People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). The invited speaker at May 13th’s CDC Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing the #MillionsMissing yet again!
Information on CDC’s ME/CFS SEC calls can be found here: https://www.cdc.gov/me-cfs/programs/meetings.html. See the 2/13/20 call transcript where a person with ME questioned CDC on this speaker’s CBT/GET info.
What happened on CDC’s SEC call wasn’t a mistake or community misunderstanding. This is a predictable result of continuing issues in CDC’s ME/CFS program. It also wouldn’t happen if people with ME were treated as stakeholders in CDC communications about our disease.
Remember that CDC never apologized or even acknowledged its ME/CFS recommendations had changed when CBT & GET were removed from its website in 2017.
We must all continue to push CDC to do better. Email Dr. Unger at [email protected] and let her know the latest SEC call misinformed doctors and puts people with ME at risk. #MEAction will remain laser-focused on structural barriers/technical decisions at CDC that perpetuate this misinformation.
See below for a sample email that you can send to Dr. Unger.
Dear Doctor Unger,
The invited speaker at May 13th’s CDC’s Stakeholder Engagement & Communication (SEC) Call presented a slide on ME/CFS management that suggested “gradual graded exercise” and “cognitive behavioral therapy” for ME/CFS. This, as you know, is a danger to people with ME/CFS because:
- People have suffered terrible harm due to graded exercise therapy (the new NICE guideline in the UK was updated to reflect this and GET is removed from the CDC website).
- As for cognitive behavioral therapy, whenever recommendations to support good mental health are provided for ME/CFS, they should never be presented as disease modifying.
David Tuller is correct when he observes, “At this point in the ME/CFS debate, it is arguably irrelevant what anyone means when they reference GET and CBT. The misbehavior of a powerful group of investigators–enabled for decades by powerful players like the CDC–has rendered these terms toxic, not to mention uninterpretable. They cannot be massaged and refurbished in this context, nor should they be. Experts engaged in this field should understand that by now. So should the CDC.”
You know better.
Others from our community have written to you and have gotten the response that you “do not evaluate slides and presentations before they happen.” If that is true, that is simply unacceptable. With a condition as stigmatized as ME/CFS, as misunderstood as it can be by the medical profession, not approving slides that serve as education is at best negligent and at worst abusive to the community you aim to serve.
I am angry and disappointed.
I will tell you how to concretely make it better. Publicly announce that CBT and GET are not appropriate interventions for ME/CFS as we have repeatedly asked. You removed it from your website (thank you), now make it known to clinicians, to patients, to families, that they are harmful treatments. Look to NICE as an example.
Please do this for the ME/CFS community. At the CDC you are who our community has. Will you take action for us? Will you right the wrong?
With sincere hope that you will come through for us,[Your Name]