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Denmark: Newspaper Politiken on PACE and the Cochrane review - David Tovey interviewed.

Discussion in 'General ME/CFS News' started by Kalliope, Mar 14, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Den syge på Fanø: Skal de kronisk trætte træne?
    google translation: The patient at Fanø: Should the chronically tired exercise?

    Please look beyond the dreadful title, as the article itself is rather good. Contains interview with David Tovey and the director of the National Board of Health Søren Bostrøm who still defends the PACE trial by calling it "the greatest and best evidence base for graded exercise and cognitive behavioural therapy".

    Patients with the mystical disorder chronic fatigue syndrome, myalgic encephalomyelitis (ME) - eg. Marie Louise Gustavussen from Fanø, whom Politiken has mentioned - gets better at graduated, individually adapted training.

    It established the golden standard in the medical world, a so-called Cochrane review, in both 2015 and 2017. The Cochrane review reviewed the 8 key scientific studies with a total of 1,518 patients with chronic fatigue syndrome to look at the effects of custom training and conclude:
    "Graduated training has a positive effect on people's daily physical functioning, sleep and overall self-rated health".
    .....

    But now, the scientific basis for exercise therapy has been questioned by years of massive criticism from especially patient groups.
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ""In fact, I think the fierce criticism of the studies, especially the Pace study, has almost made them stronger because the authors have explained and defended the criticism really well. They have never said that the studies are perfect or that no reservations can be made. And it is part of the academic environment to stand up to its peers and relate to criticism. It strengthens science in the area, ”says Søren Brostrøm.

    hmm
     
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  3. inox

    inox Senior Member (Voting Rights)

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    Tovey really weakend Brostrøms statements.

    Brostrøms strawman was obvious? No-one claimed bedrest cures ME, Tovey clearly made the point we don't have data for negative effects of GET.
     
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Brostrøm's comment about the Cochrane review being replaced being routine and normal also indicates a degree of unease that has made him make a statement he and everyone knows is wrong. There was nothing routine about the request for withdrawal. Or giving the topic to a different group of people.

    Misrepresentation to the popular press of this sort ought probably to be a disciplinary matter.
     
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  5. large donner

    large donner Senior Member (Voting Rights)

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    I have google translated this back into English:

    They dont work but they are the beast we have got and they are well documented. Yes we lack science.
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The defensiveness continues to show.
    I can understand the worry if your department employs lots of people who may find themselves redundant, but those who got themselves into this situation have only themselves to blame.
     
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  7. large donner

    large donner Senior Member (Voting Rights)

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    At least if they become redundant they will be fulfilling the full potential of their brains.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    That's a very weak defense by Tovey.

    The only remaining argument is literally: well, it got published and it's not retracted yet. That's it. That's all there is to defend: it's there and we won't budge because our reputation will be hurt if we do. It's entirely about protecting reputation, with reckless disregard for how it applies in the real world.

    I'm not sure of the translation but those "key studies" for the Cochrane review included: 1 very controversial trial with loads of flaws that are still unaddressed, 1 very controversial trial with loads of flaws and a null result in the conclusion itself, while the rest is a bunch of trials with loads of flaws and so tiny they should never even have made it into a review.

    As a clinical tool, it's basically a paperclip held together with spit and cat hair. The substance of the review is entirely hollow, it's defended only by the most superficial aspect of having been successfully been pushed over the finish line after having so obviously been carried 99% of the way.
     
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  9. Peter

    Peter Senior Member (Voting Rights)

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    Same old, same old, but an opportunity to try to make some sense in the mess. Much to long here, but got engaged.

    The standing of the minister and Sunhedsstyrelsen/Brostrøm is of no surprise. Hopefully Brostrøms somewhat categoric statements, more than anything is a result of the natural slowness of science and Cochrane. The nearly holy standing of Cochrane is reassuring if you get it right or just about right, but what when it goes all wrong? Needless to say, very scary when the studies/basis leading up to the conclusion are of poor quality, messing up diagnostics, inclusion and all sorts of measurements. I sincerely wonder how Brostrøm would articulate himself if he took a long hard look at the sources? Isn't it a kind of paradox that the less firsthand knowledge you have of something, the more cathegoric are the statements?

    At least Tovey addresses the real problem, the what if..That is exactly the point - that whatever we should call it - GET, training, extensive moving of body, what if it could impact negatively? There are evidence to this. Patients surveys, exercise-tests etc. It is to date unfortunately not evidence of the greatest of quality, but it should be more than enough to be very cautious. Probably because of very little knowledge, Brostrøm don’t seem to be open to the what if..But the idea that movement could impact negatively to anything at all, is of course another holy truth that never can be questioned.

    When it comes to articles and discussions like this, I think it is necessary to state the very obvious: even ME-patients understand that total inactivity is bad for you. The majority of patients have experienced and enjoyed moving prior to disease and know all the benefits of this. They will at every possible chance try to move some, because they know that’s good in general, but the problem is of course that they tolerate extremely little. So they have to balance and manage this in a very delicate way by pacing. These strategies are not just taken out of nowhere, they are based upon extensive rounds of trying and failing! Important to stress this since the narrative of the BPS-folks seems to be that patients don’t know their own best and that they oppose the idea of moving at all.

    I guess the professor Brostrøm mention, is wrongly cited or taken out of context. Nobody will speak up for total inactivity and sound and noise deprivation on a general basis. But unfortunately we know that there are the so-called very severely ill, my definition here the totally bedridden 24/7. I have no idea how to approach these patients, but I know that you can’t exercise/train them better. But what to do?

    For the majority of patients, who are not constantly bedbound, I would assume that there is a substantial difference being able to move just a little within house, sometimes outside and not at all. One could only speculate on the impact on physiology contra the none at all-movers, but it obviously to prefer just for keeping some basic functions running. Patients understand that. Patients will try their very best to move within limits. But its a real catch-22, because it will almost all the time be done to much and make ME-symptoms worse. The «prize» on the other hand, is that it may have a slight positive impact on other things, the more "silent" things of health. But the consequences all together as an ME-patient are really bad, when you in reality loose almost everything, to a great extent even the chance to influence on other health issues that may come along. The only thing ME is good for, is probably for strengthen of mental resilience and facing all kind of future health challenges.
     
  10. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Exactly.

    Apparently the idea that the precautionary principle could apply to exercise studies has completely eluded Søren Brostrøm and the rest of the Danish Health Authority.
     
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  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Mystical disorder :rofl: :rofl:

    No doubt Fink is as we speak adopting that for his latest twist on a psych name for our illness.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I thought someone had said it is now called Finktional Disorder
     
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Thanks JE that was a belly laugh :thumbup:
     
  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Trying to understand exactly what was said via google translate has hurt my mind. Anyone got a sense of what this implies for Cochrane? I'm still expecting bad things.
     
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  15. benji

    benji Established Member (Voting Rights)

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    I am suspecting this piece came to try influence opinions in Denmark, before the vote in the parliament. Luckily they’ve already lost. ME is out of the functional disorders :thumbsup:
     
  16. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    My rough interpretation / translation

    David Tovey states that the Cochrane leadership in a highly unusual move, publicly stated that it intended to retract the GET review. It ended up deciding against the unheard of decision, because a new review was being conducted.

    According to Tovey the authors are preparing a changed version of the review that addresses criticism from 2018.

    In a written comment to the evidence used by the recommendations of the Danish Sundhedsstyrelse, Tovey also states that it is clear that there is uncertainty regarding the effect of GET in a number of important measurements.

    He points out that the studies in question need data for negative effects on exercise. The risk that physical exercise might be harmful in ME/CFS, is the crucial point in the debate.

    In the end of the article. We can read that David Tovey, informs the newspaper that Cochrane har decided to move the responsibility for the review away from Cochranes psychiatry group and most likely will move it to the group of Cochrane authors who look at chronic illnesses.

    To be honest I am having a hard time making sense of the interview myself.
     
    Last edited: Mar 15, 2019
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  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks for that. For some reason I really had difficulty taking it in.

    That doesn't sound hopeful to me.

    "The risk that physical exercise might be harmful in ME/CFS, is the crucial point in the debate."

    I don't think that this is right - at least, not 'harm' in the limited medical sense.
     
  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Haven't read the article yet, but am reminded of the answer Tovey gave to Caroline Struthers:

    https://healthycontrolblog.wordpress.com/
     
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  19. Seven

    Seven Senior Member (Voting Rights)

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    Wait this is new? I don't think they had anounced the department.
    David Tovey, editor-in-chief of The Cochrane Library, reports to Politiken that they have chosen to shift responsibility for the review from the Cochrane Psychiatry Group and probably to the author group looking at chronic disorders.
     
  20. andypants

    andypants Senior Member (Voting Rights)

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    As far as I know this is the first mention of where they might put us, yes. Other people are usually far better informed than me, though!
     
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