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Ella Inez @ellainez.bsky.social · 23h

Wow that's major! Fingers crossed it keeps working for you. I'll let you know how I get on with it. Other Mito supplements have been too stimulating for me so I'm gonna go carefully

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Ella Inez @ellainez.bsky.social · 12d

Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.

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Reposted by Ella Inez

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 23d

The Norwegian ME Association is raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research, Fluge, Mella et al. Target: US$ 2.6m/ Euro 2.2m/ £1.9m. ME-fondet is accepting international donations.
tinyurl.com/3h3x9mz6

English The ME-fund

ME-fondet is a Norwegian non-profit foundation dedicated to supporting biomedical research on Myalgic Encephalomyelitis (ME/CFS). We raise funds for high-quality, independent studies that seek to unco...

tinyurl.com

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Ella Inez @ellainez.bsky.social · Aug 17

😄

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Ella Inez @ellainez.bsky.social · Aug 12

Absolutely please tell me more! I wanna see letters fall off the ends of their names!

Ella Inez @ellainez.bsky.social · Aug 11

youtu.be/wuzmYJxM-r0?...

'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'

067 - New results: The ME/CFS brain is inflamed

YouTube video by Jarred Younger, PhD

youtu.be

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Ella Inez @ellainez.bsky.social · Aug 11

'IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation'

sarah boothby @swastrosarah.bsky.social · Aug 11

Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME
www.medrxiv.org/content/10.1...

ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion

Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulin...

www.medrxiv.org

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Ella Inez @ellainez.bsky.social · Aug 9

Oh my god noooo. That's truly heroic

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Ella Inez @ellainez.bsky.social · Aug 9

🫣I barely managed to watch the whole two minutes! What an unbearable supercilious bunch.

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Reposted by Ella Inez

Billy Hanlon @bhanlon15.bsky.social · Aug 8

Today we honor Severe ME.

We hear you.
We see you.
We care.

Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME

#SevereME #SevereMEDay2025

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Ella Inez @ellainez.bsky.social · Aug 8

Blue pigs? What in the Parable of the Sower? Booktok warned us.

www.independent.co.uk/news/world/a...

Warnings issued in California over wild pigs found with blue meat

The California Department of Fish and Wildlife said it had received reports of the bizarre occurrence in March

www.independent.co.uk

Reposted by Ella Inez

Vlad Vexler @vladvexler.bsky.social · Aug 7

The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism.

ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s.

So why do we get these headlines?

#pwME

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Reposted by Ella Inez

New Scientist @newscientist.com · Aug 6

Key genetic differences involved in the immune and nervous systems have been found in people with chronic fatigue syndrome.

People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition

www.newscientist.com

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Ella Inez @ellainez.bsky.social · Aug 6

www.decodeme.org.uk/x-marks-the-...
'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS'

‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’

X marks the spot where ME/CFS biology can be discovered - DecodeME

06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave the...

www.decodeme.org.uk

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Ella Inez @ellainez.bsky.social · Jul 24

Unfortunately mHBOT seems to help so I now I have to buy a chamber. Eek! #MECFS

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Ella Inez @ellainez.bsky.social · Jul 15

This sounds major.

'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'

Open Medicine Foundation (OMF) @openmedf.bsky.social · Jul 15

OMF’s Collaborative Center at Montreal, directed by Dr. Alain Moreau, published a paper on their study looking at SMPDL3B as a biomarker and potential therapeutic target in a subset of people with #MECFS.

👉 Read the paper summary: ow.ly/QvsT50WpZXl.

Dr. Alain Moreau is smiling and pointing at a scientific poster in a bright lab setting. He is wearing glasses, a blue suit jacket, and a light blue shirt. Overlaid text reads: “SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis.” A button below says “Read More >>” and the URL www.omf.ngo/montreal-new-publication is displayed.

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Ella Inez @ellainez.bsky.social · Jul 9

I'm starting HBOT today for ME /CFS and SFN. What are your experiences with it, good or bad? I think I'm already getting my hopes up before it's even started 😬

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Reposted by Ella Inez

Open Medicine Foundation (OMF) @openmedf.bsky.social · Jul 3

🎥 Video Update: A Muscle Biopsy Study to Understand the Molecular Mechanisms of #PEM

👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.

Graphic with two headshots—Danielle Meadows and David Systrom in a white lab coat—under a banner that says “UPDATE.” Text reads: “A Muscle Biopsy Study to Understand the Molecular Mechanisms of PEM.”

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Reposted by Ella Inez

Long Covid Advocacy @longcovidadvoc.com · Jun 21

Our deep dive of the biomarker study by Ponting:

1. They clearly state it's a disease with strong female bias.

2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
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www.embopress.org/doi/full/10....

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Reposted by Ella Inez

Chris Ponting @cgatist.bsky.social · Jun 20

📢 Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...

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Ella Inez @ellainez.bsky.social · Jun 18

Perfectly said.

Adam @abrokenbattery.bsky.social · Jun 18

Highlights from Prof Chris Ponting’s presentation to the joint APPG on ME & Long Covid: He made clear that graded exercise is harmful, and warned that despite rising numbers, there’s still no research strategy, no effective treatments, and almost no funding. #MECFS #LongCovid

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Reposted by Ella Inez

DCapTO @dcapto.bsky.social · Jun 5

“there is a reservoir of the HIV in the body, capable of reactivation, that neither the immune system nor drugs can tackle. Now researchers…have demonstrated a way to make the virus visible, paving the way to fully clear it from the body.” 🤯

If pans out, could cure all cancers, Long Covid, HSV too!

Adipocere @scalpelfun.bsky.social · Jun 5

Fortunately science marches on overseas.

Breakthrough in search for HIV cure leaves researchers ‘overwhelmed’

Exclusive: Melbourne team demonstrates way to make the virus visible within white blood cells, paving the way to fully clear it from the body

www.theguardian.com

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Ella Inez @ellainez.bsky.social · Jun 4

“it is intellectually embarrassing to suggest that ME is a psychological illness” Exactlyyy!

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Reposted by Ella Inez

George Monbiot @georgemonbiot.bsky.social · Jun 1

Every day a new atrocity in #Gaza. And still the UK supplies lethal weaponry to the Israeli government. There is a term for this: complicity in genocide.

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Ella Inez @ellainez.bsky.social · May 15

This!

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