This thread has a Science for ME 'News in Brief' post for each week in January 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 30th December 2024 Happy New Year to all our readers News, articles and advocacy ME/CFS Skeptic Blogger ME/CFS Skeptic has written an excellent overview of the most interesting ME/CFS research studies of 2024. Studies discussed range across biomedical, the effects of exercise, effects of ME/CFS on people's lives, prevalence, Long Covid, and the disappointing NIH Intramural study. Article | Thread Dr Carmen Scheibenbogen The Pontifical Academy of Sciences organised a workshop November 2024 on SARS-CoV-2 Health Policies, Vaccination and Long COVID. Scheibenbogen gave an excellent talk on Long Covid (including ME/CFS). The talks have been uploaded on YouTube with Scheibenbogen's listed as nr. 4. Talks l Thread The Red Tree and M.E. In this blog Dr. Jo Greer, who is an educational psychologist and carer for a daughter with severe ME, tells of how the book "The Red Tree" by Shaun Tan has helped and provided support though a red leaf as a symbol of hope. She has asked scientists, researchers, clinicians and advocates involved with ME, Long Covid and other Infection Associated Chronic Condition to share a 'red leaf' and got 23 lovely responses. She writes: "My best hope is that these heartwarming messages about scientific progress and collaborative endeavour encourage you at some level, whatever (and maybe even despite) your circumstances, especially as we enter a new year." Article 1 'The Red Tree and M.E. - One leaf at a time Article 2 'We shall have spring again' - Messages of hope and solidarity for 2025 Thread Dr David Putrino has been guest of the podcast Long COVID The Answers. In this first episode of two, he talked about the pathophysiology of Long Covid. The interview is available in both audio and video version as well as with a transcript. Podcast l Thread Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1 This part examines the first excuse given by Cochrane, a lack of resources to oversee the review, pointing out it was Cochrane that made the process overcomplicated, and much of the work has been done. "Do personal allegiances outweigh a commitment to good science? An alternative no-cost solution would have been to withdraw the Larun review - there are good grounds to do so. Why is Cochrane so determined to maintain the Larun et al review, in the face of such substantial costs to people with ME/CFS and to itself?" Petition | Update | Thread ............ Resources USA - A reminder that the Bateman Horne Center has a list of Healthcare Professional Continuing Medical Education (CME) courses on their website that you can share with your doctor if they want to learn more about ME/CFS. Two of the courses are expiring soon (end of January). Website | PDF | Thread ............ Coming events The IACFS/ME (International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis) will hold its 17th Medical and Scientific Conference from October 22 - 25, 2025 at Nova Southeastern University in Florida. "Anyone interested in ME/CFS, fibromyalgia, related conditions (e.g. mass cell activation syndrome, dysautonomia), COVID-19, and sequelae of COVID-19 (e.g. long COVID) is invited to participate." Announcement | Thread Bateman Horne Center - Free Online Support Groups Tuesday, January 14, 1:00 - 2:00 PM Mountain Time Topic: Using Effective Coping Techniques for Living with Chronic Illness Tuesday, January 21, 1:00 - 2:00 PM Mountain Time Topic: Using Boundaries to Improve the Illness Experience Advance registration required, see thread for times in your time zone. Event Calendar | Thread ........... Research ME/CFS research Journal of Medical Ethics Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’ — Joanne Hunt and Charlotte Blease "We suggest that attempting to persuade patients of psychological or psychosomatic aetiology, or indeed of psychological or psychosomatic maintaining factors is not only inconsistent with the evidence base but also with the ethical requirement for professional competence." Article | Thread Thesis Comparison Of Clinical And Pathophysiological Characteristics Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome And Chronic Fatigue Associated With Post-Covid-19 Syndrome — Riabkova, Varvara Aleksandrovna "Microcirculatory dysfunction in patients with chronic fatigue associated with PCS is characterized by a specific feature – reduced signal in laser doppler flowmetry during arterial occlusion compared to healthy controls, which may indicate microcirculatory stasis. In contrast, microcirculatory disturbances in ME/CFS patients correspond to the classic picture of endothelial dysfunction, which manifests as a decrease in peak flow during post-occlusive reactive hyperemia response." PDF (Translated to English) | Thread Long Covid research Inflammation Sustained Vascular Inflammatory Effects of SARS-CoV-2 Spike Protein on Human Endothelial Cells — Gultom et al. "coagulation dysregulation has been shown as a significant contributor to the morbidity and mortality of COVID-19 infection as well as the pathology of PASC. We have demonstrated that the spike protein can directly increase the procoagulation state of ECs, consistent with the existing data. In addition, the transcriptomic analysis also showed a prolonged disruption of the regulation of the complement and coagulation cascades" Article | Thread Journal of Infection and Public Health Proteomic analysis of post-COVID condition: Insights from plasma and pellet blood fractions — Seco-González et al. "In the plasma fraction, symptomatic patients exhibited significant upregulation of proteins involved in coagulation, immune response, oxidative stress, and various metabolic processes" "In the pellet fraction, symptomatic patients showed upregulation of proteins related to immune response, coagulation, oxidative stress, and metabolic enzymes, with downregulation observed in components of the complement system, glycolysis enzymes, and cytoskeletal proteins." Article | Thread Preprint Proteomic and metabolomic profiling of plasma uncovers immune responses in patients with Long COVID-19 — Wei et al. "study results indicate significant protein dysregulation and metabolic abnormalities in the plasma of Long COVID patients, leading to coagulation dysfunction, impaired energy metabolism, and chronic immune dysregulation, which are more pronounced than in COVID-19 recovered patients" Article | Thread Nature Scientific Reports Long COVID in transgender and gender nonbinary people in the United States — Wirtz et al. "Long COVID was most common in transmasculine and nonbinary people assigned female sex at birth with no evidence of an association with reported hormone therapy." Article | Thread Nature Scientific Reports Omics-based analysis of mitochondrial dysfunction and BBB integrity in post-COVID-19 sequelae — Dhariwal et al. "By analysing the multi-transcriptome data, this work explores the neurological impacts of the SARS-CoV-2 virus and provides insight into the molecular mechanisms behind BBB breakdown and neurological symptoms in COVID-19 patients." Article | Thread Master's Thesis Bedside Monitoring of Mitochondrial Function in Post-COVID patients: A Feasibility Study — Behr "The study implies that while mitoPO2 decreases significantly after exercise and mitoVO2 increases significantly after recovery, both do not differ significantly between PC patients and controls. However, the observed variance in mitoPO2 after exercise and recovery among PC patients suggests varying disease mechanisms related to oxygen supply." Article | Thread Cardiopulmonary Physical Therapy Journal More than “Brain Fog”: Cognitive Dysfunction and the Role of Occupational Therapy in Long COVID — Skiffington, Helen and Breen, Ciara "The impact of PEM/PESE on quality of life and functional performance should not be underestimated as the effect on daily life can be devastating." Article | Thread Cardiopulmonary Physical Therapy Journal Answering Our Call to Care: Introduction to the Special Issue on Long Covid — Davenport Guest editorial for a special issue of Cardiopulmonary Physical Therapy Journal dedicated to long COVID. Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 6th January 2025 News, articles and advocacy Emerge Australia Awards for Excellence in Journalism Nominations open until 28th February 2025. "We are delighted 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 | Forum Suggestions | Thread USA - KSTP News "Hope fades for proposed Long COVID research investment a year after patients pack U.S. Senate" An update on proposed Long Covid legislation that would "appropriate a billion dollars annually through 2034" to go toward research on "Long COVID and other infection-associated chronic conditions." Article | Thread UK MEA The ME Association Chairman’s Statement for 2024 Reports on recent MEA expansion including a relaunch of the ME Connect advisory service, increased social media staff and activity, a summary of research funded, a project working with some Integrated Care Boards on improving local NHS ME/CFS services, and hints about plans for spending the MEA's large reserves. On governance: "We are committed to undertaking a comprehensive review of our current Articles. That review will look at the Code, the Charity Commission’s Model Articles and any other source of good practice. To this end we shall consult widely and transparently including recruiting an independent charity governance professional to advise the charity." Article | Thread Trial by Error by David Tuller Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid, etc Harm Patients Upload on YouTube of a talk David Tuller gave last year in Ireland, organised by the Irish ME/CFS Association. Video l Thread #ThereForME "This is not about not trying hard enough" For over ten years Karen Galpin has cared for her daughter Sophia who suffers from very severe ME. In this post she provides an honest description of a brutal reality and of much courage: "Sophia is trying so hard every minute of every hour, just to get through that day and night to live again the next day. The mental fortitude and resilience required to live with this destructive disease in the face of so much suffering is both remarkable and truly admirable. The idea that she isn’t trying hard enough couldn’t be further from the truth. The prevailing narrative around ME is both harmful and at complete odds with the reality of living with this devastating and life-changing condition." Article l Thread Bateman Horne Center & Solve ME Severe ME/CFS Webinar Series Session 3: Medical Panel A recording of this webinar, part 3 in a 4 part series on Severe ME/CFS, is now available. A transcript and a resource guide are also available. Video | Resource Guide | Thread Germany German Medscape had an article on ME/CFS titled: "ME/CFS: Why are there still no evidence-based therapies? Scientists struggle for research funding." It includes interviews with Prof. Scheibenbogen and Prof. Wirth. Article | Thread Sweden Chairperson of The Swedish ME Association RME Jenny Lundgren has written an opinion piece for Altinget about severe consequences from the lack of care of ME patients. She asks for a national center of knowledge, specialist care, more research, more education and a patient register for ME. Opinion piece l Thread The Long Covid Clinical Podcast In the latest episode (Episode 6 - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) Dr. Hector Bonilla, director of the ME/CFS Clinic and co-director of the Long Covid Clinic at Stanford, "discusses the similarities and differences between Long COVID and [ME/CFS]." Podcast host Christopher Chiu posted a thread on Bluesky with some highlights. Podcast (Spotify) | Thread ............ Coming events Bateman Horne Center and Solve M.E. Webinar Series Severe ME/CFS: Care, Rights, and Research - Research (Part 4 of 4) Tuesday, January 21, 2025 10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST Advance registration required, see thread for times in your time zone. Announcement | Registration | Thread Massachusetts ME/CFS and FM Association - Sunday Conversations Topic: “Going into the new year, what are your hopes and dreams?” Sunday, January 19 1:00 PM Pacific Time / 4:00 PM Eastern Time Registration required. See thread for times in your time zone. Announcement | Thread Netherlands On Monday 3 February, Post Covid Network Nederland and the Radboud Center for Philosophy and Society are hosting a workshop on Post-COVID ethics. The main language of the event is English. Article | Thread ............ Research news NIH The NIH responded to Jeannette Burmeister that a research misconduct inquiry into the study by Walitt et al. 2024 is not warranted because the allegations do not describe conduct that falls within the definition of research misconduct. They write that it is "up to the reader to consider ... how the result might compare if the same data were analyzed and interpreted using other sound statistical methods." Article | Thread ............ Research ME/CFS research Preprint: MedRxiv Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Ji-Sook Lee et al. "our results elucidate that people with ME/CFS with different symptom severity had different immune profiles in T cells in aspects of activation, differentiation and cytotoxic effector molecule expression." Article | Thread Nature Scientific Reports Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis — Song et al. "This study utilized the MR approach to effectively address the potential effects of confounding factors and reverse causation by using genetic variants associated with the MDD gene as instrumental variables. The results revealed no causal genetic relationship between MDD and ME/CFS, implying that MDD is not a direct genetic cause of ME/CFS." Article | Thread Biomolecules Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe? — Rahman et al. "Based on our recent findings, we observed that tetrahydrobiopterin (BH4) metabolism was highly dysregulated in ME+OI patients. In the current review article, we attempted to summarize our recent findings on BH4 metabolism to shed light on the molecular mechanisms of OI." Article | Thread Immunologic Research Inactivation of ATG13 stimulates chronic demyelinating pathologies in muscle-serving nerves and spinal cord — Drosen et al. "ATG13-repressor mice exhibited enhanced infiltration of M1Mφ cells, STAT3 activation, demyelination of nerve fibers, and PEM-like symptoms, suggesting the potential role of ATG13 impairment in post-exertional fatigue." Article | Thread Long Covid research Frontiers in Systems Biology A multi-omics strategy to understand PASC through the RECOVER cohorts: a paradigm for a systems biology approach to the study of chronic conditions — Sun et al. "We recommended the following strategy: germline whole genome sequencing (WGS) be performed on every RECOVER participant consented for genetic analysis to be used for GWAS studies. Epigenomics, bulk PBMC transcriptomics, plasma proteomics, plasma targeted metabolomics and stool proteomics should be performed on biospecimens from at least 2 time points per participant" Article | Thread Current History Long COVID and the Rise of Digital Patient Activism — Mendenhall "This essay puts Long COVID into context with other embodied health movements, highlighting how Long COVID activism built upon previous social movements, and how digital networking and viral social media messaging set it apart." Article | Thread COVID Methodologic and Policy Efforts to Improve a National Long COVID Study — Jason "The large amount of funds that have been allocated to Long COVID is in sharp contrast to the limited funding that had been provided for ME/CFS research. In part, this has been due to COVID having a clear, specific trigger." Article | Thread International Journal of Language & Communication Disorders Lexical retrieval difficulties in post-COVID-19 syndrome: Insights from verbal fluency and naming tasks — María González-Nosti et al. "the central challenge in PCS appears to be associated with the lexical selection process, and this challenge is particularly pronounced among younger patients. The linguistic profile observed in PCS more closely aligns with a form of pure anomia, wherein patients encounter difficulty when accessing and retrieving specific words from their lexical store. Article | Thread The Lancet Regional Health – Americas SARS-COV-2 re-infection and incidence of post-acute sequelae of COVID-19 (PASC) among essential workers in New York: a retrospective cohort study — Tesleem K. Babalola et al. "Our study revealed that the risk of PASC was significantly higher among individuals with multiple COVID-19 episodes, severe COVID-19 and unvaccinated at first infection." Article | Thread GeroScience Cerebromicrovascular mechanisms contributing to long COVID: implications for neurocognitive health — Fekete et al. "This review investigates key pathophysiological mechanisms contributing to cerebrovascular dysfunction in long COVID and their impacts on brain health." Article | Thread Nature Communications Medicine Impact of extended-course oral nirmatrelvir/ritonavir in established Long COVID: a case series — Cohen et al. Case series. "Among those who take an extended course of nirmatrelvir/ritonavir outside of the context of an acute infection, some experience a meaningful reduction in symptoms, although not all benefits persist." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
