Alison Sbrana Profile picture
Sep 19 16 tweets 11 min read
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/
3,087 days ago I got a virus and I never got better.

2/ #MillionsMissing #MECFS Alison is a white woman wit...
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 Alison is a white woman wit...
Now, millions more with #LongCovid have joined us. Current estimates show that half of Long COVID cases are #MECFS .

4/ Alison is a white woman wit...
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 Alison is a white woman wit...
- 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/ Alison is a white woman wit...
Things I cannot do without severe flu-like symptoms for days afterward: physical or mental activities including...

7/ #MECFS #LongCovid Alison is a white woman wit...
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 Alison is a white woman wit...
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 Alison is a white woman wit...
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/ Alison is a white woman wit...
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/ Alison is a white woman wit...
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 Alison is a white woman wit...
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 Alison is a white woman wit...
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…

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More from @AlisonSbrana

Sep 19
In case you don't know my story, I developed #MECFS #POTS etc. from a virus 8 years ago.

When the pandemic started, I reached out to @itsbodypolitic in May 2020 at the first indication of #LongCovid to help. I would never imagine the sheer number of people it would affect.
Now today, I have close friends from @itsbodypolitic at the #MillionsMissing protest in Washington DC who developed #MECFS from Long COVID. I am devastated that millions more people now suffer from this terrible disease which we have no treatment for.

I am angry because this suffering need to be addressed appropriately. The government failed to act before the pandemic, for the 2.5 million of us with #MECFS and now they have failed to act for the many, many more with #LongCovid who have joined us.

Read 5 tweets
Mar 18
Let's talk about peer support for #LongCovid –– I recently made this handout to help people experiencing Long COVID find a good community that fits their needs.

Here's the PDF via Body Politic's website (it has links embedded): wearebodypolitic.com/resources-for-…

A short thread 🧵 1/ A one-page handout titled Community Support for Long COVID w
First, some context: I created this because I have lived experience.

8 years ago I got a virus and never got better. I've been living w/ chronic illnesses many people with Long COVID are now being diagnosed with like #MECFS #Dysautonomia #MCAS and so on, for 8 years.

2/
I've been a part of SO many support groups in my 8 years of being sick/disabled. Online, text chats, whatsapp groups, social media, in-person, you name it––I've done it. I also used to work as a care coordinator/community health worker, so I've got perspective on the topic.
3/
Read 13 tweets
May 24, 2021
I want to emphasize how debilitating #LongCovid can be.

First slide: #LongCovid patients more likely to have difficulty w/ chores, stairs, 15 min walk, errands than cancer rehab patients.

I am familiar w/ this, bc I’m 7 years into disabling post-viral illness (#MECFS) myself
From a systems perspective: this means we need to look at the services provided to cancer patients, and provide that to #LongCovid patients, at a minimum.

Ask any #LongCovid patient in @itsbodypolitic and I can guarantee you that is not happening currently
If I could have it my way, I’d want every #LongCovid pt in the US screened for Medicaid HCBS eligibility. Difficulty w/ ADL’s is significant in #LongCovid and these patients need support at home to have a chance at properly pacing to support potential recovery
Read 7 tweets
Dec 4, 2020
Watching day 2 of @NIAIDNews #LongCovid workshop. Right now: breakout sessions. I'm watching the neuro breakout session, led by Dr. Komaroff. @ahandvanish is there representing #LongCovid patients with @itsbodypolitic. Tune in: videocast.nih.gov/livew.asp?live…
@NSU_INIM's Dr. Klimas spoke about early in the meeting about the history of #MECFS and challenges in developing diagnostic criteria for #MECFS without biomarkers, and the similarities and differences to #LongCovid. I felt represented by her discussion as a #PwME
@NSU_INIM's Dr. Klimas also emphasized the need for separating
- hospitalized COVID patients with organ damage that is causing neuro symptoms after COVID
vs.
- #LongCovid which typically is in non-hospitalized cases
Read 103 tweets
Dec 3, 2020
Going to try to pick up where @ahandvanish left off on live-tweeting today's NIH #LongCovid workshop

"We're really having an epidemic of this chronic critical illness and it deserves attention as well." - Dr. Terri Hough, OSU on pulmonary sequelae of #LongCovid.
GI/liver symptoms in hospitalized patients prevalence:
- Dr. Hashem El-Serag (Baylor)
Read 34 tweets
Aug 9, 2020
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
#MECFS #postCOVID
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets

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