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Jennifer Brea🦒 Profile picture
@jenbrea
May 1, 2018 • 9 tweets • 3 min read • Read on X
I am probably going to feel like shit for the rest of my life (unless something dramatically changes) because “research takes time” when you fund it with the change you found under the @NIHDirector’s sofa cushions.
And I have a lot of life left. Granted, probably less than I thought I did when I was 20 but who really knows because we know absolutely nothing about the course of this disease over a life, what the long run effects are of having non-functioning natural killer cells...
Maybe getting diagnosed with cancer at 28? But I digress...
What I am feeling this morning is the fundamental absurdity of my situation. A sort of double bind. If I don’t take everything I have and am and fight like hell, I am never going to have even the hope of the life I want.
And if I do take everything I have and am and fight like hell, I am also never going to have the life I want. I want to be a filmmaker. If I devoted myself to filmmaking, I think I could become a really, really good one. I don’t want to be an activist. I have to be an activist.
And so @NIHDirector you have killed me twice. First you killed my body with your indifference. And now that same indifference is killing the person I was meant to be. Over actual pennies.
It would be so easy to find real money. It would be so easy to mention #mecfs ever time you talk about the future of the brain. It would be so easy to inspire (and incentivize) scientists to join this field. You choose not to. @NIHDirector
And everyday that choice destroys my chance at a life @NIHDirector
With every award you accept, every ribbon you cut, every photo op that is not a trip to visit and truly understand our post-apocalypse is you saying my life is worthless or at least worth less than the lives you choose to value @NIHDirector

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More from @jenbrea

Jennifer Brea🦒 Profile picture
Sep 21, 2018
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
Jennifer Brea🦒 Profile picture
Sep 16, 2018
If you were going to frame an umbrella term to comprise related diseases like ME, EDS, fibro, MCAS, POTS, endo (and others), what would you call it?
Note: I’m not talking about a scientific umbrella. We don’t yet know enough to say that there’s an underlying biological relationship and if there is, between which diagnoses, and for what reasons.
We just know that these conditions tend to flock together, whether for scientific reasons or social ones (e.g., diagnostic uncertainty).
Read 12 tweets
Jennifer Brea🦒 Profile picture
Sep 12, 2018
I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
Read 17 tweets
Jennifer Brea🦒 Profile picture
Sep 2, 2018
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.

thetimes.co.uk/article/kirsty…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets
Jennifer Brea🦒 Profile picture
Aug 22, 2018
Guys, I just learned that *A LOT* of people are ableist. 😲
Institutionalized ableism? Check. Welfare spending, scientific research, the medical system, public access, hiring & employment, consumer design, the media. We don't even do the minimum rational, in everyone's self-interest stuff yet.
But then #Afflicted happened and I LOOKED INTO THE SOULS OF MEN.
Read 13 tweets
Jennifer Brea🦒 Profile picture
Aug 14, 2018
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Read 106 tweets

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