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https://web.archive.org/web/20101211083628/http://www.bacme.info/aboutbacme/

Kent and Sussex have a total population circa 4 million, which if we take 250,000 as the UK patient number, would give a pro rata of around 15,000 patients in K&S. Compared to the MEA and AfME which have perhaps 4,000 members/subscribers/supporters each, 800 members would be favourable, at...

Charity Register shows limited financial activity in recent years: https://www.s4me.info/threads/sussex-kent-me-cfs-society.1906/page-4#post-365194 down to £6.4k in 2019, up to £15k in 2020. It only reports as small Charity so only gives a limited report of its activities. Current Trustee Chair...

"In contrast, the patients with non-infection-triggered ME/CFS showed fewer and other correlations" How is it possible to distinguish between infection and non infection triggered ? Self report cannot identify underlying pathophysiology. This unaddressed assumption could have a major impact on...

Questioning professional affiliation is a bit iffy. Every senior medical professional in the UK belongs to one of the Royal Colleges or some comparable entity, so calling out an 'august' body because it might back the view of one of its members doesn't have a lot of strength and certainly isn't...

"Events, my dear boy, events"* Given the release date is mid August when half the UK media is on holiday and we are in what is traditionally the 'silly season' where media content is even more than usually filled with trivia, we could have expected the Guidelines to get a good deal of media...

Click-bait masquerading as journalism.

Specifically mentions CFS: Edited to add spacing

Sci-hub link for those without other access - https://sci-hub.se/https://doi.org/10.1016/j.brat.2017.11.004 The mythical 'deconditioning gets a mention:

Although modes of employment for males and females have become increasingly similar type of job still provides a major 'effect modifer' (aka confound !). Employment related health impairment is more common in both males and females in less wealthy socioeconomic groups than wealthier groups but...

If there are no 'good' options, the question becomes what is the 'least worst' ? In the current UK position holding on to the imperfect with the intention to seek improvement would seem more achievable than slash & burn and start from new. Until now the commissioning bodies, and NHS strategy...

Absolutely this ^ The only thing I would add to your post, and to the points raised by Jonathan Edwards, is that the situation is especially critical given the staffing crisis in the NHS - 84,000 fte vacancies in February 2021 https://www.kingsfund.org.uk/projects/positions/nhs-workforce . The...

Given that (it appears ?) that the patient voice is now informing research to a degree that has some significance, it is perhaps more important that priorities sought by patients reflect our expectations. The point I was trying to make in contrasting epidemiology with (as an example) PEM, is...

A study based on intentionally selecting for survivor bias. Applied to drowning this would include a) those who avoided water, b) those who only went in ankle deep, c) those who had a lifebelt.

Research is always going to require a standardised protocol, so to actually get to a lab test CPET or some other measurable provocation is needed to investigate the phenomenon. Post exertional malaise has always been an accurate description of my experience - 24 to 48 hours after investment of...

I think epidemiology is by far and away the number one research priority for ME/CFS however we need to understand what can be achieved, what needs to be achieved and at what cost. Large scale random sampling of whole populations which involves detailed medical examination of individuals, is...

Of course that would require wholly new large scale epidemiological studies - involving of course substantial costs. Studies such as this one are using existing data and cost little. I think the larger problem is not the case definition but the reliance on self report via questionnaire, what is...

In the face of the pandemic/post pandemic pressures, a decade of systemic underfunding and the catastrophic understaffing occurring post Brexit, it's very difficult for anyone openly organise, let alone effectively conspire, to achieve a desired outcome for a particular service within the NHS...

Looks like a fairly typical HR exercise of squeezing a new responsibility into an existing service, or shifting personnel across from one service area to another, or circumscribing a new position as the best fit for a preferred candidate. None of which is very promising from a service user...

An attempt by an independent observer to get the data: