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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

 USA
Joined August 2011
  • Tweets10.4K
  • Following1.4K
  • Followers1.5K
125Media
Photo by Janelle (@janwly)Photo by Janelle (@janwly)Photo by Janelle (@janwly)Photo by Janelle (@janwly)Photo by Janelle (@janwly)Photo by Janelle (@janwly)Photo by Janelle (@janwly)
For those in US, this is the equivalent of how big #AustralianFires are Use our interactive #ausfires map to compare anywhere theguardian.com/australia-ne… #bushfirecrisis #AustraliaBurns #AustralianBushfires #BushfireEmergency #bushfiresAustralia #AustraliaBurning #AustraliaFires
Image from The Guardian (@guardian)
Image from The Guardian (@guardian)
Image from The Guardian (@guardian)
Image from The Guardian (@guardian)
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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=2OJDo…
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My piece for STAT about the Lightning Process study. Please leave comments on STAT after the article! statnews.com/2019/12/13/bmj-…
BMJ should retract flawed research paper on chronic fatigue syndrome

BMJ should retract flawed research paper on chronic fatigue syndrome

The BMJ imprimatur should serve as something more than an advisory that readers have to "reach their own conclusions" about the integrity of research published in the organization's journals.

statnews.com
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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! @twitchyspoonie 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! gofundme.com/f/jaleesa039s-d…
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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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Replying to @unicornthorn @slooterman
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/cyb… Both Jillian & @ashleyshoo will be on my @DisVisibility podcast in a few weeks talking all about cyborgs too!
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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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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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Check out this excellent essay by @annalandre 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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THREAD: Here is my analysis of NIH funding for ME research in 2019 (1/6) occupyme.net/2019/11/07/nih-…
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Replying to @susan_mecfs @NIH
Thank you for sharing @susan_mecfs! It's so helpful to have people like you with an insider's understanding confirm that it would be easy for @NIH @NINDSdirector @NIHDirector to meet the extremely reasonable and urgently needed demands of us patients & #MEAction. #NotEnough4ME
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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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Myalgic Encephalomyelitis is a disease affecting millions, but the @NINDSdirector won't fund it at a meaningful level. I lost two friends to this disease. It's time to speak up, fund, and research. @MEActNet
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New: Free full text: A systematic review of natural killer cells profile and cytotoxic function in #MyalgicEncephalomyelitis /#ChronicFatigueSyndrome systematicreviewsjournal.bio… #MEcfs #CFS #MyalgicE
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You can read the letter from Koroshetz with our analysis at the link above. We put his statements into context with the reality of what is happening with the ME crisis. We clearly show why this plan is #NotEnough4ME. Join in our video action today! meaction.net/2019/11/17/nih-…
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Dr. Koroshetz doesn’t get it! #pwME are #FightForOurLives yet ⁦@NINDSdirector⁩ refuses to fund research to end the #Myalgic health crisis. This in NotEnough4ME & we won’t stop fighting until our demands are met! Sign/share ⁦@MEActNet⁩ petition: bit.ly/2ql3Xk5
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Dr. Koroshetz doesn't get it! #pwME are #FightingForOurLives yet @NINDSdirector refuses to fund research to end the #MyalgicE health crisis. This is #NotEnough4ME & we won't stop fighting until our demands are met! Sign/share @meactnet petition: bit.ly/2qI3Xk5
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