This thread has a Science for ME 'News in Brief' post for each week in April 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 31st March 2025 News, advocacy and articles USA - #MEAction announced that this year's Millions Missing campaign is "largely focused on the seismic cuts being made to research funding, healthcare, and disability services in the U.S." Register now for one of the two planning meetings scheduled for Thursday, April 10. Plans for the UK campaign coming soon. Announcement | Thread Salon "Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again" An overview of the latest budget cuts in the USA and how they impact Long Covid and ME/CFS research. Article | Thread UK Parliament The publication date for the governement's delivery plan for ME/CFS has been moved to the end of June 2025. Announcement | Thread UK ME Association DWP Replies to Dr Charles Shepherd’s Letter Regarding Welfare Cuts. Dr Shepherd's letter raised concerns that people with fluctuation conditions are not properly assessed. The reply links the government consultation open for feedback. Consultation survey | Article | Thread The Sick Times An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases "On behalf of the Very Severe, we the Severe are appealing to you, the Mild and Moderate, to put pressure on our ME and Long COVID organizations to dedicate at least 25% of their annual attention (including budget and staff) to our plight." Article | Thread ANZMES Petition against benefit cuts for hospitalised patients The petition calls on the New Zealand Government to urgently review and amend the policy that reduces benefits for individuals hospitalised for over 13 weeks. Petition | Thread ............ Research news and commentary UK ME Association Press Release: Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid "Original funding (£440,000) for the clinical trial of LDN came from the Canadian Institutes of Health Research. Dr Nacul is completing the study at the B.C. Women’s Health Research Institute. The ME Association has invested £132,000 to support future recruitment and follow-up of participants." Article | Thread Trial by Error by David Tuller New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases A walkthrough of the paper "'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses" - Sloan et al. 80% of those who had received a psychosomatic misdiagnoses reported that it had damaged their self worth. Tuller comments that the iatrogenic harm of the MUS approach is incalculable. Article l Thread Lancet Letter Exchange on Claimed Success of "Persistent Physical Symptoms" Trial Despite Clinically Insignificant Findings David Tuller and colleague Joan Crawford wrote a letter to the Lancet raising criticism of a paper by Burton et al on psycho-behavioral intervention for "persistent physical symptoms". Tuller/Crawford: "Patients desire resolution of symptoms and recovery of functions. The trial did not achieve this result. Post-intervention, participants continue to have an impaired quality of life and poor experiences of health care." Burton et al reply: "Encouraging health professionals to proclaim “we do not know what is causing symptoms” in response to persistent physical symptoms, as Crawford and Tuller recommend, underestimates the explanatory power of recent symptom science and is likely to perpetuate the frustration and hopelessness of both clinicians and patients, which is all too common in this field." Article l Thread ........... Coming Events Bateman Horne Center - Free Online Support Groups Tuesday, April 8, 1:00 - 2:00 PM Mountain Time Topic: Getting Unstuck in Stuck Places Tuesday, April 15, 1:00 - 2:00 PM Mountain Time Topic: Re-introducing Peace, Happiness and Joy to the Illness Experience Advance registration required, see thread for times in your time zone. Event Calendar | Thread ........... Research ME/CFS research The Lancet Forum members Joan Crawford and David Tuller wrote a response to a recent trial of a consultative intervention for persistent physical symptoms, published in the Lancet. Crawford & Tuller highlight that the effect size found was lower than the minimal clinically important difference and that it likely was the result of bias. Article | Thread Life The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS — Vink and Partyka-Vink "An article by White et al., which is written by 51 researchers, claims that there are eight anomalies in the review process and the interpretation of the evidence by NICE. In this article, we reviewed the evidence they used to support their claims." "Our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and they highlight the absence of evidence for the claims that are made." Article | Thread BMJ Open Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK — Maedeh Mansoubi et al. "Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID)." Article | Thread Preprints.org A Systems-Based Hypothesis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Phosphatidylcholine Deficiency, Insulin Signaling and Noradrenergic Neuron Dysregulation — Tamara Carnac "We explore genetic, metabolic, and inflammatory factors that contribute to phosphatidylcholine deficiency and propose a multi-component model of ME/CFS, highlighting the interplay between phosphatidylcholine metabolism, liver dysfunction, neuronal function and inflammatory signaling." Article | Thread Preprint: BioRxiv Identification of genetic and non-genetic modifiers of genomic imprinting through whole genome screening in humans — Francesco Cecere et al. "we observed a negative correlation between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 20 NNAT:TSS CpGs" Article | Thread Long Covid research Nature Communications Long COVID after SARS-CoV-2 during pregnancy in the United States — Zang et al. "we observed a relatively lower risk of Long COVID in pregnant individuals compared to SARS-CoV-2-infected non-pregnant females who were exactly matched on region, age, infection time, acute severity, and baseline comorbidities." Article | Thread The Lancet Infectious Diseases Nirmatrelvir–ritonavir versus placebo–ritonavir in individuals with long COVID in the USA (PAX LC): a double-blind, randomised, placebo-controlled, phase 2, decentralised trial — Mitsuaki Sawano et al. "Nirmatrelvir–ritonavir administered for 15 days did not significantly improve health outcomes in participants with long COVID compared with placebo–ritonavir at day 28." Article | Thread Preprint: MedRxiv Reinfection with SARS-CoV-2 in the Omicron Era is Associated with Increased Risk of Post-Acute Sequelae of SARS-CoV-2 Infection: A RECOVER-EHR Cohort Study — Bingyu Zhang et al. "In this study involving 407,300 children and adolescents with a first SARS-CoV-2 infection and 58,417 with a documented reinfection, we observed an increased risk of PASC across multiple organ systems, reinforcing concerns about the long-term consequences of reinfection." Article | Thread Journal of Adolescent Health Characterisation and Management of Children and Young People Referred to a Paediatric Tertiary Post-COVID Service — Anne-Lise Goddings et al. "Only 25% patients referred to the Pan-London Post-COVID service were attending school at least half of the week, emphasising the functional impact of PCC on this cohort at a critical point in their educational journey." Article | Thread EJNMMI Research Reorganization of brain connectivity in post-COVID condition: a 18F-FDG PET study — Verger et al. "study confirms that the hypometabolic pattern in PCC patients can persist at least 9 months after infection, with modifications of metabolic connectivity within this network." "These metabolic connectivity reorganizations could suggest an attempt at functional adaptation of the brain to metabolic impairment, even if connectivity might be less efficient." Article | Thread Current Issues in Molecular Biology B Cell Dynamics and Transitional B Cells in Long COVID — Korobova et al. "We noted that long COVID patients had a statistically significant higher percentage of naive mature cells (CD27−CD38+), whereas transitional cells (CD27−CD38+++) and double-negative (DN, CD27−CD38−) cells were lower when compared to healthy donors." Article | Thread Information, Communication & Society ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID — Sazana Jayadeva and Deborah Lupton "It is notable that most of our participants had not used self-tracking wearables or apps prior to developing Long COVID. Indeed, some had described themselves as having been opposed to the use of such devices. However, in the absence of adequate medical support, and despite some drawbacks and frustrations, these wearables and apps had become key tools for navigating Long COVID." Article | Thread Journal of Hypertension Long-term effects of SARS-CoV-2 infection on blood vessels and blood pressure – LOCHINVAR — Lip, Stefanie et al. "Persistent vascular dysfunction and BP increase post-COVID-19 underscore the need for further studies on the long-term risk of hypertension and cardiovascular disease." Article | Thread Preprint: MedRxiv Dysautonomia in long COVID is prevalent and could explain the frequency of symptoms — Leonardo Tamariz et al. Article | Thread ............ S4ME social media: Forum, Mastodon, Bluesky
Week beginning 7th April 2025 Part 1 of 2 News, advocacy and articles Denmark The Danish Health Authority has announced that it will strengthen its efforts for ME/CFS patients. This will be based on two recent knowledge reports on the situation for ME patients in Denmark. The health policy magazine Sundhedspolitisk Tidsskrift has written an article detailing the very difficult situation for ME patients in Denmark and asks how the work can be built on reports which are lacking concrete suggestions for the way forward. Article l Thread Iceland Professor Ola D. Saugstad has given a talk in Iceland. First he gives a general introduction about ME and medical research into the illness. In the second half he talks about oxygenation of newborn babies. The talk is in English (apart from a few minutes of introduction in Icelandic) and has been uploaded on YouTube by the Icelandic ME Association ME félag Íslands. YouTube l Thread Hungary Interdisciplinary consensus statement about the diagnosis and treatment of [CFS]/myalgic encephalomyelopathy, 2025, Simonyi et al An article in Hungarian that reviews international literature and guidelines on ME/CFS to inform Hungarian health professionals. However, translation of the treatment section shows it misrepresents the NICE guideline as including gradually increasing activity to treat deconditioning. The 2021 NICE guideline says the opposite, that ME/CFS is not due to deconditioning, and it specifically recommends against graded exercise therapy. Article | Thread Trial by Error by David Tuller Suzanne O´Sullivan's "Psychosomatic" Mis-Diagnoses A critical look at the responses to the book "The Age of Diagnosis: How Our Obsession with Medical Labels Is Making Us Sicker" by O´Sullivan which incorporates Long Covid as a psychosomatic illness. Tuller notices that the book coincides with current labour shortages due to illness, often due to LC, and the push for reducing benefits in response. "O’Sullivan’s framework seems likely to provide perceived confirmation of the arguments for cutting social welfare payments as well as political cover for those seeking to promote that strategy." Article l Thread BJGP - British Journal of General Practice Suzanne O'Sullivan's new book 'The Age of Diagnosis' and her curious characterisation of Long Covid as a psychosomatic condition GP and Long Covid sufferer Elke Hausmann has written a book review where she shows how and why O'Sullivan's psychosomatic explanatory model of Long Covid is both wrong and damaging. Article l Thread Could GP's understanding and management of Long Covid and ME be improved by conceptualising those conditions in terms of 'premature frailty'? Written by Elke Hausmann. "What I am proposing is a different way of looking at Long Covid and ME that might engender a better understanding and more compassion in GPs for patients living with these devastating and life changing conditions." Article l Thread Aotearoa New Zealand A small step in New Zealand Writing from Norway, patient/advocate and former HSEQ CEO Nina E. Steinkopf engaged with the Royal New Zealand College of General Practitioners, who investigated and subsequently removed endorsement of a Lightning Process article previously published in NZ Doctor. Article | Thread Germany The football club St Pauli, a historically leftist and activist club, had people flying ME/CFS banners last match in the stadium. Article | Thread Nature "Long COVID activists fought Trump team’s research cuts and won ― for now" Millions of dollars in grants have been restored but activists and researchers worry about future cuts. Article | Thread ........... Fundraising Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards. Crowdfunding l Thread ............. Coming events UK Dr Nigel Speight, paediatrician who specialises in children with ME/CFS, will give a free online talk about ME/CFS hosted by M.E. Support Northern Ireland on Thursday 17th April at 7pm. All are welcome, especially parents. Registration | Thread Conference in Norway ME/CFS and Long Covid - Digging Deeper - 7-8 May Large conference in Stavanger, Norway with following speakers: Carmen Scheibenbogen, Karl Johan Tronstad, Rod Wüst, David Systrom, Trude Schei, Kristian Sommerfelt, Brian Hughes, David Putrino, Anniken Sommerfelt, Michelle Bull, Øystein Fluge and Ola D. Saugstad (host). 7th May is for healthcare workers and the evening conference 8th May is open to everyone. The event is organised by the Norwegian ME Association - Rogaland. Website l Thread Solve ME Webinar Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID Thursday, April 29, 3 pm Pacific / 6 pm Eastern Website | Thread The 2025 IACFS/ME Conference, scheduled for October 22-25, has been changed to a virtual format. The submission deadline for abstract/workshop proposals has been extended to May 19. Announcement | Thread USA - #MEAction is planning a protest in Washington, DC, on Monday, May 12 for Millions Missing 2025. Anyone who wants to attend that protest, or who needs help to plan a local event, should contact #MEAction using the forms on their website. The site also has links to a US toolkit and Global toolkit. Millions Missing 2025 | Thread ........... Continued in the next post.
Week beginning 7th April 2025 Part 2 of 2 Research ME/CFS research Life The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS — Vink and Partyka-Vink "our analysis shows that the arguments that are used to claim that there are eight anomalies in the review process and the interpretation of the evidence by NICE are anomalous and highlight the absence of evidence for the claims that are made." Article | Thread European Journal of Applied Physiology Physical function and psychosocial outcomes after a 6-month self-paced aquatic exercise program for individuals with myalgic encephalomyelitis/chronic fatigue syndrome — Broadbent et al. "Self-paced, low–moderate-intensity aquatic exercise improved walk distance, lower limb strength, fatigue, depression and peak expiratory flow without worsening ME/CFS symptoms." Article | Thread BMJ Open Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK — Maedeh Mansoubi et al. "Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID)." Article | Thread Prävention und Gesundheitsförderung Lassen sich mit einem einfachen, kurzen Screening-Test ME/CFS-Erkrankte (myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom) von Patient:innen mit einer ME/CFS-ähnlichen Symptomatik unterscheiden? — Habermann-Horstmeier and Horstmeier "The aim of this study was to determine whether it is possible to distinguish between patients with ME/CFS and patients with ME/CFS-like symptoms among patients who are convinced that they have ME/CFS." Article | Thread Expert Opinion on Biological Therapy Autoantibody targeting therapies in post COVID syndrome and myalgic encephalomyelitis/chronic fatigue syndrome — Felix Wohlrab et al. Article | Thread Long Covid research Nature Communications Medicine Identifying commonalities and differences between EHR representations of PASC and ME/CFS in the RECOVER EHR cohort — Powers et al. "While dyspnea is the single strongest predictor in the PASC CP and fatigue in the ME/CFS CP, both are most-predictive conditions in both CPs. The other most-predictive condition shared by both CPs is “finding related to attentiveness,” which could more generally be referred to as a cognitive impairment." Article | Thread Journal of Medical Virology Proteomic Analysis of 442 Clinical Plasma Samples From Individuals With Symptom Records Revealed Subtypes of Convalescent Patients Who Had COVID-19 — Jiangfeng Liu et al. "plasma protein expression levels showed that C1QA, C1QB, C2, CFH, CFHR1, and F10, which regulate the complement system and coagulation, remained highly expressed even at the 12‐month follow‐up compared with their levels in healthy individuals." Article | Thread Nature Communications A novel PLpro inhibitor improves outcomes in a pre-clinical model of long COVID — M. Bader et al. "our mouse model recapitulates long-term pathologies matching closely those seen in PASC patients. Our lead compound offers protection against a range of PASC symptoms in this model, prevents lung pathology and reduces brain dysfunction." Article | Thread Journal of Cardiovascular Magnetic Resonance Abnormal Coronary Vascular Response in Patients with Long COVID Syndrome – a Case-Control Study Using Oxygenation-Sensitive Cardiovascular Magnetic Resonance — Weberling et al. "This pilot study is the first to show a blunted hemodynamic and myocardial oxygenation response to vasoactive breathing maneuvers during Oxygenation-sensitive CMR in long COVID patients. This simple, non-invasive test may be the first to objectify complaints of affected patients and indicates evidence for the crucial role of the endothelium in the pathophysiology of long COVID." Article | Thread Health Expectations Rethinking ‘Recovery’: A Comparative Qualitative Analysis of Experiences of Intensive Care With COVID and Long Covid in the United Kingdom — Alice MacLean et al. "Key differences in ‘worlds of illness’ stemmed from the fact that ICU participants' hospitalisation conferred them status as legitimate patients in ‘medically clear and understandable ways’ whereas LC participants' ‘patienthood’ was neither evidenced nor authenticated in the same way." Article | Thread The Lancet Infectious Diseases Rates of infection with other pathogens after a positive COVID-19 test versus a negative test in US veterans (November, 2021, to December, 2023): a retrospective cohort study — Miao Cai et al. "the results from this analysis suggest that among people who were tested for COVID-19, those with a positive test experienced an increased rate of diagnosis of infectious illnesses in the 12 months following" Article | Thread The Lancet Regional Health – Europe Health outcomes up to 3 years and post-exertional malaise in patients after hospitalization for COVID-19: a multicentre prospective cohort study (CO-FLOW) — Julia C. Berentschot et al. "In this multicentre prospective cohort study with follow-up up to 3 years after hospitalization for COVID-19, the findings showed that patient experienced persisting and even worsening of several health issues up to 3 years. Specifically, while some health outcomes improved over time, self-reported fatigue and cognitive problems worsened between the second and third year." Article | Thread Cardiopulmonary Physical Therapy Journal Wearable Devices Enable Long COVID Patients to Decrease Symptom Severity: A Case Series From Pilot User Testing — Goosen, Andrea et al. "Based on experiences in the Long COVID community, we hypothesized that wearable devices can help individuals pace and reduce their Long COVID symptom severity." Article | Thread PLOS Digital Health Pediatric Long COVID Subphenotypes: An EHR-based study from the RECOVER program — Vitaly Lorman et al. "our findings suggest that the headache, fatigue, and respiratory/cardiac subphenotypes of Long COVID are characterized by presentations that appear to be distinct and will thus be easier to detect in clinical care and population studies." Article | Thread BMC Public Health Post COVID-19 among young adults– prevalence and associations with general health, stress, and lifestyle factors — Ekström et al. "Almost 4% of young adults with previous self-reported COVID-19 had ongoing symptoms of PCC three years after the onset of the pandemic." Article | Thread BMC Health Services Research The impact of long COVID on UK healthcare workers and their workplace: a qualitative study of healthcare workers with long COVID, their families, colleagues and managers — Al-Oraibi et al. "We found that long COVID greatly impacted the physical health, home life, and mental well-being of HCWs, with varying levels of resilience and support shaping their ability to cope." " has led to significant emotional challenges for HCWs, with feelings of guilt and stigma playing a major role" Article | Thread Culture, Medicine, and Psychiatry Stigma, Chronicity and Complexity of Living with Long Covid in Kenya — Bosire et al. Article | Thread Nature Communications Medicine A nationwide study of risk factors for long COVID and its economic and mental health consequences in the United States — Kim "Overall, an estimated 24 million working-aged adults with long COVID had been or may still be at risk of adverse socioeconomic and mental health outcomes. The lost earnings due to long COVID among working-aged adults are estimated to total $211 billion in 2022 and $218 billion in 2023." Article | Thread Journal of Thrombosis and Thrombolysis The use of oral anticoagulation at the time of acute COVID-19 infection and subsequent development of long-COVID/post-acute sequelae of SARS-CoV-2 infection — Frost et al. "We found no evidence that prevalent OAC at the time of acute COVID-19 infection was associated with reduced risk of LC/PASC." Article | Thread Infection Possible link between steatotic liver diseases, severe COVID-19 and cognitive impairment in post-COVID-19 syndrome — Reuken et al. "PCS patients with and without SLD did not differ with respect to fatigue and functional status ratings" Article | Thread Fatigue: Biomedicine, Health & Behavior Caffeine against persistent fatigue in long-COVID: a randomized clinical trial — Liziane Rosa Cardoso et al. Article | Thread ............ S4ME social media: Forum, Mastodon, Bluesky
Week beginning 14th April 2025 News, advocacy and articles Trial by Error by David Tuller My Visits with Alem Matthees, 2025 A very touching account of Tuller's visit with Alem Matthees and his family in Australia. Thanks to Alem Matthees' hard work, unpublished data from the PACE trial finally got released, leading to its definitive rebuttal. Matthees health deteriorated from this, and he has since suffered from very severe ME. Tuller brought grateful greetings to Matthees from the patient community. Article l Thread New Zealand GP Group Disavows Lightning Process Endorsement, BBC's Con or Cure Takes Skeptical Look at LP Thanks to patient advocate Nina E. Steinkopf's efforts, New Zealand's GP association has clearly stated that they follow the 2021 NICE guidelines and thus do not endorse the Lightning Process. Tuller also writes about a segment from the BBC programme Con or Cure where Oonagh Cousins from #ThereForME speaks about when LP-founder Phil Parker tried to recruit her, which led to her advising patients to be wary of such mind-body approaches. Article l Thread Germany A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer, in collaboration with Sozialhummel, plans to build barrier-free apartments that are optimally tailored to the needs of people with severe ME/CFS. Interested parties can join a waiting list. Article | Thread Mike's European Marathons Northern Ireland Mike Harley is running marathon races in European countries while raising awareness and funds for medical research into ME. Ahead of the Belfast Marathon he has interviewed two Irish ME patients Richard and Aileen about their stories and the situation for ME patients in Northern Ireland. Article l Thread Workshop on Post-COVID ethics In February, Radboud Center of Philosophy and Society and Post-COVID Network Netherlands hosted a workshop on Post viral Ethics. Video recordings and short summaries are now available. Themes from the workshop: What is Long Covid?, The psychologization of post viral illness, The invisibility of patients, Epistemic injustice and the denial of patient expertise, Children and post viral illness, Post viral illnesses in the broader context of climate change and planetary health. Website l Thread USA TedX talk I Am One of the Millions Missing "In this emotional talk, author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option." Video (14 minutes) | Thread USA Psychology Today I'm the Mom, But No One Listened to Me Becky Diamond describes repeated experiences of teachers and clinicians not believing her child was sick, including with Long Covid. Article | Thread USA Spectrum News Leading long COVID researcher fears it could become a national epidemic - Eric Feldman “They go to the doctor, they test and they get told good news, everything tested normal, which is not good news for someone who is feeling as terrible as most people with long COVID feel" - Dr. David Putrino Article | Thread Big Issue I'm 18 and bed bound with long Covid. This is what it's like to be held hostage by your own body In this great opinion piece, 18 year old Emily-May Stephenson tells about living with multiple chronic health conditions, including ME/CFS and of how we are all susceptible to poor health. "The most vulnerable in our society have already been subjected to so much and still choose to press forward. That is a type of courage that should be praised and not preyed upon". Article l Thread ............ Fundraising Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards. Crowdfunding l Thread ............ Coming events - see last week's news for details of these events Solve ME Webinar Thursday, April 29 Website | Thread USA - #MEAction May 12 for Millions Missing protest. Millions Missing 2025 | Thread Conference in Norway ME/CFS and Long Covid - Digging Deeper - 7-8 May Website l Thread IACFS/ME Conference October 22-25 virtual conference. Announcement | Thread ............. Research ME/CFS research Preprint: MedRxiv Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis — Sai Zhang et al. "M9 genes were associated with proteasome function and particularly degradation of ubiquitinated proteins that are targeted for turnover, and M20 genes were linked to synaptic function" Article | Thread Preprint: MedRxiv Toward a Disease Module for ME/CFS: A Network-Based Gene Prioritization — Paolo Maccallini "Enrichment analysis identified significant overlaps with sphingolipid metabolism and signaling, and energy-related pathways. Heme degradation, TP53-regulated metabolic genes, and thermogenesis were also identified as possibly contributing to the pathogenesis of ME/CFS." Article | Thread Frontiers in Neuroscience This journal Frontiers in Neuroscience has a new topic titled: "Exploring Chronic Fatigue: Neural Correlates, Mechanisms, and Therapeutic Strategies". The manuscript submission deadline is 30 May 2025. Article | Thread Long Covid research Frontiers in Immunology SARS-CoV-2 post-acute sequelae linked to inflammation via extracellular vesicles — Bachiller et al. "Despite the lack of differences in plasma cytokines, we detected higher concentrations of IL-18 and MIP1b as well as CD81 in EVs from COVID-19 participants, suggesting that they may play a fundamental role in the altered immune response 15 months after the acute infection." Article | Thread GeroScience Associations of epigenetic aging and COVID- 19: A 3-year longitudinal study — Farkas et al. "COVID- 19 infection significantly increased the speed of aging assessed by DNAmGrimAge, DNAmGrimAge2, and DNAmFitAge compared to non-infected subjects during the 3 years." Article | Thread Journal of Medical Virology Proteomic Analysis of 442 Clinical Plasma Samples From Individuals With Symptom Records Revealed Subtypes of Convalescent Patients Who Had COVID-19 — Jiangfeng Liu et al. "our study identified that [complement proteins] remain highly expressed 12 months after SARS‐CoV2 infection" Article | Thread BMJ Open Ten sessions of hyperbaric oxygen versus sham treatment in patients with long covid (HOT-LoCO): a randomised, placebo-controlled, double-blind, phase II trial — Anders Kjellberg et al. "10 HBOT sessions did not show more short-term benefits than placebo for long covid patients." Article | Thread BMC Public Health Post COVID-19 among young adults– prevalence and associations with general health, stress, and lifestyle factors — Ekström et al. "Almost 4% of young adults with previous self-reported COVID-19 had ongoing symptoms of PCC three years after the onset of the pandemic." Article | Thread BMC Health Services Research The impact of long COVID on UK healthcare workers and their workplace: a qualitative study of healthcare workers with long COVID, their families, colleagues and managers — Al-Oraibi et al. "HCWs with long COVID experienced profound feelings of guilt due to their prolonged absence, reduced capacity to work, and the additional burden placed on colleagues. Many felt a strong sense of personal responsibility to continue working despite debilitating symptoms." Article | Thread Nature Communications Medicine A nationwide study of risk factors for long COVID and its economic and mental health consequences in the United States — Kim "Overall, an estimated 24 million working-aged adults with long COVID had been or may still be at risk of adverse socioeconomic and mental health outcomes. The lost earnings due to long COVID among working-aged adults are estimated to total $211 billion in 2022 and $218 billion in 2023." Article | Thread BMJ Global Health Long COVID prevalence and risk factors in adults residing in middle- and high-income countries: secondary analysis of the multinational Anti-Coronavirus Therapies (ACT) trials — "Symptoms of long COVID are reported in a quarter of cases of symptomatic COVID-19 in this study and were significantly more prevalent in participants from countries with lower income status and in patients of Arab/North African ethnicity." Article | Thread Health Expectations ‘We Don't Have to Prove to People How We're Feeling’: Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre — Nandini Sarma et al. Article | Thread ............ S4ME social media: Forum, Mastodon, Bluesky
Week beginning 21st April 2025 News, advocacy and articles USA - HHS/CDC Internal budget document reveals extent of Trump’s proposed health cuts A Washington Post article reveals large cuts are planned for the HHS budget. Jaime Seltzer from #MEAction explains more details about these cuts (Bluesky thread) including how they would impact ME/CFS research and other programs. In response, Solve ME/CFS has set up a tool for folks to contact their members of congress. Article (no paywall) | Thread USA Docology America's Greatest Viral Threat: Ignorance In this episode Dr. Howard Zucker interviews Dr. Ian Lipkin. Includes some discussion of ME/CFS research and the Trump administration funding cuts for Columbia's ME/CFS Center. Video | Thread UK Parliament Joint ME and Long Covid All Party Parliamentary Group meeting - Wednesday 14 May, from 5pm - 7pm. Speakers will include Professors Danny Altmann, David Strain and Chris Ponting and Dr Binita Kane. There is a template letter for people in the UK to use to invite their MP to the meeting. AfME article | APPG template letter | Thread UK - #MEAction SOS: Save our Science #MEAction UK urges people to join their campaign on ME Awareness Day. "Remember to let your MP know what you are doing and why funding research into ME is so important to you and your family." Article | Thread Norway Board member of the Norwegian Covid Association Marit Stafseth has written a thorough opinion piece in Forskersonen where she's criticising the psychosomatic approach to Long Covid from the Oslo Chronic Fatigue Network. It brings us nowhere and enough is enough. Chairman of the network professor Silje Reme has written a response where she disagrees and claims their model of "predictive processing" brings new understanding of persistent symptoms. Stafseth l Reme l Thread UK The Times ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care "A study found that 404,000 people are living with the illness, two thirds more than previously thought, with a 50-fold variation in diagnosis rates." (see the first item in the research section below). The news is also covered in the Guardian. Times | Guardian | Thread ............ Fundraising Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards. Crowdfunding l Thread ............ Coming events Invest in ME Research Conference On 30th May, the 17th Invest in ME Research International ME Conference will be organised by the UK charity Invest in ME. It will allow collaboration and networking between European and international researchers, clinicians, early career researchers, and European ME patient groups and charities. Article | Thread ............. Research news and commentary UK A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform "A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS." The proposal is for a government funded group of research hubs with a single coordinating centre. Proposal | Thread with links to related documents MERUK article | Thread Signatories are invited for an open letter to the UK government supporting the proposal. Letter | Thread Trial by Error by David Tuller Null Results in Physiotherapy Trial for Functional Motor Disorder A critical walkthrough of a paper from 2024 on physiotherapy for "functional motor disorder" by Nielsen, Stone et al. "The bottom line, per the SF-36 data, is that the patients in this trial remained extremely debilitated, whether they received the Physio4FMD intervention or physiotherapy at a local NHS service. That’s the take-home message here." Article l Thread ............... Research ME/CFS research BMC Public Health Unequal access to diagnosis of myalgic encephalomyelitis in England — Samms and Ponting "Across England, ME/CFS diagnosis varies 50-fold, with considerable variation by gender, age, ethnicity, and location" "Lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively" "his improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS." Article | Thread Frontiers in Neurology Post-exertional malaise in Long COVID: subjective reporting versus objective assessment — Stussman et al. "Self-report of PEM is common in Long COVID. However, observable PEM following an exercise stressor was not frequent in this small cohort. When present, PEM descriptions during [qualitative interviews] were less severe in Long COVID than in ME/ CFS." Article | Thread Disability & Society Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome — Joanne Hunt "A recurring motif in the biopolitical governing of disability/impairment is the relegation of already marginalised knowledges to the lowest form of evidence, and/or co-option of those knowledges in ways that serve elite interests." Article | Thread Psychology, Health & Medicine “I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis — A. Tenhave et al. "Participants also described how harmful interactions form barriers to accessing and engaging with healthcare. Such barriers commonly occurred due to disbelief, that is, being told one’s symptoms did not exist as they could not be corroborated by medical tests." Article | Thread Long Covid research Preprint: MedRxiv Persistent immune dysregulation and metabolic alterations following SARS-CoV-2 infection — Silvia Lucena Lage et al. "Post-acute metabolic derangements included markedly decreased [tryptophan] levels, high levels of pro-inflammatory lipid mediators and epigenetic changes in cellular metabolism-related genes." Article | Thread Lancet: eClinicalMedicine Real-world effectiveness and causal mediation study of BNT162b2 on long COVID risks in children and adolescents — Qiong Wu et al. "this study of nationally representative pediatric cohorts in the U.S., revealed protective effectiveness of the BNT162b2 vaccine on long COVID as well as body-system-focused PASC condition clusters. The findings suggested the vaccine’s predominant benefit in protecting against long COVID outcomes is its capacity to reduce the risk of SARS-CoV-2 infection." Article | Thread Brain, Behavior, & Immunity - Health Acute serum protein biomarker profile and prevalence of persistent (>6 months) neuropsychiatric symptoms in a cohort of SARS-CoV-2 PCR positive patients in Cape Town, South Africa. — van Niekerk et al. "The high prevalence of persistent neuropsychiatric symptoms in this African cohort supports ongoing attention to long COVID. Acute and early serum protein biomarkers were not associated with persistent neuropsychiatric outcomes post-COVD-19." Article | Thread Zenodo Características clínicas y expresión génica de citocinas en pacientes con síndrome post-COVID-19 — Valencia-Gutiérrez et al. Article in Spanish. "Protective factors for fatigue were serotonin expression with an OR of 0.238 (95% CI 0.060-0.949); for concentration problems, SOCS3 with an OR of 0.188 (95% CI 0.037-0.946), and for memory impairment IFNL4 OR 0.094 (95% CI 0.015-0.586)." Article | Thread Global Public Health The erasure of infection-associated chronic conditions: Critical interpretive synthesis of literature on healthcare for long COVID and related conditions in Brazil — Flora Cornish et al. "This article has identified processes of erasure of IACCs with damaging consequences for people living with long COVID and other IACCs, and exacerbation of health and social injustices." Article | Thread BMJ Public Health Global prevalence of long COVID and its most common symptoms among healthcare workers: a systematic review and meta-analysis — Amani Al-Oraibi et al. "This review highlights the substantial burden of long COVID among HCWs worldwide. However, limitations in data quality and inconsistent definitions of long COVID impact the generalisability of these findings." Article | Thread Annals of Clinical Microbiology and Antimicrobials Long COVID clinical evaluation, research and impact on society: a global expert consensus — Ewing et al. "A 3‑round modified Delphi consensus methodology was distributed internationally to 179 healthcare professionals, researchers, and persons with lived experience of Long COVID in 28 countries." "This work forms initial guidance to address the spectrum of Long COVID as a disease and reinforces the need for translational research and large‑scale treatment trials for treatment protocols." Article | Thread PM&R Multidisciplinary collaborative guidance on the assessment and treatment of patients with Long COVID: A compendium statement — Abby Cheng et al. "This compendium aims to equip clinicians with an efficient, up-to-date clinical resource for evaluating and managing adults experiencing Long COVID symptoms." Article | Thread Clinical Microbiology and Infection ORCHESTRA Delphi consensus: diagnostic and therapeutic management of Post-COVID-19 condition in vulnerable populations — Gentilotti et al. "we applied the Delphi approach to drive recommendations for the diagnosis, management, and prevention of PCC in people living with HIV (PWH) and patients affected by rheumatological diseases (RD) and haematological malignancies (HM)" Article | Thread ............ S4ME social media: Forum, Mastodon, Bluesky
