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  1. MSEsperanza
    Post

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

    Related 'Health Information' for people with ME/CFS:...
    Post by: MSEsperanza, May 15, 2023 in forum: Other reviews with a public consultation process
  2. MSEsperanza
    Post

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

    IQWiG just have published their report on ME/CFS. Press release (German) here. From the press release / google translate: "The information...
    Post by: MSEsperanza, May 15, 2023 in forum: Other reviews with a public consultation process
  3. MSEsperanza
    Post

    ME Awareness Day / Week / Month, May 2023

    Michael A Osborne on Twitter: "This is Alem Matthees, from my home town of Perth. Alem has ME/CFS, and he filed the FOI request that busted open...
    Post by: MSEsperanza, May 12, 2023 in forum: Advocacy Projects and Campaigns
  4. MSEsperanza
    Post

    ME Awareness Day / Week / Month, May 2023

    Sheffield ME & Fibromyalgia Group on Twitter: "Join us online/in person at @CircleSheffield on Friday May 12th for our #WorldMEDay celebration!...
    Post by: MSEsperanza, May 12, 2023 in forum: Advocacy Projects and Campaigns
  5. MSEsperanza
    Post

    The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

    Link to the questionnaire (docx file) here.
    Post by: MSEsperanza, May 11, 2023 in forum: Long Covid research
  6. MSEsperanza
    Post

    Perceived Cognitive Deficits in Patients With Symptomatic SARS-CoV-2 and Their Association With Post–COVID-19 Condition, 2023, Liu et al

    Science Media Centre's (UK) take on this: Dr Michael Zandi, Consultant Neurologist, UCL, said: “The authors present a study looking at factors...
    Post by: MSEsperanza, May 11, 2023 in forum: Long Covid research
  7. MSEsperanza
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Apologies, off topic but find it hard to cope with the fact that a number of forum members much smarter than I and who started or were engaged in...
    Post by: MSEsperanza, May 11, 2023 in forum: ME/CFS research news
  8. MSEsperanza
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Could you give examples? I don't get why you need psychometric measurement tools for monitoring patients with ME/CFS. I think a smart symptoms/...
    Post by: MSEsperanza, May 10, 2023 in forum: ME/CFS research news
  9. MSEsperanza
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Maybe a difference is that talking about RA symptom and coping with the disease and treatments is not as 'complex' as talking about ME/CFS...
    Post by: MSEsperanza, May 10, 2023 in forum: ME/CFS research news
  10. MSEsperanza
    Post

    Basic questions on terms and methodology used in clinical trials

    Related to the discussion on developing assessment tools for monitoring disease activity/ impact/ disability -- Why is the term 'psychometric'...
    Post by: MSEsperanza, May 10, 2023 in forum: Trial design including bias, placebo effect
  11. MSEsperanza
    Post

    Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell

    Apologies, only read the abstract and thought the paper's main finding was that not all reductions in functioning relevant to people with ME/CFS...
    Post by: MSEsperanza, May 9, 2023 in forum: ME/CFS research
  12. MSEsperanza
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Hi @sarahtyson & welcome to the forum. Great to have you -- as an expert who's also a person with ME/CFS and a carer -- on the forum engaging...
    Post by: MSEsperanza, May 9, 2023 in forum: ME/CFS research news
  13. MSEsperanza
    Post

    Bias due to a lack of blinding: a discussion

    This paper posted on a thread of its own might be a useful addition to the discussion (not related to ME/CFS) ?
    Post by: MSEsperanza, May 9, 2023 in forum: Trial design including bias, placebo effect
  14. MSEsperanza
    Post

    The difficulties of conducting intervention trials for the treatment of [ME/CFS]: Expert testimony to NICE guidelines committee by Jonathan Edwards

    Recently was reminded that there's a translation of Jo's testimony into German. Translation was commissioned by the German charity Fatigatio --...
    Post by: MSEsperanza, May 9, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  15. MSEsperanza
    Post

    Bias due to a lack of blinding: a discussion

    Don't think it was redundant. Also, still hope I or anyone else will be able someday to a) find people who could (help) translate it into...
    Post by: MSEsperanza, May 7, 2023 in forum: Trial design including bias, placebo effect
  16. MSEsperanza
    Post

    ME Awareness Day / Week / Month, May 2023

    Anil van der Zee on Twitter: "A short blog post for M.E. Awareness Month for the #MillionsMissing Missing." https://t.co/fYldgZODZI
    Post by: MSEsperanza, May 6, 2023 in forum: Advocacy Projects and Campaigns
  17. MSEsperanza
    Post

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

    Apologies for cross-posting from another thread: This year's Conference of the European Association of Psychosomatic Medicine (EAPM) in June 2023...
    Post by: MSEsperanza, Apr 28, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  18. MSEsperanza
    Post

    European Research Network to Improve Diagnosis, Treatment and Health Care for Patients with Persistent Somatic Symptoms (EURONET-SOMA)

    Thanks for posting -- did not see this one: FRIDAY 16 | 10:15-11:30 | KAMIENICA ROOM SYMPOSIUM CFS/ME: CONTROVERSY AND COMMUNICATION FOLLOWING...
    Post by: MSEsperanza, Apr 28, 2023 in forum: News from organisations
  19. MSEsperanza
    Post

    European Research Network to Improve Diagnosis, Treatment and Health Care for Patients with Persistent Somatic Symptoms (EURONET-SOMA)

    "The EURONET-SOMA networks meets regularly twice a year: a brief meeting takes place during the annual conference of the European Association of...
    Post by: MSEsperanza, Apr 28, 2023 in forum: News from organisations
  20. MSEsperanza
    Post

    A general thread on the PACE trial!

    A recent reference to the PACE trial in a study protocol (*) by one of the project teams of the large SOMA.CROSS research group at the UKE...
    Post by: MSEsperanza, Apr 28, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
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