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.
Please add your name to #MEAction’s response and share it with others. We will continue to update our draft response based on further review and feedback we get ahead of the final submission deadline. You can submit suggestions for improvement to our draft here. You can submit your own public comment to CDC here. Share your story about how graded exercise therapy or cognitive behavioral therapy treatments have been harmful to you or your loved ones!
#MEAction will host a town hall meeting to answer questions about our draft response to the CDC review on Monday, August 9 at 4pm ET / 1pm PT. RSVP here.
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. In our response we offer four key arguments for why these findings are fundamentally flawed and should not be published. We address the issues of:
- Applicability of Findings
- Risk of Bias
- Exclusion of Harms Evidence
- Interpretations of Results
It is pretty incredible that CDC has released a technical evidence review so flawed that it claims GET and CBT are effective treatments for people with ME—four years after they removed their ME/CFS recommendations for GET and CBT from their website! How we got here is a long story; you can read more here. The bottom line is that publishing this review will lead to further confusion about the appropriate treatment for people diagnosed with ME/CFS as CDC defines it. The review, if published, is certain to be abused and put an already vulnerable group of patients at risk of harm.
While the CDC has announced that they don’t have plans to move forward with developing federal treatment guidelines based on the evidence review at this time, there are still plenty of ways its publication could cause confusion and harm. That is why we need your support to tell CDC not to publish this flawed review.
CDC approach is holding people with ME trapped in the past
This flawed review raises even bigger questions about CDC’s ME/CFS program. If CDC gets a relatively straight-forward research review of ME/CFS treatments this wrong, then what other related ME/CFS research might they botch next? How will their institutional attachment to the failed, decades-old approach to “chronic fatigue syndrome” research hold people with ME trapped in the past?
It is worth remembering, as David Tuller’s reporting has shown, that when the CDC removed CBT and GET recommendations in 2017, agency officials wouldn’t admit that their previous recommendations had been a mistake. Instead they chose to pretend that the problem had been readers who “misinterpreted” their advice.
Most recently, at a September 2020 CDC ME/CFS stakeholder call, #MEAction advocates again pressed the CDC to issue a public statement that clearly refutes the use of GET and CBT as treatments, knowing their potential to do harm to people with ME. The CDC declined and cut off further conversation on the topic. When questioned by a caller about references to the PACE trial that remained in some of CDC’s medical education materials, the agency official defended their presence saying “…we need to acknowledge the publications that are out there that have found some benefit from graded exercise therapy.”
The CDC is trying to publish a flawed evidence review on ME/CFS treatments that isn’t clear about the true ineffectiveness and potential for harm of GET and CBT “treatments” for people with ME. Please join us in demonstrating strong community opposition to this flawed CDC review.