Bad news to the MEA from NICE: no review considered necessary

[A.B.]

TL: DR - NICE aren't interested in protecting the Lancet or PACE, they're motivated by protecting their own reputation. At some point, in order to protect that reputation, they'll have to do an about-face on CBT and GET - but it probably won't be today.

PACE, CBT/GET, the psychogenic view of CFS will eventually be seen as a shameful embarassment, and everyone will try to distance themselves from it.

 

[Stewart]

I've just read David Tuller's latest blog - thread here - and I think getting a statement from the CDC explaining the reasoning behind their decision to drop CBT and GET is the single most useful thing that could be done before the NICE consultation closes in 10 days time. Do we know of anyone that has an existing line of communication with them?

 

[Londinium]

'm not inclined to believe in conspiracy theories, just because having worked near the heart of government I know how difficult it is to keep any kind of machination on this scale a secret. The reality is that government leaks like a sieve and if there really was a grand conspiracy people would have talked by now and incriminating documents would have made it into the public domain. I think the more unpalatable truth is that when it comes to ME/CFS there are a lot of organisations - and individuals - who keep making bad, self-interested decisions independently of each other.

I agree with this 100%. Occam's razor says we shouldn't believe in conspiracy when a scenario can be equally explained by plain good old-fashioned incompetence. And even that may be too harsh - having worked across the public and private sector a lot of poor decision making can be explained simply by people having not enough time to do things properly. We should be wary of framing this as some kind of explicit conspiracy as it plays into the 'ME patients are all unhinged' paradigm.

People take shortcuts - e.g. NICE doing a review of abstracts only - and rely on heuristics. The fact that PACE was written by a number of esteemed medical practitioners rather than a collective of faith healers means that it will - rightly or wrongly - get more credence given to it by NICE than if were by the latter. (Even if it suffers a lot of the same trial shortcomings one often sees in 'alternative' medicine).

Should we expect better? Yes. But it needs us to keep plugging away, explaining the scientific shortcomings (IMHO responses need to focus on the FINE trial and the fact that CBT/GET gives a null result on long-term objective outcomes, which the NICE paper doesn't really engage with). I don't however give any credence that NICE is somehow in cahoots with the DWP or whoever. More likely is that it is staffed by humans. And humans (except me, of course ) are flawed.

 

[Sean]

It's a fine line between conspiracy and plain old desperate arse-covering.

 

[AndyPR]

http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-10/HL637/

 

[Daisymay]

View attachment 22427
http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-10/HL637/

Three cheers for the CoM for trying to get the info, though they probably wont give it to her but it is important to try. Although maybe as a member of the House of Lords they might have to let her see who's involved?

 

[arewenearlythereyet]

It's a fine line between conspiracy and plain old desperate arse-covering.

Money saving is often also a big motivator though. This can be dressed up as "getting more value for money" or " being more efficient" but at the end of the day it's still about spending less. I don't think this is a conspiracy....it's out in the open...we have had budgets cut in real terms?

I think this has had its part to play. Money, power over others and pride generally are the main motivators that influence people's decision in these things.

 

[Large Donner]

TL: DR - NICE aren't interested in protecting the Lancet or PACE, they're motivated by protecting their own reputation. At some point, in order to protect that reputation, they'll have to do an about-face on CBT and GET - but it probably won't be today.

Who do you think is advising NICE. How exactly do we get spin after spin in the media for example via the SMC, you think there is no rubbing shoulders and influence going on all over the place?

Do you think the BPS crowd don't deliberately organise warped coverage in the media via the SMC on ME, they dont use the same underhand tactics in all areas of influence and including government health policy?

Its just one big round of unorganized stupidity that got us where we are over 30 decades?

A combination of both deliberate organised influence I can see but just one big accident of unconnected cocoon self preservation?

Political suitability, favours and influence dont affect policy in health and other areas of life..

Really?

 

[Large Donner]

I've just read David Tuller's latest blog - thread here - and I think getting a statement from the CDC explaining the reasoning behind their decision to drop CBT and GET is the single most useful thing that could be done before the NICE consultation closes in 10 days time. Do we know of anyone that has an existing line of communication with them?

Peter White may have a load of connections there.

But seriously that is a good idea even though NICE clearly cite that only British evidence counts.

NICE exists to "give full value for money for the health service for all patients of all illnesses", but the problem with that is that they like to put their fingers in their ears if the equation means for example that a new treatment for any given illness takes away from the overal health budget.

This means they like to ignore increased costs for illnesses they consider not worthy and therefore squeezing the cancer budget for example.

This also makes them ripe for buying into cheap treatments and easy to influence politically with things like CBT and GET.

On top of that they dont like to offer nothing because they think it makes them look pointless, like many doctors who just have lost the ability to say, "I dont know".

I think a big point that alot of people miss is that it only takes a small number of certain types of people to get together and scheme to shape policy simply BECAUSE of layers of ignorance and stupidity below them, not despite of it.

A few insiders sprinkled amongst the stupid and the ignorant doesn't damage the cause either.

 

[AndyPR]

Peter White may have a load of connections there.

But seriously that is a good idea even though NICE clearly cite that only British evidence counts.

NICE exists to "give full value for money for the health service for all patients of all illnesses", but the problem with that is that they like to put their fingers in their ears if the equation means for example that a new treatment for any given illness takes away from the overal health budget.

This means they like to ignore increased costs for illnesses they consider not worthy and therefore squeezing the cancer budget for example.

This also makes them ripe for buying into cheap treatments and easy to influence politically with things like CBT and GET.

On top of that they dont like to offer nothing because they think it makes them look pointless, like many doctors who just have lost the ability to say, "I dont know".

I still think that we don't work the value-for-money argument hard enough here in the UK. In times when NHS budgets are being slashed, why are they funding "treatments" that, at absolute best, are theoretically beneficial for a minority of patients, when the broadest of selection criteria is used.

Given that, for actual ME patients, no current treatment is better than having GET/CBT forced on them, why not point out that more strict criteria, that is more likely to identify actual ME sufferers, will sort out those patients who won't respond to GET/CBT, thereby reducing the numbers that the, currently named, ME clinics have to deal with. Rename the clinics to Fatigue clinics, send those who are "only" suffering from chronic fatigue there, success rates will rocket at the clinics with the ability to reduce the size of the services.

 

[dangermouse]

the symptom list has serious omissions, especially in relation to characteristic symptoms associated with autonomic dysfunction – eg orthostatic intolerance and/or hypotension and postural orthostatic tachycardia syndrome (POTS).

My GP looks blank when I describe my symptoms of OI. He was actually very attentive when I explained how I cope with it. I mentioned compression garments, contracting calf muscles and gluteals and making fists. Increasing fluids and adding salts. He said he can't imagine how difficult it is to have to live as I do. I think he feels frustrated (at times) that he can't do more. He was also interested (and unaware) when I told him about Fluge & Mellor and Ron Davis, though I couldn't tell him much as I was fading fast.

 

[Large Donner]

I still think that we don't work the value-for-money argument hard enough here in the UK. In times when NHS budgets are being slashed, why are they funding "treatments" that, at absolute best, are theoretically beneficial for a minority of patients, when the broadest of selection criteria is used.

Given that, for actual ME patients, no current treatment is better than having GET/CBT forced on them, why not point out that more strict criteria, that is more likely to identify actual ME sufferers, will sort out those patients who won't respond to GET/CBT, thereby reducing the numbers that the, currently named, ME clinics have to deal with. Rename the clinics to Fatigue clinics, send those who are "only" suffering from chronic fatigue there, success rates will rocket at the clinics with the ability to reduce the size of the services.

Your reasoning lies within logic, your requirement for a logical answer lies within the "conspiracy". Stupidity is inefficient as a factor to be the whole explanation.

 

[Large Donner]

@Stewart

and I think getting a statement from the CDC explaining the reasoning behind their decision to drop CBT and GET is the single most useful thing that could be done before the NICE consultation closes in 10 days time

Thinking further on your quote its actually very interesting because even though NICE claims they only do British evidence the CDC decision to drop CBT and GET for ME must have been based on a review of the numerous British papers that have been streaming out since PACE and also including PACE.

No doubt though they will come up with something like, "well the CDC don't understand British scientific papers".

 

[Stewart]

Peter White may have a load of connections there.

Do you want to ask him, or should I?

Do you think the BPS crowd don't deliberately organise warped coverage in the media via the SMC on ME, they dont use the same underhand tactics in all areas of influence and including government health policy?

Its just one big round of unorganized stupidity that got us where we are over 30 decades?

I'm certain that the BPS crowd do everything they can to influence media coverage to promote their beliefs. They are (unfortunately) a very influential crowd with their fingers in a lot of pies who are held in great esteem by the rest of the British Establishment. For better or worse (and we all know it's for worse) their opinions are given great weight by decision makers. I fully expect that if we ever get to find out who made up the NICE expert committee that recommended 'no change' we'll find that some of the usual suspects were on there.

But that's not the same as saying there's an active conspiracy in which NICE is a willing participant. I don't think there's a smoky back room somewhere, where Simon Wessely, Richard Horton and Andrew Dillon (CEO of NICE) sip whisky, puff on expensive cigars and plot their next steps to ensure that PWME are kept under the cosh.

As you put it:

I think a big point that alot of people miss is that it only takes a small number of certain types of people to get together and scheme to shape policy simply BECAUSE of layers of ignorance and stupidity below them, not despite of it.

I completely agree with that statement. But where I suspect I disagree with you is that I think its the BPS/SMC gang alone who are the schemers - with an agenda that they push at every opportunity, using all the tools at their disposal. Because they are well connected and held in high regard there are a lot of tools for them to use. Rightly or wrongly (and again - it's wrongly) organisations like NICE consider them experts in their field and erroneously trust their judgement when it comes to important responsibilities like formulating ME/CFS guidelines.

Whether its through ignorance or stupidity - or just organisational inertia - bodies like NICE definitely play a key role in enabling the BPS gang to keep peddling their crap - but that doesn't mean that those bodies are *knowingly* complicit. I think it's far more likely that they've been sweet-talked by a bunch of plausible-sounding snake oil salesmen, and that the scales have yet to fall from their eyes.

 

[trishrhymes]

This is how I read the situation, from memory from bits of conversations in here. Do tell me if I've got it wrong.

Over the last few months hope had risen among some of us that a real review of the guidelines was imminent and that there were new developments they wanted to wait to take into account. We foolishly assumed that meant real scientific research like the rituximab trials, and Ron Davis's work and others and the fact that the CDC was reviewing its guidelines. All very hopeful.

Now we find that there was indeed a new development in the pipeline, but it was the GETSET trial published in the Lancet last month. And we also discover that they only read the abstracts of trials, so this is gist of the new info they got:

'No serious adverse reactions were recorded and other safety measures did not differ between the groups, after allowing for missing data. GES is a safe intervention that might reduce fatigue and, to a lesser extent, physical disability for patients with chronic fatigue syndrome.'

Job done. No further action needed.

 

[Stewart]

@Stewart

Thinking further on your quote its actually very interesting because even though NICE claims they only do British evidence the CDC decision to drop CBT and GET for ME must have been based on a review of the numerous British papers that have been streaming out since PACE and also including PACE.

No doubt though they will come up with something like, "well the CDC don't understand British scientific papers".

NICE have made it clear that they've read the AHRQ report - if only to dismiss it - so their preference for UK papers obviously isn't absolute.

My thinking is that a statement from the CDC which highlights a very recent change in their guidance (ie: something that Expert Group *can't* have considered already) and says words to the effect of "We've looked at all the same evidence you have, and have concluded there's no justification to keep recommending CBT and GET" would be the most persuasive single piece of evidence in terms of forcing NICE to concede a full review. It would call into question the reliablity of the expert group's conclusions and recommendations, and would be very awkward for NICE to ignore.

 

[Deepwater]

I'm not inclined to believe in conspiracy theories, just because having worked near the heart of government I know how difficult it is to keep any kind of machination on this scale a secret. The reality is that government leaks like a sieve and if there really was a grand conspiracy people would have talked by now and incriminating documents would have made it into the public domain. I think the more unpalatable truth is that when it comes to ME/CFS there are a lot of organisations - and individuals - who keep making bad, self-interested decisions independently of each other.

In the case of NICE, their big thing - their raison d'etre - is to produce evidence-based guidance, through transparent processes which are characterised by their independence and objectivity. What they seem unable to recognise is that their systems are not fool-proof, and that once error or bias starts to creep into the guidance they produce there is a good chance that subsequent reviews will reinforce it, not correct it. The more time and money the NHS spends legitimising CBT and GET as useful interventions (on the basis of existing NICE guidance), the harder it will be to find NHS experts who are willing to declare that the emperor isn't wearing any clothes - even if that's what the latest evidence suggests.

Once NICE recognises - and I don't think they're there yet - that there's a considerable gap between what any truly independent analysis of the evidence (including cost effectiveness) says and the conclusions that their own expert committees are giving them, the only step open to them is to accept stakeholder feedback/criticism, overrule the committee and order a full review of the guidance. The problem is that doing this would mean deviating from their established proceedures and acknowledging that their experts have got it wrong - and that would (in NICE's eyes) call into question their own transparency, independence and objectivity. So it's easier in the short term for them to turn a blind eye to the problem, insist their processes are robust and their experts are correct - and in so doing create a bigger problem for themselves down the road.

TL: DR - NICE aren't interested in protecting the Lancet or PACE, they're motivated by protecting their own reputation. At some point, in order to protect that reputation, they'll have to do an about-face on CBT and GET - but it probably won't be today.

I don't think the concept of the whole thing being sewn up requires a conspiracy theory in the sense you suggest, and I too doubt that either NICE as a body or politicians have much clue about the whole issue. But the bit of NICE that deals with ME was set up, for whatever reason (and there may have been some level of conspiracy at that point), to back the psychiatric model of the illness. There were, after all, all those classified documents, which actually haven't been released in full. Some are so heavily redacted as to be unintelligible.
Anyhow, that set-up is now self-perpetuating, albeit they have to pay lip service to WHO guidelines. The problem screams out from the list of stakeholders - so many psychiatric bodies, physiotherapy, occupational therapy, various woo therapy bodies - all of these stand to lose patients if the current official model of ME is ditched. And who are NICE likely to ask to for assurance on the truth about ME? why, the BPS ME "experts" who are ready and waiting for them. Who will politicians ask? their own appointed consultants Wessely and Sharpe, I suppose. There will be members of the panel this time, as there were last time, who will be longstanding proponents of the BPS model, probably including Esther Crawley again, who will be aggressively protecting their own careers and reputations.
Those of us in the UK have seen how the BPS psychiatrists have gone about getting Fleet Street in their pocket via the Science Media Centre and in some cases personal contacts with journalists. They are not idle and superficial in their approach, whatever may be said of government departments and quangos.
This is why I believe it will take public pressure to galvanise NICE, the NHS, the government and any other arm of the Establishment into making any sensible changes.

 

[Large Donner]

Interesting comment from @Jonathan Edwards on the Tuller thread.....

Doctors cannot be blamed for not speaking out. If they do they get weeded out and the situation is worse. The reason I can write about PACE is that, unlike some others, nobody can ring up my employer and suggest a change of contract might be in order - which as we know has happened more than once over PACE.
http://forums.phoenixrising.me/inde...rror-the-cdc-drops-cbt-get.52748/#post-873862

I would like to hear more about this and if it can be done to doctors who else it can be done to. This statement seems to clearly add evidence to the theory that its not just one big ignorance disaster.

 

[medfeb]

This point should be made strongly since NICE's diagnostic criteria say PEM but none of the CBT/GET studies take PEM seriously.

I completely agree on your point here. Their dismissal of AHRQ's finding of a lack of evidence once Oxford was excluded was stunning.

But picking on NICE for the moment - yes, it says post-exertional malaise or fatigue is required but then it says "physical or mental exertion make symptoms worse" is optional. PEM by CCC, ME-ICC, and IOM definitions includes symptom exacerbation following exertion. So NICE either doesn't know what PEM is or else doesn't take it seriously either.

 

[Barry53]

1.4.6.3 Although there is considerable support from patients (particularly people with severe CFS/ME) for the following strategies, healthcare professionals should be aware that there is no controlled trial evidence of benefit:

• Encouraging maintenance of activity levels at substantially less than full capacity to reserve energy for the body to heal itself (sometimes known as the envelope theory).
  
  
• Encouraging complete rest (cognitive, physical and emotional) during a setback/relapse.

That's because there have been no scientifically valid controlled trials that have investigated it properly.

It's a bit like the way politicians love saying "There is no evidence to suggest that ...", and I find myself muttering at the TV "Well that's because you've bl**dy well done nothing to try and find any evidence!"