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

That seems to have happened in The Netherlands with the Gezondheidsraad committee. There was a lot of outrage at the BPS-heavy selection of committee members (most notably dr. Knoop, who made the "strict criterion of recovery" comment on PACE ). But also patient representatives, who managed to stand their ground. Dr. Knoop ended up quitting just before the final revision. The resulting advice/recommendations adopted IOM conclusions and underlined the issues with benefits and disability service assessments.

Recently the Dutch health minister responded to these conclusions thread here. Took quite a while (the Gezondheidsraad Report is from 19 march 2018) but with the government adopting these recommendations we're making some headway.

I should add that this is not replacing guidelines as of yet, but the Dutch association for GPs removed them from their website in october. Babysteps..

 

Very true. Someone made the point - I think on the Cochrane IPD thread - that small shifts in the right direction are more robust than big 180 degree course corrections. The small changes represent new ground that can be held, while a big swing can be thrown out as someone having lost their mind. So yay for babysteps

 

Progress is progress!

 

It has taken me a while to write this so apologies. @Michiel Tack
Mr Binkie has received a further answer from Nice re our concerns about the composition of the GDG.

He wrote a letter, sent by post, to Nice early in Nov expressing our concerns, an individual not template letter. He received the template response, which was also received by S4ME.


This was not acceptable so he wrote a further letter, by email, copying in our MP and writing to him separately re the issue, and received the following response from Nice two days ago last Thursday, 17th Jan. We know from correspondence that our MP wrote to Nice.


Response from Nice:

Dear Mr ........


“ I am sorry that you are unhappy with my response to your letter of 1 November 2018 and for the delay in sending this response.


Due to the volume of correspondence we received we weren’t able to respond to each email or letter individually. This being the case, we developed a response that addressed the main issues raised, by you and others, and this is what I attached to my last email to you. This information is also available as a statement on our website.


You make further comment in your email of 26 November 2018 on the balance of the committee. Our statement addresses this issue. The full membership of the committee has not yet been confirmed and the full list and their declarations of interest will be published on the guideline development page of the website in due course.


Your letter concludes with 3 questions:

1. Why were the medical advisors to the ME/CFS charities and other eminently qualified enthusiasts for change rejected whilst a majority of members accepted are enthusiast for the status quo?

It is not appropriate for NICE to comment on any individual’s appointment or otherwise to a committee. In recruiting and appointing the committee we have followed our standard recruitment process which includes careful scrutiny of applicants’ interests and their ability to consider the evidence on its merits.


2. Please explain how anyone with any knowledge of the scientific advances in the field of ME/CFS could possibly be expected to take this review seriously in view of the committee announced?

As a result of concerns raised with the appointments made so far we have reviewed the appointments and we consider that they are appropriate and that any interests that the committee members have declared can be managed using our policy on declaring and managing interests for NICE advisory committees.


3. Please will you advise what steps you will be taking to rectify this situation and meet your commitment to ‘ensure a balanced and diverse committee’?

The proposed committee membership includes people with a range of views, and is balanced between those with differing views. We will ensure that this balance is maintained as far as is possible in the final appointments yet to be made.


In your email you ask the following new question:

Please will you explain why, if you are still seeking to recruit a nurse with experience of ME/CFS, Nurse Caroline Kingdon of the London School of Hygiene and Tropical Medicine was deemed an unsuitable candidate?

It isn’t appropriate for NICE to comment on the suitability or unsuitability of an individual to be part of a committee. Recruitment is done by open application and in line with our standard process for recruitment to committees. As I say above, the full membership of the committee will be published on our website in due course.


NICE is working with the committee and developers to ensure the committee hears the views of the most severely affected people and children and young people. For this reason, Baroness Ilora Finlay has been asked to act as vice-chair with special responsibility for stakeholder interests.


I appreciate you may remain unhappy with my response, however we have explained the steps taken to address the concerns raised and we hope you will allow the committee to begin its work.


Kind regards


Helen





Helen Finn

Communications Manager (Enquiries)

National Institute for Health and Care Excellence

Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom

Tel: 44 (0)300 323 0141 Fax: 44 (0)300 323 0149

Web: http://nice.org.uk”




We are glad finally to receive a response but not reassured. Please note that the questions asked were sent on 1st Nov and there were additional more suitable appointments made after that date. We also note that some of the response is a repetition of the letter posted by Andy #705.

There are points of concern in this letter - eg point 2, what is the COI point about- do Nice only look at DECLARED COI? What about conflicts that are undeclared? In that case it IS up to the ME community to alert Nice about the interests of specific people, but I doubt they would change an appointment once announced, so this is problematic.
We have run out of steam for the time being however.

The amount of time and energy it takes to get a response to justifiable concerns is huge, and energy is just what we pwme don’t have. Additionally, as I become sicker, Mr B is more involved in my care and has less time for advocacy.

The letter did say, also point 2, “ As a result of concerns raised with the appointments so far...” which suggests, if taken at face value, that they are listening which is hopeful. Some very good appointments were made later after the initial tranche, as well of course as the informed ones in the initial announcement.

The selection of the final 3 members will be crucial.

I don’t know if anyone else has received a non template response. I know other member/s did write. I don’t know how the Committee stands at the moment in terms of interests, advisors, voting members but hope this week’s debate helps us.

I am unlikely to be here again today. Heart appointment at the Brompton tomorrow.

 

Shorter NICE: shut up and take it.

Alternatively: don't ask me, I just work here. Also don't ask anyone else, no one cares.

But this justification of the committee not being complete meaning it cannot be questioned is straight up bizarre. It doesn't matter if a jury is not fully formed when it has 3 of the accused's friends sitting on it. This is the kind of fake balance that destroys a fair process. Especially considering that the review is happening precisely because the last one has been challenged as being unfit for purpose, biased and harmful.

 

It was a great letter to NICE and made very good points @Binkie4 Please thank Mr Binkie from me

They are leaving it very late to conform all the members and this seems to suggest it is still ongoing

"The full membership of the committee has not yet been confirmed and the full list and their declarations of interest will be published on the guideline development page of the website in due course."

 

Why was the list of selected members released in dribs and drabs? How does this benefit them?

Edit: to make sense

 

Thanks for posting this @Binkie4

The letter I've sent by mail and email regarding Chris Burton has not yet received a response except for the template that was given to everyone. So I guess involving your MP was a smart move that made a difference here. Thanks very much for doing this. The response from NICE is not very revealing but at least they have taken a look at the information you've provided them, which is important.

I find it a bit strange that the final committee members have not been announced. Maybe that is a good sign, reflecting that they are choosing their members more carefully than before?

 

To be able to say "we're not finished" when legitimate complaints are raised about putting saboteurs on the committee.

Then it will be "well, selection is complete, nothing we can do".

At least it's not strictly saboteurs, but they understand that we understand what they are doing and have adapted to it.

 

I think sometimes we're inclined to see conspiracy against us when that's not (all?) that's going on. There are other likely reasons why recruitment would be piecemeal.

 

Could you elaborate @Skycloud? I am genuinely confused by the piecemeal way the group is being announced.

 

My interpretation is just that they did not get enough applicants who fulfilled their criteria at first and were not expecting to have to re-advertise. In the meantime they thought they might as well publish those appointed. Subsequently the criteria seem to have been interpreted more liberally and some of those originally refused (quite a few) are now involved. If anything I see it as an indication that the bureaucratic system has given way to some common sense from the chairman.

 

Thank you @Jonathan Edwards. More or less what I've just been trying to write, which I've now scrapped. but I didn't know about the chairman, but it generally it looks that way to me.

 

It's rarely conspiracy. It's just people defending an opinion who just happen to have been completely wrong for decades about a matter of life and death. It happens all the time. No one manufactured the AIDS crisis, it happened because majority opinion, including in the medical profession, was to do nothing because they didn't think it could affect them, "only" druggies and gays.

The tobacco industry published fake research for years to hide the lethality of their product. We vaporized a potent neurotoxin in the atmosphere for decades. People tried to push thalidomide for years after it was shown to be dangerous. Tainted drugs are regularly sold in poor countries by people who know they are killing people. Some people just suck, willing to commit monstrous acts as long as they don't see the outcome and it provides for their family.

Just look at climate change. While there are some elements of conspiracy on the part of the energy industry, it still took years of growing evidence for majority opinion to actually shift. With or without evidence, many have chosen to dismiss it because it has such huge implications on our civilization.

Getting things massively wrong is a time-honored human tradition. It doesn't take a conspiracy, we do it naturally. Then people try to deflect accountability from serious consequences, especially relevant here as the public record of ME patients begging for help is decades-long and quite massive. But that's just people scrambling desperately in the face of real consequences they felt certain would never happen.

Edit: And at the risk of being too political, I think this summary of Watergate captures it all: "the truth is, these are not very bright guys, and things got out of hand". It's pretty universally true but here it just says it all.

 

https://twitter.com/user/status/1088472826338856960

 

Theo Anbu / A. T. Anhu
BPS / RCPCH views

According to his 2009 paper with A.G. Cleary at Alder Hey
- it's biological but with illness rights etc contributing
- they don't mention it's neurological, but do mention that some professionals call it medically unexplained symptoms or functional somatic symptoms
- CBT is recommended
- GET only starts once education is back on track
- emphasis on "maintaining" levels as if nobody gets progressively worse
- Oxford criteria - as taken from the Royal College of Paediatric and Child Health
- refers to a single RCT by Knapp as "evidence" that GET works
- Wessely, Chalder and others from the Wessely school dominate the reference listen
Appears to parrot the Royal College of Paediatric and Child Health views.

The weirdest diagram used to "explain" CFS/ME which does not include any illness thoughts but blames deconditioning and too much rest.

Download via
https://booksc.xyz/s/?q=anbu+chronic+fatigue+syndrome+

 

Theo Anbu is also lead paediatrician at Alder Hey, which is BACME recommended.

I'm sure people have here seem his IACFS presentation from 2011 where he sidesteps the science and talks about NICE guidelines compliance and how "positive" the patients and parents find the service (those that have kept attending that is).

 

https://twitter.com/user/status/1093094544009244672