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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 · 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

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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Paul Keeble ME/LC @paulkeeble.co.uk · 03/04/2025

"half of the diagnosed patients (3026, 47.6%) were seen in a hospital-based ME/CFS specialist service. NHS GPs saw most diagnosed (4758, 74.9%) and undiagnosed (177, 63.0%) patients."

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Paul Keeble ME/LC @paulkeeble.co.uk · 03/04/2025

NHS experience after being diagnosed with ME/CFS, 33.76% described their experience as very poor, poor and mixed experiences were also commonly reported, with 18.39% and 25.52%. Only 5.29% reported good experiences , excellent 1.39% or did not know 0.53%.

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Paul Keeble ME/LC @paulkeeble.co.uk · 27/03/2025

A "map" created by NIHR of 639 studies of ME/CFS from January 2018 to May 2023. Concerningly only 11% of studies included people with postexertional malaise. The map of types of studies (7) and goals is quite interesting as is the bias chart (9). meassociation.org.uk/2025/03/nihr...

A chart of the 16 bias measures they used with studies assessed as low, unclear and high bias as well as no information. The worst is Study funding which almost all studies have high bias, followed by impact of bias and publication bias. Study Select is notable at a third with high bias but that isn't accounting that just 11% of studies required PEM.

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Paul Keeble ME/LC @paulkeeble.co.uk · 19/02/2025

Retractions seem to cluster on a number of institutions rather than individuals suggesting poor regulation within those universities. 60% are affliated with China. Ethiopia, Saudi Arabia Iraw and Pakistan have high retraction rates, 10x somewhere like the USA or UK. www.nature.com/articles/d41...

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Paul Keeble ME/LC @paulkeeble.co.uk · 18/02/2025

Sometimes you come across a study and you think "really?". This is one of them, using lasers on blood to cure brain fog. Showed big improvements apparently. pubmed.ncbi.nlm.nih.gov/39960888/

Lasers for brainfog image isuggesting improved oxidative phosphorylation and reduced neuroinflammation and improved cognitive and sleep.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/02/2025

Wages over time really cuts through the medical misinformation on ME/CFS. This norwegian study showed just 5% improved to something more like median wages, 38% moved to a lower wage. The impact on wages appeared 3 years before diagnosis. www.meresearch.org.uk/wages-earned...

Wages earned before ME/CFS
The serious, complex and often long-term nature of ME/CFS, means that the disease often impacts a person's ability to work and earn an income.
Change in income might provide a rough indicator of ME/CFS severity over time.
A Study from Norway considered wages earned in 1523 people diagnosed with ME/CFS-like illness in 2016.
Results showed that compared with the wage category in 2015, in 2018
5% moved to a higher wage
57% remained in the same wage category
38% moved to a lower wage category.
Notably 38% who remained in the same wage category continued to warn no wages.

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Paul Keeble ME/LC @paulkeeble.co.uk · 29/01/2025

Cataloging the proteins made inside a human cell has found a number of previously unknown proteins that are relatively short consisting of a few amino acids and we have no idea what they do coming from genes we had assumed was excess. www.nature.com/articles/d41...

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Paul Keeble ME/LC @paulkeeble.co.uk · 20/11/2024

Andrew who posted on Phoenix Rising has died on the 5th November. 😢 #mecfs

A blue rose, signifies a death in the ME/CFS community.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/11/2024

This is a truly bizarre finding. The higher incoming countries offer less services really notably they don't treaty paediatric Long Covid at 1/3 of low income hospitals. Maybe the suppression of Long Covid and its treatment is a western medical thing not a world wide problem!

4 graphs of telemedicine, paediatric patient enrolment, psychology support and multidisciplinary teams compared Low, medium and High income countries. In all cases Low income offers more than mid income and both offer more than high income.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/11/2024

This graph shows the extent of the problem and how varied the care is with most offering very little in medical services.

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Paul Keeble ME/LC @paulkeeble.co.uk · 13/11/2024

Iraq multicentre mid size study with control looking at likely neurological Long Covid (not WHO criteria). Found antibodies against neuronal proteins elevated and somewhat correlated with #LongCovid severity. Some patients appear to have this, not all. www.sciencedirect.com/science/arti...

Graphs of Health controls verses Long Covid in 3 graphs for Synapsin IgG, Synapsin IgM and Synapsin IgA showing some Long Covid patients have more of these antibodies. All of them with significance p < 0.05. Quite a lot of overlap for most patients with controls with maybe 10-30% outside of healthy range.

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Paul Keeble ME/LC @paulkeeble.co.uk · 08/09/2024

L-Arginine (1.6g) and Vitamin C (500mg) for 30 days in a big study (>1300) people shows big improvements compared to a multivitamin on a variety of subjective symptoms in Long Covid patients. These are not small improvements they are massive improvements in QoL for a lot of people.

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