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

[Aurator]

I'm not sure how many people have heard of C.S. Lewis' dystopian novel The Hideous Strength.

According to a well-known online encyclopledia "the story involves an ostensibly scientific institute, the N.I.C.E., which is a front for sinister supernatural forces... The National Institute of Coordinated Experiments (N.I.C.E.) is a scientific and social planning agency, furtively pursuing its program of the exploitation of nature and the annihilation of humanity. The Institute is secretly inspired and directed by fallen eldila, whom they refer to as "Macrobes", superior beings. Their takeover ...shows the manner in which they use human pride and greed to get what they want. After N.I.C.E. achieves its ends, the earth will only belong to the "Macrobes".

 

[Jenny TipsforME]

wouldn't assume UK neurology is good.

I meant it's a reasonable choice. ME is classified as neurological so you'd expect majority of "experts" consulted to be neurologists. It would also be relevant to include immunologists etc but not psychiatrists.

If the psychiatrists were replaced by neurologists you would still have some bias, but NICE could be said to have acted reasonably. If the experts aren't relevant to the condition, any bias can be placed at NICE's door, rather than dismissed as scientific debate.
So perhaps failing the

Negligence
Around
Selecting
Trustworthy experts
Yardstick

 

[Jenny TipsforME]

the story involves an ostensibly scientific institute, the N.I.C.E.

Spooky

 

[Jenny TipsforME]

NICE essentially said to Tuller that if patients exercise their democratic rights to express their opinions and ask for information NICE will deem them dangerous and therefore not give the information.

If we show an interest we can't have the information. But it is impossible to get the information without showing an interest either by discussing online or putting in FOI requests. Therefore, it is not possible for pwme to know this (or quite a lot of other) information.

 

[Molly98]

I think we should crowd fund for legal advice, get a lawyer to warn NICE of knowingly and willingly ignoring true ME experts and ignoring scientific evidence to the detriment and harm of patients. Get lawyer on the case and people sit up and take notice, organisation's wont take notice without one, they frankly don't give a shit about the harms to patients, they will give a shit about bringing a whole load of legal trouble for the organisation. Would also get in the media, patients take legal action against NICE.

 

[RogerBlack]

I think we should crowd fund for legal advice, get a lawyer to warn NICE of knowingly and willingly ignoring true ME experts and ignoring scientific evidence to the detriment and harm of patients. Get lawyer on the case and people sit up and take notice, organisation's wont take notice without one, they frankly don't give a shit about the harms to patients, they will give a shit about bringing a whole load of legal trouble for the organisation. Would also get in the media, patients take legal action against NICE.

This would be 'Judicial Review'. This did not go so well last time.
http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html

Quoting from part of the conclusion.

Conclusion

1. Having ascertained the circumstances which are relied on in the support of the claim of bias I can state my conclusion on the predetermination issue as follows.
   
   
   i) The general allegation that there was insufficient 'representation of the bio-medical approach' is misconceived.
   ii) The nearest the Claimants came to making good the contention that the 4 members of the GDG were apparently biased was reliance on a number of selective quotations. Closer investigation demonstrated that in some cases the quotations were deployed unfairly and in others cases had to be read in their proper context. In any event, prior observations favouring a particular treatment would not be sufficient grounds for excluding a member of the GDG from participation. There was no direct evidence, or evidence from which an inference could properly be drawn, of predisposition in the sense of any member of the GDG having a mind which was closed to the evidence; rather the contrary.
   
   iii) Many members of the GDG had long standing interests in CFS/ME. That is why they volunteered; and that is why, in some cases, they had published Research Papers on the subject. This did not preclude them from being appointed; nor did it require them to stand aside at the final stages of the preparation of the Guideline. Professor Baker's description of his approach as Chair of the GDG is instructive,
   
   Firstly, given the controversy that surrounds the condition of CFS/ME we decided that it would be best to have three patient representatives rather than the usual two. Secondly, we wanted the GDG members to be those with day to day experience in treating CFS/ME, rather than, for example, those whose primary interests were research into the condition, or putting forward theories on aetiology. We also wanted the professions/specialisms regularly concerned with the treatment of CFS/ME to be represented on the group. Thirdly (and connected to the second point) while we did not ask nominees about their views on the causes of the condition, we were anxious to avoid having as a GDG member anyone whose involvement in the CFS/ME community to date (e.g. through papers they had written advancing a particular theory on the condition) made it likely that they would want to 'push' one theory of CFS/ME rather than another. This approach was entirely appropriate.

A further judicial review is not impossible, and in principle might come to a different conclusion, but if you read closely the judgement there are many hurdles to be overcome. Especially as any judge is going to look at the prior judgement to see if it has merit.

 

[Molly98]

This would be 'Judicial Review'. This did not go so well last time.
http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html

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.

 

[Valentijn]

If we show an interest we can't have the information. But it is impossible to get the information without showing an interest either by discussing online or putting in FOI requests. Therefore, it is not possible for pwme to know this (or quite a lot of other) information.

So we say "screw NICE" and appeal the denial to the ICO. They know that the bigoted slurs repeated by NICE are false.

 

[RogerBlack]

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

I have not closely read the judgement. On skimming, at least some of the criticisms of NICE are held to be outside the scope of possible legal actions through this route, and would need to be challenges against the bodies setting the scope for NICE.

This may be even more problematic, as as I understand it at this point, all 'CFS' related stuff would drop out, and it would be just a general appraisal.

At the very least, it's going to be extraordinarily hard to prove bias. And if (as my skimming indicated) NICE impact on budgets is not 'in scope' for Judicial review, that is a major weakening of the possible criticisms.

 

[Vonjones]

I have always understood that neurologists are the greatest atheists of all the specialities when confronted with a case of ME. As stated by a doctor in our county hospital: 'I don't believe in ME', ......as though it is some article of faith...................and neurologists are particularly fervent unbelievers.

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.

 

[slysaint]

also discussed here:
http://forums.phoenixrising.me/inde...nd-the-meas-petition.53349/page-2#post-886621

 

[Snowdrop]

I think we should crowd fund for legal advice, get a lawyer to warn NICE of knowingly and willingly ignoring true ME experts and ignoring scientific evidence to the detriment and harm of patients. Get lawyer on the case and people sit up and take notice, organisation's wont take notice without one, they frankly don't give a shit about the harms to patients, they will give a shit about bringing a whole load of legal trouble for the organisation. Would also get in the media, patients take legal action against NICE.

The issue of winning or not may not even be the point (since it could be impossible) but I think I agree lawyers are really the only thing people like this fear-- and that kind of awful media exposure (although that could backfire --in the short term--depending on how much support they have left for spin). And it's a matter of timing --a lawyer even a year ago would have been a waste but things are changing.

 

[Molly98]

The issue of winning or not may not even be the point (since it could be impossible) but I think I agree lawyers are really the only thing people like this fear-- and that kind of awful media exposure (although that could backfire --in the short term--depending on how much support they have left for spin). And it's a matter of timing --a lawyer even a year ago would have been a waste but things are changing.

Yes and having a lawyer watching everything you do, every decision made is very different from having patients and patient organizations do this. Fear is a bigger motivation for change for some than doing the right thing morally. Personally the sooner this happened the better because it may have more influence on NICE decision to upgrade guidelines or not than any amount of pleas or evidence coming from us. My opinion is patients organizations are not enough in this case we need legal representation. They are certainly not taking a blind bit of notice of us so far.

 

[charles shepherd]

Several people are suggesting that the MEA (or the ME/CFS charity sector) should initiate a judicial revue if NICE decide that they are not going to update or review the NICE guideline on ME/CFS

Remembering that the last judicial review of the NICE guideline on ME/CFS failed:
http://www.meassociation.org.uk/2009/03/nice-statement-on-the-outcome-of-the-judicial-review/

And that judicial reviews do not come cheap when it comes to legal costs and fees, who is going to fund a judicial revue?

MEA trustees have a duty of care to spend the charity's money in a responsible manner and I do not think that the possibility of losing tens of thousands of pounds of charity donations would be regarded as behaving in a responsible manner

What is a judicial revue?
http://www.richardbuxton.co.uk/the-law/judicial-review-process

MEA statement on request for help with legal costs relating to the previous (failed) judicial review:

Financing a judicial review of the NICE guideline on ME/CFS

The ME Association recently received an email from the One Click Group asking for a contribution towards the costs of bringing a legal action for judicial review of the NICE Guideline on CFS/ME. The Association has been asked by members for its view on whether such a contribution should be made.

The Board of Trustees believe that each individual must make their own judgement as to the merits of donating to the One Click action but it has decided not to make any contribution from the charity’s funds.

There are, at the moment, too many unknowns about the the chances of success or otherwise of such a case.

The opinion of Counsel has not been disclosed and the judicial review expertise of instructing solicitor nor the barrister used is unknown.

Launching a court action may well cost at least £20,000 but if fought the costs may be many times more than the amount requested.

In addition, there is no indication whether a conditional fee agreement is in place and there is no guarantee that the court action will not be abandoned for lack of money.

Even if successfully fought who knows what alternative to the existing Guideline will be brought into place.

There are other avenues open to seeking change to the NICE Guideline in respect of the failings that the ME Association identified in its Statement on the Guideline.

Monitoring the practical application of the Guideline is crucial.

It will be in the delivery of care to people with ME/CFS in the light of the Guideline advice that will guide our actions.

In addition we shall continue to exert pressure for the failings of the Guideline to be amended and, to this end, we urge everyone to write to their Members of Parliament, using either the pro-forma letter which was sent with the October Edition of ME Essential or by using a copy of that letter which is available for downloading from the ME Association’s website.

The Board of Trustees has a duty of care in respect of the charity’s funds. We are ultimately responsible for everything the charity does and how it does it. We must make sure that the charity’s assets are used exclusively to pursue the charitable purposes which are set out in its governing documents, namely:

• to offer relief to persons of all ages with ME/CFS through the provision of information
• to further education in all aspects of the illness
• to support research and to publish the useful results of such research

The Trustees believe that the best use of the charity’s funds lies in pursuing these aims rather than contributing towards a legal action where both success and outcome are problematic and over which donors to the fund have no control.

Neil Riley
Chairman of The ME Association


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Molly98]

I am not someone very familiar with legal stuff, but in my mind I was thinking of human rights law, the right to health, the right to be treated with dignity and respect, the right not to be discriminated against, I think as ME patients we are, and I can not see why a good human rights lawyer could not build a strong case around this.

I mean NICE reasons not to release the names of so called experts because of them being at risk from militant ME patients shows the prejudice they have for us. But we see it all the time, all of us, we are generally held with such contempt, disbelief, neglect and redicule. Denied tests that others with exact same symptoms would be given, pushed into treatments we do not want and there is no evidence for which others with similarly chronic and serious diseases are not subjected to. There is a deliberate attempt to disseminate information and prejudice all staff within the NHS into believing an organic illness for which there is much scientific evidence is faulty beliefs and emotional and psychological, a deliberate undermining of the welfare, dignity and health needs of patients

I also was not thinking of the MEA or charities but individual patients crowd funded by the community or a collective of patients.

Just a thought, Amnesty international can not campaign on human rights issues in one's own country, but would it not be possible to bring the human rights abuses of ME patients in the UK, particularly children and the severely affected to the attention of Amnesty in US, Canada, NZ or Australia and see if they would get a campaign going against what is happening in the UK, patients are being harmed and left disabled by treatments 15000 people have signed to say they are harming them . how can this be anything other than cruel, degrading, abusive and neglectful.

 

[Esther12]

I read some of the stuff submitted for the last judicial review, and it included some poor quality work and misleading claims that were rightfully picked apart by NICE. That was a great example of the importance of patients challenging medical authority making sure they've got all their facts right. If people go too far, misinterpret the evidence, or make a poorly reasoned argument, then they can do real harm to the way that the concerns of other patients are treated.

 

[Molly98]

While judicial review may have failed last time so to did all the charities and patients usual campaigning trying to influence NICE, in fact they did not make a scrap of difference. If we want the outcome to be different we have to do something different not just the same old same old, it will lead to the same old results.

Anyone got any, new, creative or novel ideas?

Let's not forget also our biggest victory and step forward was patients taking on a big institution In court to get the PACE data released, so it can work in our favor sometimes.

 

[Jan]

If people go too far, misinterpret the evidence, or make a poorly reasoned argument, then they can do real harm to the way that the concerns of other patients are treated.

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?

 

[Jan]

And remember, it's going to get worse anyway once we are all just MUS and muppets.

 

[Seven7]

Do you imagine the headline of a great article:

PACE hold data While real researchers in US openly Share it.

One can dream.