Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

Discussion in 'General ME/CFS Discussion' started by deleder2k, Dec 16, 2015.

  1. deleder2k

    deleder2k Senior Member

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    The following article can be seen as a response to What exactly is myalgic encephalomyelitis? by Saugstad et al.


    From the December issue of the Journal of the Norwegian Medical Association:

    By: V B Wyller S E Reme T E Mollnes

    PERSPECTIVES
    Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment




    Source: http://tidsskriftet.no/article/3434755/en_GB

    This has been discussed here, but at that point the article was only available in Norwegian.
     
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  2. Esther12

    Esther12 Senior Member

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  3. halcyon

    halcyon Senior Member

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    Dreadful.
     
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  4. halcyon

    halcyon Senior Member

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    Yeah, wouldn't want to accidentally replicate a known abnormality which might screw up your ability to "counter publication bias." :rolleyes:
     
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  5. halcyon

    halcyon Senior Member

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    And so then they go on to use the classification they're criticizing when it's convenient for them to do so.
     
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Talk about biased!

    Tried CBT. It didn't work.

    Most of the CBT research papers I've read were ridiculous. I can't believe the NIH funds them.

    Hoping this will change with the IOM report and new Trans-NIH ME/CFS Research Working Group.
     
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  7. halcyon

    halcyon Senior Member

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    This paper is riddled with mistakes and misused citations.

    @deleder2k are these authors well known in Norwegian ME circles or is this their first foray?
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    Why do they persist with the "patients believe mind-body dualism" nonsense. There is a difference between saying that the effects of the mind are not sufficient to cause this illness (and cognitive therapies do not lead to objective improvements) and believing in mind body dualism. Likewise, any such theories have to demonstrate directionality that is to say whether cognitions or behaviour affect the biology, or whether biology primarily affects the cognitions (an example: schizophrenia)

    It seems very strange for them to tell us we believe something different to what we actually believe. It shows us that these people have not truly listened to us, or they wouldn't make such claims.
     
    Last edited: Dec 16, 2015
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  9. Kati

    Kati Patient in training

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    Because it's convenient for a socialized health care system. It costs less money this way.
     
  10. nandixon

    nandixon Senior Member

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    Reference 43 is the 2011 rituximab study. They appear to have conveniently overlooked the most recently published rituximab trial results from July 2015:

    B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment

    which were consistent with and reinforce the findings of that earlier study.
     
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  11. digital dog

    digital dog Senior Member

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    And why do they always go on about us being perfectionists? (Christ! I can hardly spell the word!)
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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    Horrendous. Why would anyone want to publicise their ignorance like that?
     
    sorin likes this.
  13. Effi

    Effi Senior Member

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    you should try harder! stop trying so hard! see, you made yourself sick and you're keeping yourself sick as well! (they are always right, no matter what. How convenient. :whistle:)
     
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  14. digital dog

    digital dog Senior Member

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    Deleder,
    Have you written a response to this article?
    I am so sick of healthy people sprouting this garbage. What these f****** idiots don't understand is that we use CBT CONSTANTLY throughout our days just to survive.
    'It's okay, i'm fine. I can make it out of bed today. What is the worst that can happen?'
    We have CONSTANT CBT dialogue going on just to do simple things.
    If CBT was the answer to ME we would all be cured by now. We'd all be CBT practitioners for Christ's sake.
    How thick do they think we are?
    God, I'm sick of all this crap.
     
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  15. deleder2k

    deleder2k Senior Member

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    He is well known. He is a paediatric working at Norway's largest hospital. He believes in something he calls the "sustained arousal theory". People with ME are in a constant stress mode. See here: http://www.ncbi.nlm.nih.gov/pubmed/?term=wyller VB.

    Wyller is also a medical editor of the Journal of the Norwegian Medical Association. It is almost read by every doctor in the country, so this is blow for ME sufferers in Norway.
    Since the article is written in English and is also listed on PubMed, it would fantastic if anyone would write something back. Either as a comment, or a a response in a follow-up chronicle. I think anyone can reply in an comment under the article, but not sure if persons without a medical degree/or persons not representing an organisation can answer in an chronicle.
     
    Last edited: Dec 17, 2015
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  16. deleder2k

    deleder2k Senior Member

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    I've discussed the article with Silje Reme, a psychiatrist involved. I said that they hail CBT as something fantastic that could cure ME for most of us. I said to her that CBT does not lead to any improvement if one look at objective measures. No difference between groups in unemployment rates, sick leave, steps walked. She then gave me the FitNET trial. I said no difference seen at long term follow up. Then she also managed to say that the reason there was no difference in the PACE long term follow up was because all the patients that had received SMC had now received CBT. That is why there were no difference between the groups. She has no data to support that claim. Total bullshit.
     
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  17. halcyon

    halcyon Senior Member

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    I was working on a rapid response but this article is such a mess I don't know where to begin.
     
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  18. Sidereal

    Sidereal Senior Member

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    This is simply not true. There are data in the online supplement to the follow-up Lancet Psychiatry paper that contradict her position. Those in the SMC group who received CBT vs those who didn't receive CBT showed no difference in improvement rate, people (mildly) improved on self-report measures regardless of the treatment received during the follow-up.
     
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  19. Effi

    Effi Senior Member

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    that is absolutely true. good point @digital dog (Although their answer to this would be: 'oh but the CBT in your head is not the CBT we mean. The CBT we mean is the CBT only we can give you. It's a secret kind of CBT that we keep hidden because it's sacred and magical and will cure you only if you really believe in it.':moneybag::moneybag::moneybag:)
     
  20. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    I actually find a lot to commend in this model and the notion that the 'neuroinflamed' brain may be sensitised to 'false alarms' is pretty much along the lines of how I've been thinking.

    Unfortutately their partisanship with regards to CBT seems to lead them to selectively drop the 'Bio' from their BPS model -so much for cartesian dualism. Yes there is microglial activation in various 'mental' disorders which many now believe explains mood and behavioural symptoms etc and not vice-versa.

    But the bottom line is CBT hasn't worked for ME/CFS or for 'mental' conditions such as schizophrenia as our friend James Coyne well knows :

    http://blogs.plos.org/mindthebrain/...isrepresented-trial-cbt-schizophrenia-part-2/

    Ang god forbid any selective no reporting of null results for CBT and depression :

    http://www.medicalnewstoday.com/articles/300359.php
     
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