This thread has a Science for ME 'News in Brief' post for each week in February 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 3rd February 2025 News, advocacy and articles Sweden The current guidelines for post covid and other infectious related illnesses (including ME/CFS) has received a lot of criticism, among other for promoting GET. The Swedish Government has now asked The National Board of Health and Welfare and the Swedish Agency for Health Technology Assessment and Assessment of Social Services to produce new knowledge about Long Covid and to get an overview of the care of children with LC. Thread with more information UK #ThereForME Exploring the barriers that impact access to NHS care for people with ME and Long Covid - Karen Hargrave A short article highlighting problems people with ME/CFS have accessing suitable NHS care. Posted on the Patient Safety Learning website, with opportunity for people to join and add their experiences. Article | Thread ................ More on Cochrane's actions (see December and January news) The Sick Times "Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review Great article by David Tuller with a longer recap of the Cochrane saga. Two members of the writing team that was appointed by Cochrane to update the review provide comments: Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies" Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients" Tuller concludes: ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well." Article l Thread Science for ME Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it Trish Davis and Maree Candish, on behalf of the Science for ME committee, have submitted a detailed set of five complaints with supporting evidence. The submission concludes: "We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients." Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-opening the decision not to withdraw the 2019 review. Complaint | Discussion thread Trial by Error by David Tuller Professor Edwards' Letter to BMJ on the Cochrane Mess A short recap of the latest developments concerning Cochrane's decision to abandon its update of their review on exercise therapy for ME/CFS. Also a repost of Jonathan Edwards' letter to BMJ about the same issue. Article l Thread ................ Resources The Swedish Covid Association has made a guide for researchers including how to design studies for patients with PEM. They also have a guide/checklist for people who want to participate in studies. Guide for researchers l Guide for participants l Thread ................ Research ME/CFS research International Journal of Molecular Sciences Exertional Exhaustion (Post-Exertional Malaise, PEM) Evaluated by the Effects of Exercise on Cerebrospinal Fluid Metabolomics–Lipidomics and Serine Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Baraniuk "The elevation of serine in cerebrospinal fluid in ME/CFS was a key finding because of the many metabolic relationships that were uncovered." "Increased sphingomyelins and hexylceramides implicated brain white matter dysfunction" "Exercise led to consumption of lipids in ME/CFS and SC, but metabolites were consumed by ME/CFS and produced in SC." Article | Thread Journal of Translational Medicine The search for a blood-based biomarker for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): from biochemistry to electrophysiology — Clarke et al. Review. "work in the identification of new markers, both biochemical and electrophysiological, offers hope for a better understanding of the ME/CFS pathophysiology and would provide measurable evidence for the ME/CFS diagnosis, helping to validate patients within the health professions and in wider society." Article | Thread Journal of the American Heart Association Cerebral Blood Flow in Orthostatic Intolerance — Muhammad Shahzeb Khan et al. Review. "Because of the poor sensitivity of diagnostic criteria relying on heart rate and BP such as that of POTS and OH, we recommend the incorporation of CBF monitoring as the core diagnostic criteria of cerebral autoregulatory abnormality." Article | Thread Fatigue: Biomedicine, Health & Behavior Stellate Ganglion Block reduces symptoms of SARS-CoV-2-induced ME/CFS: A prospective cohort pilot study — Deborah L. Duricka and Luke D. Liu "Symptoms of ME/CFS were reduced after treatment with SGBs in this small prospective cohort pilot study." Article | Thread OBM Neurobiology Measuring Post-Exertional Malaise with DePaul Symptom Questionnaires: Challenges and Opportunities — Jason "The objective of this article is to describe the challenges and opportunities of the PEM questions of the DePaul Symptom Questionnaires (DSQ)" Article | Thread Long Covid research Preprint: MedRxiv Reproducibility of Genetic Risk Factors Identified for Long COVID using Combinatorial Analysis Across US and UK Patient Cohorts with Diverse Ancestries — Jason Sardell et al. "These findings redefine our understanding of long COVID by uncovering a broad spectrum of reproducible genetic signatures, laying the foundation for new diagnostic innovations and targeted therapies that have the potential to revolutionize care for millions suffering from this debilitating condition worldwide." Article | Thread BMJ Open Diabetes Research & Care Association of glycemic control with Long COVID in patients with type 2 diabetes: findings from the National COVID Cohort Collaborative (N3C) — Soff et al. "This study shows that in people with T2D, poorer glycemic control with HbA1c≥8% increases the risk of developing Long COVID after COVID- 19 infection, specifically with respiratory symptoms and brain fog." Article | Thread Clinical Infectious Diseases Long-COVID incidence proportion in adults and children between 2020 and 2024 — Mandel et al. "After accounting for potential background levels of long-COVID-like symptoms, excess incidence was estimated to be 1.4% in children and between 5-6% among adults." "Temporal patterns were consistent across networks, with peaks associated with introduction of new viral variants." Article | Thread Frontiers in Oncology Prevalence and risk factors for long COVID among cancer patients: a systematic review and meta-analysis — Hongkun Xu et al. "Nearly a quarter of cancer patients will experience long COVID after surviving from SARS-CoV-2 infection, and this would even last for 1 year or longer." Article | Thread JAMA Pediatrics Long COVID Prevalence and Associated Activity Limitation in US Children — Nicole D. Ford et al. "In 2023, approximately 1 014 000 (1.4%) of children had ever experienced PCC and an estimated 293 000 (0.4%) were currently experiencing PCC at time of interview." Article | Thread Biology Methods and Protocols Association of cognitive deficits with sociodemographic characteristics among adults with post-COVID conditions: Findings from the United States household pulse survey — Wu and Liu "This study based on a large cohort representative of the US adult population has found significant differences in the cognitive outcomes associated with COVID infections among various sociodemographic groups. Individuals who are older or highly educated are more vulnerable to cognitive deficits" Article | Thread Clinical Autonomic Research Chronic autonomic symptom burden in long-COVID: a follow-up cohort study — Eastin et al. "taken together, these findings suggest that up to one in three patients with LC are at risk of developing POTS, especially female patients with joint hypermobility." Article | Thread Microorganisms Post-COVID-19 Small Fiber Neuropathy as a New Emerging Quality of Life-Threatening Disease: A Systematic Review — Bandinelli et al. "The recent literature supports persistent inflammation and immune activation as plausible mechanisms, but at present it remains unclear whether they are solely responsible for PASC-SFN." Article | Thread Frontiers in Neurology Neurological sequelae of long COVID: a comprehensive review of diagnostic imaging, underlying mechanisms, and potential therapeutics — Talkington et al. "In this review, we explore the mechanistic hypotheses of these neurological changes, which describe CNS invasion, neuroinflammation, blood-brain barrier disruption, and gut-brain axis dysregulation, along with the novel vascular disruption hypothesis that highlights endothelial dysfunction and hypoperfusion as a core underlying mechanism." Article | Thread Journal of Clinical Medicine Differential Fatigue Profile in Patients with Post-COVID Condition, Fibromyalgia, and Multiple Sclerosis — Oliver-Mas et al. "Fatigue intensity was significantly higher in PCC and fibromyalgia compared to MS. Some differences in fatigue characteristics were observed: MS patients reported more fatigue in response to heat and a greater impact of mood on fatigue. Furthermore, delayed fatigue and reduced benefits from rest were more pronounced in both PCC and fibromyalgia." Article | Thread Preprint: MedRxiv Molecular and Immunological Signatures of Long COVID: Implications for Diagnosis and Personalized Treatment Strategies — Jorine K.N. Hammink and Tim R. van Elst "Logistic regression models revealed that mRNA spike data alone in this small group was insufficient to predict symptoms presence, but the inclusion of immunoglobulins and inflammatory markers significantly improved predictive accuracy." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 10th February 2025 News, advocacy and articles Issues in Science and Technology "Centering Patients in Long COVID Research" by Brian Vastag Thorough article on the importance of including patients in research initiatives on Long Covid, on previous and current challenges and lessons from the history of ME/CFS. ".... patients’ visibility and voices are likely key to developing effective treatments for long COVID" Article l Thread Norway Patient advocate Lena Kjempengren-Vold has written a good opinion piece for the Journal of the Norwegian Medical Association about how professionals with a biopsychosocial approach of ME, such as the Oslo Chronic Fatigue network and the COFFI network, talk about ME patients, not with them. She describes how this leads to the continuation of treatments such as CBT and GET, despite patients and research reporting they are harmful. Professor Vegard Bruun Bratholm Wyller from the COFFI network wrote a response proving her point by claiming it's difficult to understand what she meant and further that CBT/GET are safe and documented treatments for ME. Kjempengren-Vold's article l Wyller's response l Thread The Sick Times "Now offline: Government resources about Long COVID as a disability" Discusses the deletion of Long Covid disability information from some US government websites. Similar information about ME/CFS, POTS, and Lyme disease was not deleted. However, current law has not changed and "people with Long COVID are still legally entitled to accommodations." Article | Thread #MEAction has posted a new video, #MEAction Shares the Love. This is a compilation of images from members who were asked to "send in an image of a heart with the word(s) that describe why you love the #MEAction community." Video | Thread Trial by Error by David Tuller GET Ideologues Try to Rebut Muscle Abnormality Study-and Fail About a rebuttal by Rob Wüst et al to a letter criticising their study which reported a link between PEM and muscle abnormalities in Long Covid patients. "It is a pleasure to read a pointed and effective smack-down of an ill-informed argument, especially when the argument is pushing the graded exercise therapy/cognitive behavior therapy (GET/CBT) paradigm for ME/CFS, Long Covid and related illnesses." See item below. Article l Thread ................... More on Cochrane - again Petition The S4ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' has been running for 17 months and has over 15,700 signatories. It will remain open while the review remains. The latest petition update, 'Significant revelations', highlights articles by journalists Martin Rücker in RiffReporter, and David Tuller in The Sick Times. It also updates on S4ME complaints. (see previous weeks' news) Petition | Update | Thread Letter from Cochrane On 14th February the S4ME committee received a brief response from Cochrane Complaints apologising for not responding to S4ME's previous complaints. The letter says they carried out an investigation in 2024, including looking at the NICE, CDC and German evidence reviews and their own rules. "The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal." Letter | Thread Hilda Bastian, leader of the Independent Advisory Group appointed by Cochrane in 2020 to advise the group writing the now cancelled new review, has continued to take actions related to the cancellation. She has set up a page to record her public actions, including: "My open letter asking the Cochrane Board questions about transparency of governance and minutes." Hilda's page | Thread ............. Research ME/CFS research Nature Communications The Dutch research team of Brent Appelman and Rob Wust have written a reply to the critique by Ranque et al., explaining that the abnormalities in the muscle tissue of Long Covid patients are unlikely due to deconditioning. Article | Thread Frontiers in Human Neuroscience A network medicine approach to investigating ME/CFS pathogenesis in severely ill patients: a pilot study — Hung et al. "By utilizing a network analysis on whole genome sequencing (WGS) data from the Severely Ill Patient Study (SIPS), we identified ME/CFS-associated proteins" Article | Thread Thesis: The University of Manchester What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis — Emma Williams "Feeling misunderstood was at the heart of many psychological and educational experiences." "All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs." Thesis | Thread Biomedicines Cross-Sectional Study Evaluating the Role of Autonomic Nervous System Functional Diagnostics in Differentiating Post-Infectious Syndromes: Post-COVID Syndrome, Chronic Fatigue Syndrome, and Lyme Disease — Milovanovic et al. "patients with Lyme disease exhibited reduced baroreceptor sensitivity and diminished changes in frequency domain heart rate variability parameters during orthostatic stress. Parasympathetic dysfunction was less prevalent in the Lyme disease group, while the Post-COVID syndrome and Chronic Fatigue Syndrome groups showed more pronounced autonomic imbalances." Article | Thread Preprint: medRxiv Unveiling Sleep Dysregulation in Chronic Fatigue Syndrome with and without Fibromyalgia Through Bayesian Networks — Michal Bechny et al. "Using a strictly controlled cohort of young-to-middle-aged females, we identified the effects of CFS and CFS+FM on alteration sleep and its dynamics, supporting their clinical differentiation." Article | Thread Long Covid research Autonomic Neuroscience Quantitative serum proteomic analysis for biomarker discovery in post-COVID-19 postural orthostatic tachycardia syndrome (PC-POTS) patients — Ryu et al. "Both the integrin signaling pathway and the blood coagulation pathway showed the best enrichment significance, followed by the cytoskeletal regulation by Rho GTPase pathway." "Out of the 31 proteins, 28 proteins (MTPN, TAGLN2, ADP-ribosylation factor 1, PDLIM1, PLEK, PPIA, CNN2, TPM4, LGALSL, TXN, SERPINA5, PFN1, PARK7, MANF, CA2, CALML3, TLN1, COTL1, CFL1, RAB7A, FLNA, TUBA4A, ILK, TREML1, RSU1, FGA, F11, and GP1BA) displayed a significant increase, while only 3 proteins (IGHG2, SFTPB, and IGHG4) were significantly decreased." Article | Thread Preprint: MedRxiv Integrative Multi-Omics Framework for Causal Gene Discovery in Long COVID — Sindy Pinero et al. "our model revealed potential network driver genes, highlighting factors such as TP53, CREBBP, EP300, YWHAG, SMAD3, and GRB2 that may play crucial roles in network control." Article | Thread The Lancet Infectious Diseases Targeting the SARS-CoV-2 reservoir in long COVID — Amy D Proal et al. "a growing body of research centres around the persistence of SARS-CoV-2 as a driver of disease in at least some individuals." "Here, we draw from RNA virus biology, efforts to target the HIV reservoir, and clinical oncology to outline major considerations for the design and implementation of trials targeting SARS-CoV-2 persistence in long COVID." Article | Thread Immunology Impact of Pre-Infection COVID-19 Vaccination on the Incidence and Severity of Long COVID: A Retrospective Case–Control Study — Elena Barado et al. "In this study, complete vaccination prior to acute COVID-19 infection is associated with a reduction in the risk of developing long COVID in the multivariate analysis. Within the population affected by long COVID, complete vaccination before acute infection is associated with a reduction in long COVID symptoms and a reduced overall symptom count." Article | Thread JAMA Network Open Pediatric Gastrointestinal Tract Outcomes During the Postacute Phase of COVID-19 — Dazheng Zhang et al. "The cohort consisted of 1 576 933 pediatric patients" "the risk of abdominal pain was higher in COVID-19–positive patients during the postacute (2.54% vs 2.06%; ARR, 1.14; 95% CI, 1.11-1.17) and chronic (4.57% vs 3.40%; ARR, 1.24; 95% CI, 1.22-1.27) phases." Article | Thread Journal of Clinical Medicine Exploring Hypercoagulability in Post-COVID Syndrome (PCS): An Attempt at Unraveling the Endothelial Dysfunction — Muys et al. "When [Thrombomodulin] was included […] thrombin generation was notably higher" "Although we could not demonstrate a higher level of vWF in all PCS patients, 12.4% did […] all besides one exhibited a VWF(Ag)/ADAMTS13 ratio ≥ 1.5 […] all these patients presented with hypoperfusion in the frontal lobes or perfusion heterogeneity on cerebral perfusion scintigraphy." Article | Thread Frontiers in Neurology Chronic fatigue and headache in post-COVID-19 syndrome: a radiological and clinical evaluation — Almeida et al. "Our findings suggest a need to re-evaluate the role of MRI in managing patients with post-COVID-19 syndrome. The absence of a clear structural correlation with common symptoms such as fatigue and headaches indicates that MRI findings, while useful in excluding structural brain abnormalities, may not provide actionable insights for guiding therapeutic interventions." Article | Thread BMC Public Health Healthcare utilization patterns before and after a long COVID diagnosis: a case-control study — DeVoss et al. "We found significant changes in the patterns of healthcare utilization after an LC diagnosis. Most notably, patients increased outpatient utilization within a year after diagnosis, including visits to specialists, while reducing hospitalizations and ED utilization relative to controls and relative to the pre-diagnosis period." Article | Thread Journal of Global Health Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: a cohort observation study — Owen et al. "The data demonstrates little or no improvement over 16 weeks, while the frequency of contact throughout the study demonstrates the episodic and relapsing nature of long COVID." Article | Thread Preprint: BioRxiv Identification of a multi-omics factor predictive of long COVID in the IMPACC study — Gisela Gabernet et al. "Notably, our list of top androgenic steroid metabolites has strong overlap with the androgenic steroid signature from an independent all-female cohort of healthy controls compared to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) patients." Article | Thread Preprint: MedRxiv Post-Viral Frailty in Long COVID: A Distinct Phenotype within Veterans — Jerry Bradley et al. "Frailty is defined as the decline of physiologic reserve that leads to increased vulnerability to stressors and poor health outcomes." "Patients with frailty in the Long COVID group experienced exhaustion and low activity at a higher rate than those in the Geriatric frailty clinic." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 17th February 2025 News, advocacy and articles SciShow Exercise Actually Makes Chronic Fatigue Syndrome Worse SciShow is a YouTube channel offering science news for a large audience. In this 8 minute video on why exercise doesn't work as a treatment for ME/CFS, they've managed to cover a lot of the details, including the infamous PACE trial. Video l Thread UK The Times Plan to help ME sufferers has been delayed for too long - Helen Morgan, MP "The numbers affected have skyrocketed after the pandemic but healthcare provision remains dire." Morgan says the plan needs to be well resourced. Link | Archive link Plan to help ME sufferers will not include extra funding "Charities and MPs ‘incredibly disappointed’ at government’s decision, which they say will make it harder to support patients and find new treatments." Link | Archive link | Thread Trial By Error by David Tuller A Letter to Cochrane's Editor-in-Chief Tuller has sent a letter co-signed by 46 professionals to Dr Karla Soares-Weiser, Cochrane's editor-in-chief. The letter concerns Cochrane's decision of abandoning a planned update of their controversial review of exercise as treatment for ME/CFS. They ask for the review to be withdrawn, or at least that it's tagged with an editorial note making it clear it's out of date. Article l Thread Petition update Cochrane responds to our 2023 complaints As well as a copy of the brief and unsatisfactory response to S4ME complaints, this update highlights the SciShow video and David Tuller's letter (see above items). Petition | Update | Thread The Sick Times "Without clear clinical guidelines in México, people with Long COVID face gaslighting and erasure" Long COVID may affect millions of Mexicans, but a lack of information prohibits adequate medical care and innovative research. Article | Thread The Sick Times "Trump commands HHS to terminate advisory committee on Long COVID" An executive order has instructed the US Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID. Article | Thread Germany Robert Habeck, the Vice Chancellor of Germany helped to raise awareness of ME/CFS on social media by participating in the Lemon challenge. Article | Thread ........... Research news and commentary Medscape "New Five-Type Index Provides Doctors Guide for Long COVID" An analysis of long COVID patients, part of the NIH's RECOVER COVID Initiative, has identified five subtypes. Article | Thread Griffith University 4th ME/CFS, long COVID and Gulf War Illness International Conference: 2025 RID - Research, Innovation and Discovery To be held at Tweed Heads, NSW, Australia, 12-13 November 2025 Registration | Thread ........... Research ME/CFS research Frontiers in Immunology Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome — Ryback and Cowan "the repertoires of ME/CFS patients did not display features relating to somatic hypermutation that would suggest defects in central tolerance, clonal selection or affinity maturation, or chronic antigen stimulation." "An increased ratio of IgM to IgG in [mild-moderate] patients is an exploratory result and would need to be replicated" Article | Thread Physiology Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Abu Mohammad Syed et al. Review. "Exercise intolerance and slow recovery from fatigue after physical exertion are hallmark symptoms of ME/CFS. From a bioenergetic perspective, these exertional symptoms could be explained by the rapid depletion and slow regeneration of ATP, slow oxidative metabolism of fuel substrates, and increased oxidative stress in skeletal muscle, all secondary to impaired mitochondrial function." Article | Thread International Journal of Environmental Research and Public Health Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Jones and Younger "White respondents had significantly greater odds of being diagnosed with ME/CFS than non-White respondents. These findings suggest racial disparities in the diagnostic processes for ME/CFS. Furthermore, diagnosis of ME/CFS, but not meeting ME/CFS criteria, was associated with poorer satisfaction with healthcare, suggesting the diagnosis itself may present barriers in the management of symptoms." Article | Thread The American Journal of Medicine Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops — Eleanor J. Thornton et al. "Eight individuals with ME/CFS participated in six one-hour long online co-production workshops with two researchers, with the option to provide input through written responses. Additionally, three health practitioners shared their perspectives via email. Thematic analysis of the data identified several key recommendations for improving ME/CFS care." Article | Thread Long Covid research Journal of Imaging Non-Hospitalized Long COVID Patients Exhibit Reduced Retinal Capillary Perfusion: A Prospective Cohort Study — Lyons et al. "OCT-A evaluates the exquisitely small retinal microvasculature in a quantitative way that cannot be achieved by conventional brain MRI" "We found a significant reduction in [Deep Capillary Plexus Vessel Length Density], suggesting a reduction in the perfusion of the smallest capillary vessels" Article | Thread Preprint: MedRxiv Integrative Genome-Wide Association Studies of COVID-19 Susceptibility and Hospitalization Reveal Risk Loci for Long COVID — Zhongshan Cheng "This approach addresses the inherent limitations of long COVID-specific GWAS, such as limited sample sizes and phenotype heterogeneity, by utilizing proxy phenotypes like SARS-CoV-2 susceptibility and COVID-19 hospitalization." "By categorizing genetic variants into three groups—those associated with hospitalized COVID-19, those linked to both hospitalized and non-hospitalized cases, and those specific to non-hospitalized cases—our findings provide a scalable framework to investigate the genetic underpinnings of long COVID." Article | Thread Preprint: BioRxiv Immunological and clinical markers of post-acute sequelae of COVID-19: Insights from mild and severe cases six months post-infection — William Mouton et al. "The present study highlighted that the immune alterations observed in patients with PASC cannot be considered a universal feature, since they are significantly influenced by the severity of the initial COVID-19 episode and PASC heterogeneity, which encompasses a wide range of symptoms and mechanisms." Article | Thread The Lancet Regional Health – Americas Differences in Long COVID severity by duration of illness, symptom evolution, and vaccination: a longitudinal cohort study from the INSPIRE group — Michael Gottlieb et al. "In this prospective study following participants up to 40 months after initial SARS-CoV-2 infection, we found the majority of participants with Long COVID did not experience resolution, with only 2% having resolved Long COVID." Article | Thread Journal of Proteome Research Proteomics Reveals That Vitamin D Deficiency Leads to Immunoglobulin Abnormalities and Immune Dysregulation in Patients with Post-COVID-19 Condition — Wenrui Ji et al. "we found in PCC patients with VD ≤ 30 ng/mL, the expression of heavy chains (IGHV4−28, GHV4−34, and IGHM) and light chains (IGLV 2−11) significantly increased, indicating an abnormally increased transcription of the framework region 1 (FR1) of the immunoglobulin heavy and light chains, as well as the hypervariable region 1 (HVR1) of the heavy chain." Article | Thread Psychological Medicine Altered corticostriatal connectivity in long-COVID patients is associated with cognitive impairment — Marie Troll et al. "Patients with long-COVID present enhanced [Functional Connectivity] between the caudate and the left precentral gyrus. Furthermore, those FC alterations are related to the severity of cognitive impairment, particularly in the domain of executive functions." Article | Thread Biomolecules Circulating Autoantibodies Against Vasoactive Biomarkers Related to Orthostatic Intolerance in Long COVID Patients Compared to No-Long-COVID Populations: A Case-Control Study — Han et al. "A trend towards higher plasma levels of Beta-2 AR and Ang1-7 was measured in long COVID patients, not related to presence of orthostatic intolerance." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 24th February Part 1 of 2 parts News, advocacy and articles Australia National Health and Medical Research Council The NHMRC has been tasked by the Minister for Health to develop clinical practice guidelines for myalgic encephalomyelitis/chronic fatigue syndrome. Submissions close 27 Apr 2025. Link | Make Submission | Thread UK The Sunday Times If we can’t learn from errors, families relive tragedy for nothing - Sean O'Neill "The inquest into my daughter’s death showed me that the system is almost entirely broken" Article | Archived article | Thread How a promising triathlete was left bedridden by cruel disease - Julieanne Corr "James Walton was aiming for the world championships when he was suddenly struck down by chronic fatigue syndrome. He is now calling for more research into ME" Article | Archived article | Thread USA - Alaska A proposal in the state of Alaska to recognize ME/CFS on May 12th has been unanimously passed in the state Senate. It must now pass in the state House before it can become law. Article | Thread Cochrane appeal The Science for ME committee has submitted an appeal about the letter we received giving us the outcome of a complaint we submitted in January 2025 that summarised our unanswered complaints dating back to October 2023 and March 2024. We asked for copies of reports and minutes, names of those involved in the investigation and decision, and a new unbiased review of the decision not to withdraw the Larun et al review. Appeal | Thread Bateman Horne Center & Solve ME Severe ME/CFS Webinar Series Session 4: Research A recording of the final session of the webinar series on Severe ME/CFS is now available. A transcript is also available. Video | Transcript | Thread Sweden There was recently an article in AllmänMedicin, a journal for GPs, promoting The Oslo Chronic Fatigue Consortium and their opinion piece against the NICE ME/CFS Guidelines. The article has now gotten a well written and critical response from the Swedish ME Association RME and several professionals including Professor Bergquist, Dr. Julin and Dr. Norén. Response (in Swedish) l Thread with link to translation Norway The Norwegian ME Association - Oslo and Akershus with Tone Vindegg filmed a conversation with Professor Ola Didrik Saugstad and patient advocate Mette Schøyen about current research into ME. Duration: 38 minutes. YouTube (in Norwegian) l Thread .......... Research news and commentary Trial by Error by David Tuller Trudie Chalder is Co-Author on Another Bad Exercise Paper Tuller points out several weak aspects of the study "Post-Hospitalisation COVID-19 rehabilitation (PHOSP-R): A randomised controlled trial of exercise-based rehabilitation" (Daynes et al). Article l Thread .......... Coming Events Bateman Horne Center - Free Online Support Groups Tuesday, March 11, 1:00 - 2:00 PM Mountain Time Topic: My Illness is Real: Surviving Invalidating Relationships and Experiences Tuesday, March 18, 1:00 - 2:00 PM Mountain Time Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness Advance registration required, see thread for times in your time zone. Event Calendar | Thread .......... Go to the next post for the section on research.
Week beginning 24th February Part 2 of 2 parts Research ME/CFS research Diagnostics Comparative Study Between Cognitive Phenotypes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Multiple Sclerosis — Aoun Sebaiti et al. "Cognitive impairments in ME/CFS patients may be similar to or even more severe and frequent than those observed in MS patients." Article | Thread BMC Infectious Diseases A comparison of genome-wide association analyses of persistent symptoms after Lyme disease, fibromyalgia, and myalgic encephalomyelitis – chronic fatigue syndrome — Hirsch et al. "In a region highly endemic to Lyme disease, we identified two PTLDS-associated loci that reached a suggestive significance (P < 5 × 10−7 ) threshold, one of which is linked with the MARC2 protein, a protein that has been related to multiple immune checkpoints. These findings were not observed in cohorts of individuals with fibromyalgia and ME/CFS." Article | Thread Medical Humanities Patients as knowledge partners in the context of complex chronic conditions — Vox Jo Hsu et al. "we recommend that rather than including patients merely for their ‘lived experience’, people living with complex chronic conditions should be systematically integrated into clinical and research teams as knowledge partners. These patients occupy unique and valuable epistemological positions, and their knowledge, from experiential to scientific, should be considered with as much openness and rigour as other forms of medical knowledge." Article | Thread Long Covid research Nature Scientific Reports Factors associated with reduction in quality of life after SARS-CoV-2 infection — Neumann et al. "the present study showed that HrQoL improved significantly during the first 2 years after SARS-CoV-2 infection and that fatigue, perceived stress and number of remaining symptoms were the main determinants of poor HrQoL, followed by muscle pain, age and joint pain." "However, it was not possible to predict whether an individual’s HrQoL would improve or worsen 1 year later based on baseline variable scores." Article | Thread Nature Scientific Reports Post-COVID-19 condition in prospective inpatient and outpatient cohorts — Hurme et al. "The prevalence of PCC, as assessed by four medical specialists, decreased from 51% at three months to 18% at 24 months. Risk factors included the severity of the acute infection and comorbidities of obstructive sleep apnea or obesity. Patients with PCC had higher serum levels of anti-SARS-CoV-2 S1 and N protein antibodies." Article | Thread JAMA Network Open COVID-19 Vaccination and Odds of Post–COVID-19 Condition Symptoms in Children Aged 5 to 17 Years — Anna R. Yousaf et al. "In this study, mRNA COVID-19 vaccination was associated with reduced odds of PCC in children. The aORs correspond to an estimated 57% and 73% reduced likelihood of 1 or more and 2 or more PCC symptoms, respectively" Article | Thread Radiology Phase-resolved Functional Lung MRI Reveals Distinct Lung Perfusion Phenotype in Children and Adolescents with Post–COVID-19 Condition — Gesa H. Pöhler et al. "Our results showed statistically significant reductions in static ventilation (regional ventilation) and perfusion in participants with PCC compared with control participants" Article | Thread Brain Communications Structural brain changes in post-COVID condition and its relationship with cognitive impairment — Pacheco-Jaime et al. "Our results evidenced cortical thickening and decreased microstructural WM integrity in PCC, as well as low performance in working memory, verbal memory, mental processing speed, verbal fluency and executive functions." Article | Thread Scandinavian Cardiovascular Journal The effect of COVID-19 on cardiovascular function and exercise tolerance in healthy middle-age and older individuals — Sophie L. Russell et al. "Hemodynamically, COVID-19 participants achieved a significantly lower peak cardiac index and stroke volume index compared to the non-COVID-19 group. On the other hand, peak oxygen extraction (arteriovenous oxygen difference) was ~9% higher in the COVID-19 group." Article | Thread Cytokine Seasonal variation in the associations between self-reported long-COVID symptoms and IL-6 signalling-related factors (particularly the rs2228145 variant of the IL-6R gene): A clinical study. — Rees et al. "(i) long-COVID sufferers appear to exhibit higher IL-6 signalling activity than healthy control individuals; (ii) number/severity of previous COVID-19 infections, and hypertension as a co-morbidity, increase risk of developing long-COVID" "(iv) within our ‘summer’ cohort bearers of the rs2228145 AA genotype appear to be at greater risk of developing long-COVID symptoms" Article | Thread Journal of Clinical Medicine Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS — Fehrer et al. "The present study shows spike protein in serum up to 31 months after infection in a subset of PCS patients with fatigue and exertional intolerance, as well as in asymptomatic individuals. Neither an association with PCS symptoms nor with the severity of symptoms in the ME/CFS subgroup was found. Moreover, no link to markers of endothelial dysfunction, inflammation, or hypercoagulation was found." Article | Thread Reviews in Medical Virology Anti-SARS-CoV-2 Antibodies in Long-COVID—Markers of Protection or Elevated Risk? A Systematic Review — Sylvia Mink et al. "The association between low anti-SARS-CoV-2-spike antibodies during acute COVID-19 and long-COVID suggests that maintaining sufficiently high antibody levels may be protective. However, the current evidence level is low and further studies with sufficient power are required" Article | Thread Frontiers in Cellular Neuroscience Direct effects of prolonged TNF-α and IL-6 exposure on neural activity in human iPSC-derived neuron-astrocyte co-cultures — Goshi et al. While we observe clear changes in neural function as a direct result of prolonged TNF-α and IL-6 exposures in human-relevant co-cultures of neurons and astrocytes, the limitation of this model is that it is without microglia, the innate immune cell of the brain." Article | Thread PLOS ONE Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study — Kelly K. O’Brien et al. "conceptualizes the experiences of disability among adults living with Long COVID including dimensions, contextual factors and triggers of disability. Features include the multi-dimensional and episodic nature of disability, uncertainty as a key dimension, contextual factors that can exacerbate or alleviate disability and triggers that initiate episodes of disability." Article | Thread Journal of General Internal Medicine Interventions for Long COVID: A Narrative Review — Ivlev et al. "Although hundreds of interventions for long COVID have been proposed, only a few have undergone rigorous evaluation, revealing weak evidence of potential benefits for a limited number." Article | Thread Arquivos de Neuro-Psiquiatria Jitter and muscle fiber conduction velocity in long COVID fatigue — João Aris Kouyoumdjian et al. "We studied 37 subjects without SARS-CoV-2 (controls) and 32 cases of SARS-CoV-2 infection, half with LC symptoms" "Fatigue/postexertional malaise was found in all cases of LC, and the electrophysiological findings did not indicate the muscle fiber or the NMJ as a relevant factor in this condition." Article | Thread Acta Materia Medica Randomized, waitlist-controlled trial of Cordyceps sinensis mycelium culture extract (Cs4) for long COVID patients in Hong Kong — Chen et al. "We assessed Cordyceps sinensis mycelium culture extract (Cs4) for alleviating long COVID symptoms. In this randomized trial 110 participants were assigned to receive Cs4 (55 participants) or were waitlisted (55 participants) for 12 weeks." Article | Thread Bioelectronic Medicine Long COVID – a critical disruption of cholinergic neurotransmission? — Leitzke et al. "This review integrates current knowledge to connect pathological findings in LC with impaired cellular cholinergic neurotransmission and proposes conclusions for a therapeutic approach" Article | Thread BMC Infectious Diseases The impact of long COVID on heart rate variability: a cross-sectional study — Qin et al. "Patients with LC under 25 years of age had a lower HRV categorized as a very-low-frequency (VLF) domain (p = 0.012)." Article | Thread Nature Cardiovascular Research The cellular and molecular cardiac tissue responses in human inflammatory cardiomyopathies after SARS-CoV-2 infection and COVID-19 vaccination — Maatz et al. "Our results highlighted an important role of IFNG expressed in lymphoid cells of post-COVID-19 heart tissue, reflected in ISG expression patterns in multiple cell types and states, and identified upregulated IL16 and IL18 expression as hallmarks of post-vaccination myocardial inflammation." Article | Thread International Journal of Molecular Sciences Exploring Heterogeneity of Fecal Microbiome in Long COVID Patients at 3 to 6 Months After Infection — Blankestijn et al. "The diversity of the fecal microbiome from patients in cluster 2 was significantly lower than in cluster 1 (p < 0.001) and showed significant separation in terms of beta diversity (p < 0.001)." "we found that patients in cluster 1 did indeed exhibit a larger proportion of butyrate-producing taxa than patients in cluster 2 (p = 0.011)." Article | Thread International Journal of Molecular Sciences Identification of Putative Serum Autoantibodies Associated with Post-Acute Sequelae of COVID-19 via Comprehensive Protein Array Analysis — Hatayama et al. "Although initial analyses revealed significant associations between autoantibodies and clinical symptoms using conventional significance thresholds (p < 0.05), these associations did not persist after Bonferroni correction for multiple comparisons" Article | Thread Nature Communications Plasma exchange therapy for the post COVID-19 condition: a phase II, double-blind, placebo-controlled, randomized trial — España-Cueto et al. "There were no diferences between groups in any of the efficacy parameters evaluated. Whereas TPE is safe, it did not lead to any discernible improvement of the PCC in this clinical trial." Article | Thread Biomedicines The Orexin System and Its Impact on the Autonomic Nervous and Cardiometabolic System in Post-Acute Sequelae of COVID-19 — Ruhrländer et al. Review. "We assume that several symptoms that occur after COVID-19 are due to an imbalance in the OX system. In particular, factors such as vascular tone, cardiac and endothelial function, lipid metabolism, and neuropeptide regulation are crucial to the pathophysiology of the OX system, as well as PASC." Article | Thread Neuroscience & Biobehavioral Reviews Cognitive reserve moderates the effect of COVID-19 on cognition: A systematic review and meta-analysis of individual participant data — Foreman et al. "This systematic review and three-level IPD meta-analysis supports the conclusion that CR acts as a protective factor against the deleterious effects of COVID-19 on cognitive function." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
