Julie Rehmeyer's 'Through the Shadowlands'
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Problematic ME/CFS research on ACT/GET in Sweden

Discussion in 'General ME/CFS Discussion' started by mango, May 14, 2015.

  1. mango

    mango Senior Member

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    There’s some very problematic and troubling psychobabble research going on here in Sweden.

    We were extremely disappointed and hugely upset to find out that the Ethical Review Board (Etikprövningsnämnden) recently approved yet another study that without doubt will cause lots of suffering for the participants :(

    …and quite possibly negative consequences for us all once it is published (publications and conferences internationally); we are all familiar with psychobabble spin by now, and we have no reason to believe this one will be any different.

    It’s the same old “bad thoughts”, “fear/avoidance behaviour”, “gradually increased activity”, “there are no risks, no negative effects”, behavioural approach.

    You can read all the details in their application here (.pdf, 9 710 kB): http://www56.zippyshare.com/v/oUe8DTVi/file.html
    Full project description is available in English, starting on page 26.

    The person in charge of this study has been at it for quite a while already, and the stories those patients tell about their experiences are exactly what one would expect…

    Although it isn’t possible to appeal the Ethical Review Board’s decisions, our patient organisation RME is already working hard on several other levels to try and stop this.

    Ideas and suggestions are welcome!
     
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  2. Helen

    Helen Senior Member

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    Too sad. I didn´t think we should have to see this again in Sweden when we among others have Profs. Jonas Blomberg and Jonas Bergquist doing biological research in ME/CFS or SEID.

    Maybe it would be a good idea to mention the person responsible for the research (group) and the name of the study here. Then the, hopefully, following discussion will come up when people google the project. I guess there are more than me that are astonished to see this these days when we have so much research going on, or to start in a near future. Research that has nothing to do with psychobabble, but focus on biological causes and connections.

    Thanks for alerting us, @mango
     
  3. mango

    mango Senior Member

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    Yes, I totally agree with you @Helen,... :mad::depressed::cry::bang-head:

    The document from EPN was scanned in as picture, not text, so one can't just copy text and paste it here. That's why I haven't shared more (too ill to copy it by typing it in). Here's the basic stuff, perhaps someone else could help add more?

    Prevalens och påverkan av psykoneuroimmunologiska faktorer vid myalgisk encefalomyelit/kroniskt trötthetssyndrom - behandlingseffekt av Acceptance & Commitment Therapy

    The prevalence and impact of psychoneuroimmunologial factors in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: treatment effects and mechanism of action of Acceptance and Commitment Therapy

    Smärtcentrum/Beteendemedicin, Karolinska Univseritetssjukhuset Solna
    Behavioral Medicine and Pain Treatment Center
    Karolinska University Hospital
    Karolinska Institutet

    Gunnar Olsson, Martin Jonsjö, Rikard Wicksell, Indre Ljungar, Linda Holmström, Anna Andreasson.
     
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  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    If this study is getting pushed through in spite of resistance, maybe an alternate strategy could be trying to force them onto a level playing field.

    Ie - calling for the study to have proper scientific methodology that makes it much harder to spin the results after the fact:

    - objective outcome measures (actimeters, specifically taking LONG TERM measurements before during and after the study, not just spot checks)
    - agreement to collect and publish complete data on harms, dropout rates and reasons for dropping out, # of patients who refuse the intervention or are rejected from the study, and why.
    - a control group of healthy sedentary patients, or patients with a different disease such as MDD
    - "recovery" defined at the outset, and at a degree of functioning that would be reasonably considered recovery in ANY disease (ie - not that someone can walk 6 steps farther than before)
    - that the study use a properly selected patient cohort, and that results can only be said to apply to patients who fit this criteria - eg - if they use Oxford and also exclude anyone with orthostatic intolerance or sleep dysfunction , they can't later claim the study applies to patients diagnosed via CCC criteria, or SEID criteria or ICC criteria which all have these as core symptoms.

    Perhaps having to make the study methodologically sound would be unappealing if the researchers have an agenda, which gives you a lot of ammunition if they can not come up to the standards of what constitutes proper study design.
    ...And if they go through with it with proper methodology, I think we can all guess what the study outcome would be...though the researchers might be in for a surprise if they are true believers in this junk ;)

    obviously the world doesn't need any more repeats of this garbage psychobabble research, but if it is going to happen maybe we can at least try to make them respect the rules of science :)
     
    Last edited: May 14, 2015
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  5. mango

    mango Senior Member

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    here's an article from Dagens Medicin (a website for healthcare professionals), published last week.

    the headline says "Patients organisation tried to stop ME research: the National Association for ME patients argues that it's risky to study what effects a CBT method have on patients with chronic fatigue syndrome."
    http://www.dagensmedicin.se/artiklar/2015/10/13/patientforening-forsokte-stoppa-forskning/

    the method in question is said to be ACT (Acceptance and Commitment Therapy), but reading the details of the application and the study protocol it's obviously not ACT but the usual CBT/GET = correcting false illness beliefs, overcoming irrational fear, gradually increased activity etc... :bang-head:

    and yes, the person responsible for the study is flat-out lying about it in this interview... trying his best to make the critics/patients look like ignorant idiots... :mad:

    a quick look at the comments section will give you a pretty good idea of what we're up against... you might recognise one of the names, reimer, from this: http://forums.phoenixrising.me/inde...hornig-and-fluge-in-a-medical-magazine.36154/
     
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  6. mango

    mango Senior Member

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    update: they have now started, in the middle of the study, to run a number of blood tests on a really big group of patients (150-200?).

    the list of tests is similar to the one stated in the application, but shorter (among the missing ones are NK-cell activity).

    big apologies for sloppy translation! it's too difficult for me, sorry...

    Immune system: inflammatory cytokines, CPR, complement, immunoglobulines.

    Infections: titres of EBV, Herpes, Parvovirus B19, CMV, Borrelia.

    HPA-axis/stress system: saliva cortisol, serum cortisol, DHEAS, aldosteron, ACTH, NPY.

    not visible in the picture below, but has been reported elsewhere: thyroid test, vitamin D, zink and iron.

    the letter below was sent to the participants earlier this week. there are instructions for how and where to do the tests, and it also says:

    "The intention is to use these laboratory test results and all the other ones we've done (medical case history, symptoms, questionnaires, tests at physiotherapist and neurophysio) to try and develop patterns of symptom clusters and data that can be used for subgroup classification, which I believe is a necessity in order for future research to be more homogeneous and more specific."

    [​IMG]

    here's the bit about tests from the english part of the application:
    [​IMG]

    here's what it says in the application about how they are planning on using the test results:

    [​IMG]
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    Last edited: Dec 6, 2015
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  8. mango

    mango Senior Member

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    yes, the 'therapy' has been going on for quite a while now.

    and yes, i totally agree - it's very strange...
     
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  9. mango

    mango Senior Member

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    The report you are linking to is about a different earlier project.

    Here's the final report on that one:
    http://www.ds.se/Global/Om sjukhuset/Organisation/Dokument/Slutrapport ME_CFS-projektet juli 2013.pdf

    And here are RME's comments on the final report:
    http://pestosilvestri.blogspot.se/2013/09/rme-kommenterar-me-rapporten.html
    http://pestosilvestri.blogspot.se/2013/09/for-nagra-veckor-sedan-kom.html
     
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  10. mango

    mango Senior Member

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  11. mango

    mango Senior Member

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  12. Effi

    Effi Senior Member

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    :eek::bang-head::nervous::oops:
     
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  13. mango

    mango Senior Member

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  14. Effi

    Effi Senior Member

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    Again with the 'ME/CFS patients are a financial burden on society'...

    Looking for psychological factors of the illness = money down the drain.

    :vomit::cautious:o_O:cry::zippit::grumpy:
     
  15. mango

    mango Senior Member

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  16. mango

    mango Senior Member

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    Here are some tweets to 'like', if you agree and want to show your support:







     
  17. mango

    mango Senior Member

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    Olsson's study was one of the posters at the IACFS/ME conference, page 114-115 in the program:

    http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx


    :mad::depressed:
     
    Last edited: Nov 1, 2016
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  18. Effi

    Effi Senior Member

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    What is that thing doing in there??? :aghhh::cautious::cautious::grumpy:
     
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  19. Denise

    Denise Senior Member

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    Valentijn, mango and Effi like this.
  20. mango

    mango Senior Member

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    Oops, I seem to have forgotten to mention the amount Olsson recently received from Neuro Sweden. It's 250 000 SEK (approx 27 900 USD, 22 790 GBP), in addition to the 53 000 SEK he got earlier this year...
     

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