More to be appalled at, as I read about that telemed encounter during which you are STILL not even being granted status as a long COVID case. I honestly don´t get how it can damage the quality of research into long COVID for reports of ALL otherwise inexplicable new syndromes that develop after COVID to be taken under serious consideration. The failure to register and certify all heartfelt reports (for which there could be no logical motive for falsification or exaggeration that I can think of) and then to classify these as at least ¨tentative¨ or ¨credible¨ sequelae of COVID, so that when greater numbers of the same symptoms accumulate, they can quickly be brought in to the bigger picture of research, is bewildering to me. Moreover, WHAT IF some sequelae, in an individual, CAN in some way be associated with a pre-COVID condition in the reporting patient??? That does NOT mean that these sequelae are not ALSO COVID-affected, e.g., made worse after COVID or made more persistent after COVID. I would not, in fact, be pursuing B1 repletion for myself if I hadn´t realized that I almost certainly CAME to COVID with the pre-existing condition of a lifelong (and possibly inherited) B1 malabsorption disorder, which explained a long slew of autoimmune/inflammatory problems I´ve had, and also a valvular heart disease I developed in mid-life. In fact, I am now assuming that possibly most of us with probable or confirmed long COVID can look back at our histories and spot health challenges that somehow foreshadow the long COVID pictures we each manifest. Everyone already KNOWS that long COVID is one of many post-viral syndromes in humans . . . Would it invalidate COVID research, e.g., if all patients complaining of long COVID who had also suffered prior post-viral syndromes (like CF/ME after Epstein Barr infection) were permitted to be classified as COVID long-haulers? I am no scientist, but surely there is some confusion among clinicians who are in charge of determining whether we really have long COVID. It is brilliant of you to have retained a care coordinator to bring more power to your case. All of that said, from what I am learning here, I am beginning to think that maybe the worst thing we can do is go to a long COVID specialty clinic, because if we are turned away there, we are then authoritatively labeled ineligible for further care within that rubric. By sheer luck, my internal medicine doctor, who has a really powerful mind (and is gentle and humble), has listened to me very intently about all this, and also my pain/rehab doctor even wants to try, on me, the standard therapies for Mast Cell Activation Syndrome, fibromyalgia/chronic fatigue, and disabling Generalized Anxiety Disorder. I haven´t jumped at the pain docś offers yet, but only because my internist is very enthusiastic about my B1 protocol, and has approved it and even suggested that it may well work, sparing me a new adventure trying to convince an allergist/immunologist that COVID made something go terribly awry in my previously healthy respiratory system. So I now think that finding the most intelligent and diligent doctors who are generalists (e.g. internists or pain/rehab/functional medicine devotees) may be lots more helpful to us than are long COVID clinics. Possibly the long COVID clinics are waiting for some completely novel single therapy to be concocted for all of us (?) before they are even willing to help us. Yet what could that silver bullet possibly be, UNLESS it involves jump-starting our deepest metabolic functions like mitochondrial function. And we ALREADY know ways in which to do that. . .Some branches of functional medicine already do nothing BUT mitochrondria-focused medicine. . .Have you tried such a physician? I think that physicians from many specialties can develop a subspecialty in functional medicine, these days. Now I am rambling. . .But when you are feeling stronger, perhaps you can dig into some of the functional medicine literature now available online. . .Lots of good books on this now, written for various audiences. . .And there are non-MDs who hold themselves out as functional medicine practitioners, e.g. NDs, DCs, etc. . . I am leery of the non-MDs, though, in this area. My model for real genius in functional/metabolic medicine is Dr. William Li, MD/PhD, who invented the Eat to Beat diet programs. Following his science (which is staggering. . . He is a former cancer researcher extraordinaire), I reversed my cholesterol and A1c problems in completely in only 8 weeks, before I got COVID (and also lost 20 lbs utterly without effort). The man is a genius. I only wish he were also currently involved with long COVID research. . .