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
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September 28, 2023
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We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise
16 thoughts on “We Succeeded in Removing NIH CBT and GET Advice”
Thank you for your initiative Sonya and for #MEAction providing the platform. It made it sooo easy.
Thank YOU, Penelope, for helping to make this happen!
Wow…
wow… is a wall crumbling down…?
I sure hope so!
Is this it. Have they put it back?: http://www.ncbi.nlm.nih.gov/pubmedhealth/behindtheheadlines/news/2015-10-28-exercise-and-therapy-useful-for-chronic-fatigue-syndrome/
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!
Hi, great news! I shared the link around and someone in IiME checked the NIH website and found the article still there! http://www.ncbi.nlm.nih.gov/pubmedhealth/behindtheheadlines/news/2015-10-28-exercise-and-therapy-useful-for-chronic-fatigue-syndrome/
Can someone check this out please?
Many thanks
Joan
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!
Thank you for your hard work MEAction and for informing us.
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.
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.
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.
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.
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
Hi Kym! The full video is available on Netflix. Here is the trailer: http://meaction.net/how-to-survive-a-plague/ (along with more info about the AIDS movement)
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