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  1. Tom Kindlon
    Thread

    (No discussion) E-letters submitted to JNNP replying to White et al. "Anomalies in the review process & interpretation of the evidence in the NICE..."

    Moderator note: This thread is for collecting copies of letters submitted as rapid responses to the article discussed here: Anomalies in the...
    Thread by: Tom Kindlon, Aug 10, 2023, 11 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  2. Tom Kindlon
    Thread

    Trial Report Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue, 2023, Hersche

    Free fulltext: https://www.tandfonline.com/doi/full/10.1080/09638288.2023.2242783 Occupational therapy-based self-management education in persons...
    Thread by: Tom Kindlon, Aug 10, 2023, 6 replies, in forum: Long Covid research
  3. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    A short blogpost by a participant: DECODEME STUDY https://lizakarlewriter.wordpress.com/2023/08/04/decodeme-study/
    Post by: Tom Kindlon, Aug 9, 2023 in forum: Recruitment into current ME/CFS research studies
  4. Tom Kindlon
    Post

    Long Covid in the media and social media 2023

    Long covid an 'ongoing and active issue' in Ireland with 200 symptoms https://www.irishexaminer.com/news/spotlight/arid-41200315.html I think...
    Post by: Tom Kindlon, Aug 9, 2023 in forum: Long Covid news
  5. Tom Kindlon
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    I remember seeing a copy of the supposed final Gibson Parliamentary inquiry report. However the final version that came out the next day had...
    Post by: Tom Kindlon, Aug 9, 2023 in forum: News from organisations
  6. Tom Kindlon
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    I wasn’t told directly. A UK advocate posted it to a group for group leaders.
    Post by: Tom Kindlon, Aug 9, 2023 in forum: News from organisations
  7. Tom Kindlon
    Post

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

    I think a good paper to cite on this point is: PACE investigators' response is misleading regarding patient survey results Karen D Kirke. J Health...
    Post by: Tom Kindlon, Aug 8, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  8. Tom Kindlon
    Post

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

    Yes, I remember it was similar with the ME Action UK response where it hadn't been published online on that date but a later date. It may be the...
    Post by: Tom Kindlon, Aug 8, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  9. Tom Kindlon
    Post

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

    Well done to Dom Salisbury, Robert H Saunders & Jonathan CW Edwards on their e-letter, "Shortcomings in the commentary by White et al." which has...
    Post by: Tom Kindlon, Aug 8, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  10. Tom Kindlon
    Thread

    Review Research Insights to Long-COVID (also ME/CFS), 2023, Werner

    Free fulltext: https://urfpublishers.com/open-access/research-insights-to-long-covid.pdf Journal Journal of Advanced Biomedical Engineering...
    Thread by: Tom Kindlon, Aug 8, 2023, 4 replies, in forum: Long Covid research
  11. Tom Kindlon
    Thread

    Review The Microbiome in Post-Acute Infection Syndrome (PAIS), 2023, Guo et al

    https://www.sciencedirect.com/science/article/pii/S2001037023002775 Computational and Structural Biotechnology Journal Available online 5 August...
    Thread by: Tom Kindlon, Aug 8, 2023, 2 replies, in forum: ME/CFS research
  12. Tom Kindlon
    Post

    Severe ME Day, August 8 2023 and Severe ME week

    Post by: Tom Kindlon, Aug 8, 2023 in forum: General ME/CFS news
  13. Tom Kindlon
    Post

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

    Post by: Tom Kindlon, Aug 7, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  14. Tom Kindlon
    Post

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

    Association Chairperson, Vera Kindlon, was one of 55 co-authors of this letter "Global ME community is unified in firm support for the NICE 2021...
    Post by: Tom Kindlon, Aug 7, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  15. Tom Kindlon
    Post

    A general thread on the PACE trial!

    Post by: Tom Kindlon, Aug 6, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  16. Tom Kindlon
    Post

    Australia: News from Emerge Australia

    From their latest newsletter: New online resources for Health Professionals Emerge Australia's Education team has been working hard over the...
    Post by: Tom Kindlon, Aug 5, 2023 in forum: News from organisations
  17. Tom Kindlon
    Post

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    From: NIH MECFS Information <NIH-MECFS_INFORMATION at LIST.NIH.GOV> On Behalf Of NIH MECFS Information List Sent: Thursday, August 3, 2023 3:02 PM...
    Post by: Tom Kindlon, Aug 3, 2023 in forum: News from organisations
  18. Tom Kindlon
    Thread

    "Caring for people with ME/CFS who are bedbound" (2023)

    "Caring for people with ME/CFS who are bedbound" (2023) 8-page fact sheet from Emerge Australia...
    Thread by: Tom Kindlon, Aug 2, 2023, 1 replies, in forum: Resources
  19. Tom Kindlon
    Post

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

    Sounds good. Thanks for doing it.
    Post by: Tom Kindlon, Aug 1, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  20. Tom Kindlon
    Post

    Severe ME Day, August 8 2023 and Severe ME week

    One week to go. Hopefully lots will use it as an opportunity to raise awareness and understanding. Some severely affected patients may be...
    Post by: Tom Kindlon, Aug 1, 2023 in forum: General ME/CFS news
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