Discussion in 'Advocacy Projects and Campaigns' started by Webdog, Apr 11, 2018.
"change the behaviors that cause these chronic diseases"
Well, that's a presumptive mouthful right there.
I wonder about these figures they quote. I suspect that they all boil down to
1) obesity and the health related conditions (heart disease, type 2 diabetes etc)
2) some studies showing that we don’t get enough exercise
Now ...behaviour is a broad term ...if it’s down to a patients choice then does everyone need CBT?
Personally I think not ...this is just a bullshit excuse for treating patients with disdain.....clearer more trustworthy sources of advice would be better or free membership to slimming world or discounts off a gym or any other financial investment programmes might be a better way of helping patients with their “lifestyle problems” and probably more effective and cheaper to administer than some gravy train created by a load of BPS types.
@Webdog is this kind of thinking directed at other chronic conditions like lupus and MS. Or is it just ME/CFS? Sorry haven't the energy to read thru it all. Feels like we always get the crap!!
I think the eBrief mentions type 2 diabetes, heart disease, cancer, and COPD but implies that changing patient behavior improves patient satisfaction, clinical outcomes and healthcare costs for chronic conditions in general.
I see no differentiation between chronic illness that is linked to behavioral issues and chronic illness which isn't. It's a general behavioral approach for all chronic conditions. This one-size-fits-all approach concerns me, as behavioral interventions (GET) have caused ME/CFS patients so much harm.
Latest from Healthwise on their Fall 2018 update, which removes GET and CBT from the ME/CFS content:
If all goes according to plan, in about 6 weeks the Kaiser Permanente website will no longer recommend Graded Exercise Therapy and Cognitive Behavioral Therapy for ME/CFS.
Amazing work @Webdog
Dog with a bone
All dogs are good dogs but @Webdog is amazing!
Kaiser Permanente hasn't posted the new Nov 2018 Healthwise ME/CFS changes, but when they appear, it should be at this link:
Should be soon.
Edit: The GET and CBT info is on this subpage:
The links to the GET and CBT detail subpages have already been gone for a few months.
The Healthwise update on the Kaiser Permanente website is running late for some reason. I'm investigating as to why and trying to get a firm date, but it could just be the holidays.
Kaiser Permanente has interpreted my repeated requests for info about the delayed Healthwise update as a complaint. All good. I now have a tracking number and people looking into the issue. Healthwise has also promised to try to get an estimated release date for me as well.
The Healthwise Fall 2018 update still hasn't made it onto the Kaiser Permanente website. No one seems to know why it's taking so long. But it appears it's not just an ME/CFS issue... none of the Fall 2018 Healthwise content has appeared yet on the Kaiser Permanente website.
Healthwise is trying to get a response from Kaiser Permanente. Kaiser Permanente has promised to respond to my complaint by Dec 13.
On the plus side, Healthwise told me the changes to the section on support groups are included in the Fall 2018 content. This was originally scheduled for the Winter 2019 release. Healthwise should be removing warnings about joining certain types of ME/CFS support groups. - Edit: this didn't happen and I will ask why once other issues are resolved.
Graded Exercise Therapy and Cognitive Behavioral Therapy are no longer recommended in the Healthwise content for ME/CFS on the Kaiser Permanente website. Yay!
See for yourself:
That said, 3 issues remain that I'm working with Healthwise and Kaiser Permanente to resolve:
The "Current as of" date wasn't changed in the content and still shows June 3, 2018. So someone casually looking at the revision date would naturally think the content hasn't changed since June 3, which is not the case.
Some Kaiser Permanente regional websites continue to have old obsolete Healthwise content that has not been updated. For example:
The orphaned GET and CBT pages, which should have been removed, still exist on the website and show up in searches. Here are the links:
Latest on my 3 remaining issues:
Regarding the revision date, Healthwise says June 3, 2018 was the last time this content was medically reviewed, and that is why the revision review date didn't change although the content did.
The regional Kaiser Washington website apparently has to be manually updated, and Healthwise is now working with Kaiser to get them to switch over to automatic updates.
Healthwise says the orphaned GET and CBT pages were supposed to have been deleted and they are looking into this.
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