My letter to the CDC concerning Kaiser Permanente still recommending GET

My letter. The only edit (besides removal of personal info) is the KP web link I included in my email went stale, so I updated it below:

CDC response (emphasis mine):

As instructed by the CDC, I've written to California State Department of Health. When I get a reply, I'll post it. I used part of the New York State Department of Health letter from May 2017 as part of my argument.

 

The CMO for Swiss Re is still recommending GET, CBT and quoting the PACE trial, oh and mindfulness!

 

Good luck with it @Webdog! Thanks for sharing. Will be very interested to hear what happens next.

 

Is there anything new on this I've not seen? Or do you mean White?

 

Many people don't realize that Kaiser Permanente has almost 12 million members. That's roughly 1/3 the population of Canada. It's more than the entire population of Belgium, Portugal or Sweden.

 

Kaiser gets their material from Healthwise, which provides material to many groups. I dont think it will help but that might be another angle.

 

Wow, @Webdog, you are challenging KP!!! Way to go!!! Please keep us in the loop and let us know how we can help!

 

Yes, I am planning to contact Healthwise again soon. So far I’ve been unsuccessful with them.

 

This is new from last year and is from a current CMO (who was listed as one of the presenters on the recent ppt i linked to from swiss re about mental illnesses) not White. I don't think I can post the document I am referring to here as it is confidential but if you would like more info send me a message and we could discuss. I have only recently had access to this document but it was written mid 2017.

 

Just sent 2 messages to 2 different Healthwise contacts. Got a reply to one with a note that says "I have submitted your feedback to our team for review and will respond to you in the next few days with their evaluation.".

When I get the new Healthwise evaluation, I'll post it. In the meantime, for posterity, here's what Healthwise said in their evaluation last year:

 

I got a reply from Healthwise, and it's pretty much the same as last year. Basically, they've "deprioritized" GET and CBT, but not removed them. I suppose it's some consolation they have removed all references to PACE.

So effectively, Healthwise has rejected PACE but continues to recommend GET/CBT. One would have thought sinking PACE would be sufficient, but apparently not.

The fact that the CDC has removed GET and CBT didn't seem to make much difference to Healthwise. It's puzzling that Healthwise insists they are "closely following CDC and NICE guidelines", unless by "following" they mean "monitoring" and not literally "following".

Healthwise is also waiting for NICE to update their guidelines in October 2020, almost 3 years from now. I'd mark my calendar, but I don't have a 2020 calendar yet.

Healthwise "experts" remain convinced that GET/CBT is helpful for a subset of ME/CFS patients, and they are reluctant to completely remove a treatment that might benefit some.

"However, in working with ME/CFS patients, some experts continue to recommend CBT/GET where these interventions provide benefit to the patient. At this time, we will continue to include CBT/GET it in our ME/CFS content, as understanding these treatments may be helpful to some ME/CFS patients."​

I'd truly like to know who "some experts" are, and why their opinion carries more weight with Healthwise than the CDC.

 

It may take a Class Action Lawsuit, and some bad press, to get their attention and also Kaiser’s. Sounds like they won’t budge, because it’s almost an admission of guilt, if they remove the CBT/GET references.

Also, I would challenge them on the “these treatments may be helpful to some ME/CFS patients” statement. I would rebut with, “what about the ME/CFS patients who are harmed by your recommendations?”

 

I realise it's a bit of a nothing reply, but it still makes me jolly to see groups like this saying "and have removed all references to the PACE trial from our ME/CFS content".

In some ways, it's ridiculous that wider problems are still not being recognised, in other ways it's pretty impressive that this £5 million 'definitive' trial is now being widely recognised as an embarrassment.

 

Heathwise seems to be a US based company.

 

Which puzzles me why a US company (Boise, ID) is looking to NICE for guidance. One of many questions.

 

Since diseases are not restricted by borders and everyone with the same condition will have the same disease mechanism when crafting treatments you use the best data available. Unfortunately fraudulent data was published and is being protected but if a real ME/CFS treatment was discovered in the UK we would all use it no matter our location.
Conversely i would prefer to see international pressure to get the lies retracted (we can dream big)

 

But data is also available in the US, from the CDC and NIH. The vast majority of people in the US have never heard of NICE or the NHS, so it's extremely odd to prefer NICE as a source over the relevant national agencies which have far bigger and better reputations.

I suspect this is a case of an organization going where they need to, to find the support for their pre-existing conclusions.

 

As has also been pointed out elsewhere, if CBT and GET are removed as treatments, then an income stream is removed for health service providers, and those people who are contracted to deliver those treatments will either be sat around kicking their heels, or let go. So, while it shouldn't, that consideration probably plays it's part when decisions are made about this. And then there is the likely desire for doctors to be able to actually offer something more than "pace yourself, don't go over your limits".

 

I agree, cherry picking to support their irrational views