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
Sep 16, 2018 • 12 tweets • 2 min read
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.
Sep 12, 2018 • 17 tweets • 3 min read
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.
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.
Aug 22, 2018 • 13 tweets • 3 min read
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.
Aug 14, 2018 • 106 tweets • 35 min read
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
Jun 26, 2018 • 4 tweets • 1 min read
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.
May 1, 2018 • 9 tweets • 3 min read
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...
Mar 21, 2018 • 40 tweets • 27 min read
I don't know who wrote this but this is absolutely false and deeply embarrassing for @SMC_London: sciencemediacentre.org/cfsme-the-illn… which has shown again and again that it has absolutely no respect for science and is willing to mislead the media by promoting pseudoscience.
First, on the idea that is is somehow a battle between the medical community and "campaigners..."
Mar 12, 2018 • 18 tweets • 4 min read
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Jan 7, 2018 • 20 tweets • 8 min read
.@_NathalieWright's withering @Independent piece lays bear the gaps in how #mecfs is viewed on either side of the pond and the vested interests that have contributed to the disability and death of millions.
It is one of if not the first high-profile pieces to tackle the institutional incentives and various forms of motivated reasoning underlying the "biopsychosocial" model.
Dec 30, 2017 • 26 tweets • 4 min read
I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher.
And because I think I still entertain a fantasy of one day sitting down to lunch with her and saying, "woman, if you mean as well as you say you do, what on earth are you doing?"