USA: California Kaiser Permanente ME/CFS Consultative Service

Hutan

Hutan

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Flicker_Beat said:
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.
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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.
 
Flicker_Beat said:
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.
Click to expand...

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.
 
I don't know if the consultative service still exists. I asked my doctor for a referral and got referred instead to a Long COVID Support Class. This is going to be 4 sessions via Zoom, an hour and a half each session.

If there's anything of value offered there, I will pass it along. If it leads to a referral to actual care, I'll pass that tip along as well. But I suspect the classes will just be a dull reiteration of the following information on Long COVID (almost identical to their info on ME) from Kaiser's healthcare topics resource:

How is it treated?​


There is no specific treatment for long COVID, but there are ways your doctor can help you. Your treatment will be based on the symptoms you have. Some symptoms may be treated with medicine. Or you may see a specialist. Your doctor also may recommend different treatments, like physical therapy, depending on your symptoms.


How can you care for yourself when you have long COVID?​


  • If you have fatigue, return to activities slowly. It takes time to get stronger. Pace yourself.
  • If you have shortness of breath, ask your doctor about breath training. Breath training can help you take deeper breaths and breathe easier. Methods include pursed-lip breathing and breathing with your diaphragm.
  • If you have headaches, ask your doctor if you can take an over-the-counter pain medicine, such as acetaminophen (Tylenol), ibuprofen (Advil, Motrin), or naproxen (Aleve). Be safe with medicines. Read and follow all instructions on the label.
  • If you have trouble thinking or concentrating, be patient with yourself. Use sticky notes and calendars to remember tasks and events.
  • To help control coughing, prop up your head with pillows.
  • If you have depression or anxiety, try to take good care of yourself. Regular activity, like walking, may help. Get plenty of sleep, and avoid drugs and alcohol. Consider talking to a counselor. Take medicine as prescribed.
  • If you have muscle or joint pain, ask your doctor if you can take over-the-counter pain medicine. Stretching may also ease muscle pain.
  • If you aren't getting better, talk to your doctor.
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Creek said:
I don't know if the consultative service still exists. I asked my doctor for a referral and got referred instead to a Long COVID Support Class. This is going to be 4 sessions via Zoom, an hour and a half each session.

If there's anything of value offered there, I will pass it along. If it leads to a referral to actual care, I'll pass that tip along as well. But I suspect the classes will just be a dull reiteration of the following information on Long COVID (almost identical to their info on ME) from Kaiser's healthcare topics resource:
Click to expand...
2 sessions in (out of 5 it turns out) the doctors leading the class have mentioned that there are LCC Providers (Long COVID Care Providers) to whom we can be referred by our primary care providers. They said it can take months from time of referral to actually being seen by an LCC provider.

I asked my primary care for the referral and she replied asking me for a list of my symptoms and their duration, so there is definitely some gate-keeping going on.

The class includes a lot of the usual we've all known for decades about pacing, but I'm pleased to find there are also updates on new research and experimental treatments. More details soon.
 
Gatekeeping abounds. The PC doc says no LCC provider for me. The docs involved with the LC class concur. Limited resources, so it's for LC patients only. But they say there is a CFS clinic through Kaiser South San Francisco, and that's virtual, and I should be able to get a referral to that.

I have asked my PC doc for that referral, since she seems to have been unaware of its existence. Onwards to victory or death or whatever.
 
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