NIH is failing #pwME. We need urgent action. 's letter of reply to is #NotEnough4ME. Millions of people around the world with #MyalgicE need you to step up and do better, faster.
Janelle
@janwly
USAJoined August 2011
Janelle’s Tweets
For those in US, this is the equivalent of how big #AustralianFires are
Use our interactive #ausfires map to compare anywhere theguardian.com/australia-news
#bushfirecrisis #AustraliaBurns #AustralianBushfires #BushfireEmergency #bushfiresAustralia #AustraliaBurning #AustraliaFires
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Why “You don’t let your #disability stop you” is nonsense - via @smedian_network #Disabied #Spoonies #InvisibleIllness #ChronicPain lnk.xyz/SkErwv0pN?aduc
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If your institution has any Elsevier subscriptions, consider telling your librarian that these subscriptions are no longer needed:
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When I tweeted about Elsevier, someone from 'RELX' replied with Elsevier spam.
Elsevier is part of RELX, formerly called Reed Elsevier.
RELX, as 'Lexis-Nexis', have open contracts with Immigration & Customs Enforcement (ICE) for database analytics and information services.
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My piece for STAT about the Lightning Process study. Please leave comments on STAT after the article!
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I’d like the thank the #MECFS community for the overwhelmingly positive feedback to our recent pre-print on BioRxiv. We feel our findings completely support major & serious functional disruption in ME/CFS patients, who suffer greatly yet was neglected & dismissed for so long!
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Replying to
Some foods, especially fruits and veggies that express juice or oil into the air when cut or peeled, can cause allergies or sensitivities just from inhaling the component you’re sensitive to. It’s the same as having a reaction to pollen or pet dander!
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#Doctors #nurses should take this advice
#PatientsAreNotFaking. People die due to medical neglect. Dehumanizing and labeling us is a deadly game to play. t.co/O8Er3cNCVX
This Tweet is unavailable.
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Ever wondered how women scientists were erased from the records?
Science historian Margaret Rossiter once asked whether there were ever women scientists. Perhaps it was the answer—no—that propelled her to discover the treatment of women in science. THREAD
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Hey friends! is only $650 from her fundraising goal! Teeth are ridiculously important & it's absurd that it's considered separate from other healthcare when dental issues can KILL YOU, but here we are! So please boost & donate if you can!
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My complaint is answered by "according to your chart, everything is fine".
My chart says someone checked on my every 15 minutes (lie), my skin was pink all night (lie), and they gave me O2 only because of my sis (lie).
#PatientsAreNotFaking
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Facility: Ignores me for hours
Me: stops breathing two more times.
Sister: gets help when she sees my lips turn blue
Staff: panic over SPO2, give me oxygen
2nd Doc: writes a "prescription" for an OTC on an Rx pad, "diagnoses" something radiology ruled out.
#PatientsAreNotFaking
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Me: gradually recovers to breathing ok
Desk: comes with a wheelchair
Doctor: confused because I came in with abdominal pain and now say can't breathe. Says I "had a symptom & panicked".
Lady, I been having symptoms since I was 8. Most inept Dx I ever heard.
#PatientsAreNotFaking
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#PatientsAreNotFaking
Me: collapse into my chair
Desk: glances up, says they'll come when they come
Me: not breathing much
My sister: Goes to the desk and insists they come.
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#PatientsAreNotFaking
Me: getting more seriously short of breath
Me: keeps trying to read. There are other patients. They'll get to me when they get to me.
Me: No longer concerned about abdominal pain. There's a tight band of pain around my chest and I can't breathe well.
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#PatientsAreNotFaking
Okay so let's talk about "fake respiratory distress".
Me, to immediate care center: I have a severe abdominal pain
Desk: Please wait
Me: Okay, np
Me: reads e-book
Me: starts to feel short of breath
Me: this is normal, reads some more
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I have endometriosis. When I have an ovarian or uterine cyst burst, I have basically just....stopped trying to seek any medical relief for the pain because I've been humiliated by enough ER nurses & doctors to know it's not worth it #PatientsAreNotFaking
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There is no such thing as being ‘deserving’ or ‘undeserving’ of medical attention, we should all be treated humanely.
#PatientsAreNotFaking
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I would encourage anyone working in healthcare to read the stories of #PatientsAreNotFaking. Our hidden curriculum in medicine often teaches us to discount patient symptoms. It’s dangerous and unethical. Listen to your patients.
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Jillian Wiese is someone who writes about cyborgs and she has a book of poetry out now, Cyborg Detective (the book cover is so fabulous) boaeditions.org/products/cybor
Both Jillian & will be on my podcast in a few weeks talking all about cyborgs too!
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The other thing that bothers me about 'special needs' is that it contributes to the idea of disability accommodations and inclusion as some kind of favour, some undeserved extra - so which budget is raided first, every time, because politicians know they'll get away with it?
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“The logic of the connection between ‘special needs’ and ‘special [segregated] places’ is very strong – it doesn’t need reinforcement – it needs to be broken.”
startingwithjulius.org.au/he-aint-specia
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If accessibility information is not available without having to make additional contact, it's not accessible.
If a Disabled person cannot access your services without enlisting a whole other human being to do it when it's unnecessary, it's not accessible.
#EverydayAbleism
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All of us who have two or more illnesses spend an inordinate amount of time informing our physicians that we had one illness, then got another.
It’s not unusual. Stop acting as if this two-illness-situation must somehow be apocryphal.
*Pay attention.*
#PatientsAreNotFaking
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Reasons not to cheerfully assume students have plans for the upcoming holiday:
- cost of going home
- estrangement from family
- risk of not being able to re-enter the US (int’l students)
- the ‘holiday’ celebrates genocide/displacement/dispossession of their people
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People incarcerated in West Virginia prisons will soon be charged $3 an hour to read books and $15 an hour for video visitation with their families.
Prisoners in West Virginia are paid between 4 and 58 cents an hour for their labor.
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A few weeks ago, I met up with around 15 people with chronic illnesses (everything from Crohn's to genetic Ehlers-Danlos Syndrome). EVERYONE was initially gaslighted by multiple doctors and told they were just stressed, depressed etc.
#dkpol #sundpol #WomensHealth #RareDisease
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I've interviewed 60+ folks with dx'ed chronic illness about their entire health histories. I am not exaggerating when I say that every. single. one. of those patients was implicity or explicitly accused of faking before getting a dx.
#PatientsAreNotFaking
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#ThingsIHateBeingToldToDo
Cure my own disease by doing something that makes me worse (exercise).
Cure my own disease by doing something that doesn't fix the disease and may/may not improve individual symptoms (change my diet, change my sleep, etc.)
#chronicIllness #MyalgicE
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#ThingsIHateBeingToldToDo:
Find my own researchers and my own funding for my own common, neglected, serious disease.
From my bed. While qualifying for Medicaid.
#NotEnough4ME
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I've interviewed 60+ folks with dx'ed chronic illness about their entire health histories. I am not exaggerating when I say that every. single. one. of those patients was implicity or explicitly accused of faking before getting a dx.
#PatientsAreNotFaking
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Check out this excellent essay by if you want to learn about the very real structural ableism disabled people face using #Medicaid long term services & supports 👇👇👇
#CripTheVote #SuckItAbleism #HCBS #Olmstead #LTSS #CommunityLiving
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I’m proud and excited to share that I got to write an essay for @DisVisibility! This is my first published long-form piece and I’m so thankful for the opportunity to share a story that affects thousands of Americans like me. #CripTheVote disabilityvisibilityproject.com/2019/11/19/ame
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THREAD: Here is my analysis of NIH funding for ME research in 2019 (1/6)
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Thank you for sharing ! It's so helpful to have people like you with an insider's understanding confirm that it would be easy for to meet the extremely reasonable and urgently needed demands of us patients & #MEAction. #NotEnough4ME
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This admin doesn’t have our best interests at heart. We’re used for brochures/statistics, but not given respect. They have yet to meet demands the black students from 2014 posed. It’s almost 2020. Please help us hold them accountable so we can finally see a change for the better.
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We invite caregivers and patients to visit our resources page to find a variety of helpful information: bit.ly/2CXryjE
Parents can also find useful information and resources to help their child with ME/CFS here: bit.ly/2NYdZ9J
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#MECFS be like:
Person (on 18th Nov 2019): when are you free to meet?
Me: looks in empty diary.
Me: mentally calculates showers, meals, recovery time, rest in prep time, weather, terrain and transport conditions for the foreseeable future.
Me: 2.30pm June 18th, 2020?
Person: 😳
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chronic pain is when you experience pain that is worse than you ever imagined pain could be, but it's not important enough to bring up with a doctor
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Found out today that I will no longer have my job starting January 1st. If you have any leads for remote work in digital content production (videos, social media, writing, editing), please point me in that direction! I'll be looking for work on my end, too. Thanks❤️
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Myalgic Encephalomyelitis is a disease affecting millions, but the won't fund it at a meaningful level. I lost two friends to this disease. It's time to speak up, fund, and research.
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Both Forgotten Plague & Unrest made it onto Bill Gates' watch list thanks to all the ME/CFS warriors out there! The other recommendations don't come close to the importance of these. Click here to flag them & add a comment!
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