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  1. It's M.E. Linda
    Post

    Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

    I am trying to find out whether there is an email address for you to send your question to.
    Post by: It's M.E. Linda, Dec 5, 2020 in forum: Recruitment into current ME/CFS research studies
  2. It's M.E. Linda
    Post

    Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

    I have fed these ideas back to Nina. On the FB page, she has also received requests for a survey to include families with children under 18:...
    Post by: It's M.E. Linda, Dec 2, 2020 in forum: Recruitment into current ME/CFS research studies
  3. It's M.E. Linda
    Post

    Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

    Dr Nina has said that I can transfer her responses across to SfME, so for @Kitty .... Apparently you can still take part and your replies to the...
    Post by: It's M.E. Linda, Dec 2, 2020 in forum: Recruitment into current ME/CFS research studies
  4. It's M.E. Linda
    Post

    Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

    I have seen Dr Nina replying to queries on a private FB page and have asked her whether she is a member here/able to respond or whether I may...
    Post by: It's M.E. Linda, Dec 2, 2020 in forum: Recruitment into current ME/CFS research studies
  5. It's M.E. Linda
    Post

    Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

    Done!
    Post by: It's M.E. Linda, Dec 1, 2020 in forum: Recruitment into current ME/CFS research studies
  6. It's M.E. Linda
    Post

    United Kingdom: reMEmber news

    Not been released yet @Sarah94 - just checked again for you. Email from the end of last week said the recording was big and was taking some time...
    Post by: It's M.E. Linda, Nov 24, 2020 in forum: News from organisations
  7. It's M.E. Linda
    Post

    A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise. Jason et al. 2020

    This is from 12 May 2020, but I think I have seen it mentioned again in recent weeks (delayed due to Covid)....
    Post by: It's M.E. Linda, Nov 19, 2020 in forum: ME/CFS research
  8. It's M.E. Linda
    Post

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

    @dave30th some discussions here:...
    Post by: It's M.E. Linda, Nov 18, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  9. It's M.E. Linda
    Post

    United Kingdom: reMEmber news

    Excellent speakers. Drs Shepherd, Bansal, Muirhead, Worthley, Weir. I couldn’t concentrate totally for the full afternoon. It seemed to be...
    Post by: It's M.E. Linda, Nov 15, 2020 in forum: News from organisations
  10. It's M.E. Linda
    Post

    UK: The Yellow Card Scheme has been confirmed as the route to report 'adverse incidents' from GET and CBT (or has it?)

    Good idea and much needed. Discussed the continuing problem of GET being ‘prescribed’ relatively recently with Nicola C-B of @PhysiosforME [MEDIA]
    Post by: It's M.E. Linda, Nov 13, 2020 in forum: Psychosomatic news - ME/CFS and Long Covid
  11. It's M.E. Linda
    Post

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

    Very Good Point!!
    Post by: It's M.E. Linda, Nov 13, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  12. It's M.E. Linda
    Post

    Pain meds poll

    I am more ‘my pain is usually controlled by over the counter meds’ but I selected the final option anyway.
    Post by: It's M.E. Linda, Nov 13, 2020 in forum: Pain and Inflammation
  13. It's M.E. Linda
    Post

    UK: Action for ME: Job vacancies

    It doesn’t help when the Leader of the House ‘leads’ like this! (Don’t think he can have heard of the DDA or Equality Act either) [MEDIA]
    Post by: It's M.E. Linda, Nov 13, 2020 in forum: Work, Finances and Disability Insurance
  14. It's M.E. Linda
    Post

    A core outcome set - What core set of relevant health outcome measures should be used for trials of treatments for, and managing symptoms of, ME/CFS?

    @Andy it would probably be worth asking Caroline Kingdon of the U.K. ME/CFS Biobank (or one of the other trained nurses, because of course...
    Post by: It's M.E. Linda, Nov 13, 2020 in forum: General ME/CFS news
  15. It's M.E. Linda
    Post

    UK: The Yellow Card Scheme has been confirmed as the route to report 'adverse incidents' from GET and CBT (or has it?)

    I asked about a Warning on twitter too: [MEDIA]
    Post by: It's M.E. Linda, Nov 12, 2020 in forum: Psychosomatic news - ME/CFS and Long Covid
  16. It's M.E. Linda
    Post

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

    And we really need to see improvements for everyone with M.E. If we are discharged from a CFS/ME Service in the UK, most of us are reliant only...
    Post by: It's M.E. Linda, Nov 12, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  17. It's M.E. Linda
    Post

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

    Part of our problem? Another issue to solve. Throughout the whole of this BMJ article it reads ‘chronic fatigue syndrome’ (not even a ‘also known...
    Post by: It's M.E. Linda, Nov 11, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  18. It's M.E. Linda
    Post

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    I shared the films with my Dr Niece today. The response "3 GP friends already responded with thank yous. One is currently recovering from COVID...
    Post by: It's M.E. Linda, Nov 7, 2020 in forum: Advocacy Projects and Campaigns
  19. It's M.E. Linda
    Post

    Gary Burgess - The ME show, and updates about Gary's health.

    Devastating news.
    Post by: It's M.E. Linda, Nov 5, 2020 in forum: General ME/CFS news
  20. It's M.E. Linda
    Post

    Preventing Post Exertional Malaise - online talk with Staci Stevens and Dr Mark Van Ness - Thurs 22nd Oct 2:30pm

    Excellent work @Gecko please pass my thanks onto all the organisers. It was a really good and thought provoking talk, even for “someone who...
    Post by: It's M.E. Linda, Oct 22, 2020 in forum: General ME/CFS news
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