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#MEAction: Keep PACE out of WebMD and HealthDay

Bob

Senior Member
Messages
16,455
Location
England (south coast)
KEEP PACE OUT OF WEBMD AND HEALTHDAY

WebMD-and-HealthDay-logos-330x179.jpg


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-fatigu...-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!
 

Comet

I'm Not Imaginary
Messages
693
Done and done. The 'Submit' button on the WebMd site was a little funky, but I kept clicking all around it and it finally submitted.
 

LiveAgain

Senior Member
Messages
103
Done, thank you for making it so easy with the links and sample letters. So agree about Mayo Clinic. They are the worst! and many doctors rely on them for information. I guess we'd need a different letter for them though and I'm too foggy to take it on but if anyone else can come up with a strategy, I would happily participate.
 
Messages
2,087
Done, thank you for making it so easy with the links and sample letters. So agree about Mayo Clinic. They are the worst! and many doctors rely on them for information. I guess we'd need a different letter for them though and I'm too foggy to take it on but if anyone else can come up with a strategy, I would happily participate.
We should probably suggest it on ME action website
 

Justin30

Senior Member
Messages
1,065
We should probably suggest it on ME action website

I believe this is a great idea that should be proposed.

I think our Major ME/CFS Organizations should request the NIH to make this contact as part of a movement to better understand what will actually help our disease.

Just a thought.
 

LiveAgain

Senior Member
Messages
103
I think our Major ME/CFS Organizations should request the NIH to make this contact as part of a movement to better understand what will actually help our disease.

That might be a good idea because in thinking about this, I was wondering how can we request Mayo revise their site when CDC still has sections dedicated to exercise and CBT.
 

Justin30

Senior Member
Messages
1,065
Done. On one hand I am happy to see an article on CFS on a mainsteam site but I don't like them using BS. Emails sent.

So you dont want us to send emails to the editors of these online media sources WebMD and HealthDay to try to have these articles on CBT and GET removed?
 
Messages
83
I sent the emails asking them to be removed. I am saying we just get so little publicity for this illness that it is a shame but this isn't the kind of publicity we want anyways.
 

Justin30

Senior Member
Messages
1,065
I sent the emails asking them to be removed. I am saying we just get so little publicity for this illness that it is a shame but this isn't the kind of publicity we want anyways.

I couldn't agree with you more....i put my own twist to my email...

In future I may just start putting my phone # on the email to see if they will call me directly to discuss the situation....and hopefully here first hand the suffering of someone with the disease.

It may be more effective this way.
 

LiveAgain

Senior Member
Messages
103
Oh, there we go.. they already have plans to work on the CDC site. Yay. Then Mayo and others will have no excuse to keep out of date, harmful information up.

"This new effort from the CDC is significant since the ME/CFS community has long been concerned that information on the CDC website is out of date, and in some cases, can be damaging to patients. The CDC site is a foundational source of information for many doctors who are not familiar with ME/CFS. By correcting information on the CDC site, we will help ensure that clinicians will receive accurate and appropriate information regarding both the seriousness of the disease and how it should be treated."

http://solvecfs.org/zaher-serves-cdc-workgroup
 

Justin30

Senior Member
Messages
1,065
Oh, there we go.. they already have plans to work on the CDC site. Yay. Then Mayo and others will have no excuse to keep out of date, harmful information up.

"This new effort from the CDC is significant since the ME/CFS community has long been concerned that information on the CDC website is out of date, and in some cases, can be damaging to patients. The CDC site is a foundational source of information for many doctors who are not familiar with ME/CFS. By correcting information on the CDC site, we will help ensure that clinicians will receive accurate and appropriate information regarding both the seriousness of the disease and how it should be treated."

http://solvecfs.org/zaher-serves-cdc-workgroup

This is amazing great news....amongst all the s**** that the community has experienced for years.....technology and innovation could bring treatments sooner.....I may have high hopes but at least they are there.....
 
Messages
2,087
This is amazing great news....amongst all the s**** that the community has experienced for years.....technology and innovation could bring treatments sooner.....I may have high hopes but at least they are there.....

We should capture it before it's gone to remind people what it looked like in 2016.