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

work very well at alleviating symptoms(?) but not claiming to achieve recovery (which implies cure the underlying problem)(?)

Although they changed their definition of recovery (P. White):

"One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT."

https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research

 

There is another issue here. Many of the clinics/ME providers are no longer "NHS" .......but CIC's Community Interest Companies, Federations of GPs (CICs)- ie essentially "privitised" medicine!
They are often no better than "private" medicine. GPs are "private" under NHS contracts as are others.
So there is a blurring of the boundaries about COIs too...

 

Eeeww! shudder. Only skimmed it but ugh, just ugh.

My old Humanistic therapist told me once that they privately called psychoanalysts 'psycho_Anal_ists', but now i'm the one gossiping out of turn.

Yikes!
And also thank you for making me, once again laugh out loud.

the gaslighter's charter

 

The word 'Up' comes to mind ... Stitch Up, Cock Up, F' Up, B' Up, What's Up, etc.

 

[My bold]

Yep. Keep it wholly well reasoned and unemotive, no matter how very tempting it will be to drift into a rant. Anything else would harm our credentials.

 

And we know what's best for you ... because we know what's best for you ...

 

I'd read Munafò's replies as polite evasion. He is at Bristol, and I do not see him as remotely on-side or willing to speak out about the way patients have been condemned for pointing out problems with the research from people like Crawley.

I think that any worthwhile NICE guidelines will be attacked by the UK Establishment however they were written (unless we manage to get a major change from places like Cochrane before they're released). I'd much rather have the Establishment attacking NICE for producing good guidelines than patients having to attack NICE for producing crap guidelines.

People were told in advance that NICE was aware of the problem of having the committee made up of people from NHS CFS clinics, and so they'd be looking to appoint independent people. If they thought in advance that their rules would mean that they could only appoint people like this, then they should have been clear about this in advance and sought feedback from stakeholder on how to manage this problem.

No-one can really know, but to me this looks more like stitch-up than cock-up. Talk is cheap, and it's in the interests of the Establishment to emphasise how very serious they are about taking patient concerns on board, engaging with 'experts by experience', etc. Stringing people along and minimising conflict, but ensuring that the real power lies with those who have an interest in ignoring and downplaying the problems with the way patients are treated.

The thing that makes me think that they may not be dishonest, but may just be massively incompetent, prejudiced and out of their depth, is that a skilled stitch-up would have involved a committee less clearly biased towards junk-science and the manipulation of patients. On this more optimistic view, the people selecting the NICE committee must have still such a distorted view of reality that they think this is a fit group of people to devise new guidelines for ME/CFS, and patients should have to put up with them. That is far from reassuring.

 

Are we now depending on CDC to produce good guidelines?

 

At the end of the day, any "arms length " non government department will bow to others in the pecking order of NGD- NHS England, NHS Improvements and NHS Public Health- it will respond to their priority list which is IAPT etc for long term chronic physical conditions...........it's all a political issue and doing the present Government bidding. Privitisation of the NHS, market forces and Theresa's big bucks ££££ money for "mental health and wellbeing".
I am thinking we can complain all we like, but at the end of the day, we have to persuade our local CCGS that NICE guidance must be taken to account and then rejected in favour of a better way, like the Canadian Consensus Criteria
- That's what has happened here since 2007 in Suffolk's ( PCTs) CCGS!
We have commissioning "on our side" after going through due process and we have dealt with and discharged NICE in a very specific way! That was discussed, accepted and minuted last Friday at the Joint Health Overview and Scrutiny (Waveney and Norfolk) plus Suffolk (7 CCGS reaching a population of about 2.3 million people) which debated ME for over 1.5 hours.....

 

Wow! well done

 

My hope is that Carol Monaghan and other MPs will be able to bring the errors of PACE, and other BPS studies to light.
Hopefully the stranglehold that Wesseley and friends has is not pervasive enough to close this down...

 

I think we need to be writing individually to Nice and our MPs.

My DH stepped up and has just posted our letter to Sir Andrew.

Then we need to use the Parliamentary process to the greatest effect to support Carol and others in their efforts on our behalf.

 

Trying to close Carol Monaghan down is not something I would recommend anyone try!!

 

Speaking of high quality arguments:

If we apply pharmacological clinical trials standards of evidence to PACE, we can reject it right away due to lack of blinding. But psychotherapists might find that unfair.

My understanding is that PACE is uninterpretable even if psychotherapy clinical trials standards are applied, because they failed in making sure that nonspecific effects were evenly balanced between treatment groups, and made deliberate choices that would introduce obvious bias. For example the CBT/GET groups were given higher expectations about treatment, CBT/GET actively tried to change cognition, and there was the newsletter. This happened during the course of treatment while (my understanding) is that they measured expectations only at baseline. Even at baseline the SMC group had significantly lower expectations. The end result is that nobody can say whether (for example) the better results of CBT in comparison to SMC is due to an imbalance in nonspecific effects or due to CBT being a specific treatment for CFS. The results are uninterpretable.

We don't even have to get to the protocol deviations that inflated the results.

 

NICE said their guideline is not fit for purpose, yet they are happy to fill their committee with those who are seemingly happy to prescribe CBT/GET and the behavioural model of ME. I've not heard of any of these doctors or their ilk standing up and agreeing with NICE that the guidelines aren't fit for purpose, that they have any concerns about there effectiveness, appropriateness or safety of CBT/GET.

 

It's a truly exceptional situation in that it's completely abnormal that most of medicine would stand against the interests of a group of patients. It's just one of those things that aren't supposed to happen so the normal rules naturally create a broken process.

Whether the rules have to be adapted to recognize this, and we are not alone in this situation although it's rare, or exceptions be made precisely because the prior work was flawed and harmful, is unclear, but I think here we are hindered by institutional protection.

The current guidelines are a fetid pile of garbage. Having implemented those and insisted they did not need updating last year make it very hard for them to acknowledge how wrong they have been. They would have to recognize they have committed systemic harm despite strong and sustained protests from patients telling them so.

But clearly the normal process is unable to perform its function and is being corrupted by those who want to protect their reputation and evade accountability. The interests of patients are simply not a concern to NICE. Too much covering of asses.

 

Independent statisticians must be called to testify during the NICE review the review is supposed to be evidence based information not about anecdotal nonsense.

"We do this and we do that in our clinics", is not evidence. The published evidence is what is on trial here and now there are countless counter publications to PACE and Cochrane. Especially the original protocol reanalysis of PACE (the definitive trial).

I simply don't accept the argument that NHS clinicians can vote on their own practices. It's got F all to do with the practices it's to do with the scientific evidence.

We are shifting well away from the issue that NICE is their to review scientific evidence, they simply cannot absolve their responsibility to do so by ignoring the potential for weighted panels and presuming those people are even in a position to bring forward evidence unchallenged.

Its beginning to sound like they are just there to invite a "random" bunch of NHS employees along and relinquish their responsibility down to a coffee meet feel good back slapping event.

We need to stop this, "well it has a process and due process has to be seen to be done".

That's just bollocks, NICE exist with the sole responsibility to review scientific evidence. Therefore they MUST be fully committed to challenging claims and fully equipped to sniff out bullshit and if they don't accept that fact then the individuals who have been tasked to do this should face consequences even if it is civil action via the courts.

We need to keep reminding NICE they need to review the evidence and we need submissions that challenge PACE etc and make it clear that the ultimate ongoing responsibility lies not with the appointed committee but the chair and the people above.

 

The government accepts both the WHO and SNOMED classifications of ME/CFS. NICE should be accepting the government's position on classification of ME/CFS as a neurological disease, not behavioural and carry out the review of the guidelines with this in mind.

1. NICE is accountable to and is funded by the Dept of Health.

https://www.nice.org.uk/about/who-we-are

" In April 2013 we were established in primary legislation, becoming a Non Departmental Public Body (NDPB) and placing us on a solid statutory footing as set out in the Health and Social Care Act 2012. At this time we took on responsibility for developing guidance and quality standards in social care, and our name changed once more to reflect these new responsibilities.
As an NDPB, we are accountable to our sponsor department, the Department of Health and Social Care, but operationally we are independent of government. Our guidance and other recommendations are made by independent committees. The NICE Board sets our strategic priorities and policies, but the day to day decision-making is the responsibility of our Senior Management Team (SMT)."

2. The Dept of Health accepts ME as a neurological disorder (letter dated 11th February 2004 to Lady Mar from Lord Warner, Parliamentary Under Secretary of State, Department of Health; this was confirmed on 2nd June 2008 by Lord Darzi, Parliamentary Under-Secretary of State, Department of Health: “My Lords, I have acknowledged that CFS/ME is a neurological condition… as I said earlier, (it) is a neurological rather than a mental condition” (HLPQ).

3. NICE is required to accept the WHO ICD classification of ME as a neurological disorder. When the last Guideline CG53 was being prepared, even though NICE received over 11,000 pages of submissions about it and despite ostensible patient representation on the GDG, the Chairman of the GDG, Professor Richard Baker, failed in his remit to uphold Government policy by permitting influential members of the GDG to refuse to accept the WHO classification of ME/CFS as a neurological disorder as directed by NICE itself: on 10th September 2002 the Communications Director (Anne-Toni Rodgers) of NICE Special Health Authority issued a Communications Progress Report which, at section 2.7.1.5 was clear: “The ICD-10 classification is used for the recording of diseases and health related problems…The WHO produces the classifications and ICD-10 is the latest version…the classification codes are mandatory for use across England”.

4. ME/CFS classified in SNOMED under "Disorders of the Nervous System".

http://browser.ihtsdotools.org/?per...g/api/v1/snomed&langRefset=900000000000509007

SNOMED terminology has been mandatory for use in NHS primary care since April 2018.

https://dxrevisionwatch.files.wordp...snomed-ct-and-chronic-fatigue-syndrome-v1.pdf

"SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings. "

"Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020. "

 

see this thread for #MEAction Scotlands manifesto
https://www.s4me.info/threads/meaction-scotland-launch-their-manifesto.6412/#post-117148

exactly what is needed.

 

Right now, the rhetoric in BPS/MUS thinking is defensive: "yes, there are biological abnormalities, but GET and CBT are effective and commonsense ways to improve symptoms. They're used in other illnesses and they work well. Why should ME be any different? PwME have been told their illness is in their head so they're naturally defensive. But most appreciate our help. It's only a few activists who get worked up."

This is distasteful. BUT.

Here's what the prevailing narrative used to be:

"ME patients are the undeserving ill", they are hypochondriacal, hysterical. They want to be sick. They need attention. Secondary gains. The idea that ME is burnout or just fatigue to the nth power, and that recuperation and recovery is easy if you have the will. If you push them hard enough, if you refuse to help them accommodate to disabled life, they'll have no choice but to improve. If they don't get well, they don't have the will -- they aren't trying hard enough.

I expect some on the committee to tout their negative or disdainful views towards patients as a badge of honor: that they tell it like it is, unlike these other wafflers and apologists. They will see virtue in being dogmatic and consider holding their position without compromise to be a mark of strength. They will believe themselves brave for standing up 'in spite of activist pressures'.

Every movement forward has a backlash. How we manage this backlash will dictate how things go for the next few years. I'm crossing my fingers we will handle it well, and working hard to help.