TamaraDNomad

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

This is Isla at age 8.

She died at age 18 with severe ME/CFS.

Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

Isabel Ramírez-Burnett Remission Biome is a community science, patient and caregiver-led project of the non-profit, decentralized research organization, Renegade Research. We work in collaboration with researchers and clini...

My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social

Donate to my birthday fundraiser if you are able. Any amount helps

tinyurl.com/Renegage-Res...

Brown skin woman on iPad in bed. There’s an iv pole in the background

Brown skin woman on iPad in bed. There’s an iv pole in the background and tubes connected to her arm

What “back to work” looks like for some of us severely disabled from long COVID ❤️

Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME

Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME

Physically and emotionally destroyed. #MECFS is reducing me to ashes. Don’t feel able to do anything #pwME #MillionsMissing

Today's action is the single largest mass-illegalization event in US history.

350,000 people woke up this morning with legal status, living and working here with official permission. They'll go to bed as undocumented immigrants facing deportation.

🚨🚨🚨 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.

Biopsychosocial approaches to ME/CFS provide neither a cure nor hope

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/

Mere Survival: Notes on an Enduring Illness by Walker Storz - Today's American Catholic "It is unnerving to realize how quickly one can adapt to this, to accept sleepwalking rapidly through highlight reels of weeks, then months, then years."

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.

#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.

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

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 👀

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

Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Vidya Krishnan for this” in red text. On left side, an image of Vidya Krishnan as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.

Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Joia Mukherjee for this” in red text. On left side, an image of Joia Mukherjee as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.

Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate John Green for this” in red text. On left side, an image of John Green as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.

Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Maria Smilios for this” in red text. On left side, an image of Maria Smilios as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.

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)

Patients with severe ME/CFS need hope and expert multidisciplinary care Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen Myalgic...

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/

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!

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.

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

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

#MillionsMissing

@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

Square text box with blue background. Text in white saying 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

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

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer - PubMed Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatrician...

The lesson is that yes, kids can get infection-associated chronic diseases like #MECFS. Predisposing factors include hypermobility or orthostatic intolerance.

Learn so kids in your life don't have to go through what I did.

The Pediatric Primer:
pubmed.ncbi.nlm.nih.gov/28674681/

(14/14) #MedSky 🧪

Anyway, that's what I was thinking as I was gasping for air for hours today, along with: I have to find another way to address autonomic symptoms.

And hoping that this doesn't precipitate such a bad crash that I can't make #MillionsMissing this year. (13/14) 🧵

And what I think is: I could have had a diagnosis of #MECFS at age 11 and known what to watch for when I started getting sick as an adult.

When I think of how differently my life could have gone if any of the adults around me had really listened, I'm angry on behalf of child-me. (12/13) 🧵

This is part of why I find the two spikes in diagnosis so relevant and interesting.

But what a lot of people may not know is that many folks experience symptoms as kids and then remit before experiencing much worse symptoms the second time around, as adults. (11/14) 🧵

bsky.app/profile/did:...

Since my mom isn't normally out of her mind, I can only imagine what the doctor must've said to her.

I had long since forgotten this to the point that #MECFS didn't even occur to me as a potential diagnosis when I was in my late 20s/early 30s when I was much, much sicker. (10/14) 🧵

I went from a plump, happy kid at the top of the 'norm' BMI down to the lower middle of the 'norm' BMI. To the point that when I returned home, people did double-takes and told me my face looked different.

We ate McDonald's salads and Carnation Instant Breakfasts all summer. (9/14) 🧵