Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

Andy

Andy

Retired committee member
This was created to support @Graham 's open letter, which can be found here, https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/

We call on NICE to ensure:

1. The process of deciding who determines the membership of the Guideline Committee is open and involves stakeholders.

2. Whoever appoints the members of the Guideline Committee does not have any involvement in research into CBT-GET or is currently using these interventions to try to treat ME/CFS or is a colleague of anyone associated with the CBT-GET model.

3. The selection of members of the Guideline Committee is also an open process and involves stakeholders.

4. No one who has previously been a member of an ME/CFS Guideline Committee is eligible to sit on this new committee.

5. No one with a conflict of interest is allowed to be a member of the Guideline Committee, and that conflict of interest includes any financial interest or researcher allegiance or close working association with someone linked to the CBT-GET model.

6. Stakeholders should have a right of appeal with cause against members selected.
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https://www.change.org/p/sir-andrew...ommittee-for-me-cfs-is-transparently-unbiased

ETA: James Coyne has posted supporting it - https://www.coyneoftherealm.com/blo...concerning-the-guideline-committee-for-me-cfs
 
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There's also an introductory video which may be useful: youtu.be/7Y6XFipQigE

There's going to be a committee, and there's going to be a new set of guidelines, whatever we do. So we need to make an effort to ensure that the committee is balanced, unbiased, and capable of understanding the scientific process. There never has been any evidence that CBT and GET were effective treatments for ME/CFS, quite the opposite in fact, so clearly previous committees were unable to comprehend the nature of scientific reasoning and proof.
 
Signed (saw it posted on Twitter a few days ago and it was also posted on a German Facebook page with an automatic translation, so it seems to get out there :)).
https://www.change.org/p/sir-andrew...ommittee-for-me-cfs-is-transparently-unbiased

PS: This is what it looks like when I'm holding a pen to sign a petition:
article-2211640-154E1B96000005DC-254_306x423.jpg
 
Luther Blissett said:
Nerdy says 'Hi'. He's missed signing things with a group, and got all nostalgic.
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No worries, :slugish: and :emoji_chipmunk: (<-- nearest thing to a dormouse I could find) still work side by side against B(P)S! Watch out Wessely, these two militants have a pen and are going to use it!

Graham said:
Not far to go now to the 250,000 who have been "diagnosed" with various labels, but who end up in the same bucket. Has it been plugged on Twitter yet? I can't Twit, so have no idea.
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It's also signed by international people, so aim at 17 million signatures! :) I've signed it when I saw it on Twitter, so it was definitely out there (but I don't know how often it was retwited).
 
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