2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

[ukxmrv]

The roundtable could be a way of making this a RC's vs ME Charities showdown on services. Part of a longer fight maybe.

The current clinics offering CBT and GET have patients attending who may feel that they are benefiting and some who want to hear that there is a cure (even in reality that may only be a few). If clinics close because of a backlash by staff on the new Guideline or if they continue to operate without CBT as a cure for unhelpful beliefs etc and GET as a cure of patients deconditioning then patients currently having treatment and those on waiting list may complain. They could potentially be manipulated into making complaints about the change to the service(s).

There may be some service providers who are quite happy to throw patients under the bus and either refuse to offer PACING or to close the clinic. The blame for this they could be looking to dump on the MEA, NICE etc.

I'd like to think we could get better clinics and doctors out of this. I don't have any access to a clinic close to me.

 

[Peter T]

The roundtable could be a way of making this a RC's vs ME Charities showdown on services. Part of a longer fight maybe.

The current clinics offering CBT and GET have patients attending who may feel that they are benefiting and some who want to hear that there is a cure (even in reality that may only be a few). If clinics close because of a backlash by staff on the new Guideline or if they continue to operate without CBT as a cure for unhelpful beliefs etc and GET as a cure of patients deconditioning then patients currently having treatment and those on waiting list may complain. They could potentially be manipulated into making complaints about the change to the service(s).

There may be some service providers who are quite happy to throw patients under the bus and either refuse to offer PACING or to close the clinic. The blame for this they could be looking to dump on the MEA, NICE etc.

I'd like to think we could get better clinics and doctors out of this. I don't have any access to a clinic close to me.

Under the new guidelines as per the November 2020 draft, existing specialist services would be able to continue much as they are, just relabelling their GET as activity management sneaking rehabilitation in under the idea of ‘pacing up’ and relabelling their CBT as supportive, which in theory was all that was possible under the 2007 guidelines anyway. Existing specialist ME/CFS services could with a little bit of rebranding and change of emphasis, which has already happened on the ground in some services, continue largely unchanged.

Though the new guidelines would make it harder long term for specialist services to pretent severe ME does not exist.

The big issue is the rejection of PACE that underpins so much else, from FND/MUS to IPAPT, and the ever more generic pain/fatigue clinics. The new guidelines represent the rejection of the BPS preferred research methodology and of an ideological approach of patient blaming. Any changes will probably not impact on the people delivering services in at least the short and middle term, but they will majorly impact the great and the good whose careers, professorships, knighthoods etc were won on the back of applying the GET/CBT ideology to people with ME and an ever increasing number of other conditions.

What is being fought over here, less than the future of the current specialist services, is further expansion of FND/MUS services, future Long Covid empire building and future seats in the House of Lords.

 

[Amw66]

Under the new guidelines as per the November 2020 draft, existing specialist services would be able to continue much as they are, just relabelling their GET as activity management sneaking rehabilitation in under the idea of ‘pacing up’ and relabelling their CBT as supportive, which in theory was all that was possible under the 2007 guidelines anyway. Existing specialist ME/CFS services could with a little bit of rebranding and change of emphasis, which has already happened on the ground in some services, continue largely unchanged.

Though the new guidelines would make it harder long term for specialist services to pretent severe ME does not exist.

The big issue is the rejection of PACE that underpins so much else, from FND/MUS to IPAPT, and the ever more generic pain/fatigue clinics. The new guidelines represent the rejection of the BPS preferred research methodology and of an ideological approach of patient blaming. Any changes will probably not impact on the people delivering services in at least the short and middle term, but they will majorly impact the great and the good whose careers, professorships, knighthoods etc were won on the back of applying the GET/CBT ideology to people with ME and an ever increasing number of other conditions.

What is being fought over here, less than the future of the current specialist services, is further expansion of FND/MUS services, future Long Covid empire building and future seats in the House of Lords.

This. The question is - is IAPT/ MUS/ PPS simply being considered as too big to fail ?

 

[chrisb]

In accepting the invitation to the roundtable has S4ME taken any steps to test the good faith of NICE by, for example, seeking information as to the identity of the "independent chair"? One would, of course, not expect the identity to be disclosed, but it would be reassuring to know that basic checks have been carried out.

 

[Adrian]

The current clinics offering CBT and GET have patients attending who may feel that they are benefiting and some who want to hear that there is a cure (even in reality that may only be a few). If clinics close because of a backlash by staff on the new Guideline or if they continue to operate without CBT as a cure for unhelpful beliefs etc and GET as a cure of patients deconditioning then patients currently having treatment and those on waiting list may complain. They could potentially be manipulated into making complaints about the change to the service(s).

As I understand it BACME who are closest to the clinics have said they will implement the guidelines. I also have a suspicion that many of the therapists don't push GET although that is based on very very little info - but I do suspect the individual therapists know it doesn't work and just try to give sensible advice.

It would be interesting to hear from people who have been to clinics in the last 2 or 3 years to know their experience

 

[rvallee]

This. The question is - is IAPT/ MUS/ PPS simply being considered as too big to fail ?

It's more of a "can't put the toothpaste back into the tube" kind of thing. It is really big, the modern psychosomatic project is a multi-billion dollar boondoggle employing thousands of people doing easy mindless work without oversight. But more than anything it has effectively blocked real progress, destroyed millions of life in the process. Essentially the last ideology to be influential enough to displace science where it rules.

This is not something that can be walked back, it's too much to bear, so the obvious choice is to continue with the failure because until people admit it was a failure, the failure never gets acknowledged. On top of the massive amounts wasted, lots of sunk cost fallacy there, it's that it simply pushes back all the oversight and accountability that it had to be exempted from. Bit like cartoon physics, as long as they don't look down they don't fall down, or at least don't have to suffer the sight of the millions of bodies they chucked off the cliff for a bullshit vanity project.

After all it's "just business", the business of fake rehabilitation, the worst features of alternative medicine and modern medicine.

 

[Invisible Woman]

It's more of a "can't put the toothpaste back into the tube" kind of thing. It is really big, the modern psychosomatic project is a multi-billion dollar boondoggle employing thousands of people doing easy mindless work without oversight. But more than anything it has effectively blocked real progress, destroyed millions of life in the process. Essentially the last ideology to be influential enough to displace science where it rules.

My worry is that if it isn't reined in soon then other services, seen as being more expensive because they actually provide expert medical care, may be closed in favour of IAPT.

Once they're closed it will be very difficult to get them back. Expertise may be lost to the NHS if consultants move to more private practice or there are fewer jobs available for young consultants in certain specialities. So they'll train and move abroad or train in something else. So even if you regain funding, you won't get the staff

Regaining funding will be very difficult with the usual sleight of hand tricks that go on. One example of this tyle of thing is from a decade or so ago where the then Minister for Health (Stephen Ladyman I think) claimed that there was no need for allergy clinics in the South West (despite appeals within the NHS for just that). The reason he gave -as there were no waiting lists there was obviously no demand, conveniently ignoring that yiu won't have waiting lists for clinics that don't exist. I could see this tactic being dusted off and used.

They would become "the only show in town" to borrow a phrase.