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  1. Hutan

    Thesis Distress and coping in ME/CFS: Understanding the role of perfectionism and self-compassion, 2022, Houston

    The literature on perfectionism in ME/CFS is weak and unconvincing, as far as the idea that perfectionism is more common in ME/CFS goes. It's another one of those ideas that BPS people so desperately want to be true but which is not evidence-based. Check out some of the the threads tagged with...
  2. Hutan

    News from South-East Asia

    This article is a bit old - May 2022 - but it gives an idea of the situation in Thailand regarding Long Covid. Long COVID clinics mushroom in Thailand as survivors tackle after-effects
  3. Hutan

    Recent Advancements on Long COVID in China: A Narrative Review, 2023, Tang et al

    It looks as though Long Covid care in China is just as dire as anywhere.
  4. Hutan

    Recent Advancements on Long COVID in China: A Narrative Review, 2023, Tang et al

    https://www.dovepress.com/recent-advancements-on-long-covid-in-china-a-narrative-review-peer-reviewed-fulltext-article-IJGM Abstract: The COVID-19 pandemic is a huge public health crisis in the 21st century. In addition to the acute symptoms, a considerable proportion of patients worldwide have...
  5. Hutan

    A one-year follow-up study of systematic impact of long COVID symptoms ... in Shanghai, China, 2023, Cai et al

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10281439/ Long COVID hinders people from normal life and work, posing significant medical and economic challenges. Nevertheless, comprehensive studies assessing its impact on large populations in Asia are still lacking. We tracked over 20,000...
  6. Hutan

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    We've seen these papers with a cast of dozens before. It's as if they are doing science by a popularity vote. 'We must be right because we have 51 people who are prepared to put their name to this'. What's a good name for that sort of "science"? Before anyone suggests, that's a bit 'pot...
  7. Hutan

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    That is a nice article @oldtimer. But, I quibble over this: I think I've mentioned before how, when visiting some people in a village in a very remote part of the highlands of Mindanao, I met a young man who had, completely uninstructed in formal science (in fact he'd never been to school)...
  8. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks @obeat. I'll send you a message re where we are at with those.
  9. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Kia ora to M.E. Awareness in New Zealand for signing the letter and supporting the petition. Thank you. @Robert 1973, thank you very much for offering to help. :) Speaking generally, we haven't yet contacted all the organisations and people we can think of. We are waiting for replies or...
  10. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Muchas gracias CONFESQ in Spain for your support! That brings the number of ME/CFS organisations supporting the open letter to 29. We would love to get more, so, if you have an association with an ME/CFS or Long Covid organisation, it would be terrific if you could inform them about the open...
  11. Hutan

    News from Canada

    That's fantastic @rvallee, very encouraging to hear this. I clicked through to the surveys, it looks as though only people in Quebec can respond as it asks for your region in Quebec. I hope that INESSS receives some praise.
  12. Hutan

    News from Canada

    Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review 2023,Hussein et al
  13. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Tack! RME Kronoberg Blekinge in Sweden for your support, it is much appreciated.
  14. Hutan

    OpenSAFELY Wins CogX Award for Open Science Innovation, 2023, Nick DeVito

    @CRG, do you have any contact with the people involved, or any idea about the cost of applying this technology to large health data sources?
  15. Hutan

    Cognitive rehabilitation and aerobic exercise for cognitive impairment in people with progressive MS, 2023, Prof Anthony Feinstein et al

    Information on the Symbol Digit Modalities Test: "Scoring involves summing the number of correct substitutions within the 90 second interval (max = 110)." There's a paywall, so I can't be sure about the unit of measure. But a higher score on the SDMT indicates higher processing speed. The...
  16. Hutan

    News from Austria and Switzerland

    We have a thread on the WE&ME Foundation here: Austria: WE&ME Foundation (formerly TEMPI-Stiftung, TEMPI-Foundation)
  17. Hutan

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    It's been similar with my son, with a patchwork of rest, home learning, and part-time school from age 13. Some years he managed full course loads, but never full-time at school, and approaches were constantly changing with opportunities and health. It became much easier for him to have a full...
  18. Hutan

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    Copying a comment I made back in 2017 on the Smile Trial over on Phoenix Rising - noting the missing school attendance data at 12 months, and the lack of clarity over how home tuition was quantified.
  19. Hutan

    Closed UK: DecodeME updates, was recruitment thread.

    Ah, thanks. I did think that funding might be a significant factor in the decision-making. I guess things often cost more than expected, and that's certainly the case in the current economy.
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