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  1. MEMarge
    Thread

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    The following posts have been moved from this thread. Have just noticed this on AfME website:...
    Thread by: MEMarge, Oct 22, 2019, 126 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  2. MEMarge
    Post

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    Interesting paper on initial work they have done. https://people.bath.ac.uk/cs3sj/papers/CHI2019-jones.pdf Not sure I would say ME leads to...
    Post by: MEMarge, Oct 20, 2019 in forum: Recruitment into current ME/CFS research studies
  3. MEMarge
    Post

    Denmark: Interview with Per Fink in Dagens Medicin

    @Jonathan Edwards, have you seen posts from @cathrine engsig #27 and @MEinDenmark #17 Just checking.
    Post by: MEMarge, Oct 20, 2019 in forum: General ME/CFS news
  4. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Apologies @NelliePledge, my comment came across too strong.
    Post by: MEMarge, Oct 17, 2019 in forum: Open Letters and Replies
  5. MEMarge
    Post

    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

    Have a good rest, you have been amazing. Thankyou
    Post by: MEMarge, Oct 17, 2019 in forum: General ME/CFS news
  6. MEMarge
    Post

    Examining Hope as a Transdiagnostic Mechanism of Change Across Anxiety Disorders and CBT Treatment Protocols (2019), Gallagher et al.

    My hope right now is for biomedical science research breakthroughs and resources for that commensurate with actual disease burden. Alongside that...
    Post by: MEMarge, Oct 17, 2019 in forum: Other psychosomatic news and research
  7. MEMarge
    Post

    Action for M.E. 2019 AGM and conference 15th October 2019

    Thanks Natalie. Ed Scully did say that he has a couple of friends and a, not immediate, family member with ME, and seemed to grasp that it is not...
    Post by: MEMarge, Oct 17, 2019 in forum: General ME/CFS news
  8. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    I was pleased to attend the conference yesterday and felt encouraged in several ways, which I will expand on later. I do feel that the attitude...
    Post by: MEMarge, Oct 17, 2019 in forum: Open Letters and Replies
  9. MEMarge
    Post

    Secret medical recordings ‘reprehensible’ but allowed as evidence

    Think this phrase has a definite resonance! "There are examples of experts being less than accurate in their account....." It is relevant to so...
    Post by: MEMarge, Oct 17, 2019 in forum: Other health news and research
  10. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    The two booklets ie Employer and Employee are very similar initially. P4, "What is ME?" incudes the following statements: "Around a quarter of...
    Post by: MEMarge, Oct 13, 2019 in forum: Open Letters and Replies
  11. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Thanks Trish. I can now access them online again.
    Post by: MEMarge, Oct 13, 2019 in forum: Open Letters and Replies
  12. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    From their website it looks as though a couple of the toolkits, not the one for professionals, have been updated. Does anyone know how different...
    Post by: MEMarge, Oct 13, 2019 in forum: Open Letters and Replies
  13. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    AfME website seems to be currently inaccessible. Maybe they are changing things....
    Post by: MEMarge, Oct 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  14. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    A big thank you to everyone on the thread who have made suggestions. Please note that MEAction UK is reliant on a small number of healthy...
    Post by: MEMarge, Oct 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  15. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Thanks @InitialConditions, have forwarded this.
    Post by: MEMarge, Oct 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  16. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Yes, happily. If you want to send me an outline of why severe young people, such as your daughter, were not able to participate in the latest...
    Post by: MEMarge, Oct 10, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  17. MEMarge
    Post

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Wonder if their "Big Survey" results to be released at their AGM, next Tues, 15 Oct, will include any info on how many people with ME can...
    Post by: MEMarge, Oct 10, 2019 in forum: Open Letters and Replies
  18. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Exactly! I will try and find out roughly how many CYP were recruited, next Tues at AfME AGM. I have a nasty feeling it may be quite a small...
    Post by: MEMarge, Oct 10, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  19. MEMarge
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    The survey has been closed since at least last friday, 27 Sep. Per AfME *Please not that Oxford Brookes have temporarily closed recruitment...
    Post by: MEMarge, Oct 7, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  20. MEMarge
    Post

    Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev

    Thanks
    Post by: MEMarge, Oct 7, 2019 in forum: ME/CFS research
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