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The original was posted on /r/cfs by /u/soulful85 on 2024-11-17 07:04:34+00:00.
****Please see disclaimer below re: who she might be good for.
Dr. Blitshteyn had several twitter posts (now deleted) Re PEM and graded exercise that suggest extremely poor understanding of PEM, especially at levels worse than moderate. That’s not what’s most concerning, rather, it was the repeated refusal to take in the feedback of dozens of patients and a handful of other practitioners challenging those takes.
In these discussions, it emerged that several patients found her close minded, extremely dismissive of their concerns, with statements to severe people like “what have you got to lose, try (more meds, with possible worsening side effects) anyway…etc”, her own post: “what is the danger of walking to the bathroom and back? I tell you as a neurologist there is none”…) if not outright almost degrading in her treatment of them when they have booked appointments with her.
She hid and blocked some of these patients’ responses. A twitter search would bring some of those comments up and attached are some screen shots.
(I personally also had noticed how she’d removed her google listing, and therefore reviews, I suspect because there was a review that seemed very even, balanced, fair, and not a vengeful type stating how she wrote completely inaccurate information re: their POTS in their SSDI paperwork, refused to correct it despite multiple requests, and that ultimately messed up their case).
Wanted to post here because the search function on X/twitter is often broken, and given how the website is going, thought it would be a good idea to have that info here for reference in case a person is searching for more info before booking with her .
- I’ve never personally worked with her, but followed her on twitter for a while. Taking her other tweets at face value, it seems like she might be astute and skillful in offering a thorough diagnostic work up, ruling in/out various other neurological or neuro-immune or even autoimmune disorders as differentials or comorbidities.
She seems solid in her understanding of neuropsychiatric manifestations of POTS, MCAS, drug interactions, etc.
And at least she believes & advocates for LC & ME as “real” biomedical illnesses and not depression/anxiety/FND/stress, etc.
She’s also more financially “affordable” as a private pay non insurance taking US doctor compared to many other specialists.
She also seems open to trialling a variety of meds for symptom management
If one were to go to her, I think it’s either for the reasons above, documentation of diagnosis, second opinion, work up, med recommendations etc…and/or if they are not very vulnerable emotionally, and are solid within themselves as an ME pt, with a strong footing in the community, knowledgeable about PEM, can resist advice that feels harmful, etc. It seems that purely POTS or dysuautonomia patients or those milder review her better.