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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:

I'm not sure what progression you are referring to but historically, evidence based medicine was an attempt to overcome 'medicine by authority' with which it has met with some success. However there are some significant failings in EBM thinking and it was these that science based medicine was...

Respecting a point of view doesn't mean unconditionally agreeing with it. The best arguments are between people who hold diverging views but who respect both the other person and the fact that their view is sincerely held. Of course some views are toxic and those who hold them command no respect...

AfME has four PwME on a ten member Board of Trustees. It is very simple rule, if we want people to respect us, we have to respect them and if PwME want the various organisations that represent us to work together, then co-operation is only going to happen where there is mutual respect. That...

That makes the recent complaint even more dubious, and probably pointless, unless the intention was simply to get some bad press coverage for AfME. Perhaps a quick explainer might help non UKers understand some of the background - being a Registered Charity is the only legal condition for...

Absolutely this. There's much discussion here https://www.s4me.info/threads/blog-beyond-the-nice-guideline-mecomms©-and-the-case-for-a-public-inquiry.21332/ that is based around the need for UK organisations to co-operate; there is no chance of co-operation if organisations and the patients...

The Charity is a legal entity and the Trustees in place at any one time are legally the face of that entity and are responsible in Law for all current and past actions of the Charity, there are various ways that Trustees can be protected as individuals but they have to act according to their...

As a measure of how complex these questions are, it was long considered that far from being a support for the immune system, high levels of testosterone were an immuno-suppressive, if that were true, and if immune response did play a role in ME/CFS then one would expect male patients to see...

How do you make sense of a chaotic system ? How do you make sense when comparing separate chaotic systems ? 5 dimensional multi directional Jenga anyone ? Age and aging in ME/CFS is (yet another) unexplored area and it's certainly reasonable to postulate that maturing in the young, or...

I have very poor peripheral attention which means I'm always mashing up my hands, and in the garden that means infected cuts which then take ages to heal. I'm also forever taking off heavier gloves because there's some fiddly thing I can't manage with them on, and then of course I either forget...

Or whether any of these abnormalities are in anyway other than merely correlational with the causal pathology of ME/CFS ! Having a reading that is abnormal, i.e 'out of the range' that has previously been determined as 'normal' in a disease free population, is not in itself a measure of...