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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, I probaby shouldn't have. But I did, so let me clarify some things since there is a lot of rampant (incorrect) speculation on this thread: Dr...

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 shortly thereafter, and another patient had myositis in addition to ME/CFS.

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 on this study. https://www.niaid.nih.gov/news-events/niaid-study-examines-immune-responses-people-covid-19

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 experts, and they unanimously agreed that I meet all of the criteria for ME/CFS. A year later, I had a muscle biopsy, and that's when the muscle disorder...

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 have probably had the myositis for as long or even longer than the ME (which started suddenly in 2012). I had a droopy right eyelid pointed out to me...

Hello - The US radio show Marketplace (widely distributed) wants to talk to people who signed and received settlements with private disability insurance companies in 2018. The new tax law is making these settlements less attractive by now taxing the associated attorney's fees. (I found out the...

Probably just the heterogeneous nature of many cases of myositis. Meaning the process won't be seen everywhere in muscle. The literature discusses the low "yield" of biopsies - meaning that they often look normal even if the person is experiencing suggestive symptoms. That's why MRIs are used to...

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 an incision biopsy at Stanford. I had thought NIH would be able to use it, but they decided they needed to do on-the-spot processing that differed...

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 Rheumatology suggests new diagnostic criteria. https://www.nature.com/articles/nrrheum.2018.41

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 fibrosis or edema typical in many cases myositis.

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 were negative for it.

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 both times. I also have POTS and experience PEM and brain fog/cognitive problems (which are not features of any type of myositis AFAIK). So it would be...

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 it's unusual to see a mix of dystrophic features and inflammation in muscle. As for viral discovery, I'm not sure. The NIH docs said they are doing...

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 six months after I got my sudden fever, I started rapidly losing weight. I went from 185 pounds down to 155. I'm 6' tall, so 155 is underweight. I lost...

Addendum: Upthread I said I was disappointed the judge did not award lawyer's fees (make Prudential pay my lawyers) but I misunderstood the process. We are asking the judge to award the lawyer's fees. Turns out it's a separate process. Federal lawsuits are long and complicated.

Amy Maxmen's article was just nominated for a UK medical journalism award.

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 with a non-profit. They are trying but it's uphill. Recently some new Dept of Labor regulations for ERISA went into effect that help beneficiaries. I'll...

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 I could afford - both in $$$ and in energy - the testing required to prove my disability. The ERISA law is really messed up & tilted heavily in favor...