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.

Today is the last day of public comment on a rule that would force cancer and HIV patients to prove "significant impairment" so they can keep their exemption to Medicaid work requirements. This "will kill people, I’m literally living proof of that," said one patient with a brain tumor.

Trump to HIV and Cancer Patients: Get Back to Work - The American Prospect

A surprise rule added to the Big Beautiful Bill could disrupt access to Medicaid for people with serious illnesses who thought they were exempted from work requirements.

prospect.org

Arguments for a biological cause are “mocked” and “overwhelmed”, science is “ignored”, and clinicians with success treating ME are “hounded out of business”. The Countess of Mar speaking about a “school of psychiatry” in the House of Lords, 2010. #MECFS

Holiday in the climate emergency. No that’s not AI or edited, just a snapshot I just took with my phone on Lacanau beach in France. What future will this boy grow up in? It is in our hands, but time is running out.

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“Seven days after the girl’s medical team infused trillions of viruses carrying the recipe for the base editor into her spinal fluid, she died of a severe immune reaction linked to the therapy…” This, in @science.org, is an important and tragic story. (It’s also an incredibly well reported one.) 🧪

Exclusive: Death of girl in Chinese gene-editing trial was never made public

Parents want accountability after study went disastrously wrong, Science and Retraction Watch investigation reveals

science.org

The UK ME/CFS Biobank (UKMEB) is looking for healthy control volunteers for a study looking at virus reactivation in ME/CFS/LC The UKMEB is still looking for women aged between 31–50 and men between 31-40 who can visit LSTHM or who live in the catchment area. meassociation.org.uk/narr

The UK ME/CFS Biobank is looking for healthy control volunteers for a study looking at virus reactivation in ME/CFS/LC - The ME Association

The CureME Team at the London School of Hygiene and […]

meassociation.org.uk

1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

Cell and tissue enrichment in ME/CFS - ME/CFS Science

By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS

mecfsscience.org

“Culture of impunity” is right. The demand is to never hold public figures accountable for wrongdoing, not even verbally when they’re already beyond the reach of human accountability and won’t hear the criticisms and jokes. The legacy must be sanitized, or current elites might feel less impunity.

Better Things Are Possible@internethippo.bsky.social · 3w ago

Mainstream Respectable opinion is that people joking about a bad person's death represents a culture of cruelty, but really it represents a culture of impunity. It's a coping mechanism for watching someone do evil their whole life and never seeing consequences

Trump urged Iranians to protest and told them "Help is on the way" and now he is turning over confidential information on Iranian asylum seekers applications to the Iranian government prior to deporting them back to Iran.

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The Washington Post@washingtonpost.com · 4w ago

The Trump administration violated U.S. law by providing Iran’s government with confidential information detailing the asylum applications for Iranians it planned to deport, a new lawsuit filed in D.C. alleges.

🚨 HEADS UP: If you haven't submitted a comment on the OMB proposal yet, there's still time - but it's running out! There are only 5 days left to push back against Russell Vought's attempt to give political appointees unprecedented control over federal research funding. Take Action: zurl.co/w6DcW

Graphic from Stand Up for Science urging action on a federal funding proposal. Large text reads: "5 Days Left" and "Help Us Stop Vought From Destroying American Science." A portrait of Russell Vought appears beside the U.S. Capitol. A banner along the bottom reads: "Submit a comment on the OMB proposal | Link in bio to take action." The Stand Up for Science logo appears in the top left.

The US Administration will disgorge at least 3 new rules in the next 1–3 months that will shatter our system of recruiting global STEM talent as students at our world-leading universities. The first of these will be the 'Duration of Status' rule, explained here. Two even larger attacks will follow.

America Is About to Hand Its Best Founders to Its Rivals

On June 17, the White House cleared the final regulatory checkpoint for a Department of Homeland Security rule that would cap F-1 student visas at four years, shorten the post-graduation grace period

realclearmarkets.com

Today is the 250th anniversary of Boston’s mass inoculation against smallpox on July 3, 1776. The city was effectively closed to commerce from July through September 1776. The mass immunization effort was cheered as evidence of true independence. Here's how I described it in my book:

While John Adams and fifty-five men in Philadelphia debated a resolution on independence and the final wording of the Declaration of Independence, the people of Boston declared their own independence from smallpox. The measures taken in both cities provided hope that America would not only be a republic free of a king but also a country free from disease. On July 3, 1776, a day after independence was declared in Philadelphia, the Massachusetts General Court voted to allow inoculation. Despite the dangers of infection, the people of Boston and the surrounding areas cheered the news. Ezekiel Price, a court official and insurance broker, declared “Liberty is given for to inoculate for the small-pox; many begin upon it this afternoon.” Hannah Winthrop described the scene: “Boston has given up its Fears of an invasion & is busily employd in Communicating the Infection. Straw Beds & Cribs are daily Carted into the Town.” She wrote that “Men Women & children eagerly crowding to inoculate is I think as modish as running away from the Troops of a barbarous George was the last year.” Dr. James Warren wrote to John Adams that the “rage for inoculation” had “whirled me into its vortex.…”  Warren and his wife Mercy Otis joined Abigail Adams and her four children who had been invited to be inoculated at Abigail’s uncle’s house in Boston along with Abigail’s sisters Elizabeth Cranch and Mary Shaw and their families. Even though Boston was teeming with the sick, the prospect that the city could conquer smallpox made it "a scene delightful indeed." Cotton Tufts was satisfied that he could now "take my leave of Earth, satisfied that the Day of American Redemption was at Hand."

A politician that wanted my vote would rage against AI slop. It’s destroying so many communities built in good faith, with no expectation of profit, by people that just wanted to knit the world back together. Travesty so few have anything to say.

Watching this was so moving because I never saw anyone nurse Maeve like this. It was all left to me, alone, round the clock for seven months - including during hospital admissions. I couldn't do it all. We needed help. There was no help. Getting her out of hospital was the best help, but without a

Anil van der Zee@anilvanderzee.bsky.social · 2mo ago

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

What's worse, it will only reinforce the author's false premise that Long COVID "advocates" are the reason this "cure" isn't being explored. Oh, but it is. In piece after piece after piece of unsubstantiated pop-sci drivel. Dear @wired.com Cherry-picked anecdotes do not science make. #pwME

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