Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

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charles shepherd

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Predictable but disappointing written answer to a House of Lords PQ tabled by the Countess of Mar re membership of the group that has been reviewing the evidence for NICE

NICE are still dealing with an FoI request on the same subject

CS

Subject: Written answer to your QWA HL637 received from Lord O'Shaughnessy, the Department of Health



Lord O'Shaughnessy, the Department of Health, has provided the following answer to your written parliamentary question (HL637):

Question:
Her Majesty's Government who were the experts the National Institute for Health and Clinical Excellence consulted in their recent review of Clinical Guideline CG 53 for chronic fatigue syndrome and myalgic encephalomyelitis: diagnosis and management. (HL637)

Tabled on: 10 July 2017

Answer:
Lord O'Shaughnessy:

The National Institute for Health and Care Excellence (NICE) routinely consults a range of topic experts as part of its surveillance review process. NICE is currently consulting on a review proposal for its clinical guideline on the diagnosis and management of chronic fatigue syndrome and myalgic encephalomyelitis. NICE does not routinely publish the names of topic experts as they are not part of the decision making process for the surveillance review.

Date and time of answer: 19 Jul 2017 at 12:03.
 
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AndyPR

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charles shepherd said:
NICE does not routinely publish the names of topic experts as they are not part of the decision making process for the surveillance review.
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Confusion is a common state for me, but in particular I'm confused by this. Didn't the topic experts recommend that there was no need for a review? Or am I misunderstanding something?
 
Binkie4

Binkie4

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Hi -just to clarify whether anyone else has had an indication from their MP that they would sign the petition.

Perhaps people have been contacting stakeholders? I know MPs are not stakeholders but they do carry influence.

Am I alone in following this route? I think my MP may be willing to help further but am wondering whether he will find any like minded MPs. I remember I think Kelvin Hopkins, Labour, asking several written questions about ME a few months ago. Is anyone in contact with him?

Our MP changed in June but we had just persuaded the previous MP, different party, to attend an APPG meeting. The meeting was cancelled because of a vote in the House I think.

Question- is anyone trying to cultivate an MP?
 
Skycloud

Skycloud

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My MP is newly elected. All the response I have had so far is a standard email to the effect that she's new, still setting herself up in the HoC etc, and has had hundreds of emails so it is likely to be a wait before I hear anything from her. I'm not holding my breath, but will try again.
 
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NelliePledge

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It will be quite a challenge to cultivate my local MP I'm about to get involved in my local ME group as the person who has run it for the last 15 years is stepping down a group of us are meeting soon. I'm going to suggest plan a meeting to talk about advocacy activity with our local MPs
 
Stewart

Stewart

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AndyPR said:
Confusion is a common state for me, but in particular I'm confused by this. Didn't the topic experts recommend that there was no need for a review? Or am I misunderstanding something?
Click to expand...

You're not misunderstanding anything. I suspect this is NICE indulging in a bit of verbal semantics to avoid answering a question that they would find embarrassing.

"We consulted the topic experts as part of the surveillance review. And they made a series of recommendations - basically all of which were that there was absolutely no need to review the guidelines. And then *we* made a decision to accept all of those recommendations. We made that decision. Not the topic experts. So, strictly speaking, they weren't part of the 'decision making' process - they were only part of the 'recommendation making' process. They didn't have any say in the decision at all.

It would be totally wrong to try and argue that they - as the people who made the recommendations that were all subsequently accepted - have had any say at all in the decisions that've been made. Totally wrong. Because in theory we could have rejected all of their recommendations. Obviously we didn't - we accepted them all. We *always* accept our topic experts' recommendations - that's how our guideline review process works. But we *could* have. We chose to accept the recommendations - all of them - as we always do, and that decision was totally ours. The topic experts had no say in it. See? They were not part of the decision making process. That was all us.

So no, we're not going to tell you who the topic experts were - we will however continue to pride ourselves on our transparency of our decision-making processes."
 
Cinders66

Cinders66

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The surveillance report summary form NICE. Explanation of decision. They want to keep it off the static list because of exciting research like Crawleys FITNET in the pipeline. They are behaviour stuff obsessed

It explains why they are making their decision and what they are doing and it doesn't look good.

https://www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
 
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charles shepherd

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We are linking this official closure of the MEA petition today with the intention of including the result (i.e. over 14,000 signatures) with our submission to NICE, which will also be sent in later today

In other words we wanted to try 'concentrate the mind' of people and get as many signatures on it by the end of today - and it will stay open till midnight - rather than let people assume they could always sign up at a later date

I don't know if it could be extended beyond midnight for 'late arrivals'

CS
 
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