iiinova — where your digital self keeps evolving

Paul Keeble ME/LC @paulkeeble.co.uk · 17/09/2025

The ME/CFS research foundation has started tracking the Norway and Iceland research landscape (alongside existing Germany, Austria, Switzerland and the Netherlands tracking). Image is of Norway publications. They have 3 Phase II trials currently running. mecfs-research.org/en/news-mrr-...

2015 through 2025 publication numbers and classifications graph from Norway. In 2025 they published 2 basic research, 1 epidemiology, 1 clinical and 1 secondary research.

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Paul Keeble ME/LC @paulkeeble.co.uk · 17/09/2025

Small study (38) finds(just about) clinical significance that Solriamfetol, a drug for narcolepsy, improved fatigue in #pwme. They used the Fatigue Symptom Inventory which is a bad 1-10 measure all about fatigue. Its not open access, but I suspect there are issues and limited improvement.

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Paul Keeble ME/LC @paulkeeble.co.uk · 17/09/2025

"A study using DNA samples from 418 people with ME/CFS found that certain gene variants encoding inhibitary KIRs [Killer-cell immunoglobulin-like receptors] are more common in ME/CFS..., further supporting the role of Natural Killer cells in ME/CFS" www.meresearch.org.uk/natural-kill...

meresearch.org.uk

Natural killer cells, genes, and ME/CFS

Cytotoxicity is the ability of a cell to damage another cell. Natural killer (NK) cells use this ability to destroy infected and diseased cells – a function that is crucial in the immune system. Resea...

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Paul Keeble ME/LC @paulkeeble.co.uk · 16/09/2025

"The reliability of the Office for National Statistics (ONS) data relies on coroners naming specific substances on death certificates, something which often does not happen." Same with cause of death, which in #pwme ME is removed. www.bbc.co.uk/news/article...

bbc.co.uk

Thousands of opioid deaths missed off official figures

The error - affecting England and Wales - raises concerns about the impact on the government's approach to drug deaths.

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Paul Keeble ME/LC @paulkeeble.co.uk · 16/09/2025

Some of the press is "covering" the current Covid wave but their entire messaging is unchanged, its nothing to worry about. They never mention Long Covid. A coordinated disinformation campaign by the UK press. www.mirror.co.uk/news/uk-news...

mirror.co.uk

Covid 'Stratus' variant warning over 'unpleasant bug' as doctor issues alert

A new Covid variant, Stratus (XFG), is rapidly spreading worldwide. It's highly contagious, and can result in a nasty bug, but vaccines remain effective, experts say

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/09/2025

Covid is dropping fast too. A whopping 140,179 papers in 2021 and its down to 58599 last year. Still much much bigger than the Long Covid and ME/CFS showing the long term disease aspect is still comparatively poorly studied.

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/09/2025

Harder to quantify is novelty and value of the papers. Some high quality ME/CFS papers this year I think its improved a lot in 5 years. Long Covid however is getting tagged like its a date range on unrelated papers. Its a reduction of good amidst plenty of bad.

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/09/2025

ME/CFS is growing but still a very small number of papers especially compared to Long Covid. Long Covid is shrinking fast. The combined number has dropped a lot from ~13000 in 2022 to ~6900 this year. Its nearly halved.

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/09/2025

ME/CFS has grown significant, there was 9 papers in 2001 and 258 last year. At current rates this year there will be 313 papers, the most ever.

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/09/2025

🧵The number of papers going through pubmed on Long Covid is dropping. The height was 2022 with 11166 papers whereas last year there was 7369 and at current rates this year will reach 6,645. but for ME/CFS however....

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Reposted by Paul Keeble ME/LC

Alexis Gilbert @alexisme.bsky.social · 22/07/2025

What the ME delivery plan should have looked like - full post here: www.instagram.com/p/DMa8sjPMzd...

Green background with white text

Research
Ring-fenced, multi-year ME and long covid Research Fund of £100m per year overseen by a scientific board with 50% independent patient representation and with 80% allocated to
biomedical mechanisms and therapeutics, not behavioural studies.

Living with ME
National network of ME Centres of Excellence delivering:
1.Home-based outreach for severe/very severe patients
2. Rapid-access inpatient beds with low-stimulus environments for
emergency care.
3. One stop online clinics (eg. immunology, cardiology, neurology, sleep etc)

Social care
Automatic highest-rate disability benefit entitlement for patients who meet severe or very severe criteria, removing the real harm done by detailed assessments and reassessments.
24-hour home-care
entitlement for all very severe cases.
@alexis_me

Education
Creation of a new medical specialty to look after medically complex illnesses and comorbid patients including ME and other IACCs such as long covid.
This would have its own
postgraduate training scheme and consultant posts in every hospital.
Training would include the patient experience, immunology, cardiology, infectious diseases, renal and respiratory medicine, environmental medicine and more including the history of ME.

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Paul Keeble ME/LC @paulkeeble.co.uk · 02/07/2025

He said there were no good options, adding: “It’s the least-worst decision that could have been taken at the time.” The High Court ruled in 2022 that ... discharging hospital patients into care homes at the start of the pandemic were “unlawful”. www.independent.co.uk/news/uk/home...

independent.co.uk

Matt Hancock defiant about Covid care home plan

The High Court ruled in 2022 that government policies on discharging hospital patients into care homes at the start of the pandemic were ‘unlawful’

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Paul Keeble ME/LC @paulkeeble.co.uk · 27/06/2025

Large study looking at reinfections finds initial infections of Delta don't seem to worsen with subsequent infections, whereas those initially suffer Omicron do. "Repeated infection with Omicron variants may increase the risk of long-term symptoms." academic.oup.com/cid/advance-...

academic.oup.com

The Effect of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Reinfection on Long-Term Symptoms in the Innovative Support for Patients With SARS-CoV-2 Infections Registry (INSPIRE)

The clinical consequences of repeated severe acute respiratory syndrome coronavirus 2 infection are unclear, especially as they relate to long-term symptom

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Paul Keeble ME/LC @paulkeeble.co.uk · 27/06/2025

"In LC patients, an early phase of low-grade inflammation transitioned into significant reduction in proinflammatory biomarkers ... this pattern suggests a possible suppression or exhaustion of the immune response in the months following acute infection" www.mdpi.com/1648-9144/61...

mdpi.com

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Paul Keeble ME/LC @paulkeeble.co.uk · 26/06/2025

These genes are involved in cortical neurogenesis, brain evolution, and neuroblastoma, and have been implicated by several studies in schizophrenia and autism.

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Paul Keeble ME/LC @paulkeeble.co.uk · 26/06/2025

77 Patient genetic study on #mecfs. "Significant associations with ME/CFS were harboured in genes that belong to the Neuroblastoma Breakpoint Family encoding Olduvai (DUF1220) domains, namely NBPF1 (rs3897177), NBPF10 (rs1553120233), and NBPF16" pubmed.ncbi.nlm.nih.gov/40564862/

pubmed.ncbi.nlm.nih.gov

Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders - PubMed

Background/Objectives: The aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic and severe debilitating disease with a complex phenotype, remains elusive. A...

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Paul Keeble ME/LC @paulkeeble.co.uk · 26/06/2025

🧵Cells infected with pseudovirus could increase the accumulation of ferrous ions and ROS in mitochondria and be released into the cytosol after removing pseudovirus, thereby causing mitochondrial dysfunction...

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Paul Keeble ME/LC @paulkeeble.co.uk · 23/06/2025

"After taking liraglutide for 12 weeks, the participants reported that the mean number of days per month on which they experienced a headache dropped from almost 20 to just under 11. Of the 31 participants, 15 had a reduction of at least 50% in monthly headache frequency."

nature.com

Obesity drugs show promise treating a new ailment: migraine

Liraglutide, part of the family of blockbuster weight-loss drugs, reduces headaches by half in a small study.

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Paul Keeble ME/LC @paulkeeble.co.uk · 23/06/2025

The big one for me is the combination that only 40 of the 86 completed the study and most had efficacy issues but they aren't included in the results so its heavily biased, but also the improvement in Bell score is actually quite small, only about 5%.

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Paul Keeble ME/LC @paulkeeble.co.uk · 23/06/2025

Jarred Younger on some of the issues with the recent 86 patient Rapamycin trial. The dropouts due to lack of efficacy, the lack of ME/CFS criteria information. Feels its mainly research focussed to design a better study. www.youtube.com/watch?v=JqUa...

youtube.com

061 - Low dose rapamycin for ME/CFS

YouTube video by Jarred Younger, PhD

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Paul Keeble ME/LC @paulkeeble.co.uk · 22/06/2025

Hyperbaric chamber and Oxygen with 3 control groups for oxygen, pressure and neither results in no differences. It doesn't work, another of the early treatment options fails in a random control trial. #longcovid www.dhmjournal.com/index.php/jo...

dhmjournal.com

Diving and Hyperbaric Medicine - Abstracts 2025 55 (2)

Diving and Hyperbaric Medicine is published quarterly by the South Pacific Medicine Underwater Society and the European Underwater and Baromedical Society.

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Paul Keeble ME/LC @paulkeeble.co.uk · 18/06/2025

We also know that the official count of deaths is atrociously bad and better estimates had it at 27x the official number. Worse perhaps is since then excess deaths have accounted for about the same again meaning a death toll more like 52 million and continuing to climb.

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Paul Keeble ME/LC @paulkeeble.co.uk · 18/06/2025

T cells can cause inflammation in a mouse intestine and they can then migrate to the central nervous system and they produce high levels of GM.CSF, Interferon gamma and IL-17A triggering neurological damage. The t cells activate the microglial cells. www.nature.com/articles/s41...

nature.com

Gut inflammation promotes microbiota-specific CD4 T cell-mediated neuroinflammation - Nature

Dysregulated CD4 T cells that recognize gut commensal antigens are able to infiltrate the central nervous systems and are re-stimulated by host proteins, resulting in neuroinflammation.

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Paul Keeble ME/LC @paulkeeble.co.uk · 18/06/2025

"Despite the uptick in cases, there’s been little public discussion of precautions like mask-wearing, isolation or staying at home. With guidance now unclear and testing scaled back, many people aren’t sure whether the old rules still apply" #covid www.independent.co.uk/news/health/...

independent.co.uk

Have your say: Did we learn the right lessons from the Covid pandemic?

As a new Covid variant spreads across the UK, we’re asking: did we learn the right lessons from the pandemic, or are we slipping back into old habits?

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Paul Keeble ME/LC @paulkeeble.co.uk · 15/06/2025

That was probably muscle necrosis, cellular death. It is also somewhat vascular damage and death as well, maybe oxygen depravation to the tissue resulting in cell death.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/06/2025

Title table tests looking at cerebral blood flow (CBF) and cardiac output (CO) finds 2 groups in #mecfs. 2/3rds had a 1:1 CBF drop to CO reduction. 1/3rd reduction in CO came with substantial increase in Heart Rate. No relationship between CBF/CO. www.mdpi.com/2077-0383/14...

mdpi.com

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/06/2025

Study measured the activity of nerves supplying the foot during ankle contractions finds its 25% lower in #pwme. Suggests impaired motoneuron behaviour could contribute to the muscle weakness. www.meresearch.org.uk/impaired-mot...

meresearch.org.uk

Impaired motoneuron behaviour in ME/CFS

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Reposted by Paul Keeble ME/LC

Sally Bourliakas @sallybourliakas.bsky.social · 12/06/2025

🧪 @sunny-rae1.bsky.social @johnmcdonnellmp.bsky.social Thank you Rae for the briefing on #LongCovid you gave John and John for putting it forward in today’s debate on the Pandemic

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Paul Keeble ME/LC @paulkeeble.co.uk · 12/06/2025

This compares to the GP Patient survey where 3.2 million patients said they know they have Long Covid. The Healthcare workers survey had 35% say they had Long Covid with 10% claiming they had a diagnosis. There is no way from this data that 10% were ever officially diagnosed.

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Paul Keeble ME/LC @paulkeeble.co.uk · 11/06/2025

"Despite its impact on population health outcomes, health systems, and the economy...there are limited published estimates on Long Covid, limited studies on its diagnostics and therapeutics, and limited media and news coverage." onlinelibrary.wiley.com/doi/10.1002/...

onlinelibrary.wiley.com

Long Covid: A call for global action

The COVID-19 pandemic has resulted in another global health crisis with millions of individuals with Long Covid experiencing disability, worse health-related quality of life, and productivity and inc...

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Paul Keeble ME/LC @paulkeeble.co.uk · 09/06/2025

What strikes me so much about this data is that about 15% of NZ children had an illness before Covid showed up and now that is 35%. Long Covid impacts more children than every other disease combined. We do things for those other diseases, we spend millions on them, but not Covid.

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Paul Keeble ME/LC @paulkeeble.co.uk · 09/06/2025

"Greater than one-fifth of NZ children reported persisting symptoms after Covid-19 infection. Post-Covid-19 symptoms impacted the quality of children's day-to-day lives. Preventing infection is key to preventing post-Covid-19 symptoms." #longcovid onlinelibrary.wiley.com/doi/10.1111/...

onlinelibrary.wiley.com

Post‐Covid‐19 Symptoms in Children: A Cross‐Sectional Survey

Aim To assess children's self or parental-rated health following Aotearoa New Zealand's (NZ) first widespread community transmission of SARS-CoV-2 in February 2022. Methods This cross-sectional st...

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Paul Keeble ME/LC @paulkeeble.co.uk · 26/04/2025

1. [ME/CFS] was redefined in the 1990s by a group of doctors to be about severe fatigue. 2. Their own studies show CBT and GET do not lead to improvement. 3. The GET manual does include fixed incremental increases in exertion. Sunlight on what they did! pubmed.ncbi.nlm.nih.gov/40283139/

pubmed.ncbi.nlm.nih.gov

The PACE Trial's GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS - PubMed

The British National Institute for Health and Care Excellence (NICE) published its updated guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in October 2021. NICE concluded, a...

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Paul Keeble ME/LC @paulkeeble.co.uk · 23/04/2025

European study watching people to develop ME/CFS. 5% of those watched developed mono, 34% didn't recover after six months. Of those 68% met ME/CFS definition (so about 1.16% of everyone). Those that developed ME had lower interleukins (5 and 3) before. www.meresearch.org.uk/why-might-ep...

meresearch.org.uk

Why might Epstein-Barr virus infection lead to ME/CFS in some people and not in others?

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Paul Keeble ME/LC @paulkeeble.co.uk · 23/04/2025

The Scottish parliament marks international ME day. "(ME/ CFS), which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched" www.meresearch.org.uk/scottish-par...

meresearch.org.uk

Scottish Parliament Motion to mark International ME Awareness Day

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Paul Keeble ME/LC @paulkeeble.co.uk · 22/04/2025

In health care workers, who are much better placed to know that their symptoms aren't normal or something else the meta study from today showed 40% prevalence. A lot more people have this than know it.

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Paul Keeble ME/LC @paulkeeble.co.uk · 22/04/2025

Welcome to the club of at least 400 million world wide in it all of which would very much like to leave! Its a truly dreadful disease even its mild form.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/04/2025

Mid size study out of Egypt on people infected with Covid found 83.5% of them had at least one lasting symptom six months later. Most common were fatigue, myalgia and dyspnea, hospitalised patients twice as likely to have symptoms. pubmed.ncbi.nlm.nih.gov/40217997/

pubmed.ncbi.nlm.nih.gov

Persistent Symptoms and Associated Risk Factors of COVID-19: A Cross-Sectional Study in Minia, Upper Egypt - PubMed

Background: A significant number of COVID-19 survivors around the world have been reporting persistent symptoms following their recovery. Long COVID is recognized as a condition affecting...

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