Email Doctor Unger about the Misinformation at CDC

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:

  1. 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).
  2. 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.

Most importantly, these recommendations are based on the severely flawed UK PACE trial. The CDC should not condone bad science in any form.   

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]
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4 thoughts on “Email Doctor Unger about the Misinformation at CDC”

  1. Theresa Kellgreen

    I have had CFS for 25 years and have tried GET numerous times. I always end up crashing and then it takes me 4 weeks to recover. During those 4 weeks I can barely function and can only do the bare necessities. I also think about suicide a lot more during those 4 weeks.

  2. I have personally discussed the push crash phenomemon with Dr Unger.
    We actually reached agreement that not all people with the base value immune dysfunction suffer from PEM.
    But we also agreed this is MORE reason to look for why that is.
    So I call upon Dr Unger to discuss it further and look for an explanation.

  3. Marie Josee Blier

    J’ai l’EM depuis 36 ans. J’ai passé par tous les essais d’exercices, concentration, cognitifs etc… Rien ne fonctionne. Même la maladie a empiré depuis 2012 et je suis en arrêt de travail. Je pouvais prendre des marches il y a quelques années, maintenant lorsque je marche 15 minutes, le lendemain j’ai beaucoup de difficulté à bouger. J’ai le POTS, vertiges, nausées, et beaucoup d’autres symptômes neurologiques. Je suis devenue maladie suite à une maladie infectieuse et à partir de ce moment, je ne pouvais plus dormir. Lorsque nous dormons, nos cellules se regénèrent, Vrai??? Si je vous empêchait de dormir pendant 3 jours, j’aimerais bien voir comment vous vous sentiriez, et je vous forcerait à faire des exercices. Je crois que vous comprendriez mieux ce que nous les EM vivont. Je pense que le sommeil est la base du problème de cette maladie et qui nous donnent d’autres problèmes de santé. Si les covid long ont presque les même symptômes que les EM, sauf cardiaques et pulmonaires, pourquoi on ne reconnait pas notre maladie?? J’écrirais encore et encore mais déjà mon cerveau ne veux plus rien savoir. Espérons que le mot exercice sortira de la maladie encéphalomyélite.

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