Recent Activity

Activity stream for all registered members at Science for ME.

  1. Sean liked bobbler's post in the thread : TV casting call for people living with ME/CFS.

    I find in this situation using the term with these people of ‘you are out of date and working based on old and harmful guidelines and...

    Jun 13, 2024 at 1:56 AM
  2. Sean liked Tia's post in the thread : TV casting call for people living with ME/CFS.

    It's a bit like saying we're looking for a person with celiac disease to come on our programme about eating bread. There'll always be...

    Jun 13, 2024 at 1:55 AM
  3. Sean liked Kitty's post in the thread : TV casting call for people living with ME/CFS.

    Dunno, but I reckon the cross-country sitting down would be the best sport to train for.

    Jun 13, 2024 at 1:55 AM
  4. forestglip liked Colleen Steckel's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.

    While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to...

    Jun 13, 2024 at 1:53 AM
  5. forestglip attached a file to the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.

    The comparison is astounding. NIH graph: [ATTACH] Graph created from raw data: [ATTACH]

    13_Figure3a.png 17_AreaGraph_HardTaslkChoices.png Jun 13, 2024 at 1:52 AM
  6. alex3619 replied to the thread : TV casting call for people living with ME/CFS.

    At one point there was a stat often quoted that half of all CFS (don't think it was ME) patients who recovered relapse at some point,...

    Jun 13, 2024 at 1:51 AM
  7. Sean liked forestglip's post in the thread Open Medicine Foundation (OMF).

    "Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients" [MEDIA] Description from YouTube:...

    Jun 13, 2024 at 1:50 AM
  8. alex3619 replied to the thread : TV casting call for people living with ME/CFS.

    Or ice skating for the over 100s in Costa Rica.

    Jun 13, 2024 at 1:48 AM
  9. Sean liked Jaybee00's post in the thread Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission.

    https://www.medpagetoday.com/meetingcoverage/eular/110610 CAR-T Treatment Continues to Astonish in Rheumatologic Diseases

    Jun 13, 2024 at 1:48 AM
  10. Sean liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.

    Have heard from Cochrane CEO and replied. Will post tomorrow

    Jun 13, 2024 at 1:47 AM
  11. Sean liked rvallee's post in the thread USA: Centers for Disease Control (CDC) - Post Covid Conditions: Interim Guidance, June 2021, updated June 2024.

    Pretty weak. I saw the CDC tweet about the NASEM report, which has loads of references to ME/CFS, PEM and the rest. Damn do they move...

    Jun 13, 2024 at 1:47 AM
  12. alex3619 liked Joan Crawford's post in the thread : TV casting call for people living with ME/CFS.

    Dear Joan, I’m contacting you from Electric Robin, an award-winning UK-based creative production company. You can find out more about...

    Jun 13, 2024 at 1:47 AM
  13. Sean liked MrMagoo's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.

    I know what I was trying to think of, but couldn’t. Emotional Labour? Mental load? Mental load is usually described as the...

    Jun 13, 2024 at 1:47 AM
  14. Michelle liked rvallee's post in the thread Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+.

    They're writing a paper... about having done a study? Which is already published? Which they recognize was not statistically...

    Jun 13, 2024 at 1:47 AM
  15. Sean liked Colleen Steckel's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.

    While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to...

    Jun 13, 2024 at 1:46 AM
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