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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...

MEAI: Sean O N speaks now & asks questions of Dr H What is the most recent comm you have had at national level & are you disappointed w responses Dr H: most recent was with Dr Marsh in Sept He’s not surprised that he’s been required to try different avenues complex matter SB: do you envisage...

Jerkie: S: Was Trust aware when they did the audit that wards were always short of staff? Lack of nurses. H: Don't know, sorry. SB: highlights the woefully inadequate / slow and cumbersome system to keep records including nutrition requirements, nurses were using pieces of paper. Asks if H is...

MEAI: SB: brings up ‘PEM’ W/out specialist provision for ME specifically those patients are at risk of becoming malnourished or suicide. Where there are mental health needs, psych need knowledge C: This cant be sorted at reg level, needs to be at a higher level, national Paul Keeble: S...

Paul Keeble: S. Is working as a social worker with ME because patients now she knows. Also training other social workers. Extremely hard for social care and nurses to differentiate between patients. No one is talking about PEM. Jerkie: S: PEM needs to be dealt with, discussed - it separates ME...

MEAI: SB refers to Alice Barrett’s presentation Mr H interrupts saying can’t refer to confidential cases Paul Keeble: S. Is it really risk free to make recommendations on one case when we know 15% of patients become this severe. Steve Fifield: Everything known in 1993 that 15% were expected to...