On Dec 29th, I had my first appointment at the Stanford PACS (post acute Covid syndrome) and ME/CFS clinic, and even though I saw a young PA rather than the doctor (Hector Bonilla) who heads the clinic, I was very impressed. My intake appointment with the PA and an Argentinian doctor doing a fellowship with Dr. Bonilla was 90 mn long (yes, super exhausting, but worth it, and they had a bed for me to lie down upon), during which they took a thorough history, looked through all of the testing results I'd brought with me (ruling out everything from hypothyroidism and sleep apnea to any cardiac issues) and also the daily symptom journal I'd been keeping since October. (A friend of mine who is terrific at fast-skimming and collating/condensing made the 35pp journal into a summary with a few notable examples of better days and worse days.) They were interested in my Hx of JIA with a severe viral onset followed by months of debilitating fatigue before any joint symptoms arose but couldn't say for sure whether the recurrence of debilitating fatigue and concomitant symptoms I've had since 1994 was due to a retriggered virus or due to something else. They asked me initially what my hopes were from this visit with them, and I said that really, just having a concrete diagnosis would be hugely reassuring and helpful to have when dealing with my other clinicians. After going through my labs and hearing my story, they said they definitely believe I have ME, in part because I have hallmark symptoms: sleep disturbance and feeling like I haven't slept even after sleeping for 10 hours per night; cognitive impairment; post-exertional malaise (they said that PEM is unique to ME and possible long Covid as far as is known currently); and debilitating fatigue that has lasted more than 6 months. They gave me a very brief pathophysiological explanation of ME (brief because we were nearly out of time for their next patient): mitochondrial dysfunction, neural inflammation (that is not measured by the inflammatory markers I'm used to, like sedimentation rate and C-reactive protein). They ordered some blood labs (heavy metal toxicity--this may be more for research purposes, as I'm fairly certain I do not have lead or arsenic poisoning; creatine kinase; aldolase). They then recommended a few behavioral changes: diet (although they backed down on that one quickly when my husband mentioned I'm mainly on liquids now due to TMJ deterioration secondary to arthritic damage), pacing (they said that before and after every exertive activity, I should rest in a way that helps my brain rest, although I've not been good about following that to the letter: dark room, ear plugs, lying down--this not because I get migraines but because the brain uses the most energy, and energy is deficient). They also said they would like to try me on a subclinical dose of Abilify (I see there's a thread on that drug, which I'll check out), since a cohort study showed at least some improvement in 70% of patients. (I haven't seen the study yet--Nancy said she'd send it to me once she was back in the office.) Even though I was utterly used up after the appointment, I felt more hopeful and validated than I had in decades. And I want to thank the folks on this site, especially @Trish and @JemPD, who immediately answered my question about having more trouble sleeping the more tired I get (a symptom no doctor or other person could relate to before that) as being typical of PEM, thus making me think more seriously that I might have ME, and @shak8, who gave me a San Francisco/Bay Area recommendation of someone who sees ME patients, which then led me to the Stanford clinic. You all are terrific!
It is great to hear about a specialist service operating in the same ball park as their patients, rather than, to mix metaphors, disappearing off into a parallel universe.
Sorry, NelliePledge. "Hx" is medical shorthand (in the US at least) for history, and JIA is juvenile idiopathic arthritis, what Juvenile rheumatoid arthritis is now called (because they don't know what the h*$
Yes, I just wish everyone here had access to a clinic like the Stanford one. I am particularly lucky to live where I do (about 1.5 hrs from Stanford).
Hi SunnyK, I'm pleased for you that you found the clinic helpful. It's interesting to hear that they recommended Abilify. They do seem particularly keen on getting their ME/CFS patients to try it, despite mixed results in their own clinic report discussed here: Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021 Some of our members have tried it, with mixed results. I'm making no comment on whether you should try it - that's between you and your doctors. In any case our rules don't allow us to make recommendations on treatment to individuals. Aripiprazole - Abilify
Thanks for this. It's useful context, I think. Abilify can have some strong side effects, so please be vigilant and report anything unusual you note as early as possible. (Hopefully you'll be fine.) Good luck with your care!
FWIW—Reviews of B*nilla per se are generally not great to concerning—do a search on PR for specifics.
