MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

[Esther12]

Can it really get any worse? Hundreds of children taken from their parents, both adults and children sectioned and forced to exercise until they collapse? I'm with Molly, it's against our human rights. It makes me sick to the stomach knowing new patients continue to be harmed and families are being put through hell, not to mention the damage inflicted on the poor children both physically and mentally.

How can we continue to stand by and do nothing, I am so sick of doing nothing, there is too much suffering?

I wasn't saying that I was opposed to any sort of legal action, I was just pointing out that I thought problems with the way it was done last time meant it failed in its aims and, imo, caused real problems for other patients trying to challenge the problems with NICE. Any legal action like this would need to be done very carefully.

 

[Jan]

I wasn't saying that I was opposed to any sort of legal action, I was just pointing out that I thought problems with the way it was done last time meant it failed in its aims and, imo, caused real problems for other patients trying to challenge the problems with NICE. Any legal action like this would need to be done very carefully.

Point taken, sorry, very tired and emotional tonight, I just cannot bear the thought of NICE guidelines not changing after what Alem and many others went through to reveal the lies of PACE. Sometimes hearing about the suffering, especially the children, becomes too much to bear.

 

[Luther Blissett]

Anyone got any, new, creative or novel ideas?

Yes, my idea is that we (as patients or carers) sign a declaration publicly denying consent to be treated by the NICE guidelines. (i.e against The pace version of CBT and GET)

It would have to be well worded, explaining why and an emphasis on we are not against it because of 'stigma' but because it does not work and the risks are too great.

It could have a couple of good outcomes, it could be used as evidence that 'patients' are against treatments, and individuals could use it as evidence or 'reasonableness' if they are pressured into it by authorities. It might also provide public evidence of the strength of feeling and encourage media to investigate more.

I think it would be good to have some expertise in drafting it, (especially medico legal) then posting it on change.org for all to sign.

edited for mistakes

 

[slysaint]

I think that although I know David Tullers FOI about the topic experts has been turned down that the MEA (or someone) should try again.
If they (NICE) refuse again then pursue that (ie on what grounds are they refusing, and evidence).
This is how Alem did it for the PACE data:
"On 24 March 2014, he filed a UK Freedom of Information Act (FOIA) for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC)."
ICO website: https://ico.org.uk/

Maybe one of QMULs lawyers who signed the letter demanding retraction of PACE might be able to give some advice?

eta:
https://ico.org.uk/for-organisations/guide-to-freedom-of-information/refusing-a-request/

eta2: need to be given the names and what COIs were declared if any.

 

[Valentijn]

At the very least, it's going to be extraordinarily hard to prove bias.

Not really. When turning down David Tuller's recent request for the identity of those involved in determining if the CFS guidelines should be reviewed, NICE refused on the grounds that they feared for the "well-being" of those involved. FOIA requests and online interest were cited as the foundation for their fears.

The NHS has also published at least one blatantly biased PACE review, where they interpreted lack of differences at followup to say that the supposed benefits of CBT and GET were sustained. The person writing that summary had said some rather nasty things about ME/CFS patients in the past, yet the NHS refused to fix his summary, and it sounds as if nothing was done to prevent him from continuing to act in an official capacity against the patients he holds in open contempt.

I was told by a neurologist I had emailed for info years ago that he told all his patients that a physical cause of ME would never be found! Cant recall his name unfortunately. I emailed back that I was surprised that a scientist would believe absence of proof is therefore proof of absence.

Doctors are not scientists, unless they also undertake a scientific course of study. Medical degrees are classified as "professional" degrees, just like degrees for lawyers.

 

[arewenearlythereyet]

I agree that legal action should be the last step of a very long and sustained campaign that builds the case as we go. From bitter experience I know that the legal system is stacked against individuals but I like the idea of a group funded legal action. I just think that this should be a legal professional that orchestrates the steps or at least advises. One persons deterioration of health for this cause is one too many in my opinion.

I can understand why the MEA would not want to risk their donations since this sort of cost could easily spiral into £100k plus. My worry is that this is a difficult sum to fund when the amount could be open ended as it progresses. Perhaps any crown funding could be stepped to initially fund some advice on building the case? There would need to be an action group to make decisions though. Who that should be I don't know.

 

[trishrhymes]

While I am curious to know the names of the individuals concerned in advising NICE, I think we can read between the lines pretty effectively from the outcome of their advice that they are BPS supporters. I'm not sure much would be gained by knowing exactly which ones.

I would much rather be provided with a list, not of people, but of which published papers were considered in this decision making process. They claim to look at evidence. I think we have a right to know what evidence they considered relevant.

Was it a limited range of psychological papers, and only ones carefully selected by their chums, or did they consider the PACE reanalysis and critiques, the failure of the FINE trial to show any benefit, the PACE long term follow up paper that showed no between group differences.

And did they look at any biomedical papers? If so, which ones? And do they confine themselves to research done in the UK?

I was shocked to read that they only read abstracts of papers. No wonder they the PACE people take such care to distort their findings in the abstracts if they know this will happen.

EDIT - Ignore this post. I have been rightly told I don't know what I'm talking about.

 

[slysaint]

I'm not sure much would be gained by knowing exactly which ones.

We can guess who they are; but until NICE actually name names, we cannot question COIs.

This would help to demonstrate the bias eg if Crawley was involved (highly likely) it is no wonder that she does not want the guidelines reviewed as it would potentially bring into question most of her research not least the £1million FITNET project (which NICE are citing as an example of potential upcoming research that might influence the guidelines).

Similarly with the psychs on the expert list; until we know who they are we can only speculate about COIs.

From NICE website:
"
Experts are required to fill out a form:
Conflicts of interest policy: Declarations of interests form for advisory committee members

All interests that might unduly influence an individual’s judgement and objectivity in the conduct of NICE business should be declared. If in doubt, please declare all interests.

Particular consideration should be given to interests involving payment or financial inducement or any reputational interest related to academia that may be affected by the matters under discussion. The examples in the policy provide guidance as to the type of interest that needs to be declared.

I declare that I have read and understood the NICE Conflicts of Interest Policy and that I wish the following interests to be recorded, in accordance with the relevant provisions of the policy. I am aware that failure to declare relevant interests may result in an advisory committee member being required to stand down.
The time period for relevant interests is 12 months before joining an advisory committee and for the duration of membership of the committee."

https://www.nice.org.uk/media/defau...tment-pack/Declaration-of-interests-form.docx

see also:
https://www.nice.org.uk/about/nice-...lvement/patient-and-public-involvement-policy

 

[Stewart]

I would much rather be provided with a list, not of people, but of which published papers were considered in this decision making process. They claim to look at evidence. I think we have a right to know what evidence they considered relevant.

Here you go - pages 48-56.

 

[Stewart]

We can guess who they are; but until NICE actually name names, we cannot question COIs.

Actually we can. As I've suggested a couple of times (and as I'm about to suggest again - sorry to be a bore) we could get a helpful Parliamentarian to table a written question asking NICE for a breakdown by specialisation (ie. the two neurologists, three psychiatrists, one paediatrician and the one patient representative) of the conflicts of interest declared by the members of the expert group, in particular any personal non-financial interests relating to the effectiveness of CBT or GET as interventions.

That information would allow us to raise concerns about CoIs without NICE having to identify any of the members of the expert group.

 

[slysaint]

conflicts of interest declared by the members of the expert group

but what if they didn't make full disclosure? we would be none the wiser.

 

[Deepwater]

Perhaps it needs trying again, I don't know, all I do know is that this will not change until its forced to, for how many years have they blatantly ignored the suffering and harm and the evidence, and they will continue to do so until they fear being held to account, which at present they clearly don't. It is very clear that all the stakeholders shit is just PR, they have no intention to listen to patients or patient organizations. It does not matter how loud we shout as long as they feel they can get away with what they do without accountability or ramifications they will continue to do what they have always done.

If we try it again we would need the BIGGEST legal and scientific brains and experts on our side, to counter the enormous egos and piles of BS on the other.
Would it even be worth approaching a really top human rights lawyer to see if they would do it pro bono given the huge injustice involved and the powerlessness of those being abused?

 

[trishrhymes]

We can guess who they are; but until NICE actually name names, we cannot question COIs.

Good point. I obviously hadn't thought that through properly.

Edit to add. Thanks @Stewart, I clearly haven't followed this discussion closely enough to know what I'm talking about. I shall retire from this thread!!!

 

[charles shepherd]

I have replied to NICE today as follows:

Dear xxxxx

Thank you for your reply which explains the background as to how and why the group consisting of topic experts and previous guideline development members was put together, along with the role of the NICE surveillance team.

We do, however, remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS.

I would be grafeful if you could answer three questions that follow on from your reply:

Firstly, as you will be aware, over 15,000 people have signed the MEA petition calling for an update/review of the NICE guideline on ME/CFS. The Forward ME Group of Charities, chaired by the Countess of Mar (copied in), has also called for a review of the guideline.

Am I therefore correct in concluding that the patient representative on the topic expert group, who presumably agreed with the recommendation to not update the guideline, was not a representative of one of the national ME/CFS charities, and was not put forward by one of these charities.

Secondly, we are surprised and concerned to see that the topic expert group consists of three psychiatrists, only two neurologists and no physicians from any other key clinical areas that ME/CFS involves - infection and immunology in particular.

ME (and CFS) is classified by the World Health Organisation in ICD10 as a disease of the central nervous system - a classification that is accepted by the Dept of Health. ME/CFS is not a psychiatric illness.

Why, then, did NICE decide that they required more psychiatrists than physicians and no other clinicians apart from two neurologists?

Thirdly, you state that there is exemption from disclosure of names under two sections of the Freedom of Information Act. Please could you state which sections these are.

If you are unable to answer these questions please could you refer them to someone who can.

Finally, I have not been able to find out who NICE is actually accountable to following the decision to change its status as a Special Health Authority that was previously accountable to the permanent secretary at the Department of Health.

Please could you therefore clarify who NICE is now accountable to at the Department of Health in its role as a non departmental public body.

Yours sincerely

Dr Charles Shepherd


Hon Medical Adviser, MEA

 

[Molly98]

If we try it again we would need the BIGGEST legal and scientific brains and experts on our side, to counter the enormous egos and piles of BS on the other.
Would it even be worth approaching a really top human rights lawyer to see if they would do it pro bono given the huge injustice involved and the powerlessness of those being abused?

Too brain fogged to read or write much, but we could crowd fund to at least seek legal advise from a good human rights lawyer and then see what options are.

Without seeking such professional legal advice I fear we are continually going round in circles. I do have a close family member who would have the connections in the field of international human rights law to find a good lawyer but we would have to see if there was the will and financial support of the community to back such a thing and take things one step at a time, this first being legal advice from someone who knows their stuff.

 

[Sbag]

I wasn't saying that I was opposed to any sort of legal action, I was just pointing out that I thought problems with the way it was done last time meant it failed in its aims and, imo, caused real problems for other patients trying to challenge the problems with NICE. Any legal action like this would need to be done very carefully.

It looks like there was a Parliamentary Bill in 1988 which required an annual report to be presented to the House of Parliament each year by the Secretary of State - not sure if this is still relevant or not?
There is a lot of information here http://www.investinme.org/Article-704 UK-Government Position on ME.htm on the questions that have been raised in Parliament and the responses confirming it as a neurological condition.
The response I had back on the terminology that insurers use was that the FCA do have an unfair contracts team, who do have power to challenge unfair terms, for example if it excludes or limits your legal rights unfairly. I can report it to them or I could raise the issue with my local Member of Parliament if I feel that legislation change is required.

So maybe the best way to tackle this without getting expensive lawyers involved is to address the ongoing disregard for the terminology and classification and how peoples rights are being abused by insurance companies who continually place ME in the mental health category - this might unite the different arguments and threads and bring them into one complaint raised with parliament and local MPs.

 

[sarah darwins]

I have replied to NICE today as follows:

I think that's an excellent letter, Charles. And it's going to be very interesting to see how they respond to the bit about the decision to include more psychiatrists than physicians in the evaluation of treatment for what the Department of Health accepts is not a mental illness. That's going to take some explaining. Keep up the good work.

 

[Stewart]

but what if they didn't make full disclosure? we would be none the wiser.

That's very true. But given what we (and they) know about NICE's self-imposed omertà around the membership of expert groups - and given that declaring a personal non-financial interest was not a bar to continued participation in the group's deliberations on the specific issue under consideration - they had no reason to not make a full disclosure.

At the very least, getting a partial list of CoIs on CBT and GET would provide us with a useful tool to go on pushing for the names to be released...

 

[Stewart]

Am I therefore correct in concluding that the patient representative on the topic expert group, who presumably agreed with the recommendation to not update the guideline, was not a representative of one of the national ME/CFS charities, and was not put forward by one of these charities.

Charles,

Just out of interest - is the MEA in contact with the two remaining patient representatives who served on the guideline development committee? I would have thought they are the most likely candidates to be the patient representative in the expert group (and as far as I know they're both involved with local ME/CFS groups rather than national ones).

 

[charles shepherd]

Charles,

Just out of interest - is the MEA in contact with the two remaining patient representatives who served on the guideline development committee? I would have thought they are the most likely candidates to be the patient representative in the expert group (and as far as I know they're both involved with local ME/CFS groups rather than national ones).

I am still in regular contact with Christine Harrison (BRAME) - who is Tanya Harrison's mum. BRAME are part of the Forward ME Group - so they are also part of the FMG submission asking for an update/review of the NICE guideline.

I no longer have any contact with the other patient representative.

If my recall is correct there were only two patient reps.

CS