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...
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...
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...
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...
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.
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...
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.
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...
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
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...
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...
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...
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...
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.
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...
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