Some Comments
As a retired internist I am always amazed that I can make a diagnosis after reading the headline, and these poor people seem unable to find an MD to help. EDS, hyper mobility has long been known to be associated with ME/ CFS etc.
When I was in practice, patients like this were what kept me coming to work and what kept my brain alive, preventing me from sinking into a morass of repetitive visits of back pain, colds, cholesterol. But most of my colleagues would run the other way from folks like this. They are complicated, time consuming and do not respond to easy answers.
However, anecdotal stories like this one do little to examine the extent of the underlying problem.
As reflected in one of the comments about U Penn, many American University Medical centers want nothing to do with complex patients who do not fit departmental or specialty boxes and who do not require a lot of lucrative procedures.
I know little about Penn, but Washington University in STL has little interest in Long Covid, ME/ CFS had has no dedicated team.
Yale and Harvard however have major clinics and research efforts underway.
NYT should do an article about the disappointing response of some medical schools to Long Covid, the most significant cause of disability of our time.
Another
At the University of Pennsylvania in Philadelphia, rheumatologists and medical geneticists refuse to see patients with hypermobile joints. They describe this phenomenon as a diagnostic morass with no cure that obsesses people, mostly women, with an endless variety of nonspecific, seemingly unconnected complaints. With new patient waiting lists extending months into the future, they prefer to see people they can more readily help.Other conditions are similarly avoided for similar reasons, including fibromyalgia, chronic fatigue syndrome and long Covid, mitochondrial disease, and borderline personality.At the tail end of my long clinical career, I identify the best doctors as those few who attend disproportionately the most difficult patients afflicted by the most challenging problems with superior listening skills, judgment-free compassion, and creativity.
www.nytimes.com
