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
Week beginning 13th January 2025 News, articles and advocacy Europe The European ME Coalition (EMEC) gave an update on the Horizon Europe call on high-burden, under-researched conditions. Three funded projects have been announced and focus on endometriosis, familial hypercholesterolemia, and difficult-to-treat rheumatoid arthritis. EMEC was involved in a major consortium that included ME/CFS experts across Europe but failed to obtain funding. Article | Thread Sweden The local newspaper Smålandsposten writes about ME sufferer Teresia Kindstrand whose benefits are so low they don't cover necessities as food and medicines. She also explains that food costs are even higher for those who are too sick to do the shopping themselves. Article l Thread The Swedish Covid Association has filed a complaint against the National Board of Health and Welfare for ignoring the voices of patients. A disappointed journalist Agnis Arpi from Altinget draws parallels with the treatment of ME patients and had hoped things could have turned out better for Long Covid patients. Opinion piece l Thread The Swedish Covid Association has made an online document about patient's rights covering many aspects of how to navigate in the health care system. The patient organisation for ME (RME) has also published it, with some adjustment for ME patients. Covid Association's document l RME document l Thread TIME Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards Good article on the negative outcomes for patients when Long Covid and ME are psychologised. Comments from among others researcher/clinician David Putrino and patient advocate Rivka Solomon. Article l Thread USA "Statement from Monica M. Bertagnolli, M.D., on ending her tenure as NIH director" Monica Bertagnolli writes about her tenure as director of the National Institutes of Health (NIH) which ends on Jan. 17, 2025. Announcement | Thread USA News10 ABC Meet the Americans who still take COVID-19 precautions seriously On clinically vulnerable patients (including an ME patient and a carer) shielding from Covid-19. Researcher Leonard Jason says trauma is part of the experience of chronic illness, and then there's additional traumatisation by the societal reaction to the illness. Researcher Akiko Iwasaki is also taking precautions and says: "I just can't afford to get sick and become chronically ill". Article l Thread Australia News.com.au ‘Devastating’: Australians lift lid on life-threatening national medical crisis Zoe Simmons writes of her own and others' experiences with ME/CFS and medical gaslighting. "This dismissal isn’t just devastating. It can cause long-term health impacts when symptoms are ignored and conditions go untreated." Article | Thread The Sick Times "We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride" Article about a group in South Africa called SICK Pride ("Society for the Inclusion of Chronic Knowledge") that's trying to increase visibility for energy-limiting chronic illnesses like ME/CFS and Long COVID. They held their second annual SICK Pride event in November 2024. Article | Thread ......... Research news and commentary Trial by Error by David Tuller BMJ Has Corrected the REGAIN Trial Paper - But Not the Editorial or Systematic Review Touting REGAIN's Finding Article l Thread Australia National Centre for Neuroimmunology and Emerging Diseases - NCNED NCNED is pleased to announce that our 4th ME/CFS, long COVID and Gulf War Illness (GWI) International Conference: RID – Research, Innovation and Discovery 2025 will be held on November 12th and 13th, 2025. Facebook Announcement | Thread Bateman Horne Center "COVID-19 Triggers ME/CFS" In this blog post Suzanne D. Vernon writes about the recent RECOVER study which found that "among participants infected with SARS-CoV-2 the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates." Blog | Thread ........... Research ME/CFS research Journal of General Internal Medicine Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study — Vernon et al. "The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants." Article | Thread Journal of Translational Medicine Machine learning and multi-omics in precision medicine for ME/CFS — Huang et al. "We provide an overview on machine learning concepts for analysing large-scale biological data, highlight key advancements in multi-omics biomarker discovery, data quality and integration strategies" Article | Thread PLOS ONE Hippocampal subfield volume alterations and associations with severity measures in long COVID and ME/CFS: A 7T MRI study — Kiran Thapaliya et al. "Our study found significantly larger volumes in the left hippocampal subfields of both long COVID and ME/CFS patients compared to HC." Article | Thread Preprint: MedRxiv Autoantibody-Driven Monocyte Dysfunction in Post-COVID Syndrome with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Alexander Hackel et al. "In general, PCS patients exhibit distinct patterns of cytokine upregulation associated with immune dysregulation, tissue repair, and chronic inflammation." "In pcME/CFS, AABs mediated strong inflammatory and neurotrophic cytokines indicating immune and endothelial dysregulation." Article | Thread New Frontiers in Statistics and Data Science When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda The author notes multiple statistical issues in the PACE trial such as not accounting for multiple pairwise comparisons and inconsistencies between the theoretical assumptions underpinning the sample size calculations and the prior beliefs of the trial’s research team. Article | Thread Frontiers in Human Neuroscience CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that - Vink & Vink-Niese The authors criticise the cognitive behavioural model of ME/CFS and the use of graded exercise therapy: "If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve." Article | Thread Long Covid research Nature Molecular Psychiatry Choroid plexus volume is enlarged in long COVID and associated with cognitive and brain changes — Diez-Cirarda et al. "The ChP enlargement was associated with cognitive dysfunction, grey matter volume reduction in frontal and subcortical areas, white matter integrity and diffusivity changes and functional connectivity changes. These ChP changes were also related to intermediate monocytes levels." Article | Thread Brain, Behavior, & Immunity - Health Glial activation among individuals with Neurological Post-Acute Sequelae of Coronavirus disease 2019: A Brain Fog Positron Emission Tomography Study of [18F]-FEPPA — Clouston et al. "when compared to healthy controls, hippocampal [18 F]-FEPPA distribution volume was able to identify individuals with N-PASC with sensitivity/specificity/F1 at the estimated cutoff of 0.88/0.93/0.88. If replicated, this degree of accuracy could support the use of [18 F]-FEPPA to positively identify a diagnosis of N-PASC." Article | Thread Nature Scientific Reports Neurological post-COVID syndrome is associated with substantial impairment of verbal short-term and working memory — Charles James et al. "We found that PCS patients with neurologic symptoms were impaired in working memory and attention. Of note, we performed the TAP test twice during the neuropsychological assessment revealing significantly longer reaction times at the second investigation, potentially reflecting a consequence of cognitive fatiguability." Article | Thread Influenza and Other Respiratory Viruses SARS-CoV-2 Viral Load and Cytokine Dynamics Profile as Early Signatures of Long COVID Condition in Hospitalized Individuals — Jacobo Alonso Domínguez et al. "our study provides an early signature that highlights the different profiles in [viral load] and cytokine dynamics from the onset of infection and the following weeks between individuals who develop long COVID and those who do not." Article | Thread BMJ Open Patient-reported outcome measures for post-COVID-19 condition: a systematic review of instruments and measurement properties — Ann-Kristin Baalmann et al. "The LCSS measuring PCC-related stigma can be recommended for future use. The Iranian version of the C19YRS, the English and Turkish 15-item versions of the C19-YRSm, as well as the LC-SSS cannot be recommended based on the current evidence. All other included PROMs have the potential to be recommended but require further validation." Article | Thread Patient Education and Counseling Long COVID patients’ reconstruction of medical gaslighting discourse in online epistemic communities — Plastina "This study has explored how LC patients’ online accounts bring to the fore the unethical practice of medical gaslighting and its intrinsic epistemic dimensions. Accounts displayed power dynamics that enable MG doctors to victimise their patients through a wide range of MG types driven by epistemic injustice, ignorance and discrimination." Article | Thread Annals of Physical and Rehabilitation Medicine Effect of respiratory rehabilitation on quality of life in individuals with post-COVID-19 symptoms: A randomised controlled trial — del Corral et al. "The aim of this study was to assess the effect of adding inspiratory and expiratory muscle training to an [aerobic exercise] training program on short-term HRQoL and exercise tolerance in individuals with [LC]" "the differences between groups were not statistically significant for HRQoL, exercise tolerance, psychological distress, and lung diffusing capacity." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 20th January 2025 Cochrane review Exercise Therapy for ME/CFS As we reported in December 2024, Cochrane has cancelled the new review process and republished the 2019 review by Larun et al. as a 2024 review with the only change being an editors note announcing the cancellation. Some public responses have now been published: Retraction Watch Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome The article quotes our petition, Jonathan Edwards and Cochrane. Hilda Bastian is quoted: “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” Article | Thread Independent Advisory Group Letter to Cochrane posted on Hilda Bastian's talkpage "For nearly five years, we supported the project despite several lengthy unexplained delays. We were not asked for advice at key points, such as when the editorial unit received the draft protocol." The hard hitting letter goes on to criticise Cochrane's failures in all aspects of the process and its responsiblity to deal properly with outdated reviews. Letter | Thread PLOS Blogs - Absolutely Maybe by Hilda Bastian When Journal, Scientific Society, and Community Values Clash In a detailed article Hilda describes some of the background and her experiences as leader of the Independent Advisory Group. "I considered Cochrane’s decisions and actions in three separate categories: The new/updated review project; the editorial note on the current review; and a cluster of communication and accountability issues, around dealing with criticisms, complaints, and controversies." She concludes, saying of Cochrane: "It cannot afford to burn through social capital acquired over decades. It needs to change course. The new conflict it has created around the ME/CFS review presents it with a valuable opportunity to do so." Article | Thread Science for ME petition update shares the above news, and comments: "Now that the IAG has finally gone public, we call on those ME/CFS organisations with representatives in the IAG who previously felt they had to keep quiet to join this campaign. Please stand with the 79 ME/CFS and Long Covid organisations from around the world already supporting the call for the Larun et al review to be withdrawn from use." Petition update | Thread Science for ME complaint The S4ME committee has submitted a complaint to Cochrane, outlining our previous complaints and correspondence. We show that Cochrane has not provided us with any substantive response to our previous complaints, contrary to their own complaints procedure. Complaint | Thread #MEAction The Year Ahead "#MEAction is raising the alarm about Cochrane’s decision to suddenly shut down the 5-year independent analysis of its 2019 review of exercise therapy for ME/CFS... MEAction is taking action to reverse this decision." Article | Thread Trial by Error by David Tuller Cochrane's Decision on Exercise Review is Hurting Patients, Says Longtime Insider About Hilda Bastian's "damning assessment" of Cochrane's decision to abandon their commitment of producing a new version of the review on exercise as treatment of ME/CFS. Article l Thread ............ News, advocacy and articles NHS England ME Association article: NHS England Launches the Second E-learning Module on ME/CFS! "This is the second of a three-part series of continuing professional development (CPD) resources. The final module will be about severe and very severe ME/CFS and is expected by the end of April." The module focuses mainly on diagnosis, management and support. NHS England module | MEA article | Thread #ThereForME When bad science becomes orthodoxy A guest post from David Tuller about his Trial by Error project investigating scientific, methodological and ethical problems with the research fields ME/CFS and now Long Covid. He also shares the good news that he plans to "keep on slogging away for at least a while longer, seeking to push back against the scientific garbage that continues to pollute the medical literature in this field". Article l Thread Sweden The union magazine Arbetet writes that thousands of people are on sick leave with no sickness compensation, and have to make do with the lowest social assistance which must be applied for each month. This is particularly difficult for people with chronic illnesses. Kristina Bergman who suffers from ME asks when the rules will change for people in her situation and when they will be believed in that they can't get back to work. Article l Thread Norway ME patient and board member of the organisation the ME parents Lena Kjempengren-Vold has written three great opinion pieces recently: A critique of the national competence center for ME/CFS and their biopsychosocial approach. Article Arguing for strengthening the education about ME, ensuring real consumer participation and encourage cooperation between medical research groups and clinicians. Article A defence for a biomedical approach to ME. Article ME patient, psychologist and author Frøydis Lilledalen has also written an excellent piece where she argues that it's a duty for the psychological field to recognise the biological realities of ME. Article Thread YouTube Vikings Actress Jennie Jacques interviews Dr Peter Rowe MD Interesting conversation about orthostatic intolerance and Dr Rowe's approach to his patients with POTS and ME/CFS. Video l Thread Solve ME and Bateman Horne Center have co-hosted a four part webinar series on Severe ME/CFS. Recordings for sessions 2 and 3 are now available online. Session 2 | Session 3 | Thread Petition Line from Denmark suffers from very severe ME and lives in a nursing home but is in danger of being moved to a psychiatric hospital against her will. A petition has been organised by Dr. Alexis Gilbert on behalf of the Severe ME Advocacy Group urging for an improvement of her care in line with international guidelines. Petition l Thread ......... Research news and commentary NIH Research Roadmap Webinars (2023/2024) A thread has been created by forum member @forestglip to post summaries of past NIH webinar videos. These summaries may be helpful for people who have trouble watching videos. Thread Germany The University Hospital Regensburg (UKR) is initiating the "Miracle" project together with the University Hospital Gießen and Marburg (UKGM) to research ME/CFS. The three-year joint project is intended to provide new insights and is funded by the Federal Ministry of Education and Research (BMBF) with a total budget of 2.5 million. Article | Thread .......... Coming events UK Cure ME The UK ME CFS Biobank is organizing the first CureME event of the year on Monday 10 February, 14.00. The interactive webinar will focus on: "Building Bridges: Community Strategies and Research Insights from the CureME Team for #MECFS Study Participants". Article | Thread .............. Research ME/CFS research Preprint: MedRxiv Actively Protective Combinatorial Analysis: a Scalable Novel Method for Detecting Variants that Contribute to Reduced Disease Prevalence in High-Risk Individuals — J Sardell et al. "We were able to identify genes that have been shown to have a key role in disease biology but that were overlooked by conventional meta-GWAS analyses in much larger datasets." Article | Thread Nature Scientific Reports Association between chronic fatigue syndrome/myalgic encephalomyelitis and cardiovascular disease — Denu et al. "A history of [ME/CFS] was significantly associated with CVD (aOR 3.26, 95%CI 2.85, 3.72, p-value: <0.001) after adjusting for traditional CVD risk factors." Article | Thread Journal of Translational Medicine Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue — Edwards et al. "the EAST was abnormal in 98% of those reporting symptoms with arms-overhead or arms-extended postures. This prevalence compares to 43% who had an abnormal ULNT1, another commonly used screening maneuver for thoracic outlet syndrome." Article | Thread eClinicalMedicine Post infectious fatigue and circadian rhythm disruption in long-COVID and other infections: a need for further research — Livieratos et al. Opinion. "This paper focuses on unraveling this complex relationship, with particular attention to Long COVID as a model for understanding post-infectious fatigue syndromes. By highlighting circadian dysregulation as a potential therapeutic target, we aim to underscore the importance of further research in this area" Article | Thread Long Covid research PLOS Medicine Persistent symptoms and clinical findings in adults with post-acute sequelae of COVID-19/post-COVID-19 syndrome in the second year after acute infection: A population-based, nested case-control study — Raphael S. Peter et al. "the majority of working age patients with PCS did not recover in the second year" "findings do not support hypotheses of viral persistence, EBV reactivation, adrenal insufficiency or increased complement turnover as pathophysiologically relevant" "post-acute vaccination against SARS-CoV-2 did not appear to be associated with PCS improvement." Article | Thread JAMA Network Open Sex Differences in Long COVID — Dimpy P. Shah et al. "This prospective NIH RECOVER-Adult cohort study found that female sex was associated with an increased risk of long COVID compared with male sex and that the association was age, pregnancy, and menopausal status dependent. Understanding the mechanisms of sex differences can provide preventive and management strategies for not only long COVID but also other postviral illnesses." Article | Thread Frontiers in Immunology Identification of an immunological signature of long COVID syndrome — Guerrera et al. "We propose, therefore, that among the identified immunological markers, tracking the expression of CXCR5+ on CD8 and on [gamma-delta] T cells in the periphery may help in identifying LC individuals." Article | Thread Nature Pediatric Research Distinct pro-inflammatory/pro-angiogenetic signatures distinguish children with Long COVID from controls — Buonsenso et al. "a group of four inflammatory cytokines (CXCL8, CCL7, CXCL11 and OSM) and angiogenetic factors (VEGF, TNSF14) had a particularly differential expression in patients with Long COVID compared with healthy controls." Article | Thread Clinical Autonomic Research Attenuated cardiac autonomic function in patients with long-COVID with impaired orthostatic hemodynamics — Hira et al. "Attenuated parasympathetic and sympathetic modulation is suggested in patients with long-COVID compared with healthy controls." "Different subgroups of patients with long-COVID show differences in heart rate variability, blood pressure variability, and baroreflex sensitivity, which may contribute to the differences in observed hemodynamic abnormalities associated with upright posture." Article | Thread Nutrients Vitamins K2 and D3 Improve Long COVID, Fungal Translocation, and Inflammation: Randomized Controlled Trial — Atieh et al. "This trial aims to investigate the effects of vitamins K2/D3 on LC symptoms, as well as gut and inflammatory markers, in people with established long COVID. Our hypothesis is that by attenuating systemic inflammation, vitamins K2/D3 will improve long COVID symptoms." Article | Thread Canadian Journal of Occupational Therapy Perspectives of Rehabilitation Professionals on Long COVID Interventions to Facilitate Return-to-Work — Cassandra MacKinnon et al. "More than half of the participants reported that from their clients who did RTW, which constitutes a very small percentage of their caseload, none were able to do so within 3 months." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 27th January 2025 News, advocacy and articles Sweden Patient advocate and forum member Mitt Eremitage has gathered information about a planned study on fatigue by the psychologist Elin Lindsäter, who is part of the Oslo Chronic Fatigue Consortium. The information is to provide potential participants the opportunity to make an informed choice about whether or not to join. Article (autotranslated into English) l Thread Opinion piece from the Swedish Covid Association on why they have filed a complaint against the National Board of Health and Welfare for not following protocol in gathering information for a clinical guideline for Long Covid, ME/CFS and related illnesses. Article l Thread The local newspaper ST-tidningen writes about Jessika who suffers from severe ME and is fighting a long and hard battle to get basic and necessary care. Article l Thread Opinion piece by a group of experts from "Pandemifonden" on the need for more research into viruses and pandemics, and also on the importance of getting an overview of the total costs of virus infections, including post viral disease and other common chronic illnesses virus infections may cause. Article l Thread The Sick Times "Vital Long COVID data taken down following Trump order" Long COVID prevalence data are among CDC information taken offline following Trump order to remove “gender ideology” references. Article | Thread CrunchME The patient-led organisation CrunchME has published its first report titled: "The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions." It provides a professional and detailed overview of why research into Infection-Associated Chronic Conditions is urgently needed. Article | Thread ........... More on the Cochrane decision (see last week's news) BMJ Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy - Jacqui Wise "A decision to cancel a planned update of a Cochrane systematic review of exercise therapy for chronic fatigue syndrome has met with anger from a group advising the review and the patient community." The article gives a clear outline of events with opinions from Cochrane, Hilda Bastian and ending with a quote from the S4ME petition update. Article (paywalled) | Thread with full copy Letter to BMJ Professor Jonathan Edwards has submitted a letter to BMJ in response to the above article, headed "Advocates of the intervention launched a full-on bid to try to stop the project", a quote from Hilda Bastian (see last week's news). He concludes: "This really is a shocking story. Whoever was responsible for the decision to block the project should be required to publicly explain their actions. Otherwise, Cochrane’s reputation is worthless." Thread with copy of letter RiffReporter ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network - Martin Rücker (translated from German) A comprehensive article highlights ongoing pressure from exercise therapy proponents, naming Wessely, White, Sharpe and Garner. The importance of PEM in current diagnostic criteria and the harmful consequences of exercise rehabilitiation are described. "The Cochrane organization told RiffReporter that the decision was made at a meeting of the Governing Board, Cochrane's highest governing body, which took place in Prague from 7-9 September" The Cochrane editor-in-chief had recently had to apologise, after much controversy, for a flawed mask review. "According to people involved, it created a certain amount of conflict fatigue. A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive. This attitude, the complaints from ME/CFS patients that had been piling up for a long time, plus the constant fire from Graded Exercise advocates who wanted to prevent a review update anyway - all of this combined apparently led to the decision to abandon the project." Article (in German) | Translation (DeepL) | Thread Science for ME petition update More publicity Cochrane won't want to see The petition now has over 15,000 signatories from 85 countries. This update highlights the BMJ article and social media posts by journalist George Monbiot. The second bogus reason given by Cochrane for cancelling the new review is examined under the headings 'New research isn't needed to justify a new review', and 'And there is new research'. Petition update | Thread Critical comments Cochrane operates a comments system allowing critical comments on the content of a review to be attached in the supplementary material of the review. These are normally addressed in any review update process. Now that the update has been cancelled, comments from 2019 onwards remain unaddressed, yet are now labelled on the 2024 version as referring to the previous version. Michiel Tack's new comment draws attention to his detailed 2020 criticisms remaining unaddressed despite a published editor's assurance they would be. New comments from Ann Milne and Michiel Tack address whether the fatigue outcome reaches clinical significance, and whether the evidence should be rated low or moderate. The lead author of the review has replied, but missed the point. Review comments | Thread .............. Research news and commentary Deutsches Zentrum für Herz-Kreislauf-Forschung This German article focuses on the VADYS-ME research project. It received 2.5 million euros in funding and investigates how vascular problems and circulatory disorders in patients with ME/CFS could trigger symptoms such as extreme exhaustion and concentration problems. Article | Thread Solve ME "New Clinical Trial Will Test How Baricitinib Improves Neurocognitive Function in Patients with Long Covid" Article about the REVERSE-LC trial (Evaluating Baricitinib on Persistent Neurologic and Cardiopulmonary Symptoms of Long COVID) which is currently recruiting Long Covid patients. Article | Thread Trial by Error by David Tuller Norwegian Long Covid Rehab Trial Misrepresents Clinically Insignificant Findings As "Effective" About a recent study from Wyller et al which has been misrepresented as having glowing results. Tuller assumes the study, despite the results not meeting the threshold for clinically significant benefit, still may be included in a review of Long Covid treatments. Article l Thread ME Research UK – 25 years of Informing, Influencing and Investing in ME research "ME Research UK does not celebrate 25 years of work, but rather marks the commitment of researchers and supporters and what they have achieved. This year, through themed initiatives, the charity will raise the profile of the disease and highlight research efforts." Article | Thread ........... Coming Events Bateman Horne Center - Free Online Support Groups Tuesday, February 11, 1:00 - 2:00 PM Mountain Time Topic: Self-compassion Amidst Chronic Illness Tuesday, February 18, 1:00 - 2:00 PM Mountain Time Topic: Managing Difficult Emotions with Chronic Illness: Guilt and Shame Advance registration required, see thread for times in your time zone. Event Calendar | Thread ........... Research ME/CFS research Nature Scientific Reports Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction — Seeley et al. "There is a high prevalence of reduced cerebral perfusion in those with POTS, which is detectable with supine brain SPECT imaging and is associated with diminished quality of life. The most frequently affected areas are prefrontal lateral and sensorimotor cortices." Article | Thread Journal of Clinical Medicine Assessment of Autonomic Nervous System Function in Patients with Chronic Fatigue Syndrome and Post-COVID-19 Syndrome Presenting with Recurrent Syncope — Milovanovic et al. "Overall, the results demonstrate significant autonomic dysfunction in patients with CFS, both related and unrelated to post-COVID-19 syndrome." Article | Thread European Journal of Neurology Small fiber neuropathy in the post-COVID condition and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical significance and diagnostic challenges — Naiara Azcue et al. "both PCC and ME/CFS patients demonstrated sensory SFN characterized by impaired heat detection and increased tortuosity of small fibers in the central cornea subbasal plexus." Article | Thread Preprint: MedRxiv Digital health app data reveals an effect of ovarian hormones on long COVID and myalgic encephalomyelitis symptoms — Abigail Goodship et al. "When disease type, age, reproductive history and contraception type were adjusted for, the menstrual cycle phase still had a small, but significant impact on symptom score and crashes. Use of combined hormonal contraception was associated with significantly ameliorated symptoms and a reduced risk of crashes." Article | Thread Nutrients Dietary Supplementation for Fatigue Symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systematic Review — Dorczok et al. "Though some DSs showed potential in reducing fatigue in ME/CFS, methodological limitations and inconsistent results hinder definitive conclusions." Article | Thread Long Covid research International Immunopharmacology Post-COVID-19 sequelae are associated with sustained SARS-CoV-2-specific CD4+ immune responses — Venegoni et al. Comparing hospitalised patients with and without PASC. "Our data highlighted a defective CD8+ response compared to the CD4+ subset, one after year the primary infection." "Significant differences came out in CM CD4+ AIM+ cells, producing at least one of the evaluated cytokines. Our data are in line with a previous study that found a higher proportion of CD4+ CM cells in PASC compared to recovered individuals, potentially supporting a persistent reservoir." Article | Thread BMJ Open Respiratory Research Risk of long covid in patients with pre-existing chronic respiratory diseases: a systematic review and meta-analysis — Terry et al. "The results of our meta-analysis of 51 epidemiological studies support the hypothesis that pre-existing asthma and COPD confer moderate, approximately 30–40% increased risks of long covid in adults." Article | Thread Menopause Pre-pandemic leukocyte count is associated with severity of post-acute sequelae of SARS-CoV-2 infection among older women in the Women's Health Initiative — Ng, Ted K.S. et al. "We examined the association of leukocyte count and high-sensitivity C-reactive protein (hsCRP) concentrations, measured ~25 years prior to the coronavirus disease 2019 (COVID-19) pandemic, with PASC, PASC severity, and PASC-associated cognitive outcomes at follow-up among postmenopausal women." Article | Thread Journal of Clinical Medicine Interrelationships Between Plasma Levels of Brain Natriuretic Peptide and Prolonged Symptoms Due to Long COVID — Masuda et al. "Our study revealed that two common symptoms of long COVID, fatigue and brain fog, occur frequently regardless of BNP levels." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
