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Discover and read the best of Twitter Threads about #mecfs

Most recents (14)
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
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Read 16 tweets
Oooh: this is your brain on #MECFS : up to four times the standard amnt of lactate. Remember that Nakatomi study and those lactate me vs fibro vs major depressive disorder vs... confirmation! Awesome, Younger. (1/4) #pwme @MEActNet #MECFS18
SO GLAD he included this too! Brain on fire: #pwme brains run hot. Usually about 1F diff— but sometimes as high as 103F! “This will make a person feel very sick,” he says... (2/4) #pwme @MEActNet #MECFS18
Positron electron tomography (PET) scan replicates older research to show same areas overactive. New, more effective markers mean better, more trustworthy results. (3/4) #pwme @MEActNet #MECFS18
Read 4 tweets
Jarred Younger up now. Neuroinflammation in #mecfs. We’ve all gotten inflammation diagnoses in the body (arthritis, e.g.) but never brain inflammation. Hard to diagnose! So how can we make that dx easier? (1/5) #pwme @MEActNet #MECFS18
Hard to measure inflammation in a living person? Must be non-invasive, must be through and examine the whole brain. (2/5) #pwme @MEActNet #MECFS18
Microglia — bottom right is in an inflammatory state. Releases cytokines that cause ‘sickness behavior’. It makes you feel awful: that’s its job! Slow down to recover. (3/5) #pwme @MEActNet #MECFS18
Read 6 tweets
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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
Imagine an experiment. You take a healthy person and put them in a bed. You tell them they’re not allowed to sit or stand up, at all. If they do, the next day they will be strapped to electrocution devices to stimulate pain, and keep awake long past exhaustion without knowing—
when they’ll be allowed to sleep. They will also have to cancel/ miss out on any activities they had scheduled for the next five days. They’re not allowed to move around too much, if they do, the above applies: Electrocution and sleep deprivation for an indefinite amount of time.
I wonder what they’d do, how they’d feel.
Read 12 tweets
.@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
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
#IIMEC13 - I've spent a week in London helping out at the @Invest_in_ME conference.

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
Read 7 tweets
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...
Read 9 tweets
The controversy about #MECFS is just an echo of the general reproducibility crisis in medicine and psychology. journals.plos.org/plosmedicine/a…
We cannot agree on the nature of an illness, if we don’t agree on how to make science.
Why is systematic bias, outcome switching, argument from ignorance, and causality inferred from correlation accepted in the BPS paradigm?
Read 4 tweets
Today is the 10th anniversary of the day that I became housebound with severe #ME. To mark the occasion here’s a thread:

10 years ago I came home from work unbelievably overwhelmingly exhausted. #mecfs #MillionsMissing #MyalgicE #meawarenesshour
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.
Read 12 tweets
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.
Read 18 tweets
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.
Read 7 tweets
.@_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.

independent.co.uk/news/long_read…
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.
Read 20 tweets
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