Janelle

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

[Janelle @janwly]

NIH is failing #pwME. We need urgent action. @NINDSdirector 's letter of reply to @MEActNet is #NotEnough4ME. Millions of people around the world with #MyalgicE need you to step up and do better, faster.

[The Guardian @guardian]

For those in US, this is the equivalent of how big #AustralianFires are

Use our interactive #ausfires map to compare anywhere https://t.co/LxLZlEQgpt

#bushfirecrisis #AustraliaBurns #AustralianBushfires #BushfireEmergency #bushfiresAustralia #AustraliaBurning #AustraliaFires

[Janelle @janwly]

@JulianCastro Thank you for running. You are the best candidate in my opinion.

[Janelle @janwly]

@NINDSdirector @NIH My academic advisor recommended I apply to MD/PhD school.

I got ME and couldn't get to the educational point of applying. There's no treatment, and it's thought to affect more women.

There are also other neglected diseases which affect more women or other marginalized groups.

[Janelle @janwly]

@NINDSdirector @NIH I suggest that you take a look at your top directors. They are half white men.

Maybe start with diversity the place you have the most influence.

[Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu]

Why “You don’t let your #disability stop you” is nonsense - via @smedian_network #Disabied #Spoonies #InvisibleIllness #ChronicPain https://t.co/7MqNG00zpF

[Janelle @janwly]

@JanneReike I am not sure I can accept the title queen, but I appreciate the sentiment and thank you for being encouraging.

[Janelle @janwly]

@JanneReike I am glad I could help put your thoughts into words. Sorry it's rough.

[davidtuller @davidtuller1]

My piece for STAT about the Lightning Process study. Please leave comments on STAT after the article! https://t.co/0fq5hAQ1uj

[Janelle @janwly]

@MikeBroderickVO @mattbc SSI is a program that adds to whatever income you might have, but your total income won't exceed program levels.

So if your SSDI is less than $750 and you aren't getting informal help w/ housing or food from family, you could get both. The avg SSI portion for this is abt $250.

[Derya Unutmaz, MD @Derya_]

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!

[Janelle @janwly]

@ParkerMolloy It's ok. They might have unfollowed, but I followed. It's a good hill.

[Janelle @janwly]

@LeftistAutist @slooterman @squidlarkin I could, however, see exclusion from medical care as a social problem (even social barriers for researchers to study my disease).

[Janelle @janwly]

@LeftistAutist @slooterman @squidlarkin I've said this to emphasize how different people experience disability differently. I could have been wrong about the model, though.
Some people don't want medical treatment. Some people do.
Even with enough adaptive equipment & inclusion, I would still need medical treatments.

[nico (perpetually lifeless) 🦥 @unicornthorn]

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!

https://t.co/N3igY4t8AC

[Janelle @janwly]

@Lilysea I know, I'm a little scared what could have happened.

[Janelle @janwly]

#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

[Janelle @janwly]

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

[Janelle @janwly]

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