I’ve reached the three year mark since the last time I was able to stand up. Three years fully bedbound. Hard to put into words how profoundly long COVID and ME have altered my life

Some stats from 2025. Average number of invites issued per paper was 6. The highest number of invites per paper was 17 (down on previous years, where it usually strays into the 20s). Securing referees takes about as long as referees take writing their reports.

Public health officials and the media are communicating as if there were only two possible outcomes to hantavirus infection: death and full recovery. This is despite already existing evidence that hantavirus, like many other viruses including COVID, has severe post-acute sequelae.

The case for routine patient review in long COVID research www.thelancet.com/journals/lan... Screenshot from latest Science for ME weekly update #LongCovid

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

“There is a city nearby that we hide from view. Its people are of all ages, ethnicities & classes. What unites them is a disease: all are diagnosed w/ myalgic encephalomyelitis. We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them…”

New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11

"Long COVID received 14% of its disability commensurate funding... ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding." Plus the LC disability weight of 0.21 likely underestimates its burden. www.nature.com/articles/s43...

Those researchers who routinely do patient involvement know the value of the insights of the people who actually have the disease To enable involvement of pwLC at all stages of research @longcovidsupport.bsky.social offer a Research Involvement Consultancy service. www.longcovid.org/research/res...

Yes. Now.

👏🏻👏🏻👏🏻👏🏻👏🏻

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

New comment The case for routine patient review in long COVID research www.thelancet.com/journals/lan...

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

Today is Long COVID awareness day. What does the data show about Long COVID in 2026? How common is it, how bad is it, what does it consist in? The Patient-Led Research Collaborative has put together a fact sheet based on the most recent data. Cannot recommend highly enough!

The Dutch state has forbidden the use of its funding for research into patented drugs for ME, because it doesn’t want to pay to treat us if it’s not dirt cheap. Yet another blow for the myth of state funding neutrality in biomedical research #philsci

New on the Archive: de Canson, Chloé (2026) Diseases as Homeostatic Property Clusters. [Preprint] https://philsci-archive.pitt.edu/28478/

My paper on disease has been accepted at Philosophy of Medicine! I argue that diseases form homeostatic property clusters: their underlying pathomechanisms cause clustering in their symptomatology, biological signature, response to treatments, and prognosis philpapers.org/rec/CANDAH

Charles S. Peirce on William James: “he so concrete, so living; I a mere table of contents, so abstract, a very snarl of twine”

“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...

Alice James’s diary entries on the suicides of random people

The meaning of words is to be decided not by their use, usefulness, or history, but by their commercial benefit to the most powerful lobby groups. I have a recipe for almond milk in a cookbook from 1226. It has been used as a term in English for hundreds of years. www.theguardian.com/business/202...

It's ironic to see a discipline care **so much** about unbiasedness (causal inference!) at the level of a single test but then have a research production system and culture that is basically a ferocious bias generation machine. This is not good.

Alice James told her brother Henry James that, could she have her close friend Katherine Loring “quietly and uninterruptedly for a year to relieve her of all responsibility, she would get well”. Alice was diagnosed with hysteria and Henry cruelly surmised that her illness was a ploy to keep K close

It’s an honour to have joined the @patientled.bsky.social as a contributor. The PLRC published the first study on long COVID, establishing the phenotypic characteristics of the disease doi.org/10.1016/j.ec..., and the most cited paper on LC, outlining its biomedical features doi.org/10.1038/s415...

Out of over half a million healthcare providers in the UK, thirty-three have viewed the module on managing severe ME that was touted as the solution to the ME crisis. This leads to people like Savannah currently being detained and tortured in NHS hospitals

Not just any journalist, she won the goddamn Triple Crown of broadcast journalism (an Emmy, a Peabody, and a Murrow) in 2024 for her reporting on Gaza. This is textbook censorship of the highest degree

Mood in minneapolis right now

Another question I came here with was: how effective are the whistles and honking? Does it stop abductions? And the answer is, surprisingly to my cynical self, yes, and often. I have talked to so many people who have successfully interrupted kidnappings.

It seems clear Alex Pretti, a healthcare worker, was murdered for engaging in the exact kind of community care we hope all care workers to embody: the kind that doesn’t stop at the threshold of the hospital, the clinic, but that aims to care for and support the community where and how they can

Completing a review in four days to manifest reviews for the paper I submitted six months ago

Call to action:

It’s -9 degrees. Downtown Minneapolis is packed for the anti-ICE rally and the crowd keeps growing

Charles S. Peirce and Simone Weil

Recent research shows blood from people with ME/CFS and Long COVID directly harms healthy muscle, reducing force, stressing mitochondria, and causing structural breakdown. Results implicate blood-borne drivers of muscle weakness, exertion intolerance, and PEM. 🔗 doi.org/10.1088/1758...

I saw someone argue for eliminating R&Rs, so that journals either accept or reject papers. Is that a popular view? Most of my papers have been made much stronger by R&Rs, even when they had been presented, received feedback from colleagues, etc. Sth abt anonymity makes ppl more critical?

Now unlocked: Death Panel Presents: Health Fascism and the Anti-State State. A close analysis of the first year of Trump and RFK’s pledge to “Make America Healthy Again,” the damage it’s caused, and how to stop it (link and transcripts in next posts)

“In genetics and complex disease research, scientists often apply what is known as the extreme phenotype strategy … Studying those at the farthest ends of the spectrum amplifies biological signals and accelerates the discovery of causal pathways and potential drug targets.”

Ramsey: “I don't feel the least humble before the vastness of the heavens. … My picture of the world is drawn in perspective, and not like a model to scale. The foreground is occupied by human beings and the stars are all as small as threepenny bits.”

Long COVID clinics are quietly closing, leaving thousands of patients without specialized care via @scienceline.org scienceline.org/2026/01/long... Thank you to the people living with Long COVID who shared their stories and to the healthcare providers and advocates for sharing their insights.

„This is why the chant “Death to the tyrant, whether king or [supreme] leader” resonates so powerfully. Iranians are rejecting the Islamic Republic, but also foreign-backed alternatives such as Reza Pahlavi, who asks the protesters to fight to the end from the comfort of his home near Washington.“

“Do we doubt that each of us encounters reality not directly, but through the thicket of our individual psychic realities, with their stubborn frames and secret desires, the vast sediment of our past histories?”

If the Palestine Action hunger strikers die - which they could do at any moment, as they are now very close to the end - it will be the government that killed them. Today’s column explains why. Please share, and write urgently to your MP. www.theguardian.com/commentisfre...

The Sick Times (@thesicktimes.org) is hiring! We're looking for a new part-time podcast and social media producer who will revive our weekly podcast, help expand our social media presence, and assist with other editorial tasks. More details here, applications are due on January 20:

A shocking fact few people know: the DWP (UK’s government agency responsible for disbursing disability benefits) has funded a clinical trial intended to show that people with the disease ME could be cured with a few weeks of exercise and thus did not need disability benefits

Remarkably, Alem Matthees, the Australian patient whose freedom of information request liberated the raw data from the PACE TRIAL, has reported some improvements in his condition: virology.ws/2026/01/02/t...

For no reason whatsoever, posting these images of US troops enjoying the pleasures of imperialism in Panama, 1990

I'm writing about the Palestine Action hunger strikers at the moment, any of whom could die at any moment, and the astonishing media and government silence surrounding them. The Establishment seems to have become even crueller than when Thatcher was PM.

once again encouraging you all to support billionaire-free, worker-run, independent newsrooms how and where you are able

“Suppressing the demarcationist impulse will also have the healthy effect of obliging us to recognize poorly-conducted science as just that, poorly-conducted science; and of encouraging us, instead of simply sneering at ‘pseudo-science,’ to specify what, exactly, is wrong with [it].” Great paper!