We Succeeded in Removing NIH CBT and GET Advice

NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the HealthDay article is still up on the original site, HealthDay management has also forwarded the grievances to its editors for review.
There was such a high participation rate with this action that HealthDay even complained about borderline “harassment”. (So please, don’t send them any more messages!) This success is great progress against the PACE study and also one additional sign of NIH movement in the right direction.
A big thank you on this action goes to every one of you who emailed NIH and HealthDay; to Kathryn Stephens, Leela Play, Gina Giarrusso Bettor, and the other sharp advocates who alerted us to the issue; and to #MEAction and others who spread the word.
A special thanks to Jen and Beth for creating #MEAction, which is multiplying the work of ME activists and accomplishing real results like this. I’ll try to post more when I hear about HealthDay’s determination on this, but either way it’s good to know that this article no longer receives the rubber stamp of the U.S. Government!
Sonya Irey

Facebook
Twitter
WhatsApp
Email

16 thoughts on “We Succeeded in Removing NIH CBT and GET Advice”

  1. Penelope Del Fante

    Thank you for your initiative Sonya and for #MEAction providing the platform. It made it sooo easy.

    1. Hi Russell, Thanks for your comment! The article that was taken down was the Medline/ National Library of Medicine (NLM) article, “Chronic Fatigue Therapies Provide Some With Long-Term Relief.” The message we received from NLM was, “After reviewing the recent HealthDay story on Chronic Fatigue Therapies, we removed the story since it did not provide a balanced view on the topic.” Per your point, we are celebrating this accomplishment, but there is still much more to be done!

    1. Hi Joan, Thanks for your comment! The article that was taken down was the Medline/ National Library of Medicine (NLM) article, “Chronic Fatigue Therapies Provide Some With Long-Term Relief.” The message we received from NLM was, “After reviewing the recent HealthDay story on Chronic Fatigue Therapies, we removed the story since it did not provide a balanced view on the topic.” Per your point, we are celebrating this accomplishment, but there is still much more to be done!

  2. A couple of people have pointed out that NIH still has another online article promoting CBT and GET as treatments for ME/CFS. If anyone wants to write something up and send it to #MEAction for publication, like I did with “Chronic Fatigue Therapies Provide Some With Long-Term Relief,” you are more than welcome to use my article as an example. The lovely thing about #MEAction is that anyone who sees something wrong can organize to protest it. I also like the fact that we patients don’t have to agree with everything #MEAction does in order to use this service, which seems to work pretty well. Unfortunately, since I’m also a patient, I need some recovery time right now and will have to pass this baton to someone else.

  3. Regarding the HealthDay Today article, I noticed it has been picked up by WebMD and something with Psychiatry in the title and perhaps elsewhere. Do each of these periodicals need to be contacted? It was very frustrating to see this picked up on sites that had no comments section.

    1. Hi Esther- We hope HealthDay will take down the original article, but for now it would be great if you can contact each of the sites that picked up the HealthDay article. I agree that it is frustrating that we can’t put comments on many of the sites sharing misinformation.

  4. Thank you MEAction, and everyone else who made this happen.
    Regarding the complaint from HealthyDay that they are being “harassed”: ME patients are the ones being harassed, not the other way round.
    Keep those actions coming!
    To coin a phrase from the AIDS Act UP campaign: ME knows no boundaries!
    I’m just watching: “How to Survive a Plague” about the AIDS Movement. There are definitely some similarities with how the health care system has acted with the AIDS epidemic, and how the same system has acted, with ME.

    1. Nice work to get a change in NIH!
      On another note: Where is the “how to survive a plague” video posted? I’d like to see it.
      Thanks!
      Kym

Comments are closed.

Latest News

Text across top of image reads: "Experts in infection associated chronic illness" with "WE WANT YOU!" bolded below it. Hand with finger pointed out at viewer. "Apply now" buttons to the left and right with mouse cursor clicking on them.

Infection-associated chronic disease experts needed at ARPA-H

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems. As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top