USA 2026: Trial of Pacing and Graded Exercise

Sly Saint said:
The CDC removed Graded exercise therapy and CBT from its website in 2017
meassociation.org.uk

CDC removes CBT and GET as recommended treatments for ME/CFS | 11 July 2017 - The ME Association

In America, the Centers for Disease Control and Prevention (CDC) […]
meassociation.org.uk meassociation.org.uk

eta: https://undark.org/2017/07/26/cdc-chronic-fatigue-graded-exercise/

it was after the IOM report in 2015
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From memory the contemporary AHRQ report on ME/CFS also helped that along.

 
Sean said:
I think this is the current version of it, as of 2021:

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That needs another update, because it only references the old an deeply flawed 2007 Nice Guideline 53, and not the later 2021 NG206 which was presumably too late for this to heed.

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@dave30th Would you know how to get this updated, so advice in NG206 got accounted for in an update to this document? Feels very wrong for this to be the most up to date reference for those in the US to be relying on, and could explain why such research proposals are still being bandied around in the US? Not read it through, but White, Sharpe, Crawley etc. all get referenced, so potentially with unwarranted credibility. Without NG206 awareness the whole thrust of this CDC document could be significantly skewed.
 
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Sean said:
I think this is the current version of it, as of 2021:

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The 2021 review was done by CDC and has not been used as evidence for information on CDC's website.

The 2014 review was done by a different agency - AHRQ - and then reanalyzed in 2016. In the 2014 report, they had concluded Oxford should not be used so in the 2016 reanalysis, they eliminated those studies and concluded there was lack of evidence for GET. The 2016 reanalysis, the IOM report and Tuller's 2015 blog, the Troubling Case of PACE were all used by advocates to support our push with CDC to change their website.

Regarding the 2021 report - while CDC ordered that review be done, the actual review was done by the same review practice group that had done the 2014 review and 2016 reanalysis. I was one of the key informants for that 2021 review and can attest the review group ignored the feedback we gave. The 2021 review was so awful that US advocates pushed the CDC to not allow the report to be published. But CDC still allowed the review group to place the final report up on CDC's website for historical purposes, despite our objections. So unfortunately, its still out there and gets picked up once in a while.
 
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Barry said:
That needs another update, because it only references the old an deeply flawed 2007 Nice Guideline 53, and not the later 2021 NG206 which was presumably too late for this to heed.

View attachment 33207

@dave30th Would you know how to get this updated, so advice in NG206 got accounted for in an update to this document? Feels very wrong for this to be the most up to date reference for those in the US to be relying on, and could explain why such research proposals are still being bandied around in the US? Not read it through, but White, Sharpe, Crawley etc. all get referenced, so potentially with unwarranted credibility. Without NG206 awareness the whole thrust of this CDC document could be significantly skewed.
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I agree with your frustration. But given this was not officially published, I'm less concerned about this than Cochrane's review still being out there.

Is the proposed study to be conducted in the US? Maybe the deleted form had that in it? And did they reference the 2021 review? Or is it just a concern that they could reference that?
 
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Barry said:
@dave30th Would you know how to get this updated, so advice in NG206 got accounted for in an update to this document? Feels very wrong for this to be the most up to date reference for those in the US to be relying on, and could explain why such research proposals are still being bandied around in the US? Not read it through, but White, Sharpe, Crawley etc. all get referenced, so potentially with unwarranted credibility. Without NG206 awareness the whole thrust of this CDC document could be significantly skewed.
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I would guess the document and review would need to be completely redone with an update--I mean, I don't see how you would update one reference in an old document or review that's already been published. People in US rely largely on the guidance directly on the CDC site--I doubt very many are downloading this report to read it at this point. And even with that old NICE document in there, the agency had already rejected the CBT/GET paradigm and made changes to its site in 2017, if I remember the year correctly.
 
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