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!
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed