Adrienne Oneil

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/view/rapamyc...

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

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...

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...

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.

🚨 NEW RESEARCH! ⚕️ 🩺

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

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

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

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

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

So tragic. I hope she is at peace now 🌺

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.

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

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

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.

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

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

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

My favorite from today. #HandsOff #HandsOff2025

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...

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.

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...

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

Sending hugs from Australia 💪

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

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

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

#LongCovidAwarenessDay2025

So so cool!! Yay for medical science!

Forest therapy 😍🌺🐨🌈

Ping @ameliamcg.bsky.social

“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.” 😭😭💔💔

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.

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...

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

Heartfelt | Col Clausen + Laura Aisbett Follow the latest news headlines from Australia's most trusted source. Read in-depth expert analysis and watch live coverage on ABC News.

Last night’s Australian Story following the lives of two people who lost their spouse to sudden cardiac arrest was so powerful. A reminder of the importance of the work we do in CVD research

www.abc.net.au/news/2025-02...

#suddencardiacarrest #cpr #cardiac

Great paper Sarah! #behaviouralscience #nutrition #cardiovasculardisease

The irony of the richest man in the world almost single-handedly destroying an agency designed to help the world’s poor, so that the U.S. federal budget has more room for another giant tax cut for the richest man in the world and his pals, should not be lost on anyone. [Cartoon by Mike Luckovich]

Haha very happy to come to Sydney Anastasia! 🌺🤩

More on Cochrane's actions (see December and January news) The Sick Times "Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review Great article by David Tuller with a longer recap of the Cochrane saga. Two members of the writing team that was appointed by Cochrane to update the review provide comments: Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies" Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients" Tuller concludes: ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well." Article l Thread Science for ME Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it Trish Davis and Maree Candish, on behalf of the Science for ME committee, have submitted a detailed set of five complaints with supporting evidence. The submission concludes: "We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients." Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-opening the decision not to withdraw the 2019 review. Complaint | Discussion thread

More information on negative responses to Cochrane scrapping their plan to do a new review of exercise therapy for CFS

Links:
thesicktimes.org/2025/02/04/r...

www.s4me.info/threads/s4me...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS