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  1. MEMarge
    Post

    UK: Priority Setting Partnership for ME/CFS

    Thanks @Amw66, I am disappointed that there are only 13 replies from those caring for under 16s. I suspect that many parents are too scared to...
    Post by: MEMarge, Jun 8, 2021 in forum: Advocacy Projects and Campaigns
  2. MEMarge
    Post

    Tolerability & Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study, 2021, Scheibenbogen

    Why are these researchers using the CFQ and no objective measures, even a pedometer would be more useful?
    Post by: MEMarge, Jun 7, 2021 in forum: ME/CFS research
  3. MEMarge
    Post

    UK: Priority Setting Partnership for ME/CFS

    Next step is that the Information Analyst groups similar questions together. This will be done in conjunction with a sub-group of us, comprising...
    Post by: MEMarge, Jun 7, 2021 in forum: Advocacy Projects and Campaigns
  4. MEMarge
    Post

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

    Sorry for slow reply. I was posting in haste and meant Neglected Illness as in Natalie Boulton's dialogues for a neglected illness:...
    Post by: MEMarge, Jun 6, 2021 in forum: 2021 Cochrane Exercise Therapy Review
  5. MEMarge
    Post

    Open US: The CHROME (CHRonic Fatigue SyndrOME) study

    Do you know who is running this study @Andy?
    Post by: MEMarge, Jun 6, 2021 in forum: Recruitment into current ME/CFS research studies
  6. MEMarge
    Post

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

    I think that sadly she would be too unwell to be part of the process. Alongside working part-time and a young family, she is already working hard...
    Post by: MEMarge, Jun 5, 2021 in forum: 2021 Cochrane Exercise Therapy Review
  7. MEMarge
    Post

    United Kingdom: News from Forward-ME Group

    Minutes from 21st April meeting here: http://forward-me.co.uk/21st-april-2021.html
    Post by: MEMarge, Jun 3, 2021 in forum: News from organisations
  8. MEMarge
    Post

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

    I think @Sly Saint nailed this process in an earlier post "a report about setting up a committee to debate how to write a report to answer an...
    Post by: MEMarge, Jun 3, 2021 in forum: 2021 Cochrane Exercise Therapy Review
  9. MEMarge
    Post

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

    Qoute from Clare Gerada, not sure it's been posted elsewhere. Is from a Medscape UK update email...
    Post by: MEMarge, Jun 1, 2021 in forum: UK clinics and doctors
  10. MEMarge
    Post

    Adverse outcomes in trials of graded exercise therapy for adult patients with chronic fatigue syndrome, 2021, White & Etherington

    Does @Jonathan Edwards know J Etherington I wonder? He is a Consultant Rheumatologist? Also has Forces rehab links. "SPECIALIST INTERESTS...
    Post by: MEMarge, Jun 1, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  11. MEMarge
    Post

    The European Association of Psychosomatic Medicine (EAPM)

    Programme available here, in case anyone is interested. https://www.eapm2021.com/program/
    Post by: MEMarge, May 25, 2021 in forum: Organisations relevant to ME/CFS and Long Covid
  12. MEMarge
    Post

    Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme, 2006, O'Dowd et al

    Some extracts from the same HTA "Executive Summary" "The economic impact appears substantial, with over 60% of patients citing the onset of...
    Post by: MEMarge, May 24, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. MEMarge
    Thread

    Cognitive behavioural therapy in chronic fatigue syndrome: a randomised controlled trial of an outpatient group programme, 2006, O'Dowd et al

    2 posts moved from: NICE Health topics: Tiredness/Fatigue in adults (includes CFS). _________ The NHS seems to consider GET and CBT as Health...
    Thread by: MEMarge, May 24, 2021, 1 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  14. MEMarge
    Post

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    Interesting message from Gillian Leng NICE CEO in Oct 2020, following the Cumberledge Report....
    Post by: MEMarge, May 24, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  15. MEMarge
    Post

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    To be fair, this guy has a medical degree: Russell Mulcahy Strategy Director Russell supports the Board and the senior team in developing long...
    Post by: MEMarge, May 24, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  16. MEMarge
    Post

    New Video: Long Covid, Post Viral Fatigue Syndrome and ME/CFS

    Absolutely brilliant @Adam pwme, you have real skills compiling these videos. I will be sharing.
    Post by: MEMarge, May 21, 2021 in forum: Resources
  17. MEMarge
    Post

    Adolescent and Young Adult ME/CFS After Confirmed or Probable COVID-19, 2021, Petracek et al

    Above study n=3 patients.
    Post by: MEMarge, May 19, 2021 in forum: ME/CFS research
  18. MEMarge
    Post

    Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study, 2020, Cullinan, Kindlon et al

    Hi @Orla, excllent paper, good to see you on here.
    Post by: MEMarge, May 17, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  19. MEMarge
    Post

    UK: Priority Setting Partnership for ME/CFS

    Excellent questions @Trish as I'd expect. The steering group will be getting our first feedback re the questions being asked in early June....
    Post by: MEMarge, May 17, 2021 in forum: Advocacy Projects and Campaigns
  20. MEMarge
    Post

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

    Great article in the Healthwatch Spring newsletter, by @Caroline Struthers...
    Post by: MEMarge, May 17, 2021 in forum: 2021 Cochrane Exercise Therapy Review
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