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Research in progress: A Unified Mechanism for Functional Neurological Symptoms, 2015 to 2018, Edwards et al

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Feb 20, 2018.

  1. Andy

    Andy Committee Member

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    My brain fogged brain isn't sure whether this should be in Biomed Research or here in Psychosocial, happy for it to be moved if better minds than mine decide it should be.
    http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1
     
    adambeyoncelowe, fossil, Joh and 10 others like this.
  2. Cheshire

    Cheshire Senior Member (Voting Rights)

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    Keep it there...
     
  3. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    What I was unable to discern from the write-up was the methods they will employ to examine these 'sickness response' mechanisms in the brain (assuming they find them). I read all the blurb but there didn't seem to be anything relating to recruitment, assessment, testing, etc. But after the PACE Trial debate and press stuff, my brain is mush.

    N.b. Thanks Andy for finding those details. I'd forgotten all about this study and didn't realise it ends this year.
     
  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Well if CFS was just chronic fatigue....

    I'm not going to say the study will find nothing useful or is bad but I'm not convinced the researchers get ME at least, but they don't need to do they CFS can become fatigue and ME systemic disease can be ignored. The brain may be key though so at least Its sonething and PEM is part of the study.

    However, It's just ridiculous that's the uk minister in parliament in all seriousness referred to this single piece of state funded fatigue research as her attempt to reassure the sick, suffering, wailing, abandoned ME community that uk was taking biological CFS research seriously, along with MRC and NIH welcoming research proposals which dont happen . contrast americas effort
     
  5. Sean

    Sean Senior Member (Voting Rights)

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  6. Londinium

    Londinium Senior Member (Voting Rights)

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    Oh dear, I thought I'd look at where this is coming from and have fallen down the FND rabbit hole. The write up relating to CFS which states...

    ...would seem to indicate that the study will be looking at inflammation or neuroimmune factors*. But the PI seems to mainly be interested in using imaging to look at conversion disorders and seems to be lumping ME/CFS in with that. I might be wrong, but this would appear to be a study that will be looking at which bits of the brain light up more in patients suffering from 'false illness beliefs'. I can't see otherwise why one would view the cause of ME/CFS and NEAD as being related. For 'neurobiologic' read 'biopsychosocial' - and if this is the study the government is trumpeting as reflecting a change in the UK's attitude to ME/CFS then I'm more than a little underwhelmed.
     
  7. Nancy Blackett

    Nancy Blackett Established Member (Voting Rights)

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    The Sussex CFS service is involved in this study, which is warmly welcomed by the unaccountable BPS supporting Sussex and kent cfs Society. Sussex and Brighton medical school is involved via Dr Neil Harrison.


    Edit. Here the chairman of the Sussex cfs society writes that his charity is "assisting" with research by the sussex and brighton medical school. Charity supporter Martine McCutcheon says we can recover and patron actress Jenny Seagrove welcomes research on brain plasticity.
    https://www.gscene.com/news/sussex-m-e-society-marks-30th-anniversary/



    I cant bear to read that nonsense.
     
    Last edited: Feb 20, 2018
  8. Trish

    Trish Moderator Staff Member

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    Just one little problem there: There are no treatments that make people get better, so they are chasing a chimera.

    'Successful treatment'? Lead me to it...

    Looks like horrible BPS stuff to me. No proper definition of ME, just fatigue, and no mention of how they will measure successful treatment.
     
  9. Valentijn

    Valentijn Not a moderator

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    Basically another central sensitization theory - definitely psychosocial. And combined with an apparent determination to keep using Oxford criteria while the researchers happily rot in their remote little cave, cut off from the rest of society :rolleyes:

    No, it isn't characterized by fatigue:
    Even if two factors were ruled out, it wouldn't prove a faulty sickness behavior is to blame:
    It's not even a fault with the brain, but with the attention of the brain which supposedly creates epileptic and CFS symptoms:
    It sounds like they're only doing brain scans, and not checking for inflammation or infection:
    This is pretty bizarre in general, since they're purporting to discover the mechanism by which "treatment" cures psychosomatic disorders, while lacking evidence that treatment is a cure at all, or that psychosomatic disorders even exist :confused:

    Yeah right :rofl::
    Ah yes, it's the presumed insanity causing the symptoms, not the known disease:
     
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    How on earth did this get funded?

    Would they not need to show that they have a proposed treatment model to enable them to show the proposed effect? In the absence of such a workable model what can they show?
     
  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Perhaps they will dismantle a VO2 max machine and put patients on a treadmill to induce the sickness behaviors, whilst shouting at them and using a cattle prod.

    Can just imagine them commandeering the treadmill and throwing that stupid tubey thing attached to a box in the bin.

    Do we know how much this is costing and who exactly funded it?
     
  12. chrisb

    chrisb Senior Member (Voting Rights)

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    This is what St Georges website has to say:

    Professor Mark Edwards is a neurologist who studies how the brain controls movement and how abnormalities of movement occur in people with neurological illness

    He leads the Motor Control and Movement Disorder Group which is comprised of neurologists, psychiatrists, physiotherapists and basic scientists. As a group they use psychophysical and neurophysiological techniques to study motor control and how it is disrupted in common movement disorders such as Parkinson’s disease, dystonia, functional movement disorders, and Tourette’s syndrome
    .

    It is unclear how these interests relate to ME. It looks like £661,000 to look at something outwith one's area of claimed expertise.
     
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I have a feeling that Mark Edwards was at the first NICE workshop in Jan
     
  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yes, I think he was. That makes a lot of sense now.

    At least one person has told me that he suspects NICE wants to lump ME under functional neurological symptoms. Russell has been contacted by the same person, I believe, as has Jane at TYMES Trust. Whether that's an accurate assessment or not . . . this study doesn't fill me with hope. I hope it's not true.
     
  15. Daisybell

    Daisybell Moderator Staff Member

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    Surely the fact that CBT doesn’t work negates the hypothesis for this study?
     
  16. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Mark Edwards is now quite a big player in the CMRC.

    I can't remember much about the study, discussed months ago, but I do know @Jonathon Edwards on PR was actually very impressed with it. The PR thread went into depth on it. Neil Harrison is one of its authors who has done talks, quite possibly at the last CMRC conference if anyone wants to look it up on YouTube, JE was very impressed with him too. I guess he might have been talking about this stuff at CMRC. I'm not up to engaging in heavy science over my head but perhaps using FND terminology is off putting to us for an otherwise useful brain study ?

    For anyone who's been in the scene for years, you might share my suspicion that the MRC is now only currently funding CFS as part of functional brain disorders. As I said, the study might have merit but in bad days after Colin blakemore was saying just fund behaviour stuff for CFS at MRC he was saying it's a brain disorder (I don't know where he gets any expertise on this subject) and Wessely I think has said similar - it's central fatigue etc. There's affiliation with FNS king Jon stone and chalder etc. Whilst the brain might well be key, Keeping it as a functional brain disorder is a "bearable shift" for the MRC in the way that funding research proving its a cellular energy issue, CNS infection etc might not be, Remember they've turned other CFS research down apparently.
     
    Last edited: Feb 21, 2018
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  17. Trish

    Trish Moderator Staff Member

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    MEMarge and Invisible Woman like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Do we know if this definitely is the research she was referring to? (I'm trying to go thro what the Minister said and come up with info related to it).
     
  19. Andy

    Andy Committee Member

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    Not definitely but it seems to be the only trial that fits the criteria of being funded by the MRC, researching the brain and finishes this year.

    To find it I used this site, http://gtr.rcuk.ac.uk/, and searched for all studies matching "chronic+fatigue+syndrome" which gave me this list, which I sorted by end date.
     
  20. Awol

    Awol Senior Member (Voting Rights)

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    This development was commented on by Invest in ME Research in their response to the NICE surveillance review last year.
    "It seems as though NICE is now complicit in the attempt in the UK to steer an increasing acceptance of CFS/ME in to the umbrella of functional (nothing wrong pathophysiologically) neurological disorders (FND)." http://www.investinme.org/IIMER-Newslet-17-07-04.shtml

    The relevant response starts on page 8 of the comment form:

    10. NICE states “ The experts also gave their thoughts on the current status of diagnostic criteria in NICE guideline CG53 and elsewhere, in light of these reports. Their comments included: The HHS Chronic Fatigue Syndrome Advisory Committee state: ‘A priority should be placed on developing biomarkers and diagnostic tests... research has neglected many of the biological factors underlying ME/CFS’. Whereas in the UK there may be increasing acceptance of CFS/ME in the umbrella of functional neurological disorders.”
    http://www.investinme.org/Documents/NICE/comments-form-2 - from INVEST in ME 23-7-2017.pdf


    Also, in September 2017, the Forward-ME Group submitted comments on a new draft NICE guideline for suspected neurological conditions: http://www.forward-me.org.uk/comments-form-2 Neuro doc for submission.pdf
    The draft guideline made specific references to ME and CFS: https://www.nice.org.uk/guidance/gid-cgwave0800/documents/draft-guideline

    The writing for this development has been on the wall for a few years; red flags included that the BPS lobby seemed to be conceding to describing ME as neurological and were making noises about the need to end the distinction between mental and neurological illnesses, such as this article by PDW: http://www.bmj.com/content/344/bmj.e3454
     

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