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tamaradnomad.bsky.social
Disabled advocate - #Interiordesigner - Nomad - #Anthropology student - Multi local - #SWYer - #Fibro + #MECFS - 1 of the #MillionsMissing + #Disabledguerrera
136 posts 201 followers 128 following
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Physically and emotionally destroyed. #MECFS is reducing me to ashes. Don’t feel able to do anything #pwME #MillionsMissing

submitted 2 days ago • 5 comments

🚨🚨🚨 The Supreme Court has just allowed Trump to strip as many as 350,000 people of legal status, effectively IMMEDIATELY. Every Venezuelan granted TPS through the July 31, 2023 designation has been rendered undocumented as of now, significantly increasing the undocumented population.

submitted 3 days ago • 87 comments

The BMJ has published our response to the opinion piece by Miller et al.. “The solution that Miller et al. propose—the interpretation of ME/CFS as "biopsychosocial"—is in fact itself a major burden for ME/CFS sufferers.“ Biopsychosocial approaches to ME/CFS provide neither a cure nor hope. 1/

submitted 3 days ago • 12 comments

I am so sorry to say that Walker Storz, a person with severe ME, has passed away. Walker was an essayist, a poet, a musician, and someone I chatted with many times via email. A beautiful essay he wrote in 2022: www.todaysamericancatholic.org/2022/05/mere... May his memory be a blessing.

submitted 3 days ago • 4 comments

#MECFSAwarenessMonth – Day 20 2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.

submitted 3 days ago • 0 comments

It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social

submitted 8 days ago • 14 comments

Friends, please spread the word that e. is offering to match donations to MEAction, OMF or any c3 org that works on ME/CFS—and then her employer will also match that! The employer match has a limit but hers does not 👀

submitted 8 days ago • 1 comment

Hey 👋 @johncusack.bsky.social You’re a Jo(h)n on our radar 👀 thesicktimes.org/2025/03/31/t... Will you look into #GreatestMEdicalScandal & help us bring #MillionsMissing back to safety (and life)?🙏🛟Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

submitted 8 days ago • 1 comment

I’m sending out a @johnvsjonvsme.bsky.social #MillionsMissing #DisabilitySOS to health justice leaders #EndTB - doctors, authors, and advocates whose work I appreciate immensely: @joiamukherjee.bsky.social @mariasmilios.bsky.social @johngreensbluesky.bsky.social @vidyakrishnan.bsky.social (1/8)

submitted 8 days ago • 1 comment

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has www.bmj.com/content/389/... 1/

submitted 8 days ago • 15 comments

F*ck the BMJ. Their timing is despicable and cruel. To not only write but commission an opinion piece on ME Awareness week, an emotionally triggering time for most #pwME, featuring someone who promotes pseudoscience and debunked studies. Do no harm? More like do as much harm as possible!

submitted 8 days ago • 3 comments

It’s ridiculous that ME can even take language away. I was fluent in German to the point I was able to think in German and comfortably navigate the bureaucracy and living in Wien. But now I’m bedridden in a French speaking place and no energy to maintain my German. So it’s slowly slipping away.

submitted 8 days ago • 2 comments

When I first got #MyalgicEncephalomyelitis in 1991, the CDC estimated that 200,000 Americans had it. Now they put that figure at 3.35 million & most researchers think it's far higher. The CDC & NIH each committed institutionalized malpractice re post-infectious illness. #MillionsMissing Day

submitted 10 days ago • 1 comment

🟦La #EncefalomielitisMiálgica es una ENFERMEDAD NEURO-INMUNO-ENDOCRINO-METABÓLICA.

submitted 10 days ago • 1 comment

#MillionsMissing

submitted 10 days ago • 6 comments

@monicagarciag.bsky.social hoy es el día mundial de la #encefalomielitismialgica. Cientos de miles de pacientes son mal tratados por la sanidad por falta de conocimiento. Usted no ha hecho hoy ni una mención. Escúchenos, nos morimos en vida. Esto no es vivir, es solo sufrir #EMSFC

submitted 10 days ago • 0 comments

Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot

submitted 11 days ago • 1 comment

The scariest symptom for me is air hunger. I experience this when the air pressure drops precipitously, because when air pressure is lower, there is less oxygen in each breath. When you already struggle with oxygenation, the result of getting a little less O2 in each breath can be dramatic. 🧵

submitted 12 days ago • 7 comments

Danke Berlin 💙 @liegenddemo.bsky.social Fotos: @mariahwa.bsky.social #MECFS

submitted 12 days ago • 3 comments

Jena und ganz Deutschland legt sich hin - und setzt bei der #LiegendDemo2025 ein Zeichen für mehr Pflege, Forschung und Engagement für ME/CFS. #MECFS, #LongCovid und #PostVac sind keine Randthemen. Sie betreffen Hunderttausende – und werden oft noch übersehen. (1/3)

submitted 12 days ago • 7 comments

#ME #MECFS #MECFSAwarenessday #Liegenddemo @liegenddemo.bsky.social LiegendDemos in Berlin, Fulda, Jena, Augsburg heute am 10.5.2025 #MEAwareness Demonstrations in Germany on 10th May 2025

submitted 12 days ago • 10 comments

Severe #MECFS patient from #Ukraine is looking for help. His parents don’t believe in the illness. Anyone with information in Ukrainian or that could speak Ukrainian to help him? #pwME #SevereME #MillionsMissing #NEISvoid #help #Ukraine

submitted 16 days ago • 2 comments

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS

submitted 19 days ago • 2 comments

he’s right and he’s right to say it

submitted 28 days ago • 272 comments