tamaradnomad.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

New “cool” symptom: it seems if someone would be hitting my internal ear with a very tiny hammer. #MECFS thank you for making my life interesting all the time

submitted 4 hours ago • 0 comments

I'm consulting with my doc but also need hive input: I've started Mestinon for #POTS & I'm only on day 3 of 15 mg & considerably anxious/wired/irritated (despite all my relaxation tricks). Perhaps my body can't handle more acetylcholine? Or could it be a temporary side effect? #MECFS

submitted 4 hours ago • 11 comments

If you work at the Washington Post, now is the time to resign. You’re a part of this now.

submitted 6 days ago • 4000 comments

Good morning to everyone who understands the assignment.

submitted 5 days ago • 98 comments

‼️‼️‼️🥰‼️‼️‼️

submitted 7 days ago • 14 comments

Thirty years ago today. The Guardian, UK. 1st March 1995. #cfsme #mecfs #myalgice #myalgicencephalomyelitis

submitted 7 days ago • 1 comment

No longer delayed; it's now canceled. These people are finding some really unique "solutions" to the Social Security issue, one infectious disease outbreak at a time.

submitted 7 days ago • 2 comments

Is there any wereable that #pwME can recommend to manage #MECFS? It needs to be available in Europe. #MilliomsMissing #MyalgicE #spoonie #NEISvoid

submitted 6 days ago • 2 comments

Having this horrifying #symptom as if all the blood of my body was being drained until my veins compressed and collapsed. Anyone felt something similar? What it’s this?? #MECFS #MillionsMissing #MyalgicE #pwME #NEISvoid

submitted 10 days ago • 1 comment

@johndeeretractor.bsky.social THANK YOU

submitted 10 days ago • 3 comments

Today is one of those days when I want to grab by the shoulders every person I know and shout them how I feel about ME sucking life of my body and ask them to do something. I have no energy though 🥴 #MECFS #pwME #MillionsMissing #spoonie #chronicallyill

submitted 10 days ago • 0 comments

Ich habe gewählt. 💚🌻 Beide Stimmen grün. Jetzt genieße ich die Sonne.

submitted 13 days ago • 0 comments

President Zelenskyy has been one of the greatest leaders of our time, guiding Ukraine through the darkest period of its recent history, rising up to Russia’s unwarranted aggression, being an inspiration to the Ukrainian people and ensuring that Ukraine’s voice is heard on the world stage.

submitted 17 days ago • 2879 comments

UW researchers are looking for people with disabilities and/or chronic illnesses to join a participatory research project focused on using digital technologies to navigate care in the US. Learn more and/or enroll: infograph.venngage.com/pl/GkdlQ9mh6HY #pwME #research #disability #ChronicIllness

submitted 16 days ago • 1 comment

This can’t be true.

submitted 17 days ago • 0 comments

The deaths of innocent kids Kfir and Ariel Bibas in captivity is a war crime & a heartbreaking tragedy. Whether they were killed in an Israeli airstrike, as Hamas claims, is frankly irrelevant. There was never any justification whatsoever for kidnapping kids in the first place.

submitted 17 days ago • 66 comments

#MECFS sucks every sign of life you have. It’s an illness that’s not compatible with living. Your body and your mind are in a prison where they are being tortured, every hour, every minute, every second #MEAwarenesshour

submitted 17 days ago • 0 comments

I roar and I fight but the ableist enemy is stronger and stronger…I’m losing my mind and my physical health. I just want to be healthy again to be able to advocate without hurting myself #MECFS #pwME #MillionsMissing #MyalgicE #spoonie #anxiety #mentalhealth

submitted 18 days ago • 0 comments

I’m demonstrating virtually outside the 🇩🇪 @bundestag.de. Day 1️⃣2️⃣6️⃣ 📢 #CallForPublicHealthAction 📢 Demonstration for the right to #CleanAir, vaccines, evidence-based infection control, scientifically sound public education, adequate care & biomedical research for #LongCovid / #MECFS

submitted 32 days ago • 1 comment

Overview of the symptoms required for an ME/CFS diagnosis using the CCC From new review: The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (#MECFS): from biochemistry to electrophysiology translational-medicine.biomedcentral.com/articles/10.... #CFS

submitted 32 days ago • 1 comment

The Star-Gazette, New York. 4th February 1992. #cfsme #mecfs #myalgice #myalgicencephalomyelitis

submitted 32 days ago • 0 comments

🎥 #Filmtrailer #ChronischKrank #ChronischIgnoriert #Dokumentation 90 Minuten #SaveTheDate arte ab 24.02 2025 in der Mediathek, Sendetermin am 25.02.2025, um 22.40 Uhr im arte TV Programm 1/5 youtu.be/SbCwtaDL4P4

submitted 32 days ago • 2 comments

Today one of my best friends got a great new job, an achievement. I’m happy to share his joy but got me thinking about the lack of achievements I have. I hate it, I want to be successful too. Right now I can’t even manage my #MECFS …what a mess. #pwME #MillionsMissing #chronicillness

submitted 32 days ago • 2 comments

Days with a crash and people know, because I’ve posted about how bad I feel. Not even a single message asking me how I am, no support message. Where is empathy?? #pwME #PEM #MECFS #MillionsMissing

submitted 35 days ago • 4 comments

27% of #MEcfs patients, identified in "Green" group, have a mutation in the AKA1 gene, resulting in an increased risk of mitochondrial dysfunction and consequent CD8 T-Cell Exhaustion. @precisionlife.bsky.social are involved in the @decodemestudy.bsky.social study. precisionlife.com/beginning-to...

submitted 44 days ago • 1 comment

Surviving with #MECFS is like being Schrödinger’s cat, being simultaneously dead and alive.

submitted 44 days ago • 0 comments

Alright #LongCovid and #MECFS friends… Does anyone know of good databases that include authentic stock photos of ME and LC? I know the German Association for #MECFS did this one a few years back. Any others?

submitted 44 days ago • 5 comments

The question you have to answer when waiting six months for an appointment to treat a condition you’ve had for 20 years. #mecfs #chronicillness #NEISvoid

submitted 46 days ago • 2 comments

Thirty years ago today. The Birmingham Evening Mail, England. 20th January 1995. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

submitted 47 days ago • 0 comments