Stanford CFS Clinic: what's it like in 2022?

[Zebra]

Hi, Comrades!

I've been a patient at the Stanford CFS Clinic for a few years now, and I've seen it go through many changes, both in healthcare providers on staff as well as treatment approaches.

It's been over a year since my last routine follow up appointment, and to manage my anxiety about my upcoming return to the clinic, I would so appreciate hearing from other PR members who have had either a first-time appt or follow-up appt at the Stanford CFS Clinic in 2022.

If you've had an in-person or video appt at the Clinic in 2022, would you please be so kind as to share your experience, observations, opinions, etc.?

Some of the issues I am curious about are:

1. Who is on staff these days besides Dr Hector Bonilla? Last year I was told a Nurse Practitioner was coming on board. Last time I was there, the Clinic had a Physician Assistant in training, but she appears to have left, although I could be mistaken.

2. Is there any shift in thinking about how to best manage the disease? In addition to prescription medicine, I have received instructions from the Clinic on resting, pacing, avoiding crashes, as well as diet and supplement recommendations.

3. At my last visit to the Clinic, my "personal" treatment plan was to continue low-dose naltrexone and low-dose anti-virals, with a BIG PUSH to try Abilify, which I did not feel comfortable with trying at that time. Honestly, I am anticipating being scolded about not trying Abilify in the long gap between appts, and perhaps that is the root of my anxiety about my return visit.

Please don't feel compelled to address these exact questions, unless you want to! As mentioned above:

If you've had an in-person or video appt at the Clinic in 2022, would you please be so kind as to share your experience, observations, opinions, etc.? Thank you so much!

 

[Pyrrhus]

low-dose anti-virals

May I ask if the "low-dose antivirals" was something they recommended to you?

If so, which antivirals did they recommend and did they give a rationale?

 

[Zebra]

May I ask if the "low-dose antivirals" was something they recommended to you?

If so, which "antivirals" did they recommend and did they give a rationale?

Of course! But I'd also really like to keep the thread focused on what the clinic is doing now, so I can get my questions addressed.

The first antiviral THEY suggested and prescribed to me was Valtrex. I couldn't tolerate it long-term, so I was switched to Famvir.

I believe the rationale for prescribing antivirals to me was to prevent any further Herpes virus replication that may still be at play.

According to my office visit notes, other antivirals they prescribe, when appropriate, are Valcyte and Zovirax.

Again, hoping someone who has had an appt at the clinic more recently than me will share their complete experience with me/PR, beyond antivirals.

 

[Zebra]

I am bumping up my own thread in hopes that a patient who has recently been to the Stanford CFS Clinic will see and be kind enough to respond. Thank you!

 

[jnat]

I was at the Stanford ME/CFS clinic for the first time this month, Aug 2022.

1. On staff, Dr. Hector Bonilla, that's the only person I saw.

2. About management approach, Dr. Bonilla pushed LDN as a first step. I've been on valacyclovir for 1.5 months and feel invested in the approach. He discouraged using anti-virals despite my repeat high EBV viral capsid IgM levels for over 1.5 yrs. He dismissed studies on use of anti-virals for reactivated EBV. He didn't present compelling research for LDN, but I've been reading on my own and it seems worth a try. Overall, his synthesis of medical research on these treatments seemed inconsistent (leaning on LDN studies that were n<10 and retrospective, dismissing double-blind random control studies on EBV where n>20). He preceded recommendations with a 10-min lecture on symptoms of CFS (of which I'm very familiar) and suggested resting and avoiding over-exertion, which I've been doing, but didn't get into how to manage need for income versus disability (a real problem).

3. Personal treatment plan didn't feel personal at all. I felt rushed on board his treatment train. The interaction was tense as I asked questions trying to assert my individual concerns (e.g. immune deficiency, genetic results from immunologist, food intolerances, potential mast cell activation). He also suggested next step was Abilify. I don't think he's the one who could convince me to take it. He ran limited tests (most repeats of what already done) to assuage my concerns, left me with "let's look at all the cards on the table". I go back in Oct, can understand the anticipatory stress of fighting to be heard.

Be strong! I had the sense that Dr Bonilla has nuggets of helpful info based on clinical experience, but I feel strongly that management steps are my decisions. And I appreciate when doctors respect that. I always filter recommendations based on my own research, situation, and input from other doctors. Some doctors are willing to engage in discussion in a friendly, supportive way and can amicably end with "it's up to you." Here, I felt a little more struggle than I'd like.

In contrast, I had seen Dr. Bela Chheda (Mountain View) for a short consult in May. She started by listening intently. She had reviewed mounds of my summaries and clinical notes. She was chock full of perspectives that she shared efficiently with references for me to dig into, but didn't do a hard sell on anything. She ran loads of tests. I wish she was covered by insurance!

 

[hapl808]

Not to derail, but I spoke to Stanford ME/CFS last month and I found the whole process a bit frustrating and didn't move forward with scheduling an appointment. They seemed very concerned with whether your referral specifically had the proper ICD code and no other ICD code diagnosis that could interfere. Funny to me for something where the diagnosis is relatively meaningless.

My dream is an affordable doctor (cash or insurance) in CA who I could do 90% of my interactions by email and save everyone a lot of time and energy. I'm no longer at my best on a video call let alone an in-person chat, and I hate the military precision required to prepare for months for a 20 minute appointment where you'll be dismissed or lectured to about stuff you already know better than they do.

I just want to say: hey, I tried LDN and didn't work, Doxy and Zithro had initial good results but didn't help last time I tried, lots of GI involvement when I exceed my energy envelope, what are your thoughts? Here are four meds I've thought about trying and links to the reasons I might want to use them.

Does such a thing exist? Every time I find a doctor that looks promising, talking to their staff is so exhausting these days that I don't even get to the doctor. "Are you a patient? Ah, you're a new patient. So the first appointment has to be in-person even though she'll do nothing to examine you and probably won't even read your labs or carefully composed medical history. So please drive here and see if you can get yourself a hot steaming case of COVID while waiting an hour in our unventilated reception area. Cheers."

In a foul mood I guess.

 

[Imaximus786]

I have an interesting experience because my wife is not only a patient of Stanford but she’s also a patient of Dr Montoya. I will be blunt, Stanford sucks. Bonilla pushes Abilify on his patients because it’s his “claim to fame.” He discourages use of Anti Virals because his predecessor and mentor Dr Montoya had success with them. In contrast, Dr Montoya has been unbelievably responsive, caring, compassionate and driven to solve the problem. Stanford CFS clinic has done nothing to help my wife. Dr Montoya’s anti viral approach is the reason my wife has been getting better. I have heard quite a few stories of Bonilla reprimanding his patients when Abilify stops working. Professor Akiko Iwasaki recently released great research into long Covid, and that research validates Montoya’s approach to treat antivirals and it shows no theoretical evidence of Bonilla’s approach. Low dose antivirals are like washing a yacht with a squirt gun, it’s not an effective strategy. You need a proper dosage for a long period of time.

 

[JES]

I'm not sold on antivirals either. We have very few recovery stories here or elsewhere of long-term antivirals curing ME/CFS, no matter what the dosage. Long-term high-dose antivirals also require regular kidney or liver tests depending on the antiviral, which may be another reason they have transitioned from mainstream use of them.

My hunch is that low-dose Abilify may be more effective and also safer for many of us, but the problem with Abilify seems to be loss of response in many of us, if not in weeks, then in months or a year.

 

[Imaximus786]

I'm not sold on antivirals either. We have very few recovery stories here or elsewhere of long-term antivirals curing ME/CFS, no matter what the dosage. Long-term high-dose antivirals also require regular kidney or liver tests depending on the antiviral, which may be another reason they have transitioned from mainstream use of them.

My hunch is that low-dose Abilify may be more effective and also safer for many of us, but the problem with Abilify seems to be loss of response in many of us, if not in weeks, then in months or a year.

Actually there are quite a few stories of improvement on anti virals. Between Lerner and Montoya there must be several hundred if not more. The problem is identifying the infectious cause, which can almost be impossible because the infection could be hiding in any tissue in your body. If you have a clue to what infection is causing your illness you have a chance. If Abilify stops working or it causes any cardiovascular issues, you’ll have to come off the drug and the withdrawals alone are enough to cause patients to become bed bound. Dr Akiko Iwasaka’s recent research I think proves that there’s reactivated viral issues in long covid/CFS patients.

Lerner/Montoya/Chia are the only doctors I know who’s treatment put people into remission. The anti viral approach has the most success of any treatment yet for some reason the medical community has moved away from that theory even though it’s been supported by research. Abilify and lack of exercise is a horrible combination for your cardiovascular health. Psychotropic medication for a physical illness is also perpetuating the false narrative that this should be treated with anti depressant medication.

 

[Pyrrhus]

Low dose antivirals are like washing a yacht with a squirt gun

Or, as I would put it, "low dose direct-acting antivirals (DAAs) are like trying to fight an army with toothpicks."

Due to the decidedly non-linear dose-response curve of DAAs, some people tolerate the full standard dose much better than a low dose: Since taking a non-standard low dose only pokes the foreign army with toothpicks, which can rile them up, but won't hurt them, a low-dose of DAA can sometimes result in strong negative effects where the standard full dose wouldn't.

We have very few recovery stories here or elsewhere of long-term antivirals curing ME/CFS

The only direct-acting antivirals (DAAs) that are currently available to patients are drugs that only work on herpesviruses. The fact that there are so few recovery stories suggests to me that herpesviruses are not the cause of ME. (But it says absolutely nothing about other viruses.)

But there is ample evidence of reactivations of herpesviruses in ME, in Long Covid, and in many other inflammatory conditions. So it certainly makes sense to take such anti-herpesvirus medicine if you have sufficient evidence of a herpesvirus reactivation.

Example: I used to get occasional shingles outbreaks with my PEM. My doctor prescribed me valacyclovir to stop the shingles outbreaks. The antiviral successfully treated the reactivation of the herpesvirus (shingles), although it had no effect on any of my ME symptoms. (I have been taking it for over 10 years without issue.)


But... we've gone off-topic and @Zebra created this thread simply to ask about other people's experiences of treatment at Stanford. Let's try to stay on topic...

 

[Zebra]

But... we've gone off-topic and @Zebra created this thread simply to ask about other people's experiences of treatment at Stanford. Let's try to stay on topic...

Thanks, @Pyrrhus!

For folks that want to talk about antivirals or Abilify there are numerous other threads dedicated to those topics.

 

[nancyS]

I was at the Stanford ME/CFS clinic for the first time this month, Aug 2022.

1. On staff, Dr. Hector Bonilla, that's the only person I saw.

2. About management approach, Dr. Bonilla pushed LDN as a first step. I've been on valacyclovir for 1.5 months and feel invested in the approach. He discouraged using anti-virals despite my repeat high EBV viral capsid IgM levels for over 1.5 yrs. He dismissed studies on use of anti-virals for reactivated EBV. He didn't present compelling research for LDN, but I've been reading on my own and it seems worth a try. Overall, his synthesis of medical research on these treatments seemed inconsistent (leaning on LDN studies that were n<10 and retrospective, dismissing double-blind random control studies on EBV where n>20). He preceded recommendations with a 10-min lecture on symptoms of CFS (of which I'm very familiar) and suggested resting and avoiding over-exertion, which I've been doing, but didn't get into how to manage need for income versus disability (a real problem).

3. Personal treatment plan didn't feel personal at all. I felt rushed on board his treatment train. The interaction was tense as I asked questions trying to assert my individual concerns (e.g. immune deficiency, genetic results from immunologist, food intolerances, potential mast cell activation). He also suggested next step was Abilify. I don't think he's the one who could convince me to take it. He ran limited tests (most repeats of what already done) to assuage my concerns, left me with "let's look at all the cards on the table". I go back in Oct, can understand the anticipatory stress of fighting to be heard.

Be strong! I had the sense that Dr Bonilla has nuggets of helpful info based on clinical experience, but I feel strongly that management steps are my decisions. And I appreciate when doctors respect that. I always filter recommendations based on my own research, situation, and input from other doctors. Some doctors are willing to engage in discussion in a friendly, supportive way and can amicably end with "it's up to you." Here, I felt a little more struggle than I'd like.

In contrast, I had seen Dr. Bela Chheda (Mountain View) for a short consult in May. She started by listening intently. She had reviewed mounds of my summaries and clinical notes. She was chock full of perspectives that she shared efficiently with references for me to dig into, but didn't do a hard sell on anything. She ran loads of tests. I wish she was covered by insurance!

For my last telehealtg in 2024, I prepared a page of questions for Dr Bonilla related to current research I feel applies to me but we spent the 30 min appointment going through his agenda (including several on the spot flash cards of smiley and not so smiley faces for me to select how I feel. -Information which should be collected before the appt so I can reflect on how I am doing overall versus just at that moment). After going through his agenda and suggesting I try, LDA, he tried to end my appointment early despite my questions which I had typed out and placed on the screen. Mostly I learn latest science from Heath Rising, OMF, Simmeron (all sources he should be familiar with). I had questions related to Mestinon, orthostatic intolerance, CCI and structural impacts plus others around some potential treatments. he told me he was not going to prescribe anything experimental which that would all be. (I thought this was silly, since LDA is experimental yet subscribes it). And he also wasn’t going to refer me for any chest, brain, spine imaging or tilt table testing. I also asked if there was more up-to-date LDA science since what he had published in ~2021 but he didn’t have any to share (despite that he should have been tracking his patience quite closely this entire time). Stanford needs to hire more chronic fatigue doctors for this clinic who have a better scientific approach.