Thread by @Steve_Bellan

2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

1/

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

2/

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

3/

Meanwhile, after my Jan 2018 onset symptoms quickly evolved

First, crushing fatigue. Then a tingly sensation on my scalp

I couldn't stand or even sit for long

Then, more than fatigue.
EXERTION INTOLERANCE
Small amounts of physical exertion caused me to crash, hard

4/

Friends told me not to worry, humans are RESILIENT.

But I had become FRAGILE.

Lifting a pot or walking for 5 min could leave devastating days of worsened symptoms in their wake.

I tried to rest while moving as much as tolerated to maintain condition. I got worse.

5/

3mos in, the 24/7 headache began 🤯

A vice around bridge of my nose/forehead

A stabbing 🗡️ sensation at the top of my head when I SPOKE, READ, WROTE.

Extreme light/sound sensitivity 🕶️ 🎧

9mos in, only tolerated LISTENING to SPEECH for few min

6/

Barriers formed between me and

info needed to learn about my disease,
healthcare providers,
friends and family.

2019-2021, I went through long stints of only tolerating a few hundred words per day, spoken or written, expressive or receptive.

I became reliant on my 🦼

7/

Some doctors were dismissive. Normal tests meant I was healthy. They suggested I was depressed.

A cardiologist slapped me on the cheek like I was his grandson and told me to cheer up.

8/

Some doctors were empathetic but frank. They could not help me.

Some saw liability in my severity. Two mailed formal letters 📜 stating their refusal to treat me after the 1st appointment.

9/

Healthcare was becoming inaccessible with #MECFS.

1 amazing medical assistant befriended me. She accommodated my communicative disability. We exchanged voice msgs (I recorded in bursts) & she relayed my msgs to the doc. When at my worst, we had entire emoji conversations

10/

Meanwhile, my 🏡 was secretly falling apart. By the time visible leaks sprung, decayed studs began to protrude thru drywall

#JOMAConstruction screwed up beyond belief. Numerous code violations. They knew of the worst drainage defect but never fixed it. They knew I was sick

11/

Water damage mold (many species) blanketed areas beside and underneath the bed in which I had spent most of the last 2 years.

Incl Aspergillus versicolor. @NIOSH studies show neurotoxicity 👇🏻
pubmed.ncbi.nlm.nih.gov/34098774/

12/

Eventually, I accumulated diagnoses. A cluster of overlapping comorbidities that has now been identified as being COMMON but overlooked, underresearched, stigmatized.

#MECFS #POTS #EDS #MCAS #MillionsMissing

13/

I was diagnosed with a #hypermobile #connectivetissuedisorder #EDS
&
an immune hyperreactivity disorder #mastcellactivationsyndrome

After prolonged #moldexposure, #mastcells in my #connectivetissue were now stuck in overdrive, releasing inflammatory molecules

14/

In ppl w a #connectivetissuedisorder like #EDS, a major inflammatory insult can

1. damage ligaments at the craniocervical junction
→ #craniocervicalinstability = loose skull repeatedly bashes brainstem

2. tighten the band tying spinal cord to tailbone
→ #tetheredcord

15/

#craniocervicalinstability & #tetheredcord wreak havoc on the body.

Severe cases may require surgery.
Severe cases may be people stuck in dark rooms, borderline nonverbal.

Unlike many, I had enough support to be diagnosed & treated
thezebranetwork.org/craniocervical…

16/

Nov 2021: My skull was fused to my top 2 vertebrae to protect my brainstem from my loose skeleton.
#craniocervicalfusion peri-op XR 👇🏻

Jan 2022: My #filumterminale (connective tissue band tying spinal cord to tailbone) was cut ✂️ to detether my spinal cord

17/

I am remarkably improved but far from 100%

Pre ➡️ Post op
<100 steps/day ➡️ 2-5K steps/day
300-1500 words/day ➡️ 30-60min converse/write/read before rest

No longer reliant on 🦼 🕶️ 🎧

24/7 headache & leg pain remain. #PEM remains. But surgical improvements may continue 🤞🏻

18/

#pwME lose so much, including beloved careers.

I lost an #IDepi career I loved, just before #COVID emerged. After being walled off from information by #MECFS, re-engaging is strange & overwhelming.

I'm grateful to regain health and to reconnect w community, new & old

19/

#LongHaulers share much with #pwME

It's heartbreaking 💔 to see #LongCovid similarly minimized. Conveniently swept under the rug.

EACH #COVID surge disables countless more, with minimal available treatment

Death isn't the only severe outcome

20/

https://twitter.com/edyong209/status/1433044687946932224?s=20&t=QgzL2BOkoevRAPbhM73pCA

It's been inspiring to catch up on incredible advocacy & science on complex chronic disease by @OpenMedF @polybioRF @MEActNet @PlzSolveCFS @MEAssociation @TheEDSociety @patientled @itsbodypolitic

#LongCovid #MECFS #POTS #MCAS #EDS #NEISvoid

21/

Neglect of the #MillionsMissing with #MECFS #LongCovid & other complex chronic disease results from systemic problems with healthcare systems, medicine, health research.

Change requires awareness

#MedTwitter #EpiTwitter

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solvecfs.org/me-cfs-long-co…