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  1. Tom Kindlon
    Post

    Crowdfunding: Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023

    I just gave my second (small) donation. Fingers crossed.
    Post by: Tom Kindlon, Apr 27, 2023 in forum: Fundraising
  2. Tom Kindlon
    Thread

    Self-Tracking to Do Less: An Autoethnography of Long COVID That Informs the Design of Pacing Technologies, 2023, Homewood

    Sarah Homewood Department of Computer Science, University of Copenhagen sfh@di.ku.dk Free fulltext:...
    Thread by: Tom Kindlon, Apr 26, 2023, 0 replies, in forum: Long Covid research
  3. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Note: if I say things like recruitment might not reach the target, this doesn’t mean I’m criticising the DecodeME team. Indeed they have been by...
    Post by: Tom Kindlon, Apr 25, 2023 in forum: Recruitment into current ME/CFS research studies
  4. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    For some things, people might hold off and see if other people come forward and only then do it close to the deadline if they saw it was...
    Post by: Tom Kindlon, Apr 25, 2023 in forum: Recruitment into current ME/CFS research studies
  5. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Yes but around 3000 questionnaires filled in over the last 4 months. And only around half go on to give DNA samples. So around 375 DNA samples a...
    Post by: Tom Kindlon, Apr 25, 2023 in forum: Recruitment into current ME/CFS research studies
  6. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Indeed. I’m just disappointed: I have been trying quite hard on Twitter for the last while retweeting daily (or almost daily) tweets. It is now...
    Post by: Tom Kindlon, Apr 24, 2023 in forum: Recruitment into current ME/CFS research studies
  7. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Just repeating what I posted elsewhere today: This study has funding to analyse the DNA of 5000 people with ME/#CFS following Covid. At the time...
    Post by: Tom Kindlon, Apr 24, 2023 in forum: Recruitment into current ME/CFS research studies
  8. Tom Kindlon
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    “Between its full launch date of September 12, 2022 and a data freeze performed on December 19, 2022, DecodeME recruited 17,074 female or male...
    Post by: Tom Kindlon, Apr 24, 2023 in forum: Recruitment into current ME/CFS research studies
  9. Tom Kindlon
    Post

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    This study has funding to analyse the DNA of 5000 people with ME/#CFS following Covid. At the time of this analysis, only 380 had completed the...
    Post by: Tom Kindlon, Apr 24, 2023 in forum: ME/CFS research
  10. Tom Kindlon
    Post

    News from Germany

    “German Bundestag – CDU/CSU presses for ME/#CFS progress”. This gives more details than the English news report I saw on the detailed application...
    Post by: Tom Kindlon, Apr 23, 2023 in forum: Regional news
  11. Tom Kindlon
    Post

    Socioeconomic determinants of ME/CFS in Norway: a registry study, Hilland and Anthun, 2023

    My impression from say dealing with enquiries is there could be underdiagnosis of ME/CFS in Ireland in lower socio-economic groups. Possibly a...
    Post by: Tom Kindlon, Apr 23, 2023 in forum: ME/CFS research
  12. Tom Kindlon
    Post

    Crowdfunding: Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023

    I’ve just donated and shared on Twitter (two accounts), Mastodon, Instagram, Tumblr and Facebook account (personal profile and my ME page). Have...
    Post by: Tom Kindlon, Apr 20, 2023 in forum: Fundraising
  13. Tom Kindlon
    Post

    Dr Jonathan Kerr

    https://www.gmc-uk.org/doctors/3257111 Registration and licensing history (since 20 October 2005)Registration and licensing history From To...
    Post by: Tom Kindlon, Apr 19, 2023 in forum: UK clinics and doctors
  14. Tom Kindlon
    Post

    Dr Jonathan Kerr

    Very sad. I had conversations with him when organising for him to speak at Irish ME/CFS Association talks in Dublin and Waterford in 2006 for...
    Post by: Tom Kindlon, Apr 19, 2023 in forum: UK clinics and doctors
  15. Tom Kindlon
    Post

    Healthcare Hubris - blogs on the biopsychosocial model by Joanne Hunt

    For what it's worth, this is a post I've written about this in case of interest to anyone who mightn't have read it yet:...
    Post by: Tom Kindlon, Apr 18, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  16. Tom Kindlon
    Thread

    (CDC) Chronic Pain Among Adults — United States, 2019–2021, 2023, Rikard et al

    https://www.cdc.gov/mmwr/volumes/72/wr/mm7215a1.htm Chronic Pain Among Adults — United States, 2019–2021 Weekly / April 14, 2023 / 72(15);379–385...
    Thread by: Tom Kindlon, Apr 18, 2023, 0 replies, in forum: ME/CFS research
  17. Tom Kindlon
    Post

    How payments from insurance companies might potentially bias proponents of CBT and/or GET for ME/CFS (such as the PACE Trial investigators)

    Post by: Tom Kindlon, Apr 17, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  18. Tom Kindlon
    Post

    International: IACFS/ME - International Association for CFS/ME, IACFSME

    Recording of March 31, 2023 IACFS/ME Business Meeting [MEDIA]
    Post by: Tom Kindlon, Apr 15, 2023 in forum: News from organisations
  19. Tom Kindlon
    Post

    Open Survey: Assessing Attitudes Toward Case Definitions: Consensus Building Amongst Researchers, Physicians, Patients, and Activists - Lenny Jason

    I forgot to mention the Bansal criteria in my submission. He uses symptom scoring. He proposes a threshold of 8+ out of 13 for clinical criteria...
    Post by: Tom Kindlon, Apr 5, 2023 in forum: Recruitment into current ME/CFS research studies
  20. Tom Kindlon
    Post

    Open Survey: Assessing Attitudes Toward Case Definitions: Consensus Building Amongst Researchers, Physicians, Patients, and Activists - Lenny Jason

    Here are the comments I put at the end, for what they are worth. If you haven't submitted yours yet, it may be better not to read them if you...
    Post by: Tom Kindlon, Apr 5, 2023 in forum: Recruitment into current ME/CFS research studies
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