USA: California Kaiser Permanente ME/CFS Consultative Service
- Thread starter Hutan
- Start date
Flicker_Beat
New Member
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.
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.
Thanks very much for this, @Flicker_Beat.
Webdog
Senior Member (Voting Rights)
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.
Creek
Established Member (Voting Rights)
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:
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:
Creek
Established Member (Voting Rights)
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.
Creek
Established Member (Voting Rights)
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.
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.
Creek
Established Member (Voting Rights)
Update: It seems that referrals to ME/cfs people do continue to exist in Kaiser Northern California, but it's a slow process.
I attended a Long COVID online group class. Slides presented info on pacing and self-care that will be familiar to ME folks. Some newer pharmaceutical interventions under research were mentioned, and even some off-label Rx's that could be covered by Kaiser. If people want, I can expand on this.
On requesting a referral to the "CFS" clinic, I had several back-and-forth messages with my primary care team, where they said they didn't know about and couldn't find that referral information. After lots of that, the doctor involved in the online class told me to have my PC contact her and she'd explain where to make the ME/cfs referral. Soon after I passed that along to my PC team, I got a message:
Thank you for your patience as we manage a high volume of referrals. We have received your referral from Dr. [Name 1] and fully recognize the importance of timely care. We understand the frustration that can come with waiting for an appointment, especially when dealing with health issues. Please be assured that we are doing our best to accommodate all our patients as swiftly and effectively as possible.
We are actively working on expanding our capacity and streamlining our referral processes to better serve you and others in the community. We anticipate reaching out to schedule your appointment in the coming months and truly appreciate your understanding and patience during this period.
[Name 2], MSN RN
ME/CFS Case Manager
So it exists, but indeed it will be a long wait, and even to get on the wait list takes intense digging. It's like there's so many levels of secrecy, they were careful not to provide me with contact information for the clinic that I might pass along to other patients. And that message quoted above allows no replies so I don't know if I could contact "[Name 2], MSN RN" if I wanted to. But if you do want to try your luck, message me and I'll provide that name on the condition you never reveal your source. Now eat this posting. LOL
Pathetic note: I feel elation just knowing that someone, somewhere ,has the title, "ME/CFS Case Manager." *sniffle*
I attended a Long COVID online group class. Slides presented info on pacing and self-care that will be familiar to ME folks. Some newer pharmaceutical interventions under research were mentioned, and even some off-label Rx's that could be covered by Kaiser. If people want, I can expand on this.
On requesting a referral to the "CFS" clinic, I had several back-and-forth messages with my primary care team, where they said they didn't know about and couldn't find that referral information. After lots of that, the doctor involved in the online class told me to have my PC contact her and she'd explain where to make the ME/cfs referral. Soon after I passed that along to my PC team, I got a message:
Thank you for your patience as we manage a high volume of referrals. We have received your referral from Dr. [Name 1] and fully recognize the importance of timely care. We understand the frustration that can come with waiting for an appointment, especially when dealing with health issues. Please be assured that we are doing our best to accommodate all our patients as swiftly and effectively as possible.
We are actively working on expanding our capacity and streamlining our referral processes to better serve you and others in the community. We anticipate reaching out to schedule your appointment in the coming months and truly appreciate your understanding and patience during this period.
[Name 2], MSN RN
ME/CFS Case Manager
So it exists, but indeed it will be a long wait, and even to get on the wait list takes intense digging. It's like there's so many levels of secrecy, they were careful not to provide me with contact information for the clinic that I might pass along to other patients. And that message quoted above allows no replies so I don't know if I could contact "[Name 2], MSN RN" if I wanted to. But if you do want to try your luck, message me and I'll provide that name on the condition you never reveal your source. Now eat this posting. LOL
Pathetic note: I feel elation just knowing that someone, somewhere ,has the title, "ME/CFS Case Manager." *sniffle*
Thank you. Please do.
Creek
Established Member (Voting Rights)
Treatments recommended by Kaiser for Long COVID in their online class
The recommendations were divided into categories. Some will appear under multiple headings. I'm not listing here the many lifestyle interventions from pacing to anti-inflammatory diet.
Mast Cell Deactivation
∑ Antihistamines: Zyrtec (Cetirizine), Claritin
(Loratadine), Allegra (Fexofenadine), Benadryl
(Diphenhydramine), Pepcid (Famotidine)
∑ Mast Cell Stabilizers: Cromolyn nose spray
(oral solution may help with gut symptoms)
o Ketotifen 1mg (not available in US). Combination
Antihistamine and Mast Cell Stabilizer
∑ Anti-inflammatory Medicines: Aspirin,
Ibuprofen
∑ Low Dose Naltrexone (reduces inflammation in
the brain and nervous system)
Vagus Nerve Function
There isn't a single "medicine" designed to specifically
treat vagus nerve dysfunction
– Propranolol (betablocker )
o Decreases activity of the vagus nerve to slow heart rate, relax
bronchial tubes, and reduce gut motility.
– Pyridostigmine ( Mestinon)
o counteracts overactive sympathetic "fight or flight" response.
o low doses can help with POTS/Orthostatic Intolerance
– SSRI (helps with brain to gut signaling)
o Fluvoxamine (Luvox)
o Fluoxetine (Prozac)
Vagus Nerve Stimulation
ß Implantable Device (surgically
implanted)
ß Non-invasive Devices (nVNS,
applied to the skin)
ß Can have positive impact but can
also have negative effects
ß These devices are not a “cure”
ß Not FDA approved for treating Long
COVID conditions
Introduced in its own category:
Low Dose Naltrexone
- reduces inflammation in CNS
-promotes release of endorphins
Brain Fog Management
Stimulating Medicines
o Guanfacine 1mg & N-acetyl cysteine (NAC) 600mg
o Modafinil (Provigil)
o Amphetamine/Dextroamphetamine (Adderall)
o Methylphenidate (Ritalin, Concerta)
CNS Medicines (SNRI/SSRI)
o Fluoxetine (Prozac)
o Fluvoxamine (Luvox)
o Bupropion (Wellbutrin)
o Duloxetine (Cymbalta)
o Sertraline (Zoloft)
o Escitalopram (Lexapro)
Others:
o Low Dose Naltrexone (treats neuro-inflammation)
o Amantadine (anti-viral medicine)
Orthostatic Intolerance and POTS
ß Beta-blockers (propranolol, metoprolol): reduces Vagus nerve activity and can
directly control heart rate and lower blood pressure
ß Ivabradine: controls heart rate
ß Midodrine: constricts blood vessels to help raise blood pressure (numbness/tingling in the limbs
is common)
ß Fludrocortisone (Florinef): hormone that helps the body hold onto water to raise blood
pressure (may increase blood pressure while laying dow n and lower blood potassium levels)
ß Pyridostigmine (Mestinon): increases the amount of the neurotransmitter acetylcholine ( ACh)
in the body and this can restore balance to the autonomic nervous system
ß SSRI (Fluvoxamine "Luvox", Fluoxetine "Prozac"): helps with brain to gut signaling and can
reduce Vagus nerve stimulation by lowering stress and anxiety
ß Clonidine: works to reduce sympathetic nerve impulses and reduce fight/flight
Also mentioned but not included in the slides and workbook as it's only promising research for now: recitinative (jack inhibitor or stacks inhibitor)
The recommendations were divided into categories. Some will appear under multiple headings. I'm not listing here the many lifestyle interventions from pacing to anti-inflammatory diet.
Mast Cell Deactivation
∑ Antihistamines: Zyrtec (Cetirizine), Claritin
(Loratadine), Allegra (Fexofenadine), Benadryl
(Diphenhydramine), Pepcid (Famotidine)
∑ Mast Cell Stabilizers: Cromolyn nose spray
(oral solution may help with gut symptoms)
o Ketotifen 1mg (not available in US). Combination
Antihistamine and Mast Cell Stabilizer
∑ Anti-inflammatory Medicines: Aspirin,
Ibuprofen
∑ Low Dose Naltrexone (reduces inflammation in
the brain and nervous system)
Vagus Nerve Function
There isn't a single "medicine" designed to specifically
treat vagus nerve dysfunction
– Propranolol (betablocker )
o Decreases activity of the vagus nerve to slow heart rate, relax
bronchial tubes, and reduce gut motility.
– Pyridostigmine ( Mestinon)
o counteracts overactive sympathetic "fight or flight" response.
o low doses can help with POTS/Orthostatic Intolerance
– SSRI (helps with brain to gut signaling)
o Fluvoxamine (Luvox)
o Fluoxetine (Prozac)
Vagus Nerve Stimulation
ß Implantable Device (surgically
implanted)
ß Non-invasive Devices (nVNS,
applied to the skin)
ß Can have positive impact but can
also have negative effects
ß These devices are not a “cure”
ß Not FDA approved for treating Long
COVID conditions
Introduced in its own category:
Low Dose Naltrexone
- reduces inflammation in CNS
-promotes release of endorphins
Brain Fog Management
Stimulating Medicines
o Guanfacine 1mg & N-acetyl cysteine (NAC) 600mg
o Modafinil (Provigil)
o Amphetamine/Dextroamphetamine (Adderall)
o Methylphenidate (Ritalin, Concerta)
CNS Medicines (SNRI/SSRI)
o Fluoxetine (Prozac)
o Fluvoxamine (Luvox)
o Bupropion (Wellbutrin)
o Duloxetine (Cymbalta)
o Sertraline (Zoloft)
o Escitalopram (Lexapro)
Others:
o Low Dose Naltrexone (treats neuro-inflammation)
o Amantadine (anti-viral medicine)
Orthostatic Intolerance and POTS
ß Beta-blockers (propranolol, metoprolol): reduces Vagus nerve activity and can
directly control heart rate and lower blood pressure
ß Ivabradine: controls heart rate
ß Midodrine: constricts blood vessels to help raise blood pressure (numbness/tingling in the limbs
is common)
ß Fludrocortisone (Florinef): hormone that helps the body hold onto water to raise blood
pressure (may increase blood pressure while laying dow n and lower blood potassium levels)
ß Pyridostigmine (Mestinon): increases the amount of the neurotransmitter acetylcholine ( ACh)
in the body and this can restore balance to the autonomic nervous system
ß SSRI (Fluvoxamine "Luvox", Fluoxetine "Prozac"): helps with brain to gut signaling and can
reduce Vagus nerve stimulation by lowering stress and anxiety
ß Clonidine: works to reduce sympathetic nerve impulses and reduce fight/flight
Also mentioned but not included in the slides and workbook as it's only promising research for now: recitinative (jack inhibitor or stacks inhibitor)
Creek
Established Member (Voting Rights)
Labs have been ordered to go with my referral. Anyone with medical wisdom want to scan the long list of tests and see what they're looking for? I assume eliminating non-ME diagnoses.
The tests ordered are:
CBC & Differential
Sodium
Potassium
Chloride
Bicarbonate
Blood Urea Nitrogen
Urine Creatinine
Calcium, Serum
Phosphate
Magneseum
Hemoglobin A1C
Aspartate Aminotransferase (AST)
Alanine Aminotransferase (ALT)
Alkaline Phosphatase
Gamma Glutamyltransferase
Total & Direct Bilirubin
C-Reactive Protein
ANA and Nuclear Antibodies Panel
Erythrocyte Sedimentation Rate
Albumin
Thyroid Stimulating Hormone (TSH)
Free Thyroxine (T4)
Iron and Total Iron Binding Capacity
Ferritin
Creatine Kinase
Vitamin D
Vitamin B12 (Cobalamine)
Vitamin B9 (Folic Acid)
Testosterone
AM Cortisol
I'm going to have to drink so much water before they take all my precious bodily fluids away to test!
The tests ordered are:
CBC & Differential
Sodium
Potassium
Chloride
Bicarbonate
Blood Urea Nitrogen
Urine Creatinine
Calcium, Serum
Phosphate
Magneseum
Hemoglobin A1C
Aspartate Aminotransferase (AST)
Alanine Aminotransferase (ALT)
Alkaline Phosphatase
Gamma Glutamyltransferase
Total & Direct Bilirubin
C-Reactive Protein
ANA and Nuclear Antibodies Panel
Erythrocyte Sedimentation Rate
Albumin
Thyroid Stimulating Hormone (TSH)
Free Thyroxine (T4)
Iron and Total Iron Binding Capacity
Ferritin
Creatine Kinase
Vitamin D
Vitamin B12 (Cobalamine)
Vitamin B9 (Folic Acid)
Testosterone
AM Cortisol
I'm going to have to drink so much water before they take all my precious bodily fluids away to test!
LittleVik
New Member
Hi y'all - Creek do you know how to contact the SF Kaiser ME/CFS specialists group to get on the waiting list? I am in San Jose (about 40 miles south of SF) I want to pass this on to my GP so she can refer me. Pretty please? I would like to have someone track all of this just so it "goes down in my permenent record" & help if they can.
The psych gave me Wellbutrin for the foggy brain. It helps a bit but on bad days I should NOT be driving. Thank God I work from home.
My Doc is amazing & I love her AND she is not an expert. She referred me to a Psychiatrist (who I also love.. thank God) and between the 2 of them & a LOT of testing the consensus was CFS or Long Covid... I have never had Covid, sooo... It has been years & multiple doctors just trying to get someone to not say "as women age" (REALLY!?! and from female doctors!! For shame!) or "the tests are normal - what do you think is wrong?" (If I knew that I wouldn't be here!)
It is getting harder & harder to work & the PEM is awful. I could not figure out why I would have a super productive day, go to bed feeling happy & with more plans for the next day & get stopped in my tracks feeling like I was coming down with something for a few days to a week afterwards. I have been learning how to not do ANYTHING that takes more than a few hours or it usually takes months to get it done.
I have been learning how to pace. And I also have AD/HD which makes everything so much more challenging. When I am tired, I get more hyper. *banging head on desk* and preemptively resting? I have alarms all over the place & reminders to rest and they help a bit. I usually can't tell until I crash that i overdid it.
I have had so many 10 to 15 tube blood tests looking for Lupus, thyroid, etc... The 1st time no one told me how much they were taking & I was dizzy & sick for hours until my sister took me back to Kaiser. The interns were running around trying to figure out what to do with me & their lead doctor came in & said,"Have you had any juice or water since your blood test?" (I am tiny just under 5' & 120 lbs - they won't let me donante blood) I said I felt sorta sick so no. She had the interns bring me 2 cups of OJ & 2 bottles of water. That did the trick... Now I slam as much water as I can prior to the blood tests.
I have a Visible health band & track my symptoms with the app that goes with it & that also helps a bit. It shows me when I am overdoing it BUT I wish it would buzz or something so I notice I should low down & rest. (The app is free if anyone needs an EXCELLENT & customizable way to track symptoms. The band is about $90 BUT it is NOT necessary to use the app. You also have the option of donating your data for ME/CFS research but only if you want.)
Way too much info, my apologies.
The psych gave me Wellbutrin for the foggy brain. It helps a bit but on bad days I should NOT be driving. Thank God I work from home.
My Doc is amazing & I love her AND she is not an expert. She referred me to a Psychiatrist (who I also love.. thank God) and between the 2 of them & a LOT of testing the consensus was CFS or Long Covid... I have never had Covid, sooo... It has been years & multiple doctors just trying to get someone to not say "as women age" (REALLY!?! and from female doctors!! For shame!) or "the tests are normal - what do you think is wrong?" (If I knew that I wouldn't be here!)
It is getting harder & harder to work & the PEM is awful. I could not figure out why I would have a super productive day, go to bed feeling happy & with more plans for the next day & get stopped in my tracks feeling like I was coming down with something for a few days to a week afterwards. I have been learning how to not do ANYTHING that takes more than a few hours or it usually takes months to get it done.
I have been learning how to pace. And I also have AD/HD which makes everything so much more challenging. When I am tired, I get more hyper. *banging head on desk* and preemptively resting? I have alarms all over the place & reminders to rest and they help a bit. I usually can't tell until I crash that i overdid it.
I have had so many 10 to 15 tube blood tests looking for Lupus, thyroid, etc... The 1st time no one told me how much they were taking & I was dizzy & sick for hours until my sister took me back to Kaiser. The interns were running around trying to figure out what to do with me & their lead doctor came in & said,"Have you had any juice or water since your blood test?" (I am tiny just under 5' & 120 lbs - they won't let me donante blood) I said I felt sorta sick so no. She had the interns bring me 2 cups of OJ & 2 bottles of water. That did the trick... Now I slam as much water as I can prior to the blood tests.
I have a Visible health band & track my symptoms with the app that goes with it & that also helps a bit. It shows me when I am overdoing it BUT I wish it would buzz or something so I notice I should low down & rest. (The app is free if anyone needs an EXCELLENT & customizable way to track symptoms. The band is about $90 BUT it is NOT necessary to use the app. You also have the option of donating your data for ME/CFS research but only if you want.)
Way too much info, my apologies.
wingate
Senior Member (Voting Rights)
Hi @LittleVik, welcome to the forum. Perhaps @Creek can give you some pointers for asking your doctor for the referral. It sounds like the primary care doctor can refer you to one of the clinics. Kaiser is such a big organization that there should be enough ME and Long covid patients that if the doctor doesn't know how to do it, one of their colleagues should be able to assist.
You may have already seen these two articles, but I'll post them here just in case it's useful for anyone on the forum.
I just did some googling of Kaiser ME/CFS clinic and came across this thread on reddit in which a user shares their (negative) experience with one of Kaiser's ME/CFS doctors:
From my reading, their ME/CFS and Long COVID clinics are separate for some reason. Here is what I found on the Long COVID Clinic: https://lookinside.kaiserpermanente.org/blog/2023/03/06/living-with-long-covid/ This article is a few years old now, so it's unclear if that is still the state of things.
You may have already seen these two articles, but I'll post them here just in case it's useful for anyone on the forum.
I just did some googling of Kaiser ME/CFS clinic and came across this thread on reddit in which a user shares their (negative) experience with one of Kaiser's ME/CFS doctors:
From my reading, their ME/CFS and Long COVID clinics are separate for some reason. Here is what I found on the Long COVID Clinic: https://lookinside.kaiserpermanente.org/blog/2023/03/06/living-with-long-covid/ This article is a few years old now, so it's unclear if that is still the state of things.