News in Brief - May 2025

Week beginning 28th April 2025

News, advocacy and articles

Documentary Doctors as Patients
A moving, honest and thought provoking documentary interviewing five medical doctors with post-acute infection-associated syndromes like ME, Long Covid and chronic Lyme. They talk about their experiences, what they were taught about these illnesses as students and what they have learned as patients. Directed by Anil van der Zee. The documentary is in Dutch and has English subtitles.
Documentary l Thread

Chronic living therapy Therapist perspective: Dan Wyke
And interview with counsellor and person with ME, Dan Wyke. "The harm caused by gaslighting by medical professionals is real and profound. It’s immensely hard for patients to live in a world that doesn’t want to acknowledge the reality of individuals’ illness and suffering. Not only can it lead to dangerous neglect but it can also cause patients to question their own sense of reality."
Interview l Thread

Australia Submission from RACGP
The Royal Australian College of General Practitioners submitted a response to the NHMRC scoping survey for the development of clinical practice guidelines for ME/CFS.
Submission | Thread

Aotearoa New Zealand National Ethics Advisory Committee publishes Finding Balance: Ethical Principles for Epidemics and Pandemics"
"Analyses of pandemic response strategies should fully consider the long-term health impacts of both the disease and delayed health service delivery."
Article | Thread

Cochrane In February and March 2025 the Science for ME committee submitted appeals about rejection of our complaints. This week Cochrane informed us that both appeals have been rejected. They say: "...our assessment concluded that the handling of the complaint strictly followed standard Cochrane processes and policies."
Cochrane's responses | Petition | Thread
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Fundraising

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on...
Final days of the crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by Monday May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.
Crowdfunding l Thread
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Coming events

Conference in Norway ME/CFS and Long Covid - Digging Deeper - 7-8 May
Large conference in Stavanger, Norway with following speakers: Carmen Scheibenbogen, Karl Johan Tronstad, Rod Wüst, David Systrom, Trude Schei, Kristian Sommerfelt, Brian Hughes, David Putrino, Anniken Sommerfelt, Michelle Bull, Øystein Fluge and Ola D. Saugstad (host). 7th May is for healthcare workers and the evening conference 8th May is open to everyone. The event is organised by the Norwegian ME Association - Rogaland.
Website l Thread

The international ME/CFS awareness day
Patient advocates are raising awareness from many countries this month in connection with the international ME/CFS awareness day May 12th.
The forum has a thread where anyone can share events, articles, campaigns and more.
Thread

NIH - RECOVER Research Review (R3) Webinar
"Understanding Metformin Use and Long COVID and ME/CFS following COVID-19 Infection: Insights from Two Studies"
Tuesday, May 13 at Noon Eastern Time
Website | Registration | Thread

Bateman Horne Center - Free Online Support Groups
Tuesday, May 13, 1:00 - 2:15 PM Mountain Time
Topic: Tapping Into the Collective Wisdom of the Group
Tuesday, May 20, 1:00 - 2:00 PM Mountain Time
Topic: Love Relationships and Illness
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread

PolyBio Spring Symposium
Zoom seminar with 10 minute research updates from 33 researchers.
Friday, May 16, 1100 ET / 1500 UTC
Details | Registration

Invest in ME Research Conference
On 30th May, the 17th Invest in ME Research International ME Conference will be held, organised by the UK charity Invest in ME Research. It will allow collaboration and networking between European and international researchers, clinicians, early career researchers, and European ME patient groups and charities.
Article | Thread

USA - Solve ME Advocacy Week 2025, scheduled for June 23 - 27, is 100% virtual this year, no in-person meetings. The deadline to register is May 12. No experience in political advocacy is necessary, training sessions are available.
Website | Registration | Thread
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Research news and commentary

Solve ME "Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID"
A recording of the Solve ME webinar from April 29 has been posted on their YouTube channel. Speakers include Liisa K. Selin, Anna Gil, Roshan Kumar, Megan L. Fitzgerald, and Rivka Solomon. Moderated by Solve ME CEO Emily Taylor.
Video | Thread

Trial by Error by David Tuller Ewing & David Joffe on Just-Published "Global Expert Consensus" on Long Covid
David Tuller speaks with Andre Ewing and David Joffe, two of the authors of the recent article "Long COVID clinical evaluation, research and impact on society: a global expert consensus".
Interview l Thread
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Research

ME/CFS and related research

Preprint
Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank — Gemma L. Samms and Chris P. Ponting
"By cross-referencing different data in UK Biobank, we show that a participant’s ME/CFS diagnosis is best supported by two or more lines of evidence. Using the most consistent evidence, and accounting for those who – due to their illness – could not participate in the UK Biobank, we estimate that the UK’s prevalence of ME/CFS is 410,000."
Article | Thread

Neuron
The gut microbiota promotes pain in fibromyalgia — Weihua Cai et al.
"Here, we show that fecal microbiota transplantation from fibromyalgia patients, but not from healthy controls, into germ-free mice induces pain and numerous molecular phenotypes that parallel known changes in fibromyalgia patients, including immune activation and metabolomic profile alterations. Replacing the fibromyalgia microbiota with a healthy microbiota substantially alleviated pain in mice."
Article | Thread

Journal of Integrative Neuroscience
Static and Kinetic Disequilibrium are Central Neural Signs in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Therapeutic Effect of Repetitive Transcranial Magnetic Stimulation — Kunihisa Miwa
Uncontrolled study. "Static disequilibrium is related to orthostatic intolerance, while kinetic disequilibrium is related to gait. Both are important symptoms that restrict activities of daily living. rTMS treatment of both the DLPFC and M1 effectively alleviated disequilibrium and resolved orthostatic intolerance."
Article | Thread

Long Covid research

Clinical Immunology
Hyper-reactivity of CD8+ T cells and high expression of IL-3 correlates with occurrence and severity of Long-COVID — Renner et al.
"Long-COVID patients showed clear signs of T cell hyper-activation predominantly in the CD8+ T cell subset with a 4-fold higher expression of CD25 and 2-fold more effector-memory T cells. Following polyclonal T cell stimulation, we found a 2-fold stronger upregulation of CD25 and a 7-fold higher release of IL-3 in Long-COVID."
Article | Thread

The Journal of Infectious Diseases
Immune disturbances in individuals with post-COVID syndrome are not characterized by enhanced SARS-CoV-2-specific immunity — Ober et al.
"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."
Article | Thread

Nature Immunology
Identification of soluble biomarkers that associate with distinct manifestations of long COVID — Gao et al.
"we found that breathlessness was strongly associated with differential protein expression" Moreover, GSEA confirmed that severe breathlessness was associated with the enrichment of several pathways that characterized the proteomic signature of long COVID, including those related to ceramide and HIV-1 Nef" "Of note, breathlessness and other symptom scores were largely independent of age and correlated only weakly with BMI"
Article | Thread

Mutation Research - Genetic Toxicology and Environmental Mutagenesis
Acute and chronic post-COVID-19 conditions: A study of genetic integrity and clinical markers — Martins et al.
"results suggest that genetic instability, as assessed by the comet assay, may not account for the clinical differences observed in post-COVID-19 syndrome" "The biochemical parameters analyzed in our study revealed important differences between the acute and chronic post-COVID groups, as well as between genders"
Article | Thread

Preprint: MedRxiv
Complement activation was not increased in patients with post-acute sequelae after mild SARS-CoV-2 infection: A prospective cohort study — Madlene Holmqvist et al.
"We analyzed the complement activation markers C3bc, C3bBbP and TCC in 48 PASC patients." "Although the patients with a mild SARS-CoV-2 infection had a trend towards more severe PASC, we could not find any significant differences in complement activation markers between these patients and controls."
Article | Thread

Preprint: MedRxiv
Long-COVID Postural Tachycardia Syndrome: A deep phenotyping study — Nicholas W. Larsen et al.
"An unexpected finding of our study was that 8.7% of LC-POTS participants exhibited aggregates of P-syn on skin biopsy"
Article | Thread

Life
Variability in Arterial Stiffness and Vascular Endothelial Function After COVID-19 During 1.5 Years of Follow-Up—Systematic Review and Meta-Analysis — Loboda et al.
Article | Thread

COVID
Long COVID Is Associated with Severe Cognitive Limitations Among U.S. Adults — Neba et al.
"Overall, 15.1% had long COVID. A higher percentage of adults with long COVID (13.1% vs. 4.1%) reported severe cognitive limitations compared to no COVID (p < 0.001)."
Article | Thread

BMC Infectious Diseases
Trajectories of persisting Covid- 19 symptoms up to 24 months after acute infection: findings from the Predi-Covid cohort study — Fischer et al.
"We identified 2 total symptom score trajectories: T1 “Mild symptoms, fast resolution” (N = 376; 67.7%), and T2 “Elevated and persisting symptoms” (N = 179; 32.3%)."
Article | Thread

Family Medicine and Community Health
Effects of the COVID-19 pandemic on individuals with chemical intolerance — Palmer et al.
"The purpose of this study was to determine if the COVID-19 pandemic had differential effects on individuals with chemical intolerances"
Article | Thread

PLOS ONE
Risk of post-acute symptoms among adults: A comparison study of severe COVID-19, pneumonia, and influenza — Caroline M. Schaefer et al.
"Those with influenza were less likely than those with COVID-19 to experience post-acute symptoms while those with pneumonia were more likely to have post-acute illness than those with COVID-19."
Article | Thread

BMC Infectious Diseases
Mitigating fatigue in long COVID patients with MYPplus: a clinical observation — Choi et al.
"This observational study aimed to evaluate the efficacy of MYPplus, an herbal formulation composed of Astragali Radix, Salviae Radix, and Aquilariae Lignum, in alleviating fatigue and brain fog in patients with Long COVID."
Article | Thread
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S4ME social media: Forum, Mastodon, Bluesky
 
Last edited by a moderator:
Week beginning 5th May 2025

News, advocacy and articles

Science for ME Fact sheet #2 - Post-exertional malaise (PEM)
Forum members have produced a fact sheet providing information about post-exertional malaise which is based on research and the experiences of many people across all severity levels of ME/CFS. We hope it will be useful for informing health professionals, carers and people with ME/CFS. This is the second of a series of planned fact sheets. They may be copied and used freely by individuals and organisations.
PEM_Factsheet.pdf | Thread

Cochrane Draft protocol survey closes this week
Mary Dimmock and Todd Davenport were part of the author team appointed by Cochrane in 2020 to write a new review of exercise therapy for ME/CFS.
As we have reported, this new review process was cancelled by Cochrane in 2024. Mary and Todd said in a letter to the ME/CFS community in March 2025: "When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment."
They set up a public consultation survey in March 2025. The survey closes on 15th May.
Letters | Thread | Protocol | Survey | Thread

Trial by Error by David Tuller Australian GPs Keep Promoting Exercise Treatments for ME/CFS
About a problematic response from The Royal Australian College of General Practitioners to the scoping survey issued by Australia's National Health and Medical Research Council regarding new ME/CFS clinical practice guidelines.
Article l Thread

Norway In an opinion piece for the research news site Forskningno, Dr. Richard Aubrey White provides a thorough critique of the study "Brief Outpatient Rehabilitation Program for Post-COVID-19 Condition" by Nerli, Wyller et al. The study claims their treatment results are clinically significant, which White argues is misleading and shows how.
Senior doctor and lead author Tom Farmen Nerli claims in a reply that the study is so promising that their treatment should be offered to the patient group as there are no other documented effective treatments available.
White's opinion piece l Nerli's answer l Thread

Bateman Horne Center has a new blog post, A Roadmap to Better Care: Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions, which discusses their newly published clinical care guide.
Blog | Clinical Care Guide (PDF) |Thread
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Coming events

See last week's news for more coming events.

International ME/CFS awareness day
Patient advocates are raising awareness from many countries this month in connection with the international ME/CFS awareness day May 12th.
The forum has a thread where anyone can share events, articles, campaigns and more.
Thread

Germany
From 12 to 13 May an international conference on ME/CFS research will take place in Berlin. It is hosted by the Charité Fatigue Center and supported by the ME/CFS Research Foundation. Speakers include David Putrino, Carmen Scheibenbogen, David Systrom, Rob Wust, and others.
Article | Thread

UK Action for ME webinar Friday 6th June, 2 to 3pm UK time.
AfME is hosting a webinar to share the latest updates from research linked to the Genetics Centre of Excellence. Speakers Dr Audrey Ryback on 2 projects on blood factors and on epidemiology, and members of the Precision Life team on their research on genetics and ME/CFS. There will also be a Q&A session with patient and public representatives.
Details | Thread
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Research

ME/CFS research

Preprint: MedRxiv
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest — Braeden T. Charlton et al.
"Patients with long COVID and ME/CFS displayed higher proportions of type IIa/IIx fibers, and signs of intrinsic mitochondrial dysfunction, observations that were not seen following bed rest."
Article | Thread

American Journal of Respiratory and Critical Care Medicine
Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: Commonalities Detected by Invasive Cardiopulmonary Exercise Testing — J. Squires et al.
Abstract only. "ME/CFS and LC share symptomatic, reduced aerobic capacity at peak exercise, which is driven by preload insufficiency and impaired systemic O2 extraction, the latter compatible with peripheral left-to-right shunting and/or limb skeletal muscle dysfunction."
Article | Thread

PhD Thesis
Molecular Epidemiologic Studies of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) — Anil Kumar
"Our second study revealed a set of potential biomarkers reflecting the complex interplay between immune dysregulation, chronic inflammation, and tissue remodeling that underlies many of the debilitating symptoms of ME/CFS."
Article | Thread

eLife
HERV activation segregates ME/CFS from fibromyalgia while defining a novel nosologic entity — Karen Giménez-Orenga et al.
"Hierarchical clustering of HERV expression profiles strikingly allowed perfect participant assignment into four distinct groups: ME/CFS, FM, co-diagnosed, or healthy, pointing at a potent biomarker value of HERV expression profiles to differentiate between these hard-to-diagnose chronic syndromes."
Article | Thread

Long Covid research

International Journal of Molecular Sciences
Persistent Monocytic Bioenergetic Impairment and Mitochondrial DNA Damage in PASC Patients with Cardiovascular Complications — Semo et al.
"Our findings reveal that CD14++ monocytes from these patients exhibit profound bioenergetic impairment, defective oxidative stress adaptation, elevated mitochondrial membrane potential, and region-specific mtDNA damage, offering mechanistic insights into the pathophysiology of PASC-related cardiovascular sequelae."
Article | Thread

Journal of Translational Medicine
Reproducibility of genetic risk factors identified for long COVID using combinatorial analysis across US and UK patient cohorts with diverse ancestries — Sardell et al.
"results demonstrate the reproducibility of long COVID disease signal found by combinatorial analysis, broadly validating the results of the original analysis. They provide compelling evidence for a much broader array of genetic associations with long COVID than previously identified through traditional GWAS studies."
Article | Thread

RMD Open
Multicentre retrospective detection of nailfold videocapillaroscopy abnormalities in long covid patients — Ginaldi et al.
"NVC shows significant microvascular damage in long covid (LC) patients compared with matched healthy controls. Dilated capillaries, microhaemorrhages, abnormal shapes and reduced capillary density are still detectable in LC patients 12 months after acute SARS-CoV-2 infection."
Article | Thread

Clinical Immunology
Prolonged alterations in red blood cell rheology following mild SARS-CoV-2 infection: Implications for microvascular health — Pazara et al.
"This study demonstrates that mild SARS-CoV-2 infection can lead to persistent alterations in RBC rheology, marked by reduced deformability and increased aggregation. These changes likely contribute to microvascular dysfunction and may underlie symptoms associated with PACS. Notably, female participants exhibited more pronounced impairments, suggesting possible sex-specific effects."
Article | Thread

Preprint: Lancet Group
VEGFA Sex-Specific Signature is Associated to Long COVID Symptom Persistence — Farré Ramon et al.
"This study provides novel insights into the pathophysiology of long COVID, uncovering significant immune dysregulation, vascular remodelling, and sex-specific differences." "These findings highlight critical mechanisms that may contribute to the long-term effects of the disease and suggest a need for sex-specific approaches in both diagnostics and treatment."
Article | Thread

Metabolomics
Longitudinal lipoprotein and inflammatory mediators analysis uncover persisting inflammation and hyperlipidemia following SARS-CoV-2 infection in long COVID-19 — Bae et al.
"Our results demonstrate fluctuations in the lipoproteins in LC at some time points but become consistent from month from month 5 to month 20."
Article | Thread

Cortex
Persistent neurocognitive deficits in long COVID: Evidence of structural changes and network abnormalities following mild infection — Samanci et al.
"findings indicate that even mild COVID-19 can result in persistent neurocognitive deficits, structural brain alterations, and functional network abnormalities, both in individuals with and without brain fog."
Article | Thread

International Journal of Psychophysiology
History of COVID-19 infection is associated with disrupted cardiovascular stress response habituation in physically active people — Mahon et al.
"persons classified as having never been infected with COVID-19 exhibited lower [diastolic blood pressure] responses to the second stress exposure compared to the first, indicative of ordinary habituation" "history of COVID-19 was associated with significantly elevated average HR throughout the procedure."
Article | Thread

Frontiers in Psychology
Dynamic brain glymphatic changes and cognitive function in COVID-19 recovered patients: a DTI-ALPS prospective cohort study — He et al.
"brain lymphatic circulation in both cerebral hemispheres exhibited dynamic changes, with the highest level of lymphatic activity observed at 3 months post-recovery. The changes in the brain lymphatic circulation were significantly correlated with the overall cognitive function and mental fatigue"
Article | Thread

Psychiatry Research
Cognitive impairment and associated neurobehavioral dysfunction in post-COVID syndrome — Schmidt et al.
"the poorer task performance of the PC as compared to the HC is attributable to cognitive impairments such as selective attention and working memory, while the function of the reward system remains unaffected"
Article | Thread

Nature Scientific Reports
Genome-wide association study of post COVID-19 syndrome in a population-based cohort in Germany — Ruß et al.
Article | Thread

Journal of Neurology
Need for awareness and surveillance of long-term post-COVID neurodegenerative disorders. A position paper from the neuroCOVID‐19 task force of the European Academy of Neurology — Bereczki et al.
"An increase in the incidence of neurodegenerative diseases might be expected."
Article | Thread

Nature Communications
The risk of Long Covid symptoms: a systematic review and meta-analysis of controlled studies — O’Mahoney et al.
Article | Thread

Preprint: Research Square
Proteomic signatures of Post-Vaccination/Post-Infection Syndrome (PV/PIS): Insights into immune dysregulation and coagulopathy — Maxine Waters et al.
"we performed a proteomic analysis of plasma from 30 individuals with PV/PIS compared to healthy controls. Using mass spectrometry, we identified significant alterations in coagulation factors, acute phase proteins, and immune response modulators in the PV/PIS group."
Article | Thread
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S4ME social media: Forum, Mastodon, Bluesky
 
Week beginning 12th May 2025

News, advocacy and articles

USA - Solve ME Advocacy Week 2025
The registration deadline for Advocacy Week has been extended to May 27, 2025. Anyone in the USA is encouraged to volunteer, all activites are online, no experience necessary.
Announcement | Thread

Germany
The rising cost of Long COVID and ME/CFS in Germany. This new report by Risklayer and the ME/CFS Research foundation estimates the costs of Long Covid and ME/CFS in Germany to be €63.1 billion or 1.5% of GDP in 2024.
Article | Thread

ME Awareness Day / World ME Day 2025
News coverage of protests and other events held for May 12 can be found in this forum Thread.

New Zealand ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies
Journalist Zoe Madden-Smith from Re: News has looked into the controversy about ME/CFS in a short but informative documentary and news article. It features Rose Silvester, Anna Brooks, ME patients Rhiannon Purves and Tammy Rumsey, family carer Glenys Rumsey and friend Holly Jackson. Glenys Rumsey is a retired nurse and has developed a shared care home for severe ME sufferers in her house. Duration 16 min.
YouTube l News article l Thread

Sweden Professor Jonas Bergquist was on the morning television programme Nyhetsmorgon this week talking about ME. A short clip from the interview is available with the headline: Common flu can become ME.
Clip l Thread

A Life Hidden Courage Exists in the Darkest of Places - by Naomi Whittingham
"As we approach ME Awareness Week (12th – 18th May) I, in common with many others, can summon little enthusiasm for “raising awareness”. There is a sense of futility in shouting into the void, and an unwillingness to confront a wider reality that rarely seems to change for the better. What I do feel, though, on re-reading the tributes to my friends, is a wish to acknowledge the courage that exists within our community."
Article l Thread

Denmark According to a paywalled article in the medical newspaper Dagens Medicin, professor Per Fink, who has been central in Denmark's psychosomatic approach to ME, is stepping down. He recently resigned as Chief Physician for Functional Disorders at Aarhus University Hospital.
Article l Thread
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Research news and commentary

The Sick Times "Following the Spring 2025 PolyBio Symposium on Long COVID and related diseases"
Coverage of the May 16 symposium, a day of "virtual presentations discussing studies into Long COVID’s underlying biology, updates to clinical trials, and research on other complex chronic diseases."
Article | Thread

Trial by Error by David Tuller
When Primary Outcomes Yield Null Results in Clinical Trials, FND Experts Prefer Their Secondary Outcomes
Tuller provides examples of "post-hoc primary outcome re-positioning" by FND researchers. "When a major trial yields null primary outcome results, rejecting the primary outcome after-the-fact and deciding it was a success based on secondary outcomes is not a great look."
Article l Thread

A Letter Seeking a Correction in FMD Physiotherapy Paper
Tuller has written to the editor of Neurology Clinical Practice asking for a correction of the paper "Cost Utility of Specialist Physiotherapy for Functional Motor Disorder (Physio4FMD). "Hunter et al. are implying that the SF-36 was the wrong primary outcome for their specialist physiotherapy trial – even though the investigators have promoted it for years as the most appropriate measure for assessing their FMD intervention. It is understandable that they would now want to downplay the importance and relevance of the SF-36, given that it yielded null results."
Article l Thread

Pushback on "Brief Outpatient Rehab" Trial for Long Covid from Norwegian Ideological Brigades
On a recent article by biostatistician Richard Aubrey White and his take-down of an unimpressive Long Covid rehabilitation study by Nerli et al. "It is refreshing when other academics issue their own challenges to the kinds of self-evident methodological lapses that mar this study and so much of this research."
Article l Thread
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Research

ME/CFS research

Springer Protocols Methods in Molecular Biology
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Methods and Protocols — Tate and Peppercorn (Editors)
"This detailed volume explores [ME/CFS] and the recent techniques used to investigate the dysfunctional pathophysiology in patients […] by covering the chronic cellular and molecular changes in the peripheral immune system that affect their molecular homeostasis, metabolic changes, as well as imaging technologies" "lists of the necessary materials and reagents, step-by-step and readily reproducible laboratory protocols, and tips on troubleshooting and avoiding known pitfalls."
Article | Thread

The Journal of Immunology
Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome — Bastos et al.
"We found no significant differences between IgG autoantibodies between the plasma and CSF of ME/CFS and healthy individuals. However, we observed generally lower IgM autoantibody reactivities in ME/CFS when compared with healthy control subjects."
Article | Thread

Preprints.org
A Systems Hypothesis: Reverse Cholesterol Transport Dysfunction, Arachidonic Acid Accumulation, and Noradrenergic Imbalance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Tamara Carnac
"This paper proposes a unifying hypothesis centred on dysfunction of lecithin–cholesterol acyltransferase (LCAT) and deficiency of phosphatidylcholine (PC), leading to altered membrane lipid composition, excess arachidonic acid release, and chronic inflammation."
Article | Thread

Biomedicines
Evaluating the Causal Role of Genetically Inferred Immune Cells and Inflammatory Cytokines on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Duan et al.
"We employed Mendelian randomization (MR) to investigate associations between 91 inflammatory cytokines, 731 immune cell characteristics, and the risk of ME/CFS."
Article | Thread

Journal of Translational Medicine
The potential therapeutic approaches targeting gut health in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a narrative review — Hsu et al.
"The main objective of this review was to synthesize qualitative and quantitative data from research examining the gut microbiota composition, inflammatory markers, and therapeutic outcomes of interventions targeting the microbiome in the context of ME/CFS."
Article | Thread

Cardiopulmonary Physical Therapy Journal
Self-Reported Disablement in People Living With Long Covid and Myalgic Encephalomyelitis: A Cross-Sectional Comparative Study — Graves et al.
"This study suggests similarities in impacts on self-reported function and the associated burden of achieving a meager level of functioning regardless of precipitating event for PENE."
Article | Thread

BMJ
Patients with severe ME/CFS need hope and expert multidisciplinary care - Miller et al.
Alastair Miller, Paul Garner and colleagues have published a commissioned opinion piece in which they argue that recovery from ME/CFS is possible through cognitive behavioural treatments. The claim that "the unproved narrative of a disease with no cure, improvement, or recovery can be harmful and is erroneous."
Article | Thread

Four rapid responses have been published which criticise the opinion piece:
Long Covid research

Allergy
Gastrointestinal Barrier Disruption in Post-COVID Syndrome Fatigue Patients — Johanna Rohrhofer et al.
"Our data propose that SARS- CoV-2 disrupts pathways associated with innate immune responses and GI barrier function during the acute infection phase, leading to long-term intestinal low-grade inflammation and mucosal barrier leakage." "We identified a pre-existing impaired GI barrier, clinically indicated by GI complaints, as a risk factor for developing PCS Fatigue."
Article | Thread

PLOS ONE
Self-reported health, neuropsychological tests and biomarkers in fully recovered COVID-19 patients vs patients with post-COVID cognitive symptoms: A pilot study — Michael R. Lawrence et al.
"Serum levels of nerve growth factor (NGF), a biomarker of brain plasticity, were significantly lower in the long COVID group, which was significantly more likely than controls to have serum levels of inflammatory marker (interleukin (IL)-10) values greater than or equal to the median (p = 0.015)."
Article | Thread

SLEEP Advances
Facility-measured nocturnal hypoxemia and sleep among adults with long COVID versus age- and sex-matched healthy adults: a preliminary observational study — Sun et al.
"We found that patients with long COVID compared to healthy controls had a persistent lower nocturnal blood oxygen saturation" "This difference emerged as early as 5 to 10 minutes after sleep onset." "We also found that the long COVID participants had reduced sleep efficiency, longer sleep latency and REM latency, less REM and N2 sleep, and less N3 in the first half of the night."
Article | Thread

Preprint: BioRxiv
AI-based decoding of long covid cognitive impairments in mice using automated behavioral system and comparative transcriptomic analysis — Heba M Amer et al.
Mouse study. "The IntelliCage behavioral testing platform revealed significant differences in working memory, higher cognitive abilities, and behavioral flexibility between LC and control mice." "we show that even 30 days post-infection, the gene expression profile in the brain remains distinct from healthy controls."
Article | Thread

Human Vaccines & Immunotherapeutics
Detection of S1 spike protein in CD16+ monocytes up to 245 days in SARS-CoV-2-negative post-COVID-19 vaccine syndrome (PCVS) individuals — Bruce K. Patterson et al.
"While S1 persistence and a PASC-like cytokine profile were detected, causality remains unproven due to limited sample size and variable S1 presence."
Article | Thread

Health Expectations
Long Covid Symptom Clusters, Correlates and Predictors in a Highly Vaccinated Australian Population in 2023 — Essa Tawfiq et al.
"One-in-five people may suffer long Covid after acute Covid-19 infection, with similar risk across age groups. Omicron variants appear not to have a lower risk compared to earlier variants in our study."
Article | Thread

Pediatrics International
Long-COVID in children and their parents: A prospective cohort study — Hiroyuki Iijima et al.
"Even 6 months after SARS- CoV-2 infection, 22.8% of pediatric patients still had long-COVID symptoms. Some of these symptoms were similar to those of ME/CFS, potentially affecting children's [quality of life]."
Article | Thread

Journal of Infection
Symptom Burden and Post-COVID-19 Syndrome 24 Months Following SARS-CoV-2 Infection: Longitudinal Population-Based Study — Raphael S. Peter et al.
"we found a relatively high prevalence of PCS-typical symptom clusters two years after SARS-CoV-2 infection, which was similar in magnitude to the prevalence six to 12 months after initial infection but represented both improvement among previously affected individuals as well as emergence of new symptoms or worsening among previously non-affected persons."
Article | Thread

Preprint: MedRxiv
Long COVID risk and severity after COVID-19 infections and reinfections in Quebec healthcare workers — Sara Carazo et al.
"The risk of long COVID was ∼15% with first COVID-19 infection, but three-fold lower with reinfections. Risk was higher with COVID-19 infections due to ancestral strains and with more severe acute episodes. Long COVID risk and severity compromised self-rated health, physical capacity and cognitive function."
Article | Thread

Frontiers in Psychiatry
Course of neuropsychological health in post-COVID patients differs 6 and 12 months after inpatient rehabilitation — Müller et al.
"The results showed that the improvements direct after rehabilitation in mental health and fatigue severity could not be maintained six and 12 months after rehabilitation discharge."
Article | Thread
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S4ME social media: Forum, Mastodon, Bluesky
 
Week beginning 19th May 2025

News, advocacy and articles

UK Press Awards The winner of the Campaign of the Year award was the Times Newspaper for 'M.E. Awareness and Reform', including its coverage of the inquest into the death of Maeve Boothby O'Neill, daughter of senior Times journalist Sean O'Neill.
Thread | Interview with Sean O'Neill (Duration 13 minutes) | Thread

Physics Girl First Update From Dianna (Physics Girl)
Science communicator Dianna Cowern/Physics Girl suffers from ME/CFS and Long Covid. She has been completely bedbound, but has now improved a bit. In this video she provides an update, talks about life with the diagnoses and about her close friend Tobias who is also suffering from very severe ME/CFS. Duration: 12 minutes
YouTube l Thread

Long Covid Advocacy Substack article on Mindfulness in medicine and as LC/ME/Chronic pain treatment
A thorough article in two parts on the deeply problematic aspects with Mindfulness as medical treatment.
Part 1: Mindfulness Rebranded: Misappropriation in Modern Medicine
"Welcome to this critical exploration of therapeutic uses of mindfulness and meditation in medicine. Together, we shall look at the skyrocketing of mindfulness in healthcare, examine its assimilation into cognitive behavioural therapy during its third wave, and unpack the influential role of Jon Kabat-Zinn."
Part 2: Behind the Biological Veneer: A Closer Look at the BMJ, SIRPA and Garner's Framing of Chronic Illness
"This article explores how cognitive therapies contribute to a dangerous medical paradigm for chronic illness. We shall focus on Paul, ‘he’s not the messiah, he’s a very naughty boy’, Garner’s opinion piece for the BMJ and his appearance at the SIRPA conference"
Part 1 l Part 2 l Thread

Aotearoa New Zealand Do-A-Dare for ME
NZ comedian, writer, winner of The Traitors NZ show, and pwMS Sam Smith is invited to do a dare to help raise funds for ME Support NZ
YouTube | Thread
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Coming events

Invest in ME Research Conference
On 30th May, the 17th Invest in ME Research International ME Conference will be held, organised by the UK charity Invest in ME Research.
Article | Thread

Action for M.E. Webinar
Genetics Centre of Excellence: update on recent research
Friday, June 6, 2 to 3 PM
Announcement | Thread
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Research news and commentary

Polybio
The Polybio spring symposium of 2025 is now available to rewatch on YouTube. It includes talks from researchers such as Resia Pretorius, Michael Peluso, Akiko Iwasaki, Michael VanElzakker, and David Putrino.
Videos | Thread

Solve ME/CFS Initiative
Solve ME/CFS Initiative hosted the webinar “Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID,” with Solve Ramsay Research Grant Winners Dr. Liisa Selin and Dr. Anna Gil (Selin Lab), Roshan Kumar, PhD (HiFiBiO Therapeutics), and patient advocates Rivka Solomon, MS, and Megan L. Fitzgerald, PhD.
Video | Thread

Solve ME "Exploring Current ME/CFS and Long COVID Clinical Trials on National Clinical Trials Day"
An article listing some ongoing clinical trials to mark National Clinical Trials Day, May 20.
Article | Thread

Bateman Horne Center "A New Path for ME/CFS and Long COVID"
In another post for National Clinical Trials day this blog post focuses on investigator-initiated trials, or IITs.
Article | Thread

Australia Mason Foundation awards $1.44 million
Dr Katherine Huang – Predicting post-exertional malaise in ME/CFS with digital biomarkers – $360,000
Dr Francesca Alves – Modelling and treating energy deficiency in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) – $359,970
Dr Benjamin Heng - Validating a novel blood-based biological signature to diagnose and manage myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – $356,694
Dr Sarah Annesley – miRNA alterations in ME/CFS: Unpacking the role of S6K, viruses and metabolism – $359,405.
Announcement | Thread

Trial by Error by David Tuller BMJ Published New Propaganda Piece on Severe ME/CFS
About the infamous BMJ opinion piece by Miller "written by confirmed members of the cognitive behavior therapy/graded exercise therapy/Lightning Process ideological brigades". (See items last week and below)
Article l Thread

Several new rapid responses have appeared on the BMJ website, commenting on the article by Miller and colleagues on severe ME/CFS.
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Research

ME/CFS research

Journal of Clinical Medicine
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test — van Campen and Visser
"there are two distinctive POTS patient groups: those with a limited CO reduction during the tilt test and those with a large CO reduction during the test."
Article | Thread

European Journal of Cardiovascular Medicine
Assessment of Vitamin D Deficiency Prevalence in Adults with Chronic Fatigue Syndrome: A Cross-Sectional Study — Pon. Saranya, Vikrannth Vasanthakumar, N. Deepthi
"Among the 100 participants, 68% were found to have Vitamin D deficiency, 22% had insufficiency (20–30 ng/mL), and only 10% had sufficient levels (>30 ng/mL)."
Article | Thread

International Journal of Molecular Sciences
HERV Dysregulation in a Case of Myalgic Encephalomyelitis and Multiple Sclerosis Responsive to Rituximab — Martín-Martínez et al.
Article | Thread

Long Covid research

Nature Genetics
Genome-wide association study of long COVID — Lammi et al.
"Our functional analysis further implicated FOXP4 as a risk factor for long COVID, irrespective of the genotype status of the here‑identified risk variant. FOXP4 expression levels were higher in individuals with long COVID than controls. Furthermore, we observed a consistent effect of FOXP4 risk variants across ancestries. Moreover, having multiple ancestries enabled us to fine‑map a likely causal variant at rs9381074, which was further supported by functional methylation and expression data."
Article | Thread

International Journal of Molecular Sciences
LEF1-AS1 Deregulation in the Peripheral Blood of Patients with Persistent Post-COVID Symptoms — Madè et al.
"We found that LEF1-AS1 levels were significantly reduced in the PBMCs of patients with [major physical symptoms] compared to those without"
Article | Thread

Frontiers in Medicine
Elevated adipokines and myokines are associated with fatigue in long COVID patients — Visconti et al.
"This study offers a novel perspective on the interplay between critical illness, muscle metabolism, and persistent fatigue in postCOVID patients."
Article | Thread

Imaging Neuroscience
Long COVID-related blood-brain barrier breakdown and microstructure in older adults are modified by sex and Alzheimer’s disease genetic risk — Reas et al.
"Our results extend preliminary findings from another [dynamic contrast enhanced] MRI investigation reporting frontal-temporal BBB breakdown in a small sample of women with long COVID-related brain fog to suggest that BBB disruption […] may be a more widespread, whole-brain phenomenon."
Article | Thread

Life
Cognitive Slowing, Dysfunction in Verbal Working Memory, Divided Attention and Response Inhibition in Post COVID-19 Condition in Young Adults — Takács et al.
"The present study revealed significant long-lasting cognitive dysfunction in PCC in young adults, two years after COVID-19 infection. Verbal working memory was significantly impaired, and a lower performance was found in divided attention and response inhibition."
Article | Thread

American Journal of Physiology-Regulatory, Integrative and Comparative Physiology
Sympathetic Neural Overdrive, Vascular Dysfunction and Diminished Exercise Capacity in Long COVID-19 Patients: A Long-Term Study of Cardiovascular Sequelae — Bruna E. Ono et al.
"reduced aerobic exercise capacity was associated with sympathetic neural outflow, vascular dysfunction, cardiac morpho-functional alterations, and circulating markers of oxidative stress."
Article | Thread

Frontiers in Molecular Biosciences
Low‐Dose naltrexone restored TRPM3 ion channel function in natural killer cells from long COVID patients — Sasso et al.
"In this study, we performed whole-cell patch-clamp experiments to investigate the effects of LDN on TRPM3 ion channel activity in NK cells freshly isolated from long COVID patients receiving LDN treatment. Our results provide the first evidence of LDN benefits in restoring TRPM3 ion channel function in NK cells from long COVID patients."
Article | Thread

PLOS ONE
Comparison of long COVID, recovered COVID, and non-COVID Post-Acute Infection Syndromes over three years — Caleb R. Carr et al.
"The similarities between long COVID and non-COVID PAIS imply that factors related to persistent or new symptoms following some acute infectious diseases may be independent of the infectious agent."
Article | Thread

BMC Women's Health
Long COVID and endometriosis: a systematic review and meta-analysis — Vallée et al.
"While our findings suggest a possible association between endometriosis and long COVID, the evidence is currently limited to two observational studies."
Article | Thread

Frontiers in Epidemiology
Estimating Long COVID-19 prevalence across definitions and forms of sample selection — Lovaglio et al.
"Risk factors included female sex (OR 2.165-2.379), metabolic disease (OR 1.587-1.629), and older age (40-50 years, OR 1.847). Protective factors included antiplatelets (OR 0.640-0.689), statins (OR 0.616), and hypoglycemics (OR 0.593-0.706). Vaccination, hydroxychloroquine, and antibiotics were associated with an increased risk of LC."
Article | Thread
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S4ME social media: Forum, Mastodon, Bluesky
 
Week beginning 26th May 2025

Notice to our readers - forum software upgrade
The Science for ME forum will be unavailable for a day or more on the weekend Saturday 7th and Sunday 8th June. This means publication of the weekly news will be delayed. Any delays to coming back on line will be notified on Bluesky.
Thread | Bluesky
_______________________

News, advocacy and articles

Scotland The ME Association has been informed that NHS Scotland will now use the 2021 NICE ME/CFS guideline, NG206, instead of the Scottish Good Practice Statement on ME/CFS.
Article | Thread

UK ME Association PIP assessments for people with ME/CFS: DWP training and guidance for PIP assessors.
The MEA has posted a copy of this document about disablity benefit assessments obtained through Freedom of Information. "If you are making a claim for PIP, or challenging a PIP decision, you should find this information helpful."
Article | Thread

OpenMind Chronic Denial - David Tuller
Great article by Tuller on how the debunked psychosomatic approach to ME/CFS is being repurposed in order to also dismiss Long Covid. Physician-scientist Mady Hornig tells of her experience with Long Covid and says: “If a doctor who has known me for a long time could suggest that post-Covid tachycardia and other symptoms likely reflected some deep-seated unconscious neuroses, then how would anyone without a medical background manage to be properly heard and guided through this?”
Article l Thread

Australia ME/CFS Legal Resources response to NHMRC guideline development scoping survey
305 page report. The Executive Summary "calls for the NHMRC to review the Scoping Survey and Committee composition against its requirements under Guidelines Handbook and calls for better compliance, improved communications"
Thread

Norway The public broadcaster NRK writes about severe ME patient Kamilla who is fighting to get sufficient care at home. She says: "For me and thousands of others in the same situation, it's simply a matter of having the hope of getting better in a safe everyday life at home with personal assistance. Rather than being exposed to injuries, trauma and deterioration of health in a healthcare institution."
Article l Thread

UK Physios for ME Dr Michelle Bull gave a talk hosted by the Sheffield ME and FM group on 20th May titled: Using national and international best practice to improve services locally with special mention of physiotherapy. Duration 1 hour.
Video | Thread

#MEAction USA - The #MillionsMissing Share Their Stories 2025
A video slide show of photos sent in by the community for the Millions Missing 2025 protest in Washington, DC on May 12. These photos represent all the people who wanted to be at the protest but were unable to attend.
Video | Thread
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Coming events

Action for M.E. Webinar Genetics Centre of Excellence: update on recent research
Friday, June 6, 2 to 3 PM
Speakers Dr Audrey Ryback, Research Fellow working under Professor Chris Ponting at the University of Edinburgh; and the Precision Life team who are researching genetics and ME/CFS. Register in advance to attend. A recording will be made available afterwards.
Announcement | Thread

Bateman Horne Center - Free Online Support Groups
Tuesday, June 10, 1:00 - 2:00 PM Mountain Time
Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Anxiety and Fear
Tuesday, June 17, 1:00 - 2:00 PM Mountain Time
Topic: Radical Acceptance: Embracing Life without Condition
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread

Solve ME Webinar Probing Functional Autoantibodies in Patients with ME/CFS
Dr. Akiko Iwasaki will present and take questions afterwards if time allows.
Thursday, July 31, 12 pm Pacific / 3 pm Eastern
Details | Registration | Thread
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Research news and commentary

UK DecodeME posted an update on social media.
"This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible. We are on target to deliver the results before the completion of the study in August and appreciate your continued patience and support."
Thread

Trial by Error by David Tuller More on the BMJ Opinion Piece from the Psychobabblers
Background information on problematic aspects with the journal BMJ's attitude towards ME dating all the way back to 1989.
Article l Thread

BMJ
Several new rapid responses have appeared on the BMJ website, commenting on the article by Miller and colleagues on severe ME/CFS.
...............

Research

ME/CFS research

Preprint: Qeios
A Proposed Mechanism for ME/CFS Invoking Macrophage FcγRI and Interferon Gamma — Jonathan Edwards et al.
"Evidence bearing on possible mechanisms for the clinical syndrome of ME/CFS is reviewed. The evidence is used to argue for a hypothesis that centres on a form of persistent, inappropriate, ‘neuroimmune hypervigilance’ mediated primarily by T lymphocyte-macrophage interaction but influenced by IgG antibody binding to the gamma interferon-inducible high affinity immunoglobulin receptor FcγRI."
"One possibility is that the process responsible for generalised symptoms in ME/CFS involves signals that are facilitated in muscle, and/or associated fibrous tissue, by matrix-bound regulatory proteins, with sensitisation of nerve fibres involved in the perception of pain and ’fatigue’ without other overt features of inflammation."
Article | Thread

Virology Journal
Causal relationship between immune cells and post-viral fatigue syndrome: a Mendelian randomization study — Wang et al.
"Among the features of B cells, we identified five that are associated with an increased risk of PVFS, suggesting their potential role as risk factors. Notably, the upregulation of CD24 on CD24+ CD27+ cells stands out with a significant OR of 1.795."
Article | Thread

Journal of Clinical Medicine
The Effect on Quality of Life of Therapeutic Plasmapheresis and Intravenous Immunoglobulins on a Population of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Elevated β-Adrenergic and M3-Muscarinic Receptor Antibodies—A Pilot Study — Oesch-Régeni et al.
Article | Thread

Long Covid research

PAIN
Postacute COVID-19 syndrome and fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive — Berwick, Richard J. et al.
"as RC2 (recovered) participants, reporting no pain or fatigue, demonstrated equally strong staining, anti-SGC staining titre alone seems insufficient to explain symptoms in PACS. Instead, high staining in the recovered PACS group likely indicates a persistent immunological imprint from recent infection (2-6 months prior)."
Article | Thread

Clinical Immunology
Proteomic profiling of serum small extracellular vesicles predicts post-COVID syndrome development — Dobra et al.
"Our study also verified the significant alterations in some complement components, such as C1 inhibitor, C3, and C5, within the sEV proteome of post-COVID patients." "The presence of complement components in sEVs indicates that the complement cascade may play a pivotal role in the development of post-COVID syndrome"
Article | Thread

Brain, Behavior, and Immunity
Serum antineuronal antibodies in patients with post-COVID-19 condition − association to intensive care — Posharina et al.
"the association between seropositivity and ICU admission suggested systemic immune activation rather than a specific autoantibody-mediated mechanism"
Article | Thread

Preprint: MedRxiv
Preload insufficiency as common denominator of exertional dyspnoea in distinct post-COVID phenotypes — G Oruqaj et al.
"high dyspnoea was linked to high heart rate, fast breathing during exercise and low lung volumes, which are all signs of preload insufficiency and low diastolic function" "the severity of dyspnoea was associated with reduced right heart volumes, in particular, low RA ESAi, and function, both at rest and during exercise"
Article | Thread

Preprint: Research Square
Exercise-induced Changes in Microclotting and Cytokine Levels Point to Vascular Injury and Inflammation in People with Long COVID — Callum Thomas et al.
"Our findings reveal that submaximal exercise induces a shift in microclot size distribution: specifically, a decrease in the proportion of larger microclots (100–3000 µm²) is accompanied by a relative increase in smaller microclots (> 0–30 µm²) post-exercise." "The patterns demonstrated here suggest that larger microclots undergo fragmentation rather than clearance during exercise"
Article | Thread

British Journal of General Practice
The importance of diagnosis from the perspectives of young people with Long COVID, their parents, and healthcare professionals — Alice Faux-Nightingale et al.
Article | Thread

Nature Scientific Reports
Spatial transcriptomics of the epipharynx in long COVID identifies SARS-CoV-2 signalling pathways and the therapeutic potential of epipharyngeal abrasive therapy — Nishi et al.
Article | Thread
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