USA: California Kaiser Permanente ME/CFS Consultative Service

[Hutan]

WebDog had extensive contact with Dr. Steve Olson. Dr. Steve Olson created an "ME/CFS Consultative Service" and also caused some administrative changes. He then retired in about 2019-2020. He has an interview with David Tuller where he talks a little bit about what he accomplished.

Currently, this Consultative Service is 5 or 6 part-time doctors. It only serves people in CA. Wait times are too long, 3 months for an initial appointment. It is now run by Dr. James C Yang. I would say that the care that patients have received at the Consultative Service is kind of decent. They definitely understand the basics of pacing and are willing to prescribe basic medications. They won't do anything super out-there or expensive though.

But most CA Kaiser ME/CFS patients don't know this Consultative Service exists. Their doctors don't know it exists and don't refer their patients there. And the service is obviously not big enough to see the amount of patients they need to. I've talked to a lot of ME/CFS Kaiser patients and they usually describe horrible care, rheumatologists who tell them it's basically the same as fibromyalgia, being denied a diagnosis, being referred to psych, being encouraged to try physical therapy, no recognition of dysautonomia or MCAS or other co-occurring conditions, etc.

 

[Flicker_Beat]

Oh, I didn't think to create a thread/listing like this, but yes, I suppose it makes sense to document this more.

This is the only recent Kaiser page I know of that proves its existence:
https://mydoctor.kaiserpermanente.org/ncal/providers/jamesyang

"In addition to working with my patients, I serve as the Lead Physician for the Regional ME/CFS Consultative Service" is the only mention of it.

It's available to anyone that has Kaiser and lives in CA. It operates primarily (exclusively maybe?) by telehealth. NorCal patients can get referred here fairly normally I have been told. I'm a SoCal patient and had to file a grievance to get referred here, and I was told others from SoCal also filed grievances. I haven't heard of anyone out of state being able to go here.

There's more information about the specifics of the clinic on reddit or facebook. You can find other patient's stories if you hunt around a bit.

 

[Hutan]

Thanks very much for this, @Flicker_Beat.

 

[Webdog]

Oh, I didn't think to create a thread/listing like this, but yes, I suppose it makes sense to document this more.

This is the only recent Kaiser page I know of that proves its existence:
https://mydoctor.kaiserpermanente.org/ncal/providers/jamesyang

"In addition to working with my patients, I serve as the Lead Physician for the Regional ME/CFS Consultative Service" is the only mention of it.

It's available to anyone that has Kaiser and lives in CA. It operates primarily (exclusively maybe?) by telehealth. NorCal patients can get referred here fairly normally I have been told. I'm a SoCal patient and had to file a grievance to get referred here, and I was told others from SoCal also filed grievances. I haven't heard of anyone out of state being able to go here.

There's more information about the specifics of the clinic on reddit or facebook. You can find other patient's stories if you hunt around a bit.

Unfortunately, my experience with Dr. Yang was different. After Dr. Zambrano quit (she was too good to work at Kaiser), I got assigned to Yang.

Yang never once talked about PEM or pacing. He pushed the biopsychosocial "central sensitization model", and prescribed treatments for fibro pain and migraines, though I have no fibro pain or migraines! ME/CFS is recast as an exaggerated pain response, regardless of symptoms. Wild stuff.

Yang also prescribed a high meat (AIP) diet. I'm vegetarian. Also was given a 40 page psych evaluation + further psych testing that I was physically unable to complete and induced PEM. I was drug tested for the first time in my life (never used drugs).

I asked for another ME/CFS doctor, got Dr. Chyu, and he's exactly the same. Accept the "central sensitization model" or you're labeled as refusing care. When asked to provide evidence for the biopsychosocial "central sensitization model", Chyu points to pain meds that are often recommended in ME/CFS. Nonsensical response.

Kaiser ME/CFS docs have abandoned CDC guidelines (except for diagnostic criteria and POTS testing). However, physical therapy dept will help with pacing and activity management, if you can get a referral.

Beyond disappointed. A decade ago, Kaiser doctors could claim ME/CFS ignorance, but at this stage it's deliberate.

Good luck to you all. I'm all out of fight.