Hi Everyone, Brian here - I appreciate folks picking up the thread. When I tweeted the name of the gene product they were working on back in July,...
Three out of the 20-some patients brought in were given other diagnoses. One had Parkinsonism, one had a rare form of cancer and passed away...
Here's a link to the study that NIH is funding. It's an immunology study of COVID patients. Joseph Breen at NIAID did not give us a dollar figure...
Thanks for posting it. I am still diagnosed with ME/CFS. I went through phase 1 of the NIH study, had all of my records sent to the 5 outside...
I was one of the six patients the NIH team excluded from the data analysis. My second diagnosis, made by the NIH team, is 'atypical myositis.' I...
Hello - The US radio show Marketplace (widely distributed) wants to talk to people who signed and received settlements with private disability...
Probably just the heterogeneous nature of many cases of myositis. Meaning the process won't be seen everywhere in muscle. The literature discusses...
Do you have any citations handy on enteroviruses and myositis? Thanks.
The reason I ended up with two muscle biopsies is probably rare and weird. I doubt many people get two. I decided to get one on my own, and it was...
Could be. The NIH study should help answer the question. I haven't heard of any other biopsy results yet from that study.
For those interested in this area of medicine, diagnosis and classification of myositis is an evolving field. A recent paper in Nature...
Yes, I ended up having biopsies on both legs. Only one leg showed the abnormalities. Also, my MRIs look pretty much normal. They don't show the...
Yes, I've been checked for all the known myositis-related antibodies. On one test last year I was positive for the anti-SRP antibody but re-tests...
Hi, yes, I fit ME criteria. I've had a two-day CPET at Workwell and a single-day CPET at NIH three years later. Results were very much ME-like...
It's more likely that I qualify for a diagnosis of some type of myositis. But the dystrophic fibers are weird (and concerning). I gathered that...
Hello - I've been pretty open and public about my illness, and I've had something come up that I'd like to hear from the community about. About...
Addendum: Upthread I said I was disappointed the judge did not award lawyer's fees (make Prudential pay my lawyers) but I misunderstood the...
Amy Maxmen's article was just nominated for a UK medical journalism award. [MEDIA]
Not quite no one. A good friend of mine in DC works on disability policy, and has for 20 years, first on Cap Hill for various senators and now...
I'm fortunate that I found a good lawyer willing to take my case on contingency (meaning they don't get paid much unless we win the case) and that...
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