire Senior Member

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    Is it a general observation or are there tangible things going on behind the scenes that you can't talk about yet?
     
  4. Keela Too

    Keela Too Sally Burch

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    Excellent.

    I'm starting to feel a change in the whole mood around ME. I'm seriously hoping it is not just wishful thinking on my part, but I think there are now so many groups making waves about the situation that a storm is starting to break. Here in NI we are doing our little bit too.
     
  5. BurnA

    BurnA Senior Member

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    I think you have to read between the lines :)
     
  6. Jan

    Jan Senior Member

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    To quote @charles shepherd on MEA fb

    Charles Shepherd There are also a number of critical commentaries on the PACE trial being prepared for publication in a leading UK medical journal. I cannot say any more at this point but this UK coverage will add to the pressure on Psychological Medicine to carry out an independent analysis of the data in the recovery paper that they published. Dr Charles Shepherd - Hon Medical Adviser, MEA
     
    Cohen2, mango, rosa and 21 others like this.
  7. deleder2k

    deleder2k Senior Member

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    Does anyone have a scan of the article?
     
    Ritto likes this.
  8. alisonorr

    alisonorr

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  9. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It was not a general observation.
     
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  10. Barry53

    Barry53 Senior Member

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    I have referred to it as a dog pile along the way :p.
     
  11. Barry53

    Barry53 Senior Member

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    Oh how I love a good mystery! :D
     
  12. Barry53

    Barry53 Senior Member

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    No, I do not think it is wishful thinking. There are times you can stand in the open air and just sense from the stirring breeze and the scudding clouds that a storm is coming. Well I really do sense there is a storm coming, that the PACE trial pirates will struggle to find safe harbour from. It is not just the fact things are happening, but the ever-increasing pace that things are happening. Exponential growth (the snowball effect as I am sure most people here know anyway) starts agonisingly slowly and can seem for ages like nothing is ever going to change. And even as the rate of change slowly ramps up it can still seem terribly slow. But as the rate steadily and relentlessly increases, it gives a good clue that something is on the way. I really believe we are at the knee of the curve.
     
  13. TiredSam

    TiredSam The wise nematode hibernates

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    And I love a good logical puzzle. I've just run it through the following algorithm:

    if (!generalObservation) {
    tangibleThingsGoingOnBehindTheScenesThatYouCantTalkAboutYet = true;
    } else {
    tangibleThingsGoingOnBehindTheScenesThatYouCantTalkAboutYet = false;
    }

    and I think I've got the answer.
     
  14. JamBob

    JamBob Senior Member

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    I'm feeling hopeful too. I used to view the BPS crew as nasty tyrants but lately I have come to view them as the underdogs in this situation. I genuinely feel sorry for them because they've built their careers and reputations on a sham. Their house of cards is about to come tumbling down.
     
    Keela Too likes this.
  15. Barry53

    Barry53 Senior Member

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    Like so many things, it is the bad extremists within any ideology that screw it up for the rest. I am not at odds at all with the idea of mind and body being in harmony, and that in some ways our minds can influence our physical health. I do not really know much about BPS but I would not be surprised if its original concepts might have some sense in them, but much abused by others later? The idiots (powerfully influential idiots unfortunately) who insist that everything and anything physical they can possibly shoehorn into their self-serving dogma has to be mental in origin. But of course that does mean that if there really are any decent proponents out there of a more rational form of BPS (is there one?), then now is the time they really need to stand up for honesty and truth, and decide which way they want history to judge them.
     
    Keela Too likes this.
  16. A.B.

    A.B. Senior Member

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    Form your own opinion
    https://en.wikipedia.org/wiki/Biopsychosocial_model

    The idea that disease outcome is the result of the interplay between biological, psychological and social factors is nice, but attempts to affect disease outcome by working the psychological and social factors never really seems to work out. I think investing resources according to a biomedical view is a better use of them.

    Historically, the BPS model seems to mostly have been a way for psychiatrists trained in psychoanalysis to justify their existence after psychoanalysis had been discredited.

    Then the insurance industry realized it could be used to explain away chronic conditions whose biological basis is poorly understood.
     
    Last edited: Mar 21, 2017
    Laelia, Jan, Snow Leopard and 6 others like this.
  17. Barry53

    Barry53 Senior Member

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    Oh yes, I wholeheartedly agree with that.
     
  18. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    A PACE opera?
     
  19. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Please forgive my ignorance if this has already been discussed elsewhere, or if it is just not feasible, but could patients who have been harmed by GET make a complaint via the Human Rights Act?

    I realise this wouldn't be easy, and probably pointless anyway, but even just lodging a complaint against the medical practices that are implementing GET, might make some waves. Especially if more than one person did it.

    I don't know anything about the complaint options in the UK, or if you need to hire a lawyer before you can complain.

    I guess it may be too early for such an approach anyway, and it may be better to wait until more evidence from current research is gathered.
     
    Barry53 and Jan like this.
  20. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?

    Sorry if that's overly nasty or poorly expressed.
     

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