Alex

I basically just learnt yesterday that this is gastroparesis. It was all IBS to me. I think it’s a sign of PEM for me too, goes away on my “good days”.

Mysterious is one of the top words I’d like to ban in health reporting.

One of my earliest symptoms was difficulty eating. People made fun of me for being a slow eater. I don’t think I even bothered mentioning it to the doctor.

not my mom responding with “finally” when i mentioned i’d been taking some steps to make the HCQ project (book? 🙈) actually happen 🤡

Low iron levels resulting from infection could be key trigger of long COVID Problems with iron levels in the blood and the body’s ability to regulate this important nutrient as a result of SARS-CoV-2 infection could be a key trigger

Yeah it’s not new. This seems to be the same article, but it’s dated 2024:

www.cam.ac.uk/research/new...

I’ve got a “women’s problems” scandal for you: #ME/CFS.

#greatestmedicalscandal

A government inquiry in 2020 said an arrogant culture in which serious medical complications were dismissed as "women's problems" had contributed to a string of healthcare scandals over several decades.”

For every woman in the #ME & #LC community on #InternationalWomensDay
Endless gratitude to every one of you for your courage, strength, compassion & resilience
We're suffering due to widespread medical misogyny &
our resistance will change how medicine treats women everywhere💙

I feel like her writing never pays off because it’s too shallow.

I really enjoyed it. It’s easy on brain fog. Reminded me of the era where people were posting poetry on twitter, that was a fun time.

There’s an audiobook too, which is great for lots of people but I always think of people with ME who can’t read anymore.

kristinhoulihan.com

*spongebob background fish voice* how many times do we have to teach you this lesson, old man???

#GreatestMEdicalScandal

The service of reflection at St James's University Hospital gave local staff, patients and families a chance to "reflect on the sacrifices made" and recognise the ongoing impact of those living with long Covid. There are an estimated 1.9 million people in the UK living with long Covid, a condition that has more than 200 symptoms with no cure. Fran Haddock has had long Covid for three years and said there needs to be more awareness for those "living in this complete limbo". Haddock, 35, said: "I'm still seeing new people getting long Covid and entering the long Covid community now. "People are still getting sick long-term, like me with no treatment or cure and not knowing what my future holds."

#LongCovid

www.bbc.co.uk/news/article...

I’m surprised by this quote from Ziyad Al-Aly: “If in 2020 covid was a German shepherd, it's now a Chihuahua.” I saw him quoted a couple years ago telling people to mask again and he called repeat Covid infections ‘Russian Roulette’ because of long term conditions.

one of my former msw classmates is almost done with her phd and for one of her narrative methods courses she has to interview a chronically ill person and provide a transcript. i asked if she could do it written bc i cant speak much (due to my disability) and her prof said no LMAOOO!

Yep, I’ve done that one too! 😂

I have to be careful around people who are newly sick and especially who are newly recovered. Some of the worst bias and/or denial.

Love getting into a new podcast and then the host mentions a time they were blithely spreading COVID. What a weird time.

I’ve been struggling with the that idea that people prefer darker mornings in exchange for more light in the evening. And it just occurred to me, it’s because other people don’t have an energy limiting chronic illness.

She issues a call to contact your MP about living with ME, or about knowing someone who does.

It’s all very reminiscent of ME. This is scary, so it’s better if it’s not real.

So many “Disability Advocates” so little masking.
Obviously there are folks for whom masking is not feasible but I doubt they are in the majority.
There is wholesale denial of the ongoing pandemic at every intersection and it’s damaging to everyone.

In reality having #ME/CFS feels very much like trying to live with a ball and chain attached to your feet, a choking collar and a very short leash obstructing oxygenated blood circulating up to one’s brain and muscles . All invisible to the naked eye, but very much rooted in physiology.

Ugh, I had this early on when I got sick, it’s terrible.

This (2020) is fascinating to read now:
"What is about to be unleashed on American society will be the greatest campaign ever created to get you to feel normal again. It will come from brands...from government...from each other...from the left and from the right."

archive.is/uiC06

YES! I am blown away that my rheumatologist's office doesn't require masks (especially when flu/COVID/RSV cases are high, but really it should be all the time at a place doing infusions) and that I'm almost always the only one wearing one. So many of us are immunosuppressed!!

New England cherishes its local elections—but many disabled voters are locked out “It's a really heartbreaking example of who gets left behind in systems that are not built for everyone.”

For a few hundred years, towns across New England have conducted Town Meeting Days via floor votes, which can be inaccessible to disabled people. This situation shows how accessibility and tradition can go head-to-head. My latest for @motherjones.com.

www.motherjones.com/politics/202...

I have family in Abu Dhabi so this is personal for me & is making my extremely underfunded neuroimmune disease worse. Fuck the US, man. Stop bombing people, stop abandoning people, & #TripleTheNIHBudget 😭

A lot of healthcare workers come into comment sections and tell us they’ll oblige people who ask, but I’m constantly hearing stories about how people are asking!

I dislike the term “invisible illness.” It’s more like “we just haven’t spotted it yet.”

Most illness were invisible until we figured out ways to see them.