This thread has a Science for ME 'News in Brief' post for each week in March 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 3rd March 2025 Part 1 of 2 News, advocacy and articles Aotearoa New Zealand Public Health Communications Centre Aotearoa Long Covid Update – a threat that continues to demand a strong response "In addition to funding treatment and support services, this strategy must include public health and social measures to protect individuals and populations from exposure to Covid-19." Briefing | Thread Solve ME announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions). Article | Resource Guide | Thread UK ME Association A Chairman resignation statement to the ME community Neil Riley has stepped down as chairman and as a trustee of the MEA after 21 years. The MEA has thanked him for his service. The vice chairman David Allen will take over as interim chair. Article | Thread UK Physios for ME Spring Update highlights their research projects, upcoming publication of their book in German, and their involvement in physiotherapy training. Article | Thread UK The Guardian ‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten "Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened" Article | Thread Bateman Horne Center "A Common Disease Hidden in Plain Sight" A new blog post for Rare Disease Month which explains that while ME/CFS does not fit the definition of a rare disease it is an illness which often goes undiagnosed and is misunderstood. Blog Post | Thread USA - #MEAction and the Patient-Led Research Collaborative have written an open letter to HHS director Robert F. Kennedy, Jr. calling for him to reinstate the Long COVID Advisory Committee. Article | Thread Germany - A documentary called "Chronically Ill – Chronically Ignored" (German name = Chronisch Krank – Chronisch Ignoriert) was released on February 25. One of the filmmakers has severe ME/CFS and did all the work from her home. Article (German) | Thread Cochrane complaints On 5th February 2025, the Science for ME committee submitted a detailed complaint headed: "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." Cochrane failed to provide the promised formal acknowledgment, so we resubmitted the complaint on 20th February, again unacknowledged. On 3rd March, shortly after contacting Cochrane complaints again, we received a brief and unsigned response which gave an unsatisfactory explanation of part of the complaint: "Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review", claimed this did not breach their editorial policy, said the review "does not make any recommendations for or against exercise therapy", and declared the complaint closed. Complaint | Cochrane's response | 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 .......... Research news and commentary Int J Mol Sci Advances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2nd Edition The journal is inviting submissions for a special issue, with deadline of 20 May 2025. The guest editor is Dr. Vincent Lombardi. Announcement ME Research UK "Language matters – What health professionals should not say to people with ME/CFS" Summary of a recent paper which identifies problematic phrases used by clinicians that should not be used. The paper explains that both ME/CFS and long COVID have been "extensively psychologised, with patients encountering substandard medical care, disbelief and stigma". Article | Thread Trial by Error by David Tuller New Hyped-Up Lightning Process Study from New Zealand A critical analysis of a paper based on retrospective interviews of 12 participants with Long Covid who underwent LP. "It reads like a Lightning Process marketing effort cosplaying as an academic study." Article l Thread .............. Go to the next post for part 2 on research
Week beginning 3rd March 2025 Part 2 of 2 Research ME/CFS research International Journal of Molecular Sciences Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—Aetiology and Potential Treatments — Bansal et al. The authors wrote a review on cognitive dysfunction in ME/CFS and speculate that this may be caused by low-grade inflammation and altered regional cerebral blood flow. Article | Thread Biomolecules Unravelling the Connection Between Energy Metabolism and Immune Senescence/Exhaustion in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Van Campenhout et al. Review. "conflicting results across studies, methodological variability, differences in diagnostic criteria, and variations in patient cohorts underscore the need for standardized research approaches." Article | Thread Long Covid research Thesis: Ulm University Clinical, histopathological, and radiological characterization of post-acute sequelae of COVID-19 — Czech "Except for one outlier, the viral matter could not be associated with pathological processes, challenging the hypothesis that unresolved viral presence is the cause of chronic inflammation. The observations suggest that PASC represents a post-viral pathological process driven by bronchiolitis. The histological, serological, and radiological results within this PASC cohort align with the criteria of bronchiolitis following a mild COVID-19 infection." Article | Thread Thesis: Unversity of Amsterdam Towards precision medicine for (long) COVID: Perspectives on pharmacotherapy and molecular mechanisms — Baalbaki "This thesis provided novel insights into the nasal epithelium of long COVID patients, revealing upregulated SMURF1 expression in the nasal epithelium of patients with pulmonary radiological abnormalities. Additionally, it demonstrated decreased wound healing potential, barrier dysfunction and hypersensitivity of the nasal epithelium along with the involvement of the IFN-γ and IL-1β axis." Article | Thread Nature Neuroscience Microglia dysfunction, neurovascular inflammation and focal neuropathologies are linked to IL-1- and IL-6-related systemic inflammation in COVID-19 — Fekete et al. "COVID-19 is associated with IL-1- or IL-6-related proinflammatory responses at sites of viral antigens, vascular inflammation, BBB injury and microglial dysfunction across the brain, particularly in central autonomic nuclei." Article | Thread Frontiers in Immunology Long-term increase in soluble interleukin-6 receptor levels in convalescents after mild COVID-19 infection — Lokau et al. "our study shows long-lasting alterations of the IL-6 system after COVID-19 disease, which might be relevant when applying anti-IL-6 or anti-IL-6R therapy." Article | Thread Redox Report Involvement of oxidative stress in post-acute sequelae of COVID-19: clinical implications — Paola Mayara Valente Coronel et al. "findings suggest that individuals with PASC pronounced [oxidative stress], which potentially exacerbates disease complications." Article | Thread Journal of Medical Virology Genetic Landscape and Mitochondrial Metabolic Dysregulation in Patients Suffering From Severe Long COVID — Kristoffer Skaalum Hansen et al. "In this effort to establish patterns of underlying genetic predisposition for the development of long COVID, we performed comprehensive genomic analysis with a focus on genes related to mitochondrial function on 13 patients with a severe long COVID phenotype dominated by neurological and muscular symptoms/myopathy." Article | Thread Journal of Public Health Management and Practice Use and Characteristics of Clinical Coding for Post-COVID Conditions in a Retrospective US Cohort — Ford, Nicole D. et al. "Overall, 0.6% of 65 556 068 patients had a PCC diagnosis code (64.6% female; 6 in 10 had ≥1 preexisting conditions)." "The most prevalent co-documented PCC-associated incident conditions were respiratory (13.4%) and malaise and fatigue (7.8%)." Article | Thread Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen “Ultimately, you are on your own.” A qualitative analysis of barriers to health care from the perspective of patients with long COVID — Sabine Hammer et al. "The study shows that there are currently no adequate care concepts and structures for post-infectious illnesses and that activating therapies, mostly in connection with the assumption of a psychosomatic origin, lead to significant malpractice. The finding that the majority of respondents feel weakened, ashamed or harmed by their physicians is particularly dramatic. The data also provide evidence of systematic stigmatization and discrimination against those affected." Article | Thread American Journal of Physical Medicine & Rehabilitation Dropouts in exercise rehabilitation program in patients with Long COVID: A systematic review — Monte, Adão Luis et al. "Exercise rehabilitation studies for Long COVID patients show a 14% dropout rate, with the most common reasons being health-related issues and incomplete assessments." Article | Thread European Journal of Pediatrics Age differences in prevalence and symptoms of post-COVID-19 condition among children: a prospective cohort study — Wu et al. "The incidence of PCC among pediatric patients with COVID-19 was 8%, with fatigue being the most commonly reported symptom across all age groups. The associated factors for PCC varied according to age groups." Article | Thread Nature Communications Prospective cohort study of fatigue before and after SARS-CoV-2 infection in the Netherlands — Huiberts et al. "We aimed to assess fatigue during and after a SARS-CoV-2 infection by age, sex, presence of a medical risk condition, SARS-CoV-2 variant and vaccination status, accounting for pre-infection fatigue and compared with uninfected individuals." Article | Thread PLOS ONE Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID — Wasim Talib Mahdi Al Masoodi et al. "a sizable portion of the variation in the physioaffective phenome was accurately predicted by a combination of biomarkers, including GALGALR1 signaling, CRP, PGE2, and z PBT - z SpO2" Article | Thread Clinical Cardiology Tragus Nerve Stimulation Attenuates Postural Orthostatic Tachycardia Syndrome in Post COVID-19 Infection — Zhuo Wang et al. "low-level tragus stimulation significantly attenuated the increase in heart rate from supine to a 10-min stand, as well as the average and maximum heart rates after 1 month of treatment." "effects persisted during the 1-year follow-up." Article | Thread Journal of Cardiopulmonary Rehabilitation and Prevention Impaired Endothelial Function in Individuals With Post-Acute Sequelae of COVID-19: Effects of Combined Exercise Training — Choi, Tae Gu et al. "Individuals with PASC exhibited significantly lower endothelial function compared to healthy controls (4.95 ± 2.0% vs 8.00 ± 2.4%, P < .001). The exercise group showed a significant increase in endothelial function (4.73 ± 1.5% to 7.98 ± 2.4%) as opposed to the control group (5.31 ± 2.5% to 6.30 ± 2.5%) (interaction effect: P = .008), reaching levels similar to those in healthy individuals." Article | Thread Neurological Research Long-COVID from the perspective of neurologists at the outpatient clinic: A cross-sectional field study — Artemios Artemiadis et al. "In this small cross-sectional study, our aim was to delineate the symptom patterns among Long-COVID patients referred to an outpatient Neurological clinic and assess their impact on psychological, sleep, and overall well-being. Fatigue emerged as the most frequently reported symptom, followed by anxiety, myalgias, and concentration difficulties." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 10 March 2025 Part 1 of 2 Cochrane review Exercise therapy for ME/CFS The cancelled protocol for a new review An author group was appointed in 2020 to write a new protocol and review to replace the 2019 review, Exercise Therapy for CFS by Larun et al. Cochrane announced in December 2024 that they had rejected the protocol, and cancelled the new review process. Letter to the Cochrane Board Two members of the author team, Mary Dimmock and Todd Davenport, have written to Dr. Susan Phillips, Chair, Cochrane Governing Board. They express their shock at Cochrane's decision, reveal the lengthy process they went through with Cochrane to agree the protocol, with four revisions, question the grounds for Cochrane's decisions, and argue that Cochrane's rules should allow the review to be withdrawn on the grounds of harm. They conclude: "Accordingly, we call on Cochrane to immediately withdraw the Larun et al ME/CFS exercise review." Thread with letter Letter to the ME/CFS community and consultation Mary Dimmock and Todd Davenport also wrote a letter to the ME/CFS community. "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 describe the extensive work of the author group, and their shock at the announcement, adding "This risk of harm is compounded by Cochrane’s decision to revise the date of Larun et al from October 2019 (2) to December 2024". They have made the protocol public and set up a public consultation survey. Letters | Thread | Protocol | Survey | Thread The Independent Advisory Group appointed by Cochrane in 2020 to advise the author group, and led by Hilda Bastian, was also disbanded by Cochrane in December 2024 with the cancellation of the new review. Submission to The Cochrane Library Editorial Board on Policies on Outdated and Potentially Misleading Reviews "This submission addresses three policy issues that relate to these actions: 1. Retiring outdated and misleading reviews; 2. Re-issuing an unchanged review as an apparently updated one; and 3. Unaddressed criticisms." The submission provides a detailed analysis under each heading, quoting Cochrane's policies and editorial guidance. "The misleading 2024 date increases the urgency of amending the editorial note to make it clear that this review is outdated and unsuitable for clinical decision-making." Letter | Thread Comment submitted to the The Cochrane Library Review contains outdated and misleading content, and should not be used for clinical decision-making The content in the Larun review highlighted refers to the 2007 NICE guideline which supported exercise therapy for ME/CFS. "The NICE guideline was updated in 2021. [2] It no longer recommends exercise as a therapy, and stresses the possibility of harm. Recommendations in other major treatment guidelines are consistent with this, including national guidelines for the US and Germany." The comment concludes: "As the outdated content of this review is misleading about critical clinical advice and key outcomes that may influence decision-making, the editorial note should carry that same statement." Comment | Thread .................... Five years of Long Covid The five year anniversary of the start the COVID-19 pandemic has prompted several media outlets to publish stories on Long Covid. NBC News: 5 years later, long Covid is still a medical mystery: What scientists have learned US News and World Report: 5 Years Since the COVID-19 Pandemic, Millions Like Me Are Still Sick Rolling Stone: Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid More stories in this Thread ................ Other news, advocacy and articles UK ME Association New MEA feedback service allows people to share their NHS experience "Now is your chance to make a difference by sharing your experiences with NHS ME/CFS/LC specialist services." Article with link to leave a review | Thread UK ME Association The MEA writes to Ashley Dalton MP – the DHSC minister in charge of the DHSC Delivery Plan Dr Shepherd's letter asks for clarification on the publication date, and highlights the need for the plan to include specialist services for people with severe ME/CFS, NICE guideline compliant services, and more research funding. Article | Thread UK APPG Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March A representative from the Department of Health and Social Care gave an update, including reasons for delays as the new government develops its overall policy on health and care. The APPG discussed its plans and priorities. Minutes | Thread Aotearoa New Zealand Long Covid Update – a threat that continues to demand a strong response Public Health Communications Centre Aotearoa briefing. "The NZ Government response to LC has been markedly inadequate." Briefing | Thread ......... Coming events Lecture in Sydney, Australia Is Long Covid psycho-behavioural or biological? The current state of evidence - Dr David Joffe & Dr David Tuller "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial." The event takes place Tuesday March 18th in-person and online. Information/registration l Thread USA - Solve ME has set the dates for Advocacy Week, June 23 - 27. This year’s Advocacy Week is 100% virtual. All training sessions and meetings with Members of Congress will be online. Registration is required, deadline May 12. Announcement | Registration | Thread ......... Research news and commentary Webinar Building Bridges: Community strategies and research insights from the CureME team and ME/CFS study participants This first CureME webinar with Dr Jaqueline Cliff as guest speaker which took place March 10th is now available. Dr Cliff gave a presentation on Dr Sook’s recent publication “Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, explaining the hypothesis of the study and the initial results in an accessible way. Webinar l Thread United States With NIH funding, the ME/CFS Data Management and Coordinating Center is supporting an initiative to revise the common data elements (CDE) for ME/CFS. Article | Thread IACFS/ME The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) is calling on researchers to submit abstracts for their 2025 Research and Clinical Conference. The deadline for submissions is May 5, 2025, at 5 PM New York City time. Article | Thread USA - NIH A recording of the January 14 ME/CFS Advocacy Call is now available. It features a scientific presentation by Vikram Chib, PhD, and Agostina Casamento-Morales, PhD. Video | Thread Australia National Centre For Neuroimmunology And Emerging Diseases Griffith University announces study on LDN for the treatment of long COVID. Australia-wide with remote enrolment. NCNED Facebook Post | Thread Australia Emerge and Monash University Survey to understand the research priorities for those living with ME/CFS or long COVID. Survey | Thread UK Conference presentation Shame, Psychology and ME - Richard and Katharine Cheston share the abstract and slides from their presentation about Katharine's experience of getting ME/CFS at age 15, and the effects on her and her family. Slides | Thread Ologies Podcast Dr Wes Ely in conversation with Alie Ward Discusses long COVID and ME/CFS. Part 2 to follow. Link | Apple Podcasts | Thread CROI Conference on Retroviruses and Opportunistic Infections Multiple abstracts have been posted in the Long COVID forum. LC Forum | Highlighted Abstract .......... For the section on research go to the next post.
Week beginning 10 March 2025 Part 2 of 2 Research ME/CFS research Frontiers in Neuroscience Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al. "These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond efficiently to physical exertion, potentially driving exacerbation of symptoms seen in PEM." Article | Thread Viruses Prevalence of EBV, HHV6, HCMV, HAdV, SARS-CoV-2, and Autoantibodies to Type I Interferon in Sputum from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients — Hannestad et al. "We found that ME/CFS patients released EBV at a significantly higher level compared to controls (p = 0.0256). HHV6 was present in ~50% of all participants at the same level." Article | Thread MedEdPORTAL Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Diagnostic and Communication Case Study for Health Care Providers in Training — Dana J. Brimmer et al. "Viewing the educational module early in training years is a first step to broadening awareness of ME/CFS and potentially impacting future health care providers’ knowledge, attitudes, and beliefs about this and related postinfectious syndromes." Article | Thread Clinics mtDNA deletion m.8753_16566 with < 10 % heteroplasmy in muscle and isolated complex-V dysfunction misinterpreted as chronic fatigue syndrome over 21-years — Finsterer et al. Case report of a patient with ME/CFS and ATP6 gene deletion in some muscle cell mitochondria. Article | Thread Journal of Translational Medicine Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review — Weigel et al. "ME/CFS and PCC have similar, profound impacts on HRQoL that warrant access to multidisciplinary disability and social support services." Article | Thread BMC Public Health Association between pre-existing chronic conditions and severity of first SARS-CoV-2 infection symptoms among adults living in Canada: a population-based survey analysis from January 2020 to August 2022 — Cheta et al. "The aim of this study was to characterize the association between pre-existing CCs and SARS-COV-2 infection severity among the Canadian adult population" "CFS remained significant (aOR: 2.09, 95% CI: 1.23, 3.53)" Article | Thread Long Covid research Nature TGFβ links EBV to multisystem inflammatory syndrome in children — Goetzke et al. "Increased TGFβ1 levels impair immune cell interactions and T cell cytotoxicity, and limit T cell surveillance of EBV-infected B cells." Article | Thread Nature Acta Pharmacologica Sinica CircSARS-CV2-N1368 from SARS-CoV-2 impairs endothelial cell function through the upregulation of ATF7 to activate TLR4/NF-κB/ROS signaling — Wen et al. "our study showed that circSARS-CV2-N1368 sponges miR-103a-3p to activate ATF7/TLR4/ NF-κB signaling and aggravate [Reactive Oxygen Species] production and [Endothelial Cell] dysfunction" Article | Thread Preprint: BioRxiv Unveiling the Immune Landscape of COVID-19 and prolonged Long-COVID through Single-Cell RNA Sequencing — Marta Līva Spriņģe et al. "Differentially expressed genes and the involvement of the innate immune system regulation, though widely documented in severe acute COVID-19 cases, may play a part in the development or persistence of Long-COVID, as highlighted by the outcomes of this investigation." Article | Thread BMC Medicine Risk, determinants, and persistence of long-COVID in a population-based cohort study in Catalonia — Kogevinas et al. "Between 2021 and 2023, 23% of infected subjects developed long-COVID symptoms. In 56% of long-COVID cases in 2021, symptoms persisted for 2 years." Article | Thread Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR" Article | Thread Journal of Psychosomatic Research Within person predictors of physical activity and fatigue in long Covid: Findings from an ecological momentary assessment study — Burton et al. "In the day-to-day experience of Long Covid expectation and affect have little detectable effect on subsequent physical activity or fatigue." Article | Thread Revista Española de Cardiología (English Edition) Oxygen uptake kinetics during postexercise recovery are impaired in long COVID-19 patients: a cross-sectional study — Zamorano-Vargas et al. "After peak exercise, V̇O2 recovery rates were significantly impaired in long COVID-19 participants compared with controls" Article | Thread Journal Of Microbes & Their Vectors Causing Human Infections Leukocyte telomere length and telomerase activity in Long COVID patients from Rio de Janeiro, Brazil — Gonçalves dos Reis et al. "Even taking into account the small number of Long COVID patients and controls recruited for the telomerase activity assay, the finding of telomerase activity in this group of Long COVID patients was surprising." "Re-activation of telomerase is the most likely explanation for the elongation of telomeres in Long COVID patients." Article | Thread HPCDP Journal Evidence synthesis – Global prevalence of post-COVID-19 condition: a systematic review and meta-analysis of prospective evidence — Taher et al "Our analysis revealed that more than half of COVID-19 survivors experienced one or more symptoms more than a year after their initial infection. The most common symptoms were fatigue; dyspnea; memory, sleep or concentration disturbances; depression; and pain. Limitation in returning to work was the most common outcome." Article | Thread Journal of Clinical Medicine Evaluation of Long-COVID Syndrome in a Cohort of Patients with Endometriosis or Adenomyosis — Xholli et al. "The prevalence of long-COVID beyond 12 weeks was higher in cases than controls (42% vs. 12%; p < 0.001) with chest pain (p < 0.001) and ageusia (p < 0.05), forming the most representative symptoms." Article | Thread Archives of Microbiology & Immunology Post Covid Syndrome and Cognitive Dysfunction – Aetiology and Possible Treatment — Bansal CJ and Bansal AS Review article that suggests: "Reducing low grade systemic inflammation, viral reactivation and immune dysregulation has the potential to improve cognitive dysfunction in PCS." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 17th March 2025 News, advocacy and articles Sweden The Swedish government has assigned the Swedish Agency for Health and Care Services Analysis to "examine how countries around the world are working to disseminate and apply knowledge about post-covid and other conditions such as ME/CFS, PANS/PANDAS and POTS. Particular focus will be placed on vulnerable groups to ensure that care is equitable and accessible to all". Press release l Thread The diagnosis "Exhaustion Disorder (ED)" (which burnout is called in Sweden) is set to disappear in Sweden and in WHO ICD-11 in 2028. This is noteworthy as some clinicians and researchers still confuse the diagnosis with ME/CFS, and a worry is that the removal may lead to further obstacles for misdiagnosed ME patients. Thread with more information Trial by Error by David Tuller My 2018 Post on Andrew Lloyd's Memory Lapses, Revisited Tuller is in Australia and gave a talk at the Kirby Institute which also is the institutional home of Professor Andrew Lloyd whom many view "as Australia's counterpart to Professor Simon Wessely". Tuller interviewed Lloyd last time he was in Australia seven years ago, and is now looking back by reposting his blog from 2018 titled "Andrew Lloyd's Past Endorsement of PACE". Article l Thread Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial." Youtube l Thread Australia Emerge Australia Awards for Excellence in Journalism 2025 "to recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID." Announcement | Thread Hayley Gleason writing for ABC News "The pandemic’s untold fertility story" Jason Murphy writing for Crikey. "Long COVID is becoming a serious social and economic issue for Australia" Hayley Gleason (Winner) writing for ABC News "Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is 'harmless' for kids" Felicity Nelson writing for The Sick Times "My partner and I both have Long Covid. We tread the underworld together." USA - Stat News reports that the ME/CFS research program at Columbia University has been shut down due to Trump cuts. #MEAction has published an an urgent call to action for this issue. Article (paywalled) | Thread ........... Research news and commentary Medscape What Not to Say To People With Complex Chronic Illness An interview with Svetlana Blitshteyn, MD who co-authored a paper on communication with patients with Long COVID, ME/CFS and other Complex Chronic Disorders. "... lack of training, coupled with insufficient research investment in these disorders, resulted in significant shortage of clinicians and scientists knowledgeable in these disorders. With this paper, we hope to highlight the wide gap in communication and attitudes among clinicians and other healthcare practitioners toward a patient population that has been largely neglected by the medical community, but that deserves equally effective and compassionate care as patients with diabetes or heart disease." Article l Thread Nature Immunology Meeting report. Navigating the path forward for evidence-based management of long COVID - Breen et al. The US National Institute of Allergy and Infectious Diseases (NIAID) and the Foundation for the National Institutes of Health (FNIH) held a three-day workshop to assess the landscape of long COVID clinical studies and develop plans for the RECOVER-TLC clinical trials program. This paper provides a summary and overview. Article | Thread Aotearoa New Zealand University of Otago Prof. Warren Tate's donation page has been updated with information on his team's 2025 projects, focusing on the DNA methylome and genetic susceptibility. UO Donation Page | Thread ........... Research ME/CFS research International Journal of Molecular Sciences An In-Depth Exploration of the Autoantibody Immune Profile in ME/CFS Using Novel Antigen Profiling Techniques — Germain et al. "The major outcome of our analysis is the lack of significant differences in AAb levels between ME/CFS patients and controls" "we found elevated reactivity against specific EBV and HSV1 surface antigens" Article | Thread Sleep Medicine Assessing Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients before and after Treatment with Bright Light Therapy: a prospective randomized controlled crossover study — Ludwig et al. "BLT for two weeks is not effective for the treatment of fatigue in ME/CFS" "Over 45% of patients were diagnosed with postural tachycardia syndrome." Article | Thread Microorganisms Predisposing and Precipitating Factors in Epstein–Barr Virus-Caused Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Jason and Katz "The current article provides an overview of a study that included pre-illness predictors of ME/CFS development following IM in a diverse group of college students who were enrolled before the onset of IM." Article | Thread Health Expectations Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation — Monica Jane Bolton et al. Article | Thread Long Covid research Preprint: BioRxiv Systemic Multi-Omics Analysis Reveals Interferon Response Heterogeneity and Links Lipid Metabolism to Immune Alterations in Severe COVID-19 — Ronaldo Lira-Junior et al. "Persistent ISG expression and metabolic perturbations may contribute to long-term immune dysfunction, suggesting that mechanisms observed in COVID-19 could have broader implications for understanding chronic immune activation and post-viral syndromes." "Among the significantly dysregulated metabolites, lipid metabolism exhibited the most profound changes, followed by disruptions in amino acid metabolism." Article | Thread Infectious Diseases Now HLA-A*03 may confer protection against long COVID through an enhanced immune response — Pons-Fuster et al. "Lower frequency of HLA-A*03 allotype was found in Long COVID compared to non-Long COVID patients (10.7 % vs 30.5 %, p = 0.001, Pc < 0.05)" "No significant differences were observed in the frequencies of KIR genes, KIR genotypes or KIR ligands" Article | Thread BMC Neurology Asymmetrical glymphatic dysfunction in patients with long Covid associated neurocognitive impairment- correlation with BBB disruption — Chaganti et al. "We found decreased DTI-ALPS index in the left hemisphere […], but not in the right" "We observed a strong negative correlation between the DTI-ALPS index and K trans in the central white matter suggesting influx of potential toxins through an impaired BBB and decreased efflux clearance of these through an impaired glymphatic system." Article | Thread Journal of the Neurological Sciences Post-COVID microvascular dysfunction in hospitalized COVID-19 survivors is associated with acute disease severity and persistent cognitive complaints — Noa van der Knaap et al. "Our results provide additional evidence for microvascular damage in the [Normal Appearing White Matter], which may indicate subtle damage preceding [White Matter Hyperintensities] formation." Article | Thread Nature Scientific Reports Altered auditory brainstem responses are post-acute sequela of SARS-CoV-2 (PASC) — Niemczak et al. "Our findings suggest that PASC may alter the central auditory pathway and lead to slower conduction and elevated auditory neurophysiology responses at the midbrain" "this latency result predicted cognitive fatigue on two independent measures" Article | Thread Preprint: MedRxiv Wearable heart rate variability monitoring identifies autonomic dysfunction and thresholds for post-exertional malaise in Long COVID — Twan Ruijgt et al. "Our findings provide further evidence of physiological alterations during and after physical exercise in patients with long COVID that are distinct from healthy controls." Article | Thread The American Journal of the Medical Sciences Geographic disparities and emerging hotspot trends of long COVID in the United States — Gourishankar "The states with better health outcomes showed a lower frequency of long COVID." Article | Thread Health Expectations Exploring Long Covid Prevalence and Patient Uncertainty by Sociodemographic Characteristics Using GP Patient Survey Data — Mirembe Woodrow et al. "There is an unequal distribution of LC in England, with the condition being more prevalent in minoritised and disadvantaged groups. There are also high levels of uncertainty about having LC." "4.8% of respondents reported having LC, and 9.1% were unsure." Article | Thread Nature npj Digital Medicine Wearable data reveals distinct characteristics of individuals with persistent symptoms after a SARS-CoV-2 infection — Ledebur et al. Article | Thread The Lancet Regional Health – Western Pacific Health outcomes one year after Omicron infection among 12,789 adults: a community-based cross-sectional study — Hui Zhang et al. Article | Thread Other research Preprint: Research Square An interorgan neuroimmune circuit promotes visceral hypersensitivity — Brian Kim et al. "Here, we identify a mast cell-sensory neuron circuit that initiates bladder inflammation and simultaneously propagates neural hypersensitivity to the colon in a murine model of [Interstitial Cystititis / Irritable Bowel Syndrome]." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 24th March 2025 News, advocacy and articles Canada - Canadian Guidelines for Post COVID-19 Condition This set of guidelines has been updated with new recommendations. Website | Thread Cochrane appeal The Science for ME committee submitted a five part complaint to Cochrane on 5th February 2025 about their actions in December 2024. We received a brief, incomplete and unsatisfactory decision letter on 3rd March. We have this week submitted an appeal. The first part of the appeal questions the justifications given for republishing an unchanged Cochrane review with a new date and citation. The second part asks for investigation of, and responses to, the remaining unaddressed parts of the complaint. Appeal | Thread Petition update The update to the Science for ME petition 'Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review' highlights a small change to the editorial note on the review, and excellent actions by members of the IAG and writing group appointed and now sacked by Cochrane. The harmful review remains, so the campaign continues. Petition update | Thread | Discussion thread Science for ME factsheet The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members. Factsheets on other topics related to ME/CFS are in the pipeline. Factsheet | Thread ................... Research news and commentary Germany Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open. The conference will be centred on the care, research, and treatment of ME/CFS and post-COVID syndrome. It is funded and organised by the German ME/CFS Research Foundation and will take place as an online livestream broadcast from the Harnack House of the Max Planck Society in Berlin. Article | Thread ScienceNorway Almost no ME/CFS patients return to work An article about a study on ME prognosis based on wage development. Professor Karl Johan Tronstad comments: "As long as there's no effective treatment, many remain chronically ill. The study suggests that the help patients have received through the welfare and healthcare systems has had little rehabilitative effect," One of the researchers behind the study, Anne Kielland comments: "We can only acknowledge that our results were disheartening and indicated that the current policy measures for this group have not yielded significant improvements in their ability to regain income capacity," Article l Thread Trial by Error by David Tuller BMJ's Strange Response to Our Letter of Concern Regarding "Living Systematic review" of Long Covid Interventions About ongoing aftermaths after Tuller with 18 colleagues sent a letter to BMJ requesting a correction to a problematic review of LC treatments. Article l Thread USA - The current administration has proposed many cuts to the NIH and other departments. Cuts or closures may affect ME/CFS or Long Covid research. The final decision on some cuts is still pending. Science "Saying ‘pandemic is over,’ NIH starts cutting COVID-19 research" Article | Thread Scientific American "HHS’s Long COVID Office Is Closing. What Will This Mean for Future Research and Treatments?" Article | Thread The Sick Times "UPDATE: RECOVER Long COVID pathobiology grants restored" Article | Thread Fierce Healthcare 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo Article | Thread ........................... Research ME/CFS research NIHR Health Technology Assessment Recent research in myalgic encephalomyelitis/chronic fatigue syndrome: an evidence map — Todhunter-Brown et al. "Evidence relating to ME/CFS is seriously hindered by challenges and inconsistencies relating to the use of and reporting of diagnostic criteria." "Our evidence map identifies that there have been many studies in the last 5 years which do not address top priorities and that many studies are limited by the poor reporting of basic demographic information." Article | Thread Frontiers in Immunology Advocating the role of trained immunity in the pathogenesis of ME/CFS: a mini review — Humer et al. Hypothesis/review. "After an acute infection, long term changes are induced by epigenetic and metabolic changes in the hematopoietic stem cell system. The descendants from these stem cells are innate myeloid cells equipped with a more proinflammatory phenotype." Article | Thread Neural Regeneration Research A research perspective on sphingolipid metabolism and myalgic encephalomyelitis/chronic fatigue syndrome — Xiao, Junhua "Recent discoveries, such as the role of sphingolipids as a chemical signal of ME/CFS, have shed light on the significance of lipid metabolism in fatigue development. This new insight invites future research focusing on dissecting the roles of sphingolipid metabolism and its contribution to the pathophysiology of ME/CFS" Article | Thread Journal of Health Psychology Improving myalgic encephalomyelitis population sampling: Applying an online respondent-driven method to address biases in G93.3 register data — Anne Kielland et al. "the positive association between education level and diagnosis, illness features held constant, indicates a healthcare system that discriminates between patient groups based on sociodemographic background." Article | Thread Cureus Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study — Gürsan Güneş Uygun et al. "One possible reason for the low awareness of the link between fatigue and orthostatic intolerance is the difficulty in accessing evaluation methods. Participants who do not have access to these tests in clinical practice may fail to recognize the relationship between fatigue and dysautonomic disorders." Article | Thread Journal of Clinical Psychology in Medical Settings Cognitive Impairments in Two Samples of Individuals with ME/CFS and Long COVID: A Comparative Analysis — Sirotiak et al. Article | Thread ResearchGate Mark Vink and Friso Vink-Niese have published a critique of the review on Long Covid interventions by Paul Garner and colleagues. Problems with the review include "relying on subjective outcomes in non‐blinded studies with poorly chosen control groups, selection, volunteer and self referral bias, response shift and allegiance bias, small study effect bias, selective reporting of the objective outcomes." Article | Thread Long Covid research Frontiers in Neurology Changes in cerebrovascular reactivity within functional networks in older adults with long-COVID — Pommy et al. "Potentially, these findings reflect the neuroinflammatory and vascular changes previously observed as a driving mechanism of long-COVID in other studies. Alternatively, these findings could reflect a premorbid group difference that places individuals at heightened risk for developing long-COVID." Article | Thread Nature Communications Whole-body visualization of SARS-CoV-2 biodistribution in vivo by immunoPET imaging in non-human primates — Detrille et al. "we were able to directly detect SARS-CoV-2 antigens in vivo using a non-invasive imaging technique." "provides a powerful innovative tool to study COVID-19 pathophysiology and viral spreading. It can also provide insights for long-COVID studies by studying antigen persistence in key organs such as brain and lungs" Article | Thread Infection Impact of treatment of COVID-19 with sotrovimab on post-acute sequelae of COVID-19 (PASC): an analysis of National COVID Cohort Collaborative (N3C) data — Drysdale et al. "In patients at high risk for severe COVID-19, the benefits of early sotrovimab treatment may extend beyond the acute phase of COVID-19 and contribute to the prevention of PASC symptoms." Article | Thread BMC Infectious Diseases Early biomarkers in hospitalized patients as predictors of post-acute sequelae of SARS-CoV-2 infection: a one-year cohort study — Nair et al. "A cohort of 120 adult patients, including 50 intensive care and 70 non-intensive care patients, was followed up at two weeks, six weeks, and one-year post-discharge using structured questionnaires. The study integrated comorbidities and laboratory biomarkers to forecast the risk for PASC." Article | Thread Nature Scientific Reports Impact of COVID-19 on heart rate variability in post-COVID individuals compared to a control group — Santos-de-Araújo et al. "we confirmed our hypothesis that non-hospitalized individuals who had COVID-19 present a decrease in HRV with a predominance of the sympathetic nervous system" Article | Thread Neurology International Brain Structural Abnormalities in Patients with Post-COVID-19 Headache — Széphelyi et al. Retrospective 30 vs 30 MRI case/control study. "One of our most noteworthy findings is that white matter lesions were identified in 50% of the post-COVID-19 group, compared to 20% in the control group." Article | Thread Journal of Psychosomatic Research Different patterns of persistent somatic symptoms after COVID-19 reported by the Dutch media and the general population — Ballering et al. "heightened exposure to media coverage of a phenomenon amplifies one’s risk perception about it […] it has been argued that nocebo effects are a potentially pivotal driver for post COVID-19 condition." "our findings do not support this." Article | Thread Brain, Behavior, & Immunity - Health Predictors of fatigue progression in long COVID among young people — Brodwall et al. Article | Thread ImmunoInformatics Molecular mimicry impact of the COVID-19 pandemic: Sequence homology between SARS-CoV-2 and autoimmune diseases epitopes — Pablo Maldonado-Catala et al. Article | Thread United European Gastroenterology Journal Long-Term Impact of COVID-19 on Disorders of Gut–Brain Interaction: Incidence, Symptom Burden, and Psychological Comorbidities — Giovanni Marasco et al. "patients with post-COVID-19 DGBI exhibited consistent symptom deterioration across multiple gastrointestinal domains" "Patients with post-COVID-19 DGBI experience progressive gastrointestinal symptom deterioration and persistent psychological distress" Article | Thread ............ S4ME social media: Forum, Mastodon and Bluesky
