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skellou.bsky.social
@skellou.bsky.social
18 followers 82 following 1 posts
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lucibee.bsky.social
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n
Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B
February 9, 2026 at 3:57 PM
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thereforme.bsky.social
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.

She explains why CHC funding for very severe ME is an issue that deserves attention.

🔗 in next post 👇
A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
February 10, 2026 at 9:19 AM
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mecfsskeptic.bsky.social
1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands.

In this new thread, we made a brief summary of his presentation.
February 7, 2026 at 1:54 PM
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aryback.bsky.social
1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome is a disease of uncertain aetiology that affects up to 400,000 individuals in the UK. Exposure of cultured cells to the sera of people with ME...
doi.org
February 4, 2026 at 10:21 AM
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rfh1955.bsky.social
'ME and Long Covid have brought my children's lives to a standstill'.

www.bbc.co.uk/news/article...
Long Covid and ME patients 'hopeful' about Rosetta Stone study
The £1.1m Rosetta Stone study hopes to make a breakthrough by comparing both conditions.
www.bbc.co.uk
February 2, 2026 at 1:16 PM
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tessamunt.bsky.social
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
January 21, 2026 at 10:30 PM
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mecfsskeptic.bsky.social
UPDATE: The German Ministry of Research (BMFTR) announced that it is funding a phase II study on Uplizna (Inebilizumab).

It targets the CD19 marker present on B-cells during most of the maturation process (see graph below).

Source:
www.bmftr.bund.de/DE/Forschung...
January 14, 2026 at 2:38 PM
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abrokenbattery.bsky.social
BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid.

youtu.be/eu8Lj_R-OtQ?...
BBC Inside Science - £1.1M ME/CFS and Long Covid Study
YouTube video by Broken Battery
youtu.be
January 8, 2026 at 5:20 PM
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tomkindlon.bsky.social
Highly recommended 👏 #MyalgicEncephalomyelitis #PwME #ChronicFatigueSyndrome #MEcfs #CFS
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · Dec 30
1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye.
December 30, 2025 at 5:15 PM
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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