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.