Matt Lazell-Fairman
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mfairma.bsky.social
Matt Lazell-Fairman
@mfairma.bsky.social
ME. Spouse w LC, ME. Writer, bread baker, daydreamer. Still waiting on fair funding and apology from HHS. Masking like someone’s life depends on it.
Pinned
It’s been five years since John Prine died of COVID-19. If you’re so inclined (and able — it’s long), here’s an essay I wrote about how his songs helped me accept a life with the debilitating, deeply marginalized chronic illness ME/CFS. 1/3
How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
It’s been a year since Prine died of COVID-19. His death made me reflect on what it means to be sick and how his songs helped me learn to…
m-lazell-fairman.medium.com
Reposted by Matt Lazell-Fairman
Its the final #wishlistwednesday before my tiny narrative game about living with #longcovid launches on steam.

Launching Monday for $1.99.
#indiegamedev #gamedev #indiegame #chronicfatigue

store.steampowered.com/app/4109440/...

Made with the support of deaf and disability arts Festival
It's Not You, It's M.E on Steam
A short narrative point-and-click about living with limited energy — and how even the smallest tasks can feel impossible.
store.steampowered.com
November 26, 2025 at 10:04 PM
Reposted by Matt Lazell-Fairman
Help us send 2,000 books to readers who are incarcerated this winter through our Books Not Bars program
Books Not Bars 2025 Holiday Campaign
BOOKS NOT BARS FOR THE HOLIDAYS Haymarket Books is committed to making our books available for free to people who are incarcerated. In an effort to support those inside who are dealing with the imm...
haymarketbooks.app.neoncrm.com
November 23, 2025 at 10:11 PM
Reposted by Matt Lazell-Fairman
An incredibly important read from our friend @seemiaroll.bsky.social

"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
Weakening the IDEA Threatens Millions of Disabled Americans Like Me
Ives-Rublee: Federal law made it possible for disabled students like me to go to school. Those opportunities may vanish for the next generation.
www.the74million.org
November 26, 2025 at 11:07 PM
Reposted by Matt Lazell-Fairman
If you're interested, this tribute to Alice Wong was written by one of the people who knew her best

www.thenation.com/article/soci...
A Tribute to an Oracle, Alice Wong
Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated.
www.thenation.com
November 26, 2025 at 11:18 PM
Reposted by Matt Lazell-Fairman
Unconscionable 🤬

An ICE victim shares their story
November 26, 2025 at 2:02 PM
Reposted by Matt Lazell-Fairman
On November 18, Massachusetts advocates gathered at the State House as they have, year after year, to beat back yet another proposal for involuntary outpatient commitment. Massachusetts is now one of only two states that don’t use specialized courts to mandate forced psychiatric treatment.
Massachusetts Advocates Resist Dystopian Involuntary Outpatient Commitment Bill
Massachusetts is now one of only two states that don’t use specialized courts to mandate forced psychiatric treatment.
buff.ly
November 26, 2025 at 6:30 PM
Reposted by Matt Lazell-Fairman
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
November 26, 2025 at 5:06 PM
Reposted by Matt Lazell-Fairman
Highlights from a 2006 BBC Inside Out segment about 20 yr old Claire Wade, bedbound with severe ME. She fell ill at 10 and lost her entire teenage years to the illness. She spent the last 6 yrs confined to bed, with only letters & emails to connect her to the outside world.
November 26, 2025 at 7:00 AM
Reposted by Matt Lazell-Fairman
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.

He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
November 26, 2025 at 9:33 AM
Reposted by Matt Lazell-Fairman
Newborns cannot get vaccinated for whooping cough until they are two months old.

So it is up to adults who plan to be around newborns to get those Tdap shots—and new parents need to encourage family members who plan to be around a newborn to get Tdap shots, too.
November 25, 2025 at 7:55 PM
Reposted by Matt Lazell-Fairman
Yeah 😔 I know I’m not worthless, but I also know society sees me as worthless & that has real consequences
sick people should be able to count on social programs for care so we don't have to put ourselves through self-esteem shredding relationships just to get sufficient help

I feel so incredibly worthless today and am questioning why I'm even on this planet, and while part of me knows--
November 25, 2025 at 6:39 AM
Reposted by Matt Lazell-Fairman
sick people should be able to count on social programs for care so we don't have to put ourselves through self-esteem shredding relationships just to get sufficient help

I feel so incredibly worthless today and am questioning why I'm even on this planet, and while part of me knows--
November 24, 2025 at 8:16 PM
Reposted by Matt Lazell-Fairman
An incredibly moving post:

"I have spent the vast majority of my 20s in bed and alone in the darkness and silence"
October 10, 2025 at 6:06 PM
Reposted by Matt Lazell-Fairman
I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.

substack.com/home/post/p-...
November 24, 2025 at 11:30 PM
Reposted by Matt Lazell-Fairman
Breaking: Viola Ford Fletcher, the oldest living survivor of the 1921 Tulsa Race Massacre, has died. She was 111 years old
Viola Ford Fletcher, the oldest living survivor of the 1921 Tulsa Race Massacre, has died
Viola Ford Fletcher, the oldest living survivor of the 1921 Tulsa Race Massacre, has died. She was 111 years old.
www.whatimreading.net
November 24, 2025 at 8:45 PM
Reposted by Matt Lazell-Fairman
Call to action: Congress has extended Telehealth until January 31,2026.

This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.

Call now using our call script: www.meaction.net/telehealth

#Telehealth #PwME #MECFS #LongCovid
November 19, 2025 at 9:27 PM
Reposted by Matt Lazell-Fairman
I was reminded of Anne today. I saw that it's almost 8 years since she died.
I read her last words again.

I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid
Anne Ortegren
Widermind offer advanced technical training in mobile telecommunications, mainly GSM, GPRS and 3G such as UMTS. Introducing you to future technologies through our highly effective training program, yo...
lobel.nu
November 22, 2025 at 7:58 PM
Reposted by Matt Lazell-Fairman
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Reposted by Matt Lazell-Fairman
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.

I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time

www.youtube.com/watch?v=y1rS...

#MEcfs

1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 12:01 AM
Reposted by Matt Lazell-Fairman
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”

Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 21, 2025 at 3:56 PM
Reposted by Matt Lazell-Fairman
We are up to 688 LoCITT participants!

If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.

We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 21, 2025 at 7:59 PM
Reposted by Matt Lazell-Fairman
This seems like a crazy important story that is getting very little coverage here - especially if it destabilizes the regime
'Iran’s capital must be moved because the country “no longer has a choice,” President Masoud Pezeshkian said on Thursday in remarks carried by state media, warning that severe ecological strain has made Tehran impossible to sustain'

#Iran 🇮🇷
Iran president says capital move now a necessity as water crisis deepens
Iran’s capital must be moved because the country “no longer has a choice,” President Masoud Pezeshkian said on Thursday in remarks carried by state media, warning that severe ecological strain has mad...
www.iranintl.com
November 21, 2025 at 4:37 PM
Reposted by Matt Lazell-Fairman
I've been surprised to see how many Long COVID trials focus on exercise & how few measure PEM.

Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org

"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"

thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 4:47 PM
Reposted by Matt Lazell-Fairman
THREAD: Judge Ellis is the first federal judge to review extensive body cam video of DHS's actions in Chicago. She finds that DHS *repeatedly* misled the public and made claims that were disproven by agents' own videos.

I'll go through some of the most egregious ones here.
November 20, 2025 at 11:04 PM
Reposted by Matt Lazell-Fairman
There should be infinitely more interest in this medical mystery.

How many doctors can even name the phenomenon described below?

I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)

#MedSky
November 20, 2025 at 8:13 AM