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

Countrygirl

Senior Member
Messages
5,400
Location
UK
http://www.meassociation.org.uk/201...the-identity-of-topic-experts-13-august-2017/

Friday, 11th August 2017

Dear Dr Shepherd

Thank you for your follow up email about the topic experts in respect of the surveillance review for the CFS/ME guideline.

In your email you refer to a request for details of membership of the expert group that reviewed the evidence for NICE. There was not a topic expert group or panel as such, but we did ask topic experts and members of the original guideline development group for their opinion.

To be clear, it is the NICE surveillance team that conducts the literature searches and reviews the evidence. They summarise the relevant evidence and highlight any studies that may have an impact on our recommendations. Information identified by the surveillance team forms the basis of the review proposal which is considered by NICE’s Guidance Executive. I can see that my colleague XXXX provided details of the roles within the surveillance team in his previous response.

The final decision about whether an update is needed is based on a balanced assessment of new relevant evidence published since the guideline was developed, the view of topic experts, feedback during consultation and other sources of information on the continued relevance of the of the guideline. The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process before submission to Guidance Executive. It is Guidance Executive that takes the decision to update the guidance or not.

You commented on our previous email where we say that ‘we do not routinely publish the identities of topic experts’. The use of the word ‘routinely’ was meant to indicate that this is not part of our process, rather than they are available on request. As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.

For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1)

Kind regards

Click on the link for the full article
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
-neurology (2), good relevant
-psychiatry (3), irrelevant/biased perspective in this context
-paediatrics (1), could be relevant but likely someone who is really psych too
-patient representative (1) good to have patient voice but of course we have no idea how informed they are of the nature of research methods/neuroimmune type stuff, or why they were recruited

So could be 5 out of 7 biased against advising full review :rolleyes:
 

Countrygirl

Senior Member
Messages
5,400
Location
UK
(Naughty I know but in view of the suffering she inflicts on families and children................well deserved.
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user9876

Senior Member
Messages
4,556

They have clearly decided not to say to the ME association what they said to Tuller which is ME patients are too violent and dangerous to have the information - with the evidence for this being an article in the Guardian (previously dismissed by an information tribunal) and that some patients communicate and criticize NICE on forums of put in FoI requests (both our democratic rights). 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. And of course in doing so NICE are adding stigma to patients.

If I were a politician looking at NICE I would be asking for their head to explain or resign for the anti-democratic accountability and stigmatizing message they are giving.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
It might be helpful to send NICE ME denial lobby a link to the American OMF youtube presentation on the latest biological CFS research, such as this:


UK NICE representatives in between smoking cigars and paying someone to wash their Range Rover Sport may rhen take a causal look at the video screen and realize they had better pull their britches up, or get over taken by a superior American vehicle - honest Science.

The current denial of ME as a form of functional somatic syndrome, is about to get exposed on a world scale, so it would be mindful for nice to very rapidly drop this concept of ME = CFS and CFS = CF psych, because otherwise we will have the ludicrous situation of American Scientists demonstrating a metabolic brain disease involving pathogens and autoimmunity, with a diagnostic test, with the British ME denial response of repeating the findings (in the UK fatigue clinics in patients who don't have ME) and repeating the old lie of ''we can't find abnormalities in two CFS clinics in London''.

All patients will do if denied appropriate revisions of disease management is obtain the test, and sue NICE for dereliction of duty. So now is the time for NICE to live up to it's name and learn to be adult and stop being nasty.

NICE should read the latest American research and accept that disease denial of ME will no longer work, because assays are being developed, in multiple counties, that cannot be explained away, and also will show that EXERCISE will worsen the abnormal findings, and this is critical to NICE, as NICE recommend GET which is harming patients at a cellular level.

This cannot be tolerated ethically in terms of patient abuse in wider society, or at a professional academic level as it's dishonest to recommend GET at this point in time, now the research has advanced.
 
Messages
13,774
-neurology (2), good relevant
-psychiatry (3), irrelevant/biased perspective in this context
-paediatrics (1), could be relevant but likely someone who is really psych too
-patient representative (1) good to have patient voice but of course we have no idea how informed they are of the nature of research methods/neuroimmune type stuff, or why they were recruited

So could be 5 out of 7 biased against advising full review :rolleyes:

I wouldn't assume UK neurology is good.
 

Countrygirl

Senior Member
Messages
5,400
Location
UK
I wouldn't assume UK neurology is good.

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.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Isn't there anyone in the UK media who covers scandals? After what I heard at the OMF Symposium yesterday, its impossible to come away believing NICE's position.

Its scandalous that there's no immunologist on the committee.

I had a nice chat with Cindy Bateman at the Symposium yesterday. She is passionate about training doctors about how to diagnose and treat patients. You should be demanding that your NHS send some doctors out to Salt Lake City to be in her first class, or bring her to the UK to teach them.
 
Messages
15,786
-neurology (2), good relevant
Richard Grunewald, the neurologist running a project for NICE to create a doctor's guide for Suspected Neurological Conditions, is a blatant ME-denialist. Statements made in the document, which reflect a consensus including several other neurologists, would indicate that the ones involved with NICE seem to be a rather rotten bunch.

A couple excerpts:
Recommendation 31 – Recurrent limb weakness Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically-explained illness and cause difficulties in diagnosis and delineation. Recurrent episodes of limb weakness, hemiparesis or paraparesis are not uncommon in people with an existing functional neurological disorder; and with other functional disorders for example, chronic fatigue syndrome and fibromyalgia. The committee considered it inappropriate to refer people with such episodes for investigation after each episode, and considered that psychological support would often be more appropriate than a neurological services re-investigation. The committee emphasised that normal and symmetrical tone and deep tendon reflexes significantly reduce the likelihood of an underlying organic disorder. A recommendation which covered these considerations was thought likely to help GP’s to direct these patients to more appropriate channels than neurology services.
Recommendations 36–37 –
Chronic fatigue syndrome, fibromyalgia and functional neurological disorder Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically explained illness and cause difficulties in diagnosis and delineation. Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS; ME) and may be present in people with fibromyalgia and functional neurological disorder. The committee also considered that people may benefit from an explanation that functional symptoms are commonly accompanied by problems with concentration and memory, and that this may reduce the overall load on clinical services.

I now have absolutely no faith in NICE to honestly and openly carry out its appointed functions.
 
Messages
78
I wouldn't assume UK neurology is good.
The original list of people on the guideline committee can be seen here https://www.nice.org.uk/guidance/cg53/chapter/Appendix-A-The-Guideline-Development-Group

Nice told me that Topic experts and members of the original guideline committee are asked for their opinion. So it would be ok to presume that some of the original list are part of this process. Of the original list there are 2 paediatricians ( Esther Crawley, David Vickers), 1 neurologist (Dr Richard Grünewald), 1 psychiatrist (Dr Alastair Santhouse), 3 patient representatives (see link for names).
They will of course be using different people on their expert panel but if any of the original members were helping then I assume it would be people listed in brackets.

Interestingly they have upped the number of psychiatrists that were consulted in the initial group from 1 to 3, there is a psychologist on the original list but I assume they would have listed this separately.

Interesting fact no 2 - Dr Richard Grünewald, Consultant Neurologist, Sheffield is the chair of another guideline committee which is currently in consultation - the one on Suspected Neurological Conditions. If you go and look at the information for this consultation there is a huge discrepancy in the data available https://www.nice.org.uk/guidance/indevelopment/gid-cgwave0800/documents :
  • There is a document which lists the current committee members
  • the minutes from meetings in recent years are available
Looking through the comments from stakeholders for this guideline there is a lot of input from fibromyalgia groups saying that it should be included.

Have a look at the info and you can make your own assumptions on who the neurologist is for the ME group and who else might be involved.
 

Aurator

Senior Member
Messages
625
"However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act."

Has Dr Shepherd or anyone else been told what two sections specifically NICE are claiming exemption from disclosure under? It would be useful to know that at least. Or do we have to make a FOI request even to know that?

"The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process before submission to Guidance Executive. It is Guidance Executive that takes the decision to update the guidance or not."


Not that this way of doing things is remotely incestuous, you understand.

I think we already know what NICE's final decision on the matter will be.

FOI requests to NICE need to continue to be made all the more insistently. They exist precisely to safeguard against this kind of autocratic unaccountability.
 
Messages
78
FOI requests to NICE need to continue to be made all the more insistently. They exist precisely to safeguard against this kind of autocratic unaccountability.[/QUOTE]

Looking through the NICE board meeting minutes the number of FOI requests get reported to them. If there is a huge increase then it might raise the awareness level to them if they aren't taking any of the letters sent to them seriously
 

Cheesus

Senior Member
Messages
1,292
Location
UK
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.

That is exactly what a neurologist said to me only a couple of weeks ago. He then went on to tell me I had no organic disease. This was at the start of the appointment. He hadn't examined me and nor had I spoken.
 
Messages
1,478
That is exactly what a neurologist said to me only a couple of weeks ago. He then went on to tell me I had no organic disease. This was at the start of the appointment. He hadn't examined me and nor had I spoken.
Yep,they are mostly a waste of time. Egos too big you see, they can't see past there enormous self importance or even bother to be up to date in research in their field. Why would they need to stay ahead of their field when most people don't understand it. Far easier to BS their way through and have an easy life.

I apologise in advance to any genuinely good neurologists out there. So far out of the 8 I have received treatment from they have all been arrogant pricks and at least half of them with accompanying sadistic tendencies. :nervous: