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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

    No. The current standard, as exemplified by most literature on the subject and most recently and relevantly by the NICE ME/CFS Guideline evidence review, is that subjective outcomes in unblinded trials constitute low or very low quality evidence of treatment efficacy. If the reviewers in the...
  2. Hutan

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

    I guess I'd question your fundamental premise. Would a pharmacological treatment be accepted if all the trials showing its efficacy were unblinded and the important outcomes were only subjective? I don't think so. So, why would that be acceptable with other sorts of treatments? Requiring...
  3. Hutan

    Effects of a mindfulness-based and acceptance-based group programme followed by physical activity for patients with fibromyalgia, 2021, Haugmark et al

    I often include researchers names in posts, to acknowledge their role in producing a poor piece of research. In this case, I think it's worth congratulating these authors - they reported what they found in the abstract, with no spin. The outcomes were patient-reported and largely subjective...
  4. Hutan

    New Scientist - Long Covid: We have ignored post-viral syndromes for too long, 2021, Le Page et al

    It's worth a listen. My impression is that these journalists didn't go very deep, but it feels like quite a step forward for journalists not to have to spend weeks unravelling the politics and science of an ME/CFS-like illness and yet still come to pretty decent conclusions. Good to hear about...
  5. Hutan

    Graded Exercise Therapy for Patients with Chronic Fatigue Syndrome in Secondary care: a benchmarking study, 2021, Smakowski, Chalder et al

    Having seen the rules for what evidence will be reviewed for the forthcoming German ME/CFS Guideline, I think the BPS crowd know that the war to retain control consists of many battles.
  6. Hutan

    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    From the press release: "Myalgic encephalomyelitis / chronic fatigue syndrome: IQWiG invites comments on the report planThe BMG has commissioned the Institute to present the current state of scientific knowledge on ME/CFS. Now the Institute is releasing its intended working method for comment...
  7. Hutan

    MEAction 2021 MECFS researchers video with R Davis,Prusty

    A number of posts about OMF's budget and research strategy have been moved here: Open Medicine Foundation (OMF)
  8. Hutan

    Open Medicine Foundation (OMF)

    Some posts have been moved from this thread: MEAction 2021 MECFS researchers video with R Davis,Prusty
  9. Hutan

    News from Germany

    I've set up a thread in the Reviews subforum: Germany: IQWIG Report to government on ME/CFS - feedback July 2021 where possible feedback can be discussed.
  10. Hutan

    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    From the News from Germany thread: Update provided by a forum member 23/10/22:
  11. Hutan

    Graded Exercise Therapy for Patients with Chronic Fatigue Syndrome in Secondary care: a benchmarking study, 2021, Smakowski, Chalder et al

    Which are alone more than sufficient to make the paper not convincing. Of course most people referred to the clinics will improve over time as the illness takes its natural course. But, we could add (with respect to the abstract): No mention of dropouts No mention of harms No accounting for...
  12. Hutan

    News from Scandinavia

    I think this thread is related to the claim - Stavenger University - heat shock proteins and hypocretin Interleukin-1beta, heat shock protein 90alpha, and hypocretin-1 in chronic fatigue (not CFS) (PhD thesis), 2020, Bardsen
  13. Hutan

    Article series in Guardian, June 2021: The pain that can't be seen. (chronic pain, Long Covid, ME/CFS)

    From memory, that association came largely from a single flawed US study. I'll post a link if I find it. Here's one frontiers in Pediatrics: Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome by Boneva, Unger et al 2019 A small study, raising questions about selection. and...
  14. Hutan

    biomolecules: Bioenergetic and Proteomic Profiling of Immune Cells in ME/CFS Patients: An Exploratory Study - Fernandez-Guerra et al - 2021

    Small (6 patients) Danish study. It's free access - you can download the pdf. Paula Fernandez-Guerra Ana C. Gonzalez-Ebsen Susanne E. Boonen Julie Courraud Niels Gregersen Jesper Mehlsen Johan Palmfeldt Rikke K. J. Olsen Louise Schouborg Brinth Aarhus University, Odense University Hospital...
  15. Hutan

    Self-tunable engineered yeast probiotics for the treatment of inflammatory bowel disease, 2021, Benjamin M Scott et al

    It's interesting. So they are saying extracellular ATP is the (or perhaps part of the) cause of IBD. And they can create yeast cells that sense the e-ATP and mop it up. I wonder how firm that assertion that e-ATP causes IBD is. There's the question of why commensal microbiota and/or host...
  16. Hutan

    News from Australia

    Notice of recruitment of people with ME/CFS and healthy controls for a study in Victoria: Recruiting: La Trobe University mitochondrial research.
  17. Hutan

    Mike's EU Marathons

    Great interview, thanks @Mike Harley. I'm sure that the awareness you have raised around Europe is worth many times the considerable amount of funds that you have raised. If any of your contacts from around Europe don't yet know Science for ME and perhaps might like to create or contribute to...
  18. Hutan

    In progress: Therapies for Long COVID in non-hospitalised individuals: the TLC Study

    This article suggests more of a commitment to patient involvement than the website does, with the involvement of LongCovid SOS. https://www.birmingham.ac.uk/news/latest/2021/02/long-covid-research-treatment-symptoms-health.aspx Like I said, very happy to be proved wrong.
  19. Hutan

    In progress: Therapies for Long COVID in non-hospitalised individuals: the TLC Study

    There are 24 people named as being part of the study. So far, there seems to be only one patient partner. This is a 2.2 million pound study and the plans seem pretty much sorted out. So, although there seems to still be some potential for people with Long Covid to be involved, there isn't a...
  20. Hutan

    First Clinical Study of the Safety and Blood Levels of a Human Monoclonal Antibody (2217LS) Against Lyme Disease Bacteria in Healthy People

    The following quotes are from a resource about Covid-19 prevention, but relevant to give an idea of how monoclonal antibodies against lyme might work:
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