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Adrienne Oneil @profadrienneoneil.bsky.social · May 21

www.hcplive.com/view/rapamyc...

Now culminating in a clinical trial led by the Simmaron lab in NYC

Rapamycin Improves PROMs in Patients With ME/CFS in Early Trial

Statistically significant improvements were seen in BAS, MFI, SF-36 subscores, SSS fatigue, disrupted sleep. PEM, and orthostatic intolerance.

www.hcplive.com

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Adrienne Oneil @profadrienneoneil.bsky.social · May 21

Keeping a keen eye on the therapeutic potential of rapamycin-an immunomodulator 1st approved as a prophylactic against organ rejection.

Two new pilots show that: 1) it didn’t penetrate the BBB but improved inflammatory biomarkers and 2) fatigue, cognition in #MECFS

www.nature.com/articles/s43...

Rapamycin treatment for Alzheimer’s disease and related dementias: a pilot phase 1 clinical trial - Communications Medicine

Gonzales et al. conducted an open-label phase 1 clinical trial of rapamycin for mild cognitive impairment and dementia due to Alzheimer’s disease. Rapamycin is not detected in cerebrospinal fluid befo...

www.nature.com

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Reposted by Adrienne Oneil

Communications Medicine @commsmed.nature.com · May 21

🚨 NEW RESEARCH! ⚕️ 🩺

DeLong et al. find associations between physical #multimorbidity and #depression using the UKBiobank data.

https://bit.ly/4kz23rD
#MentalHealth #PhysicalHealth

Cluster and survival analysis of UK biobank data reveals associations between physical multimorbidity clusters and subsequent depression - Communications Medicine

DeLong et al. investigate several clustering techniques to identify patterns of physical multimorbidity. They find several clusters which align to known body systems and use survival analyses to determine which clusters are most associated with depression.

bit.ly

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Adrienne Oneil @profadrienneoneil.bsky.social · May 10

Amazing! I’ll be printing this out and taking with me to all appointments

Bateman Horne Center @batemanhornecenter.bsky.social · May 9

The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF

Graphic with a stethoscope and a doctor’s arm, displaying the text 'CLINICAL CARE GUIDE Managing ME/CFS, Long COVID, & IACCs.' The Bateman Horne Center and MERC logos are at the bottom, with a background of a deep blue gradient.

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Adrienne Oneil @profadrienneoneil.bsky.social · May 6

Done! Thank you for using your previous energy for advocacy 🌺

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Adrienne Oneil @profadrienneoneil.bsky.social · Apr 30

Wow congrats on an amazing outcome! I hope she is the first of many who benefits from CRISPR

Adrienne Oneil @profadrienneoneil.bsky.social · Apr 26

So tragic. I hope she is at peace now 🌺

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Reposted by Adrienne Oneil

Tom Kindlon @tomkindlon.bsky.social · Apr 22

A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid

Info in German
sozialhummel.de/wohnprojekt-...

Some info & discussion in English
www.s4me.info/threads/hous...

Image from Science for ME update

#MEcfs #SevereME

Germany
A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer, in collaboration with Sozialhummel, plans to build barrier-free apartments that are optimally tailored to the needs of people with severe ME/CFS. Interested parties can join a waiting list.

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Adrienne Oneil @profadrienneoneil.bsky.social · Apr 16

Daisy having the best day ever, scoring a slice of pepperoni on her walk 🍕

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Reposted by Adrienne Oneil

Katie Klocksin, by the wayside @katieklocksin.bsky.social · Apr 8

NIH observational study finds that one of every 22 covid infections causes myalgic encephelomyelitis:

www.livescience.com/health/coron...

1 in 22 COVID survivors develop debilitating chronic syndrome

A study suggests that catching COVID-19 significantly raises the risk of developing ME/CFS (formerly called "chronic fatigue syndrome"), a typically lifelong condition that can be debilitating.

www.livescience.com

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Reposted by Adrienne Oneil

Danielle Beckman @daniellebeckman.bsky.social · Apr 6

My favorite from today. #HandsOff #HandsOff2025

A person wearing a respirator and a sign that reads: Science keeps your dumb ass alive

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Reposted by Adrienne Oneil

Danielle Beckman @daniellebeckman.bsky.social · Apr 4

This whole conversation about #LongCovid...
Research published in Nature Medicine estimates Long Covid has an annual economic impact of approximately $1 trillion—equivalent to about 1% of the global economy. www.nature.com/articles/s41...

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 29

Thanks the Age for handing my story with care and Congrats Dr Armstrong & team on this exciting finding. This research isn’t possible without Open Medicine Foundation funding #MECFS research where NHMRC won’t.

Newspaper👇
www.theage.com.au/national/vic...

Research👇
www.nature.com/articles/s43...

It took 11 years for Adrienne’s illness to be diagnosed. A new computer model could change everything

Chronic fatigue syndrome is notoriously difficult to diagnose, but a new computer-assisted model can predict it with 85 per cent accuracy.

www.theage.com.au

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Reposted by Adrienne Oneil

BK. Titanji @boghuma.bsky.social · Mar 23

99.4% of new drugs approved by the FDA are the product of NIH funded research.
Remember this every time you see another headline on the NIH funding cuts.
It will directly impact YOU.
#ScienceNOTSilence

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 21

Sending hugs from Australia 💪

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 21

It was a fabulous session! Thank you both for being such fierce advocates for rigorous ME/CFS & LC research

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 20

Oh Anastasia, I hope he’s ok. Thinking of you and Harris x

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Reposted by Adrienne Oneil

Danielle Beckman @daniellebeckman.bsky.social · Mar 15

#LongCovidAwarenessDay2025

Amy on twitter: I've been 90-99% bedbound for nearly 3.5 years. People say "it's the vax" - I never got the vax. People say "it's laziness" - I used to be an athlete.
No more excuses.
We need help NOW.
#5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 12

So so cool!! Yay for medical science!

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 9

Forest therapy 😍🌺🐨🌈

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Adrienne Oneil @profadrienneoneil.bsky.social · Mar 6

Ping @ameliamcg.bsky.social

Adrienne Oneil @profadrienneoneil.bsky.social · Mar 3

“My average (long COVID) patient is previously very fit, very successful, and desperate to get back to normal life,” he says. “The people I’m looking at are actually incredibly motivated, the movers and shakers of society, and we lose them to our detriment.” 😭😭💔💔

The Guardian @theguardian.com · Mar 2

‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten

Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened

www.theguardian.com

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Reposted by Adrienne Oneil

Danielle Beckman @daniellebeckman.bsky.social · Feb 25

My friends are dying. People are dying of #LongCovid and #MECFS while society keeps ignoring their existence. Rest in peace, Faraz. Sorry we failed you.

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Adrienne Oneil @profadrienneoneil.bsky.social · Feb 25

New to behavioural mental health trials and unsure how to assess and monitor harms?

With MAGNET Clinical Trial Network, we have developed a “How To” guide with step by step recommendations & tips. We hope you find it helpful!

#behaviouralscience #behavioralmedicine

doi.org/10.1177/0004...

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Adrienne Oneil @profadrienneoneil.bsky.social · Feb 19

@jodieingles27.bsky.social @scartledge.bsky.social @sarahgauci.bsky.social 💔

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