1. Guest, the 'News In Brief' post for w/c 12th Nov can be read here.
    Dismiss Notice

Treating chronic fatigue syndrome / Oxford Neuroscience

Discussion in 'PsychoSocial ME/CFS News' started by Cheshire, Sep 11, 2018.

  1. Cheshire

    Cheshire Senior Member (Voting Rights)

    Messages:
    833
    Likes Received:
    8,290
    Seems like MS still has friends in the UK at Oxford University:



    An ode to Michael's tremendous work (wondering who wrote this, I nearly choked while reading...):

    And the best (this was suposedly revised in 2018!):
    Direct link:https://www.neuroscience.ox.ac.uk/how-we-are-making-a-difference/treating-chronic-fatigue-syndrome
     
    Last edited: Sep 11, 2018
    Binkie4, Lidia, Tilney and 23 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,751
    Likes Received:
    30,223
    Presumably this is a departmental advert page so maybe Dr Sharpe wrote it.
     
  3. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,135
    Likes Received:
    6,769
    Perhaps staking things out for literature reviews for NICE.
    There will be a lot of positioning..
     
  4. James

    James Established Member (Voting Rights)

    Messages:
    81
    Likes Received:
    613
    The NIH retired the Oxford Criteria
    Continuing to use the Oxford definition (of ME/CFS) may impair progress and cause harm. National Institutes of Health Pathways to Prevention Workshop: Advancing the Research of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome draft statement
    CDC no longer recommend CBT or GET
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,751
    Likes Received:
    30,223
    I am pleased to say that we can be fairly sure the NICE committee will take no notice whatever of this!!
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    8,060
    Likes Received:
    45,488
    Location:
    UK
    Really - there are over a million people with ME? I don't think so.
    Oh, but I forgot, the Oxford definition also includes tired people.

    What planet are they living on?

    I think I'm going to be sick.

    Fake news.

    Sharpe has hit a new low with this. Oxford University should sack him.
     
    Manganus, Binkie4, Lidia and 29 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,021
    Likes Received:
    16,828
    My take on the whole write up is that 'they' can see that 'time is up' for the GET recommendation for ME/CFS and are pushing to retain CBT as so much of the 'research' past and present depends on it.

    (and not only ME/CFS research).

    (see also @Emsho post saying that the Libdems supported removal of GET but not CBT).

    This is why I think it is important to know what the content is for CBT used for ME/CFS patients.
    ie that it does not tell patients to ignore their symptoms and push through, and effectively encourage graded exercise; that the content is designed to help the patient cope with the illness, as opposed to try and 'overcome' it.

    Someone, somewhere needs to raise the whole issue of this blanket use of the term CBT and raise questions about its real effectiveness, or not, in 'treating' specific symptoms/conditions (not just for ME/CFS).
    see my post here:
    https://www.s4me.info/posts/102843/

    see also:
    https://www.s4me.info/posts/102452/
     
    Tilney, Gecko, Skycloud and 18 others like this.
  8. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    292
    Likes Received:
    2,574
    Location:
    Toronto
    I wanted to send them a quick email to say that I had taken a screenshot of this page as proof of their promotion of fraudulent research and iatrogenic harm but they don't supply an email address on their 'contact us' page: https://www.neuroscience.ox.ac.uk/about/contact-us

    Even that is stuck in the 20th century.
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    2,405
    Likes Received:
    11,860
    Is medical fraud a crime?
     
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    1,715
    Likes Received:
    12,512
    Location:
    UK East Midlands
    Definitely agree with this @Sly Saint it goes back to that thread we had a while back about all the different names they give to CBT/GET including CFS/me clinic style pacing, ME management programmes etc. Just because it is called CBT/Pacing/management of ME doesn’t mean they don’t either blatantly or subtly try to prompt you to up your activity. So anything that promotes increased activity based on ignoring symptoms should be off the agenda whatever it is called because it is PACElite
     
  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    389
    Likes Received:
    2,604
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    496
    Likes Received:
    3,196
    It’s astonishing this out of date propaganda has been allowed. It looks like Sharpe trying to maintain face with his Oxford peers to me. Reinforces my belief that PACE couldn’t be allowed to fail because of the egos and size of the investment.
    It is sad that hes influencing how fatigue in other illness is being treated, after ignoring fatigue, to then CBT it instead of looking for underlying treatable mechanisms seems very unhelpful. It’s true it’s happening as Rona moss Morris is heavily involved with the MS society but I’d hardly call her work brilliant science, she thinks CBT the solution to everything, there’s no head that cap doesn’t fit and she can produce a weak study to prove it.
     
  13. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    4,550
    Likes Received:
    20,895
    "Neuroscience" sounds seriously scientific. Is it one of those words like "Nutritionist" which anyone can use? I don't suppose we could ask the ASA to get them to change it to "Oxford Psychobabble", or even "Oxford Quackery"?

    "Dr Sharpe, Head of Quackery, Oxford" has a certain ring to it. Why has Oxford got a Quackery Department, and why do they insist on calling it "Oxford Neuroscience"?

    What have they done with the real neuroscientists (whatever they are)? Maybe they got mistakenly swept up in the Oxford pogrom of Registered Dieticians and they're all locked in a cupboard somewhere. I reckon there could be a scandal brewing here.
     
    EzzieD, alktipping, Pechius and 12 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,021
    Likes Received:
    16,828
    tiredsam, what are you on? and where can I get some..:D
     
    Manganus, EzzieD, alktipping and 10 others like this.
  15. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    732
    Likes Received:
    5,803
    PACE really has revolutionised our understanding of how to treat CFS and ME. We now know we cannot use CBT or GET, that the Oxford criteria is far past its use-by date, and that what matters most is objective outcome measures. Subjective outcome measures in unblinded trials are a nonsense. Also we know that huge numbers of doctors and those claiming to be scientists do not properly scrutinise research or have an inadequate understanding of statistics.
     
  16. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    732
    Likes Received:
    5,803
    Oh, can I buy it online?
     
    alktipping, MeSci, MEMarge and 6 others like this.
  17. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    4,550
    Likes Received:
    20,895
    I'm on my sofa.
    I'll let you know when we put it on ebay. It'll probably be after the kids have left home, but I've made a note of your interest.
     
    EzzieD, alktipping, Hutan and 12 others like this.
  18. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,590
    Likes Received:
    11,190
    I’ve finished my trial sample now Sam, thanks. I’m thinking the dose was a bit high though ? Mrs Sloth said that I’ve been ranting about Jamie Oliver too much and it’s gettimg on her nerves?

    I’m interested in placing an order ...is there a discount in place for bulk orders?
     
    Manganus, EzzieD, alktipping and 8 others like this.
  19. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    4,550
    Likes Received:
    20,895
    How bulky are you? It's an old sofa and not as stable as it was. Perfect for ranting about Jamie Oliver and many other subjects though.
     
    EzzieD, alktipping, andypants and 7 others like this.
  20. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,590
    Likes Received:
    11,190
    Well I thought that the cushion you sent me was odd? Nevertheless who am I to question treatments sent to me by post so I ate around half the stuffing in one sitting. I think I went a bit fast though since I felt a bit queesey afterwards like my liver was detoxing too fast ? so I slowed down and finished the lot in small amounts over the week.

    My feedback is that some easy to swallow capsules would help...I would definitely spend more for those.
     
    EzzieD, alktipping, Hutan and 7 others like this.

Share This Page