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
If that’s not your cup of tea, that’s totally fine! But please do respect the space for others who are interested in engaging in this conversation. #Nightingales
Why #Nightingales? Well, Florence Nightingale was a badass. She went away to the Crimean War, got sick, came home, and was never the same. Yet, from her bed (and long before the internet!) she revolutionized healthcare.
#PWME claim her as their own; so too do people with #FIBRO as well as several other diagnoses. We can never know what she had, but I hope she can be a role model and avatar for all of us trying to understand our bodies and how best to live in them...#Nightingales
...and to navigate and hopefully, reform, a medical system that IS NOT SERVING US. #Nightingales
This may eventually become a regular Twitter “chat” but as I’m in the hospital, bored, and my schedule, unpredictable, I thought I’d start by sharing a series of asynchronous “get to know you” questions you can answer at any time. #Nightingales
To answer, Q1, tweet “A1:” + your answer and use the hashtag #Nightingales

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More from @jenbrea

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
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
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
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
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
Jun 26, 2018
I know people have been asking how I'm feeling. I don't have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I'm weak and it's going to take time.
The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn't sit up, much less walk, I was snapped back to the 19th century.
These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I've never experienced the inequality of what we must live everyday in such a direct way.
Read 4 tweets

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