CDC's Evidence Review of ME/CFS Treatments

Pyrrhus

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So I know we're all trying to ignore the CDC due to, well, 2020- but this is actually urgent.

For those unaware, the U.S. Centers for Disease Control (CDC) commissioned a systematic review of the scientific literature surrounding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specifically, the review explored:
  • Evidence of the benefits and harms of specific treatments for ME/CFS and its symptoms
  • Benefits and harms to the patient of diagnosing ME/CFS
  • Prevalence of non-ME/CFS conditions in people presenting for evaluation of potential ME/CFS.
Unfortunately, well, you can guess what came next.

MEAction said:
On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public comments on its systematic review draft report for diagnosis and treatment of ME/CFS which will remain open until August 16, 2021.

You might not realize it [...], but this is the latest milestone in a years-long fight by ME advocates to stop the harm wrought by the PACE trial and other flawed CFS research that has been misused to promote the use of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as purportedly effective “treatments” for people living with ME.
[...]
The report reproduces many of the same problems in the 2014 review, showing effectiveness of CBT and GET based on PACE and similar Oxford-criteria studies.
Source: https://www.meaction.net/2021/06/04...view-of-me-cfs-treatments-for-public-comment/


#MEAction has now responded to the CDC's flawed review:
MEAction said:
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.

We need to demonstrate strong community opposition in order to prevent this CDC review from seeing the light of day. This review is fundamentally flawed and minor revisions cannot fix it. We need your support to send a clear message to the CDC that the ME community does not want this review to be published.
[...]
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.
Source: https://www.meaction.net/2021/08/02/sign-on-to-meactions-response-to-flawed-cdc-review/


Here is MEAction's full response:
https://www.meaction.net/wp-content...tion-Draft-Response-CDC-Systematic-Review.pdf


Here is the petition you can sign if you wish to support MEAction's response:
https://act.meaction.net/page/31886/petition/1
 
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Pyrrhus

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#MEAction town hall meeting
https://www.meaction.net/event/town-hall-qa-on-meaction-response-to-cdc-review/

MEAction said:
AUGUST 9, 2021 @ 4:00 PM – 5:00 PM AMERICA/NEW YORK

Attend #MEAction town hall meeting on Monday, August 9th for a Q&A on our draft response to the CDC systematic evidence review for ME/CFS treatments.
[...]
Read more about the CDC evidence review here:
https://www.meaction.net/2021/08/02/sign-on-to-meactions-response-to-flawed-cdc-review/
https://www.meaction.net/2021/06/04...view-of-me-cfs-treatments-for-public-comment/
 
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I would encourage all of us to: get out a piece of paper, an envelope, stamp and pen.

Write a specific simple comment letter, supporting ME Actions Review comments, if appropriate.

We need to bury the CDC in real paper. When they see envelopes, stamps, sentences- it counts FAR MORE Than random petitions that take no effort.

And then CC your congressperson. And Senator.

How PACE could be adopted in the US, I can't comprehend that.
 

SnappingTurtle

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So I know we're all trying to ignore the CDC due to, well, 2020- but this is actually urgent.

For those unaware, the U.S. Centers for Disease Control (CDC) commissioned a systematic review of the scientific literature surrounding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specifically, the review explored:
  • Evidence of the benefits and harms of specific treatments for ME/CFS and its symptoms
  • Benefits and harms to the patient of diagnosing ME/CFS
  • Prevalence of non-ME/CFS conditions in people presenting for evaluation of potential ME/CFS.
Unfortunately, well, you can guess what came next.


Source: https://www.meaction.net/2021/06/04...view-of-me-cfs-treatments-for-public-comment/


#MEAction has now responded to the CDC's flawed review:

Source: https://www.meaction.net/2021/08/02/sign-on-to-meactions-response-to-flawed-cdc-review/


Here is MEAction's full response:
https://www.meaction.net/wp-content...tion-Draft-Response-CDC-Systematic-Review.pdf


Here is the petition you can sign if you wish to support MEAction's response:
https://act.meaction.net/page/31886/petition/1
I signed my name.

I tried to add my own public comment but their website kept erroring out. Hopefully that is not intentional.
 

lenora

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Hi @Pyrrhus......Just this morning I read a report from #MEAaction and nothing about this was mentioned. Very odd indeed. The CDC has been wheedling out of CFS research (ME today) for years.

For all those who would like researchers (likely researchers themselves) to know what it's like to experience ME, now's your chance. #MEAction is trying to overcome the difficulties of the past year of COVID and is actively looking for volunteers to help in this regard.

The Zoom Conference held last month (I'm quite sure) outlines this. The next meeting is upcoming and now is the time for you to speak your piece. This would be a worthwhile place to put your experience(s) to use. Please help them....us and yourselves. Contact #MEAction.com.

Also, I read somewhere that 400 HIV positive people have developed side-effects from the COVID immunization (don't know which vaccine), but that's a pretty high number in a fairly small group. It may be worth our while to contact any AIDS organizations and try to piggyback with them as they wield a lot of power. Yours, Lenora.
 

Pyrrhus

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I signed up for MEAction's town hall meeting today, but due to brain being liquified, I can't figure out how to attend. Has anyone else done this and can explain the RSVP email to me? There's a "ticket", but no join meeting link.
Ignore the "ticket number" and the "security code" in the RSVP email.

To join the meeting, simply click on the "Meeting URL" below and then click on "Join with Browser".

You can also join the meeting with the "Bluejeans" conferencing app, or use a phone to dial in.
MEAction said:
Meeting URL
https://bluejeans.com/422344930/2884

Meeting ID
422 344 930

Participant Passcode
2884

Want to dial in from a phone?
Dial one of the following numbers:
+1.408.317.9253 (US (Primary))

Enter the meeting ID and passcode followed by #
 

Pyrrhus

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