Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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MEAction Response to CDC
#MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS treatments. Sign our form by August 15, 2021 to have your name added to #MEAction’s response before we formally submit it as a public comment on August 16."

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CDC review concludes CBT & GET are effective treatments
Is this CDC evidence review really that bad? How big of a deal is this? Yes, it is that bad. The CDC review concludes that the controversial and widely-disputed interventions of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) are likely beneficial in treating ME/CFS. While the review waffles a bit about how “strong” their conclusion is, they state that nothing else has sufficient evidence of being an effective treatment for ME/CFS other than GET and CBT. It does not warn that these treatments can be harmful to people with ME.

There are plenty of issues with this CDC review. #MEAction’s response focuses exclusively on the CBT & GET findings, which we consider to have the potential to do the most harm to people with ME."

https://www.meaction.net/2021/08/02/sign-on-to-meactions-response-to-flawed-cdc-review/
 
Snowdrop said:
Who is responsible for this new CDC review findings?
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Pacific Northwest Evidence-based Practice Center of Oregon Health & Science University, the same place that did the 2014 AHRQ evidence review (https://www.ncbi.nlm.nih.gov/books/NBK293931/) .( The CDC evidence review does not take into account the 2016 addendum(https://www.ncbi.nlm.nih.gov/books/NBK379582/) to the 2014 review.)
[ETA the key questions in the 2014 review for AHRQ and for the 2021 review for CDC were different.]
 
Snowdrop said:
Thanks @Trish.

I used up all my energy with my pointless rant and there's a lot to take in there.

I take it from Denise's response the difference in tone is because the key questions have changed?

It just all sounds like politics to me but can't quite grasp why or for who's benefit?
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The CDC rationale for the evidence review was that it grew out of a CFSAC recommendation and was to be the basis for CDC to develop treatment guidelines for ME.
 
Denise said:
The CDC rationale for the evidence review was that it grew out of a CFSAC recommendation and was to be the basis for CDC to develop treatment guidelines for ME.
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I would certainly like to know more about the CFSAC (Solve) recommendation. How recent?
And why, were the previous guidelines an issue?

Sorry, if I read anything about this previously I have no memory.
 
I have signed this, but I still do not really understand what is going on. (Possibly nobody does.) Why undertake this review if nothing was going to come of it? Who benefits from this? Just seems like an odd thing to do at an odd time.
 
Ariel said:
I have signed this, but I still do not really understand what is going on. (Possibly nobody does.) Why undertake this review if nothing was going to come of it? Who benefits from this? Just seems like an odd thing to do at an odd time.
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Hmmmmm - I will try to be positive in my wording. The review came about as a precursor to development of treatment guidelines. When completed, it was noticed that there wasn't enough new, solid, evidence for the development of treatment guidelines so that idea was shelved.
However CDC has contemplated having it published in a journal. (Without any treatment guidelines.)
I guess CDC might contend that they spent the money for this so they should do something with it.
BUT publishing it would be harmful because it does not emphatically disavow CBT and GET and in so doing, leaves PwME open to lots of harm.
Because CDC's influence extends far beyond the US borders this would impact people in other countries as well.
Bottom line for me is CDC should NOT publish this.


[So much for trying to be positive... ]
 
MEAction's response said:
Because of the extent of the problems with this systematic review, a line-by-line approach would not be feasible. There are aspects of this review that are deeply troubling, but which it is impossible to explore in sufficient depth at this time. Instead, these public comments are focused on the findings from the review on CBT and GET treatments, which have the potential to do the most harm to people with ME/CFS.

The public comment response below highlights four key arguments for why the findings from this review are fundamentally flawed and should not be published:
  1. Applicability of Findings
  2. Risk of Bias
  3. Exclusion of Harms Evidence
  4. Interpretations of Results
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I haven' t read all of the ME Action response yet, but the above gives an idea of its content. I've signed to support the response (which people should be aware is still evolving as they get feedback). I think it's important that the CDC gets a clear message. Given the previous gains in the US, that this CDC review could get it so wrong is, well, remarkable.
 
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Hutan said:
I haven' t read all of the ME Action response yet, but the above gives an idea of its content. I've signed to support the response (which people should be aware is still evolving as they get feedback). I think it's important that the CDC gets a clear message. Given the previous gains in the US, that this CDC review could get it so wrong is, well, remarkable.
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That is why I am concerned about it. I don't understand their process. Did they not have a reason for changing the guidance in the first place? Who is hovering to stick it back in? The situation has gone backwards before there. It's especially bizarre given the contents of their web pages on ME/CFS, which as they are updated are getting better. Why bring this conversation back?
 
Sly Saint said:
long-covid, insurance companies?
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But if the idea is to do CBT or "therapy" and GET on Long Covid patients, how would this specifically further that goal?

Also - they have been saying fairly consistently that the large amount dollar wise of new LC research may help ME/CFS patients (mainly as a way of not addressing the issue head-on, of course) - why look back to old exercise and therapy studies for ME/CFS to look at how to deal with long covid?

I do understand that there is no unified consistent response, but still. Just comes across as either rank incompetence, meaningless bureaucracy with potentially unintended consequences, or someone involved trying to muddy the waters - or a combination of all three.
 
I think the possible (income protection/permanent disability) insurance company connection (and it's just speculation) is that if CBT and GET are said to work, then the suggestion is that there is a treatment. So, the insurance companies can require people to do the various treatments before they qualify for any permanent disablement insurance payouts. And there's a lot of money at stake - payments of substantial percentages of salaries for many years.

And of course, the whole idea of CBT and GET is that you have to want to get well for them to work. So, identifying those as (successful) treatments opens up the idea of the person still sick with ME/CFS as someone who hasn't tried hard enough to be well. And who therefore does not deserve an insurance payout.
 
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