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  1. It's M.E. Linda
    Post

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

    Had to w/t my Research Nurse at CureME today, so I asked that he check that someone there will be replying to the stakeholder letter with details...
    Post by: It's M.E. Linda, Sep 3, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  2. It's M.E. Linda
    Post

    David Tuller - Discusses M.E./C.F.S and the UK Medical Establishment. 19 Oct 2019

    Thank you. I would have loved to have come (neighbouring County and could just about have managed that with my driver ;)) but my diary already...
    Post by: It's M.E. Linda, Sep 2, 2019 in forum: General ME/CFS news
  3. It's M.E. Linda
    Post

    David Tuller - Discusses M.E./C.F.S and the UK Medical Establishment. 19 Oct 2019

    @John Mac Do you know whether the group will manage to find a healthy volunteer who can either film or live tweet during the event please?...
    Post by: It's M.E. Linda, Sep 1, 2019 in forum: General ME/CFS news
  4. It's M.E. Linda
    Post

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

    Sorry, my Braincell is not up to scratch at present, but @Andy @adambeyoncelowe , would some/any/all papers written by Cure M.E. be suitable to...
    Post by: It's M.E. Linda, Aug 31, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  5. It's M.E. Linda
    Post

    Fundraising for ME/CFS research - opportunities, problems

    When money was a lot tighter, an easy option was to shop online through a link where a small percentage or fee is donated to the charity.....I was...
    Post by: It's M.E. Linda, Aug 15, 2019 in forum: General Advocacy Discussions
  6. It's M.E. Linda
    Post

    ME Association magazine summer 2019

    A well balanced view @Michiel Tack (as always) and another welcome to @NeilH for joining the forum.
    Post by: It's M.E. Linda, Aug 15, 2019 in forum: General Advocacy Discussions
  7. It's M.E. Linda
    Post

    Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (2019) Tabby Davies, Simon Jones, Ryan Kelly

    I may be repeating this, not sure, no extra power to check at the moment: http://people.bath.ac.uk/cs3sj/papers/CHI2019-jones.pdf
    Post by: It's M.E. Linda, Aug 14, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  8. It's M.E. Linda
    Post

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Me too!
    Post by: It's M.E. Linda, Aug 11, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  9. It's M.E. Linda
    Post

    Factors associated with work status in chronic fatigue syndrome (2019) S A M Stevelink, N T Fear, M Hotopf, T Chalder

    I will be included in this assessment. Attended a CFS/ME Clinic from Jan 2014- discharged early Jan 2015 ‘Self reported current employment...
    Post by: It's M.E. Linda, Aug 4, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. It's M.E. Linda
    Post

    On line ‘survey’ re UK CFS/ME specialist services

    I found out about the survey, only by accident, last week through a local support group. Despite having many members who would still be using...
    Post by: It's M.E. Linda, Jul 31, 2019 in forum: General ME/CFS news
  11. It's M.E. Linda
    Post

    On line ‘survey’ re UK CFS/ME specialist services

    EDIT: (to actually add my comment) @Jonathan Edwards I hope you are aware of this ‘Survey’ which may be used as ‘evidence’ that CFS patients love...
    Post by: It's M.E. Linda, Jul 31, 2019 in forum: General ME/CFS news
  12. It's M.E. Linda
    Post

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    I am probably naive, but if the new editor was involved in the process of the review (@Trish ‘s post) then, hopefully, she has the..... strength...
    Post by: It's M.E. Linda, Jul 30, 2019 in forum: General Advocacy Discussions
  13. It's M.E. Linda
    Post

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    [MEDIA]
    Post by: It's M.E. Linda, Jul 29, 2019 in forum: General Advocacy Discussions
  14. It's M.E. Linda
    Post

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    My take - I now need to add both the excellent photos by @theJOYdecision and a link to @observer - perhaps a retweet with those added details...
    Post by: It's M.E. Linda, Jul 29, 2019 in forum: General Advocacy Discussions
  15. It's M.E. Linda
    Post

    Anyone any experience with probiotics?

    I started using a probiotic (Natures AID pro-30 MAX, 30 Billion Live Bacteria, Daily, Super Strength) in 2014 having contracted Sepsis in 2013 and...
    Post by: It's M.E. Linda, Jul 17, 2019 in forum: Nutrition, food sensitivity, microbiome treatments
  16. It's M.E. Linda
    Post

    Europe: European Federation of Neurological Associations (EFNA)

    “#BrainLifeGoals.......to have a specialist actually acknowledge that M.E. is a neurological condition and could they please catch up, encourage...
    Post by: It's M.E. Linda, Jul 17, 2019 in forum: News from organisations
  17. It's M.E. Linda
    Post

    Article - Joe Burns (cricketer) diagnosed with 'fatigue disorder' June 2019

    ‘Walking wounded’ - I can drive, enjoy activities, even vacuum for 10 mins at a time but any activity (even reading) will always produce symptoms...
    Post by: It's M.E. Linda, Jul 17, 2019 in forum: General ME/CFS news
  18. It's M.E. Linda
    Post

    Monitoring treatment harm in [ME/CFS]: A freedom-of-information study of National Health Service specialist, 2019, McPhee et al

    Would @Graham @Tom Kindlon et al be interested as a follow up to their paper? The satellite clinic (of a CFS/ME clinic in neighbouring County)...
    Post by: It's M.E. Linda, Jul 17, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  19. It's M.E. Linda
    Post

    Article - Joe Burns (cricketer) diagnosed with 'fatigue disorder' June 2019

    Glandular Fever (common in youngsters) and PVFS. My ‘first’ diagnosis was PVFS in 2001. 7 months completely off work (Housebound), then slow...
    Post by: It's M.E. Linda, Jul 16, 2019 in forum: General ME/CFS news
  20. It's M.E. Linda
    Post

    Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS (Simon McG blog)

    And I will be second in the Virtual Queue @Sasha Fundraising possibilities @Simon M : 1) Any return envelope (pre paid from U.K.) for the pot...
    Post by: It's M.E. Linda, Jul 3, 2019 in forum: ME/CFS research news
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