Thread by @AlisonSbrana

I created this reel to tell my story of viral-triggered #MECFS and why I fight for a national emergency declaration with @MEActNet for #MECFS and #LongCovid :
instagram.com/reel/Cisx1oeDG…

Here's a thread of each still photo telling my story, for accessibility purposes: 1/

https://twitter.com/MEActNet/status/1571916964594868226

3,087 days ago I got a virus and I never got better.

2/ #MillionsMissing #MECFS

Years later, I was diagnosed with #MyalgicEncephalomyelitis / Chronic Fatigue Syndrome. At that time (pre-pandemic), it was estimated up to 2.5 million Americans had ME/CFS.

3/ #MECFS

Now, millions more with #LongCovid have joined us. Current estimates show that half of Long COVID cases are #MECFS .

4/

My ME/CFS symptoms include: symptoms worsening after any activity, physical or mental. Extreme exhaustion. Severe daily headaches. Brain fog (difficulty thinking, remembering.) And...

5/ #PEM #PostExertionMalaise

- muscle pain daily
- recurring sore throat
- muscle weakness
- dizziness, racing heart and near fainting when upright ( #POTS )
- difficulty regulating body temperature
- sensitivity to light and sound

6/

Things I cannot do without severe flu-like symptoms for days afterward: physical or mental activities including...

7/ #MECFS #LongCovid

Things I cannot do without severe flu-like symptoms for days afterward:
- walk my dog for 15 minutes
- garden for 10 minutes
- travel, especially by plane
- fun outings like a concert, go out to dinner
- visit with friends and family

8/ #MECFS #LongCovid #StillSickStillFighting

Things I cannot do without severe flu-like symptoms for days afterward:
- go to the grocery store
- prep or cook meals
- laundry or cleaning - even for 10 mins.
- walk to my mailbox on some days
- shower on some days
- go to doctor appointments

9/ #MillionsMissing #MECFS

Things I can't do at all:
- walk long distances
- run, hike, bike, ski
- work full-time
- work part-time in-person
- work more than 10 hrs/wk from home
- any physical labor, even for fun (gardening etc)
- travel anywhere with a typical itinerary
- take my dog for a long walk
10/

Disability payments are very low -- average monthly payment (SSDI) this year is $1,358/month. Those who do get it are the lucky ones. Less than 1/3 of patients are approved on their first application.

11/

There are still no FDA-approved treatments for ME/CFS. We could have been prepared for the millions of Long COVID patients with adequate ME/CFS research. Our government chose not to.

12/ #NationalEmergency #MECFS #LongCovid #StillSickStillFighting

Millions of Americans are still sick and still fighting. Long COVID, ME/CFS, and associated diseases constitute a national emergency. Our government has failed to act with the urgency and resources needed to truly address this devastating problem.

13/ #NationalEmergency

You can join us in taking action to call for a national emergency declaration on the @MEActNet website: millionsmissing.meaction.net/protest2022/

ICYMI, here's the reel I created with my story. The music in the background is my husband's band Young Habitat, their song Fatigue which is in part about my experience living with #MECFS (and associated diseases)

instagram.com/reel/Cisx1oeDG…

The backstory on the song:

https://twitter.com/AlisonSbrana/status/1512583713585963008?s=20&t=vF11FYIkAqyiCORKeflEIA