Todo empieza en una enzima llamada GAA (alfa-glucosidasa ácida). 🧬 En las personas con Pompe, esta enzima falta o no funciona bien, lo que provoca que el glucógeno se acumule en las células y dañe los músculos. Entender nuestro cuerpo es el primer paso para empoderarnos.

໊ She’s not a monster she’s a mother

it’s been two years and i still think about the choice to write “i died ON the altar waiting for the proof” rather than AT, because instead of a bride she became a sacrifice

I have a fantasy where a pain psychologist is writhing on the ground with a kidney infection whilst people around them are telling them to mind-body their way out of it.

🙋‍♀️Las personas con EM necesitamos ayuda! La Asociación Española de EM (ONG PEM) participa en esta campaña de Cinfa. Los 100 proyectos más votados recibirán financiación. Puedes votar fácilmente aquí: lavozdelpaciente.cinfa.com/admin/s-23842 (te explico cómo votar en el siguiente tuit 👇)

She's bedbound, alone & running out of medication. #MECFS patient with #severe ME & spinal injuries has no income while awaiting disability approval. Every dollar keeps her lights on and her fed. Please give or share. 🔗 gofund.me/5e08a095e #pwME #GoFundMe MEI Account

One of the most true but awful quotes I saw on Reddit was someone replying to a post about not being able to pace because of kids, family, responsibilities: “If you refuse to pace, the illness will show you how little of your life was truly non-negotiable.”

If you are in crowded places with poor ventilation, #WearAMask. Because it helps keep you and your community safe from #COVID19, flu and other respiratory illnesses. And remember these other measures to help protect yourself and others from COVID-19, flu, measles and other

Por los asociados que la padecen y por todas aquellas personas ajenas a nuestra asociación que también sufre esta enfermedad.

#EncefalomielitisMialgica #MyalgicEncephalomielitis #pwME ONG PEM Contamos con tu voto...

My wife has Lyme disease and other co-infections, but it doesn’t show up through standard antibody testing. You need a more expensive test to find it. Today I asked Secretary Kennedy what we can do to make sure people with unexplained symptoms are getting thorough and accurate testing

I first posted about using Green light years ago now and a green light developed for migraine has been a go-to for me for years. Cort Johnson wrote an article on it as well - its not as fringe as you might think. x.com/chydorina/stat…

I woke up not feeling Poisoned for the first time in 5 years and we are still trending yall GOD IS SO GOOD

Adi el Grande Que se sepa que el pueblo de neardnetales donde vivían madre e hija, que es Benejúzar en Alicante, defendían al violador, que se llamaba Antonio Cosme, se metían con la niña llamándola "la violá", decían que iba provocando, una niña con 13 años. Manada de indigentes mentales.

World Health Organization (WHO) Western Pacific Send | Unsend (Sophia) It’s brilliant to see World Health Organization (WHO) recommending masks - but frustrating to see surgical masks depicted. Surgical masks do NOT provide adequate protection from airborne transmission. Respirator-type masks (FFP2/3, N95) should be recommended to protect the wearer from airborne viruses.

¿Sabías que la enfermedad de Pompe fue la primera enfermedad lisosomal para la que se desarrolló un tratamiento? 💉 La Terapia de Reemplazo Enzimático (TRE) marcó un antes y un después, permitiendo que muchos pacientes sigan caminando y respirando por sí mismos.

The first trailer for ‘COYOTE VS ACME’ has been released. In theaters on August 28.

Excellent piece in New Scientist on exercise research in #LongCovid and #MECFS. Highlights studies ignoring post-exertional malaise, the PACE trial, and comments from David Tuller, Tom Kindlon and Todd Davenport. Full article: archive.is/2026.04.22-142…