Healthwise to "retire the GET/CBT topics" from medical content

Webdog said:
If you are on Twitter, consider thanking @Healthwise for removing Graded Exercise Therapy and Cognitive Behavioral Therapy from their ME/CFS content (and the Kaiser Permanente website).

Alternatively, you can contact Healthwise on this webpage:
https://www.healthwise.org/contact.aspx
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Before thanking anyone else I'd like to thank a certain very determined dog here, and very loudly, too: THANK YOU @Webdog !!!
 
Webdog said:
One of my personal advocacy projects for the past 16 months has been to try to have Healthwise remove the GET and CBT modules from their ME/CFS content.

Healthwise provides medical content for many major healthcare corporations in the United States, including Kaiser Permanente with its 13 million members.

Over the past 16 months, whenever a paper, letter, or Tuller blog post about GET/CBT appeared, I would send it off to Healthwise, asking them to consider removing GET/CBT from their ME/CFS content.

Last year, after pressure by myself and others, Healthwise downgraded GET/CBT as treatments for ME/CFS. But these modules were still included in their ME/CFS content.

Today, I got a Twitter direct message from Healthwise, soon after sending them @FrankTwisk 's excellent letter to The Lancet. From the message, the recent clinician summit in Salt Lake City influenced them significantly.

Healthwise will be modifying their ME/CFS content fall of 2018, including retiring the GET/CBT topics from the ME/CFS section!

It will likely take a few more months for major healthcare organizations to refresh their websites with the updated Healthwise content.

Below is the Twitter direct message from my email inbox.

View attachment 2591
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Great work, @Webdog Thanks very much.
 
This is a big win for Kaiser Permanente members with ME/CFS. But Kaiser Permanente physicians aren't bound by what the website (Healthwise) says, and can still prescribe as they see fit. And, as many have pointed out, although GET/CBT are gone, the website ME/CFS content still needs more changes.

However, much is happening behind the scenes to ensure all Kaiser Permenante physicians will provide better ME/CFS diagnosis and care in the near future. And the Winter 2019 Healthwise update should bring more changes to the Kaiser Permanente website.

Kaiser Permanente has roughly 13 million members.

A sincere thank you to @Keebird, @Medfeb, and "@Learner1 from PR" for their help and contributions.
 
Great work Webdog!

From Solve's latest webinar they hope to work at educating healthcare providers and getting them involved in their registry and biobank and have apparently already started talking to Kaiser.
Slide showing their plans
Screen Shot 2018-12-08 at 18.22.00.png
Skip to about 38 mins in to listen to that bit here.
Code: 
https://www.facebook.com/SolveMECFSInitiative/videos/2194607644084672/
 
Andy said:
Great work Webdog!

From Solve's latest webinar they hope to work at educating healthcare providers and getting them involved in their registry and biobank and have apparently already started talking to Kaiser.
Slide showing their plans
View attachment 5067
Skip to about 38 mins in to listen to that bit here.
Code: 
https://www.facebook.com/SolveMECFSInitiative/videos/2194607644084672/
Click to expand...
Good to hear. Getting Kaiser Permanente's Division of Research interested in ME/CFS has been a long term goal for me. Kaiser has the 2nd largest biobank in the US, as well as the ability to do large scale longitudinal studies in diseases.

In past contacts with KP's Division of Research, they weren't interested in studying ME/CFS, but were surprised to hear about its severity and prevalence.

Edit: I've been thinking about the feasibility of an LDN study for KP's Division of Research.
 
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I am really excited that Solve is talking with Kaiser Permanente. I truly think this is an approach outside of government that could speed up certain areas of research given the NIH is dragging their feet.

Patients just want better clinical care and more effective treatments providing better quality of life and better health outcomes. Kaiser Permanente wants this too (don't laugh!). Treating ME/CFS as an actual serious biomedical illness is a major cultural shift in medicine. I've been reassured by a doctor I trust that such paradigm changes always take time.

Would also like to see Solve working with the new Kaiser Permanente School of Medicine. They probably already are. :)
 
Webdog said:
However, much is happening behind the scenes to ensure all Kaiser Permenante physicians will provide better ME/CFS diagnosis and care in the near future.
Click to expand...
As a member of KP in Washington state, I'm curious to know what is "happening behind the scenes" if you are able to share. If you can't say publicly, can you send me a PM? Thanks.
 
The orphaned GET/CBT pages have been scheduled to be removed in a special January 2019 Healthwise content update (seems to be an interim update between the usual fall and winter updates). They remain on the website only because of a technical error with the content management system.

Note that these pages only show up in searches and are not linked from the current ME/CFS content. Any Kaiser Permanente member can file a complaint with Member Services requesting that the GET/CBT pages are removed as quickly as possible. I don't think it will speed up the process, but it can't hurt and you will get some kind of response with 30 days.
Edit: I've been promised an estimated date soon. Jan 8.
 
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The orphaned GET/CBT pages mistakenly left on the Kaiser Permanente website are scheduled to be deleted tomorrow (Tuesday, Jan 8). That's according to Healthwise, as Kaiser Permanente won't say anything for 30 days.

As noted in previous post, the URLs are:
Also, I've had it pointed out to me there is another problematic old page that should have been deleted. I've requested it be included in the site maintenance tomorrow, but never got a reply. Here's the link to that page:
Hopefully after tomorrow, none of these links will work.

Edit: For posterity, I just archived all 3 of these URLs to the Wayback Machine.
 
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I pinged Healthwise, and the "product release" update is scheduled for tonight (Jan 8). The pages have been hard coded into the update to ensure they get removed. So everything looks on track.

Still no word about the 3rd link, however. But it's not as important as it's much less visible in searches. If this page does still exist tomorrow, I'll remind Healthwise so they can delete it in the following update.
 
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