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  1. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A series of posts about PEM in young people have been moved here: Defining and Measuring Post-Exertional Malaise - a discussion
  2. Hutan

    How to assess if a research paper has used best-practice protocols?

    The UK Science Media Centre has been a hotbed of BPS support. It has close ties with BPS proponents; I think Wessely has been on the board? It is regularly commented on in this forum. It often/usually seems to be a PR machine, rather than having any commitment to increasing understanding of...
  3. Hutan

    Sleep problems in adolescents with CFS: A case-control study nested within a prospective clinical cohort : Loades, Rimes and Chalder, May 2020

    This is really nasty stuff. There's lots about catastrophising and yet, in a paper on sleep problems, it says nothing about how many hours the young people were sleeping - so nothing about hypersomnia. I wish funders would stop giving these people money to do what is essentially a campaign...
  4. Hutan

    News from Scandinavia

    Interview with Jonas Bergquist - thread here: Interview with ME researcher Jonas Bergquist Nov 2020
  5. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Posts about a blog psychologising Long Covid have been moved here: https://www.s4me.info/threads/bps-attempts-at-psychologizing-longcovid.16013/page-18#post-302867 A post about a $1 million grant to OMF to fund a study of ME/CFS after Covid-19 has been moved here...
  6. Hutan

    UK: 'Managing my ME', 2010, ME Association

    Yes, if you are interested and able, come over to this thread, and join the conversation about how ME diagnosis, care planning and care delivery should be organised...
  7. Hutan

    The 2nd International Virtual Congress on Controversies in Fibromyalgia 19-20 November 2020

    Wow, registration is 250 pounds. That's enormous for a 2 day virtual conference. Some of the presentations sound a bit interesting.
  8. Hutan

    UK: 'Managing my ME', 2010, ME Association

    "Question 29 Who would you like to co-ordinate the management of your illness? The GP, followed by a combination of GP and consultant physician, was the most preferred for co-ordination. A psychologist or psychiatrist was the least preferred. The answers given to Questions 29-32 are fully...
  9. Hutan

    UK: 'Managing my ME', 2010, ME Association

    People in this survey were actually quite keen for dietary advice - which surprises me a bit. They were a lot keener for counselling than CBT. (I'm just sliding on past the enthusiasm for alternative therapies - but it is interesting to compare that with the desire for CBT and GET.)
  10. Hutan

    UK: 'Managing my ME', 2010, ME Association

    'Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don’t are available for downloading. The link to the PDF is at the bottom of this story. The survey also shows what people with the...
  11. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A number of posts about UK NHS Long Covid clinics have been moved here: https://www.s4me.info/threads/uk-nhs-england-online-tool-and-clinics-for-long-covid.15790/
  12. Hutan

    Jo Daniels (on CBT, ME/CFS and Long Covid)

    Here are the relevant bits from the very long article quoted in the original post: How is long Covid treated? Treatment is a thorny area when it comes to conditions where biological causes are undetermined. For ME/CFS and PVFS, it’s the reason there can be so much misunderstanding among the...
  13. Hutan

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Re the SMC reaction: Crawley's endorsement of the Lightning Process made it very clear that the standard BPS trial approach of subjective outcomes and unblinded treatments could make even standing on a paper circle saying 'stop' look like a reasonable treatment. That Smile Trial should have...
  14. Hutan

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    They've lost the ME/CFS battle, but there's still the MUS war. In fact it's not even a war- it's more like a largely uncontested MUS occupation with the occasional bit of guerrilla 'sniping'. And then there are the new territories of post-Covid-19 to expand into. (edit to remove a mixed metaphor).
  15. Hutan

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I agree that there's still scope for GET-like therapies to be promoted as meeting the guideline. But the guideline does stress that energy should be allocated to activities of daily living before exercise, and there's a good focus on physical maintenance rather than exercise. I don't think...
  16. Hutan

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Terrific content about providing practical assistance: There's more about assistance for carers, social care needs assessments, and content on safeguards that may stop allegations of parental abuse:
  17. Hutan

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    It is great, but there will be stuff for us to comment on too. e.g. i.e. CBT being mentioned (albeit as part of a list of possible management actions), when supportive counselling is not.
  18. Hutan

    NICE ME/CFS draft guideline - publication dates and delays 2020

    The draft guideline is available for comment!!! (yes, a departure from my usual disdain for exclamation marks - some things warrant them) Here's the main thread, with reactions to the draft guideline...
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