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Jennifer Brea🦒 Profile picture
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29 Nov, 4 tweets, 2 min read
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
GRAB THE LOW-HANGING FRUIT!!

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More from @jenbrea

Jennifer Brea🦒 Profile picture
1 Dec
Vlad hits the nail on the head here. A lot of it is being generated by discussions on @s4me_info, a UK patient forum. I do my best to keep my mouth shut, but this has all been unbelievably painful and has taken a major toll on my mental health.
I know most forum members don’t engage in this discussion and may not even be aware of the running commentary about me and everything I say, but I am shocked that it is tolerated. (Anyone with a differing POV has long retreated, been put on moderation, or banned.)
I try to do my best to ignore it, but people point things out to me from time to time, thinking they are being helpful.
Read 11 tweets
Jennifer Brea🦒 Profile picture
30 Nov
We need a healthcare system that explicitly allows for two other specialty tiers that (at least in the US) informally exist:

1) the specialist internist (a PCP for specific diagnoses and complex cases that a “generalist internist” cannot possibly handle well)
2) Super specialist specialists. The handful of -its who exclusively see patients with the same diagnoses, like my neurosurgeon.
He was able to diagnose in 24 hours what 30+ MDs had failed to see. Because for him the “weird” and “rare” is what he says five times a day. If you have one of the handful of conditions he specializes in, he can save you a decade or more of frustration.
Read 11 tweets
Jennifer Brea🦒 Profile picture
28 Nov
Separately, I’m trying to work on a Medium post re: my concerns about people pursuing neurosurgery. My basic position is diagnosis for all, surgery for a few and only after 6-24 months of intense self-education, seeking multiple opinions, and exhausting nonsurgical options.
(Unless your doctor deems your case medically urgent, which is rare.) I am similarly having a hard time writing this piece as it quickly becomes an overly long, overly technical treatise. This topic is so nuanced and complicated, with many unknowns.
So if you have any questions about surgery...please do ask them. It might help me figure out how to frame and focus the piece!
Read 25 tweets
Jennifer Brea🦒 Profile picture
26 Nov
So #thankful to have spent the last many days wandering a deserted island, doing what I haven’t been able to do in a good decade. A woman in a peach windbrea...
I am #thankful for my body, which is fragile but resilient. This year, I spent six months mostly bedbound following #COVID19. In the aftermath, I found myself almost as weak as I was after my neurosurgeries. COVID also worsened my #MCAS to a terrifying degree.
In September, I began a (second? third?) long climb of physical therapy and strength training so that I could stand and walk again.
Read 10 tweets
Jennifer Brea🦒 Profile picture
21 Nov
“Just listen to your patient, he is telling you the diagnosis.“ — William Osler

My problem: I was a novel, when all my doctor really wanted or had time for was a tweet.
That is the reason I have been ill for the better part of a decade. It was all there: diagnosable, treatable, actionable. I simply had too many things wrong with me at once. I was, in a sense, too sick for medicine.
I think I may have stumbled upon my final, outstanding diagnosis, the rare thing that could explain all the dangling symptoms that my other “rare” diagnoses cannot. I’ll never be able to prove it (unless, perhaps, I have another acute episode).
Read 23 tweets
Jennifer Brea🦒 Profile picture
8 Nov
Acetylcholine receptor autoantibodies have been found in subsets of #MECFS and #POTS patients. This can impair autonomic nervous system function and mast cell regulation. What I did not know is that these autoantibodies can also impair collagen synthesis.🤯
1️⃣Acetylcholine autoantibodies in #MECFS and #POTS: me-pedia.org/wiki/Acetylcho…
2️⃣ Herpesviruses and acetylcholine autoantibodies: me-pedia.org/wiki/Acetylcho…
3️⃣ Collagen synthesis in acetylcholine receptor M3 KO mice: sciencedirect.com/science/articl…
Is it possible that a subset of patients have an acquired, autoimmune connective tissue disorder? Could this help explain observations of: herpesvirus reactivation, dysautonomia, MCAS, and elevated hydroxyproline/lysine in a subset of #MECFS patients, w/ w/o hypermobility?
Read 6 tweets

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