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@valebodi.bsky.social

1.5K followers 1.2K following 3.5K posts

Surviving MyalgicE & AAG to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = MEdical apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031

www.tandfonline.com

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valebodi.bsky.social @valebodi.bsky.social · Jan 7

#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners.

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Adam @abrokenbattery.bsky.social · 4h

It’s @davetuller1.bsky.social‘s birthday today, so I’ve donated to his fundraising campaign so that he can carry on his important work calling out bad research. Happy Birthday David!

crowdfund.berkeley.edu/project/47768

David Tuller's Trial by Error Fall 2025

Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

crowdfund.berkeley.edu

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valebodi.bsky.social @valebodi.bsky.social · 3h

💙💙💙💔💙💙💙😢💙💙💙

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Long Covid Advocacy @longcovidadvoc.com · 3h

Forming a strong #LongCovid & #pwME community on Bluesky has always been a priority for us.

To help people find each other we're trialling a follow back friday!

How to take part 👇

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youngEMERG @youngemerg.bsky.social · 4h

📢 IGNITE ME Journal Club Alert!
Join our next session for early-career #MECFS researchers on Oct 13, 2025, at 11am EST 🗓️

💡 We’ll explore the future of IGNITE ME and introduce a pre-print journal club concept!
💻 Zoom: 940 7510 9828 | 🔑 972035
#IGNITEME #LongCOVID #ResearchCommunity

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valebodi.bsky.social @valebodi.bsky.social · 3h

They most probably are, but this test deals w/ epigenetics which are different from SNPs.

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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 23h

Full article: Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study www.tandfonline.com/doi/full/10....

Proud to have another article published thanks to all the co-authors and especially all the participants

Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study

People living with ME/CFS and LC frequently live with post-exertional malaise (PEM), which is associated with impairments in aerobic metabolism. They often use pacing with a heart rate monitor (HRM...

www.tandfonline.com

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🎃It was a Hotblack night🦇 @invalid-handle.com · 3h

Joan is fundraising to help support this trial taking place in Norway

The people behind it are sound and the science looks promising so whatever the results we will learn more about ME/CFS. From the pilot it looks there may also be a real chance of a treatment for some

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Dr. Lucky Tran @luckytran.com · 21h

All we are saying, is give peace a chance

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LPJ Lab - Neuroimmunometabolism @lpjlab.org · 5d

New Nature Metabolism review breaks down the history, role, and therapeutic promise of itaconate. Learn how this metabolite exerts potent anti-inflammatory effects—a crucial mechanism for future drug development!
#Immunometabolism #Inflammation
www.nature.com/articles/s42...

Metabolic Messengers: itaconate

McGettrick et al. provide a succinct yet broad overview of the immunometabolite itaconate as an immunomodulatory molecule.

www.nature.com

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valebodi.bsky.social @valebodi.bsky.social · 14h

med.stanford.edu/sgtc/researc...
#ME/CFS #ItaconateShunt
@openmedf.bsky.social @janetdafoe.bsky.social

Research Projects

Publications and Patents of Ron W. Davis, Stanford Genome Technology Center

med.stanford.edu

valebodi.bsky.social @valebodi.bsky.social · 15h

The reason for a second conversation with @ninaweber.bsky.social:
The question about how Mila is doing now, and the publication of the care guidelines with @mecfs.at and @kathrynhoffmann.bsky.social from @meduniwien.ac.at.
#ME/CFS #pwME #SevereME
@sabinehermisson.bsky.social

Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 1d

Der Anlass für ein zweites Gespräch mit @ninaweber.bsky.social:
die Frage, wie es Mila inzwischen geht, und die Veröffentlichung des Pflegeleitfadens mit @mecfs.at und @kathrynhoffmann.bsky.social von @meduniwien.ac.at.
public-health.meduniwien.ac.at/abteilungen/...

valebodi.bsky.social @valebodi.bsky.social · 15h

archive.ph/2025.10.08-1...

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Colleen Steckel @colleensteckel.bsky.social · Feb 25

What do we know about #MyalgicEncephalomyelitis? We know a lot more than many realize.

See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.

open.substack.com/pub/colleens...

Myalgic Encephalomyelitis IC Primer

A powerful tool to educate about ME

open.substack.com

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 1d

An excellent article by Laurie Jones, executive director of @meaction-mi.bsky.social, about the difficulties that proposed Medicaid work requirements would cause the ME/CFS community.

MedPage Today @medpagetoday.com · 1d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Kathleen Bachynski @bachynski.bsky.social · 1d

A study of nearly 300,000 people published today in the New England Journal of Medicine found “that last season’s 2024–2025 mRNA COVID vaccines reduced people’s risk of emergency department visits by 29 percent, their risk of hospitalizations by 39 percent and their risk of death by 64 percent.”

Annual COVID Vaccines Save Lives, New Study Shows

A new study shows that receiving an updated COVID vaccine reduced people’s risk of severe disease and death in all age groups, regardless of immunity from prior infection or vaccination

www.scientificamerican.com

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TORO @destinytoro.com · 20h

I haven't have a commission or shop sale in 2.5 months! And my Ko-fi goal hasn't gone above 5% in over 6 months. My birthday is next week and I'd love to breathe above water, even for the tiniest moment 🤏🎂

I have new items in the shop and several slots open for commissions:

destinytoro.com

TORO

Nature and Indigenous Taino Illustration, Animation, and Patterns from Borikén aka Puerto Rico. All flora and fauna are based on species in the Caribbean. Prints, notebooks, mugs, and other functional...

destinytoro.com

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Ruth Ann Crystal @drruth.bsky.social · 21h

The economic costs and social costs of splitting the MMR into 3 separate vaccines.

Thomas [redacted] DO @tom.medsky.social · 1d

The United States gives approximately 6.6 million doses of MMR per year. Each single dose vial contains 1.76 grams of glass, rubber, and aluminum. Add another 3 grams each for the syringe and needle.

This one change will add 62.8 metric tons of SHARPS BIOHAZARD WASTE per year.

Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 1d

The MMR shot is safe and effective, and there is no credible evidence otherwise.

Breaking MMR into three shots means 3x more copays at the doctor’s office, 3x more hours of missed work, 3x more bummed out kiddos, and probably more than 3x as many kids who aren’t fully vaccinated.

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Tom Kindlon @tomkindlon.bsky.social · 21h

"Life between hope and fear": ME Centraal @mecentraal.bsky.social , a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

ME Centraal, a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME, to be published on or around 8 August, Severe ME-day. Marieke Suur, a patient with severe ME, wrote the following.

Writing an article about severe ME is not that easy, because how can I express in a few sentences what this life means to me?

The weird thing is that since I was diagnosed with ME early in 2020, I went from moderate to severe ME within a month (that’s what happens when you miss the last step of a flight of stairs and have to undergo two operations and ‘rehabilitate’ for six months). I was relieved with this clear diagnosis after years of searching, but this relief soon turned into despair.

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valebodi.bsky.social @valebodi.bsky.social · 21h

“Well said! It’s not rest, a strange feeling to never or rarely feel rejuvenated. Like a permanent sick “rest” without recharging and feeling rested. Very unnatural & not a full life. It’s actual torture in a sense. Limited life force. People will never understand.”

#ME/CFS #pwME

valebodi.bsky.social @valebodi.bsky.social · 1d

When “Rest” does not feel like an accurate term (in regard to #ME/CFS)

To me, rest has a positive connotation. My idea of resting when I was healthy was taking a long hot shower, taking a bubble bath, having a spa day, lounging on the beach, reading a book, or binge watching a tv series in bed.

From the cfs community on Reddit

Explore this post and more from the cfs community

www.reddit.com

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Nicolas Robert @robertsnickc.bsky.social · 7d

I am going to venture that the man who sat on the ground in his tipi meditating on life & its meaning, accepting the kinship of all creatures, & acknowledging unity with the universe of things, was infusing into his being the true essence of civilization.

~ Standing Bear

#Photography, J.K. Dixon

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Nicolas Robert @robertsnickc.bsky.social · 6d

‘Cherries in a Grey Bowl.’ #Painting by Tony de Wolf #art

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Nicolas Robert @robertsnickc.bsky.social · 5d

Ay! idleness! the rich folks never fail
To find some reason why the poor deserve
Their miseries.

~ Robert Southey (1774-1843)

#Drawing, Robert Southey by Robert Hancock, 1796.

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Nicolas Robert @robertsnickc.bsky.social · 5d

When all the trees have been cut down, when all the animals have been hunted, when all the waters are polluted, when all the air is unsafe to breathe, only then will you discover you cannot eat money.

~ Cree Prophecy

#Photography, Cree girl (1928).

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valebodi.bsky.social @valebodi.bsky.social · 1d

the severely ill ME/CFS patient comprising loss of force, fatigue and fasciculations.

valebodi.bsky.social @valebodi.bsky.social · 1d

ATPase and to increase reactive-oxygen species that further inhibit it. Even at rest, muscle is in a state of depolarization. Depolarization and mitochondrial damage reinforce each other. Thus, dysfunction of Na+/K+-ATPase as a single mechanism can explain the different skeletal muscle symptoms of

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