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Paul Keeble ME/LC

@paulkeeble.co.uk
1.8K followers 375 following 630 posts

ME since 2017 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 ( (Severe)

PostsRepliesMedia
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
🧵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_meEducation
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 · 16/07/2025
"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/
pubmed.ncbi.nlm.nih.gov
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...
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Paul Keeble ME/LC @paulkeeble.co.uk · 13/07/2025
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...
nature.com
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
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Paul Keeble ME/LC @paulkeeble.co.uk · 13/07/2025
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/
pubmed.ncbi.nlm.nih.gov
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...
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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
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
<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...
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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 · 26/06/2025
"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/...
independent.co.uk
‘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
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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
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
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 · 16/06/2025
Nature is going to be including the peer review comments alongside its papers in the future for transparency and showing the process. www.nature.com/articles/d41...
nature.com
Transparent peer review to be extended to all of Nature’s research papers
From today, all new submissions to Nature that are published will be accompanied by referees’ reports and author responses — to illuminate the process of producing rigorous science.
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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
Electronic records in the UK looking for patients coded as Long Covid finds just 36886. That is far worse than the 70,000 that were referred to clinics meaning many were never diagnosed. This is appallingly bad. #longcovid bjgpopen.org/content/earl...
bjgpopen.org
Patient characteristics associated with clinically coded long COVID: an OpenSAFELY study using electronic health records
Background Clinically coded long COVID cases in electronic health records are incomplete, despite reports of rising cases of long COVID. Aim To determine patient characteristics associated with clini...
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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
"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 · 28/04/2025
"Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis" pubmed.ncbi.nlm.nih.gov/40293208/
pubmed.ncbi.nlm.nih.gov
Digital Long Covid Communities-Shaping Diagnoses, Treatment Strategies and Modes of Expertise - PubMed
The project operates under the premise that patients from different social, cultural and professional backgrounds participate in online discussions about long Covid and that these individuals work tow...
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Paul Keeble ME/LC @paulkeeble.co.uk · 27/04/2025
#longcovid patients showed -clear signs of T cell hyper-activation predominantly in the CD8+ T cell subset - 4-fold higher expression of CD25 - 2-fold more effector-memory T cells - 7-fold higher release of IL-3 - 5-fold more IL-3-expressing CD8+ pubmed.ncbi.nlm.nih.gov/40287027/
pubmed.ncbi.nlm.nih.gov
Hyper-reactivity of CD8+ T cells and high expression of IL-3 correlates with occurrence and severity of long-COVID - PubMed
Following SARS-CoV-2 infection, some individuals develop Long-COVID-syndrome lasting for more than 3 months. We analyzed blood samples from patients with Long-COVID, controls without persistent sympto...
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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 · 26/04/2025
"Persistent immune disturbances in individuals with PCS [#longcovid] are characterized by reduced SARS-CoV-2-specific T cell responses, increased B cell activation, and altered inflammatory and vascular biomarkers." pubmed.ncbi.nlm.nih.gov/40279368/
pubmed.ncbi.nlm.nih.gov
Immune disturbances in individuals with post-COVID syndrome are not characterized by enhanced SARS-CoV-2-specific immunity - PubMed
Persistent immune disturbances in individuals with PCS are characterized by reduced SARS-CoV-2-specific T cell responses, increased B cell activation, and altered inflammatory and vascular biomarkers....
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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 · 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
<span><b>Background:</b> 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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Paul Keeble ME/LC @paulkeeble.co.uk · 07/04/2025
How to hide a pandemic 1. Green-mapping - Redefining terms 2. Calm-mongering - Downplaying the harms 3. DARVO- Freedom! 4. Myth-making 5. False framing - Bad assumptions and Dilemmas 6. Othering - "Vulnerable" 7. Data Manipulation - Slow down testing howtohideapandemic.substack.com/p/how-to-hid...
howtohideapandemic.substack.com
How to Hide a Pandemic
A closer look at the techniques used by the Public Relations exercise that passes for Public Health strategy these days
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Paul Keeble ME/LC @paulkeeble.co.uk · 07/04/2025
Jared Younger on why most people get rejected from clinical trials. At various sizes only a small percentage get accepted - Small 5% - Medium 10% - Large 30% This is to reduce variability (drugs,other conditions) and improve the chance of significance. www.youtube.com/watch?v=1w51...
youtube.com
052 - Why most people are excluded from clinical trials
YouTube video by Neuroinflammation, Pain, and Fatigue Lab at UAB
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Paul Keeble ME/LC @paulkeeble.co.uk · 07/04/2025
On RFK "It’s been a dark time, very disheartening and devastating...while no administration has given the necessary resources to tackle Long COVID or any infection-associated chronic condition, the attacks that are happening now will set us back" thesicktimes.org/2025/04/07/l...
thesicktimes.org
Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC - The Sick Times
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing edit...
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Paul Keeble ME/LC @paulkeeble.co.uk · 03/04/2025
"Our findings show that older women who assessed their health as poor had a higher risk of dying early than those who rated their health as good," A "well duh" finding but not in medicine, medicine ignores what the patient says and prefers its tests. www.sciencenorway.no/cancer/if-pa...
sciencenorway.no
'If patients say they have poor health, it should be taken seriously'
Researchers find a clear link between how we perceive our own health and the risk of becoming ill and dying early.
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Paul Keeble ME/LC @paulkeeble.co.uk · 03/04/2025
MEA's Count ME study of 10458 diagnosed ME/CFS and Long Covid patients. 78.2% of ME patients had PEM, 88.2% fatigue and sleep issues. Similar in Long Covid. "22.1% diagnosed within 1–2 years of symptom onset and 12.9% taking more than 10 years"🧵 bmjopen.bmj.com/content/15/4...
bmjopen.bmj.com
Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK
Objectives This study aims to provide an in-depth analysis of the symptoms, coexisting conditions and service utilisation among people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) ...
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Paul Keeble ME/LC @paulkeeble.co.uk · 03/04/2025
A lot of people harmed by treatments and refusal of treatment. The harm biases towards women, financially deprivation and the long term ill and they were more harmed. The discussion about this on the reddit NHS shows this wont be accepted🧵 pubmed.ncbi.nlm.nih.gov/40174977/
pubmed.ncbi.nlm.nih.gov
Patient-reported harm from NHS treatment or care, or the lack of access to care: a cross-sectional survey of general population prevalence, impact and responses - PubMed
We found that 9.7% of the British general population reported harm by the NHS, a higher rate than reported in two previous surveys. Our study used a broader and more inclusive definition of harm and w...
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Paul Keeble ME/LC @paulkeeble.co.uk · 01/04/2025
A tiny little local newspaper vastly outperforms the big guys by describing ME/CFS including a lot of the optional symptoms and just informs people without any spin. Its probably one of the best straight forward "disease you don't know about" articles. www.getsurrey.co.uk/news/health/...
getsurrey.co.uk
Little-known condition that makes you 'tired all the time'
The long-term condition has no known cure say the NHS
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Paul Keeble ME/LC @paulkeeble.co.uk · 01/04/2025
"SARS-CoV-2 infection indirectly leads to profound and post-acute COVID-19 alterations in the stomach at the cellular and molecular levels, resulting in adverse outcomes following co-infection with SARS-CoV-2 and H. pylori." pubmed.ncbi.nlm.nih.gov/40157534/
pubmed.ncbi.nlm.nih.gov
Post-COVID-19 effects on chronic gastritis and gastric cellular and molecular characteristics in male mice - PubMed
SARS-CoV-2 infection indirectly leads to profound and post-acute COVID-19 alterations in the stomach at the cellular and molecular levels, resulting in adverse outcomes following co-infection with SAR...
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Paul Keeble ME/LC @paulkeeble.co.uk · 31/03/2025
"the mean time to obtaining a lupus diagnosis was reported to be almost seven years. Three out of four respondents said they had received at least one misdiagnosis along the way" Huge long term impacts of Psychosomatic misdiagnosis found. virology.ws/2025/03/31/t...
virology.ws
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Paul Keeble ME/LC @paulkeeble.co.uk · 28/03/2025
"Paying for reviews moderately improved both the number of accepted invitations and the speed at which reviews were carried out." "Journal editors assessed reviews from paid and unpaid reviewers and found no difference in quality." www.nature.com/articles/d41...
nature.com
Publishers trial paying peer reviewers — what did they find?
Two journals embarked on efforts to compensate reviewers, with different results.
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Paul Keeble ME/LC @paulkeeble.co.uk · 28/03/2025
"Practitioners at the event providing Long Covid services verbalised they have been facing loss of direct NHS funding, and having to bid for funding from their Integrated Care Board. This has included merging with ME/CFS services in some instances." meassociation.org.uk/2025/03/the-...
meassociation.org.uk
The MEA attended the Clinical Post Covid Society Conference in Birmingham on Wednesday - The ME Association
The MEA were pleased to be at the Clinical Post […]
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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 · 27/03/2025
"ME/CFS patients, compared to controls, have a significantly higher load of EBV. IFN-I autoAbs cannot explain IFN-I dysfunction" IFN-I dysfunction could be due to viral evasion and degradation of IFN-I receptors needs to be studied. pubmed.ncbi.nlm.nih.gov/40143349/
pubmed.ncbi.nlm.nih.gov
Prevalence of EBV, HHV6, HCMV, HAdV, SARS-CoV-2, and Autoantibodies to Type I Interferon in Sputum from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients - PubMed
An exhausted antiviral immune response is observed in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-SARS-CoV-2 syndrome, also termed long COVID. In this study, potential mechani...
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Paul Keeble ME/LC @paulkeeble.co.uk · 27/03/2025
30 person Hungarian MRI study looking at Post COVID infection headache sufferers. "Persistent post-COVID-19 headaches may be linked to structural white matter changes observed in MRI." www.mdpi.com/2035-8377/17...
mdpi.com
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Paul Keeble ME/LC @paulkeeble.co.uk · 27/03/2025
"“I understand there is this enthusiasm to support chronic disease. Well, long COVID is the exemplar of chronic disease,” Al-Aly says. “I would like to remind RFK, Jr. that he told the nation ... he’s going to prioritize research on long COVID" www.scientificamerican.com/article/hhss...
scientificamerican.com
HHS’s Long COVID Office Is Closing. What Will This Mean for Future Research and Treatments?
The Office for Long COVID Research and Practice was instrumental in coordinating the U.S. government’s initiatives to treat, diagnose and prevent the mysterious postviral condition that affects millio...
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