CDC's Evidence Review of ME/CFS Treatments

[Pyrrhus]

Over 7K Sign #MEAction’s Response To Flawed CDC Review
https://www.meaction.net/2021/08/16/over-7k-sign-meactions-response-to-flawed-cdc-review/

We did it! #MEAction has officially submitted our public comment on the CDC’s flawed review of ME/CFS treatments.

We received 7,209 co-signs from across the ME community supporting our call for the CDC to stop this flawed evidence review from being published. By working together, you helped us send a strong message that GET & CBT are not safe or effective treatments for people with ME.

Now it is the CDC’s move. Will they listen to the ME community when we say we deserve better than a flawed, poorly scoped, and executed research review that continues to repeat the mistakes of the past and puts people with ME at risk of harm? The federal public comment process means that the agency is required to provide a response to our public comment and can’t simply ignore our criticism.

 

[Rufous McKinney]

"The federal public comment process means that the agency is required to provide a response to our public comment and can’t simply ignore our criticism."

the most commonly used response to a public comment is: Comment Noted

another method is to group similar comments, then : Comment Noted

 

[Marylib]

Two blog sites for those new to this kind of thing, perspectives from the US and beyond:

https://slightlyalive.blogspot.com/
https://twenty-years-and-counting.b...dGk9ASmm6tkHiQmrIqatSMCz1MHd3cEUm1bpR6VwmWNZI

 

[Pyrrhus]

I forgot to mention Solve ME's response to the CDC review:

Public Comments: The Systematic Review Report for Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
https://solvecfs.org/wp-content/uploads/2021/08/Public-Comments-CDC-Evidence-Review-August-2021.pdf


Solve ME is now asking U.S. citizens to contact their congressional representative to drive the point home:

Tell Congress that CDC Must Do Better
In a recent public comment period, Solve M.E. criticized the CDC for failing to meet the guidance of Congress. A recent, potentially damaging, draft review took two years of CDC resources, but doesn’t address any of the intentions published by Congress. Congress needs to know that CDC is failing to meet its instructions to:

• “collaborate with disease experts”
• “resolve the case definition issues”
• “counter medical misinformation and stigma”

Send a message to your members of Congress today and ask them to ensure CDC is meeting its commitments to Congress and all Americans touched by ME/CFS.

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00145

 

[katebrownell86]

The FDA does not seem to help anymore.Have lost trust in them.

 

[Pyrrhus]

Good news!

From #MEAction:

We have a positive development to report coming out of yesterday’s CDC ME/CFS stakeholder call. CDC has announced that it will NOT publish the problematic systematic evidence review of ME/CFS treatments in an academic journal. [...] CDC's Dr. Unger also stated in program updates that “In the interest of transparency, we will be posting the final report, comments & responses on our ME/CFS website.”

https://twitter.com/i/web/status/1471981152873422850