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  1. Trish

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    A truly scary situation for health in the USA.
  2. Trish

    Measuring Activity Patterns

    Published in BMC Medicine, 18th September 2024 Diurnal timing of physical activity and risk of colorectal cancer in the UK Biobank Michael J. Stein, Hansjörg Baurecht, Patricia Bohmann, Béatrice Fervers, Emma Fontvieille, Heinz Freisling, Christine M. Friedenreich, Julian Konzok, Laia...
  3. Trish

    The Concept of ME/CFS, 2024, Edwards

    We have some members only polls on symptoms here, here, here and here and more.
  4. Trish

    The Concept of ME/CFS, 2024, Edwards

    Dr Bateman gave a talk to doctors in 2019 about ME including a section on orthostatic intolorance (the inability to be upright). The video and discussion are on this thread: Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda...
  5. Trish

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    More discussion on this thread and others with microclots tag. Challenging the current hypothesis that thrombosis is responsible for the post-COVID-19 condition, 2024, Carson, Davey Smith, Garner et al
  6. Trish

    Opinion Challenging the current hypothesis that thrombosis is responsible for the post-COVID-19 condition, 2024, Carson, Davey Smith, Garner et al

    For more discussion of microclots go to this thread: The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS
  7. Trish

    The Concept of ME/CFS, 2024, Edwards

    Threads on the Dubbo study: Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study, 2006, Hickie, Lloyd et al Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al
  8. Trish

    United Kingdom - Suffolk and North East Essex ME/CFS services

    There isn't a person called admin who will respond to this. If you want to start a new thread, you are free to do so. If you want some specific posts moved from this thread to a new thread, please use the contact moderators button on those posts and explain in the pop up box what you want done.
  9. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    I haven't read most of it, just skimmed and copied headings.
  10. Trish

    Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

    Not my experience. Rapid fatiguablity, pain, increased symptoms during and after exertion. Exertion intolerance. My muscles do not function normally. PEM is a delayed worsening of all symptoms additional to this.
  11. Trish

    Miranda Hart - British comedian

    Despite the problems with her book, I wish Miranda well, and hope she's not over exerting herself.
  12. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    That bit puzzled me too. More about PROBE: . 1992 Aug;1(2):113-9. doi: 10.3109/08037059209077502. Prospective randomized open blinded end-point (PROBE) study. A novel design for intervention trials. Prospective Randomized Open Blinded End-Point L Hansson 1, T Hedner, B Dahlöf Since it would...
  13. Trish

    United Kingdom - Suffolk and North East Essex ME/CFS services

    We had home visits from our local ME service about 13 years ago. It was the same OT who ran the outpatient clinic groups recommending the same diary keeping and add a new activity each week. Completely useless.
  14. Trish

    Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

    From reading about others' experiences, I think a few people can increase strength in some muscles by very slow and careful focused exercises using specific muscle groups, provided the exertion involved doesn't exceed their 'energy envelope'. So they might be able to improve their hand grip...
  15. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    I've copied rather a lot, and not necessarily the 'best bits'. I intend to go back over it later to weed out a lot of words and home in on bits particularly relevant to clinical trials of psych and behavioural interventions for ME/CFS. This was linked on the forum via a Cochrane article...
  16. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    Ha, yes, you can see from the bits I've highlighted so far that I'm looking for the smoking gun.
  17. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    Continued from above page 37 2.3 Good clinical trials are collaborative and transparent 2.3.1 Working in partnership with people and communities 2.3.2 Collaboration among organizations 2.3.3 Transparency 2.4 Good clinical trials are designed to be feasible for their context 2.4.1 Setting and...
  18. Trish

    International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

    A thread on this document: Guidance for best practice for clinical trials, World Health Organisation, 2024
  19. Trish

    News from Cochrane

    Discussion of this document has been moved to a new thread: Guidance for best practice for clinical trials, World Health Organisation, 2024
  20. Trish

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    Moved from News from Cochrane https://iris.who.int/bitstream/handle/10665/378782/9789240097711-eng.pdf?sequence=1 page 8 The Technical Advisory Group (TAG) for Development of Best Practices for Clinical Trials was constituted through a public call for nominations. 16 names including Karla...
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