Mastodawn

Please share the above at conferences, health systems and clinics — so clinicians and researchers learn about these devastating impacts and can help patients

More people need to realize these are severely disabling and sometimes life-ending conditions if left undiagnosed, untreated and unfixed

Clinicians #MedStadon must build on patient-led research and seek out existing guidelines from the few clinicians knowledgeable, instead of waiting for medical institutions to tell them what to do

2/2 🧵

Emily Johnson Aug 8, 2025

If you want to learn more about the recent @decodemestudy Myalgic encephalomyelitis study that found 8 genes associated with ME patients, join this free webinar on August 14 at 10:30 AM EST: https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration

#pwME #MECFS #MedStadon

Welcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.

Zoom

Emily Johnson Aug 8, 2024

Profoundly upsetting to confront how much time, money, energy and wellness I lost pursuing “migraine” treatments which all failed as intracranial hypertension issues caused and/or triggered nearly all of my head pain, yet doctors didn’t investigate it for 20 years #medstadon

Show thread

Emily Johnson Sep 29, 2023

People can also donate here:
Venmo: Emily_rj
CashApp: $ERoseJ
PayPal: emilyrjohnson

I’ll add any cashapps donations to my GFM fall neurosurgeries goal, ty 💜 https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

#MutualAidRequest #MillionsMissing #EDS #pwME #LongCovid #MedStadon #MESpine #POTS #MCAS #Mito

Show thread

Emily Johnson Sep 28, 2023

I have an infection so no energy to do many tweets like I have raising funds for others

$22K only covers neurosurgery care now — I may need more neurosurgery next year

Pls share if you can’t donate! #LongCovid #DisabledSocial #MedStadon #EDS #pwME #POTS #MCAS #LongCovid #MESpine https://www.gofundme.com/f/help-emily-get-medical-care?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Brian Dear Aug 7, 2023

A question for all the #medical #doctors out there:

Got an x-ray for a tennis elbow issue and I was surprised that the technician did not offer me any lead radiation protection thingies to put on my side and head while the elbow x-rays were taken. I inquired, and she said, "oh, we don't offer them anymore. we found that the lead actually keeps the radiation in the body longer" and I'm thinking, WTF?

Since when? Is there a peer-reviewed journal article on that?

#medstadon #radiology

Show thread

Emily Johnson Jul 28, 2023

🚨 So this is a call to neurologists, movement disorder specialists and researchers — if post-viral impacts on dystonia is your thing, please DM me

I need remote accessible care to give me (and my specialists) a better idea of what I’m dealing with and what to do #MedStadon 4/4

Emily Johnson Jul 28, 2023

At times I think about how no neurologists have been very concerned my full-body sleep seizures over at least 14 years

It’s not epilepsy so no one is interested, I don’t know how often it occurs nor extent of damage, and talking about it stigmatizes me everywhere #MedStadon 1/4

Show thread

Emily Johnson Jul 28, 2023

But because my EEGs are normal, it’s not epilepsy, my case hasn’t fit any neurologists’ clinical or research agendas

Loved ones and doctors just assume some other doctor (or a partner or boss) will fall out of the sky supportive enough to care — no dice #MedStadon 3/4

Show thread

Emily Johnson Jul 28, 2023

My best guess is hypogenic paroxysmal dystonic seizures: happens during NREM, have normal EEG, features night terrors — all present in my case

It makes sense that’s it’s an extension of my #dystonia, not just neurospinal and neuroimmune damage — still scary #MedStadon 2/4