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  1. MSEsperanza

    Bias due to a lack of blinding: a discussion

    "meta-epidemiological evidence and practical experience suggest" Isn't that a very weak or even self-contradictory argument? What is the role of "practical experience" in scholarly assessing evidence of clinical trials other than it needs some clinical practice to set up a trial in a way...
  2. MSEsperanza

    Protocol Minirico Mental Intervention and Nicotineamide Riboside Supplementation in Long Covid

    Interesting. Not sure if it is a good idea to combine these interventions in the way they do, though, especially with the primary endpoint being a S4-36 scale. So no matter whether the dietary supplement will show an effect or not, the trial arms with the added therapist-delivered...
  3. MSEsperanza

    Have you limited your activity more than you needed to?

    Thanks for asking @dave30th and thanks for setting up the poll @Hutan. Maybe worthwhile to add questions on how long was the longest period people had without experiencing PEM? Not sure I ever experienced a period without PEM for more than 3 consecutive days. Maybe when I was much milder...
  4. MSEsperanza

    Bias due to a lack of blinding: a discussion

    Thank you everybody for your replies. Looking forward to reading hopefully soon but won't be able to engage in the discussion for a while, all the more happy if others find it worthwhile to engage. Thought it's an interesting trial that's relevant to discussions on ME/CFS clinical trial design...
  5. MSEsperanza

    Comparative effectiveness of [CBT], modafinil, and their combination for treating fatigue in multiple sclerosis (COMBO-MS), 2024, Braley et al

    Discussion on aspects of the trial related to bias due to the lack of blinding see the discussion thread here. (And sorry, won't be able to read /contribute for a while).
  6. MSEsperanza

    Bias due to a lack of blinding: a discussion

    Here's a tricky one -- does that trial show that both modafinil and CBT are effective in relieving MS related fatigue, and that each treatment alone as well as their combination are equally effective? Some very quick thoughts: For what seems the current mainstream view on evidence on...
  7. MSEsperanza

    Finding (patient) advocates and (civil) scientists on social media

    A starter pack maybe useful for those interested in clinical trial methodology: https://bsky.app/starter-pack/katiegillies.bsky.social/3lbd5pt5kno23 (Surprised by the very broad spectrum of disciplines and subdisiplines)
  8. MSEsperanza

    Comparative effectiveness of [CBT], modafinil, and their combination for treating fatigue in multiple sclerosis (COMBO-MS), 2024, Braley et al

    "The primary outcome was the change in Modified Fatigue Impact Scale (MFIS) from baseline to 12 weeks, assessed using multiple linear regression, adjusted for age, sex, study site, anxiety, pain, baselines MFIS score, and physical activity." "Change in MFIS scores from baseline to 12 weeks did...
  9. MSEsperanza

    Comparative effectiveness of [CBT], modafinil, and their combination for treating fatigue in multiple sclerosis (COMBO-MS), 2024, Braley et al

    Full title: Comparative effectiveness of cognitive behavioural therapy, modafinil, and their combination for treating fatigue in multiple sclerosis (COMBO-MS): a randomised, statistician-blinded, parallel-arm trial Background Fatigue is one of the most disabling symptoms reported by people...
  10. MSEsperanza

    Finding (patient) advocates and (civil) scientists on social media

    So I remembered Brian Hughtes' website where I found he's on Bluesky now too (and posting, whereas no activity on Mastodon for several months now) https://bsky.app/profile/bmhughes.bsky.social But where's David Tuller? @dave30th ? Link to his blog here
  11. MSEsperanza

    Hinxton scale development (new research outcome measure)

    See this post and discussion on a members only thread. Previous thoughts on the matter posted here on fully public thread. Links to more forum discussions in the same public thread starting here. Would be a pity if the constructors of the Hinxton scale didn't find it useful to consult with...
  12. MSEsperanza

    United Kingdom: ME Association governance issues

    It has the title "Animals need to move", right? Then it's what is being discussed starting here: An Open Letter has been created -- see this post: Hope it's OK to copy the Open Letter's text here:
  13. MSEsperanza

    United Kingdom: ME Association news

    Just for clarity: This comment quotes the the criticized leaflet, it's not an actual comment, but cites what the MEA intents to point out as outdated. link to leaflet...
  14. MSEsperanza

    Finding (patient) advocates and (civil) scientists on social media

    Thank you @Dolphin and @EzzieD-- that's very helpful. Good to see so many familiar names on Bluesky. Maybe there will be a bridge to Mastodon and other social media someday. For those who don't have an own account ( I don't have either), here's how you can access the accounts listed in the...
  15. MSEsperanza

    Finding (patient) advocates and (civil) scientists on social media

    There were a couple of social media accounts on ME/CFS research and advocacy, as well as more general research relevant for ME/CFS I used to follow in the past. I haven't checked them for a while due to diverse reasons, including diminished capacity / downturn in my health. I was happy to...
  16. MSEsperanza

    The Concept of ME/CFS, 2024, Edwards

    There is another comment on Jonathan's Qeios article, by a professor of sleep medicine. https://www.qeios.com/read/WMQGBY (It's hidden as a comment on Nigel Speight's comment) Now changed to Rheumatology.
  17. MSEsperanza

    Long Covid drug BC-007 research news

    Yes, even if the proposed mechanism related only to the proportion of pwLC that showed what some researchers established as (potentially) pathological levels of GPCR AAB. (I forgot what the proportion actually was) Perhaps still related -- using the funds for a publication of the LC study...
  18. MSEsperanza

    Long Covid drug BC-007 research news

    Also, if there was a positive effect, I think this would have still be recorded by that measure - as I think it was used already in their first studies and now It's just the placebo controlled phase that probably showed that previously reported improvements (by the same scale) couldn't be due...
  19. MSEsperanza

    Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID, 2024, Wang+

    In addition to what was already said above: Not only very little mean improvement but if I understood properly all scores still indicate impairment? Why did they use the reversed score? Is this common (if not -- why confuse things regarding comparability ?) Sorry, only was able to read the...
  20. MSEsperanza

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    Just thought what's said at the end of the article is important in these times, too:
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