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

[Hutan]

Neurologists like nothing better than some immunotherapy.

I can think of many things the neurologist that I consulted and the neurologists that I have read about such as Suzanne O'Sullivan like better than immunotherapy. I'd give examples, but my off-topic negative characterisation of a whole medical specialty would create work for the moderators.

 

[V.R.T.]

But right in the middle of the middle slide where there was a box for what was actually to be done it said "multidisciplinary rehabilitation".

At this point, this is inexcusable medical negligence and iatrogenic harm on a grand scale and the people responsible deserve legal consequences.

 

[Jonathan Edwards]

I can think of many things the neurologist that I consulted and the neurologists that I have read about such as Suzanne O'Sullivan like better than immunotherapy.

I think this is a mischaracterisation. Remember that even a certain S Wessely tried to find abnormalities in lymphocytes and HLA (he may even have found a genuine genetic signal twenty five years before DecodeME) before giving up and going for CBT. As soon as doctors find a simple solution with an injection that cures people they switch whatever their previous preferences. Just like the gastroenterologists all lapped up bismuth for H pylori.

I am quite sure that messrs Stone and Carson would happily give Daratumumab and write papers on how its effect explained FND.

Immunotherapy brings power - because it brings budgets. Rheumatology went from Dick Whittington and a cat to Mayor of London in ten years when we got billion dollar budgets for biologics.

When there are motor cars not many people still drive ox-carts.

 

[Jonathan Edwards]

At this point, this is inexcusable medical negligence and iatrogenic harm on a grand scale and the people responsible deserve legal consequences.

What is the charge, your honour?
Misconduct in Public Office?

 

[bobbler]

I guess that my disappointment today arose from a single pair of words in the middle of a DHSC slide. We were told a lot about the conditions a service had to meet but remarkably little about what professionals would deliver it or what they would actually do. But right in the middle of the middle slide where there was a box for what was actually to be done it said "multidisciplinary rehabilitation". (It had also mentioned a biopsychosocial approach but it wasn't quite clear in what context.)

I think everyone needs to make it clear that the service needed for ME/CFS is not Rehabilitation. It is:

Diagnosis

Support (including honest information)
and

Care of the severely ill.

Rehabilitation, with "goals" and assessment by PROMS, comes nowhere in this.

I agree? Who is there that will do this for us? How do very ill patients who can’t travel and attend even if they were invited get this across?

It seems the charities are fine even after all the fighting for better to just sign off that all even those harmed by the last decades of it only deserve a coerce to work services instead of healthcare (it’s not even real psychology even when they did do it just toxic positivity to coerce by certain communication techniques )

Somehow we deliberately get landed with staff who can’t help with adjustments or prescribe for a debilitating illness that only has treatment that harms

Is the whole thing a facade stitching us up or is it those who are supposed to be representing us signing this off for us by never stating what is needed , maybe because they are happy with this for some reason being the regime/lot for pwme?

 

[V.R.T.]

What is the charge, your honour?
Misconduct in Public Office?

I'm currently waiting for my partner to wake up and struggle through making dinner whilst I lie here unable to help her because we were both completely crippled by the bullshit these people spout. There are countless other people in this state because of them. So forgive me if I'm not in the mood to play the 'oh precisely which law did they break when they lied to you until you ended up dependant on care for your most basic needs' game.

 

[bobbler]

At this point, this is inexcusable medical negligence and iatrogenic harm on a grand scale and the people responsible deserve legal consequences.

Oh but it’s justified by the ‘you can always say no’ fallacy for staff made part of that system and asked to not question why what we are offered isn’t medical

 

[Jonathan Edwards]

So forgive me if I'm not in the mood

Of course. I was being flippant, in the context of a second major UK public figure being arrested under this charge today.

The crime here seems to be more the adherence to the political requirements of said public office.
And incompetence in public office. But I don't think either are on the statute books even if they should be.

 

[V.R.T.]

Of course. I was being flippant, in the context of a second major UK public figure being arrested under this charge today.

Yes I realised that shortly after posting! Temper may be a little short today.

Thanks for advocating for us at the meeting, even though it didnt go as hoped.

 

[Jonathan Edwards]

Is the whole thing a facade stitching us up or is it those who are supposed to be representing us signing this off for us by never stating what is needed , maybe because they are happy with this for some reason being the regime/lot for pwme?

I think it is both and significantly the latter. I worry that people with mild or past ME/CFS get involved in advocacy and think that just asking for more, like Oliver Twist, is enough. They don't seem to realise that it requires knowing what is edible.

 

[Nightsong]

Something I am wondering, though:

How many people were in the room / on the video call?

And how many of them objected to the DHSC plan's aim to deliver "biopsychosocial" "multidisciplinary rehabilitation"?

 

[Jonathan Edwards]

Temper may be a little short today.

So's mine, with all this. No way was offence taken.

 

[Sasha]

I guess that my disappointment today arose from a single pair of words in the middle of a DHSC slide. We were told a lot about the conditions a service had to meet but remarkably little about what professionals would deliver it or what they would actually do. But right in the middle of the middle slide where there was a box for what was actually to be done it said "multidisciplinary rehabilitation". (It had also mentioned a biopsychosocial approach but it wasn't quite clear in what context.)

I think everyone needs to make it clear that the service needed for ME/CFS is not Rehabilitation. It is:

Diagnosis

Support (including honest information)
and

Care of the severely ill.

Rehabilitation, with "goals" and assessment by PROMS, comes nowhere in this.

You've just put out an excellent open letter rebutting to BACME's document. Do we now need an open letter spelling out your proposed service model?

 

[Utsikt]

You've just put out an excellent open letter rebutting to BACME's document. Do we now need an open letter spelling out your proposed service model?

Yes please!

 

[Hutan]

Immunotherapy brings power - because it brings budgets. Rheumatology went from Dick Whittington and a cat to Mayor of London in ten years when we got billion dollar budgets for biologics.

That rather proves my point. Ample budgets, power, high consulting fees in private practice, long lunches, golf on Fridays, these things are appreciated by some neurologists. No doubt for some, an ability to genuinely help patients matters. Many things are appreciated by neurologists more than immunotherapy itself... Anyway.

What is the charge, your honour?
Misconduct in Public Office?

So forgive me if I'm not in the mood to play the 'oh precisely which law did they break when they lied to you until you ended up dependant on care for your most basic needs' game.

I think @V.R.T. that that might have been a reference to the charges certain high ranking individuals such as an ex-prince have been faced with lately. And that, at least until recently, these people were untouchable. That is probably the case with respect to people causing harm to people with ME/CFS too, and on top of that, there is the difficulty in actually attributing the harm to specific people.

But, I share your disappointment and fury. I'm particularly disappointed and angry with the patient charities, who should know better.

 

[Jonathan Edwards]

How many people were in the room / on the video call?

About 30. It was very carefully stage managed. About 10 advocates had a chance to speak and replies were highly selective. Unfortunately a lot of the 'advocates' went off on tangents that are likely to have left the DHSC thinking that we did not have any act together. Not all though. Some people got powerful points across. I think what made an impact was the universal focus on severe/very severe.

Nobody else picked up on the biopsychosocial or rehab, including none of the medics. Interestingly Anna G stuck to arguing for more nursing recognition and psychological support rather than therapy.

 

[Utsikt]

Nobody else picked up on the biopsychosocial or rehab, including none of the medics.

The medics are happy to pawn them off because they don’t know how to deal with them either..

Interestingly Anna G stuck to arguing for more nursing recognition and psychological support rather than therapy.

Who is she?

 

[Jonathan Edwards]

Who is she?

The chair of BACME.