iiinova — where your digital self keeps evolving

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ME Research UK @meresearchuk.bsky.social · 28/09/2026

In the fourth deep-dive of our weekly Symptom Saturday series, we explored debilitating fatigue in ME/CFS – including lived experience, research insights, related diagnostic delays, and management. Read more: tinyurl.com/fatiguesympt... Survey: tinyurl.com/fatiguesurve...

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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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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 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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Darren Brown OBE @darrenabrown.bsky.social · 19/09/2026

Published today 🔔 in Journal of Patient Reported Outcomes “Sensibility of the Episodic Disability Questionnaire among adults living with #LongCOVID in Canada, Ireland, the United Kingdom, and the United States” @kellyobrien25.bsky.social @maryek.bsky.social link.springer.com/10.1186/s416...

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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026

Our short animation to descirbe the results and findings.

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Long COVID Physio @longcovidphysio.bsky.social · 22/09/2026

Results from the ERASE_LC trial Great to see biomedical research for LongCovid And fantastic to see that patients were at the centre of the entire research project #collaboration 🙏

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Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 15/09/2026

🚨If you have a moment, respond to this consultation on reducing NHS Covid data. www.england.nhs.uk/long-read/st... We have added some thoughts which might be helpful... 1/🧵

england.nhs.uk

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UK Covid-19 Inquiry @ukcovid-19inquiry.bsky.social · 03/09/2026

3/ Their voices are directly informing the Inquiry's Module 8 investigation and will help shape the report and recommendations. Go to the Inquiry's website via the link below to read the Children and Young People’s Voices report 👇 covid19.public-inquiry.uk/children-you...

covid19.public-inquiry.uk

Children and Young People's Voices Research Project - UK Covid-19 Inquiry

The independent public inquiry to examine the Covid-19 pandemic in the UK

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UK Covid-19 Inquiry @ukcovid-19inquiry.bsky.social · 03/09/2026

2/ 600 children and young people, now aged 9 to 22, shared their experiences revealing a multitude of profound, distressing and life-altering ways the pandemic affected them.

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UK Covid-19 Inquiry @ukcovid-19inquiry.bsky.social · 03/09/2026

1/ The Children and Young People's Voices research report is the largest child interview-led research exercise ever undertaken by a UK public inquiry.

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Long Covid The Answers @longcovidanswers.bsky.social · 31/08/2026

Could Some Long COVID Patients Need Someone Else’s #Mitochondria? Prof @putrinolab.bsky.social discusses different patterns of mitochondrial dysfunction in #LongCOVID &research into whether healthy donor mitochondria could one day be explored for patients with severe dysfunction.

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Putrino Lab @putrinolab.bsky.social · 31/08/2026

Delighted to announce some new progress on our #LongCOVID trial with Fareon and their first-in-human microtesla magnetic therapy (MMT) device. As you may recall, we pre-printed the safety/feasibility work not too long ago: www.medrxiv.org/content/10.6... In this triple-blind placebo- 1/

medrxiv.org

Microtesla Magnetic Therapy for cognitive impairment in post-acute sequelae of SARS CoV-2: A randomized controlled feasibility study

Background Cognitive impairment has significant implications for function and quality of life and is common in individuals with post-acute sequelae of SARS CoV-2, also known as long COVID (LC). Emergi...

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Danielle Beckman @daniellebeckman.bsky.social · 30/08/2026

Had an amazing time in Amsterdam! Thank you to everyone who made the first @islc-pais.bsky.social meeting happen! So special to bring together scientists, physicians & patient advocates working hard for better science & treatments. And I even got a surprise award 🥹🏆 Grateful to be part of this. ❤️

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Long Covid UK @longcoviduk.bsky.social · 28/08/2026

It described how well the EDQ can reliably and consistently assess disability in adults with Long Covid, and how well it measures what we intended it to measure. Thank you to Margaret and all the other partners on this brilliant project for their work! #LongCovid #ISLCPAIS #EDQ

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Long Covid UK @longcoviduk.bsky.social · 28/08/2026

Margaret's oral presentation yesterday was titled “Assessing the Measurement Properties of the Episodic Disability Questionnaire (EDQ) with adults living with Long COVID in Canada, United Kingdom, Ireland, and United States”.

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Long Covid UK @longcoviduk.bsky.social · 28/08/2026

The Episodic Disability Questionnaire (EDQ) is a patient reported outcome measure to measure the disability that results from Long Covid. It was co-developed by collaborative team of over 25 people, including academic clinicians and people with lived experience of Long Covid.

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Long Covid UK @longcoviduk.bsky.social · 28/08/2026

We're very proud of our trustee and research co-lead, Dr Margaret O'Hara, who is attending the ISLC PAIS Conference on behalf of us, the Episodic Disability Study Team (Toronto University) & the Rehabilitation Science Research Network for COVID, in Amsterdam this week 🥳

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Danielle Beckman @daniellebeckman.bsky.social · 24/08/2026

From learning from your mentors to sharing the stage with them! 🥹 I’ll be speaking right after one of mine in our #NeuroCOVID session at @islc-pais.bsky.social conference this week in Amsterdam 🧠 Not in Amsterdam? Watch on demand: islc-pais.org/vod/ With @davidjoffe64.bsky.social #LongCovid

ISLC-PAIS program that is happening this week in Amsterdam. NeuroCovid talks by David Joffe & Danielle Beckman

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Tom Kindlon @tomkindlon.bsky.social · 23/08/2026

🧵 ME Research UK: We are deeply appreciative that the community has shared their experiences with us. The accounts detailing the devastation of post-exertional malaise (PEM) in ME/CFS are both moving and profoundly informative. tinyurl.com/PEMimpactME #PEM #MEcfs #CFS #PwME 1/

What post-exertional malaise (PEM) in ME/CFS feels like
Responses from ME Research UK Symptom Saturday PEM Survey

INFORM. INFLUENCE. INVEST.
RESEARCH UK SCO36942

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Dick Zoutman @dickzoutman.bsky.social · 27/08/2026

Please read! Very important study on long covid in healthcare workers!

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Long Covid UK @longcoviduk.bsky.social · 28/08/2026

If you didn't manage to make it to You're Not Imagining It — Long COVID, ME & Other Invisible Illnesses on 22 July, hosted as part of South Asian Heritage Month, the recording of the webinar is now available on YouTube. Watch: www.youtube.com/watch?v=BOuP... #LongCovid #SouthAsianHeritageMonth

youtube.com

You're Not Imagining It: Long COVID, ME & Invisible Illnesses in South Asian Communities

Invisible illnesses can be some of the hardest conditions to live with—not only because of the symptoms, but because so many people struggle to be believed. In this South Asian Heritage Month…

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Johan Van Weyenbergh @johanvawe.bsky.social · 28/08/2026

Michael Peluso on mechanistic trials in #LongCovid

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Johan Van Weyenbergh @johanvawe.bsky.social · 27/08/2026

Actually we should have known after SARS-COV-1 #SARS 20 years ago #LongCovid #pandemicpreparedness

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Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 19/08/2026

UK: Long COVID severely impacts healthcare staff. 🔸1 in 4 (27%) surveyed UK healthcare workers reported long COVID, with serious consequences for their health, work and home lives, and NHS workforce overall. 🔸Globally, around 40% of healthcare workers in multiple studies experienced long COVID.

leicesterbrc.nihr.ac.uk

Leicester-led research reveals long COVID’s lasting impact on healthcare workers - NIHR Biomedical Research Centre Leicester

Major research has found that long COVID continues to affect a substantial proportion of healthcare workers, with serious consequences for their health, work and home lives, and NHS workforce overall.

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Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 19/08/2026

UK: COVID-19 Risk Assessment: Week Ending 9 August 2026 Published: August 18, 2026 🔸COVID-19 infections in England are rising as summer comes to an end, hitting 1 in 1338 people as of 9 August 2026 🔸If 2026 mirrors 2025, rates could reach around 1 in 500 (Moderately High) by October or November

buds.org.uk

Covid-19 Risk Assessment: Week Ending 9 August 2026

The BuDS Covid-19 Risk Assessment for the week ending 9 August 2026

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Darren Parkinson @greendarrenshipley.bsky.social · 19/08/2026

“My message to the new Prime Minister and his Government is really clear – do more to support people living with Long Covid, and invest more money for research to hopefully find a cure for this horrendous condition.” We are sick and exhausted - Andy Burnham must act.

Screenshot of a Telegraph & Argus article headed “Long Covid: Man’s plea to Prime Minister Andy Burnham”. It shows Darren Parkinson, a bearded man in a black hoodie, sitting outdoors in a garden and holding a mug.

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UK Covid-19 Inquiry @ukcovid-19inquiry.bsky.social · 17/08/2026

1/ The UK Covid-19 Inquiry will publish its sixth report 'Care Sector' (Module 6) on Tuesday 20 October 2026.

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UK Covid-19 Inquiry @ukcovid-19inquiry.bsky.social · 17/08/2026

1/ The UK Covid-19 Inquiry will publish its seventh report 'Test, Trace and Isolate' (Module 7) on Thursday 19 November 2026.

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Long Covid Kids @longcovidkids.bsky.social · 11/08/2026

🎨 Could your design be our next Long Covid Kids T-shirt? Our design competition is open to anyone aged 21 & under. Create something inspired by hope, belonging, courage, community — or something completely different. 👇 www.longcovidkids.org/post/design-... #LongCovidKids #LongCovid #Summer

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Tom Kindlon @tomkindlon.bsky.social · 09/08/2026

2/ Key Points from: Wearable Heart Rate Variability Monitoring, Autonomic Dysfunction and Post-exertional Malaise in Long COVID: An Observational Study link.springer.com/article/10.1... #LongCovid #HRV #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome

Key Points
What is already known on this topic

Patients with long COVID often experience fatigue, autonomic dysfunction and post-exertional malaise (PEM). HRV can be used as a non-invasive tool to measure autonomic function and recovery. Some evidence suggests lower HRV in patients with long COVID, but multi-day measurements are scarce.

What this study adds

This study demonstrates that continuous HRV monitoring through wearables can effectively identify overexertion and autonomic dysfunction during daily activities in patients with long COVID. Patients with long COVID have lower heart rate variability during sleep, and HRV remained significantly lower for a longer period after moderate-to-heavy exercise, that is generally associated with the induction of post-exertional malaise.

How this study might affect research, practice or policy

This study supports the use of wearables for assessing autonomic function and overexertion in daily life, helping patients with long COVID in pacing daily activities to mitigate symptoms of post-exertional malaise. HRV tracking after exercise suggests that exercise near or above VT1 provides an elevated risk for PEM. Sports physicians and physiotherapists can incorporate HRV biofeedback measures into pacing advice to patients. Additional research is needed to further investigate the effect of such an intervention.

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Long Covid The Answers @longcovidanswers.bsky.social · 07/08/2026

Post-exertional malaise (PEM) Prof. Rob Wüst explains what PEM is, why it happens, and why pushing through can leave you feeling worse. #LongCOVID #LongHauler #MECFS #PostExertionalMalaise #Fatigue #Mitochondria #ChronicIllness #ScienceExplained

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PolyBio Research Foundation @polybiorf.bsky.social · 10/08/2026

Listen to Dr. Tim Henrich’s latest update on bone marrow biopsies in Long COVID: youtu.be/tD5gWVEjudQ?...

youtu.be

PolyBio Spring 2026 Symposium

YouTube video by PolyBio Research Foundation

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PolyBio Research Foundation @polybiorf.bsky.social · 10/08/2026

PolyBio is supporting research that investigates the bone marrow as a potential long-term SARS-CoV-2 reservoir site. Bone marrow-derived cells, including megakaryocytes and the platelets they produce, have previously been shown to contain SCV2 double-stranded RNA in Long COVID patients’ samples— 1/

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Dr Ben King 🌍 @benking01.bsky.social · 08/08/2026

Good News! The full Webinar has now been uploaded to YouTube. Please share! 'How To Manage And Treat Post Exertional Malaise (PEM) youtu.be/Na5znc92ylY?... #LongCovid #PostExertionalMalaise #PEM #MECFS #PostViralIllness #Webinar @putrinolab.bsky.social

youtu.be

How to Manage and Treat Post-Exertional Malaise (PEM)

YouTube video by RTHM Health

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The Skylark @theskylark.bsky.social · 10/08/2026

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Long COVID Physio @longcovidphysio.bsky.social · 07/08/2026

Novità oggi 🔔 L’intera serie di video sul #LongCOVID in italiano 🇮🇹 Ora disponibile: 🚨 Impatto del Long COVID sulla vita quotidiana 👷 Riabilitazione sicura per il Long COVID ⚖️ Dosare le energie 🏃🏽‍♀️ Esercizio fisico @fisiocamera.bsky.social 🧵 longcovid.physio/italian-long...

longcovid.physio

Long COVID: Video Serie — Long COVID Physio

Una video serie sul Long COVID in collaborazione con FisioCamera

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Mark Faghy @profmarkfaghy.bsky.social · 30/07/2026

📢 Participants needed for Long COVID research I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery. 🔗 app.onlinesurveys.jisc.ac.uk/s/lboro/long...

app.onlinesurveys.jisc.ac.uk

Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study - Online Surveys | Online surveys

Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, Online surveys is used by over 300 different organisations in the UK...

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Long Covid Journey @longcovidjourney.bsky.social · 26/07/2026

Why aren’t people with Long COVID simply going back to work? Because for many, the problem is not motivation. It is a condition where even small physical or cognitive effort can trigger a delayed crash. Ignoring this reality has a cost human and economic. longcovidjourney.com/the-economic...

longcovidjourney.com

Long Covid and Work in the UK: Why Thousands Are Leaving the Workforce - Long Covid Journey

Britain faces an economic crisis due to Long Covid, with over two million affected individuals suffering debilitating symptoms. The rise in economic inactivity, currently at 2.8 million, highlights th...

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rthm_health @rthm.bsky.social · 27/07/2026

Join Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, & moderator Charlie McCone for a discussion on how to best manage and treat post-exertional malaise. Learn about the different types of PEM, how to navigate a crash, and interventions for reducing PEM. Sign up here: ow.ly/nAvg50ZtEb8

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Adam @abrokenbattery.bsky.social · 27/07/2026

“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.” @karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS

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Tom Kindlon @tomkindlon.bsky.social · 28/07/2026

Great to have this research with such a useful control group: Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest www.nature.com/articles/s41... #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE

Abstract
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from post-exertional malaise. The accompanying physical inactivity may contribute to a lower aerobic capacity and may explain skeletal muscle adaptations in these patients. Here, we compare whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in long COVID and ME/CFS patients, and healthy age- and sex-matched controls. Bed rest alters respiratory and cardiovascular responses to maximal exercise, which are dissimilar in patients. Bed rest causes muscle atrophy without altering fiber type. Both patient groups have more glycolytic fibers, and ME/CFS patients display type I-specific atrophy. Only after bed rest is oxidative phosphorylation capacity associated with maximal oxygen uptake. As skeletal muscle characteristics differ between patients and healthy individuals after bed rest, physical inactivity cannot solely explain the lower exercise capacity and skeletal muscle adaptations in long COVID and ME/CFS patients.

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Tom Kindlon @tomkindlon.bsky.social · 28/07/2026

Rob Wüst, corresponding author of the new paper: "Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest" www.nature.com/articles/s41... Link to his full post www.linkedin.com/posts/rob-w%... #MEcfs #LongCovid

Rob Wüst

• 2nd

Associate Professor | Vrije Universiteit Amsterdam | Physiology | Human Movement Sciences | Metabolism | Microscopy | Chronic Diseases

4h • Edited •

Connect

I am incredibly proud to share our latest study, published today in Nature Communications, as a follow-up from our 2024 Nature Communications paper.
https://lnkd.in/dij5WTNk

People with long COVID and ME/CFS are often told that their reduced exercise capacity and muscle abnormalities are simply the result of physical inactivity or “deconditioning.” We tested this assumption by comparing patients with healthy individuals who underwent 60 days of strict bed rest.

Although prolonged bed rest had major effects on physical fitness and skeletal muscle (see also: https://lnkd.in/dhx8JNQi), these changes were distinctly different from those observed in long COVID and ME/CFS. Our main conclusion: physical inactivity alone cannot explain the reduced exercise capacity and skeletal muscle abnormalities in these diseases.
This is important because it shows why a simple “just exercise more” approach does not reflect the underlying biology, particularly for people who experience post-exertional malaise. We need to understand the disease-specific mechanisms and develop safe, tailored treatments.

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