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  1. Hutan

    United Kingdom: ME Association governance issues

    2018 post by Sarah. Click on the arrow to read more.
  2. Hutan

    United Kingdom: ME Association governance issues

    That radio interview was in 2010 and so perhaps Findley has learned something since, but he was running a CFS diagnostic and management clinic in 2001 when he wrote the letter about Sophia. So, if he was paying any attention at all, he definitely should have known better by 2010. Maybe...
  3. Hutan

    United Kingdom: ME Association governance issues

    @Russell Fleming, can you please explain why Professor Findlay was thought to be an appropriate person to be patron of the MEA. It's extremely disappointing when the organisations set up to promote the interests of people with ME/CFS and who take funds from people with ME/CFS to do that, act in...
  4. Hutan

    Interview with Dr. John Greally on his ME/CFS research he is fundraising for (ME/CFS advocate Liz Carlson also talks)

    What a strange framing of ME/CFS. Sort of accurate but so open to various interpretations. Dr John Greally seemed to talk about ME/CFS carefully and accurately, so this is particularly odd. The kernl site doesn't make things clearer. There's talk of hundreds of genomes in some places and...
  5. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A post about some research on blood clotting in Long Covid has been moved here: Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al
  6. Hutan

    News from South Africa

    A research team from Stellenbosch University have been looking at blood clotting in Long Covid:Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al
  7. Hutan

    Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al

    https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7 Open Access Etheresia Pretorius, Mare Vlok, Chantelle Venter, Johannes A. Bezuidenhout, Gert Jacobus Laubscher, Janami Steenkamp & Douglas B. Kell Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of...
  8. Hutan

    Brain fog, cognitive dysfunction

    Several posts have been moved to a new thread: Compression Garments
  9. Hutan

    Compression Garments

    We also have a Members Only thread on a related topic: Compression Socks any recommendations in the U.S.? And discussions about compression socks.
  10. Hutan

    Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With [POTS], 2021, Bourne et al

    A number of posts about compression garments have been moved here: Compression Garments
  11. Hutan

    Interview with Dr. John Greally on his ME/CFS research he is fundraising for (ME/CFS advocate Liz Carlson also talks)

    It's nearly an hour long, and it's pitched at people with a pretty low level of scientific understanding (e.g. a bit of time is spent on 'what is a gene?'), so here's a summary: Raelan Agle and Liz Carlson are ME/CFS advocates. Liz has a website called healwithliz.com They are speaking with Dr...
  12. Hutan

    Continuity in general practice as predictor of mortality, acute hospitalisation, and use of out-of-hours care..., 2021, Sandvik, Hetlevik, et al

    Now I've read the paper. I do think continuity of care is a good thing, so I can understand why the researchers might want to produce some evidence in support of that. And there were some adjustments - for the patient's level of education, for their level of health (but not mental health)...
  13. Hutan

    Continuity in general practice as predictor of mortality, acute hospitalisation, and use of out-of-hours care..., 2021, Sandvik, Hetlevik, et al

    I haven't read the paper, but surely assuming a long association with one GP as being causal for lower mortality and the rest is way too simplistic? Thinking about what might cause someone to not have a long association - * housing insecurity - people who own their own home will tend to have...
  14. Hutan

    Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study, 2021, Bourke, White et al

    @Action for M.E., could you please explain how a study done by PD White, and on central sensitisation, was funded by an ME/CFS patient charity? Given White's history, no ME/CFS study that includes him as an investigator can be trusted. He simply has too much at stake to achieve the required...
  15. Hutan

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    And of course, I should have said: This whole construct of agreeable people and disagreeable people is a nonsense. Because you can't properly categorise people on the basis of a handful of questions that can be interpreted in different ways that are answered at one point of time. And, very...
  16. Hutan

    Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study, 2021, Bourke, White et al

    White, out of 'retirement' to poke people with FM and CFS until they say it hurts. Not surprised. I'm not even sure about this idea that people with ME/CFS have lower pain thresholds, let alone the CSS interpretation overlaid on that idea. From memory, the experimental results, even when done...
  17. Hutan

    Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

    After treatment, the brainwashing group did have a slight reduction in reported cannabis use, but they were still using twice the amount used by the saline injection placebo group, and 4 times the amount used by the control group. And yes, re the opioids, we know the scale is number of pills...
  18. Hutan

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    ha! Agreeable? You’re More Likely to Benefit From Placebo Your personality affects your likelihood to experience placebo effects. https://www.psychologytoday.com/us/blog/you-illuminated/201302/agreeable-you-re-more-likely-benefit-placebo Whereas I'd say the people scoring high on the...
  19. Hutan

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    I wonder if showing a relationship between 'agreeableness' and subjective improvements from placebo (or treatments that are essentially placebos) might help? Agreeableness is one of the Big 5 personality traits. So, there are tools to measure it. If it could be shown that more agreeable...
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