NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

[CRG]

I'm not disagreeing with you Barry, given the politics around this. I'm just hoping next time around there will be no necessity for compromise. I don't suppose I'll live long enough to see it, but I do see hope for the future, and am grateful for this first step.

I suspect that there is always some level of compromise in every NICE Guidance between the provider and patient interest. What's notable about the ME/CFS situation is the intransigence of the providers.

It would probably be better all round if public discourse could cope with provider interest being an accepted part of discussions around the delivery of health care but we're stuck with Florence Nightingale type myths and slogans about patients coming first, and patients at the centre, all of which give a false picture of what health care is.

 

[Barry]

I'm not disagreeing with you Barry, given the politics around this. I'm just hoping next time around there will be no necessity for compromise. I don't suppose I'll live long enough to see it, but I do see hope for the future, and am grateful for this first step.

Yes, even with this sea change there is still a long journey ahead. At least now we are hopefully pointing in more or less the right direct, so that much better progress can be made. Until now most of the 'progress' as been negative. There will still be a great need for all our wonderful hard hitting advocates (not going to name any, because I'd be sure to overlook some), but one of the biggest battles is finally behind us, and only now is it possible to move on to the next phase.

And I wish you as long and as happy a life as is feasible for you Trish .

 

[adambeyoncelowe]

Agree with all you say in your post Trish. But if NICE had not gone for the 'balance' they did, it is very possible that attempts to get the new guideline pulled completely might have succeeded. As it was, it looks like NICE did everything they could to pre-empt any attempt for the BPS brigade to argue there was bias against them. Given we now know how hair-trigger some of the behind-the-scenes machinations got, it is possible that only failed because there was no chink of bias they could try to prise open and exploit.

Any new guideline was always going to be a compromise, and we could so easily have been looking at something much worse. Or if some had had their way, still stuck with the old guideline.

Exactly this. NICE was quite clever, really, because without NHS staff represented it would've been so much easier to reject the whole GL.

And we can't underestimate how much certain people fought for the committee members we got. I think the only way people like Willie and Charles were on the guideline at all was because they could argue it was a necessary balancing act.

If they hadn't made it about balance, we would've got a 100% pro-BPS committee, with some lonely lay members up against it. I can guarantee that. So it was either a balanced committee or a biased one (against us).

When I say there was broad agreement, I mean everyone agreed on most things that mattered to patients. The areas of divergence were CBT and exercise, of course, but even then, everyone agreed patients shouldn't be made to push through and ignore symptoms.

But it's important to note that you do also have to address stakeholder feedback. Compromises often have to take their comments into account as well as the committee's, and where it doesn't, you need rock solid arguments.

The fact of the matter is, there's very little evidence that's of good enough quality. We could've published a blank guideline, but what practical use would that have been? All of the good stuff in the principles of care section, for example, wouldn't have gone in if we'd been inflexible. So we had to accept some degree of lived and clinical experience to get anything in there. And that means compromise.

I see the broad agreement of the committee members as a solid foundation for building new alliances going forward, though. And with BACME on board, it's only a matter of time before the status quo becomes a more supportive one (I notice Physios for ME are having a huge impact on how activity is managed in this condition and in long COVID, and I think that will filter out more widely).

We still have our work cut out for us, but NICE was only ever going to be a stepping stone. I know people wanted it to be perfect, but realistically, you can't go from a state of pervasive disbelief, paternalism and gaslighting to a medical utopia overnight. This was always going to fall somewhere between the hell of CG53 and the ideal of what we really want and need. I'm just pleased it's a lot closer to the ideal than it could have been.

If we're 50% there now, maybe it'll be 75% next time, and 87.5% the time after that, and so on. And realistically, no NICE GL is perfect for any condition.

 

[Jonathan Edwards]

It would probably be better all round if public discourse could cope with provider interest being an accepted part of discussions around the delivery of health care

I don't follow that. Why would provider interests be relevant to deciding what is useful healthcare?

 

[Keela Too]

I was about to start typing something, but honestly @adambeyoncelowe has just said it all better.

However, I’m proud of what the committee, that I was part of, achieved with this guideline.

Is it word perfect? Of course not! When there’s a committee with a range of viewpoints, there will always be some phrases where the wording must be a compromise. However overall this guideline is one of substantial progress, and remarkable agreement around the table. I hope our NHS care will now improve by the same substantial measure.

However I think real change will only happen once we start to get mainstream research funding directed towards understanding and treating the underlying pathophysiology of fatiguability, PEM, and other disabling symptoms. Once that properly gets going, then the whispers about us just needing a bit of “exercise and positive thinking” will fall away.

 

[Trish]

However, I’m proud of what the committee, that I was part of, achieved with this guideline.

And justly so. I'm not complaining in my comments, more recognising reality. Of course I didn't expect miracles, given the circumstances.

But we can't get away from the fact that the circumstances of the BPS monopoly on ME/CFS treatment in the UK over the last 30+ years should never have happened. The 2007 guideline should never have happened. That was a huge failure by NICE. Am I glad it didn't happen again this time? Of course I am.

The so called balance this time around was based on the false premise that the BPS therapists and researchers had any useful knowledge to contribute.

I don't follow that. Why would provider interests be relevant to deciding what is useful healthcare?

I think we with ME/CFS in the UK have had 30+ years of being ground down by gaslighting, ignorance and harmful treatments. So we are of course grateful that progress has been made. The new guideline is a significant step forward, thanks to the good people on the guideline committee who we can name. I'm both at the same time hugely grateful to those individuals, and sad that we still have to compromise with people who have no business being involved at all.

It's like the years the BBC spent thinking they had to provide balance by giving equal airtime to climate change deniers and valid climate science. That at last seems to have faded away. It's time they and the rest of the media did the same for ME/CFS. We have a long way to go.

Sorry, I'll get off my soap box and go and watch Sherlock Holmes investigating a murder on TV.

Hugs and thanks to @Keela Too, @adambeyoncelowe and @saranbonser and the others on the guideline committee who did their best on our behalf. You have earned your place as heroes in ME history.

 

[CRG]

I don't follow that. Why would provider interests be relevant to deciding what is useful healthcare?

Within the UK/NHS context - I don't know enough about other countries/cultures systems - the divorce between on the one side what politicians and senior management promise and what the media demands, and on the other what a healthy, well rewarded, well supported workforce can deliver, is stark. It's a feature that's been there since the foundational mistaken premise of the NHS - that free at point of use healthcare would lead to reduced health spending became evidently wrong in the late 1950s and early 1960s. It began with reliance on an exploited immigrant workforce, dependence on underpaying female staff, hiding from public view the most cinderella of cinderella services, (mental health, elder care, etc) and later even cutting NHS wages as a Government budgetary strategy.

In subsequent decades the divorce between the promise and the experiences of the people charged with delivering the promise has become an entrenched feature of UK culture. I'm not suggesting NICE Guidelines are the right place to register provider interest, nor that the RCs should be the sole voice or arbiter of what the provider interest is. But I don't see that the pretence of a command form of NHS delivery, sort of "the Daily ...... says it should be, the Government says it must be and the Head of the NHS says it will be" is sustainable given how the wheels are clearly falling off.

The NHS is delivered by people and I think the voices of those people do need to be heard when 'more' or 'different' is being promised.

 

[Sean]

However I think real change will only happen once we start to get mainstream research funding directed towards understanding and treating the underlying pathophysiology of fatiguability, PEM, and other disabling symptoms. Once that properly gets going, then the whispers about us just needing a bit of “exercise and positive thinking” will fall away.

Besides survival, the most important thing we had to do was get the physiology researchers interested.

 

[Trish]

The NHS is delivered by people and I think the voices of those people do need to be heard when 'more' or 'different' is being promised.

But not necessarily the people currently delivering the wrong treatment and keen to hold on to their current practices and jobs.

 

[Jonathan Edwards]

The NHS is delivered by people and I think the voices of those people do need to be heard when 'more' or 'different' is being promised.

I still don't get that. The problem with the service and the working conditions is the gross underfunding, which is compounded by the huge cost of cost-cutting. It is perfectly possible to provide an excellent service that the public can afford as long as the funding is realistic.

I agree that if the voices of the people delivering service were saying 'the service is falling apart - give us enough support to do things properly' then they should be listened to, but it is the people delivering the service who specifically are not voicing that. They are not allowed to, so it has to be voiced by others. Managers are appointed because they have agreed not to point out problems. I resigned from clinical medicine because I did voice these concerns and nobody listened.

The noise we are hearing from healthcare professionals in rehab, liaison psychiatry and physio is 'give us more work, help us build our empires'.

After all the fuss here is about de-recommending certain treatments.

 

[obeat]

The noise we are hearing from healthcare professionals in rehab, liaison psychiatry and physio is 'give us more work, help us build our empires'.

So how do we reach doctors, (to develop a long-term interest), beyond these specialists , given how the Royal cronies have demonised us again?

 

[Suffolkres]

I don't follow that. Why would provider interests be relevant to deciding what is useful healthcare?

Because many are Community Interest Companies ( CIC) who answer to their 'investors" ie staff ,,, and are really at the end of the day only answerable to companies house and to balance the books!
They exclude public from meetings or note and do not have to publish minutes of meetings.

They say they are exempt from most FOI as well.
They ( senior managers) basically do as they please, as Directors.
In my experience they will depart from and alter service provision and can only be held against their contracts by commissioning CCGS.

 

[Jonathan Edwards]

So how do we reach doctors, (to develop a long-term interest), beyond these specialists , given how the Royal cronies have demonised us again?

Just take every opportunity that comes, I think.

The guideline process and the round table got a message across to some new people. I try to get the message across to HealthWatch and through the media when asked.

I suspect the most productive route for patients is as lay representatives on local health organisations such as commissioning bodies.

Reaching doctors who might pursue a career in ME research is hard at present because the medical profession has been ground into the dirt so much people are just interested in surviving.

 

[Jonathan Edwards]

Because many are Community Interest Companies

But that is why they are irrelevant - more than irrelevant, misleading.

 

[Suffolkres]

There is Covid money floating about and also explore Special and Exceptional Needs where an individual doctor can be contracted in y CCGs.

 

[FMMM1]

Sorry, I'll get off my soap box and go and watch Sherlock Holmes investigating a murder on TV.

Are you going to consult on the identified options ----?

 

[Suffolkres]

But that is why they are irrelevant - more than irrelevant, misleading.

You are of course you are correct, at the end of the day.
If all that they 'sell' and provide on offer is not acceptable, they should have contract terminated and if they mess up withdrawn with penalties.
It's essentially a market place so they can be forced to wise up and deliver ..... or else!
In pour area these CIC's are gobbling up 'services" and reforming and reframing them on a 'business model not 'patient need' line.

That does not provide either good value for the money and little patient satisfaction.

The last thing they will agree to is co production atm.
Our petitioning in Suffolk was partly on making a business case for better alternative approach.
It was bartered and resulted in the service run by Luis Nacul.
Any area will need to prepare a business case that will provide with value for money so the CCGs/Alliances will bite.
There has to be a better way forward for this!

 

[Barry]

But not necessarily the people currently delivering the wrong treatment and keen to hold on to their current practices and jobs.

Agree whole heartedly. If you imagine these clinics and clinicians on the "shop floor" they have patients they are (have been?) delivering these ongoing treatments to - and suddenly the plug is being pulled on those treatments, and implicitly therefore those who swear by them. They will probably feel every need to try and justify themselves and their treatments to their existing patients. What is the strategy going to be to change? Are these treatments immediately withdrawn? If not, how could they possibly justify continuing treatments that the guideline now explicitly prohibits. Definitely a year of big change ahead I would think. A bumpy ride.

 

[Tilly]

Exactly this. NICE was quite clever, really, because without NHS staff represented it would've been so much easier to reject the whole GL.

And we can't underestimate how much certain people fought for the committee members we got. I think the only way people like Willie and Charles were on the guideline at all was because they could argue it was a necessary balancing act.

If they hadn't made it about balance, we would've got a 100% pro-BPS committee, with some lonely lay members up against it. I can guarantee that. So it was either a balanced committee or a biased one (against us).

When I say there was broad agreement, I mean everyone agreed on most things that mattered to patients. The areas of divergence were CBT and exercise, of course, but even then, everyone agreed patients shouldn't be made to push through and ignore symptoms.

But it's important to note that you do also have to address stakeholder feedback. Compromises often have to take their comments into account as well as the committee's, and where it doesn't, you need rock solid arguments.

The fact of the matter is, there's very little evidence that's of good enough quality. We could've published a blank guideline, but what practical use would that have been? All of the good stuff in the principles of care section, for example, wouldn't have gone in if we'd been inflexible. So we had to accept some degree of lived and clinical experience to get anything in there. And that means compromise.

I see the broad agreement of the committee members as a solid foundation for building new alliances going forward, though. And with BACME on board, it's only a matter of time before the status quo becomes a more supportive one (I notice Physios for ME are having a huge impact on how activity is managed in this condition and in long COVID, and I think that will filter out more widely).

We still have our work cut out for us, but NICE was only ever going to be a stepping stone. I know people wanted it to be perfect, but realistically, you can't go from a state of pervasive disbelief, paternalism and gaslighting to a medical utopia overnight. This was always going to fall somewhere between the hell of CG53 and the ideal of what we really want and need. I'm just pleased it's a lot closer to the ideal than it could have been.

If we're 50% there now, maybe it'll be 75% next time, and 87.5% the time after that, and so on. And realistically, no NICE GL is perfect for any condition.

The fight for balance on the committee was an important one, and one we should revisit because it shows the imbalance of how ME is treated, misunderstood and the total lack of research and the difference between Long covid . This is where we keep fighting.

Perfection as a target is forever changing and I think more change is on the way. BMJ has just done an investigation with a whistleblower regarding the covid-19 vaccine trial. with integrity, poor practices and regulatory oversight show that it is not just in ME world that this happens.

I think very few underestimate what it took to be on the guidelines and we are and so we should be very grateful and proud of those who stood up for ME on them. I do think we need some acknowledgment and interviews of who it worked to further the understanding of the process and the need for change.

 

[Jonathan Edwards]

IN case anyone is looking up reference 18 from:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00183-0/fulltext

I would urge Dr Flottorp and colleagues to stop making complete fools of themselves by indicating a complete lack of understanding of how to judge the quality of clinical trial evidence. I also think an apology might be due for implying that somehow as an expert for the NICE committee I was prejudiced in my opinion. Readers of this thread will see that my approach has been purely to look at evidence quality with no bias towards one thing or another.

The irony is that the charge of competing interest rests entirely on those writing the Lancet comment. I have no competing interest at all.

My opinion of the PACE trial was not influenced by patients. It was created by listening to Dr Peter White presenting his view of patients being anti-science, to an audience including a lot of patients. (Tact was not a strong point.) Starting off by flashing up a single data slide with a truncated Y axis and a minuscule difference in subjective scores between test and control told me all I needed to know.