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Useful review paper out: The persistence of [ME/CFS] after SARS-CoV-2 infection: A systematic review and meta-analysis, 2024, Dehlia et al Finding that 51% of people with Long Covid in the included studies meet ME/CFS criteria

From the abstract, it looks like a useful paper for advocacy. Very good conclusion. Of course, who knows if it is 50%, and I expect there were all sorts of problems with selection differences.... but it's good to be able to back up a statement of 'a significant proportion of people with...

We have had a complaint that this thread is becoming very hard to follow and the moderators agree. Please remember that the topic of this thread is 'Maeve Boothby O'Neill - her life, death and inquest' Before posting, consider if your post would be better on another thread. For example: This...

Thanks for writing about your ME/CFS and recovery @siobhanfirestone. Sorry the mods didn't see your question about where to put the thread. The treatments section is fine, we will just expand your title to include the full name of the drug. (If ever anyone wants to ask about where to post a...

I read the story a while back, and I agree. Well written and easy to read. From memory, Lily reports having chronic EBV, with periodic flares of substantiated active EBV disease, but also with ME/CFS. I meant to go back and read it again not focussed on the story but instead on the symptoms...

New abstract (paragraphs added by me for improved readability) The only change from version 1 in the abstract is the use of ME/CFS as the disease name. There's just this bit that I think still needs more work They say that ME/CFS status had a significant effect on only one trait, and then...

Yes, I agree. Dr Kane speaks very well, she manages to come across as both likeable and authoritative. But yes, she, and by extension we, are very vulnerable to how Kane's use of an unevidenced potentially harmful treatment on children is seen. I hope Dr Kane will have the insight to see this...

(Finland) Social and health services used by persons with chronic fatigue syndrome (Myalgic encephalomyelitis/Chronic fatigue syndrome), 2024, Rentola

(Finland) Social and health services used by persons with chronic fatigue syndrome (Myalgic encephalomyelitis/Chronic fatigue syndrome), 2024, Rentola I assume this is the result.

For one shocking moment I read that as Wessely being directly involved in the e-learning, but the screenshots don't suggest that, it's just(!) that he's on the Board of NHS England. Yes, re David Strain - I hope he brings in lots of support for that development work. He might find it helpful...

Yeah I'm pretty sure an Incorporated Society created under the 2022 Act can decide what a quorum is at their AGM. There is a Constitution Builder and, while there is a minimum on the number of Trustees/Committee Members (at least three), there's no such specification about the AGM quorum. I...

Ron Davis' lab, funding from OMF and the Patient-Led Collaborative We know that the body adapts to a lack of physical challenge - there is no need to produce high levels of cortisol if someone is sedentary at home. There is particularly no need to have a marked morning peak cortisol level if...

I think that's a really excellent summary of the issues. From the end of the article about the author and the acknowledgements: I think it is worth ongoing pushing on that Walitt paper. The effort preference discussion in the paper is very close to hate speech (and certainly provides fodder...

Apologies for not providing the attribution of the diagram: Sir Dame EleanorF #MEowner @EleanorSews

Paul Keeble: Coroner. Intends regulation 28 draft directed to bodies identified and copied to others appropriate. Wil be a doc of public record. Everyone can see it. A long and harrowing process. No one happy or has all the answers. Hopes this report starting a change in this. Steve Fifield...

Paul Keeble: Trust lawyer. Task to finish community care piece still ongoing. On policy a flow chart. A trust could provide an update in 28 days, not a policy but which post holders are responsible for what. Lucibee: Fairly concerning that a senior clinician doesn't know that only NICE...

MEAI: Mr Launds doesn’t have questions Coroner says she will write a reg 28 report to the Trust She says SB is quite right when she says people will move around, move on, that she was expecting a policy doc that would give a pathway if someone came through the door Jerkie: SB quite right...

MEAI: Coroner says SO’N has a great deal of influence if he has other suggestions of who to write to He has already suggested the Health sec but she has no power but can bring the concerns raised to the Gov’s attention She could copy in any of the bodies that wud find use Edit to add: Graphic...

Jerkie: H: I've had to try different avenues to initiate movement. (ref to lack of national level contact & engagement) SBO: Are you surprised [by the] lack of engagement from national level? H: I'd rather not answer. Steve Fifield: Coroner / Sean O’Neill Q&A: Should Coroner be writing to NICE...