Complain about NIH's Claims on CBT and GET

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UPDATE: NIH has taken down the article from their website! Thanks everyone for participating! There is no longer a need to send emails to NIH and HealthDay.
Medline Plus, NIH’s web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that “cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief” of ME/CFS.
Medline Plus and Healthday are, respectively, “the world’s largest medical library” and “a leading producer and syndicator of evidence-based health news, used by thousands of media companies, hospitals, managed care organizations, publishers, non-profits and government agencies”. So it’s particularly disturbing to see them legitimizing CBT and GET. NIH’s publication of this article also adds the U.S. Government’s stamp of approval, which thereby calls into question NIH’s recent, more positive movements on ME/CFS.
Fortunately, if you want to complain to these two organizations, it’s super easy:
1. Open the website https://www.nlm.nih.gov/medlineplus/news/fullstory_155858.html
2. Go to “About” and click on “Contact Us”. Fill out the webform. (If doing this also opens a survey box, that’s another place to complain.)
3. Go to healthday.com.
4. Click on “How it Works” and scroll to the bottom of the page.
5. Click on “Get in touch with HealthDay editors now”. Fill out the webform.
Here’s a sample letter I wrote. Feel free to copy and paste at will.

“I strongly urge you to rescind your new article, “Chronic Fatigue Therapies Provide Some With Long-Term Relief,” about treatments for ME/CFS. The article is based on a flawed British study that recently has been completely discredited by journalist David Tuller and others. Numerous articles have been published detailing the overwhelming ethical and scientific flaws in the study’s research and methodologies. As a result, there has been an enormous backlash in the ME/CFS academic, research, medical provider, and patient communities. You are doing a huge disservice to your readership — and potential physical harm to patients — by publishing this article. I strongly urge you to rescind it immediately. Thank you.”

FYI, this is the reply I received from the U.S. National Library of Medicine (NLM), aka Medline Plus:

“In response to your message about a MedlinePlus news article on CFS, our news items come from an outside provider. NLM does not write the news stories; your editorial comments can be directed to the news service, HealthDay: http://www.healthday.com/.
 
Sincerely,
 
Cathy Sorge, MSLS
NIH Contractor Librarian
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
[email protected]
1-888-346-3656 (within US)
301-594-5983 (international)”

If you get a similar response, you are welcome to copy and paste my response to them:

“Thanks much for your message. I understand that your news items come from an outside provider and that NLM does not write the news stories itself. However, you still have a responsibility to verify the articles you publish and to make sure that you aren’t publishing false and harmful information, as is the case here. In this situation, you also now have a responsibility to remove the problem article and publish a correction. I look forward to your response on this matter.”

Thanks much for making your voice heard and making a difference!

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12 thoughts on “Complain about NIH's Claims on CBT and GET”

  1. Barbara Hartwig

    I have had CFS/FMS/ME for almost 30 years and have been recently diagnosed with diabetes. I also use a battery powered scooter which makes my life much easier when I leave my home. Without my scooter I would be nearly 100% home-bound.
    Recently I saw my doctor, Dr. T. I went to Dr. T. with two concerns; one was I needed new batteries for my scooter, and the other was the diabetes which, as a new patient to that disease, I had no prior experience with except for memories of my father who died from complications caused by diabetes.
    Instead of helping with either problem, Dr. T. prescribed CBT and GET as proposed by the PACE study. Dr. T. informed me that I should not even be using a scooter, as it would be detrimental to my progress with GET. My diabetes diagnosis was not discussed at all. Dr.T. did give me a blood test and medication but I received no other support for controlling my diabetes. Dr. T. seemed to think that CBT and GET would solve everything, and my treatment could proceed no further until I had at least tried the PACE method.
    If I had allowed this to happen I would have become trapped in my home (I live alone, so I would have had no one to help me), too exhausted to care for myself, with no means of monitoring my blood glucose levels, and many unanswered questions as to how I should proceed with the management of my diabetes. Instead, I have chosen to see a new doctor.

    1. Barbara, I am so sorry to hear about your experience. Thank goodness you were aware enough to switch doctors. Thank you for sharing your story and for your support on this effort.

  2. c o n g r a t u l a t i o n s ms sonya, the link you so kindly directed us to is now DEAD. dead as a DOORNAIL. nicely done.

    1. Ruddy, Thanks so much for sharing this great news! We were successful because people like you cared enough to make a difference, because alert ME/CFS advocates like Kathryn Stevens us all to this article, and because

      1. smart, visionary ME/CFS activists like Jen and Beth created this amazing forum to bring us all together. Congratulations, everyone!

  3. I clicked on the link for the news story and it appears to be removed from the NIH web site.
    Do you think our comments worked? Small victory?

  4. Ahimsa_pdx, I can’t imagine any other reason why it would’ve been taken down. Thank you for taking the time to and effort to support this action. Every victory is worth celebrating!

  5. Congratulations, everyone! NIH has now removed the invalid article, within DAYS after we began filing complaints! A BIG THANK YOU to everyone who emailed them, to Kathryn Stephens, Leela Play, Gina Giarrusso Bettor, and the other sharp advocates who alerted us all to this issue, and to #MEAction and others who spread the word.
    Now, we just need HealthDay to retract their article. It’s important, because Healthday is “a leading producer and syndicator of evidence-based health news, used by thousands of media companies, hospitals, managed care organizations, publishers, non-profits and government agencies”. If you have 30 seconds, please let Healthday know that their critically flawed article is doing a huge disservice to their readership — and potentially physically harming ME/CFS patients. Thank you!

  6. Annette Pittari

    Thanks so very much for alerting us to these postings. I’ve contacted both. The article can still be found by searching healthday.com and Chronic Fatigue. And, WebMd has the article. I tried using WebMd contact us form. It did not work. I posted the letter on their Facebook page.

  7. Annette Pittari

    Healthday sent me the following email:
    Please stop sending this in. Your letter has been forwarded to our editors. You actions are considerd close to harassment.
    David Rouatt, Partner and Managing Director
    HealthDay News Service / West Coast Office
    9 Abruzzini, Napa, CA 94558
    Mobile: 203-858-1941 / Office: 707-666-2645 / Skype: david.rouatt

    1. Thanks so much, Annette, for your support and for forwarding this message. We are making updates to this action to reflect this info from HealthDay and to ask #MEAction members not to send any more complaints. Again, thank you very much for your action on this and for making a difference!

    2. “You actions are considerd close to harassment.”
      Well, in that case I will certainly sent them a message to retract the story, since it is only “harassment” and not “vexatious”.

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