Paul Keeble ME/LC

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.

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-...

Solriamfetol improves daily fatigue symptoms in adults with myalgic encephalomyelitis/chronic fatigue syndrome after 8 weeks of treatment - Joel L. Young, Richard N. Powell, Anna Powell, Lisa L. M. We... Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term illness with no treatment options that address the disease directly. Solr...

journals.sagepub.com/doi/10.1177/...

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.

"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...

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.

"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...

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

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...

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.

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.

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.

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.

🧵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....

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.

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

Adverse Effects of the Long-term use of an N95 Respirator in Healthcare Workers - PubMed Using an N95 respirator for 4 h continuously did not adversely affect work efficiency. Although prolonged work under conditions of discomfort should be avoided, it is unlikely that N95 respirators wil...

"Using an N95 respirator for 4h continuously did not adversely affect work efficiency... it is unlikely that N95 respirators will adversely affect the performance of healthcare workers."

pubmed.ncbi.nlm.nih.gov/40666495/

Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study - Molecular Psychiatry Molecular Psychiatry - Brain and muscle chemistry in myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and long COVID: a 7T magnetic resonance spectroscopy study

7T brain and calf muscle MRS looking into energy metabolism finds increased lactate in #mecfs (CDC criteria) and reduced choline in #longcovid (>=2 fever, shortness of breath, persistent cough, taste/smell, all fatigued). No difference in Creatine found.

www.nature.com/articles/s41...

Post-COVID-19 Condition in Track and Field Master Athletes: Severity, Symptoms, and Associations With Quality of Life and C-Reactive Protein Levels - PubMed Here, we assessed the prevalence of post-COVID-condition (PCC, also known as long-COVID) and investigated its associations with health-related quality of life and immune-related biomarkers in track an...

Master Athletes get #LongCovid too, including severe. They didn't find the usual female 2:1 ratio it seemed even between the sexes.

Also found a link between blood CRP and self reported cardiac and flu like symptoms.

pubmed.ncbi.nlm.nih.gov/40650463/

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’

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...

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

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-...

"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...

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

Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders - PubMed <span><b>Background/Objectives:</b> The aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic and severe debilitating disease with a complex phenotype, remains elusive. A...

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/

Improvement on Ferrous Ion Accumulation and Mitochondrial Dysfunction in the COVID-19 Pseudovirus-Infected Cell Model Simulating the Long COVID Status by Nutritional Strategy - PubMed The pandemic caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has plunged the world into a major crisis of overwhelming morbidity and mortality and emerged various mutant str...

Lactoferrin, Q10 and Echinacea purpurea extract nutritional strategy to suppress ferrous ion accumulation, ROS formation and advanced mitochondrial dysfunction.

pubmed.ncbi.nlm.nih.gov/40566632/

🧵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...

‘We haven’t learned anything’: Readers despair over UK’s Covid response in 2025 Many of the protections and behaviours that helped us during the pandemic — like staying home when sick, wearing masks, and improving ventilation – have quietly disappeared, say Independent readers

"The things we learned – about clean air, proper sick pay, the importance of staying home when ill – are being forgotten, even though the virus hasn’t gone away."

#covid

www.independent.co.uk/news/health/...

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.

www.nature.com/articles/d41...

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.

"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."

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%.

061 - Low dose rapamycin for ME/CFS YouTube video by Jarred Younger, PhD

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...

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...

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.

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.

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...