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  1. Gecko
    Thread

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

    Your experience of ME services - Survey report by #MEAction UK Article:...
    Thread by: Gecko, Oct 17, 2019, 41 replies, in forum: General ME/CFS news
  2. Gecko
    Post

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

    Got our submission in yesterday - phew. Rather glad it's done! You can read the full thing here:...
    Post by: Gecko, Oct 17, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  3. Gecko
    Post

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

    Thanks for getting this @Barry! Will add it to our submission. I really do hope that the number of patient surveys showing pwme deteriorating...
    Post by: Gecko, Oct 4, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  4. Gecko
    Post

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

    Yes! Cheers @Barry. Annoyingly it appears to just include results from an A4ME survey, without referencing which one, and doesn't collate other...
    Post by: Gecko, Oct 1, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  5. Gecko
    Post

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

    The link to the APPG report is just taking me to a resources page on Action for ME's website. Anyone got the link to the actual report handy?...
    Post by: Gecko, Oct 1, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  6. Gecko
    Post

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

    The National Archives was my only thought of a possible place they'd be, but no luck. - would be good to know if you do find anywhere.
    Post by: Gecko, Oct 1, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  7. Gecko
    Post

    The Norwegian ME Association's report on severe ME

    Hi @trudeschei, just wondering if an English version of this report is imminent? I'm wanting to include it in #MEAction UK's submission to the...
    Post by: Gecko, Sep 30, 2019 in forum: General ME/CFS news
  8. Gecko
    Post

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

    There is an option to choose "private clinic" under the drop down question asking which clinic you attended. And yes I see that is confusing - it...
    Post by: Gecko, Sep 24, 2019 in forum: Recruitment into current ME/CFS research studies
  9. Gecko
    Post

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

    Welcome to participate in Scotland - whilst true that Scotland has it's own statement of good practice all the government and NHS bodies are...
    Post by: Gecko, Sep 24, 2019 in forum: Recruitment into current ME/CFS research studies
  10. Gecko
    Thread

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

    The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for...
    Thread by: Gecko, Sep 24, 2019, 13 replies, in forum: Recruitment into current ME/CFS research studies
  11. Gecko
    Post

    Patient survey by the Dutch ME/CFS Association - Corsius et al. 2019

    Definitely is!
    Post by: Gecko, Sep 14, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  12. Gecko
    Post

    Patient survey by the Dutch ME/CFS Association - Corsius et al. 2019

    I'll add it to the list we're reviewing for the #MEAction UK submission, @adambeyoncelowe @Andy.
    Post by: Gecko, Sep 13, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. Gecko
    Post

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

    That template is available on the NICE website, all submissions have to follow it. It says:
    Post by: Gecko, Sep 10, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  14. Gecko
    Post

    Help for sound sensitivity

    Hi @Sarah94, yes they do cause a little pressure, not sure you'd be able to find a pair that don't, but it's significantly less than other pairs...
    Post by: Gecko, Jul 18, 2019 in forum: Home adaptations, mobility and personal care
  15. Gecko
    Post

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    Not so much me personally but as a team at #MEAction UK we are. I'll flag this up, and see if we can get a brief overview of what you've reported...
    Post by: Gecko, Jun 11, 2019 in forum: ME/CFS research news
  16. Gecko
    Post

    Jen Brea: My ME is in remission

    Have either you @ScottTriGuy or @JenB had the Short Synacthen Test done, looking at adrenal insufficiency? Only ask as I've just had this come...
    Post by: Gecko, May 25, 2019 in forum: General ME/CFS news
  17. Gecko
    Post

    United Kingdom: Sheffield ME & Fibromyalgia Group News

    Livestream not quite as successful as previously, but I've uploaded the talks and Q&A session to YouTube. There are still a few pauses in the...
    Post by: Gecko, May 23, 2019 in forum: News from organisations
  18. Gecko
    Post

    United Kingdom: Sheffield ME & Fibromyalgia Group News

    Same, we'll get it up on YouTube afterwards, not sure what's gone wrong :(
    Post by: Gecko, May 23, 2019 in forum: News from organisations
  19. Gecko
    Post

    United Kingdom: Sheffield ME & Fibromyalgia Group News

    Live now, direct link to livestream: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/videos/436526033841719/ I'll try to check back...
    Post by: Gecko, May 23, 2019 in forum: News from organisations
  20. Gecko
    Post

    United Kingdom: Sheffield ME & Fibromyalgia Group News

    Boost, happening today. Livestream from 2:30pm on this facebook page: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/ I'll endeavour to...
    Post by: Gecko, May 23, 2019 in forum: News from organisations
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