Mostly clueless

One of many post-covid programs that doesn't care to prevent nosocomial infection with masking protocol. You can request they wear them but you have to repeatedly remind staff, and they do not have KN95s or N95s stocked anymore, there are surgical masks available for patients to wear in boxes available in various places in the building but healthcare staff seldom wear them. They refer you to RECOVER and other post-covid studies run at adjacent RWJ University Hospital locations if you're interested, that also have lacking airborne infection mitigation protocol even in wings that see immunocomp­romised children. The principal doctor in charge of the program, Dr. Shulman, had to be repeatedly asked to wear an N95, even in later appointments walking in with a surgical. When asked about the protocol she said that masks are meant to protect the wearer, disregarding that 2-way masking is demonstrably more effective, and that plenty of patients can't mask or have to remove their respirators in clinical situations to be examined, take medicine, etc. The care is not comprehensive at all; you get referred to every specialist in their network (RWJ) to treat parts of you in isolation with specialists who are thus far almost completely uninformed about long covid and associated diagnoses/symptoms. Dr. Shulman suggested I get salt capsules and compression socks like every off label POTS program but because I am disabled enough that I struggle to access the dozen appointments they referred me to where none of them have any background with LC or hEDS, I did not receive any additional treatment that is standard for long covid clinics like low dose naltrexone. I don't have their documentation on hand but the language in their brochures and sites have suggested GET more than antivirals or testing more comprehensive than fibrin, B12, cholesterol,.. In a follow-up appointment where I relayed that I was struggling to get to my specialist referral appointments due to brain fog, fatigue, and overwhelm from other symptoms like pain, she suggested the off-label desperate intervention for folks with fatigue that I had seen online of trying nicotine patches, since I'm not addicted to nicotine. So if you're even slightly more severe than mild to the point that these painstaking followups are inaccessible, probably don't bother. You will be asked to try nicotine patches before actual interventions. Ex. I was given a nutritionist appointment with a kind person could help with lowering cholesterol, but no indication they were knowledgeable on possible comorbidities like MCAS or histamine intolerance. The rheumatologist I was referred to in the same building (the Clinical Academic Building) at what is supposedly a connective tissue specialized clinic was completely unfamiliar with hEDS/HSD and POTS, and didn't seem interested in doing research or giving insight beyond conducting a rudimentary Beighton scale assessment that resulted in nothing but lingering pain and sending a couple X ray requests with no further followup. Neurology was similar in prescribing nondescript PT for cervical spine problems without acknowledging or considering the existing hEDS diagnosis in my chart and any treatment protocols for long covid outside of a statin. There is a single ill-equipped social worker for the whole program who just gives you the business card for the patient complaint box when they run out of answers to reasonable questions.