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skellou.bsky.social
@skellou.bsky.social
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Reposted
tessamunt.bsky.social
My reflections after today’s APPG ME meeting….

‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!
December 10, 2025 at 10:21 PM
Reposted
abrokenbattery.bsky.social
The Welsh Parliament debate on ME/CFS is now on YouTube. Adam Price MS led the debate, calling for better care, recognition, and support across Wales

youtu.be/akICL-DXfp8?...

Link the motion
record.senedd.wales/Motion/8884
Welsh Parliament Debate on ME/CFS December 2025
YouTube video by Broken Battery
youtu.be
December 10, 2025 at 5:48 PM
Reposted
meassociation.org.uk
Imperial College London: £1.1m awarded to investigate links between ME/CFS and Long Covid

"A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid."

https://tinyurl.com/mr3ybhwv

#MECFSResearch #MECFS #pwME #LongCovid
£1.1m awarded to investigate links between ME/CFS and Long Covid
A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid.
tinyurl.com
December 10, 2025 at 10:51 AM
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europeanmealliance.bsky.social
10 Dec #HumanRightsDay
Human rights mean recognising suffering, and acting to end neglect

𝙏𝙝𝙞𝙨 𝙘𝙖𝙣𝙣𝙤𝙩 𝙟𝙪𝙨𝙩 𝙗𝙚 𝙬𝙤𝙧𝙙𝙨

They must be 𝒕𝒓𝒂𝒏𝒔𝒇𝒐𝒓𝒎𝒆𝒅 into actions for people with #mecfs, and their carers

europeanmealliance.org/humanrightsd...
#DignityForAll
#HealthEquity
#EuropeanMEAlliance
International Day of Human Rights - an image marking this day with a quote from EMEA from its article highlighting what EMEA is doing to make progress in research and treatment of ME
December 10, 2025 at 7:34 AM
Reposted
erictopol.bsky.social
A new review of post-infection syndromes, including #LongCovid, and its diverse immunologic manifestations www.cell.com/trends/immun... by @virusesimmunity.bsky.social and colleagues
December 4, 2025 at 3:47 PM
Reposted
precisionlife.bsky.social
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
December 4, 2025 at 8:00 AM
Reposted
cgatist.bsky.social
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 8:13 AM
Reposted
openmedf.bsky.social
In today’s video interview with all of OMF’s directors, they discuss the connections between their research, and Dr. Meadows shares a visual representation of some of those connections. 🧩

👉 Watch the interview and TRIPLE your impact today: www.omf.ngo/interview-wi...
The graphic shows how a failure to recover from triggers and risk factors (top left) leads to a complex web of dysregulated systems, and the interactions between these systems yield the disease phenotype that can vary from person to person.
December 2, 2025 at 5:26 PM
Reposted
thereforme.bsky.social
Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.
Advent Reflection for the ME Community Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming. And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost. (cont'd) As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of FII. (cont'd) But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn. (cont'd) This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith. Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again. With love to all in the community, Jenny
November 30, 2025 at 9:01 AM
Reposted
tessamunt.bsky.social
A week ago the Westminster Hall debate on ME was held.

Thank you to all those who have watched the debate and sent messages of encouragement.

I’ve now written to the minister, Ashley Dalton, about the meeting she promised. And I have sent her the questions in my speech. 👇🏽

I’ll keep you posted.
November 26, 2025 at 5:26 PM
Reposted
tomkindlon.bsky.social
UK:
Transcript for 1-hour Myalgic Encephalomyelitis debate in Westminster Hall (UK Parliament) on Wednesday 19 November 2025 led by @tessamunt.bsky.social

hansard.parliament.uk/commons/2025...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK Parliament logo Hansard UK Parliament Hansard Commons: 19 November 2025 Westminster Hall Myalgic Encephalomyelitis Myalgic Encephalomyelitis Volume 775: debated on Wednesday 19 November 2025
November 20, 2025 at 8:38 PM
Reposted
abrokenbattery.bsky.social
Today’s Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour.

youtu.be/wZFEUnjWgOA?...
Westminster Hall Debate on Support for People with ME/CFS - November 2025
YouTube video by Broken Battery
youtu.be
November 19, 2025 at 6:25 PM
Reposted
tomkindlon.bsky.social
UK: Westminster Hall debate: #MEcfs
Wednesday 19 November at 4:30pm.
This debate will be led by Tessa Munt MP

Live
www.parliamentlive.tv/Event/Index/...

Replay
www.parliamentlive.tv/Search?Keywo...

References
commonslibrary.parliament.uk/research-bri...
whatson.parliament.uk/event/cal53589

#PwME
Parliamentlive.tv
Westminster Hall
www.parliamentlive.tv
November 18, 2025 at 6:06 PM
Reposted
claguenjc36.bsky.social
Please fill in this survey if you are a HCP with #longcovid or #ME. Please share widely thank you
physiosforme.bsky.social Physios For ME @physiosforme.bsky.social · Nov 18
🚨New survey alert 🚨

The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME

All information can be found on the landing page here.

www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 8:00 PM
Reposted
cgatist.bsky.social
Well deserved strategic funding - €50 million *per year* for a decade - on ME/CFS and Long Covid research. Spent wisely this could be a game changer. Germany now leads & other countries need to follow. Goal to “decipher the causes and mechanisms and develop new treatments”. #MEcfs #longcovid
November 14, 2025 at 11:15 AM
Reposted
abrokenbattery.bsky.social
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.

Addressing what they call “one of the greatest public health challenges of the 21st century.”

www.zeit.de/politik/deut...
Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern
Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.
www.zeit.de
November 14, 2025 at 6:50 AM
Reposted
karenlhargrave.bsky.social
📣 Help us spread the word!

Yes I know it’s October - but at @thereforme.bsky.social HQ it’s already beginning to look like Christmas 🎄

📆 You have until Oct 26 to help us find our #ThereForME 2025 Advent Calendar stars!

🌟
thereforme.bsky.social ThereForME @thereforme.bsky.social · Oct 11
We know that support for people with ME isn't anywhere near as good as it should be - & we're working hard to change that.

But this Christmas we wanted to take a moment to celebrate those in the UK who are in our corner.

Can you help us find our #ThereForME advent calendar stars?
A large white star with an orange question mark in the centre. It is on a pale blue background with many small stars. Beneath it “ThereForME Advent Calendar 2025”
October 11, 2025 at 2:41 PM
skellou.bsky.social
www.justgiving.com/crowdfunding...

Funds going to the Norwegian Daratumumab trial which is now underway.

#MEcfs
Help raise £1000 to support promising medical research into ME – JustGiving Crowdfunding
Iʼm raising money to support promising medical research into ME. Support this JustGiving Crowdfunding Page.
www.justgiving.com
October 10, 2025 at 6:40 AM
Reposted
tomkindlon.bsky.social
(UK) “John Milne MP and cross party parliamentarians write to Wes Streeting with concerns about the ME/CFS strategy”

www.libdemvoice.org/john-milne-m...

In Liberal Democrat Voice

#MEcfs #PwME #CFS
John Milne MP and cross party parliamentarians write to Wes Streeting with concerns about the ME/CFS strategy
In a joint letter to Health Secretary Wes Streeting under a title “Concerns regarding ME/CFS Strategy in the Final Delivery Plan”, John Milne MP has questioned “the absence of strategic approach to bi...
www.libdemvoice.org
September 21, 2025 at 12:26 PM
Reposted
youngemerg.bsky.social
👋 Meet young EMERG and get to know us!

1/3

#youngEMERG is part of European ME Research Group (EMERG), a network of researchers from across Europe focused on advancing knowledge and understanding in #MECFS.

youngemerg.com/aboutus.shtml
youngemerg.com
September 10, 2025 at 10:55 AM
Reposted
mecfsskeptic.bsky.social
1) A research team from Arizona university used Invasive cardiopulmonary exercise testing (iCPET) in ME/CFS and Long Covid patients.

They found that muscle oxygen diffusion was the most impaired parameter.
September 3, 2025 at 3:48 PM
Reposted
johnmilnehorsham.bsky.social
Today I've joined Action for ME in writing to @rthonwesstreeting.bsky.social on the chronic underfunding of ME/CFS research. Despite their prevalence, these conditions are still poorly understood and are without effective treatment.
September 3, 2025 at 3:00 PM
Reposted
jeremy-jeffs.bsky.social
LIVES WE CANNOT LIVE: Oxo Tower Gallery, 24-28th Sept.

Everyone I photographed talked about the devastating impact that #MECFS has on their lives. I've been trying to show what they lost.

#millionsmissing #documentaryphotography #PwME
August 24, 2025 at 9:43 AM
Reposted
decodemestudy.bsky.social
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator).

We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM
Image of Chris Ponting next to quote "This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people's ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research"
August 12, 2025 at 10:11 AM
Reposted
#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social

Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/

youtu.be/CGUmcB_YIaA?...
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
youtu.be
August 10, 2025 at 12:41 PM