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  1. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I agree that publicly discussing a person and their qualifications and views feels uncomfortable. But Kay is not on the IAG, she is on the review writing team. She is the only patient on the review writing team and the ME/CFS community knew very little about her. I think it was reasonable to...
  2. Hutan

    News from Doctors with ME

    This is the reference given for that: 4. Carruthers BM, van de Sande MI, De Meirleir KL, et al. 2012. Myalgic encephalomyelitis – adult & paediatric: International consensus primer for medical practitioners. Available at: https://www.me-...
  3. Hutan

    News from Australia

    Yes, a very good article to share with the cricket fans in your life.
  4. Hutan

    Article: Anti-autoantibody drug helps with long COVID, 2021

    Article: Anti-autoantibody drug helps with long COVID, 2021 Thanks for the link to the video about G-protein coupled receptors @wastwater, very helpful.
  5. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    It's my understanding that the planned return to full-time work in 2019 did not eventuate. She retired from the Navy in 2021 on medical discharge...
  6. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    (Sorry, I first posted this on the FOI thread, but realised it would be off-topic there.) When we see the brazen attempts to influence the NICE Guideline, it makes me even more concerned about the Cochrane Exercise therapy review development process. Given the prevailing views about ME/CFS in...
  7. Hutan

    Aphaeresis/ Apheresis (for removal of microclots)

    I don't see how that is a problem. With Rituximab, some of the participants were convinced that they had improved as a result of the treatment too - but some of them, actually quite a lot of them, were on the placebo. It's ok if patients develop a theory as to what treatment they are on. Of...
  8. Hutan

    Aphaeresis/ Apheresis (for removal of microclots)

    It's not a matter of getting in trouble, and of course I'm not doing the treatments and I don't know what difficulties there might be in blinding. I'm not suggesting the difficulties are trivial because I don't know. It's just that if people understand how important it is to have blinded...
  9. Hutan

    Aphaeresis/ Apheresis (for removal of microclots)

    Thanks for the update @SNT Gatchaman I do hope that everyone who can will push back against any suggestion that this situation is special and that double-blinded RCTs either won't work or aren't needed. Most people with Long Covid or ME/CFS around the world will not have a hope of getting...
  10. Hutan

    Co-Exposure of Cardiomyocytes to IFN-γ and TNF-α Induces Mitochondrial Dysfunction and Nitro-Oxidative Stress...., 2021, Nunes et al

    Another study, 2011 Effects of Trypanosoma cruzi infection on myocardial morphology, single cardiomyocyte contractile function and exercise tolerance in rats They infected rats with Chagas, and later had them run to exhaustion. 48 hours after the exercise, they took muscle cells and...
  11. Hutan

    Co-Exposure of Cardiomyocytes to IFN-γ and TNF-α Induces Mitochondrial Dysfunction and Nitro-Oxidative Stress...., 2021, Nunes et al

    It is not clear to me exactly what they are saying about the timeline here, but it seems that stimulation of the cells with IFN-y reduced mitochondrial membrane potential. This would result in the mitochondria not being able to produce energy. Maybe this would fit with PEM?
  12. Hutan

    Co-Exposure of Cardiomyocytes to IFN-γ and TNF-α Induces Mitochondrial Dysfunction and Nitro-Oxidative Stress...., 2021, Nunes et al

    Thanks for posting Andy. I thought this was interesting, the findings seem similar to what I remember researchers have reported about the mitochondria of people with ME/CFS. I also remember someone, I think Ron Davis, reporting that the epigenetic profile of people with ME/CFS looked like that...
  13. Hutan

    UK: Priority Setting Partnership for ME/CFS

    @MEMarge, given that you have spent a lot of time working through the list and thinking about the options, would you be willing to share your personal top ten choices?
  14. Hutan

    UK: Priority Setting Partnership for ME/CFS

    Indeed, it is possible that it will be a tool to argue against BPS research. But there is the risk that the items chosen will actually leave scope for BPS investigations, and so the PSP may be counter-productive. That's why it is important that as many people as possible in the UK submit a...
  15. Hutan

    The maintained attention assessment in patients affected by [ME/CFS]: a reliable biomarker?, Murga et al, 2021

    It would be interesting to have the tests repeated a number of times in the same people, to see how stable the results are. My ability to concentrate definitely fluctuates, so I'm not sure about the 'reliable biomarker' of the title. Figure 1 shows that that some of the patients did as well as...
  16. Hutan

    News from France

    A new paper out from BPS France: Do Anxiety and Depression Predict Persistent Physical Symptoms After a Severe COVID-19 Episode? A Prospective Study, 2021, Bottemanne et al
  17. Hutan

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think a number of posts are at cross purposes and inadvertently creating straw men arguments. Comments that members, including myself, made about very specific points have been responded to as if they applied to the whole document. I don't think anyone thinks that the RCPCH summary of the...
  18. Hutan

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Sure, but the discussion started around whether the RCPCH had misrepresented the guideline on several particular issues, two as shown in bold here, and one about patient choice: And they didn't - they quoted the guideline. They were factually correct on that, and that's what I was referring...
  19. Hutan

    Do Anxiety and Depression Predict Persistent Physical Symptoms After a Severe COVID-19 Episode? A Prospective Study, 2021, Bottemanne et al

    It's very small to be a prospective study of persistent symptoms after Covid-19 infection. A study these authors quote found 14% of patients had persistent symptoms at 3 months. With only 84 participants in this study, that's not many people with persistent symptoms at 3 months, especially not...
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