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  1. NelliePledge

    WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

    Well NICE could have just put in a straight redirect to the new guidelines. But it’s good at least for a while that people are told the old ones are defunct. In my old job we wouldn’t have still had people going through the landing page 12 months later. but as we’ve seen this new guideline...
  2. NelliePledge

    Identification of biopsychological trait markers in functional neurological disorders 2022 Weber, Aybek et al

    So they are saying the reduced subcortical volumes is not indicative of any physical issue it’s because of “predisposing trait factors” so linking it back personality traits…….
  3. NelliePledge

    Vocal biomarker predicts fatigue in people with COVID-19: results from the prospective Predi-COVID cohort study 2022 Elbéji et al

    when regularly pushing myself over limits eg when I was working part time I would get to a point in phone meetings that my voice would become croaky. Then later (10 15 minutes?) my energy would be drained to the point I couldn’t concentrate any more. So I would say to people in my team if my...
  4. NelliePledge

    WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

    So NICE kept the url for the old 2007 CFS/ME guidelines but now it just acts as a landing page with no content just a redirect to the live 2021 ME/CFS guidelines. which means any links in papers referencing the old guidelines take people to the new. So anyone persisting in referring to the old...
  5. NelliePledge

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    There’s literally been nothing official posted about this in the whole of 2022. It’s as transparent as a concrete block
  6. NelliePledge

    Closed UK: DecodeME updates, was recruitment thread.

    Good thinking. If I can’t get mine done next week I’ll wait until January
  7. NelliePledge

    Closed UK: DecodeME updates, was recruitment thread.

    @Andy Early October can’t remember exactly when but i started Covid symptoms 10th and tested positive 11th it was some time the previous week the kit arrived.
  8. NelliePledge

    Closed UK: DecodeME updates, was recruitment thread.

    I haven’t done my test yet as I was ill with covid when it arrived. As they have this backlog I decided I didn’t need to rush myself to get it done immediately now I’m ok as I have a couple of other things I needed to get done. It will probably get posted start of next week (strikes...
  9. NelliePledge

    United Kingdom: ME Association news

    I think it’s absolutely right to get this information out to Practices. Its one element of getting change to happen, giving GPs sensible information about ME and highlighting the new guidelines, education package. It may change things a bit for some people. EG People can ask their GP if...
  10. NelliePledge

    Memory problems

    Yes @DokaGirl acronyms using initials are an infuriating sub set of jargon that groups/professions tend to fall into using without realising they are doing it and is a pretty big communication failure in my opinion.
  11. NelliePledge

    Website 'neurosymptoms.org' founded by Jon Stone, funded by the Scottish Government promoting Recovery Norge

    Nauseating attitude demonstrated in that first sentence How about a rewrite from the patient perspective. It is a Tuesday morning you had a two hour journey and half an hour spent parking and finding your way round the hospital in time for your 11.30 appointment. You are already exhausted by...
  12. NelliePledge

    Covid-19 vaccination experiences

    Now 8 days since I had mine punched arm only no symptoms. ME wise I’ve been ok. The jab hasn’t affected my gradual return to my normal after my covid infection
  13. NelliePledge

    ME/CFS services in the United Kingdom

    Ah but it’s ok when they tell us to focus on symptoms just not ok if we decide for ourselves because they know more about it than we do obviously
  14. NelliePledge

    Long Covid in the media and social media 2022

    https://www.bbc.co.uk/news/uk-england-kent-63651536 Teen with Long Covid misses two years of school
  15. NelliePledge

    Long Covid - where is the psychosomatics ?

    They have to come out fighting as the psychosomatic by stealth approach of PACE has lost or at least is in the process of losing its dominance of the agenda. It seems ironically Fink and the radical wing of Psychosomatics have not been put under the same pressure from authority so likely it...
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