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  1. ME/CFS Skeptic
    Thread

    News from The Netherlands

    I thought it might be useful to have a thread on ME/CFS news for the Netherlands, similar to the threads we have on Scandinavian countries. If...
    Thread by: ME/CFS Skeptic, May 6, 2020, 215 replies, in forum: Regional news
  2. ME/CFS Skeptic
    Post

    Open Fred Friedberg (University of Stonybrook) Hydrogen Rich Water; Heart rate variability biofeedback in CFS

    Ik like how you phrased that sentence. It is said...
    Post by: ME/CFS Skeptic, May 5, 2020 in forum: Recruitment into current ME/CFS research studies
  3. ME/CFS Skeptic
    Post

    Follow-up results of GETSET never published?

    Thanks for pointing this out. On the other hand, Peter White did manage to publish a 2018 paper on patient experiences and perceptions from the...
    Post by: ME/CFS Skeptic, May 3, 2020 in forum: Psychosomatic news - ME/CFS and Long Covid
  4. ME/CFS Skeptic
    Thread

    Follow-up results of GETSET never published?

    Does anyone know if the follow-up results of the GETSET trial were ever published? Apologies in advance if I'm overlooking something. The 2017...
    Thread by: ME/CFS Skeptic, May 3, 2020, 8 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  5. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    [MEDIA]
    Post by: ME/CFS Skeptic, May 2, 2020 in forum: Advocacy Projects and Campaigns
  6. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    Yes the plan is to contact MEPs and provide template letters for other patients who would like to join in, but it's a bit soon now because we...
    Post by: ME/CFS Skeptic, May 1, 2020 in forum: Advocacy Projects and Campaigns
  7. ME/CFS Skeptic
    Post

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    To clarify: I suspect the figure of 70% you use refers to the 68% reported in the paper. But this was 68% of the 22 patients who already responded...
    Post by: ME/CFS Skeptic, Apr 30, 2020 in forum: ME/CFS research
  8. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    One issue which that has been noted is the figure of 32 million for economic burden, which comes from the EUROMENE website. This seems far too low...
    Post by: ME/CFS Skeptic, Apr 30, 2020 in forum: Advocacy Projects and Campaigns
  9. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    Thanks for picking this up Kalliope, looks like a great press release (I've sent an email about the spelling mistakes though, hope they will be...
    Post by: ME/CFS Skeptic, Apr 30, 2020 in forum: Advocacy Projects and Campaigns
  10. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    [MEDIA]
    Post by: ME/CFS Skeptic, Apr 30, 2020 in forum: Advocacy Projects and Campaigns
  11. ME/CFS Skeptic
    Post

    Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, 2020, Jason & Johnson

    I don't think it works that way. If I understand correctly there isn't a pot of ME/CFS money that gets distributed, it's more that funding...
    Post by: ME/CFS Skeptic, Apr 29, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  12. ME/CFS Skeptic
    Post

    Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, 2020, Jason & Johnson

    Made a twitter thread on this for ME Awareness hour: [MEDIA] 1) Leonard Jason and Madeline Johnson have written an interesting paper where they...
    Post by: ME/CFS Skeptic, Apr 29, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. ME/CFS Skeptic
    Post

    Diagnosis of mast cell activation syndrome: a global “consensus-2”, 2020, Afrin et al

    This sentence seems to sum up the paper and the whole MCAS situation:
    Post by: ME/CFS Skeptic, Apr 28, 2020 in forum: Immune: Autoimmune and Mast Cell Disorders
  14. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    The draft motion for the European resolution on funding for biomedical research on ME is available here:...
    Post by: ME/CFS Skeptic, Apr 28, 2020 in forum: Advocacy Projects and Campaigns
  15. ME/CFS Skeptic
    Post

    ME/CFS: A Case-Based Learning Module, 2020, Gluckman. Medscape CME

    Bit busy now with the run-up to 12 May but will get back to this! My first impression was that it was good though.
    Post by: ME/CFS Skeptic, Apr 27, 2020 in forum: General ME/CFS news
  16. ME/CFS Skeptic
    Post

    ME Action: The EU committee on petition is preparing a resolution on ME

    It seems that the next meeting of the Committee on Petitions will go ahead as planned on 30 April. The Draft Motion for a Resolution on additional...
    Post by: ME/CFS Skeptic, Apr 27, 2020 in forum: Advocacy Projects and Campaigns
  17. ME/CFS Skeptic
    Post

    2019 Supervised walking improves cardiorespiratory fitness, exercise tolerance, and fatigue in women with Sjögren’s syndrome; miyamoto et al

    Wouldn't that effect be present in petty much all studies - hard to get around it I suppose? I have a statistics question because I don't quite...
    Post by: ME/CFS Skeptic, Apr 26, 2020 in forum: Other health news and research
  18. ME/CFS Skeptic
    Post

    ME/CFS: A Case-Based Learning Module, 2020, Gluckman. Medscape CME

    This was announced at the CDC stakeholder meeting. I've quickly skimmed through it and thought it was actually quite good - some overstatement...
    Post by: ME/CFS Skeptic, Apr 25, 2020 in forum: General ME/CFS news
  19. ME/CFS Skeptic
    Post

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS - 2020 - Schreiner

    Don't know enough about biology to determine if this hypothesis makes sense or not, but here are my attempts to understand what's in the paper....
    Post by: ME/CFS Skeptic, Apr 24, 2020 in forum: ME/CFS research
  20. ME/CFS Skeptic
    Post

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    Thanks Kalliope! However, I suspect that this is something else than the protocol, like the application they had to write to get funding. I...
    Post by: ME/CFS Skeptic, Apr 24, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
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