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
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
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
Reposted by Matt Lazell-Fairman
So 💔 & angry… that Alice is gone, Teen Vogue is gone, community care is all but gone, but dangerous infectious diseases are still being given red carpet treatment. The disability, Long Covid, & ME communities keep losing people, & it doesn’t have to be this way. We can do better. We must.
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
COVID Isn’t Going Anywhere. Masking Up Could Save My Life.
"When I am in public spaces and see most people unmasked, I feel like an expendable burden not worth saving."
www.teenvogue.com
November 16, 2025 at 12:22 AM
So 💔 & angry… that Alice is gone, Teen Vogue is gone, community care is all but gone, but dangerous infectious diseases are still being given red carpet treatment. The disability, Long Covid, & ME communities keep losing people, & it doesn’t have to be this way. We can do better. We must.
Reposted by Matt Lazell-Fairman
web.archive.org/web/20241122...
Alice Wong's Teen Vogue articles were archived before their removal, for anyone looking.
Alice Wong's Teen Vogue articles were archived before their removal, for anyone looking.
Disability Visibility - Latest
Get the latest on Disability Visibility from Teen Vogue. Find articles, slideshows and more.
web.archive.org
November 15, 2025 at 9:01 AM
web.archive.org/web/20241122...
Alice Wong's Teen Vogue articles were archived before their removal, for anyone looking.
Alice Wong's Teen Vogue articles were archived before their removal, for anyone looking.
Reposted by Matt Lazell-Fairman
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
COVID Isn’t Going Anywhere. Masking Up Could Save My Life.
"When I am in public spaces and see most people unmasked, I feel like an expendable burden not worth saving."
www.teenvogue.com
November 15, 2025 at 5:09 PM
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
Reposted by Matt Lazell-Fairman
This is a wonderful and right-on-time conversation. I especially loved the recognition that fear clarifies what we value that we don't want taken away, and the invitation to connect with our fear, without shame, to let it show us what we love, and then to "think about possibility from that space."
Aaron Goggans and I talk about what happens when movements start running on empty—how trauma, burnout, and dysregulation can shape our organizing, and what it takes to sustain ourselves and each other in a moment of crisis and emergency. I found this conversation so helpful, and I hope you will too.
Burnout Is Not Inevitable: Building Movements That Can Hold Us
“Care really should be at the center of our strategy, of our analysis, and of our practice,” says Aaron Goggans.
truthout.org
November 15, 2025 at 3:59 AM
This is a wonderful and right-on-time conversation. I especially loved the recognition that fear clarifies what we value that we don't want taken away, and the invitation to connect with our fear, without shame, to let it show us what we love, and then to "think about possibility from that space."
Reposted by Matt Lazell-Fairman
Refugees & asylum seekers are largely a vulnerable, traumatised & disadvantaged group of people so to keep demonising & scapegoating them for political gain is disgusting & despicable. The end doesn’t justify this punching down means & in any case the end here seems to be the propaganda itself.
November 15, 2025 at 1:49 PM
Refugees & asylum seekers are largely a vulnerable, traumatised & disadvantaged group of people so to keep demonising & scapegoating them for political gain is disgusting & despicable. The end doesn’t justify this punching down means & in any case the end here seems to be the propaganda itself.
Reposted by Matt Lazell-Fairman
One way I have found to mourn someone is to set up a monthly sustaining donation to a mutual aid effort they cared about. If you can join me in honoring Alice Wong, @sfdirewolf.bsky.social with a sustaining donation today, please do. Thank you Alice, and I will not let the bastards grind me down.
November 15, 2025 at 12:34 PM
One way I have found to mourn someone is to set up a monthly sustaining donation to a mutual aid effort they cared about. If you can join me in honoring Alice Wong, @sfdirewolf.bsky.social with a sustaining donation today, please do. Thank you Alice, and I will not let the bastards grind me down.
Reposted by Matt Lazell-Fairman
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
November 15, 2025 at 6:12 AM
‘Death remains my intimate shadow partner. It has been with me since birth, always hovering close by. I understand one day we will finally waltz together into the ether. I hope when that time comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, & full of love.’
—Alice Wong
—Alice Wong
Reposted by Matt Lazell-Fairman
Our beloved Alice Wong has joined the ancestors. It was one of the great honors of my life to call Alice my friend, co-author & co-conspirator. She was a true genius, a force of nature the likes of which the world has never seen before. I love you, Alice, and am equal parts grateful and devastated
November 15, 2025 at 6:09 AM
Our beloved Alice Wong has joined the ancestors. It was one of the great honors of my life to call Alice my friend, co-author & co-conspirator. She was a true genius, a force of nature the likes of which the world has never seen before. I love you, Alice, and am equal parts grateful and devastated
Reposted by Matt Lazell-Fairman
I don’t want to formulate words yet, but my friend Alice Wong, @sfdirewolf.bsky.social of the Disability Visibility Project, has passed.
Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Alice Wong on Instagram: "ID: Yellow background with black text "This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the time of her passing. Hi everyone, it ...
423 likes, 73 comments - alicatsamurai on November 14, 2025: "ID: Yellow background with black text "This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the t...
www.instagram.com
November 15, 2025 at 5:57 AM
I don’t want to formulate words yet, but my friend Alice Wong, @sfdirewolf.bsky.social of the Disability Visibility Project, has passed.
Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Here are the words she left behind:
www.instagram.com/p/DREMDNBjnq...
Reposted by Matt Lazell-Fairman
🧵 Rest in power, Alice Wong. @sfdirewolf.bsky.social A trailblazer, a fierce advocate, and a relentless voice for disability rights. Her work changed the landscape for so many. /1
November 15, 2025 at 7:52 AM
🧵 Rest in power, Alice Wong. @sfdirewolf.bsky.social A trailblazer, a fierce advocate, and a relentless voice for disability rights. Her work changed the landscape for so many. /1
“National Decade Against Post-Infectious Diseases” is just such a lovely phrase to hear. Can’t even express what it means as pwME and in these times.
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet
Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.
www.spiegel.de
November 14, 2025 at 9:42 PM
“National Decade Against Post-Infectious Diseases” is just such a lovely phrase to hear. Can’t even express what it means as pwME and in these times.
Reposted by Matt Lazell-Fairman
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet
Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.
www.spiegel.de
November 13, 2025 at 11:18 PM
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
Reposted by Matt Lazell-Fairman
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern
Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.
www.zeit.de
November 14, 2025 at 6:50 AM
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Reposted by Matt Lazell-Fairman
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
November 14, 2025 at 3:10 PM
Big step for people with #mecfs & #LongCovid in Germany: the BMFTR announces a “National Decade on Post-Infectious Diseases” with long-term research funding and a focus on diagnostics & treatments. #mecfsresearch #research
Reposted by Matt Lazell-Fairman
Rachel Riggs has a gorgeous, delicious new cookbook out — and I got to have a really interesting conversation with her about it. It'll help you make wonderful food even when one friend is gluten free and one is dairy free and one doesn't eat nightshades... jrehmeyer.substack.com/p/deliciousn...
Deliciousness, Born from the Fire of Chronic Illness
Rachel Riggs's beautiful new cookbook
jrehmeyer.substack.com
November 13, 2025 at 4:29 PM
Rachel Riggs has a gorgeous, delicious new cookbook out — and I got to have a really interesting conversation with her about it. It'll help you make wonderful food even when one friend is gluten free and one is dairy free and one doesn't eat nightshades... jrehmeyer.substack.com/p/deliciousn...
Reposted by Matt Lazell-Fairman
SciAm: ''Mono' Virus May Also Cause Lupus'
'Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus'
www.scientificamerican.com/article/the-...
'Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus'
www.scientificamerican.com/article/the-...
The Virus That Causes Mono May Also Cause Lupus
Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus
www.scientificamerican.com
November 13, 2025 at 6:29 PM
SciAm: ''Mono' Virus May Also Cause Lupus'
'Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus'
www.scientificamerican.com/article/the-...
'Early findings indicate that Epstein-Barr Virus may also cause the autoimmune disease lupus'
www.scientificamerican.com/article/the-...
Reposted by Matt Lazell-Fairman
TODAY🚨 is the Senate vote on HB 8002 - CT's housing bill in the special session.🏘️ Contact your State Senators to share how CT needs affordable, safe and sustainable homes! www.cga.ct.gov/asp/menu/cga...
November 13, 2025 at 3:00 PM
TODAY🚨 is the Senate vote on HB 8002 - CT's housing bill in the special session.🏘️ Contact your State Senators to share how CT needs affordable, safe and sustainable homes! www.cga.ct.gov/asp/menu/cga...
Reposted by Matt Lazell-Fairman
The Trump Admin's shameful attacks on kids with disabilities are happening on every front: legislation (OBBB), regs, and RIFs. The Social Security Administration's new proposed rule to limit SSI eligibility is yet another example. 1/ firstfocus.org/update/recen...
Recent Actions by the Trump Administration Target Children with Disabilities
Proposed rules, reductions in force, threaten roughly 100,000 children who rely on Supplemental Security Income, plus others in need of support and
firstfocus.org
November 13, 2025 at 2:54 PM
The Trump Admin's shameful attacks on kids with disabilities are happening on every front: legislation (OBBB), regs, and RIFs. The Social Security Administration's new proposed rule to limit SSI eligibility is yet another example. 1/ firstfocus.org/update/recen...
Reposted by Matt Lazell-Fairman
I just kind of think all these people should, after a fair trial in which they are zealously represented before a jury of their peers, be eaten
November 13, 2025 at 1:41 AM
I just kind of think all these people should, after a fair trial in which they are zealously represented before a jury of their peers, be eaten
Reposted by Matt Lazell-Fairman
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 9:39 PM
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Reposted by Matt Lazell-Fairman
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus Robinson Lab Stanford
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells to promote pathogenic antinuclear T and B cell responses in lupus.
www.science.org
November 12, 2025 at 9:54 PM
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus Robinson Lab Stanford
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
Reposted by Matt Lazell-Fairman
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 8:45 PM
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
Reposted by Matt Lazell-Fairman
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
November 12, 2025 at 8:38 PM
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
Reposted by Matt Lazell-Fairman
I’m out making deliveries for my local food pantry today and it is so devastating. People are afraid to open their doors because they’ve seen too many of their neighbors taken away.
So GD un-American.
So GD un-American.
November 12, 2025 at 5:26 PM
I’m out making deliveries for my local food pantry today and it is so devastating. People are afraid to open their doors because they’ve seen too many of their neighbors taken away.
So GD un-American.
So GD un-American.
Reposted by Matt Lazell-Fairman
The #chronicfatiguesyndrome article in Newsweek from 11th November 1990. #myalgicencephalomyelitis #mecfs #cfsme.
www.newsweek.com/chronic-fati...
www.newsweek.com/chronic-fati...
Chronic Fatigue Syndrome
In 1974, Nancy Kaiser made the mistake of coming down with an illness that didn't fit any of the available diagnoses. The Albuquerque housewife was just 38, an avid golfer and swimmer, and under no pa...
www.newsweek.com
November 11, 2025 at 8:17 AM
The #chronicfatiguesyndrome article in Newsweek from 11th November 1990. #myalgicencephalomyelitis #mecfs #cfsme.
www.newsweek.com/chronic-fati...
www.newsweek.com/chronic-fati...