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Page 18 of 28
  1. It's M.E. Linda
    Post

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    I agree with @NelliePledge . I have had far more questions from healthy friends about my health, experiences and the state of biomedical research...
    Post by: It's M.E. Linda, Nov 19, 2019 in forum: Recruitment into current ME/CFS research studies
  2. It's M.E. Linda
    Post

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    @mariovitali, I am a UK ME/CFS Biobank participant and, if I can help in any way, please shout! Thank you @Andy @Simon M @Chris Ponting for all...
    Post by: It's M.E. Linda, Nov 9, 2019 in forum: ME/CFS research news
  3. It's M.E. Linda
    Post

    Open letter to Dr Peter Fisher, Liverpool University, about a research survey on emotional distress and CFS. 2019

    Ditto to what the others have written @Trish Very clear, detailed, polite and informative.
    Post by: It's M.E. Linda, Nov 8, 2019 in forum: Open Letters and Replies
  4. It's M.E. Linda
    Post

    UK Parliamentary debate today - Thursday 24th January 2019

    I am sorry @Eagle if you are still lacking in stamina, but if you are able to expand on your comments from April, it would be very interesting.
    Post by: It's M.E. Linda, Oct 31, 2019 in forum: General ME/CFS news
  5. It's M.E. Linda
    Post

    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    BioBank appt #3 is due this week. I have previously noted during the ‘standing Blood Pressure tests’ that my Brainfog comes on from just standing...
    Post by: It's M.E. Linda, Oct 22, 2019 in forum: ME/CFS research news
  6. It's M.E. Linda
    Post

    EU Petition 2019 - opportunity to lobby for funding for ME research

    Are you on twitter @Ravn ? [MEDIA] If not, I’m sure @Michiel Tack (or I) would be happy to send your message to @Rory_Palmer and also @Jude_KD...
    Post by: It's M.E. Linda, Oct 4, 2019 in forum: Petitions
  7. It's M.E. Linda
    Post

    A Life Hidden - Blog posts by Naomi Whittingham

    How about “doing a Dave Tuller” by writing a public message to the organisation @Naomi10 ? Perhaps on the basis that your many readers have...
    Post by: It's M.E. Linda, Oct 2, 2019 in forum: General ME/CFS news
  8. It's M.E. Linda
    Post

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

    Very many congratulations to you Granny @Natalie ! Please pass my very best wishes to all the Family from me, Hubby and Greyhound “Happy Hound”...
    Post by: It's M.E. Linda, Oct 1, 2019 in forum: Advocacy Projects and Campaigns
  9. It's M.E. Linda
    Post

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

    I second that. I am also very sad. I realise CS is pulled in many different ways and really appreciate all the work and efforts he continues to...
    Post by: It's M.E. Linda, Sep 30, 2019 in forum: Advocacy Projects and Campaigns
  10. It's M.E. Linda
    Post

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

    This really resonates with me. I have deliberately made sure that I walk (the dog) as much as I can (its not much), just because my muscle mass...
    Post by: It's M.E. Linda, Sep 30, 2019 in forum: Advocacy Projects and Campaigns
  11. It's M.E. Linda
    Post

    Closed Your experience of ME/CFS services - Take the survey by #MEAction UK

    If I couldn’t even put my shoes on, I didn’t take the dog for his walk. Not quite as dangerous as drowning. But certainly falls into the “I didn’t...
    Post by: It's M.E. Linda, Sep 25, 2019 in forum: Recruitment into current ME/CFS research studies
  12. It's M.E. Linda
    Post

    Moving from stigmatization toward competent interdisciplinary care of patients with [FND]: focus group interviews, 2019, Klinke et al

    Thank you @Andy :emoji_bouquet: - your warnings allow me to ‘step away’ from the anger-inducing articles.....I just hope that you manage to keep...
    Post by: It's M.E. Linda, Sep 19, 2019 in forum: Other psychosomatic news and research
  13. It's M.E. Linda
    Post

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

    Email from CureME has been received confirming that they will be submitting their published papers for consideration to the NICE committee.
    Post by: It's M.E. Linda, Sep 18, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  14. It's M.E. Linda
    Post

    Researcher Interactions Video: Science for ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019 - Part 1 and 2

    Thank you again Andy!
    Post by: It's M.E. Linda, Sep 16, 2019 in forum: ME/CFS research news
  15. It's M.E. Linda
    Post

    Researcher Interactions Video: Science for ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019 - Part 1 and 2

    Managed to get through the videos, very slowly. Thank you so much @Andy and Dr Morten. Some further questions/ideas which would be good to know...
    Post by: It's M.E. Linda, Sep 16, 2019 in forum: ME/CFS research news
  16. It's M.E. Linda
    Post

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

    I agree with the email idea. Perhaps parents could also add in ideas of what adjustments would be needed, in order that their child might have...
    Post by: It's M.E. Linda, Sep 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  17. It's M.E. Linda
    Post

    A study I want someone to do

    Interesting. If I wake with a sore throat (and as if Harry Potter’s Knight Bus has run me over), I absolutely know PEM has hit me. Says a lot...
    Post by: It's M.E. Linda, Sep 7, 2019 in forum: ME/CFS research
  18. It's M.E. Linda
    Post

    Hope 4 ME & Fibro Northern Ireland event (Wed 4th September 2019): New Frontiers in M.E. -Transforming Patient Safety & Care

    Really looking forward to a report when @obeat and @JoanNI (and all other Hope4ME volunteers ) are feeling able to think again. Thank you, in...
    Post by: It's M.E. Linda, Sep 7, 2019 in forum: General ME/CFS news
  19. It's M.E. Linda
    Post

    Monaghan & Shepherd meeting DWP and assessment companies

    I remember the whole investigation by the Work&Pensions Committee early 2018. The Govt hadn’t even implemented the sound suggestions made by the...
    Post by: It's M.E. Linda, Sep 7, 2019 in forum: General Advocacy Discussions
  20. It's M.E. Linda
    Post

    UK - New chief medical officer/government adviser appointed, 2019

    My twitter thread: [MEDIA] Email on my ‘to do’ list is to write to Biobank and check whether they have invited him for a walk about the labs.
    Post by: It's M.E. Linda, Sep 7, 2019 in forum: Other health news and research
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