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

[Aurator]

I have replied to NICE today as follows:

...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?

Well put, Charles.

Unfortunately, I can see the evasive answer coming:... "not chosen because they are psychiatrists but because they are leading experts in the field"... "produced the best evidence available to date"..."error of adopting a dualistic stance"..."ME/CFS is a multisystem illness"..."needs a multidisciplinary approach"...yada, yada, yada.

 

[Art Vandelay]

I think the conflict of interest angle could be worth pursuing particularly because some of the likely members of the panel have their own fiefdoms that are based on using GET and CBT to treat ME/CFS.

If the NICE guidelines are changed to remove the emphasis on CBT and GET, then these panellists will lose out. It's not at all appropriate that they are involved in this decision-making process.

 

[charles shepherd]

Well put, Charles.

Unfortunately, I can see the evasive answer coming:... "not chosen because they are psychiatrists but because they are leading experts in the field"... "produced the best evidence available to date"..."error of adopting a dualistic stance"..."ME/CFS is a multisystem illness"..."needs a multidisciplinary approach"...yada, yada, yada.

Well put

You could probably get a job at NICE in their predicable replies dept!

C

 

[ukxmrv]

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.

Molly, my personal feeling is that as you have a contact then go ahead and use it. I've approached human right's lawyers before. It's always been a "no" before.

Amnesty has already been approached by different people over a number of years in different countries.

 

[Countrygirl]

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

I thought there were three :thumbdown: : Richard Eddleston of Nottingham; Ute Elliott of Sheffield and, of course, Tanya, who resigned in protest.

So is the present patient representative Richard or Ute? Is anyone in contact with them and aware of their possible role?

 

[user9876]

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

But we can ask about the process that NICE used to assess COIs and choose those individuals and not choose others. But I suspect it would make no difference NICE in their response to Tuller has shown they have a complete disregard for patients and I would have no confidence that they are capable of doing a review.

 

[ukxmrv]

I thought there were three :thumbdown: : Richard Eddleston of Nottingham; Ute Elliott of Sheffield and, of course, Tanya, who resigned in protest.

So is the present patient representative Richard or Ute? Is anyone in contact with them and aware of their possible role?

One of them has been asked and gave a cryptic reply which sounded more like a yes.

They seem to be wanting to keep their head down

 

[user9876]

I have replied to NICE today as follows:

Is it worth trying to contact the chair of the heath select committee in parliament about the issues surrounding NICE and PACE. To me there is a big point that there is an industry around delivering CBT who seem to expect and be given special treatment around who NICE consults and the strength of evidence accepted (i.e. accepting outcome switching). I assume that if drug companies notice they will be expecting similar concessions from NICE. Just because an industry delivers a service (i.e. therapists) rather than manufactures goods (drugs) doesn't mean they should get concessions.

 

[Sbag]

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

There were three on the original group - Ms Tanya Harrison, Mr Richard Eddleston, Ms Ute Elliot
I have posted on another thread a link to the original guideline group and who corresponded to the job descriptions of todays experts - let me know if you want me to repost here

 

[Chrisb]

This is the information on the official website. It rather looks as though she is not formally in position until Parliament returns:

The new Chair of the Health Committee is Dr Sarah Wollaston.
Following nominations and elections among MPs, Dr Sarah Wollaston has been elected Chair of the committee for the 2017 Parliament.
Dr Wollaston was the sole nomination for the position and was therefore declared elected, unopposed.
Speaking after the announcement of her election, Dr Wollaston said:
"I'm delighted to be returned as the Chair and look forward to working with MPs from across the Commons on behalf of those who use health services now and in the future."
The full list of elected committee chairs for the new Parliament was announced in the House of Commons by the Speaker, the Rt Hon John Bercow. The full list of Committee Chairs is here.
Dr Wollaston will formally take up position as chair of the committee when the remaining members of the committee have been named by the House

 

[Tilney]

I found a website claiming -

"The Medical Research Council’s secret files on ME/CFS

Margaret Williams 10th December 2009

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead. http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1
As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?‛ (http://health.groups.yahoo.com/group/MEActionUK/ 14th October 2009).
The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.
The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential."

This is the link
http://www.margaretwilliams.me/2009/mrc-secret-files-on-me.pdf

When you click on the link on the page
http://discovery.nationalarchives.gov.uk/details/record?catid=-5475665&catln=7

It does appear that there are 63 pages of something at the National Archives that will not be viewable until 2071
If any of it relates to ME/CFS does it influence what ME/CFS is until 2071?

 

[Learner1]

Couldn't you interest an investigative reporter with some major news organization in this?

Share the YouTube link from the OMF Community Symposium, then the letters exchanged with the committee, and info on the PACE trial controversy?

Its cheaper than hiring a lawyer...

 

[Countrygirl]

I found a website claiming -

"The Medical Research Council’s secret files on ME/CFS

Margaret Williams 10th December 2009

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead. http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1
As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?‛ (http://health.groups.yahoo.com/group/MEActionUK/ 14th October 2009).
The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.
The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential."

This is the link
http://www.margaretwilliams.me/2009/mrc-secret-files-on-me.pdf

When you click on the link on the page
http://discovery.nationalarchives.gov.uk/details/record?catid=-5475665&catln=7

It does appear that there are 63 pages of something at the National Archives that will not be viewable until 2071
If any of it relates to ME/CFS does it influence what ME/CFS is until 2071?

You can download the documents from this link: https://www.thegracecharityforme.org/documents/

 

[Esther12]

This is the information on the official website. It rather looks as though she is not formally in position until Parliament returns:

The new Chair of the Health Committee is Dr Sarah Wollaston.
Following nominations and elections among MPs, Dr Sarah Wollaston has been elected Chair of the committee for the 2017 Parliament.
Dr Wollaston was the sole nomination for the position and was therefore declared elected, unopposed.
Speaking after the announcement of her election, Dr Wollaston said:
"I'm delighted to be returned as the Chair and look forward to working with MPs from across the Commons on behalf of those who use health services now and in the future."
The full list of elected committee chairs for the new Parliament was announced in the House of Commons by the Speaker, the Rt Hon John Bercow. The full list of Committee Chairs is here.
Dr Wollaston will formally take up position as chair of the committee when the remaining members of the committee have been named by the House

Wollaston and her husband are more Wessely allies. She has promoted the 'militant patient' meme too.

 

[user9876]

Wollaston and her husband are more Wessely allies. She has promoted the 'militant patient' meme too.

I think it is still worth contacting the committee. I have no faith they will do anything but it is important to record their inaction. Basically to say to them your inaction will be noted and publicized when you are proved wrong.

I also think it is important in terms of stating why it is an issue that NICE's lack of transparency and willingness to accept weak evidence from one area (seemingly without proper review) will lead to future issues with drug companies. It seems to me that Wessely's group of friends are very anti-industry (or anti-drug companies).

 

[slysaint]

@charles shepherd
thanks for sending the letter and following this up.
Something else has occurred to me today on this, should NICE reply come back with a 'computer says no'.
As per my earlier post (ie the declaration of conflicts of interest form);
see "interests involving payment or financial inducement or any reputational interest related to academia that may be affected by the matters under discussion".
"I am aware that failure to declare relevant interests may result in an advisory committee member being required to stand down"
something along the lines that as they will not reveal the names of the topic experts could they at least:

Reassure the patient community by confirming that

the authors of the FITNET trial and their associates, or any of the authors or associates of the research papers cited by NICE in support of retaining the current guidelines are NOT topic experts as clearly there are/would be substantial conflict of interests.

 

[RogerBlack]

the [B]authors of the FITNET trial and their associates[/B], [B]or any of the authors or associates of the research papers cited by NICE in support of retaining the current guidelines[/B] [B]are NOT topic experts[/B] as clearly there are/would be substantial conflict of interests.

This needs further spelled out, as "interests, as if NICE decides CBT/GET is ineffective, their reputation would suffer, and in some cases future employment/funding in the area is in doubt.

 

[Stewart]

One of them has been asked and gave a cryptic reply which sounded more like a yes.

They seem to be wanting to keep their head down

That's understandable, but very disappointing. I was hoping that if the MEA approached them privately they might be willing to talk about their experiences as a member of the group (I assume that NICE will have got them to sign some sort of confidentiality agreement, so I appreciate there may not be much they can say).

 

[2kidswithME]

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?

We need to be careful our figures are accurate. I don't think the data support that 'hundreds' have been taken into care. Probably only a handful at most. Many more threatened, as Tymes trust reports, but where are the stats?

(I say this as a parent, whose school raised the question of legal action over my son's 'attendance issues' when he'd been ill about 3 years, but when presented with strong medical support, they quietly dropped the threat.)

 

[user9876]

We need to be careful our figures are accurate. I don't think the data support that 'hundreds' have been taken into care. Probably only a handful at most. Many more threatened, as Tymes trust reports, but where are the stats?

(I say this as a parent, whose school raised the question of legal action over my son's 'attendance issues' when he'd been ill about 3 years, but when presented with strong medical support, they quietly dropped the threat.)

I think the tymes trust report around 200 cases they have helped with but very few go very far. I've only heard of about 3 where children were taken and I'm not even sure there.