Unknown Etiology

A darkened picture of me, a 40ish white woman, leaning against a pillow. Overlaid text reads August 8 is Severe ME Day

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound.

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hello friends. today is severe/very severe ME day. roughly 25% of people with ME (pwME) have severe or very severe ME and are bed-/housebound. today is about raising visibility of those of us who are too often hidden away because we are too ill to participate in the world outside our bed. many people with severe/very severe ME (pwSME) are unable to tolerate light, sound, or human interaction - because otherwise it would cause decline - and are left isolated and lonely. many are left without proper (or any) medical care, because they are unable to leave their house or even talk on the phone/video call to access telehealth services. pwSME are often unable to care for themself, relying on carers or family to help them just get through basic tasks of each day (e.g. food & drink & using the toilet); and for those who don't have any available help, going without & ending up more ill from necessary tasks.

for those who have very severe ME, they might spend years in pitch black silence, because any noise or light is intolerable & will cause severe symptom flares. they don't have the energy to move, to talk, barely even to think. for some, simply thinking too much can cause decline. there is no consistent treatment, there is no cure, and for many there will be no change in their existence for years to come. pwSME find that they can't even express their emotions around being so ill - any strong emotional response can lead to an exacerbation of symptoms and even a permanent worsening. we don't have the energy to even grieve the life we have lost.

today is severe/very severe ME (awareness) day. i have every intention of writing a blog post to share but i’m not convinced it’ll happen bc of energy levels. so in the meantime, have the message i wrote for our server.
#pwME #NEISVoid

hm I saw someone who I believe read the paper and press releases closely say it didn’t mention lc at all! and I could be wrong but I don’t believe they excluded covid-induced mecfs from the study either

Many people don't know this, but you are allowed to lie to cable news bookers. You can tell them you're coming on to talk about Sydney Sweeney or Biden Old, or what the fuck ever. And then you can just riff about Epstein until they cut you off.

the idea that everyone is going to get mecfs eventually if they sustain enough immune system hits has the same vibes as saying like “everyone will experience pem if they exert themselves enough”. in that it is a wild claim that isn’t supported by available evidence incl ppls’ lived experience.

forever haunted by a vibecamp retrospective that approvingly mentioned the presence of fascists alongside leftist trans furries as an indicator of a healthy, open ideological ecosystem

And criticisms of him on this topic are meant to burnish his cred too--it is a deeply cynical move.

A crouched yellow beast on red clay pot

Painted representation of an animal, though I don’t know what. Really impressively crisp linework—if you’ve never tried painting in ceramic, let me assure you that whoever did this was REALLY good at their job.

mecfs isn’t an autoimmune disease. it just has the autoimmune disease sex ratio and the autoimmune disease onset age range. and increased prevalence of the autoimmune genes,

ChatGPT stating that New Mexico has the letter Q in its name

New go-to teaching tool:

there’s a phd biochemist and/or a phd bio/comp bio person I know who I could probably talk into giving comments on studies like this! from my ex job. if the idea is that we assemble a pool of fancy people sympathetic to our cause (although I’m not sure how fancy we would need)

Screenshot of paper: The Ethical Cost of Avoidance There is a lot of talk about the ethical costs of Al. But equal attention should be given to the ethical cost to avoidance. In today's rapidly evolving technological landscape, avoiding AI in social work education creates its own ethical dilemmas. As Al becomes integrated into social services, healthcare, and other systems our social workers will encounter, those without Al literacy may inadvertently perpetuate or fail to recognize algorithmic biases affecting their clients. When social workers lack the skills to critically evaluate these systems, they risk reinforcing the very inequities our profession aims to address. Furthermore, as institutions increasingly rely on algorithms for decision-making, our social workers must be prepared to advocate for their clients within these systems, understanding both their capabilities and limitations. Al tools can significantly extend services to underserved populations who have historically faced barriers to accessing support. Through chatbots for initial screening or automated translation services for multilingual communities, these technologies can bridge gaps in service provision. By rejecting these tools wholesale, we risk limiting accessibility for the most vulnerable clients, particularly in rural areas or communities with provider

I can’t just scroll on my LinkedIn without seeing shit like this from my profession and I’m so tired

Digital art, my work. Surreal, fantasy, a women stands confused as a skilled, dragon, monster swirls around her

Wrong Turn- 2025

I wanted to play more with the surreal and weird in my work. I had fun with this one!

🚨I'm leading @oversightdemocrats.house.gov calling for a hearing to let survivors of Epstein's abuse testify before Congress.

For those who wish to speak up, we cannot meet their courage with inaction.

This is crucial to getting the healing, transparency & accountability survivors deserve.

so are there phd programs that aren’t abusive or

unphysical behavior tbh

95 MILLION 😱

Women who could have helped course correct and offered to help course correct (myself included, after a sexual assault by another Bernie delegate when I was a Bernie 2016 DNC whip) were instead totally frozen out.

It was very telling.

I am somewhat reluctant to dive in here, but it needs to be said: one big thing that happened here is that women staff spoke out about the permissive culture of harassment in 2016.

And instead of listening and creating a more inclusive staff culture, he doubled down on the most toxic dude actors.

RFK JR Announces He Will Just Go Door-To-Door Killing People To Save Time

Long read sequencing characterises a novel structural variant, revealing underactive AKR1C1 with overactive AKR1C2 as a possible cause of severe chronic fatigue - Journal of Translational Medicine Background Causative genetic variants cannot yet be found for many disorders with a clear heritable component, including chronic fatigue disorders like myalgic encephalomyelitis/chronic fatigue syndro...

translational-medicine.biomedcentral.com/articles/10.... do this one next.

I’m happy people seem to be mostly happy, although I wish there had been a bigger breakthrough. Im glad they clarified a bunch of times that they only had the funds to look at genetic variants that are relatively common in the general population.

my (minimally informed) opinion is that the DecodeME results are about what I expected, it would’ve been weird if they’d found nothing considering the study design. I don’t think the results fully explain why there are some families where like 8 people have mecfs.

thank you for explaining!

statehood for DC now and forever

their high level of caution, and some who seem to get tons of opportunistic infections instead or in addition.

oh okay, that’s interesting. I think I am probably way more susceptible to viral infections now but have not experienced any bacterial or fungal infections (and am not sure if I have mecfs or just dysautonomia). I’ve noticed that some long covid people seem to get covid an improbable amount given

“If they're early patients, good chance they're more susceptible to infection in general” can you explain what you mean by this? have you observed that mecfs causes greater susceptibility to infection at first but eventually this chills out?

Prof Carmen Scheibenbogen demonstrated that ME/CFS Continues to receive insufficient attention in terms of research funding and patient care. In ME/CFS, there is clear evidence for autoimmune processes, persistent inflammatory reactions, vascular dysfunction with hypoperfusion, and muscular mitochon Carmen Scheibenbogen | International ME/CFS Conference 2025: Where have we made progress?

2) During her presentation at the Berlin Conference in May 2025 (minute 5:50), Scheibenbogen used a lower estimate herself, saying that: "We know now that approximately 10-20% of all Long Covid patients do fulfil these Canadian Criteria for ME/CFS"
www.youtube.com/watc...

1) We often see statements that 50% of Long Covid patients meet ME/CFS criteria.

This is mainly based on studies by the Scheibenbogen group (Kedor et al. 2022), but this sample was pre-selected: these LC patients already suffered from moderate fatigue and exertion intolerance.