This thread has a Science for ME 'News in Brief' post for each week in June 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 3rd June 2024 News, advocacy and articles UK #MEAction Questions to Ask Prospective MPs About ME/CFS A set of 6 questions on NICE compliant care, research and financial support. "By asking these questions, you can help ensure that prospective MPs are aware of the importance of addressing ME/CFS and are committed to making positive changes for those affected by this debilitating condition". Article | Thread #MEAction has an online survey for people with ME/CFS or Long Covid who have PEM and have tried pacing to manage their symptoms. This survey is open to anyone 18 or older. Survey | Thread The Guardian Life with long Covid - 'I could bench-press 100kg. Now, I can't walk': Lucy's life with long Covid This thorough article tells the story of Lucy Keighley and also presents a typical Long Covid patient story based on responses the Guardian has received from readers. Dr. Binita Kane is interviewed, draws parallels to ME and says: "Not only do we not treat it, we are taught the wrong things about it". Article l Thread The Washington Post has published a group of letters to the editor on the topic of Long Covid. These letters are in response to several recent articles on Long Covid such as this one about Long Covid in communities of color. Letters | Thread ........... Research news The Netherlands The Dutch research institution ZonMw has announced a new funding round for the ME/CFS research program which will start on 17 June 2024. The total available budget in this round is €2,500,000. A maximum of €500,000 per project can be applied for with a maximum duration of 4 years. Article | Thread Aotearoa New Zealand ANZMES Research Grant The application period is now open, through to July 31st 2024. This year two grants valued up to $25,000 and four $5,000 scholarships are available. Announcement | Thread UniteToFight 2024 Videos are starting to become available of the Long Covid and ME/CFS conference held online on 15th and 16th May 2024. YouTube | Thread National Academies of Sciences, Engineering, and Medicine A new report on the long term health effects of COVID-19 has been published which includes "conclusions about Long COVID diagnosis, symptoms, and impact on daily function." Press Release | Report | Thread NIH has published a message from NINDS Director Dr. Walter Koroshetz, Advancing Research on ME/CFS. It discusses the ME/CFS Research Roadmap and the recent NIH Intramural Study on ME/CFS. Article | Thread ........... Coming events USA: National Academies of Sciences, Engineering, and Medicine Report Release Webinar: A Long COVID Definition Tuesday, June 11, 2024 1:00 - 2:00 PM Eastern Time. See thread for time in your time zone. Webinar | Thread ........... Research ME/CFS research Journal of Translational Medicine Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials - Park et al. Among 60 randomized controlled trials, the overall fatigue severity of the 7,088 participants with ME/CFS was 77.9 out of 100. Article | Thread Cogent Public Health The most severely ill patients with ME/CFS in Denmark - Peter la Cour This study is based on qualitative data from 19 home visits to severely ill patients and concludes: "... the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group." Paper l Thread Long Covid research The National Academies Press Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection — National Academies of Sciences "Complex, infection-associated chronic conditions affecting multiple body systems are not new, and Long COVID shares many features with such conditions as [ME/CFS], fibromyalgia, and [POTS]. Current theories about the pathophysiology of these conditions include immune dysregulation, neurological disturbances, cardiovascular damage, gastrointestinal dysfunction, metabolic issues, and mitochondrial dysfunction." Article | Thread JAMA Internal Medicine Nirmatrelvir-Ritonavir and Symptoms in Adults With Postacute Sequelae of SARS-CoV-2 Infection: The STOP-PASC Randomized Clinical Trial — Linda N. Geng et al. "The results of this randomized clinical trial showed that a 15-day course of NMV/r in a population of patients with PASC was generally safe but did not demonstrate a significant benefit for improving select PASC symptoms in a mostly vaccinated cohort with protracted symptom duration." Article | Thread Preprint: MedRxiv Conceptual framework of episodic disability in the context of Long COVID: Findings from a community-engaged international qualitative study — Kelly K. O’Brien et al. "A notable feature of episodic disability in the context of Long COVID in this study was PESE or PEM which transcended physical, cognitive and mental-emotional dimensions, highlighting the ability of the framework to encompass critical features of disability experienced in the context of Long COVID." Article | Thread Nature International Journal of Impotence Research Comparing risk of post infection erectile dysfunction following SARS Coronavirus 2 stratified by acute and long COVID, hospitalization status, and vasopressor administration: a U.S. large claims database analysis — Grutman et al. "We found that patients with long COVID are at a higher risk of being diagnosed with ED than patients with only acute COVID, while there was no significantly increased risk for patients with more severe infection requiring hospitalization or vasopressors." Article | Thread Clinical Epidemiology and Global Health A Holistic Analysis of Symptom Profiles among People with Long COVID-19 in India: A Prospective 1-Year Follow-Up Study — Amin et al. "Out of 350 [hospitalised] participants, 148 respondents (42.3%) recovered after 1 year of illness and 202 (57.7%) were still experiencing symptoms at the time of survey completion." Article | Thread Journal of Allergy and Clinical Immunology Whole blood transcriptome in long-COVID patients reveals association with lung function and immune response — Jelle M. Blankestijn et al. "In this study we clustered the transcriptome of long-COVID patients into two distinct clusters and showed differences in innate and adaptive immune activation and pulmonary function between those clusters." Article | Thread Journal of Infection Early use of oral antiviral drugs and the risk of post COVID-19 syndrome: a systematic review and network meta-analysis — Juan Jiang et al. "Nine observational studies containing 866,066 patients were included, in which nirmatrelvir-ritonavir and molnupiravir were evaluated in eight and two studies respectively, with both drugs evaluated in one study. Pair-wise meta-analysis showed that early oral antiviral drugs reduced PCC risk (RR 0.77, 95% CI 0.68–0.88)." Article | Thread Journal of primary care & community health Pro Inflammatory Cytokines Profiles of Patients With Long COVID Differ Between Variant Epochs — Ganesh R et al. "When stratified by variant epoch, patients with early epoch Long COVID had persistently elevated peripheral pro-inflammatory cytokine levels when compared to later epoch Long COVID. Patients with Long COVID have similar clusters of symptoms across epochs, suggesting that the underlying pathology is independent of the peripheral cytokine signature." Article | Thread PLOS ONE Plasma taurine level is linked to symptom burden and clinical outcomes in post-COVID condition — Mobin Khoramjoo et al. Hospitalised patients. "Increase in taurine levels during the transition to convalescence were associated with a reduction in adverse events independent of comorbidities and acute COVID-19 severity." Article | Thread IDCases Circulating microaggregates as biomarkers for the Post‐COVID syndrome — Hermann et al. "We report on a patient suffering from fatigue, post exertional malaise, pain and neurological symptoms as a consequence of the second CoVID infection. Using live confocal microscopy on native whole blood samples we detected microaggregates of thrombocytes, leukocytes and plasma proteins in peripheral blood." Article | Thread Cureus Growth Differentiation Factor-15 Is Considered a Predictive Biomarker of Long COVID in Non-hospitalized Patients — Rie Ono et al. Study with very small numbers. "Elevated serum GDF-15 levels in the acute phase of COVID-19 may act as a predictive biomarker with the onset of long COVID" Article | Thread Preprint: MedRxiv 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: population-based, nested case-control study — Raphael S. Peter et al. "This nested population-based case-control study demonstrates that the majority of PCS cases do not recover in the second year of their illness, with patterns of reported symptoms remaining essentially similar, nonspecific and dominated by fatigue, exercise intolerance and cognitive complaints." Article | Thread .................... S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 10th June 2024 News, advocacy and articles Trial by Error by David Tuller Professor Esther Crawley, Bristol University's Methodologically and Ethically Challenges Paediatrician, Has Retired From Medicine Professor Esther Crawley has given up her right to practice medicine and appears to also have retired from the University at Bristol. Tuller provides a short recap of her problematic work and "hopes and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems out of the picture". Article l Thread Betsy Ladyzhets on Problems with NIH's RECOVER Initiative A conversation with science journalist Betsy Ladyzhets from The Sick Times. "Ladyzhets recently wrote a new article about RECOVER, published in The Sick Times as well as STAT, based on documents she received from NIH through the Freedom of Information Act. We spoke the other day about what she found out". Interview l Thread Cochrane Review: Exercise therapy for ME/CFS A new review process was announced in October 2019, intended to be completed in early 2022, with planned monthly updates from Hilda Bastian, leader of the IAG (independent advisory group). There were 3 updates in mid 2021, and two in late 2023. Hilda set up an informal 'talkpage' in late 2023 for public communication between formal updates. We still await public consultation on the draft protocol. Talkpage | Thread (members only) Science for ME letters, supported now by 75 organisations worldwide and a petition with over 11,000 signatories call for the withdrawal of the 2019 review by Larun et al. Complaints to Cochrane about the handling of communications and about non withdrawal of the Larun review have not been resolved after many months, with no indication of progress or of which complaints are being addressed. The latest petition update includes new additions of organisations adding their support, and highlights two of many broken promises: Broken promise 1. Monthly updates from the Independent Advisory Group (IAG) Broken promise 2. Revision of the editorial note on the 2019 Review The petition will remain open until the 2019 review is withdrawn. Petition | Letters thread | Petition thread USA - The CDC updated their "Long COVID Basics" web page on June 11, 2024. Website | Thread Aotearoa New Zealand The latest entry in the Tapanui Flu blog series "An Unexplained Illness in West Otago", marking the 40th Anniversary of the publication the first formal research paper on the Tapanui 'Flu epidemic. Article | Thread Norway A thorough and informative article on PEM from the science news site forskning.no. Article l Thread The Guardian Childhood, interrupted: 12-year-old Toby's life with long Covid 111,816 children in England and Scotland are estimated to have Long Covid. Toby and his family describe the harsh reality and impact of this disease. Dr. Binita Kane says the NHS is not keeping up with the massive challenge Long Covid represents. The article also mentions reinfection as an elephant in the room. Article l Thread Post-Exertional Mayonnaise Oonagh Cousins & the dangers of the Lightning Process An insightful conversation with Oonagh Cousins, former professional rower with team GB "about her personal experience of long covid, processing chronic illness guilt and grief, and her brief engagement with the Lightning Process.." YouTube video l Thread Australia ABC News - Too many children with long COVID are suffering in silence. "One of the things that shocks Dr Scoullar most, though, is how many of her patients have struggled with other doctors, especially paediatricians." Article | Thread ............... Research news and commentary Australia Australian Government invests $14.5m into LC research "The 12 grants are the first investments from a $50 million commitment from the Medical Research Future Fund (MRFF) to generate better evidence on the effective management of long COVID in the Australian community." Announcement | Thread OMF Australia video "Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients" Chris Armstrong, leader of the Melbourne ME/CFS Collaboration. Duration 5 minutes. "The team plans to study 200 patients over three years. Each patient will be part of the study for about 3 to 4 months, during which they will try 2 to 3 different treatments." "By collecting a large amount of diverse data from many patients and applying machine learning techniques, the researchers aim to identify patterns that can predict which treatments will be most effective for specific subgroups of ME/CFS patients." Video | Thread Jarred Younger Research priorities for the second half of 2024 In this short video (9 minutes) Dr. Younger lists the major projects he is running in the second half of 2024. Video | Thread DecodeME is advertising the post of Communications and Engagements Officer, full time, remote working, fixed term contract to August 2025. Closing date for applications: 12:00hrs, 19th June 2024 Details | Thread Thoughts about M.E. - The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” by Jeanette Burmeister A four part analysis of the NIH study focuses on the EEfRT task used to justify their central hypothesis of 'effort preference' in the publication of the intramural ME study. Burmeister demonstrates through her own analysis of the data that the NIH analysis was badly flawed, leading to false conclusions. "The agency, in essence, pathologized pacing and branded ME with a new and highly prejudicial malingerers’ label." Part 1 | Part 2 | Tweets | Twitter thread | Thread Medpage Today Here's What is Wrong With the National Academies' Long COVID Definition - by Leonard Jason, PhD Opinion piece where Prof. Jason argues the case definitions for Long Covid are too broad. He warns against repeating mistakes made with ME/CFS and, among other points, to the 2015 National Academies' ME/CFS report where broadened criteria were used for research purposes skewing results. Article l Thread ............... Research ME/CFS research Journal of Clinical Medicine Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire - Sommerfelt et al. The authors developed a new questionnaire, FUNCAP, to accurately assess functional capacity in ME/CFS patients. Good reliability and validity and negligible floor and ceiling effects were found in both a large Norwegian (n = 1263) and a separate English-language international sample (n = 1387). Article | Thread The Lancet Effectiveness of a symptom-clinic intervention delivered by general practitioners with an extended role for people with multiple and persistent physical symptoms in England: the Multiple Symptoms Study 3 pragmatic, multicentre, parallel-group, individually randomised controlled trial - Burton et al. The authors conducted a randomized trial of a 'symptom-clinic intervention' which focused on explaining persistent symptoms. Although the control group received no intervention, the effect size found was lower than the minimal clinically important difference. Article | Thread Long Covid research Annals of Clinical and Translational Neurology Altered brain perfusion and oxygen levels relate to sleepiness and attention in post-COVID syndrome — Claudia Chien et al. "our study shows widespread reductions in cerebral blood oxygen levels in PCS that are related to symptoms of daytime dysfunction and cognitive impairment. Changes in oxygen metabolism and blood perfusion may serve as an adaptive mechanism to mediate brain vascular damage and/or as a mode of maintaining normal daily functioning." Article | Thread European Journal of Nuclear Medicine and Molecular Imaging Persistent brain metabolic impairment in long COVID patients with persistent clinical symptoms: a nine-month follow-up [18F]FDG-PET study — Horowitz et al. "SARS-CoV-2 provokes persistent long-term brain metabolic changes on brain FDG PET in the selected population of patients with prolonged long COVID symptoms, without progressive worsening of the hypometabolisms." Article | Thread Magnetic Resonance Materials in Physics, Biology and Medicine Metabolic changes assessed by 1H MR spectroscopy in the corpus callosum of post-COVID patients — Pajuelo et al. "Significantly increased Cho concentrations and decreased NAA/Cho were found in the CCS in the older post-COVID-19 subjects." "may be related to the microstructural reorganization in the corpus callosum (also reported in diffusion measurements) rather than increased membrane turnover." Article | Thread Immunity Challenges and opportunities in long COVID research — Rebecca E. Hamlin and Catherine A. Blish "LC affects patients worldwide, so it is imperative to recognize health disparities and variable access to research opportunities across communities, countries, and global regions and to implement strategies to become a more inclusive and equitable global research field." Article | Thread Neuropsychology Review Meta-analysis of Cognitive Function Following Non-severe SARS-CoV-2 Infection — Austin et al. "The aim of this meta-analysis is to describe objective cognitive impairment in individuals with non-severe (mild or moderate) SARS-CoV-2 cases in the post-acute stage of infection." Article | Thread Occupational Medicine Vocational rehabilitation for Long Covid: a roadmap for recovery — Parkin et al. "Long Covid and similar energy-limiting illnesses cause a range of health problems which result in long-term sickness absence and long-term unemployment in an era of workforce shortage. The variability of the condition and of employer attitudes, severity of impact on daily life and work, and the fluctuating nature of the condition pose the question of how to manage a sustained return to work." Article | Thread Frontiers in Psychology Poor sleep quality may trigger cognitive deficits after recovery from COVID-19 — Carnes-Vendrell et al. "We found that PCC participants with poorer sleep quality had worse cognitive performance in some domains (verbal and visual memory and processing speed), with a moderating effect on quality of life, cognitive reserve, and everyday memory failure." Article | Thread .................... S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
