Trial By Error: A Bit More on Kaiser Permanente

By David Tuller, DrPH

BerkeleyWellness.com has posted a version of my interview with Dr Steve Olson. He’s the Kaiser Permanente guy who is revamping the health system’s approach to ME/CFS, which is what they are now calling the disease. Dr Olson is planning to attend this week’s research gathering at the National Institutes of Health, so undoubtedly that will provide him with further insight into how Kaiser Permanente might better meet patients’ needs. (Virology Blog posted the original interview with Dr Olson here.)

The BerkeleyWellness.com post will help disseminate the information beyond the ranks of Virology Blog readers. This is actually a pretty big development; non-American readers might not realize that Kaiser Permanente is a huge player in the US health care marketplace. So perhaps other media organizations will notice.

I have heard some skepticism about Kaiser Permanente’s intentions, given its past performance. I understand these concerns and certainly find them reasonable. Effective follow-through will be essential if Dr Olson’s efforts are to lead to improvements in actual treatment and care. To some extent, it will be up to patients to make sure that happens.

The changes up till now have been driven to a significant degree by patient initiative, and in particular the efforts of San Francisco Kaiser Permanente member Jeff Schwartz. Now that the process has started, I hope it becomes easier for other dissatisfied Kaiser Permanente patients to make their views known and demand better–from their clinicians and from the system as a whole. Pressure from the inside can help the institution build on this foundation and stay abreast of medical developments.

A lot of questions remain unanswered. Has Kaiser Permanente thought about how it will address the needs of homebound patients? What about pediatric cases? Will doctors support patients in their efforts to get disability benefits and parents in their efforts to obtain accommodations at school? Is Kaiser Permanente developing protocols for managing the various symptoms? How much flexibility will physicians have in ordering tests and prescribing medications? How will these changes in norther California impact what is going on in Kaiser Permanente facilities elsewhere?

I hope to come back to Kaiser Permanente officials later this year and see how some of these questions are playing out. I also hope these changes put the Mayo Clinic, Cleveland Clinic and other major medical centers on notice that they need to take this stuff seriously. Certainly I hope patients at these august organizations bring the interviews with Dr Olson to their appointments and insist on their rights to appropriate care. I also hope to follow up with these medical systems myself and find out what, if anything, they are doing to catch up.

Let’s be clear: In the US, cognitive behavior therapy and graded exercise therapy are no longer considered the standards of care for this illness. They lost any real claim to that status when the US Centers for Disease Control and Prevention removed the recommendations from its website two years ago. The CDC’s refusal to admit that it got things wrong is a disgrace, as I have noted multiple times, but that doesn’t change the fact that the therapies are no longer recommended. (This is also not to mention that the CDC’s efforts on ME/CFS still remain far from what they should be.)

At least in the US, health officials and scientists now generally recognize that the CBT/GET treatment paradigm, a theoretical pretzel involving deconditioning and unhelpful beliefs and vicious downward spirals, cannot be described as “evidence-based.” In other words, these experts have rejected this body of fatally flawed research, which is still hailed as quality science by the self-deluded pooh-bahs of the British academic and medical worlds. Major American medical centers have no excuse for promoting officially discarded treatments. And they have no excuse for continuing to dismiss or ignore patients’ requests for care based on science–and not based on crap like the PACE trial and other research from the CBT/GET ideological brigades.

{ 9 comments… add one }
  • Erik Johnson 1 April 2019, 12:35 am

    “The CDC’s refusal to admit that it got things wrong is a disgrace, as I have noted multiple times, but that doesn’t change the fact that the therapies are no longer recommended.”
    ——————————-
    Same tactics the CDC used for “mold illness”
    It’s based on “tobacco science”
    Publish falsely, retract quietly.
    The influence remains while they have gotten themselves off the hook

  • Alicia Butcher Ehrhardt 1 April 2019, 2:54 am

    I’m trying to get up the energy to send my doctor at U.C. Davis Medical Center the link – and ask that he read them.

    It is so hard to keep hoping. When I see something like your original interview, and then read the comments (which mention that KP has not been good about sticking to plans in the past), the sense of deja vu is heavy. Why get excited about one more promise.

    I think I’ll wait to see the happy stories from KP patients in my area celebrating actually getting help – then I’ll try to goose my medical support people (please note implied disbelief) into providing me with more help than telling me all my test results are fine.

    I’d love for that to happen.

  • Lady Shambles 1 April 2019, 5:40 am

    If only we could achieve a worldwide consensus to use ICC both clinically and for research. At least then we’d have a stab at producing fairly accurate patient cohorts instead of the mongrel herd of horses and zebras we presently have. It’s all there to use..they don’t have to ‘do’ very much at all. Maybe KP could be encouraged?

  • Wendy Boutilier 1 April 2019, 6:28 am

    The CDC needs to fess up about the mess they created when they hatched Chronic Fatigue Syndrome. CFS and ME are not interchangeable. ME-ICC is a completely different disease than CFS. The problem is that broad criteria such as the Fukuda or SEID are so broad that everybody can meet them except for those with ME-ICC. This creates a larger than life prevalence requiring more funding to pay big salaries and PR Marketing. How much of the taxpayer dollar is being used for the same scientists to meet together several times a year in various countries while practicing medical negligence to continue to mistreat, misrepresent and misinform patients that their Myalgic Encephalomyelitis is the same thing as CFS. This makes them no different than the Psychiatric Collaborative. Pulling old ME research studies from the Internet, dusting it off and tweaking it as CFS/ME/SEID then republish as new material is lying and it’s dangerous. The CDC and the NIH has a lot to answer for but we want the truth please. We’re not all easily duped.

  • Brooke 1 April 2019, 8:59 am

    This was not just done because of internal collaboration with patients. It was an essential part but not the whole story. There are a lot of patients working on a class action against Kaiser. No doubt they started making movements because of fear of lawsuits and push from the outside as well. Those advocates were a critical part, just as much as the patients working internally.

    Also, Kaiser patients who are discouraged from applying for care outside the system should still follow through. There are 50,000 Kaiser ME/CFS patients and right now in the interviews, they are saying they only got 8 requests for outside care. That’s not because there are only 8 patients, it’s because there are only 8 patients who haven’t been beaten down and discouraged, have the energy to fight, have the knowledge about other ME/CFS doctors, and who have the money to pay a doctor on the outside.

  • David Tuller 1 April 2019, 10:16 am

    Hi, Brooke–do you know of anything specific along those lines going on? If so, I’d be interested to know. I’ve heard people generally talking about wanting to pursue class actions but nothing specific, and certainly not about Kaiser Permanente.–David

  • Anton Mayer 1 April 2019, 1:24 pm

    Dr Olson,

    If you are reading this, I hope you will continue to share your thoughts and observations with us patients.

  • Anonymous 1 April 2019, 11:29 pm

    In OR/WA, Kaiser had a visiting physician program, and they are now shuttering it due to higher-than-expected demand.
    There’s no other visiting physician program in my county, Everyone I ask thinks someone else is, or should be, doing this, but no one wants to do it themselves.

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