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

Suffolkres said:
I am an old sceptic,.... but have been hugely encouraged by the teams recent efforts.
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Yes, although it has obviously been a long haul for you, it does seem that one should never give up because the end result might just be a bit more sensible than what might seem the inevitable. There may be time to steer things in the right direction and people who seem to be pulling in the wrong direction at the moment may come to see it would be better to pull differently.
 
Jonathan Edwards said:
Yes, although it has obviously been a long haul for you, it does seem that one should never give up because the end result might just be a bit more sensible than what might seem the inevitable. There may be time to steer things in the right direction and people who seem to be pulling in the wrong direction at the moment may come to see it would be better to pull differently.
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Very NICE..LY put!
I always have believed in the art of the possible.

For 25 years East Anglian groups have collectively worked systematically and relentlessly to hold matters to account.

Recommend any area groups refer and use Local Authority Health Scrutiny and Overview democratic services mechanisms to effect change.
We referred to them 2006.

They served us very well!
The Monitoring Officer (lawyer) likewise.
 
Suffolkres said:
As of 1st October, our draft spec went out to Procurement with contract awarded, and mobilisation still underway, October 2025, under steer of Dr. Luis Nacul.
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I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be. We've discussed it elsewhere on the forum. The service promotes unproven therapies including Graded Activity Therapy (it's just not called that).

I hope it goes well.
 
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Hutan said:
I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be.
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I know Luis Nacul very well. I think his brief in Canada may have required more of a positive gloss than we would like. The review of practice paper we looked at is quite cautious. Luis takes biomedical explanations seriously and has worked hard with the European ME research network. I would hope that he would agree with the general view here. It is much easier for me to be critical of the system than for people inside it, I suspect.
 
Jonathan Edwards said:
I know Luis Nacul very well. I think his brief in Canada may have required more of a positive gloss than we would like. The review of practice paper we looked at is quite cautious. Luis takes biomedical explanations seriously and has worked hard with the European ME research network. I would hope that he would agree with the general view here. It is much easier for me to be critical of the system than for people inside it, I suspect.
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Surely if you’re in charge of something you get to avoid using therapies you think is harmful?

And the harm being critical might cause to the practitioners is dwarfed by the harm done to patients if the bad interventions are allowed to continue.
 
Utsikt said:
Surely if you’re in charge of something you get to avoid using therapies you think is harmful?
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Not necessarily. I have seen these problems play out in London decades ago. If you say to the commissioning budget-holders "I think instead of one doctor and forty therapists we she have four doctors and four nurses" you are quite likely to get in reply "We have a better idea. We like to have a therapist service. We will close your unit down and arrange something else".

I am not saying that I know the details of the situation in Canada but you pay a very heavy price for not towing the line. When I applied for the senior training post that led to my permanent role as an academic rheumatologist I was advised that although I had a good CV my prospective employers had been warned that I might cause trouble upsetting the physios. The back channel stories prior to my final post interview were enough to get the interview cancelled until the prospective colleague who had set it up with me in mind got it re-instated. The medical world does not tolerate the independent-minded. Only the lay public can sort that out, but they prefer to believe all is well.
 
V.R.T. said:
How can the lay public sort it out?
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By enquiring into what goes on. I could tell a bunch of lay people all sorts of hair-raising stories about unethical behaviour but nobody asks. How come there is still a merit award system for good boys and girls that can double their salary that is almost entirely dependent on networking and brown-nosing? Why doesn't the public say - "no way".
 
Jonathan Edwards said:
By enquiring into what goes on. I could tell a bunch of lay people all sorts of hair-raising stories about unethical behaviour but nobody asks. How come there is still a merit award system for good boys and girls that can double their salary that is almost entirely dependent on networking and brown-nosing? Why doesn't the public say - "no way".
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Through what possible mechanism? The position of PwME for the last forty years shows how little power the public has.
 
Sasha said:
Through what possible mechanism? The position of PwME for the last forty years shows how little power the public has.
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Does it? Maybe it shows the lack of interest or commitment. When things have gone very badly wrong in some branches of medicine we have had things like the Alder Hey report, the Letby events, the enquiry into cardiac surgeons, the contaminated blood report, etc.

All that lay people would need to do is to ask how the system works and gather evidence from people like me ready to tell them how it is. And say no thanks.
Andy said:
Because the lay public are taught that the opinion of the lower classes isn't important and they should let the 'great and good' get on with being all superior.
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But in the last twenty years lots of working class people have been in the House of Commons - like Javid, Rayner, ... dozens of them. And there are quite a lot in the Lords - not to mention Lady that was Mone. It seems that when people get in a position of power they learn to say 'Two legs good, four legs bad'. However you look at it, it has to be up to the public to decide not to hand out bribes for good behaviour to people looking after their health. They are the customer and the customer is supposed to be right.

We have people dying in A/E corridors every day of the week and the general public doesn't seem to be too bothered (inferring from the party opinion polls!). There is no overall strategy for health research and nobody seems to be aware of that. Everybody knows that hospital managers would rather pretend there is no problem and get a promotion than call things out. The system is designed to work that way by the politicians, including the working class ones. Streeting was born in Stepney and went to a state school. He was apparently bright enough to get into Cambridge but it sounds as if he was working class.
 
Jonathan Edwards said:
Does it? Maybe it shows the lack of interest or commitment. When things have gone very badly wrong in some branches of medicine we have had things like the Alder Hey report, the Letby events, the enquiry into cardiac surgeons, the contaminated blood report, etc.
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You surely don't mean lack of interest or commitment by PwME?

[Edit: I was thinking about the powerlessness of PwME to change their own situation so was maybe looking at this in a different way from what you were.]
 
Sasha said:
You surely don't mean lack of interest or commitment by PwME?
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No, the general lay public. This is a general issue about governance of medicine.
But I am beginning to realise that most of the advocates for people with ME/CFS who get the chance to interact with government are not prepared to challenge lots of things they should. That is how we got to where we are with the Delivery Plan. Even charities have to look as if they are doing something positive and that creates conflicts. Fortunately there are people like Suffolkres who will never be trampled on.
 
Utsikt said:
So we essentially have to accept the beatings because if we don’t we’ll be beheaded..
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That is the situation that doctors are in. Blow the whistle and you are out sharpish.

I am not sure quite how it applies to patients. Patients should complain for all their worth. It won't make things any worse for them as far as I can see.
 
I think people who choose to fight for something, choose something specific that really matters to them and possibly affects them or their beloved one(s) personally. Yes, a general state of the public healthcare system affects everyone but it's a lot of problems combined and intertwined in a big and complex system. Those who experience problems while seeking care are more likely to try to engage around improving those particular aspects, if they decide to do anything at all.

When it comes to workplace conditions and circumstances, those who don't work for the NHS either work somewhere else and are more likely to try to tackle injustice at their workplace or industry, or don't work and likely have to think about the benefits, if they have capacity and willingness to fight.

There are all sorts of causes people care about and some will try to push things for the better but I think it's very unlikely that someone chooses to deal with the hiring and reward system at someone else's workplace or industry.
 
Jonathan Edwards said:
That is the situation that doctors are in. Blow the whistle and you are out sharpish.

I am not sure quite how it applies to patients. Patients should complain for all their worth. It won't make things any worse for them as far as I can see.
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Well, we can’t really complain about the bad doctors because they will be replaced by the terrible ones.
 
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