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Matt Lazell-Fairman

@mfairma.bsky.social
1.4K followers 1.6K following 318 posts

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.

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Reposted by Matt Lazell-Fairman
C.H. Romatowski @chromatowski.bsky.social · 08/10/2026
Lines up with patient-reported experience that in the context of PEM, exercise often just takes away from other activities (like ADLs). I really hope this paper helps POTS practitioners take this knowledge on board.
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Reposted by Matt Lazell-Fairman
Julia Métraux @juliametraux.bsky.social · 08/10/2026
Looking for an employment lawyer who has supported people with Long Covid for an article I'm working on who would have 15 minutes to speak Monday-Wednesday next week. Please reach out at jmetraux@motherjones.com
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Reposted by Matt Lazell-Fairman
Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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AFP News Agency @en.afp.com · 05/10/2026
🇰🇪 🇺🇸 HIV deaths on the rise in Kenya since US aid cuts At least 24 HIV-positive sex workers in Kenya have died since aid was slashed by the United States in early 2025, despite being in good health until then. The Trump administration has restructured support away from NGOs in Kenya
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Clara Jeffery @clarajeffery.bsky.social · 05/10/2026
11-yo Andrés lived with his dad in Texas—but was deemed “unaccompanied” by ICE and sent to foster care. “They’re kidnapping people’s kids and keeping them in government custody,” a former Biden official told us. www.motherjones.com/politics/202...
motherjones.com
“You kidnapped my son”
ICE is now separating children from their parents and deeming them “unaccompanied.”
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october "pre-order The Struggle Is Always Worth It now!" krausch @octoberk.bsky.social · 01/10/2026
People w Long COVID are stigmatized & ignored throughout society. In prison, it's a situation of almost total silence. Despite very high COVID infection rates, there's no talk abt Long COVID cases. That's a result of the way prisons treat medical needs in general. thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
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Reposted by Matt Lazell-Fairman
Michael Mechanic @michaelmechanic.bsky.social · 04/10/2026
This is all hands on deck! Pneumatic plague is airborne and nearly always fatal if untreated. Wiped out 150 million, half of Europe, way back when. Treatable with antibiotics, but we don't have enough antibiotics. Also from a lab in Russia, where they still have weaponized plague. Total nightmare.
motherjones.com
Reports of a plague outbreak in Russia follow the death of a researcher
Several hospitals in the Irkutsk region have been shut down and up to 200 workers have been quarantined.
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Suzanne Forbes aka Slurketta @suzanneforbes.bsky.social · 04/10/2026
"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this." True for me. Giving up my life's work, my vocation, seemed impossible, but it's been such relief.
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Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 04/10/2026
Unrest: a ‘must see’ documentary. The degree of disability of people with M.E. Is confronting, yet peak support/medical training body in Australia will close next month if it doesnt get paltry $220k govt funding @markbutlermp.bsky.social @mon4kooyong.bsky.social
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Reposted by Matt Lazell-Fairman
Adam @abrokenbattery.bsky.social · 04/10/2026
My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇
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Aaron Reichlin-Melnick @reichlinmelnick.bsky.social · 02/10/2026
Last year not a single refugee fleeing religious persecution was admitted to the US.
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CREW @citizensforethics.org · 01/10/2026
As the Trump admin continues its attacks on voting rights, the OMB now wants to change spending rules to prohibit federal grant money from being spent on voter registration drives, which could compromise disabled and elderly Americans' ability to vote.
propublica.org
This White House Plan Threatens Funding That Helps Disabled Americans Vote
A new rule from the Office of Management and Budget would prohibit anyone from using federal grant money for voter registration drives. It’s part of the Trump administration’s broader efforts to…
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Reposted by Matt Lazell-Fairman
sarah boothby @swastrosarah.bsky.social · 30/09/2026
I support this campaign because nobody knows when hospital treatment may be needed, and nobody should be afraid to seek medical attention simply because NICE guidance is unclear and clinics do not understand how to manage risk. @england.nhs.uk refused to adopt the rduh clinical guidance x3 2022-2024
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Medicaid Work Requirements Interview: Journalist seeking rural residents willing to discuss how they are affected. wildmimosatrees@proton.me for details.
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Reposted by Matt Lazell-Fairman
#MEAction Network @meactnet.bsky.social · 24/09/2026
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry." #MECFS #pwME
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(1/3) I would not repeat years of very severe #MECFS again for billions of dollars. Not just because of the ongoing difficulties, but also the risk of not surviving. Just one single day would wipe the smug and doubt off the faces of those who disbelieve. Just one single day, but there is a catch.
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Matt Lazell-Fairman @mfairma.bsky.social · 24/09/2026
Not well enough to watch but filing this away for the future. So cool.
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Reposted by Matt Lazell-Fairman
keri @keristars.bsky.social · 23/09/2026
hey PBS nerds, it's new tonight on NOVA! "For millennia, Indigenous communities in North America have practiced a unique form of science. From navigating the featureless Arctic to building energy-efficient homes in the desert, see how cultural traditions have led to remarkable innovations."
pbs.org
NOVA | Knowledge Keepers | Season 53 | Episode 10
Witness how Native North Americans have generated scientific knowledge over thousands of years.
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Reposted by Matt Lazell-Fairman
Erin Biba @erinbiba.bsky.social · 23/09/2026
Hey so uhhhhh that Boston Globe story about the lesbian bar relaxing its covid rules is an *absolute fucking hit piece* targeting the disabled, chronically ill, and covid-conscious and it would be great if folks sharing and joking about it could recognize that framing.
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Erin Biba @erinbiba.bsky.social · 23/09/2026
Ableism is so acceptable on the left(s) dem members of Congress feel perfectly comfortable making fun of masking. bsky.app/profile/tekn...
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 24/08/2026
Thanks to Matthew, Alexander, and Denise Lopez-Majano for their insightful statements on being a family living with ME/CFS.
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#MEAction Network @meactnet.bsky.social · 22/09/2026
The ME/CFS Exchange Webinar Series launches next month. 1st webinar in the quarterly series will focus on post-acute infection symptoms. October 8th from 1 pm to 3 pm ET via Zoom. Registration required: ow.ly/2ABp50ZOPKP Hosted by NINDS in partnership with MECFSnet. #NIH #PwME #MECFS
MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed.  October 8th at 1 to 3 pm ET. virtual.
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Mike Elk @mikeelk.bsky.social · 23/09/2026
In 2018, my college classmate, Marielle Franco, a socialist Rio de Janeiro city councilwoman, was assassinated. For the past 4 years, I've worked on this documentary about how her assassination inspired a movement. Watch our trailer and share. www.youtube.com/watch?v=AkxK...
youtube.com
Trailer: "Marielle Vive! How an Assassination Changed Brasil & Inspired a Movement"
YouTube video by Payday Report
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I Scare You Like Sound Dog @chadstanton.blacksky.app · 23/09/2026
“The Department of Health and Human Services informed congressional appropriators earlier this year that it was moving about $12 million from its Office of Minority Health to help cover the ballooning cost of security for Health Secretary Robert F. Kennedy Jr.” www.wsj.com/politics/pol...
wsj.com
Exclusive | RFK Jr.’s Enhanced Security Was Funded With Money From Minority Health Office
The cost of the health secretary’s security grew from roughly $10 million in fiscal year 2025 to $17 million in fiscal year 2026.
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Matt Lazell-Fairman @mfairma.bsky.social · 23/09/2026
Definitely. It’s very freeing being able to walk to a grocery store, particularly if you like to cook.
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Reposted by Matt Lazell-Fairman
Liz Szabo @lizszabo.bsky.social · 23/09/2026
Free COVID vaccines for the most vulnerable kids--including uninsured kids--have not yet been delivered to states. Vaccines for privately insured kids have already shipped. "We want all parents and children to have access to the vaccine at the same time––as soon as it is approved and available."
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Matt Lazell-Fairman @mfairma.bsky.social · 23/09/2026
Fresh bread! Amazing. Congrats.
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Matt Lazell-Fairman @mfairma.bsky.social · 23/09/2026
A quote from the essay that most sticks in my head: “If there was a “nerve” for suffering, this disease activates it. Like torture. He says it feels like wind blowing on a body with no skin.”
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Matt Lazell-Fairman @mfairma.bsky.social · 23/09/2026
Death isn’t the only outcome (though it shouldn’t be dismissed). People fight for masking and clean air for many reasons. ME/CFS and Long Covid are mine. They can rip your life to shreds. Here’s a moving article by the mother of pt who recently committed suicide: www.galenwarden.com/post/severe-...
galenwarden.com
Severe ME/CFS and Suicide
There are many diseases with no cure. But those are diseases that the world understands, empathizes with, and validates.
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Adam @abrokenbattery.bsky.social · 15/08/2026
“It feels like I’m on an island by myself, on a different planet, because no one seems to understand.” Emily developed #LongCovid aged 9. Now 14, she lives with constant pain and struggles to fit in at school because she uses a walking stick. Clip from Channel 5 News.
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Karen “the good kind” @kpsinging.bsky.social · 13/09/2026
Today would have been my brother David's 60th birthday. We lost him in late 2021 to Covid. He had Down Syndrome and had developed dementia. One exposure to Covid and he passed within days. Whenever I read "yes but they had comorbidities" I want to scream because those are also people we loved.💔
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Kategod 🐉🧿🦑𓅛🪬 @kategodart.northsky.social · 20/09/2026
so it turns out that miners actually liked the canaries (have you met one, they are cute little individuals) and didn't want them to die maybe there's a lesson to be learned here idk
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Cliff PervoSCARY @pervocracy.bsky.social · 20/09/2026
This is a canary resuscitator, which miners would use to revive canaries that had passed out from toxic gas, because ideally not only do you care, you don't even leave the bird behind. just a little mining history and not at all a furious scream
A canary in a sealed box attached to an oxygen tank
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Matt Lazell-Fairman @mfairma.bsky.social · 22/09/2026
Yale’s Covid clinic recommended CHOP to me a couple years ago as highly effective for ME. They also pushed it again earlier this year in regard to severe weakness episodes I’ve been having. Here‘s my tweet after the fact.
Tweet that reads “ I was prescribed CHOP protocol just last year by a major Long Covid clinic, told it had been adapted for pw #MECFS (when it hadn't), had astronomical recovery rates, and that I would just need to commute 1.5 hrs round trip several times a week to participate. This must stop.” That tweet retweeted another poster sharing that a POTS clinic was prescribing GET.
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Liz Szabo @lizszabo.bsky.social · 21/09/2026
“We saw a huge drop off in people getting vaccinated,” Pannaraj told CIDRAP News. Many immigrant parents are afraid of being detained or arrested by ICE, she said. “It’s a valid fear.” www.cidrap.umn.edu/public-healt...
cidrap.umn.edu
US pediatricians report seeing fewer patients because of immigration enforcement worries
Doctors also note that their patients hesitate to apply for government benefits and often keep their children home from school.
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Kirsty 🌻 @kirstysmestory.bsky.social · 21/09/2026
Thank you for your work. If you ever want to write about systemic abuse of ME patients I was one of several minors who were institutionalised and abused. I have many documents of this happening in 2013. They repeatedly locked me up in solitary confinement as punishment for “sickness behaviour”
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Matt Lazell-Fairman @mfairma.bsky.social · 21/09/2026
Dreading a virtual appt. next month with a university covid clinic and came across this hilarious, shattering meme on CFS subreddit. Things may be changing, but clinical care is still so so bad. #MECFS #LongCovid
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Matt Lazell-Fairman @mfairma.bsky.social · 21/09/2026
Now that I’m housebound, I’ve been researching home care. Both local hospitals offer it. One is perfect, but refuses pts under 50. The other requires a referral and 1.5 hr in-person health assessment every time I need care, which I can‘t do. Travesty that you can be too sick to get medical care.
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Matt Lazell-Fairman @mfairma.bsky.social · 21/09/2026
Another friend has fallen sick with post-viral illness. That makes 8 ppl we knew before Covid (incl. my wife) that were generally healthy and working and now live with a profound disability. Of the 8, only 3 can work even part-time. Only 1 is past retirement age. Such a tragedy. #LongCovid #MECFS
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Alem Matthees @alemmatthees.bsky.social · 17/09/2026
I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Alem Matthees @alemmatthees.bsky.social · 21/09/2026
(2/3) Whitney Dafoe's #MECFS severity scale reveals the many layers of severe ME/CFS, which are usually merged together or excluded from research and surveys. It may not be obvious to outsiders, but the abyss of very severe ME/CFS has many levels too. Disability is not linear but exponential.
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#MEAction Network @meactnet.bsky.social · 20/09/2026
We are honored to share an amazing poem sent in for our Severe ME Artists Project. We are featuring “In a Room I Lie (For Rachel)” by Adrian Bagley. Adrian, if I can tag you, let me know! All art: www.meaction.net/severe-me-artists-… Thanks to CoRy Wysz 💤 for the video.
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Ethan Sacks @ethansacks.bsky.social · 18/09/2026
This coupled with the CNN story about the A.I. mistake that sparked a close call between the U.S. and China is terrifying.
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Matt Novak @paleofuture.bsky.social · 18/09/2026
“The report, according to one of the sources, was ‘entirely false.’ But it also ‘almost started a war,’ the source said. Any US operation against a Chinese vessel could have risked spiraling into an armed conflict between the two nations.”
cnn.com
Exclusive: US military had close call after using AI for false intelligence report, sources say | CNN Politics
The episode shows the risks of using this new, relatively poorly understood technology in the middle of the Iran war
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/09/2026
Article incoming from #MEAction on this, but for now I need y'all to know that while the comment box isn't marked at all, it has a character or word limit: about 4000 characters (or 525 words) seems to be it. Just so you don't write a huge thing and end up chopping it down, like I did.
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Julia Métraux @juliametraux.bsky.social · 01/09/2026
"The work and everyday labor of living with ME/CFS contains this recursive loop of everyday labor of being ill." For @motherjones.com, I interviewed @elimrogers.bsky.social on her book tracing the history of ME/CFS and what it's like to be exhausted in America. www.motherjones.com/media/2026/0...
motherjones.com
The relentless work of being sick
A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.
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Mari Ness, writer of things @mariness.bsky.social · 30/08/2026
....the ongoing delights of being both a Hugo finalist and a wheelchair user. "The backstage is for walking participants," said directly to my face, as a wheelchair user.
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ME/CFS Science @mecfsscience.org · 30/08/2026
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.
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