iiinova — where your digital self keeps evolving

Tom Kindlon @tomkindlon.bsky.social · 6h

From the UK An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial dx.doi.org/10.1093/oxfi... Screenshot from latest Science for ME weekly update #LongCovid #PASC #PwLC #postcovid #postcovid19

An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial — Faghy et al
"The mean (SD) distance achieved in the 6MWT was 408 (113) metres at baseline compared to 468 (109) metres post-intervention" "whilst improvements were observed in health-related quality of life, the mean change in EQ-5D-5L index score (0.06) did not exceed the published MCID of 0.11" "Improvements could reflect natural fluctuation in symptom burden, behavioural modification associated with trial participation, or expectation effects."
Article | Thread

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Tom Kindlon @tomkindlon.bsky.social · 6h

DNA methylation: unifying framework for complex chronic conditions www.cell.com/trends/genet... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid #PwME #CFS #Fibromyalgia

DNA methylation: unifying framework for complex chronic conditions — Sharma et al
Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratiﬁcation, and monitoring of disease trajectories."
Article | Thread

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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 8h

Tom Kindlon @tomkindlon.bsky.social : The joint best attendance ever for these social gatherings at the Bell. Some people travelled a distance to attend, with people there from 4 counties. #MEcfs #PwME #CFS

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Tom Kindlon @tomkindlon.bsky.social · 30/09/2026

The Post-Acute Effects of COVID-19 Are Not Associated with Robust Long-Term Regional or Global Brain Volumetric Changes: A Bayesian Meta-Analytic Evidence www.sciencedirect.com/science/arti... Screenshot from Science for ME update #LongCovid #NeuroPASC #COVIDBrain #PASC #postcovid #postcovid19

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Tom Kindlon @tomkindlon.bsky.social · 30/09/2026

From Germany Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study www.amjmed.com/article/S000... Screenshot from Science for ME weekly update #MEcfs #PwME #CFS

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study — Peters et al
"At the post-rehabilitation visit the Bell scale was lower in 45% of patients and higher in only 14% compared with baseline" "Our findings question the clinical value of current rehabilitation in ME/CFS, even when specifically adapted to the disease, particularly for severely affected patients."
Article | Thread

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Emerge Australia @emergeaustralia.bsky.social · 24/09/2026

The Australian: 600,000 Patients Risk Losing Care Over $220k Grant emerge.org.au/news/the-aus... @markbutlermp.bsky.social @sophiescott2.bsky.social @traceyspicer.bsky.social @mmissingaus.bsky.social

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Emerge Australia @emergeaustralia.bsky.social · 25/09/2026

With less than two weeks left in the Living with ME/CFS or long COVID in Australia study, 1,500 people have already shared their experiences. Thank you! Every response strengthens the evidence needed for better recognition, care and research. 👉 zurl.co/kbBAb

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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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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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ME Association @meassociation.org.uk · 24/09/2026

Research: DISCOVER-ME BBC Radio Norfolk speaks to Prof Simon Carding about DISCOVER-ME – a new multi site European ME/CFS research project. The UK ME/CFS Biobank, which is funded by the MEA Ramsay Research Fund, will be supplying blood samples for this research … meassociation.org.uk/chxj

IMAGE DESCRIPTION: A circular image of samples. With the UK ME/CFS Biobank and ME Association Logos

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ME Association @meassociation.org.uk · 24/09/2026

Research: Spotlight on Aleyna: The PhD Researcher Using Cutting‑Edge Technology to Uncover New Clues in ME/CFS Dr Katrina Pears, MEA Research Coordinator has interviewed Aleyna Lumsden, PhD researcher jointly based at Rosalind Franklin Institute & University of Oxford. meassociation.org.uk/ryww

meassociation.org.uk

Research: Spotlight on Aleyna: The PhD Researcher Using Cutting‑Edge Technology to Uncover New Clues in ME/CFS - The ME Association

Metabolomics research is looking to uncover new clues into ME/CFS. Watch Dr Katrina Pears interview PhD researcher Aleyna Lumsden on YouTube.

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ME Association @meassociation.org.uk · 24/09/2026

The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed "Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors" tinyurl.com/mr3p63ve

IMAGE DESCRIPTION: Photo of a woman lying in bed in a dark room, wearing an eye mask. Wording reads: The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.

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ME Association @meassociation.org.uk · 25/09/2026

Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II The MEA‑CAT was originally developed for clinicians working in specialist ME/CFS services, helping them assess and monitor patients more effectively. meassociation.org.uk/yyze

meassociation.org.uk

Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II - The ME Association

Explore the MEA-CAT, a co-produced ME/CFS assessment toolkit with the ME Association. Learn more about stage II of the project.

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ME Association @meassociation.org.uk · 28/09/2026

📢 Help shape the future of care for ME/CFS and Long Covid! The HERITAGE study is looking for people with lived experience of ME/CFS and Long Covid to take part in our study! Get involved: 🔗 heritage.leeds.ac.uk/join #MECFS #LongCOVID #Research #PatientVoice #HealthcareResearch

Poster for the HERITAGE Study with the following text:
HERITAGE:
Health Effects from Infection Sequelae: Tailoring serves and Advancing Guidance
Why is HERITAGE needed?
Care for Long COVID and ME/CFS varies across the NHS.
HERITAGE will explore:
What services are provided.
What people experience.
What works.
What needs to change.
Your experiences can help inform the future of Long COVID and ME/CFS care.
Join the HERITAGE study
https://heritage.leeds.ac.uk/join/

QR Code: Right

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ME Association @meassociation.org.uk · 28/09/2026

British Psychological Society ME/CFS Guidelines: September 2026 Update "We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know..." Read the full update: meassociation.org.uk/t2tu #MECFS

meassociation.org.uk

British Psychological Society ME/CFS Guidelines: September 2026 Update - The ME Association

Read the September 2026 update on the British Psychological Society (BPS) ME/CFS Guidelines

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ME Association @meassociation.org.uk · 29/09/2026

Live in Wales? Want to know what new Welsh Gov-funded ME & Long Covid services offer locally? Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm. Swansea Bay UHB’s team will present and answer questions. All Wales welcome! Register: tinyurl.com/2rz2cupc @wamesmecfs.bsky.social #pwME

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

Emerge Australia @emergeaustralia.bsky.social has posted a copy of an article published by The Australian emerge.org.au/news/the-aus... www.theaustralian.com.au/commentary/6... Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS

Emerge Australia 600,000 patients risk losing care over $220k grant
Emerge Australia has posted a copy of an article published by The Australian.
"Federal funding of the patient health service effectively paid for telehealth, information and support service delivery and development. On November 30 that funding ceases and Wilson says there is no certainty of new funding of a service to some of the most vulnerable people in the country."
Emerge | The Australian | Thread

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ME/CFS Research Foundation @mecfsresearch.bsky.social · 28/09/2026

Have you come across the ME/CFS Research Register yet? A database that gives the overview of #MECFS research: projects, publications, people and events from 6 countries (🇩🇪 🇦🇹 🇨🇭 🇳🇱 🇳🇴 🇮🇸), all interlinked. Free, in English. t.ly/N_4EY

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Adam @abrokenbattery.bsky.social · 23/09/2026

Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.

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Elke Hausmann @drelke.bsky.social · 24/09/2026

Thank you @georgemonbiot.bsky.social for an article that really gets to the heart of what is going for people with #ME and #LongCovid and how we are being treated, by the #NHS, by politics, by the media (with notable exceptions in all areas) 1/3 www.theguardian.com/commentisfre...

To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. "I've just been completely abandoned"; "a 10-year waiting list for treatment"; "we've given up seeking medical support"; "stuck in limbo";
"I just felt utterly unheard, invalidated".
• I've
been sent hundreds of shocking and heart-rending accounts.

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Adam @abrokenbattery.bsky.social · 27/09/2026

“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.

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Adam @abrokenbattery.bsky.social · 28/09/2026

“We’ve had wasted decades in which huge numbers of patients have been abused, mistreated and their very horrible condition made even worse by medicine.” George Monbiot talking about the PACE trial, graded exercise therapy (GET) and CBT as treatments for #MECFS.

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

The role of 6-minute walk test and pulmonary function testing in patients with post COVID-19 condition: a systematic review and meta-analysis dx.doi.org/10.1093/famp... "The overall certainty of the evidence was very low due to the high risk of bias, indirectness, and imprecision” #LongCovid

dx.doi.org

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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

From MCS-Aware newsletter "Four new peer-reviewed studies on Multiple Chemical Sensitivity (MCS) have been published in the International Journal of Environmental Research and Public Health" aseqmail.moosend.com/show_campaig... #MultipleChemicalSensitivity #MCS

New MCS Studies

We are thrilled to share an important milestone in ASEQ-EHAQ’s research program: four new peer-reviewed studies on Multiple Chemical Sensitivity (MCS) have been published in the International Journal of Environmental Research and Public Health.
Together, these studies provide vital new evidence across several key areas:
The specific chemical exposures that trigger the onset and symptoms of MCS.
The socioeconomic challenges, disability recognition, and accommodation issues faced by the community.
The real-life experiences of navigating fragrance-free policies.
A comprehensive review of how fragrance-free policies are currently defined and implemented.

To read more and see the studies in more detail click here.

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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026

The S4ME forum has started a thread for members to share stories of their ME/CFS journeys in up to 10 sentences: s4me.info/threads/your... The WE&ME foundation will ask some contributors if they can use their stories for advocacy. This is my story. Please consider sharing yours on @s4me.info

Once an academic scholar and keen sportsman, my ME/CFS symptoms came on suddenly in 1992 when I was a 19 year old student, following tonsillitis, suspected glandular fever and two courses of antibiotics. The transition from someone who was essentially well and able to participate in normal activities to someone who was very obviously unwell and incapacitated was marked and sudden. However, I suspect that there may have been something wrong with me prior to that as I had been unusually tired and prone to infections for a few years, along with unidentified problems in my knee and shoulder, which had limited my ability to run and play racket sports.

After struggling to live independently on and off for about 18 months, I returned to live with my parents fulltime in 1994. If I had known then what lay ahead, I would not have been able to cope, and I don’t know if I would still be alive. For about seven years I was almost completely bedridden, in excruciating discomfort, urinating into a bottle and eating meals in bed. Now aged 53 I am mostly housebound and cared for by my 80 year old mother in a wheelchair adapted annexe on the side of her house.

One can be philosophical about loss and incapacity – about absence – but there is no philosophy that can overcome the presence of extreme physical discomfort and pain; of constantly feeling unwell. I am luckier than many people with my diagnosis in that some of my family and friends have been extremely supportive, and I have had some kind and helpful doctors, but like most people with ME/CFS I have also been let down, mistreated, ridiculed and abused, both personally and institutionally.

Love, solidarity and productivity, however limited, help to get me through the days, but I’m not sure that I could keep going without hope – hope of scientific understanding and a better quality of life.

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Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 27/09/2026

I'm feeling this so hard today that I may have to cancel my visit with my little granddaughter. I was so looking forward to hearing how she likes Kindergarten. 😢

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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026

@investinmeresearch.bsky.social MyGivingCircle Vote (Free): 428 votes needed to reach the Top 20 and share in $70,000. Voting closes Wednesday Sept 30 at 8pm BST. mygivingcircle.org/invest-in-me...

mygivingcircle.org

Vote for Invest in ME Research to share in £1,500,000

Each year MyGivingCircle gives £1,500,000 in grants and donations

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Action for ME @actionforme.bsky.social · 23/09/2026

We’ve provided a submission to the government for their Autumn Budget. We’re urging the HM Treasury to: 1) Fund implementation of a national framework for severe & very severe ME 2) Accelerate ME research & innovation Read more 👇 www.actionforme.org.uk/action-for-m...

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Action for ME @actionforme.bsky.social · 24/09/2026

A powerful piece from @georgemonbiot.bsky.social in The Guardian on the decades of neglect, dismissal and disbelief experienced by people with ME. Read the full article 👇 www.theguardian.com/commentisfre... www.theguardian.com/commentisfre...

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Alem Matthees @alemmatthees.bsky.social · 27/09/2026

"Have you tried yoga?" Yes I have, and it looked something like this amusing image I found on Reddit. www.reddit.com/r/cfs/commen... Jokes aside, there are many forms of yoga, and one thing I noticed about #MECFS is how it renders useless the benefits of yoga and even makes them harmful.

Images depicting a person attempting yoga then moving into the sleeping position under a blanket and taking a nap.

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2026

Two researchers have explored how language can be used to tackle epistemic injustice in healthcare for people with ME/CFS. Read more: tinyurl.com/bdnwr8n6 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps

Researchers have proposed two ways language can be used to tackle epistemic injustice in healthcare:

Look closely at the words used in healthcare. Identify language that leaves out people's experiences or reinforces unfair assumptions, then work with people with the disease, their families, healthcare professionals, researchers and policymakers to replace it with fairer and more inclusive language
Make language part of how unfairness is investigated and taught. When examining why some people are not heard or included in medical knowledge, also consider how everyday terms and labels shape attitudes and decisions. Help students and healthcare staff recognise and question these hidden assumptions.
o
O
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Reminder: Epistemic injustice is the harm done to a person which is related to their own knowledge or personal experience.
■% INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942
Wallat and Hille. The American Journal of Bioethics (2026)

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2026

25 adolescents with ME/CFS found to have slower information-processing speeds, poorer sleep, reduced quality of life, and poorer mental wellbeing compared with 25 healthy controls of the same age. Read more: bit.ly/4dUz7sZ Link to research paper: bit.ly/4rzVKc8 #mecfs #cfs #pwme #cfsme

ME/CFS in Adolescence: Effects on cognition and wellbeing
25 young people with mild or moderate ME/CFS aged 12 to 19 years were compared with 25 healthy controls of the same age.
Results showed that those with ME/CFS had:

Greater symptom burden including poorer sleep and reduced quality of life
Slower processing speeds
'?

Issues with attention and working memory
Reduced `psychosocial wellbeing'
Note: This study used a small sample size and did not include those with more severe froms of the disease.
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INFORM. INFLUENCE. INVEST.
SCO36942
Chau, T., Josev, E. K., Scheinberg, A., at al. J. Paediatr. Child Health. 2026; 1-13.

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2026

From @meresearchuk.bsky.social Exciting research funded by ME Research UK was showcased at the ISLC-PAIS 2026 conference! Discover more about the presentations here: tinyurl.com/246rj47b #mecfs #cfs #pwme #longcovid

RESEARCH UK
ISLC-PAIS 2026: ME Research UK-funded research highlights
ME Research UK-funded research presented at ISLC-PAIS 2026 covered topics including:

Muscle abnormalities

Gene regulation
Fat metabolism Cellular waste Q=1, • •• • e _

Blood vessel Post Subtle exertional changes in abnormalities malaise brain tissue
Together, the studies illustrated the range of biological differences being identified in ME/CFS, and in long COVID, while also highlighting important questions for future research.
INFORM. INFLUENCE. INVEST.
SCO36942

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2026

From @meresearchuk.bsky.social In the fourth deep-dive of our weekly Symptom Saturday series, we explore debilitating fatigue in ME/CFS – including lived experience, research insights, related diagnostic delays, and management. Read more: www.meresearch.org.uk/fatigue-in-m... #MEcfs #CFS #PwME

FATIGUE IN ME/CFS
Fatigue in ME/CFS is not "just tiredness", it is a debilitating, unrelenting exhaustion that is inadequately relieved by rest and drastically reduces one's capacity to carry out daily activities.
• ME/CFS-related research highlights: • Low heart rate variability linked to higher fatigue levels. • Potential functional/structural brain differences, such as in prefrontal cortex, related to fatigue. • A study showed that whilst the nature of fatigue across different chronic disease cohorts was similar, people with ME/CFS had much higher levels of total fatigue than any of the other groups. Although the studies have limitations, they are a starting point for further research.

• e •
INFORM. INFLUENCE. INVEST. Full overview and references at [tinyurl.com/fatiguesymptomsat]
ChiPlitA RESEARCH UK SCO36942

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ME Research UK @meresearchuk.bsky.social · 24/09/2026

In case you missed it - Sleep dysfunction can feel like a heavy weight on top of an already debilitating condition. We have drawn together some of the common themes about the experience of sleep dysfunction from our recent survey. tinyurl.com/sleepdysmeim...

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2026

(Geelong & Hawthorn, Victoria, Australia) People with ME/CFS sought for treatment trial impact-trials.deakin.edu.au/trial/tri-me... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Clay Tribune @claytribune.bsky.social · 26/09/2026

The seminar covered social risk factors faced by people living with Long COVID and how the condition shapes children's schooling. The video recording alone makes this a landmark moment for research into Long COVID.

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

George Monbiot is on LBC NOW!

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Eleanor Fielding @meownersclub.bsky.social · 26/09/2026

Great coverage and great thanks to @georgemonbiot.bsky.social If you’re brain-fogged here is a visual sunmary of the article

#ME and Long Covid

The science has moved on
Clinical practice has not

WHERE'S THE PUBLIC INQUIRY?

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Elke Hausmann @drelke.bsky.social · 26/09/2026

‚Monbiot’s column is a harrowing but necessary read.‘ #LongCovid #ME

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Tom Kindlon @tomkindlon.bsky.social · 26/09/2026

From MCS-Aware One of our members recently shared MCSDisability.com, an American website that offers helpful resources on Multiple Chemical Sensitivity.We think it may be of great interest to our community, especially those looking for wider perspectives on #MCS support #MultipleChemicalSensitivity

mcsdisability.com

Multiple Chemical Sensitivity (MCS) | Is It Real? YES — Medical Facts & Resources

Comprehensive, evidence-based information about Multiple Chemical Sensitivity (MCS). Symptoms, triggers, research, disability rights, and management strategies.

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Tom Kindlon @tomkindlon.bsky.social · 26/09/2026

RECOVER researchers and caregivers shared insights into Long COVID social risk factors and how Long COVID affects children’s learning and school experiences—including what researchers hope to learn next. Text plus video recording recovercovid.org/r3-seminar-s... #LongCovid #LongCovidKids #LCKids

recovercovid.org

Growing up with Long COVID—Risk factors and school impacts

Findings from RECOVER’s pediatric observational study show that Long COVID can affect children’s health and daily lives in different ways. During the September 15, 2026, RECOVER Research Review (R3) S...

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