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Janelle
@janwly
21 yrs experience as a #pwME. Science interest. Tweets about #MEcfs, other neglected diseases, disability, research, etc. Follow, RT not= endorsement. she/her
USAJoined August 2011

Janelle’s Tweets

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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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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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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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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Me: I can hardly breathe at all. I stand up to motion to or talk to the desk. I gasp that I can't breath with the last bit of air. The desk doesn't hear. Other patients in the wait room, some of whom look like they shouldn't be getting up: Get up and holler to the desk.
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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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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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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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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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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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#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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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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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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