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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...

A number of posts about OMF's budget and research strategy have been moved here: Open Medicine Foundation (OMF)

Some posts have been moved from this thread: MEAction 2021 MECFS researchers video with R Davis,Prusty

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.

From the News from Germany thread: Update provided by a forum member 23/10/22:

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...

Notice of recruitment of people with ME/CFS and healthy controls for a study in Victoria: Recruiting: La Trobe University mitochondrial research.

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...

The following quotes are from a resource about Covid-19 prevention, but relevant to give an idea of how monoclonal antibodies against lyme might work:

A post about the suicide of a woman with Long Covid has been moved to the In Memory thread

Yes. Although there is still the risk that the intervention has taught the person that they should not think they are unlikeable or afraid of spiders. And therefore, they know that, when they are asked at the end of the intervention, 'are you unlikeable/afraid of spiders' they should say 'no...

Irrefutable medical abnormalities and fatigue? Not a problem. Sure, your brain is a bit worse for the wear, but the fatigue is something that can be fixed by thinking right. It's perfect, as there's no pressure to fix any holes in brains. So long as you get people filling out end-of-CBT...

https://emedicine.medscape.com/article/315632-overview I've said before, I see a lot of similarities between ME/CFS and GBS. I have not understood why ME/CFS is viewed so sceptically when GBS is acknowledged to exist. My symptoms occurred after a not particularly remarkable gastrointestinal...

This tweet by the UK Royal College of Psychiatrists about their realisation that there is an antidepressant withdrawal syndrome and that it can last several years was posted by @rvallee on another thread: (edited to explain tweet in case the link is broken.)