chrissie4btrwrld.bsky.social
@chrissie4btrwrld.bsky.social
Reposted
Available to buy now: One Red Leaf at a Time Greetings Cards.

All proceeds go to our #MEcfs research @uoe-igc.bsky.social.

Thank you @drjogreer.bsky.social & Dr Clare Raynor!

theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis
Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.
theredtreeandme.substack.com
November 16, 2025 at 12:36 PM
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MP Tessa Munt has tabled ME/CFS debate in Westminster Hall this week - template letter with important points from Dr Charles Shepherd

Please write to your MP (via email) and ask them to attend the debate on Wednesday 19th November at 4.30pm.

https://meassociation.org.uk/crlc

#pwME
MP Tessa Munt has tabled ME/CFS debate in Westminster Hall this week - The ME Association
MP Tessa Munt has tabled a debate on ME/CFS in […]
meassociation.org.uk
November 17, 2025 at 10:41 AM
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1) 🇩🇪 Some really good news! Germany plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid.

They are calling it "The National Decade Against Post-Infectious Diseases"
November 14, 2025 at 8:30 AM
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8) Link to the paper:

Shahbaz et al. 2025. Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS.
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Shahbaz et al. find that female long COVID patients with ME/CFS exhibit heightened inflammation, altered hematopoiesis, disrupted hormone levels, and neuroinflammatory gene signatures. In parallel, our study identifies sex-specific immune and hormonal biomarkers that correlate with clinical symptoms, supporting the need for tailored therapeutic strategies, including consideration of hormone replacement therapy.
www.cell.com
November 12, 2025 at 10:08 AM
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Today, hundreds of millions face #MECFS & #LongCOVID without FDA-approved treatments. Until December 2, your support goes 3X further to advance critical research and bring us closer to answers.

💙Donate today: ow.ly/rZEb50Xr8wI.
November 13, 2025 at 3:30 PM
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8 ) The full interview with Dr. Missailidis was published by ME Group Australia and can be watched here:
Understanding ME: Investigating cellular and body-wide features of ME
Presenter: Dr Daniel Missailidis, PhD Dr Daniel Missailidis is a postdoctoral research fellow and molecular biologist at La Trobe University in Melbourne, Australia. Daniel has researched ME since 2016 and completed his PhD in 2021, having published 11 research papers on ME or Long COVID to date.
www.youtube.com
November 3, 2025 at 9:21 AM
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🙏 to everyone who took part in the LCK Summer Poster Competition, our judges were blown away by the creativity and powerful messaging in the 30+ entries
🏆 Here’s the age 5-11 category winner, designed by Clara M, Age 10

🎨 Poster Title: “Understand We Need Your Support”
November 4, 2025 at 7:47 AM
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1) Researchers tested an new in-ear device to estimate blood flow to the brain.

In an ME/CFS patient blood flow decreased by 23% after an exercise test compared to only 5% in the healthy control participant.
October 31, 2025 at 3:01 PM
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We've just launched the first large, site-less (home, direct to participant) randomized trial for treatment of #LongCovid, testing tirzepatide (a GLP-1 drug) vs placebo. Please help spread the word
www.scripps.edu/news-and-eve...
Scripps Research scientists launch new digital clinical trial to test repurposed drug for long COVID symptom relief
www.scripps.edu
October 31, 2025 at 5:07 PM
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How do we love what we can't save — a planet, or a body?

I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system...
#MyalgicE #mecfs #ClimateAction #climatecrisis
Two Systems in Collapse
What illness can teach us about responding to climate change
jrehmeyer.substack.com
October 30, 2025 at 3:47 PM
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Children with Long Covid Heard At The UK COVID Inquiry | Long Covid Kids | 23rd October 2025

Available on #YouTube & #TicTock

www.youtube.com/watch?v=3wT4...

#LongCovidKids #LongCovid

@longcovidsupport.bsky.social
Children with Long Covid Heard At The UK COVID Inquiry | Long Covid Kids | 23rd October 2025
YouTube video by Long Covid Kids
www.youtube.com
October 23, 2025 at 2:28 PM
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ME Connect (helpline & email service) is available via our freephone number to offer support and information.

** Freephone number - 0808 801 0484 **

You can also email us at meconnect@meassociation.org.uk

Opening times: https://meassociation.org.uk/me-connect/

#pwME
October 24, 2025 at 1:03 PM
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Inside Israel’s elite military academy accused of extremism.

Report on #c4news tonight from Secunder Kermani.

[full 15 min version]

www.channel4.com/news/inside-...
Inside Israel’s elite military academy accused of extremism
Graduates from the elite Bnei David academy in Israel serve in some of the most senior positions within the Israeli army.
www.channel4.com
October 21, 2025 at 9:22 PM
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“Islamophobia is rife in our society and I say this as a Jewish man.”

Rising star and new leader of the UK’s Green Party Zack Polanski joined @mehdirhasan.bsky.social to discuss the dangerous anti-Islam rhetoric in UK politics.

zeteo.com/p/it-makes-m...
October 21, 2025 at 10:33 PM
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Great summary of striking work that:
1 Brings experts using cutting edge technology on other diseases to ME/CFS.
2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood.
3 Looks in living bodies, not samples in the lab
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.

Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
October 20, 2025 at 8:12 PM
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This post has had quite a bit of attention on other platforms, so I just want to highlight and thank @investinmeresearch.bsky.social They’ve been running the #IIMEC conference every year since 2006, entirely organised by volunteers. A huge effort supporting #MECFS research and pushing for change.
“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.”

Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.

Thanks to @mecfsskeptic.bsky.social for finding the clip.
October 18, 2025 at 6:09 AM
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Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said:

"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
#IIMEC17 11 Clinicians' Panel Discussion
Open Panel Discussion Chaired by Professor Andrew Wilson, UEA, UK More at https://investinme.org/iimec17-andrewwilson.shtml
youtu.be
October 16, 2025 at 4:51 PM
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As if they keep writing all these headlines - and our membership numbers and polling just keeps shooting up. 🚀

Now at 110,000. Over 55% increase in just one month!

Lower bills. Fund NHS. Tax the super rich.

Join.greenparty.org.uk
October 14, 2025 at 3:38 PM
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UK Action for ME Big Survey 2025

The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University.

www.actionforme.org.uk/research-cam...

#MEcfs #PwME #CFS
2025 Big Survey
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
www.actionforme.org.uk
October 12, 2025 at 12:31 PM
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Simon Wessely — the controversial psychiatrist once dubbed “Britain’s most hated doctor” has been appointed vice chair of Labour’s review into overdiagnosis of mental health and neurodivergence.

www.benefitsandwork.co.uk/news/controv...
Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
www.benefitsandwork.co.uk
October 6, 2025 at 5:48 PM
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ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
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🧵
"The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades)

alifehidden.com/2024/11/05/r...

An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about

#MEcfs #CFS #PwME

1/
October 4, 2025 at 8:07 PM
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And don’t wait for them to start hacking up a lung! People can spread airborne diseases like COVID and flu *before* they start showing symptoms.
Lots of coughing & sniffles going on around you? Stay purr-fectly protected by wearing a mask! 😷🐈

Wearing a high-quality N95 mask protects you from respiratory viruses like flu, COVID-19 and RSV.

📲 https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Respiratory-Viruses/When-and-Why-to-Wear-a-Mask.aspx
September 27, 2025 at 10:13 PM
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1. I've long contended that austerity doesn't save money. It merely transfers costs from one group (the very rich, who would otherwise pay more tax) to others. Last night was a powerful reminder of that. Before I go further, I should say I’m fine. Just a black eye, cuts & bruises, no serious harm. 🧵
September 26, 2025 at 9:33 AM
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"Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022.

#pwme #myalgicE #millionsmissing

link.springer.com/article/10.1...
Burden of Disease in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Scoping Review - Applied Health Economics and Health Policy
Objective Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic and complex multi-system disease characterised by symptoms such as post-exertional malaise, fatigue, cognitive impairment and pain. Diagnosis is based on international consensus criteria, and no curative treatment is available. In the USA, its prevalence is estimated at 0.42% among adults, with women affected three times as often as men. Prevalence is expected to increase due to the COVID-19 pandemic. In addition to its severe symptoms, ME/CFS has a substantial economic impact. This scoping review aimed to systematically examine the global health, social and economic burden of ME/CFS. Methods We conducted a systematic literature search following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines in six databases and supplemented it with a citation search. We assessed study quality using a modified version of the Mixed Methods Appraisal Tool. Results We included 20 studies that assessed costs (n = 16), disability-adjusted life years (DALYs) (n = 3), employment rates (n = 1), and school attendance (n = 1) as indicators of disease burden. Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022. Conclusion ME/CFS imposes a substantial health, social and economic burden of disease. Discrepancies in estimates are probably due to differences in study samples, methodologies, cost components, and healthcare systems. Because ME/CFS is assumed to be underdiagnosed, its true burden may be even higher.
link.springer.com
September 24, 2025 at 12:23 PM