Reply from Nice

[Sunshine3]

Appointees will not be changed...so surprising! I sent my email using ME Action tool so assume a generic reply going to all. They can ignore us with no consequences whatsoever.

Email below

Thank you for your recent email to the National Institute for Health and Care Excellence (NICE), in which you express concern about the membership of our ME/CFS guideline committee.



It is important that our guideline committees have the experience and expertise to consider the published evidence and to take account of the views of people who receive and who provide care for this condition. Our arrangements for appointing the chair, vice chair and the members of guideline committees are designed to ensure that the opportunity to take part is advertised and that appointments are made on merit.



We are very aware that the causes of ME/CFS and the treatments that should be made available are the subject of debate and many people living with the condition hold strong views on both questions. Because of this, we have worked carefully to ensure that the membership of the committee contains a balance of those who have expressed clear views, together with members who have not so far taken a position on the currently available evidence.



Because of the concerns you and others have expressed, we have reviewed the appointments made so far and we consider that they are appropriate and that the interests the members have declared can be managed using our conflicts of interest policy. We will ensure that the small number of final appointments yet to be made retain the balance referred to earlier.



I hope that you will allow the guideline committee to begin its work and judge it not on the basis of your views of those who sit on it, but by how it interprets the evidence and the way in which it takes account of your perspectives and experience, when you have the opportunity to comment on the draft recommendations.

 

[Inara]

Yes, I received that email a moment ago, too.

The message is clear:

we have reviewed the appointments made so far and we consider that they are appropriate and that the interests the members have declared can be managed using our conflicts of interest policy

So I think that any letter that is sent will bring no change.

Therefore, I personally think it is important to show publicly that we do not agree to some of the appointees. Publicity is important.

 

[Joel]

I hope that you will allow the guideline committee to begin its work and judge it not on the basis of your views of those who sit on it, but by how it interprets the evidence and the way in which it takes account of your perspectives and experience, when you have the opportunity to comment on the draft recommendations.

Spoiler: click to see animated gif

Interesting to read in the last sentence though that what comes out of the committee are recommendations, which we will get to comment on, before it is finalised. To what degree that is so I don't know, but of course NICE rejected the experts who recommended leaving the existing guideline as it was so this may be somewhat encouraging.

 

[ME/CFS Skeptic]

Interesting to read in the last sentence though that what comes out of the committee are recommendations, which we will get to comment on, before it is finalised. To what degree that is so I don't know

Yes: the committee discusses evidence reviews and expert testimony and develops draft recommendations. But then there’s a consultation where stakeholders can comment on the draft guideline. The committee is expected to revise the guideline in response to those comments.

I’m no good at uploading graphs, but you can see a useful timeline overview in the NICE guideline manual on page 23

 

[Forestvon]

I wrote separately from the template but got the same reply.

 

[Binkie4]

Copied across from other thread. ETA: Nice: co-signees Burton letter

We sent an individual letter by post on 1st November. No reply received so far.

Like @Michiel Tack we hope the individual points made will receive full attention but are not not holding our breath either......

 

[Tia]

I received the same email. I also used the MEAction template although I did customised the letter a bit.

It makes me wonder whether us sending multiple copies of the same letter is helpful or not as a campaign strategy - is it better that they receive a few well written letters from individuals (such as the one that was shared here by someone whose name I can't remember - sorry) rather than receiving multiple copies of a template letter? I don't know the answer, just wondering if that makes it easier for them to dismiss?

I guess the problem is that it takes so much energy to put together a letter...

 

[Binkie4]

I received the same email. I also used the MEAction template although I did customised the letter a bit.

It makes me wonder whether us sending multiple copies of the same letter is helpful or not as a campaign strategy - is it better that they receive a few well written letters from individuals (such as the one that was shared here by someone whose name I can't remember - sorry) rather than receiving multiple copies of a template letter? I don't know the answer, just wondering if that makes it easier for them to dismiss?

I guess the problem is that it takes so much energy to put together a letter...

I have read somewhere something to the effect “template question.......template reply.”

But yes, it takes much energy to do an individual letter and my carer/DH does ours. Would not be possible for me to do it. It takes a lot from him too but we copy in our MP and have sometimes seemed to get somewhere. This time seems unlikely ( there is just too much hanging on their decision for Nice to move position I think) but hopefully their reply has to address the issues.

 

[Sunshine3]

Gosh I sense optimism here... I'm not feeling it myself and I agree the template letter may not be the best but we have no other options as I for one, am like a zombie with energy of a dead cat

 

[Binkie4]

Not feeling very hopeful @Sunshine3 especially since I am having a really bad day ( much worse than usual) and have to go for heart tests at the Brompton tomorrow.
Just feel we should push them to answer our questions but I am not fit to do it for the time being.

 

[Cinders66]

I think the issue is NICE are starting from the historical U.K. establishment position where CFS is viewed as a broad umbrella, unknown and controversial, grey area , mind body thing with opposing “views” on it. This isn’t where I would start off. I note they refer to it as a “condition”, I never call my illness a “condition “ who does here ?

Their obvious attempt to set up a semblance of “balance” is either to reflect the above and for the guide to then be formulated, no doubt as some mish mash of both positions and presented as having consulted a wide range of opinion to be fair etc etc or it’s the establishment wanting to essentially keep continuity /status quo but conceeding a bit to the patient/biomedical approach either because they want to genuinely reflect that or to buy us off with the minimum.

I don’t know if expecting more than balance for now from NICE is unreasonable and they did change course it seems in response to pressure so I think the community should be applauded for that.
Can we expect NICE to break free and do anything other than this type of old new for against thing to move forward ?

The problem is I think the views of the BPS are outright wrong so I’m uneasy at them having influence on the way forward for ME as I would be a climate change skeptic like trump sitting on a panel deciding the plan to safeguard the environment. Is a CBT promoter capable of assessing the evidence already in the domain in any other way than to the expected ? Or is it being set up like a court with for and against arguing as predicted to ultimately be decided by the neutrals ?

But beyond writing letters at this stage there’s nothing to do further unless #MEAction respond.

 

[Lucibee]

 

[rvallee]

Therefore, I personally think it is important to show publicly that we do not agree to some of the appointees. Publicity is important.

That is our only asset. We have no influence on the process. We can only make our objections on the facts known and as transparent as possible. It will largely be ignored during the process, but will be significant later on when accountability can't be deflected anymore. That the process is corrupt and incompetent is already clear.

NICE have to understand the threat that eventually hard questions will be asked about who knew what when and how the hell did such a disastrous display of contempt for the sick happen despite overwhelming objections from patients and competent researchers and in contradiction with research.

 

[Wonko]

I expect nothing from these people, but still they constantly disappoint, and I seem doomed to continue to be so.

 

[rvallee]

My hostile response. I expected nothing and so am not disappointed, but I want the facts to be on record.


As you are aware, the review process under way is happening because patients overwhelmingly consider the guidelines to be unfit for purpose and wholly detached from reality. This has nothing to do with opinion. It is a dispute over basic facts, which the current guidelines wholly reject in favor of ideology, politics and fraudulent research of exceedingly low quality. In the US, AHRQ has downgraded the research NICE relies on and both NIH and CDC have stated that the psychosomatic ideology that NICE promotes is completely at odds with reality. Ignoring this is not good science and even worse medicine.

Over the years, tens of thousands of warnings have been voiced about the harm and general uselessness of the ideological psychosocial model. This is exceptional and it does not happen without good reasons. It will not be possible to defend the corruption and incompetence on display as an honest mistake. It will not be possible to argue NICE and the NHS were not aware of the harm and significant issues with the fraudulent research used to justify this Dickensian approach to health care.

As anyone familiar with the 2007 guidelines will know, they were initially implemented without any evidence whatsoever, as a tiny handful of unblinded trials with self-reported outcomes simply do not amount to relevant scientific evidence. One part of the subjective "evidence" used includes the Cochrane review, which was self-reviewed by PACE researchers and like-minded colleagues. This is evidently broken and corrupt and has no place in science, especially not in medicine. The guidelines were implemented based on ideology and political promises that have now left NICE in a bind, as acknowledging that the guidelines are disastrous will lead to significant liabilities, and rightfully so. Many patients have testified to having been made severely disabled long-term from those guidelines. It is already public record and suspension of disbelief will not hold forever.

Research in ME may be underfunded, but it will soon enough produce breakthroughs. This is inevitable. It is how it has always worked in the past. Underfunding is precisely the reason why so little progress has been made and the ideological psychosocial model, detached from reality and harmful to millions, has played a major role in sabotaging progress. It is all properly recorded and laying blame for what happened will be easy.

For historical reasons that are now clearly no longer deserved, UK science and medicine have an outsized influence in the world. Because of this, millions of lives are being deliberately and knowingly put at grave risk. It is not just a national disaster, it is an international catastrophe. Be assured that in the future, there will be serious legal consequences from all over the world for the incompetence and cruelty that has turned UK medicine into a mess of magical thinking and political ideology.

Fortunately, we patients take great care to publicly record the process and will continue to do so. It is painfully evident that the current process is incompetent and aims only to protect careers and deflect accountability for past mistakes, knowingly causing immense suffering for millions and numerous early deaths. I don't know what leads someone to pursue a career in medicine while holding such contempt for the sick, but this hostility is painfully obvious and will have serious legal consequences.

The world is watching. You are failing spectacularly.

 

[Suffolkres]

Look what Tilly just found.....http://www.niceconference.org.uk/agenda?fbclid=IwAR3Pc-oUDB_AaQm8QogeTA9pIuZDR5TwOtJrBzd6WCaWyKujEfwL8_7mJlI

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Audience Profile

 

[It's M.E. Linda]

@rvallee

Are you on Twitter?

ETA many hand clapping emojis (which may, or may not appear, second time!)

 

[Sunshine3]

I expect nothing from these people, but still they constantly disappoint, and I seem doomed to continue to be so.

Oh Wonko, I want to hug you!

 

[large donner]

Because of the concerns you and others have expressed, we have reviewed the appointments made so far and we consider that they are appropriate and that the interests the members have declared can be managed using our conflicts of interest policy.

Only the interests they have declared?

Just saying, "we consider we can manage the interests", does not declare exactly how they will do so. This needs to be laid out transparently with the full mechanics documented before the process.

They have just declared they can do that so lets see them tell us how they are going to.

Where in this statement is there assurance that certain people will be excluded on voting on certain implementations for example, if their whole careers have been staked on certain claims of efficacy for treatments or causation?

This is especially crucial if the evidence presented is clear and concise against the current treatments during the process.

Let's say the chair can clearly see there is no efficacy from CBT and GET and even produces harm, yet at the end of the process the vote goes in favour of them both.

Lets say the whole stadium, the commentators, the VAR, the referee and the away team can see the ball went over the goal line, except eight BPS proponents to seven others on the panel.

Lets say its only a goal if we get both teams owners to vote on it and one team has eight votes and the other has seven.

Then what?

 

[JemPD]

They have just declared they can do that so lets see them tell us how they are going to.

indeed

@rvallee