Went for a routine test. Tech’s son had #POTS. Showed her my compression socks. But not everyone wants to chat about health, right? So I asked if she wanted to hear more… (1/)
Her: “We know NOTHING! My Kaiser insurance sent me to this MLM, timeshareish scam & told my son to “tell himself he’s safe” when his heart rate increases.”
“They asked lifestyle stuff but he eats healthy & exercises already. They said symptoms were ‘normal for him’.” (2/) #CBT
When she said ‘nothing’ she meant NOTHING, folks. Nothing about compression socks, nothing about recumbent exercise, nothing about avoiding high carb meals, nothing about increasing water intake, nothing about meds. Just patient-blaming CBT & eat more salt. (3/) #POTS
We moved to an empty office where we chatted for an hour+. I think this poor lady’s lunch…
“I don’t know what to do,” she said. “We [parents] knew we were being scammed. We knew my son couldn’t think his #POTS symptoms away but that was all they had so we gave up.” (4/)
We need to root out these therapies delivered this way. Clinicians, check your patient education modules on these diseases and ensure they are USEFUL and ETHICAL. Not a six hour course with negative patient value, so insurance can claim care was delivered. (5/)
We need to ask not whether we have something to offer, but whether we have something useful to offer.
(And yes, I also told her: I’m not a doctor and none of this should be taken as medical advice.) (6/6)
Because so many people had asked, a quick thread on #POTS, what it is, and some general management stuff:
Let's say you have #MECFS or #LongCOVID and you think you might be ready to work again.
But only if you received the right kind of accommodations at your workplace... how would your employer (or you, even!) know what to suggest?
A few years back, our own Ben Hsuborger (1/5)
...worked with a work accommodations website called AskJan to revise and update their page on #MECFS, and he did an incredible job. The best aspect is that, when you scroll down, you can see accommodations by symptom. (2/4) #DisabilityTwitter (2/5)
Issues with concentration, memory, and executive function are central to #MECFS presentation. You can find AskJan's list of accommodations for #ADHD and executive functioning here (note: two links to follow). (3/5)
Excellent news! #CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵 (1/4)
Some highlights:
✨Lists pathogens known to lead to chronic issues, inc. COVID, Borrelia, EBV
✨Talks about how some symptoms are specific to pathogen, others are common to many infection-associated chronic illnesses
✨Lampshades #MECFS multiple times in the article (2/4)
Highlights, cnt'd
✨Common-language etiology section that outlines a very complex picture very clearly
✨Mentions that everyday testing may not show anything but this does not mean symptoms aren't impairing
✨Lists their current projects (could be more/better, but still) (3/4)
#Disability rates have skyrocketed in the United States in the wake of #COVID, with infection-associated chronic illnesses like #MECFS, #POTS, & #MCAS surging. US Census figures currently report that 14% of Americans are now disabled. (1/7) 🧵
Rather than address the growing crisis of an ongoing pandemic, not to mention those already disabled, the US Census is responding by changing the definition of disability.
And if they do so, the rate of disability as identified by the Census is slated to drop to 8%. (2/7)
Dr. Bonnie Swenor, Director of the Johns Hopkins Disability Health Research Center, says, "These changes have moved forward w/o the input of the disability community & have far-reaching, negative implications for disabled people..." (3/7)
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with @GrachStephanie and Ravi Ganesh and Tony Chon on this! 🧵#MedEd #MedTwitter mayoclinicproceedings.org/article/S0025-…
A concise clinical review is limited to a specific word count and a specific citation count, so we did our best to include the most vital information for diagnosis and treatment of #MECFS. (2/)
Concise clinical reviews are also a way to offer CME credit. Medical providers can take the free CME by reading the paper carefully and then answering the case-based questions that follow. #MedEd (3/) mayoclinicproceedings.org/article/S0025-…
"We... emphasize the need to build on and complement, rather than merely repeat, existing research from similar conditions, such as #MECFS, #Lyme disease, #dysautonomia..." (2/)
"Further exacerbating PASC’s time pressure is the NIH’s historic underfunding of overlapping illnesses with potential post-viral origins that have extremely similar phenotypes to #LongCOVID (Komaroff, 2019). If research for diseases such as #MECFS... (3/)
Let's talk about the UK's Science Media Centre and its history.
The Centre calls itself "an independent press office for science, working closely with press officers from universities, scientific companies, research funders &leading science and engineering institutions."
The SMC is a publicly-funded PR group, representing influential corporations whose financial interests are threatened by the interests of the public.
Connie St. Louis, then president of the Association of British Science Writers, said:
St. Louis performed a study on SMC. Over half the SMC’s "expert reactions" were covered in the press and "in 23% of the stories... the only quotes were those that came from the centre."
“Whatever the SMC delivered to them is what they used,” she said. tinyurl.com/2hhf562n