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 In our response we offer four key arguments for why these findings are fundamentally flawed and should not be published.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.
14 thoughts on “Sign on to #MEAction’s response to flawed CDC review”
thanks for fighting to change the stupid CDC information!!!
The ME community/patients should have a major influence as to any recommended treatment. Too much harm has come from giving most practitioners who don’t understand ME/CFS patients this type of “guidance.” Please listen to patients.
Thank you.
Maybe you should let us read the review before we sign?
Thanks.
There is a red button above that says Read our Response.
I think it would be a great idea to put your complaints about the CDC’s study into a Youtube video so that your message can be more widely disseminated.
How can the CDC go against AHRQ summary of evidence on GET & CBT, 2016, archived but much more recent than PACE.
https://www.ncbi.nlm.nih.gov/books/NBK379582/
‘Although future studies should refrain from using the Oxford (Sharpe, 1991) case definition as eligibility requirements, this early work provided a foundation on which future work can expand. This addendum has delineated differences in treatment effectiveness and harms according to case definitions, highlighting studies that used the Oxford (Sharpe, 1991) case definition and how these studies impacted our conclusions. Additionally, results of studies evaluating CBT have been considered independently from other counseling and behavioral therapies. Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion. Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS.‘
There is NO benefit from graded exercise therapy for us with ME/CFS.
It is the most dangerous for us with ME/CFS to do.
The study doesn’t relays on ME/CFS patients, and it’s shameful it has been published. It has harmed so many people and fooled doctors and prolonged help for people with ME/CFS.
Because they couldn’t distinct ME/CFS from burnout and depression and other illness, they have mixed everything up and published false results.
This has to stop now!
It’s a shame and
Thank you #MEAction and Ben for all you do to advocate for us.
Do we have a list of names at the CDC who intend to sign off on these flawed recommendations? Eventually the chain of command leads to somebody our elected representatives (i.e. Pres. Biden) have influence over.
I have had to watch what GET has done to our daughter. It’s been the worst thing for her and has made her ME bad. She went from a young adult with a fairly active life with rest between to a young adult who is house bound and sometimes unable to even lift her head. Most days it’s choosing to shower, eat, or get out of bed. There’s never enough energy for more than that and even that is pushing it. We never expected that she would get this bad this fast in her life. This is the most harmful thing the CDC can do!
I think that the CDC report will have a pernicious effect on the sort of physician who says “TAKE A SHORT WALK EVERY DAY AND EACH DAY MAKE IT A LITTLE LONGER.” End of advice. The report affirms that no real problem exists except in the patient’s attitude.
This method can be highly detrimental to people with ME/CFS due likely to mitochondrial damage. Without first repairing the damage, for which there is as yet no known method, further irreparable damage can be done with even graded, supposedly gentle exercise programs. Please refrain from promoting this unfounded supposed treatment.
Excellent response. In the discussion about criteria and heterogeneity, I think that you should refer to two of the articles from the P2P workshop. You should point out that it is important to take into account the guidelines and conclusions from earlier consensus reports.
“Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions.”
Haney E, Smith ME, McDonagh M, et al. Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop. Ann Intern Med. 2015;162(12):834-40.
“Furthermore, the multiple case definitions for ME/CFS have hindered progress. In particular, continuing to use the Oxford definition may impair progress and cause harm. Therefore, for progress to occur, we recommend that this definition be retired;”
Green CR, Cowan P, Elk R, et al. National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ann Intern Med. 2015;162(12):860-5.
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