UK Government Delivery Plan for ME/CFS, published 22nd July 2025

[BrightCandle]

Those FOIed completion numbers are dire. Back in July the BMJ reported (link) that RCP had agreed to promote the e-learning modules; clearly that has not occurred.

Or maybe it has happened and this reflects the actual amount of interest in doing it. I maintain that my doctors refuse to read the NICE guidelines, they refuse to read medical papers presented to them, they utterly refuse to engage with any part of ME/CFS science at all and prefer to believe in psychosomatic nonsense. Asking them nicely will not change my circumstances, because I and others have tried that. If its not mandatory its not going to happen and mandatory is going to require enforcement on doctors that refuse to comply with it. These figures may very well reflect the state after its promoted.

I have sign posted my GP to these trainings and they have refused to do them. I don't think this is abnormal in the NHS at all, we didn't get to the appalling diagnosis and widespread abuse of patients because GPs are really keen to learn about this disease.

 

[bicentennial]

And who fomented and led the rebellion, very rude, public, deliberate, rabble-trousing, so persistent and proud to reject all authority, its guideline, its statement of implementation, its plan of delivery and its due diligence and compliance project.

 

[bobbler]

Ironically, as awful as those numbers are, they are higher than I would have guessed.

Shifting from complete systemic failure doesn't happen by asking "pretty, please" nicely. Never has, never will. This will take courage and leadership, and although I'm sure this occasionally happens, I have not once seen that out of health care. It will take a major shift in attitudes and culture, as big and visceral as going from total discrimination on the basis of sexual orientation to one where it's never an issue.

This isn't scientific, technical or professional, it's entirely a human problem, as much as it is with any other form of discrimination in systems built to incentivized misbehavior and negligence. While it takes leadership and courage here, this is where things are at their worst, a classic "who will lead the leaders?" when the leaders absolutely refuse to do anything but fail.

I look at them and assume those numbers are pwme and allies going by when I've tested content and released it in the past and asked interested persons to read it. Are these unique users by login (rather than different IP addresses etc from same person accessing on phone then computer etc)?

 

[bobbler]

Ironically, as awful as those numbers are, they are higher than I would have guessed.

Shifting from complete systemic failure doesn't happen by asking "pretty, please" nicely. Never has, never will. This will take courage and leadership, and although I'm sure this occasionally happens, I have not once seen that out of health care. It will take a major shift in attitudes and culture, as big and visceral as going from total discrimination on the basis of sexual orientation to one where it's never an issue.

This isn't scientific, technical or professional, it's entirely a human problem, as much as it is with any other form of discrimination in systems built to incentivized misbehavior and negligence. While it takes leadership and courage here, this is where things are at their worst, a classic "who will lead the leaders?" when the leaders absolutely refuse to do anything but fail.

there is also the issue that I think ironically people are still led to assume that ME/CFS training is for 'those in the clinics' , who by the sounds are likely to be the ones least likely to want to read it and change in response to anything because the lead comes from BACME.

some HCPs might have training hours but I'm guessing that there is a long list of other things queuing up for that small amount of time and for those who have to justify what they've chosen (or not been able to read yet due to workload) you've got the issue it doesn't only have to be seen as 'worthwhile' by the HCP themself but also those they report to as a good use of their time.

And there comes the real question - for those who have read it is it 'a good use of people's time' or does the politics muddy the message and extend the length of time reading it when I think of eg @PhysiosforME putting sheets together with really clear 'what will they read' and 'what's the main penny-drop for this target audience we need to get across'. And then think of the different levels and layers of people we might encounter and the different situations for those (and how they might need further sheets if it goes to practice/partner meeting or ICB level)

Agree on the attitude stuff, and yes certain tropes with that list coming directly from us (and not compromised with BACME or those using them) just need to be outlawed as obvious and variations on them obvious. It would move knowledge forward more hugely than a lot of things too because it would stop the confusion that all those 'false beliefs' might be something other than that and have to be pandered too.

- it is quite funny that one large employer I know had an anti-bullying policy that was called 'respect and dignity' or something like that. ANd those two words chime a lot with me if you strip them down to the worst possible not giving someone those. It also feels like there are obviously ways people feel they can skirt that spirit with two-faced pretend polite whilst knowing they are being dismissive or pushin buttons on what someone has said is a specific disability (don't speak fast, give me time to process), then twisting that request to weaponise it as some other insinuation (cognitive dysfunction type bs) to achieve an end elsewhere - one thing I find incredibly disgusting as it seems to be at its worst in healthcare the one place you'd expect to have to be at least a bit better at understanding these things eg like a stroke patient isn't thick just because their speech is currently affected would be, you know, most needed/expected to be 'got' by HCPs and allieds vs a retail worker or accountant.