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This seems totally unevidenced. Not the sort of thing that should be in a module like this. Also, FND doesn't look like ME/CFS if you know anything about the two conditions. I don't think that should be in either.

I'm not going to vote in this because the gap in my case is slightly different. I had a bout of acute stress in April/May 2012 and seemed to have some sort of virus—sore throat etc. Was prescribed penicillin V, probably wrongly. From then on I had mild fatigue, tinnitus, and lots of...

I believe this module is general education and basic management stuff for primary care staff. I don't think David Strain should be writing this. Also, it doesn't look like there's been adequate co-production.

These advocacy projects seem a little archaic to me. I can imagine these will unfortunately go straight in the bin at some practices. EDIT: The plasma screen rental is probably a better idea so I hope that pays off.

It's not really my place to tell Katie what to do. I don't know her, I just responded to her X thread the other day and we had a chat via DM. It would be helpful if one of the other patient reps reached out to her.

Hi Joan, Are you in the Education group? Katie Johnstone, one of the patient reps in this group, is now thinking of not providing any feedback to this Module 2 document, even though there are clear issues with it. She does not feel heard, and thus is not sure whether she'll actually provide...

They seem to have used quite limited inclusion criteria based on certain terms appearing in the title and/or abstract. Perhaps we need more red tape so that such basic grammar mistakes do not pass the writing, peer review and publication stages.

Here is an X thread and a separate but related BlueSky thread from Katie Johnstone who is reviewing one of the medical education modules that has been developed as part of the DHSC Delivery Plan. She has some concerns—some, though not all, of which seem valid. Do we have anyone here who is on...

Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic medical condition with no specific pharmacological treatment. Creatine, a nutrient essential for maintaining energy homeostasis in the cells, is a candidate for interventions in ME/CFS. Methods: Fourteen...

I can't access the archive link above, but I scanned this earlier and it's not clear to me how this 'rejection' has come about—is this a formal response to something?

I believe this is true. I think even stuff like Vicks First Defence helps lessen the risk of infection. https://www.southampton.ac.uk/news/2024/07/overcounter-nasal-sprays-could-keep-colds-and-flu-at-bay-study-finds.page

https://meassociation.org.uk/2024/09/job-opportunity-freelance-press-officer/ ME Association is advertising for a freelance press officer. Could be suited to someone with (milder) ME given the expected hours/month.

A 'traditional' model of disability has people needing a wheelchair, and those who are really ill needing a bed right away. I think we with dynamic disabilities and energy-limiting conditions once again fall between the cracks. There are innumerable ways in which healthcare settings could be...

benefitsandwork.co.uk has just published a new guide for those claiming PIP for ME/CFS. The full guide is only available to paid members, but the page below gives a flavour of what is in the guide. The linked page also includes some interesting stats on PIP claims by those with a primary...

Yeah, this is not good. It's about time we the community cut ties to these cranks.

It's great to see mathematicians getting involved, but it seems the first author, a post-doc, might only be tangentially involved with ME work at Edinburgh. On first look this seems like high-quality work. Also it's weird seeing a paper on ME typeset in LaTeX.

Monica Greco at Goldsmiths is a potential project lead. She has coauthored with Sharpe on BPS topics. It could be that she's supervising this summer project. Edit: Looks like she has moved to the University of Bath. So perhaps she's not the contact at Goldsmiths, although she's listed as a...

Raelan is in the states. What I assume has happened is someone has had an idea for this project and they've picked her channel because it's arguably the biggest. But major conflicts of interest. She herself has all sorts of ties to different programmes including at least a dozen brain retraining...

I don't have the energy to retype all this. So here's a thread about an undergraduate research internship project at Goldsmiths (University of London). Possible links to BPS researchers, Recovery Norge, etc—major red flags...

https://www.linkedin.com/in/miranda-dafoe-760b47184 Seems she was working at the Stanford lab for a year. Perhaps a family member? Now doing a nursing degree, according to LinkedIn.