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  1. M

    DecodeME - UK ME/CFS DNA study underway

    I understand that the team have an excellent candidate starting the new Comms role next week. One with lived experience of ME.
  2. M

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Have attached file to our converstion @Caroline Struthers
  3. M

    JOSPT: Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS - Décary et al - 2021

    Thank you again for all you are doing to help people with ME and Long Covid and to educate other professionals.
  4. M

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I was impressed by the last speaker at the conference, Professor Ken Stein.who is Director of the NIHR Systematic Reviews. he therefore controls much of Cochrane purse strings. He made it clear that Cochrane were no longer the only "organisation in town" that reviewed evidence to produce...
  5. M

    Open Medicine Foundation (OMF)

  6. M

    Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

    My take on that would be questions such as: Why has so much research to date used subjective questionnaires without any objective data. Discussions of results of these papers frequently recommends that objective measures, such as actometers are used in the future, but this never seems to have...
  7. M

    Clare Gerada: influence on UK medical practice and ME/CFS management

    I would have thought nurses would prefer better pay and better working conditions to this type of garbage.
  8. M

    Weʼre raising £35,000 to Continue Vital ME Research, Keith Geraghty, 2021

    I thnk some of us were a bit concerned that you might get dehydrated if you never got your elevenses..!
  9. M

    Weʼre raising £35,000 to Continue Vital ME Research, Keith Geraghty, 2021

    Now only £38 off £22k, don't keep @Jonathan Edwards waiting too long for his coffee.
  10. M

    Weʼre raising £35,000 to Continue Vital ME Research, Keith Geraghty, 2021

    I was surprised in the other direction last week, more US dollars for my sterling.
  11. M

    Weʼre raising £35,000 to Continue Vital ME Research, Keith Geraghty, 2021

    Dave has now reached target!
  12. M

    Crowdfunding: Trial by Error [David Tuller] Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Spring 2021

    Woohoo, that's brilliant. GO Dave
  13. M

    News from Aotearoa/New Zealand and the Pacific Islands

    Above Q and A is much better than our Science Media Centre would produce. It actually asks people who have an understanding of Long Covid and ME!
  14. M

    Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

    Yes it does have a British focus, though there are not many biomedical scientists in UK working on ME.
  15. M

    Guardian: Long Covid is very far from ‘all in the mind’ – but psychology can still help us treat it - by Carmine M Pariante, April 2021

    I think CMRC may be "morphing" as Stephen Holgate is stepping down - probably considering its role/direction/members for now.
  16. M

    Webinar: Centre for Welfare Reform: Improving Policies for Welfare & Work with Energy Limiting Chronic Illness, 27th April 2021, 11am UK

    Excellent webinar, it will be put on Youtube. Link to full report: https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/04/CfWR-ELCI-and-Work-b.pdf https://chronicillnessinclusion.org.uk/i-already-have-a-job-getting-through-the-day/
  17. M

    Hand grip strength and fatigability: correlation with clinical parameters and diagnostic suitability in ME/CFS, 2021, Jakel,Scheibenbogen et al

    The Cure ME team at LSHTM also did a study on this. https://pubmed.ncbi.nlm.nih.gov/30538664/
  18. M

    Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with [CFS], 2021, Crawley et al

    Barriers to recovery and current treatments. There are no current treatments or cures. A small % seem to recover, we don't know why. Feasibility of doing an RCT. Yeah, loads of dosh to spend on youngsters who may or may not have ME, plenty of subjective questionnaires and nothing objective like...
  19. M

    Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

    You can put more than one idea in a box and complete it several times over the period that it is open.
  20. M

    Is ME/CFS seen as a risk/priority group in the vaccination against sars cov 2 in your country?

    My son, who lives in Belgium has Type 1 diabetes and that is not a priority there. The govt there aim to vaccinate their adult population by Sep I think.
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