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Posts by Ella Inez

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Transferring IgG antibodies from patients with #LongCovid to mice recapitulates many symptoms
www.sciencedirect.com/science/arti...

4 weeks ago 173 60 5 2
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Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion‐Based Neuroinflammation Imaging Study Diffusion-based neuroinflammation imaging (NII) reveals widespread white matter abnormalities in ME/CFS patients, undetected by conventional DTI. NII metrics associate with mental health, disability ...

This study provides in vivo evidence of white matter neuroinflammation in #ME/CFS, characterised by cerebral edema (reduced NII-HR), cellular infiltration (reduced NII-RF) and axonal reorganisation (increased NII-FF). This suggests NII-derived indices may serve as sensitive biomarkers for

1 month ago 10 3 1 1
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‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

Es ist einfach ermüdend, wenn man die Geschichte von ME/CFS kennt und weiß, wie auch Medienstrategien an der Verharmlosung beteiligt waren. Lest gerne nochmal dazu den Artikel (2024) von George Monbiot:
3/3

1 month ago 86 11 1 0
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People Are Calling Meta Ray-Bans "Pervert Glasses" On Bluesky, users quickly embraced the term "pervert glasses" to refer to Meta's Ray Ban smart glasses, following a shocking investigation.

Make it stick.

1 month ago 10180 2893 175 345
Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast
Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast YouTube video by HLTH Compliance

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵

youtu.be/pk00btt7CVs?...

1 month ago 122 46 3 3

Some NHS GPs are still recommending graded exercise therapy to ME patients. It just happened to me. The guidelines changed in 2021. What can we do about this?

1 month ago 1 0 0 0
Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.

Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.

Some good news!

We do (🤞) seem to be at a turning point of decent research being funded for #ME

See S4ME forum post for more details:
🖇️ tinyurl.com/msbft7e6

1 month ago 43 11 0 0
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Is the OMF's ME/CFS BioQuest Study the Study We've All Been Waiting For? - Health Rising The Open Medicine Foundation's huge Bioquest project has the potential to transform ME/CFS patients experience with doctors, dramatically enhance research and get drug companies finally interested in ...

Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS

www.healthrising.org/blog/2026/02...

1 month ago 16 8 1 0

Update:

Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH.

www.gofundme.com/f/severemerg...

1 month ago 18 10 2 3
Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease.

Sequence ME & Long Covid is a £20 million research initiative designed to explore the root causes of ME and Long Covid using long-read, whole-genome sequencing.

Partners, The Schmidt Initiative for Long COVID and CODA have provided $200,000 and $50,000, respectively, to contribute towards the cost of this first phase.

Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease. Sequence ME & Long Covid is a £20 million research initiative designed to explore the root causes of ME and Long Covid using long-read, whole-genome sequencing. Partners, The Schmidt Initiative for Long COVID and CODA have provided $200,000 and $50,000, respectively, to contribute towards the cost of this first phase.

🧬 Phase 1 of whole-genome sequencing for ME and Long Covid is now funded for 2 years - building on DecodeME.

It’s the world’s largest study of its kind for any disease, but it’s a £20m project and much more support is needed.

I’ve just donated:
www.actionforme.org.uk/research-cam...

2 months ago 24 13 2 0

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.

Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.

archive.ph/J3Xv3

2 months ago 70 39 3 8
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Lost at sea: The Big Crash and the GP My last post explained how I became bedbound with ME. Here's what happened next.

Wrote about what happened immediately after I became bedbound with ME.

thepersonalme.substack.com/p/after-the-...

2 months ago 2 1 0 0
Purpose: 
Reduced cerebral blood flow (CBF) may play a role in the pathophysiology of postexertional malaise (PEM) in myalgic encephalomyelitis (ME). This case report aimed to determine the feasibility of measuring differences in blood flow to the head occur during PEM induced by 2-day cardiopulmonary exercise testing (CPET).

Methods: 
One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Blood flow was assessed using a novel in-ear device (Lumia Health), using photoplethysmography to estimate a relative flow index while participants were supine and during a 10-minute standing test before CPET. The person with ME showed a 34% decrease in work at the ventilatory anaerobic threshold (VAT), confirming PEM on day 2. During PEM, flow index decreased by 17% while supine and 23% during orthostasis compared to day 1. The nondisabled individual did not exhibit subjective or objective PEM (1% reduction in work at VAT) and experienced less than a 5% reduction in flow index while supine.

Results and Conclusions: 
Reduced blood flow to the head during PEM may partially explain ME symptomatology. The novel in-ear device shows promise as a diagnostic and biofeedback tool, warranting further research in larger studies.

Purpose: Reduced cerebral blood flow (CBF) may play a role in the pathophysiology of postexertional malaise (PEM) in myalgic encephalomyelitis (ME). This case report aimed to determine the feasibility of measuring differences in blood flow to the head occur during PEM induced by 2-day cardiopulmonary exercise testing (CPET). Methods: One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Blood flow was assessed using a novel in-ear device (Lumia Health), using photoplethysmography to estimate a relative flow index while participants were supine and during a 10-minute standing test before CPET. The person with ME showed a 34% decrease in work at the ventilatory anaerobic threshold (VAT), confirming PEM on day 2. During PEM, flow index decreased by 17% while supine and 23% during orthostasis compared to day 1. The nondisabled individual did not exhibit subjective or objective PEM (1% reduction in work at VAT) and experienced less than a 5% reduction in flow index while supine. Results and Conclusions: Reduced blood flow to the head during PEM may partially explain ME symptomatology. The novel in-ear device shows promise as a diagnostic and biofeedback tool, warranting further research in larger studies.

Interesting study & technology.

Hopefully it becomes widely available for clinical practice.

Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report

journals.lww.com/cptj/abstrac...

#MyalgicEncephalomyelitis #PwME #MEcfs #CFS

5 months ago 23 6 1 0
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"After more than a decade of engaging in shameless bothsidesism, whataboutism, and fanatical, greed-driven appeals to far-right eyeballs, America’s corporate, legacy media appears poised to fall victim to the grave, fascist threat it helped bring about"
zeteo.com/p/the-maga-f...

5 months ago 1234 295 40 16
076 - How brain inflammation causes anxiety
076 - How brain inflammation causes anxiety YouTube video by Jarred Younger, PhD

I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.

Turns out, this is very likely a symptom of ME/CFS. Such fun!

www.youtube.com/watch?v=Sg5q...

#MECFS #pwME #LongCovid #MentalHealth

5 months ago 10 5 1 0
Trial By Error: Some Thoughts on Ten Years of Trial By Error
1 Comment / By David Tuller / 25 October 2025
By David Tuller, DrPH

Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.

Trial By Error: Some Thoughts on Ten Years of Trial By Error 1 Comment / By David Tuller / 25 October 2025 By David Tuller, DrPH Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.

"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)

virology.ws/2025/10/25/t...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

5 months ago 16 7 1 1
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1) Remember the intramural NIH study about effort preference in ME/CFS?

Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

6 months ago 58 27 4 1
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1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.

They found that these fish swim less and have reduced oxygen consumption.

6 months ago 33 10 1 1
#IIMEC17  11 Clinicians' Panel Discussion
#IIMEC17 11 Clinicians' Panel Discussion Open Panel Discussion Chaired by Professor Andrew Wilson, UEA, UK More at https://investinme.org/iimec17-andrewwilson.shtml

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."

6 months ago 40 19 1 1

Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS

6 months ago 33 19 0 0

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

6 months ago 1 0 2 0
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Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.

6 months ago 6 2 4 0
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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...

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

7 months ago 5 3 0 0

😄

8 months ago 1 0 0 0
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Absolutely please tell me more! I wanna see letters fall off the ends of their names!

8 months ago 0 0 0 0
067 - New results: The ME/CFS brain is inflamed
067 - New results: The ME/CFS brain is inflamed YouTube video by Jarred Younger, PhD

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'

8 months ago 5 2 0 1

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

8 months ago 7 3 0 0

Oh my god noooo. That's truly heroic

8 months ago 1 0 0 0

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

8 months ago 2 0 1 0
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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

8 months ago 49 18 0 0