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

[Daisymay]

We must remember here that it's not just the question of PACE and that the CBT/GET evidence base for NICE guidelines in the first place was extremely poor, ALL of the CBT/GET research is based on a false premise ie ME is behavioural which the IOM review of 9000 research papers showed to be wrong therefore this decision is seen to be even worse!

At what point does it become a criminal matter for a government body, and those who came to this decision, to promote treatments which are based on scientifically invalid treatments which patients find makes them worse?

 

[Large Donner]

We need NICE to add a disclaimer if they decide not to remove CBT and GET. It's no good just saying that patients don't have to take the recommended treatments, when they are the ones recommending them. People on the reviewing committee need to state clearly that the treatments are extremely controversial and have not been proven to be effective. The only alternative is to state the opposite. I think a massive patient petition should be taken to the consultation officially so they cannot just turn around and say, "we did not know." They need to be left with no option for lazy decisions allowing them to pass the buck later.

Patients should never expect that they cannot take official body recommendations without scrutiny of obvious harm or efficacy as many patients blindly do so in good faith.

 

[Barry53]

If the decision turns out to do nothing, then I dearly hope some folk will be properly held to account when this whole ME/CFS PACE debacle comes to a head, as I'm convinced it is going to.

 

[RogerBlack]

There are 49 CFS clinics in England.
Most of these are delivering primarily CBT and GET, and have several staff.

If you take the likely operating costs of 5 staff, and the fact they're mostly delivering placebo (at best) treatment, this is well over the cost of PACE per year.

 

[Seven7]

I think the pressure is needed, contact the press (ME friendly) and capture signatures.

 

[AndyPR]

Given how hard they are fighting to keep their theories alive, I'd be absolutely amazed if the review panel wasn't stuffed full of BPSers, or at least their supporters. As Charles indicates, I believe it's going to take a ridiculous amount of scientific evidence before we starting seeing any change of heart with NICE.

 

[slysaint]

There are 49 CFS clinics in England.
Most of these are delivering primarily CBT and GET, and have several staff.

If you take the likely operating costs of 5 staff, and the fact they're mostly delivering placebo (at best) treatment, this is well over the cost of PACE per year.

I suspect that once the MUS 'treatment program' is rolled out CFS or fatigue clinics might become 'redundant'.

 

[RogerBlack]

I suspect that once the MUS 'treatment program' is rolled out CFS or fatigue clinics might become 'redundant'.

The GET part at least, yes. The CBT part is basically precisely the same.

 

[Stewart]

Details of who is on the panel that has been reviewing all the published evidence are not available

I think this is an unsurprising decision, given the likely background of anyone that NICE would consider an "expert" in ME/CFS. If you're currently working in an NHS specialist ME/CFS clinic you're hardly likely to support the notion of NICE downgrading/removing recommendations for CBT and GET - why would you put your colleagues out of a job and restrict your own future career prospects?

We just have to hope that a sufficient number of the higher-ups at NICE have genuinely taken onboard the new evidence about the ineffectiveness of CBT and GET - and the possible harms to patients - and that they're prepared to overrule the recommendation that they were always going to get from the 'experts' and proceed with the review. There wouldn't seem to be much point in them bringing the guideline review forward if they intended to just go along with what the 'experts' were always going to tell them - that's not going to make the criticisms of PACE (and CBT and GET more generally) go away, and it will just implicate NICE more fully in the whole sorry mess.

Listening to the supposed 'experts' is how Britain has ended up increasingly at odds with the rest of the world in our understanding of this condition. Hopefully there are people at NICE who recognise this is an opportunity for them to distance themselves from the mistakes of their predecessors. Hiding behind the judgement of the 'expert' panel might provide them with a short term justification for maintaining the status quo, but it could create much bigger problems for them in the future. Let's hope self-interest trumps short-term convenience.

 

[alex3619]

Has NICE failed a test of competence?

 

[lilpink]

Would a FOI help? How can patients be confident that the panel is free from psychiatric/PACEsupporter bias?

This is outrageous frankly.

It's absurd isn't it? It's bordering on a kanagroo court. It's surely how things happen in apocalyptic totalitarian states? The notion of 'democracy' in the UK is laughable.

 

[lilpink]

There are 49 CFS clinics in England.
Most of these are delivering primarily CBT and GET, and have several staff.

If you take the likely operating costs of 5 staff, and the fact they're mostly delivering placebo (at best) treatment, this is well over the cost of PACE per year.

It's a worry the MEA still have clinics such as KCL, Barts and Crawley's Bath Clinic on their list.
http://www.meassociation.org.uk/specialist-services-throughout-the-uk/

They do suggest: "If you spot any mistakes or wish to notify us of any omissions, please email our head office.". I think most of us could come up with a whole list of 'mistakes'. This is an ME patient charity essentially guiding people to clinics which are known to be CBT/ GET based. (I do not consider this comment 'off topic'. )

 

[Londinium]

It will be interesting to see what basis is given when proposing no update. The question is whether NICE will state 'we reviewed studies x, y and z and didn't view these as changing the recommendation because...' which would at least give respondents something to work with. My guess however is we'll get a simple sentence or two that just says 'we identified no evidence' without noting which studies they reviewed (e.g. Wiltshire et al on PACE? Phase II Rituximab?). Then if the RituxME and/or CycloME Part A trials come good we'll get a response of 'we've only just reviewed ME/CFS'.

Jesus wept.

 

[Invisible Woman]

Then if the RituxME and/or CycloME Part A trials come good we'll get a response of 'we've only just reviewed ME/CFS'.

I reckon this is exactly what they will do. Too many of their pals stand to lose out if the current NICE recommendations are overturned.

 

[AndyPR]

I could see it going

• no review
• postpone for another 2 years
• this won't be long enough for another stage 3 trial (I'm assuming?)
• so assuming that the Lancet can continue ignoring calls for retraction of PACE
• postpone for another 2 years

This should allow the senior BPSers to reposition themselves and/or to retire with full pensions while the junior acolytes will be left to duck and dive as best they can on their own.

 

[RogerBlack]

It's a worry the MEA still have clinics such as KCL, Barts and Crawley's Bath Clinic on their list.

I was basing this number of a recentish (2014) paper on provision of services, not MEA.
https://www.ncbi.nlm.nih.gov/pubmed/24984956

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise.

 

[lilpink]

I was basing this number of a recentish (2014) paper on provision of services, not MEA.

I appreciate that. I wasn't insinuating that you were. But I think my response illustrates a very worrying double standard whereby the MEA insist we take this survey and assessment of CBT and GET seriously http://www.meassociation.org.uk/2015/05/23959/ but on the other hand advertise clinics which use these 'therapies' without any indication of how dangerous they could turn out to be at the point the clinics are referenced. Given it could possibly (I don't know?) cause legal difficulties to actually warn patients at each clinic reference that they could harm people with ME, wouldn't it be better to simply not list those that use these modalities instead? To what extent is a patient charity responsible for the harms that might result from people using their reference facility and making choices without full understanding of the issues involved? I imagine many who access patient charity websites are often new patients who haven't had years of experience of the shenanigans that surround the BPS school and would therefore be unable to make a properly informed choice, but might rely on the quality of the information supplied by the MEA?

 

[Barry53]

Has NICE failed a test of competence?

Is that a rhetorical question?

 

[Large Donner]

I think they are at the point where you start giving awards out to your mates.

 

[Stewart]

I appreciate that. I wasn't insinuating that you were. But I think my response illustrates a very worrying double standard whereby the MEA insist we take this survey and assessment of CBT and GET seriously http://www.meassociation.org.uk/2015/05/23959/ but on the other hand advertise clinics which use these 'therapies' without any indication of how dangerous they could turn out to be at the point the clinics are referenced. Given it could possibly (I don't know?) cause legal difficulties to actually warn patients at each clinic reference that they could harm people with ME, wouldn't it be better to simply not list those that use these modalities instead? To what extent is a patient charity responsible for the harms that might result from people using their reference facility and making choices without full understanding of the issues involved? I imagine many who access patient charity websites are often new patients who haven't had years of experience of the shenanigans that surround the BPS school and would therefore be unable to make a properly informed choice, but might rely on the quality of the information supplied by the MEA?

Forgive me if I'm misunderstanding your complaint lilpink, but when I click on the MEA link you included in your earlier post...

http://www.meassociation.org.uk/specialist-services-throughout-the-uk/

...there's a pretty prominent disclaimer before you get to any contact details:

PLEASE READ THIS STATEMENT BEFORE BEGINNING YOUR SEARCH

Most of the NHS clinics for people with ME/CFS in this MEA directory base their management programme on the possible use of cognitive behaviour therapy (CBT) and/or two differing approaches to activity/energy management known as graded exercise therapy (GET) and Pacing.

We suggest that you download and read the summary of the recommendations from the MEA ‘patient evidence’ report on CBT, GET and Pacing before deciding which of these approaches to management you think would be acceptable and may be helpful in your situation.

You could also take a copy of the summary of the MEA Report to the clinic if you have any questions or concerns about the sort of management programme that is being offered or recommended – if it involves CBT or some form of activity management.

In line with what is known as informed consent, people should not be coerced or persuaded into taking part in any form of management (drug or non-drug) where they have concerns over acceptability, effectiveness or safety – all of which should be discussed between doctor and patient before a decision on management is made.

(It's possible this text was added fairly recently - the webpage was updated on 3rd July - so if you're looking at a cached version of the page, you may not have seen it)