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  1. Gecko
    Post

    Safe Cell Phone for severe patient

    Unfortunately it's much less powerful, and can't dim phone screens nearly as much as Twilight can on Android, but still worth using if you have an...
    Post by: Gecko, Dec 13, 2023 in forum: Home adaptations, mobility and personal care
  2. Gecko
    Post

    Safe Cell Phone for severe patient

    I have found the Twilight app on Android to be hugely helpful for managing dimming. This is not available on iPhones. Twilight allows you to make...
    Post by: Gecko, Dec 12, 2023 in forum: Home adaptations, mobility and personal care
  3. Gecko
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Could someone DM me the full PDF too please? Thanks! (Edit: received thank you)
    Post by: Gecko, Jul 12, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  4. Gecko
    Post

    Report on #SpeakUp project, to help improve health and social care provision for people with ME/CFS and Fibromyalgia in Sheffield

    Hey @NelliePledge - always okay to tag me :) Sheffield ME and Fibromyalgia Group will be asking Sheffield Healthwatch to share with other...
    Post by: Gecko, Dec 8, 2022 in forum: UK clinics and doctors
  5. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    All stuff we're working on
    Post by: Gecko, Apr 9, 2022 in forum: Advocacy Projects and Campaigns
  6. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    Heya @Milo - the team is just finalising some things to try and make the most out of the launch so that it creates some real waves - hopefully...
    Post by: Gecko, Apr 9, 2022 in forum: Advocacy Projects and Campaigns
  7. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    Final call for applications. Deadline is midday tomorrow (Tuesday 11th Jan). psp-me.co.uk/take-part
    Post by: Gecko, Jan 10, 2022 in forum: Advocacy Projects and Campaigns
  8. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    I'll add it there, makes sense to be in both places tbh!
    Post by: Gecko, Oct 25, 2021 in forum: Advocacy Projects and Campaigns
  9. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    There's a button just above the survey that allows you to do this! Here's the direct link to PDF of questions....
    Post by: Gecko, Oct 25, 2021 in forum: Advocacy Projects and Campaigns
  10. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    Yeah I think we're in a weird situation. I doubt most illnesses have to counter the crap research we've been subjected to, and the James Lind...
    Post by: Gecko, Oct 25, 2021 in forum: Advocacy Projects and Campaigns
  11. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    On a more personal note - really looking forward to seeing the discussion of these questions here. There are a couple I will definitely choose for...
    Post by: Gecko, Oct 25, 2021 in forum: Advocacy Projects and Campaigns
  12. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    Survey now live! Take part here: https://www.psp-me.co.uk/take-part/ Three ways to take part: Online: Visit the website to take the survey...
    Post by: Gecko, Oct 25, 2021 in forum: Advocacy Projects and Campaigns
  13. Gecko
    Post

    UK: Priority Setting Partnership for ME/CFS

    Next survey launching this coming Monday 25th Oct. [MEDIA]
    Post by: Gecko, Oct 22, 2021 in forum: Advocacy Projects and Campaigns
  14. Gecko
    Post

    Design, validation and implementation of the post-acute (long) COVID-19 quality of life (PAC-19QoL) instrument, 2021, Jandhyala

    Hmm yeah not sure if "Title and operational definition" means that is the actual language they use in the instrument or another title they've...
    Post by: Gecko, Sep 30, 2021 in forum: Long Covid research
  15. Gecko
    Post

    Design, validation and implementation of the post-acute (long) COVID-19 quality of life (PAC-19QoL) instrument, 2021, Jandhyala

    Can anyone find the actual list of questions for the final instrument? Can't tell if I'm just brain fog failing to find or if they've chosen to...
    Post by: Gecko, Sep 30, 2021 in forum: Long Covid research
  16. Gecko
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    Yes, petition has been sent to the ones we have contact with. And I did chat to Mark before we launched this petition, he's an excellent advocate...
    Post by: Gecko, Aug 22, 2021 in forum: Petitions
  17. Gecko
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    Checking with our social team - probs easier to contact on twitter but if they can't will email. And yes I'll contact Sten.
    Post by: Gecko, Aug 21, 2021 in forum: Petitions
  18. Gecko
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    Have done already :) Good suggestion though, they're a great org. Any more ideas feel free to tag me and will send more emails!
    Post by: Gecko, Aug 20, 2021 in forum: Petitions
  19. Gecko
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    Aimed more at individuals but if you want to sign as an org more than happy for you to put in the organisations name and if so I'd email...
    Post by: Gecko, Aug 19, 2021 in forum: Petitions
  20. Gecko
    Post

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    If NICE don't publish the new guideline we are stuck with the old one indefinitely. Our community needs to see it. NICE have played right into the...
    Post by: Gecko, Aug 19, 2021 in forum: Petitions
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