This was it's 13th conference, and it's grown from a small meeting to a whole week of talks from researchers/scientists in different stages of their careers... 1/7
#IIMEC13 - There's been a lot of science. A lot of talking. There's been scientists from different #biomedical fields offering their expertise.
The dedication/determination from researchers was very clear throughout.
For some reason, #MEcfs is political minefield... 2/7
#IIMEC13 - The people who suffer from this awful disease have been left to suffer for years by unbelieving professionals, bad advice and charities who are happy not to rock the boat and challenge them.
These sectors don't deserve the publicity. The people who help DO... 3/7
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...
2/ I thought 2 weeks off would fix it. It didn’t. After 6 weeks I was desperate to go back to work.
I held a fellowship in bio-nano-technology at a Scottish University. I tried a phased return starting with 1 hour per day. Twice. Each time I crashed and became more unwell.
3/ Since then I have been 95% housebound- it is rare for me to leave the house for more than 1 hour per week, and common not to leave the house at all for 3-4 weeks.
Still, I’m lucky – I’m not bed bound, like so many.
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.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
The selling of quick solutions is of a piece with disbelief in the medical (and general) community. Indeed, the fact that we use language such as "believe," the language of faith, speaks to more than the invisibility of the disease on our bodies & on conventional empirical tests.
There is a deeper aversion at work, which is facilitated by the word "fatigue," which people perceive as a transient state. "Fatigue" is something to be overcome, and our individualistic society cannot brook the idea that someone cannot master it w/o some flaw in our character.
But at some level I think people really *do get it: who hasn't had the nightmare of being unable to move in the face of a threat? These are *primal anxieties. I believe these deep-seated fears lie behind both medical/popular skepticism & the initiative to sell quick fixes.
.@_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.
#mecfs is an extremely debilitating condition as well as an incredibly common one. It is also usually lifelong (hitting early, but rarely lethal), leaving many unable to work for decades. Acknowledging our existence would be unbelievably expensive.