iiinova — where your digital self keeps evolving

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Tatiana Trifan #FBLC @tatianatrifan.bsky.social · 20h

"Helicobacter pylori bacteria and human papillomavirus (HPV) combined accounted for more than an estimated 1.5 million cancer cases. And 360,000 cancer cases were linked to hepatitis B infections, and 260,000 cases were caused by the Epstein-Barr virus."

emea01.safelinks.protection.outlook.com

One in eight new cancers are likely caused by infections—there’s an easy way to protect yourself

Many cancers associated with infection are preventable

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valebodi.bsky.social @valebodi.bsky.social · 20h

Fake it till you make it More like fake it * until you cannot make it anymore * pretending to be well and pushing through #ME/CFS #pwME #ICD-10G93.3 #ICD-10G93.32 #ICD-118E49

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/09/2026

The 2026 Stanford Community Symposium recordings are now on YouTube. Every talk is now online, including Danielle Meadows, PhD, OMF's VP of Research Programs and Operations, on the clinical trial landscape in ME/CFS and Long COVID. ▶️ ow.ly/E7Zk50ZSFZy

Announcement for 2026 Stanford Community Symposium recordings available on YouTube featuring Ronald W. Davis, PhD, and Danielle Meadows, PhD.

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valebodi.bsky.social @valebodi.bsky.social · 29/09/2026

Measles is a grown-up problem, too. Are you at risk? 4 in 10 US measles cases this year are in adults According to CDC's latest data, 38% of confirmed measles cases in 2026 (1,305 of 3,471) are in people 20 and older, up from 29% in 2025. Adults are being hospitalized at a rate of 12%, about

cidrap.umn.edu

CIDRAP Op-Ed: Measles is a grown-up problem, too. Are you at risk?

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Jessica Ellis @baddestmamajama.bsky.social · 24/09/2026

The truth is, you can belittle maskers, shrug off disabled people, and call us all crazy a million times, but you’re going to have to live in the world you’re building with these choices, and outcomes don’t care that your views are popular right now. www.cidrap.umn.edu/covid-19/mor...

cidrap.umn.edu

More than 1 in 10 US healthcare workers report ongoing long-COVID symptoms, study finds

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Chris Ponting @cgatist.bsky.social · 29/09/2026

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential. #MEcfs #PRIME26 #LongCovid

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Chris Ponting @cgatist.bsky.social · 29/09/2026

Dr Katharine Cheston on the @actionforme.bsky.social 2025 Big Survey Results. 5,424 people, 85.1% female; 18.4% v/severe. She is "shocked and appalled" by the data: by people's experience living with #MEcfs. Headline results will be released later in 2026. #pwME #PRIME26

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ME/CFS Science @mecfsscience.org · 29/09/2026

1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).

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valebodi.bsky.social @valebodi.bsky.social · 29/09/2026

Full Program of PRIME International Symposium Video recordings will available #ME/CFS #ICD-10G93.3 #ilICD-10G93.32 #ICD-118E49 @actionforme.bsky.social @decodemestudy.bsky.social @cgatist.bsky.social @aryback.bsky.social www.actionforme.org.uk/wp-content/u...

actionforme.org.uk

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Action for ME @actionforme.bsky.social · 29/09/2026

Day 2 of the PRIME International Symposium! Today's programme focuses on current ME research and collaboration with people with lived experience. Sessions include the Research Involvement Hub, Big Survey findings and emerging research. actionforme.org.uk/prime #PRIMESymposium #MECFS #MyalgicE

PRIME International Symposium promotional graphic highlighting Day 2, focused on current ME research, patient and public involvement, and impact, taking place 28-29 September 2026.

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Adam @abrokenbattery.bsky.social · 29/09/2026

“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.

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valebodi.bsky.social @valebodi.bsky.social · 29/09/2026

From the archive Long COVID Is Being Erased — Again By Ed Yong in The Atlantic 21 April, 2023 “LC is a huge impediment to the normalization of COVID. It’s an insistent indicator the pandemic is not actually over; that policies allowing the coronavirus to spread freely still carry a cost”

theatlantic.com

Long COVID Is Being Erased—Again

What was once outright denial has morphed into a subtler dismissal.

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Tom Kindlon @tomkindlon.bsky.social · 29/09/2026

From the US Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing journals.physiology.org/doi/10.1152/... Screenshot from Science for ME update #MEcfs #PwME #CFS

Hemodynamic Phenotyping in ME/CFS and ANOCA: Complementary Insights from Coronary Function Testing and Invasive Cardiopulmonary Exercise Testing — Mackay et al
"Invasive cardiopulmonary exercise testing (iCPET) in patients with concurrent ME/CFS and ANOCA reveals a primary peripheral, not cardiac, limitation to exercise."

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valebodi.bsky.social @valebodi.bsky.social · 29/09/2026

Endothelial dysfunction in #ME/CFS patients 🇳🇴 Ø. Fluge, O. Mella et al. ME/CFS patients had reduced macro- and microvascular endothelial function, indicating that vascular homeostasis may play a role in the clinical presentation of this disease. #FMD #PORH

pmc.ncbi.nlm.nih.gov

Endothelial dysfunction in ME/CFS patients

A few earlier studies have found impaired endothelial function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The present study investigated large-vessel and small-vesse...

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C.H. Romatowski @chromatowski.bsky.social · 28/09/2026

For what it’s worth, according to the National Academy of Sciences, Engineering and Medicine (NASEM) definition, this also counts as Long Covid—not just new symptoms but also worsened existing ones. If you have ever wondered if you’re part of the LC cohort.

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Action for ME @actionforme.bsky.social · 18/09/2026

📢 New self‑advocacy resource now available: Impact Statement Template. Our new resource helps people with ME communicate how ME affects them and what support they need. Download here 👇 www.actionforme.org.uk/resource/imp...

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Action for ME @actionforme.bsky.social · 28/09/2026

Today marks the start of the PRIME International Symposium, bringing together researchers, industry and people with lived experience to explore ME research and build collaborations. www.actionforme.org.uk/register-for... #PRIMESymposium #MECFS #MyalgicE

PRIME International Symposium promotional graphic highlighting Day 1 and the launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium, taking place 28-29 September 2026.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

Two signals in TMEM106B & VWDE locus. Associations affect gene regulation not protein sequence. Genome wide: the pituitary tissue is the most enriched in gene expression. Is #MEcfs genetics similar to other diseases? Yes! Long Covid and fibromyalgia have strong genetic correlations w MEcfs.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

Matthias Wielscher (Vienna) showing significant genetic associations to ME/CFS via rare gene disruptive variants in UK Biobank to C2orf66 and OBSCN genes. Wishes to use long read Oxford Nanopore Technologies approach in a replication study.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

New results. Eleven associations! Focuses on EXD3 Val540Met. (NB: unpublished results that need replication.) Genetic overlap with neuronal, immune, endocrine and sleep traits. EXD3 missense variant in exonuclease catalytic cleft. Immune function? #Prime26

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Chris Ponting @cgatist.bsky.social · 28/09/2026

Now launches the new consortium. Its point is to identify #MEcfs pathomechanisms, susceptibility and recovery. 60,542 cases and 2.8 million controls. Well powered! Case definition: diverse info, not all optimal.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

Now up: Hannah Ollila (Helsinki) launching the new international Genetics Epidemiology of ME/CFS (GEM) consortium. Contrasting the genetics & infection trigger of narcolepsy vs #MEcfs. Narcolepsy: HLA-DQB1*06:02 carriers & autoimmunity. Talking about the importance of whole genome sequencing.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

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valebodi.bsky.social @valebodi.bsky.social · 28/09/2026

When Measles’ fear was correctly featured in Tom & Jerry 31 October 2019 Measles erases immune ‘memory’ for other diseases Results from tests of unvaccinated children and monkeys come as measles cases spike around the world. www.nature.com/articles/d41...

youtu.be

Tom & Jerry | Doctor Jerry in the House! 🩺 | Classic Cartoon | WB Kids

YouTube video by WB Kids

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Institute of Genetics and Cancer @uoe-igc.bsky.social · 28/09/2026

Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social and Joshua Dibble who are all involved in this meeting.

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Emerge Australia @emergeaustralia.bsky.social · 27/09/2026

If you’re living with ME/CFS, long COVID, or want to volunteer as a ‘healthy control’ for medical research studies, becoming an AusME Registry participant is the simplest way to get involved in research! Sign up today and make a difference! Link in bio.

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Tom Kindlon @tomkindlon.bsky.social · 28/09/2026

The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, & Switzerland the opportunity to participate in research through home visits severe-me-registry.de #SevereME #MEcfs #CFS #PwME #VerySevereME #ChronicFatigueSyndrome

severe-me-registry.de

Severe & Very Severe ME Research Registry

Das Severe and Very Severe ME Research Registry verbindet ME Schwer- und Schwerstbetroffene mit biomedizinischer, häuslicher Forschung.

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Tom Kindlon @tomkindlon.bsky.social · 28/09/2026

Stanford's Genome Technology: Center Community Symposium on the Molecular Basis of ME/CFS Recordings from the symposium sessions are now available. www.youtube.com/playlist?lis... #MEcfs #CFS #PwME

youtube.com

2026 Community Symposium on the Molecular Basis of ME/CFS - YouTube

Community Symposium on the Molecular Basis of ME/CFS September 11, 2026, hosted by Stanford University and Ron Davis Opening Remarks: Ronald W. Davis, PhD, S...

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valebodi.bsky.social @valebodi.bsky.social · 28/09/2026

Université de Montreal Faculté de médecine – Thesis Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID #ME/CFS

umontreal.scholaris.ca

Role of haptoglobin and its phenotypic variations in the pathophysiology of myalgic encephalomyelitis and long COVID

L’encéphalomyélite myalgique (EM) et le COVID Long (LC) sont des maladies chroniques multi-systémiques caractérisées par un le malaise post-effort (post-exertional malaise en anglais ou PEM), des trou...

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valebodi.bsky.social @valebodi.bsky.social · 27/09/2026

Immediate Plasma Lipid Perturbations Following Cardiopulmonary Exercise Testing In Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome #ME/CFS

ovid.com

Immediate Plasma Lipid Perturbations Following... : Medicine & Science in Sports & Exercise

Abstract was not provided for this article.

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valebodi.bsky.social @valebodi.bsky.social · 27/09/2026

How can language be used to tackle epistemic injustice in healthcare? In the recent weeks, @meresearchuk.bsky.social has highlighted articles relating to epistemic injustice, and the harm this can lead to for people with #ME/CFS. Therefore of interest is a paper, published in ‘The American Journal

meresearch.org.uk

How can language be used to tackle epistemic injustice in healthcare?

In the recent weeks, ME Research UK has highlighted articles relating to epistemic injustice, and the harm this can lead to for people with ME/CFS. Therefore of interest is a paper, published in 'The ...

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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Frances Ryan @francesryan.bsky.social · 24/09/2026

As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Adam @abrokenbattery.bsky.social · 26/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 26/09/2026

Symptoms are “horrible” and severe cases are a “living nightmare.” @georgemonbiot.bsky.social speaks to @natashadevon.bsky.social on LBC about ME/CFS, its long history of being dismissed and psychologised, and the role of governments and insurers.

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026

I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

The George Monbiot LBC interview with Natasha Devon is EXCELLENT! It's on at 7.33 pm. Can't record it due to DRM capture. BUT will keep an eye out for the recording. share-gp.globalplayer.com/live/lbc/uk/

globalplayer.com

LBC UK - Listen Live | Global Player

Leading Britain's Conversation. Access your favourite LBC shows now!

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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 26/09/2026

@georgemonbiot.bsky.social was on top form tallking about ME on @natashadevon.bsky.social Packed a lot of important info in: Pace Trial, GET harms, benefit cuts, insurance etc. It was like a potted history and didn't mince words about how awful it is. Listen back! #MEcfs #MyalgicEncephalomyelitis

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Katharine Cheston @kacheston.bsky.social · 30/07/2026

As ever, this is a beautiful, thought-provoking piece - thank you, Naomi.

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sanctorium.bsky.social @sanctorium.bsky.social · 26/09/2026

It's a rare gift, to know where you need to be, before you've been to all the places you don't need to be. Ursula K. Le Guin

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Alem Matthees @alemmatthees.bsky.social · 23/09/2026

For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.

actionforme.org.uk

Sequence ME & Long Covid

SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.

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Mar Hicks @histoftech.bsky.social · 26/09/2026

As of today, the CDC has changed (reverted) their Covid guidance to make the vaccine recommended for all people over 18. In addition to being a smart public health move, this recommendation also means insurance must cover it. Read more here: www.cdc.gov/covid/hcp/va... Listen to a breakdown here:

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Alem Matthees @alemmatthees.bsky.social · 25/09/2026

The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Tom Kindlon @tomkindlon.bsky.social · 25/09/2026

8-page document "ME, CFS and Long Covid Health and Care Passport" suffolkfed.org.uk/wp-content/u... Could be used by people in lots of countries #MEcfs #LongCovid #PwME #CFS

ME, CFS AND LONG COVID
HEALTH AND CARE PASSPORT

SECTION 1: CRITICAL INFORMATION AT A GLANCE

Personal Information
Name: I Prefer to be Called:
Date of Birth: NHS Number:
Address: Hospital Number:

Emergency Contact
Name: Contact Number:
Relationship:

MY CURRENT STATUS
Selection Status Meaning

☐

GREEN: I am at my
BASELINE

I am managing within my energy
limits but remain at risk of PEM.

☐

AMBER: I am STRUGGLING /
AT RISK OF A CRASH

My symptoms are worsening.
Please minimise ALL exertion
immediately to prevent a crash.

☐

RED: I am in a CRASH /
SEVERE RELAPSE

Assume I have zero available energy. All
interaction is potentially harmful.
Please follow my emergency care
plan as set out in this section,

MY CURRENT SEVERITY
Selection Severity Meaning

☐

Mild
I may need support for some tasks and
may have difficulties with mobility.

☐

Moderate
I have reduced mobility, and I am
restricted in all activities of daily living.

☐

Severe
I am confined to the house, need help
with all activities, sensitive to light and
sound.

☐

Very Severe
I am confined to bed, hypersensitive,
dependent on care, need help with
personal hygiene, eating.

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