ME patient. Spouse with LC & ME. Fund marginalized diseases. Plow under suburbia. Build walkable, accessible towns and cities.

Joined May 2014
John Prine’s death felt like a kick in the stomach. It took me a year, but I finally finished an essay about what makes his music so special and how it helped me learn to be sick #mecfs #meawarenesshour bit.ly/3fRX0EG
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Matt Lazell-Fairman retweeted
🖤#RIP Kyra S. *27.3.2005 - †23.6.2026🖤 Kyra war schwerst an #MECFS erkrankt, wie alle #VerySevereME erhielt sie keine Hilfe!💔 In einem ehemals sozialen Staat werden immer mehr junge Menschen in Suizid u. Sterbehilfe getrieben! Wie lange noch? @BMG_Bund @ninawarken @DoroBaer
Mein Hass auf Politik (@ninawarken), auf Krankenkassen und auf Ärzte, besonders auf die Kassenärztliche Vereinigung, ist unermesslich groß. Ich schäme mich, Teil dieser ekelhaften Gesellschaft zu sein. R.i.p, Kyra 🖤💫
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Matt Lazell-Fairman retweeted
Sorry to report that musician and poet James Strazza passed away this week. He had been suffering from severe ME since 2019. Condolences to family and friends.🕯️🕊️💙 (There's a link to his website in his Twitter bio.) #MyalgicEncephalomyelitis #MECFS
Please support my dear friend @jamesstrazza . A very severe #pwME who wrote an outstanding book full of stunning poems dedicated to those who are in search of meaning! #MECFS
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Matt Lazell-Fairman retweeted
Writer Enters Flight Part Of Fight Or Flight Loop
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Matt Lazell-Fairman retweeted
If the call is for better research into mind-body programs for Long Covid and ME/CFS, it's hard to understand why the two most salient examples of such trials are completely absent from the story. If the trials had been successful, maybe they would have been included.
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Matt Lazell-Fairman retweeted
The problem with articles like the Wired one is LongCovid patients aren’t the intended audience. These articles aren’t meant for us. They are for our families, our doctors, our employers, & our elected officials, & they are used to harm us.
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Matt Lazell-Fairman retweeted
"There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind. And that is not science. That is repeating history."
‼️⚠️Please read this until the end. A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept. This needs to be challenged. Not because the nervous system does not matter. Not because psychological support cannot help. But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades. There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind. And that is not science. That is repeating history. The article begins with a striking sentence: “There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.” This may sound forceful, but it is a very misleading way of presenting the problem. The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools. “No single diagnostic biomarker” is not the same as “no biology.” In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes. Is everything settled? No. Does that mean it is psychological? Also no. Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools. One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease. And that mistake has caused harm for decades. The article also says: “Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.” No. That is not correct. A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments. That is not scientific failure. That is research into a complex and new disease. 🔵Continued in the next post.👇🏻 (1/6)
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gaslighting people for generations as they suffer & die from medical neglect & then demonizing them b/c *respectability politics* is truly one of the most consistent forms of daily social violence the privileged, professional-class enacts on disabled people, women & POC.
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Always.
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Matt Lazell-Fairman retweeted
The author and @Wired owe @MeganTStevenson a huge apology for including enough information about her for anyone to be able to identify her as the likely culprit charged with harming science. That is "outing"--whether her name was used or not. This is basic stuff.
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You stated in 2025 you believed most Long Covid patients were psychogenic. You spent a year chasing a small patient population repping this belief, despite no proof brain training works. You ignored tons of proof for LC definition, biophysical causes, treatments. @WIRED
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Added 5 more issues from 2007-9 to this set. Haven’t browsed much, but Winter 08 includes interview with Golden Girls creator Susan Harris about her CFS and the two-part “Sick and Tired” episode, plus color photos of pwME from a photo campaign. #CFIDSChronicle #MECFS #LongCovid
Just added another ~1500 pages to this set of @PlzSolveCFS #CFIDSChronicle. Collection now includes Chronicles from 1988 to 2002 + issues of Solve’s mid-2000s “CFS Research Review.” Thank you @KCSteckel for the materials. 1/2 #MECFS #LongCovid
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If you haven’t seen the Golden Girls episode, it’s worth watching. It was still very relatable when I last watched. Here’s a supercut of Dorothy’s scenes. 2/2 youtu.be/vVyLZTKDy2E
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Matt Lazell-Fairman retweeted
Trudie Chalder told the world ME sufferers had to drop the idea they were sick and just Think Differently+Exercise. Now all her junk CBT research is discredited, she says Recovery doesn't mean getting well. It means coming to terms with a life of illness xitter.cf/davidtuller1/status/20…
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Matt Lazell-Fairman retweeted
Love and respect to @julierehmeyer for her beautiful tribute to Beth Mazur. #MEwarrior #MECFS #LongCOVID
Beautiful & touching tribute by @julierehmeyer to the beloved & deeply missed Beth Mazur NYT, Modern Love: "May I End My Life With You?" "Beth & I met.....both sick with myalgic encephalomyelitis..a devastating disease medicine has mostly abandoned..' nytimes.com/2026/04/03/style…
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Matt Lazell-Fairman retweeted
Beautiful & touching tribute by @julierehmeyer to the beloved & deeply missed Beth Mazur NYT, Modern Love: "May I End My Life With You?" "Beth & I met.....both sick with myalgic encephalomyelitis..a devastating disease medicine has mostly abandoned..' nytimes.com/2026/04/03/style…
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Matt Lazell-Fairman retweeted
ME/CFS shows the highest impact on family members’ and partners' quality of life among conditions so far studied using the FROM-16 questionnaire
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Fundraiser is up to help this pwME. They are still being held. Funds will be spent on attorney fees and support while institutionalized. Any remainder will go toward housing when they are released. whydonate.com/fundraising/he…
🚨A pwME in Poland (not a minor) has been sectioned at parents’ urging. Their friend is working to help get them out and could use recs for Polish lawyers knowledgeable in these spaces or help from other PwME from Poland. If you can help, I’ll connect. #MECFS #LongCovid
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Matt Lazell-Fairman retweeted
Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @TheLancetInfDis, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/
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