Keep PACE out of WebMD and HealthDay

Web MD, the largest online publisher of information on health and well-being, has released an article on ME/CFS based on the discredited PACE trials.

The source of this information is an identical story in HealthDay which asserts that “British researchers concluded that a form of talk therapy, called cognitive behavior therapy, and graded exercise therapy, are among the best treatments for chronic fatigue.”
The original article, Chronic Fatigue Therapies Provide Some With Long-Term Relief, appeared in HealthDay. In both pieces, WebMD and HealthDay attribute their findings to the PACE study and to co-author Michael Sharpe who is quoted extensively throughout. Additionally, HealthDay features a short video from March, 2016 promoting PACE therapies. At the video’s finish, the narrator issues a short disclaimer, stating that there is “no evidence that… [these therapies] work for CFS.”
Since there is no proof to support PACE claims, why are they being cited as evidence? Last year, with the help of the ME community, we successfully campaigned to remove the NIH’s MedLine Plus article and again, we need your help.
Fortunately, if you would like to lodge a complaint to these two organizations, it’s very easy.
For Web MD:

  1. Copy this URL to post later in the designated box: http://www.webmd.com/chronic-fatigue-syndrome/news/20151123/chronic-fatigue-therapies-provide-some-with-long-term-relief
  2. Continue to http://www.webmd.com/magazine/contact-us
  3. Click on “Letter to the Editor” and then fill out the form.

For HealthDay:

  1. Go to http://www.healthday.com
  2. Click on “Contact us.”
  3. Complete the form.

Here is a sample letter for WebMD. Copy and paste, or use as a template and alter it as you like:
I strongly request you rescind your new article, “Chronic Fatigue Therapies Provide Some With Relief.” This article is based on a flawed British study that has been discredited by journalist David Tuller and criticized by dozens of ME/CFS experts including Dr. Ron Davis of Stanford and Dr. David Kaufman at the Open Medicine Institute. In addition, numerous leading scientists around the world have urged The Lancet to retract this irresponsible and potentially harmful study. Because I know you value your readership and their well-being, I am confident that you will agree to promptly remove this article from your website. Thank you.
Here is a second letter for HealthDay that mentions both the article and the video:
I strongly request you rescind both your article “Chronic Fatigue Therapies Provide Some With Long-Term Relief” and your video from March 31, 2016 entitled, “An Update on Chronic Fatigue Syndrome.” Both the article and the video are based on the flawed PACE study that has been discredited by journalist David Tuller and criticized by dozens of ME/CFS experts including Dr. Ron Davis of Stanford and Dr. David Kaufman od the Open Medicine Institute. In addition, numerous leading scientists around the world have urged The Lancet to retract this irresponsible and potentially harmful study. Just last year, a similar article promoting PACE therapies appeared in HealthDay and it was withdrawn. Because I know you value your readership and their well-being, I am confident that you will agree to promptly remove this article from your website. Thank you.
 
Thank you for helping to correct erroneous information about ME!
 

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6 thoughts on “Keep PACE out of WebMD and HealthDay”

  1. I took action via twitter. Seen by more people so possibly good way to apply additional pressure?

  2. The widely used medical reference, Merck Manual, which Wikipedia calls “the world’s best-selling medical textbook” https://en.wikipedia.org/wiki/Merck_Manual_of_Diagnosis_and_Therapy, states the following in bold letters at the top of the Merck Manual, Professional Version, Chronic Fatigue Syndrome page https://www.merckmanuals.com/professional/special-subjects/chronic-fatigue-syndrome/chronic-fatigue-syndrome:
    “Chronic fatigue syndrome (CFS) is a syndrome of life-altering fatigue lasting > 6 mo that is unexplained and is accompanied by a number of associated symptoms. Management includes validating the patient’s disability, treating specific symptoms, cognitive behavioral therapy, and a graded exercise program.”
    Further down the page it says:
    “Cognitive-behavioral therapy and a graded exercise program are the only interventions proven helpful.”
    Under Key Points it says:
    “Validate patients’ symptoms, encourage them to accept and accommodate to their disabilities, and treat using cognitive-behavioral therapy and graded exercise.”
    Also under Key Points:
    “Diagnose CFS based on characteristic symptoms in patients with a normal examination and normal basic laboratory test results; CDC criteria may be helpful but are not strictly applied to individual patients.”
    From Merck Manual, Consumer Version, Chronic Fatigue Syndrome page https://www.merckmanuals.com/home/special-subjects/chronic-fatigue-syndrome/chronic-fatigue-syndrome:
    Under Causes:
    “Controversy exists as to whether there is a single cause or many causes and whether the cause is physical or mental, but either way the symptoms are very real to the person.”
    “People with chronic fatigue syndrome do not have a medically serious problem with their immune system.”
    “Chronic fatigue syndrome seems to run in families, possibly supporting a genetic component or an environmental trigger. Alternatively, members of the same family may respond similarly to physical and psychosocial stress and/or may have been exposed to the same substances.”
    Under Diagnosis:
    “The diagnosis of chronic fatigue syndrome is made only if no other cause, including side effects of drugs, is found to explain the fatigue and other symptoms.”
    While they list the Fukuda Criteria; but don’t call it that, they also state:
    “However, most doctors agree that these criteria should not be applied strictly to every person. The criteria are more useful as a common definition in research studies.”
    Under Treatment:
    “In most cases, symptoms of chronic fatigue syndrome lessen over time.”
    “The only treatments proven effective for chronic fatigue syndrome itself are cognitive-behavioral therapy and graded exercise.”
    “Cognitive-behavioral therapy is usually a brief course of psychotherapy aimed at redirecting hidden thoughts that could discourage people and prevent positive outlook and recovery.”
    Could someone please do something with this? Could someone also please make an MEpedia page? I’m not well enough. Thank you.

  3. The one comment you provided here for us to copy and share woth WebMD is more than 1,000 characters, which apparently is their limit. Can you give us one they will accept? I can’t think to figure out how to shorten it on my own.

  4. Here’s what the Web MD website says: “In order to maintain optimal performance on our contact us form, the following area contains a character limit of 1,000, which includes punctuation, spaces and text.” Unless I’m at the wrong page, but it does say “Letter to the Editor”.

  5. Thank you for all your good efforts. I have contacted both above with your letters and hope they are not edited out.
    Disgraceful behaviour by psychiatrists who are still fighting for their own reputations instead of their patients. No wonder real mental health is neglected and physical health problems such as ME/CFS are ignored.
    Disgusted!

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