RFK Jr. Gives Xenophobic Reason For Measles Outbreaks In U.S. The Health and Human Services secretary regularly rails against vaccines that have been proven to prevent the spread of infectious diseases.

Bravo to all who enabled this.

A drawing of the U.S. Capitol building, with the teal Long COVID Campaign logo above it, with message of: Thank you for taking action! 14 Senators signed on to $210 million plus FY27 Dear Colleague Letter to Fund Long COVID

📣 #LongCOVID Community 📣 Thank you to EVERYONE who took action over the last few days! Your phone calls & emails resulted in 14 senators signing on to the FY27 #FundLongCOVID Dear Colleague letter to Senate appropriators for over $210 million in care & research funding! 1/x

I’d like to know more what he means by ‘scientific priority.’ ME is still severely underfunded. There are some positive signs but I wouldn’t say we’ve arrived yet.

Study links long COVID in kids to worse grades and attention problems A large NIH-funded RECOVER-Pediatrics study found that children and adolescents meeting the long COVID research threshold were more likely to have caregiver-reported worsening grades, attention diffic...

'Study links long COVID in kids to worse grades and attention problems'

'A major U.S. cohort study suggests long COVID in children may reach far beyond lingering symptoms, affecting how they learn, focus, and connect with friends at school.'

www.news-medical.net/news/2026042...

Godspeed

I donated as well:

#MCAS folks—

The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers.

Please take it, please share it!

Survey: forms.office.com/e/N4RDJYVep0

Org: ismcas.org

Qs: advocacy@ismcas.org

I tried this too. Was a bit relaxing. Also irritated the skin on my ear.

Taking a minute to look back at this event. It was good:

I wake
to a soft murmuring—
rainfall

#haiku #NationalPoetryMonth #InsomniaWriting

"Life" as a #pwME in the UK in 2026.

Despite talk of "never-events" and a "final" delivery plan.

Nothing meaningful is being done. An active choice by those with the power to chose.

If you have the wrong illness, this country kills you slowly through 1000's of agonising cuts of neglect.

DC Protest Welcome to the #MillionsMissing Virtual Exhibit On May 12th, #MEAction set up 300 red-draped cots on the Mall beneath the nation’s iconic Washington Monument in demonstration of the millions of peopl...

The caption is a bit misleading. It’s an installation for ME/CFS and Long COVID organized by ME Action. Most people don’t know that “post-infectious disease” includes ME/CFS. I’m pretty sure this is the event: storyofmillionsmissing.org/dc-protest/

I really think every article about Long COVID should mention ME/CFS, but it’s an even more jarring omission because the picture is from an ME Action protest. @meactnet.bsky.social

This article also does not make it clear that people are continuing to develop Long COVID from reinfection.

The long and costly shadow of COVID-19 Infected Canadians are still suffering from symptoms, but we don’t know how many

www.theglobeandmail.com/gift/16ccb40...

“I Have Lost Everything”: The Toll of Cities’ Homeless Sweeps Cities often take belongings — including important documents and irreplaceable mementos — when they conduct sweeps of homeless encampments. ProPublica gave notecards to people across the country so th...

We asked people who lived in homeless encampments that were cleared out in city “sweeps” to write about what object was the hardest for them to lose.

“They took my baby pictures and my moms obituaries,” a man in California wrote.

(Published Dec. 2024)

Love this

When I lived in Silicon Valley a programmer exasperatedly asked me what I 'expected' tech lords to do to make their products safer. I told them to hire more social scientists and listen to what they had to say.

They were very surprised there was a quick answer to the question, lmao

I've been thinking about the backlash Marie Kondo got and I think part of it was not just that she was saying "buy less shit" she was explicitly say "only buy what actually makes you happy" and in a nation of conspicuous consumption it pissed people off.

and while i do like to party, i am not *literally dying* — or becoming more disabled — to do it, thus, we create new ways to gather that change the calculation ✨

Research on COVID is being hampered by a lack of interest by publishers and funding, imo. Considering we are only about 7 years into a brand-new disease, we lost interest pretty quickly.

Hoping for you!

CRASH PREVENTION BY GALEN WARDEN From the forthcoming book, Dying to Live The most urgent thing you can do to prevent someone with Mild ME/CFS or Long Covid from becoming as severely ill as my son James, who is 100% bedrid-den, is to let them rest. Only extreme, radical rest will allow their bodies, their cells, to regroup and recover. A universal symptom of ME and Long Covid is Post Exertional Malaise (PEM). The body just seems to give out after exertion. If someone with mild ME or Long Covid is unusually tired at the end of a day of work, or from cleaning their home, going shopping, climbing stairs, attending a party... things they would normally have had no problem with... listen to them. Encourage them to stop, to get in bed and rest, and to stay there except for doing necessary things that won't exert enerov

CRASH
PREVENTION
BY GALEN WARDEN
From the forthcoming book, Dying to Live
The most urgent thing you can do to prevent someone with Mild #ME/CFS or Long Covid from becoming as severely ill as my son James, who is 100% bedrid-den, is to let them rest. Only extreme, radical rest will allow their bodies

I don’t think people realize how dark the mornings are going to be with DST. Not looking forward to it.

Danielle Smith’s cancer claims anger Alberta cancer patients A stage four cancer patient says she was shocked and outraged after hearing UCP leadership candidate Danielle Smith say in a Twitter broadcast last week that cancer is preventable up to the fourth sta...

I need to stop being shocked by DS. She also said cancer is within your control until stage four.

edmonton.citynews.ca/2022/07/29/d...

WHAT

This.

In fact, Ive never seen a community so unfairly treated by the state and abused for so long behave so civil and constructive as #pwME...

They know we cannot get out of bed because otherwise...

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018

“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

I’ll never understand why doctors refuse to do their job like this.

Something I appreciate about my ME specialist is that she doesn’t waste time performing empathy—which is what most doctors seem to think patients like me want. “If I say ‘that sounds so hard’ with my eyebrows crinkled, this bitch should be happy, right?”

Wrong. We just want doctors to do their job.

When people don’t respect you they’ll treat you terribly, blame you for their harmful behavior, & then convert any guilt they may feel into more hatred & disrespect towards you. It happens on an institutional level like this, & it happens on a personal level. And everyone with ME has experienced it