"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...
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...
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...
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...
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).
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...
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)
"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...
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...
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
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...
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:
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...
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...
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...
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.
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...
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...
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...
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