This thread has a Science for ME 'News in Brief' post for each week in December 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 2nd December 2024 Part 1 of 2 News, articles and advocacy UK APPG The All Party Parliamentary Group for ME, as all APPG's, was laid down at the election. A new group is being launched, with its first meeting at 1700 to 1830 on 17th December 2024. The agenda will include elections and discussion of priorities, including engagement with the Health and Social Care Select Committee, APPG inquiry into severe ME and the Final Delivery Plan for ME. There is a template letter for people to ask their MP to attend. Details | Thread The Times reports that NHS is to review ME services after the coroner at Maeve Boothby O´Neill's inquest issued a prevention of future deaths report and highlighted the lack of treatment for severe sufferers. NICE will also be reviewing the evidence regarding dietary management for severe ME patients. Maeve's father Sean O´Neill comments that this is a positive sign and adds: “However, the actual responses are lacking substance. There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS. And it is upsetting to hear that the Department of Health’s delivery plan on ME appears to have been delayed again until March 2025 — almost three years after work on it began when Sajid Javid was health secretary.” Article (paywalled) l Thread Switzerland SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%. Article l Thread Austrian National Television has made a documentary in German titled "Much Suffering, Little Help - The Illness of ME/CFS". Documentary l Thread Australia Good article in Crikey on the serious social and economical consequences of Long COVID. "The result of infection is lasting symptoms. The result of lasting symptoms: suffering. As the report of the committee into long COVID says, long COVID causes “lost earnings, impacts on household finances, and, in some cases, an inability to work or to extend care to family members including children”." Article l Thread Royal Australasian College of Physicians (RACP) is seeking a member to join the NHMRC Guideline Development Group for ME/CFS. More information l Thread #ThereforME has made a wonderful advent calendar of supportive messages to ME and Long COVID patients. The calendar is shared on #ThereForME's social media accounts on Substack, Twitter/X, Instagram, Bluesky and Facebook. #ThereForME on social media l Thread Rooted in Rights "Doing Harm: How The Remnants of 'Hysteria' Impact Chronically Ill People" Rooted in Rights is an initiative for telling disability stories by disabled people. They have shared this blog by Leah Stagnone who co-founded #MEActions's New Hampshire State Chapter. "... chronically ill people of marginalized gender identities, and just about anyone with a chronic health condition that disproportionately affects women, can attest that modern medicine hasn’t progressed as far beyond the hysteria diagnosis as one might expect." Blog l Thread #MEAction has released a new episode of the Chronically Complex podcast, Episode 9: The Pillow Writers. This ME/CFS writing group has published a collection (fiction and non-fiction, poetry and prose) called Pillow Writers Anthology 1: Near-Life Experiences. #MEAction is sponsoring a giveaway of one paperback copy and one audiobook. Entry deadline is December 15, see thread for details. Podcast website | Thread Pop Sugar "Millions Are Suffering From Chronic Fatigue Syndrome — So Where’s the Urgency?" An article about ME/CFS which shows how research is still underfunded when compared to disease burden. It includes personal experiences from patients (one patient who developed ME/CFS after a COVID infection) as well as quotes from medical experts. Article | Thread The Sick Times "We talked to a veteran lawyer about applying for disability insurance with Long COVID and ME" An experienced lawyer offers advice on how to apply for disability benefits. Discussion includes both social security disability insurance (SSDI) and long term disability (LTD) plans covered by ERISA law. Advice is meant for patients in the USA. Article | Thread ............ Coming events IACFS/ME will organise their 17th Medical and Scientific Conference in Florida, USA October 22-25, 2025. The event is co-sponsored by the Institute for Neuro-Immune Medicine at Nova Southeastern University. Thread with more information Bateman Horne Center - Free Online Support Groups Tuesday, December 10, 1:00 - 2:00 PM Mountain Time Topic: Attending to Loneliness Tuesday, December 17, 1:00 - 2:00 PM Mountain Time Topic: Facing the Holidays with Chronic Illness Advance registration required, see thread for times in your time zone. Event Calendar | Thread Solve ME Webinar "The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished work of the COPVS Task Force" Solve President & CEO Emily Taylor and Dr. Leonard Jason are the speakers. Wednesday, December 18 10 AM Pacific / 1 PM Eastern / 6 PM in Great Britain & Ireland Website | Thread ................ Advocacy Petition A Research Case Definition Consensus Statement calling for a consistent set of required inclusion criteria and to consistent exclusionary conditions as well as a consistent approach for evaluation of key criteria in research into ME. The initiative is led by Caroline Kingdon, Adam Lowe and Leonard Jason. The call has been signed by several researchers and organisations. Others are also invited to sign. Petition l Thread ............... Research news OMF Interview on YouTube with Dr. Ron Davis on the Neutrophil Assessment Platform project and its potential impact on understanding ME/CFS. An early finding which needs to be confirmed is that ME/CFS neutrophils may move slower. Forum member forestglip has provided a summary. Interview l Thread with summary Ron Davis and Janet Dafoe have given a talk for the Bay Area ME/CFS support group about recent work on the itaconate shunt hypothesis. The talk was recorded over Zoom and has been made available for everyone to see. Talk l Thread Solve ME "An Overview of the Fall 2024 PolyBio Symposium" (two parts) Solve ME has posted a two part overview of the recent Fall 2024 PolyBio Symposium including screenshots from some of the presentations. Part 1 | Part 2 | Thread Trial By Error (Virology Blog) - Zeraatkar et al. 'Yet Again BMJ Recommends CBT and Exercise for Long Covid' David Tuller comments on the new review on interventions for Long Covid. He notes that the review makes unfounded recommendations and incorrectly refers to him as a patient or healthcare provider. Article | Thread BMJ rapid response - Zeraatkar et al. Long COVID needs real therapeutics: time to move past disproven approaches A group of several academics including Brian Hughes published a critically commentary on new BMJ review on Long Covid. They write: "Long COVID research should learn from the mistakes of ME research, and swerve away from an inexplicable focus on rehabilitative approaches to the production of well-designed and ambitious trials into therapeutics that target the immune dysfunction, persistent pathogens, vascular abnormalities, and mitochondrial dysfunction that have been shown to underlie Long COVID symptomatology." Article | Thread BMJ rapid response - Zeraatkar et al. 'Heterogeneity in long COVID and inadequate assessment of post-exertional malaise contribute to issues of indirectness in trials with high risk of bias' The comment by patient researcher and S4ME forum member Dominic Salisbury, argues that "despite being presented as a (living) systematic review, the present conclusions are based on results from only a single trial in each case (REGAIN for physical and mental health rehabilitation; and a Dutch trial of CBT). Both of these studies have a high risk of bias..." Article | Thread ME/CFS Skeptic - Zeraatkar et al. In a new article titled 'The BMJ review on Long Covid interventions', blogger ME/CFS skeptic argues that "the issue with imprecision has led to a reversal in that the review now recommends high-risk-of-bias outcomes while ignoring similar estimates that are at low risk of bias." Article | Thread ............. Go to the next post for part 2: Research
Week beginning 2nd December 2024 Part 2 of 2 Research ME/CFS research Proceedings of the National Academy of Sciences Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome — Iu et al. "it is currently unclear whether the T cell dysregulation we observed derives from a chronic infection, such as a virus that triggered or is reactivated in ME, or alternatively, as a result of an inflammatory environment in lieu of antigen-specific stimulation." Article | Thread Long Covid research Brain, Behavior, and Immunity Upregulation of olfactory receptors and neuronal-associated genes highlights complex immune and neuronal dysregulation in Long COVID patients — Shahbaz et al. "We found that LC patients had a distinct transcriptional profile compared to controls. Key findings include the upregulation of genes involved in immune dysregulation and neuronal development, such as Fezf2, BRINP2, HOXC12, MEIS2, ZFHX3, and RELN." Article | Thread Frontiers in Immunology A blood-based mRNA signature distinguishes people with Long COVID from recovered individuals — Missailidis et al. "In this study we showed that the reduced expression of LILRB1 and LILRB2 alone discriminated a small pilot cohort of Long COVID PBMC samples from COVID recovered controls without overlap." Article | Thread Frontiers in Psychiatry Structural MRI correlates of cognitive and neuropsychiatric symptoms in Long COVID: a pilot study — Joshi et al. "Results showed increased cortical thickness in the caudal anterior, isthmus, and the posterior cingulate gyrus as well as the rostral middle frontal gyrus respectively along with higher gray matter volume in the posterior cingulate and the isthmus cingulate in patients with Long COVID." Article | Thread Journal of Medical Virology Association Between NK Cell Genetic Variants and the Development of Long COVID Associated- and Prepandemic Small Fiber Neuropathy — Marianne Graninger et al. "we show that patients with SFN unrelated to SARS‐CoV‐2 infection exhibited markers of impaired NKG2C functions significantly more frequently than healthy controls, while this was not observed for patients with LC‐associated signs of smallfiber dysfunction, including patients with confirmed LC‐SFN." Article | Thread Preprint: Research Square Smartphone-based monitoring of heart rate variability and resting heart rate predicts variability in symptom exacerbations in people with complex chronic illness — Annie Aitken et al. "This study is the first to use data-driven models to predict everyday symptom experiences in individuals with complex chronic illnesses based on biometric fluctuations. Findings demonstrate the potential utility of mobile health tools for real-time monitoring of symptoms" Article | Thread Nature Communications Medicine A 24-month National Cohort Study examining long-term effects of COVID-19 in children and young people — Stephenson et al. "We found that 7.2% of children and young people consistently meet the ‘Long COVID’ research definition at 3-, 6-, 12- and 24-months postinfection." Article | Thread Health Services Research Long COVID and financial hardship: A disaggregated analysis at income and education levels — Biplab Kumar Datta et al. "Our findings suggest that long COVID influenced the economic wellbeing of individuals from all SES categories while households at [income-to-poverty ratios] <2.00 were hit especially hard." Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube Edited to remove a duplicate item that was in last week's News in Brief.
Week beginning 9th December 2024 News, articles and advocacy Scotland Deadline news reports that the Scottish Government will be making its first funding commitment for ME after a 22 year wait. The budget for 2025-2026 has outlined an "additional £4.5m funding to deliver new specialist support across the country for new services for Long Covid, ME, Chronic Fatigue and other similar conditions”. Spokesperson for #MEAction Scotland Janet Sylvester calls it a landmark day and adds that it's critical that funding "should only be given to services that commit to implementing the NICE guideline recommendations" Article l Thread Ireland HSE Survey Examining Long-term Impact of Acute COVID 19 Disease "Due to an unequal response to the survey by age, gender, and self-reported Long COVID status, a statistical adjustment was necessary and estimated that 16% of the population sampled ever experienced symptoms of Long COVID." Press Release | Report | Thread UK ME Association AGM statement In response to issues raised at the AGM, the MEA has published a statement under the headings: 1. Investment into research, information, and support programmes 2. Improving operations, introducing new and updated approaches, Governance Review, Transparency, Consultation and Development over the next 18 months Statement | Thread Trial by Error by David Tuller Agencies Respond to Coroner's Report in Boothby O'Neill's Inquest An overview of response to the Coroner's Report. Tuller comments: "While any progress in addressing the enormous challenges revealed through the inquest is welcome, how much these steps will advance that goal is another question." Article l Thread Sky News had a 20 minutes segment on ME/CFS and the lack of progress since the coroner Maeve Boothby O´Neill's inquest issued a prevention of future deaths report highlighting the lack of treatments for severe sufferers. The segment has an interview with Heather Gordon, mother of Karen who suffers from severe ME and has been 1 year in hospital without getting a care plan in place for essential nutritional needs. Also talks with Anna Gregorowski from BACME, and with Chris Ponting who says: "..There needs to be a societal shift. We are turning our backs on more than a quarter of a milion people across the UK, in clinical practice, in schools, in all across different walks of life. We are turning our back as a society on people who need us now, who have needed us for decades.". News segment l Thread Salon Why conditions like chronic fatigue syndrome and long COVID are still so mysterious "A disease that's prevalent in women highlights the female sex bias in medicine". Contains interview with Chris Ponting from the DecodeME study who says policymakers often are unaware of the devastation of ME and that it flies under the radar. Dr. Charles Shepherd shares his experience as ME sufferer for nearly 40 years. Article l Thread BBC Bedbound patient facing delay feel "buried alive" Deborah Seymour is bedbound after a Covid infection. She has been diagnosed with Long Covid and ME but is not receiving the help she needs. She says: "I need doctors to be open minded and brave - somebody help me". Article l Thread Switzerland A French article in Swiss state news media RTS writes about people with Long COVID going bankrupt because of disability waiting times. Article | Thread The Sick Times "My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her." In the first essay of the new Color of Long COVID series Jacqueline E. Luciano describes how her experience with Long COVID led her to better understand her mother’s experience with ME decades earlier. Essay | Instagram post | Thread .......... Coming events #MEAction organise Caregiver Support Calls on Zoom on the third Saturday of each month. The next call is December 21. More information l Thread .......... In memory Judith Schoßböck (1981 - 2024) Scientist, artist and activist Judith Schoßböck has died. Judith was the founder of the BlackFerkStudio which provided touching insights into life with ME/CFS. The Austrian patient organisation Österreichische Gesellschaft für ME/CFS has written more about her on Facebook: "With this post, we would like to express our appreciation and honor the memory of Judith's dedication, creativity and projects. With her tireless educational work for #MECFS, she will be remembered as a role model." Post from ÖG CFS/ME l Thread ........... Research news Open Medicine Foundation OMF has initiated an ME/CFS biomarker study, called BioQuest. It plans to measure over 10,000 proteins and metabolites in blood samples of up to 1,200 patients and controls that have already been collected and stored. Article | Thread CureME The CureME team that manages the UK ME/CFS Biobank has published an overview of the research work they produced this year. This include studies in HHV-6, low-dose naltrexone, and oxidative stress. Article | Thread ............ Research ME/CFS research Frontiers in physiology Effectiveness of a brief multicomponent intervention to improve physical activity level and functional capacity in fibromyalgia and chronic fatigue syndrome (Synchronize+) - Martin-Borras et al. The authors conducted a randomized trial in 143 patients with fibromyalgia and/or CFS. The goal is to examine the effect of a brief multicomponent intervention based on physical activity, nutrition, and chronobiology. Article | Thread BMJ Open Serial Paediatrics Omics Tracking in Myalgic Encephalomyelitis (SPOT-ME): protocol paper for a multidisciplinary, observational study of clinical and biological markers of paediatric myalgic encephalomyelitis/chronic fatigue syndrome in Australian adolescents aged 12–19 years — Natalie Thomas et al. "The longitudinal repeated-measures study design is optimal for studying heterogeneous chronic diseases like ME/CFS as it can detect subtle changes, control for individual differences, enhance precision and boost statistical power." Article | Thread Long Covid research JAMA Network Open Prevalence of Post–COVID-19 Condition and Activity-Limiting Post–COVID-19 Condition Among Adults — Anjel Vahratian et al. "In 2023, among 29 522 respondents […] 8.4% (95% CI, 8.0%-8.8%) of adults in the US reported they ever had PCC, 3.6% (95% CI, 3.3%-3.9%) currently had PCC, and 2.3% (95% CI, 2.1%-2.5%) currently had activity-limiting PCC." Article | Thread Cancer Medicine Post-acute sequelae of COVID-19 in cancer patients: Two cohorts in UK and Hong Kong — Eric Yuk Fai Wan et al. "Cancer patients with COVID-19 consistently showed significantly higher risk of major cardiovascular diseases […] CVD death […] and all-cause mortality" Article | Thread Infectious Medicine Vascular fibrosis and extracellular matrix remodelling in post-COVID 19 conditions — Kamdar et al. "The presence of histopathological evidence of increased collagen deposition, abnormal [cardiac MRI] findings, and evidence of upregulated ECM related pathways suggests that systemic and vascular inflammation are contributing factors to symptom burden in post-COVID-19 clinical syndromes." Article | Thread Preprints with The Lancet Symptoms and Pathophysiology of Post-Acute Sequelae of SARS-CoV-2 (PASC): A Cohort Study — Robineau et al. "Inflammatory biomarkers associated with COVID-19 severity (IFNγ, IL-8, and CD163) were associated with a wide range of symptoms. Biomarkers associated with vascular damage (VCAM-1, ICAM-1) were also associated with several symptoms." Article | Thread Preprint: MedRxiv Human genetics implicate thromboembolism in the pathogenesis of long COVID in individuals of European ancestry — Art Schuermans et al. "our findings indicate that thromboembolic pathways may contribute to long COVID independently of acute disease severity" Article | Thread Analytical and Bioanalytical Chemistry Long-term dysregulation of plasma peptidome in mild and multiple COVID-19 recovered patients revealed by a novel efficient peptidomics workflow — Song et al. "results revealed that in patients with mild symptoms from the first infection, abnormal regulation of lipid metabolism could persist until the third month post-recovery, while peptide changes related to coagulation dysfunction and infection would continue until the sixth month post-recovery." Article | Thread Brain and Cognition Neuroimaging markers of cognitive fatigue in individuals with post-acute sequelae of SARS-CoV-2 infection — Niemczak et al. "Findings suggest that individuals with PASC and CF may need to exert greater mental effort during demanding cognitive tasks, reflected in recruitment of a broader network of brain regions." Article | Thread Brain Communications Vaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVID — Mukherjee et al. "While vaccination decreases the severity of acute COVID-19 infection and the rate of hospitalization and death, the sobering conclusion of our study is that vaccination prior to infection did not alter the subsequent neurologic manifestations of long COVID in our clinic population." Article | Thread Preprint: BioRxiv Gut Microbiome Signatures During Acute Infection Predict Long COVID — Isin Y. Comba et al. "Our results demonstrate that the gut microbiome during acute SARS-CoV-2 infection can potentially identify patients at risk of developing LC. Variations in the gut microbiome may be intricately linked to the pathophysiology of specific LC symptoms, including gastrointestinal/sensory and fatigue-only clusters." Article | Thread Preprint: MedRxiv “It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study — Kiera McDuff et al. "Participants experienced pacing as being a helpful living strategy to prevent or reduce symptom exacerbation. Many were knowledgeable, and had learned about pacing through online community support groups for people living with Long COVID or other energy-limiting chronic conditions. However, the experiences of pacing were described as a ‘moving target’, involving many challenges, and requiring time, effort, and trial and error to implement effectively." Article | Thread Clinical Autonomic Research Treatments for Long COVID autonomic dysfunction: a scoping review — Treadwell et al. "Overall, we found a general disconnect between the numerous treatments recommended by ten guidelines and the 11 treatments that have been studied empirically. Given the poorly understood nature of autonomic dysfunction, as well as the novelty of Long COVID, this mismatch is understandable." Article | Thread Hormone and Metabolic Research A Single-Center Pilot Study of Therapeutic Apheresis in Patients with Severe Post-COVID Syndrome — Johannes Korth et al. "Following apheresis, 12 out of 20 (60%) patients reported improvement in tiredness, while 6 (30%) reported no change and 2 (10%) reported worse tiredness." Article | Thread ResearchSquare Increased physical performance and reduced fatigue after personalised physiotherapy and nutritional counselling in long COVID - Jimenez-Garcia et al. This Belgian pilot study tested a combination of symptom-contingent pacing and dietary advice for Long Covid patients. The results indicate no significant clinical effect. Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 16th December 2024 Seasonal good wishes to all our readers Part 1 of 2 News, articles and advocacy UK Government Department of Health and Social Care with DfE and DWP Improving the experiences of people with ME/CFS: consultation outcome This document summarises public responses to the consultation about the ME/CFS interim delivery plan. The final plan is due to be published in March 2025. The document is a mix of useful responses with some problematic comments supporting psychobehavioural approaches. Document | Thread UK Parliament Draft minutes of the meeting of the All Party Parliamentary group on ME held on 17th December include election of MP Jo Platt as chair and discussion of possible future actions for the group. Minutes | Thread Medscape Post-Exertional Malaise in Fatiguing Diseases: What to Know to Avoid Harmful Exercise Miriam Tucker reports from the American College of Rheumatology (ACR) 2024 Annual Meeting where the study "Prevalence of Post-exertional Malaise (PEM) in Adults with Rheumatic Diseases and Relationship with COVID19 Infection" (Michaud et al) was presented. The article has comments from Brayden P. Yellman, Todd Davenport, and Leonard Jason. Article l Thread SELF What to Know About ME/CFS, a Complex Condition That Involves Crushing Fatigue and So Much More An overview article on ME/CFS which also mentions Long Covid. Includes quotes from Dr. Charles Shepherd, honorary medical adviser to the ME Association, and Hector Bonilla, MD, director of Stanford’s ME/CFS clinic in California. Article | Thread Germany bild der wissenschaft have a paywalled overview article on Long Covid with interviews with Carmen Scheibenbogen and Ziyad Al-Aly. wissenschaft.de has also published a German interview with Christian Puta who heads the “'BioSig-PEM' research group, where six universities are researching the biological background of PEM. Article l Article l Thread Canada The Canary: A woman from Canada with severe ME has been approved for MAiD - but she wants to live About Marcia Doherty who has battled severe ME/CFS for decades which is under-recognised in British Columbia's medical system, leaving her without critical care. She therefore has to rely on crowdfunding to survive. Now she has been approved for Medical Assistance in Dying (MAiD), despite desperately wanting to live. She has launched a petition titled: Prevent Marcia's Avoidable Death. Article l Crowdfunding l Petition l Thread ............. Cochrane announcement Update on ‘Exercise therapy for chronic fatigue syndrome’ Announcement quoted in full: "In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding. Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered. Monday, December 16, 2024" Announcement | Thread 'New' version Cochrane has taken the unusual step of republishing the 2019 Larun et al review as a 'new' version dated 19th December 2024. The only change to the text is the addition of an editorial note which concludes: "The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019." 2024 review | Thread Hilda Bastian, appointed by Cochrane in early 2020 to lead an independent advisory group to assist the review writing group, posted on her Talkpage: "Brief message: Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps. On behalf of the Independent Advisory Group" Talkpage | Thread Science for ME A few days before this news of cancellation of the updated review, Science for ME members and committee wrote to the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review. Letter | Thread Science for ME petition update quotes the Cochrane announcement, and adds: "The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review." Please keep sharing the petition. Petition | Thread Trial by Error by David Tuller Cochrane Tells ME/CFS Patients to Go F-k Themselves Tuller provides a writeup of Cochrane's decision to abandon their commitment of updating their controversial review on exercise as ME treatment and concludes "Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both." Article l Thread .............. Useful resources Malnutrition Helen Baxter from The 25% ME Group recently gave a presentation at the Malnutrition Taskforce Learning Event on how dieticians and the wider MDT can help people with ME. The presentation has been uploaded on YouTube. Presentation l Thread ............. Coming events USA - NIH ME/CFS Advocacy Call Tuesday, January 14, 2:00 – 3:00 pm Eastern Time The webinar will include updates on ME/CFS-related research activities, a presentation by Vikram Chib, PhD, and Agostina Casamento-Moran, PhD, from Johns Hopkins University, and a Q & A session. Advance registration required. Announcement | Thread Bateman Horne Center and Solve M.E. Webinar Series Severe ME/CFS: Research (Part 4 of 4) Wednesday, January 15, 10 AM Pacific Time / 1 PM Eastern Time Advance registration required, see thread for times in your time zone. Announcement | Registration | Thread ............. Research news UK SequenceME: first of a kind genetic study "SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME ... The project builds on the DecodeME study, the world’s largest genetic study of ME led by the University of Edinburgh and Action for ME, which investigated whether common genetic variants were more likely to appear in those with ME than those without the condition. Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all." The project team are seeking £7 million to analyse the first 10,000 samples. Article | Thread Finland The Finnish Association of People with Physical Disabilities (The Invalidillitto) has conducted the first survey-based study among ME sufferers in Finland. It shows that ME/CFS significantly limits everyday function and that there is need for increased knowledge from social and health professionals. Report l Thread Demystifying Long COVID International Conference 2024 This conference was held in November 2024. The videos of the talks have now been made available on YouTube. Speakers include Daniel Altmann, Michael Peluso and Johan van Weyenbergh. Videos | Thread ............... Go to the next post for the section on research.
Week beginning 16th December 2024 Part 2 of 2 Research ME/CFS research Thesis Disenfranchising Talk and Communication Work of People with Chronic Overlapping Pain Conditions — Karly Quaack, Ph.D. "This dissertation explores important unanswered questions regarding interpersonal communication among individuals coping with chronic overlapping pain conditions. Specifically, in this study I examine how individuals with one or more chronic overlapping pain conditions (COPCs), such as fibromyalgia, experience negative talk from healthcare providers, and then I investigate the implications of that talk." Thesis | Thread Journal of Clinical Medicine Two Different Hemodynamic Responses in ME/CFS Patients with Postural Orthostatic Tachycardia Syndrome During Head-Up Tilt Testing — van Campen et al. "POTS patients with a limited HR increase may benefit from interventions aiming at increasing the circulating blood volume, while patients with a high heart rate may preferably treated with beta-blockers or ivabradine. This needs to be prospectively assessed." Article | Thread Long Covid research JAMA 2024 Update of the RECOVER-Adult Long COVID Research Index — Linda N. Geng et al. "Fatigue and postexertional malaise were common, suggesting some shared pathways with other infection–associated chronic conditions such as myalgic encephalomyelitis/chronic fatigue syndrome." Article | Thread Nature Pediatric Research Pediatric SARS-CoV-2 long term outcomes study (PECOS): cross sectional analysis at baseline — Montealegre Sanchez et al. "The presence of non-specific gastrointestinal symptoms appears to be a unique feature of pediatric infected participants." Article | Thread Trends in Endocrinology & Metabolism Skeletal muscle adaptations and post-exertional malaise in long COVID — Braeden T. Charlton et al. "In this opinion article we highlight intrinsic mitochondrial dysfunction, endothelial abnormalities, and a muscle fiber type shift towards a more glycolytic phenotype as main contributors to the reduced exercise capacity in long COVID." Article | Thread Clinical Nuclear Medicine Cognitive Impairment and Brain Metabolic Changes in Post-Acute Sequelae of COVID-19: Insights From an [: 18: F]FDG PET/CT Cohort Study — Rozenblum, Laura et al. "Significant hypometabolism was identified in regions previously identified in PASC" "The most substantial metabolism decreases were observed in the pons (5.5% decrease in the whole patient group vs controls) and right amygdala (−4.2%)." "A shorter interval between PET imaging and the acute phase of COVID-19 correlated with reduced glucose metabolism in the brainstem, thalamus, mesiotemporal lobe, frontobasal cortex, and olfactory bulb (P < 10−3)." Article | Thread Brain, Behavior, and Immunity COVID-19 may Enduringly Impact cognitive performance and brain haemodynamics in undergraduate students — McNeill et al. "participants in the covid group, during completion of cognitive tasks, exhibited less negative changes in oxygenated haemoglobin supply to the anterior prefrontal cortex. Interestingly though, the effect was specific to the right hemisphere, except when focusing in on those who reported brain fog (subjective cognitive impairment)" Article | Thread Journal of Clinical Medicine Endothelial Glycocalyx Anomalies and Ocular Manifestations in Patients with Post-Acute COVID-19 — Azar et al. "patients with post-acute COVID-19 have frequent ophthalmological anomalies mainly including ocular surface disease and retinal capillary non-perfusion. They seem to have normalization of the glycocalyx function but an abnormal [capillary density] and microvascular bed." Article | Thread The Journal of Clinical Investigation Long COVID is associated with lower percentages of mature, cytotoxic NK cell phenotypes — Tasha Tsao et al. "mature, cytotoxic CD56dim/CD16+ NK cell percentages were significantly lower in participants with LC compared to those who had fully recovered (P=0.037); a more pronounced significant reduction was observed in those with severe LC (P=0.036)." Article | Thread Nature Scientific Reports Effects of a symptom-titrated exercise program on fatigue and quality of life in people with post-COVID condition – a randomized controlled trial — Barz et al. "While exercise in our study has reduced the subjective fatigability during activities of daily living as evidenced by the reduction in FSS scores, it did not improve the [objective fatigability] in tasks requiring consecutive maximum exertion of effort such as the repeated HGS test. Our findings also allude to deconditioning not being the cause for objective fatigability in PCC." Article | Thread Vaccines Post-COVID-19 Vaccination and Long COVID: Insights from Patient-Reported Data — Quach et al. "This study analyzed two independent PASC cohorts and found that most individuals with PASC did not report a subjective change in their PASC symptoms after receiving post-COVID-19 vaccination(s)." Article | Thread Lancet: eClinicalMedicine Prevalence of post-acute sequelae of SARS-CoV-2 infection in people living with HIV: a systematic review with meta-analysis — Dimitra V. Pouliopoulou et al. "In this systematic review with meta-analysis of 8 studies, including 4489 participants, we found a high prevalence of Long COVID in adults with HIV (43%)." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 23rd December 2024 News, articles and advocacy UK Courts and Tribunals Judiciary Maeve Boothby O’Neill: Prevention of Future Deaths Report, October 8, 2024 Regulation 28 report to prevent future deaths The report was sent to some medical bodies and their responses have now been published. They are from NICE, NHS England, The Department of Health and Social Care, the Medical Research Council and the Medical Schools Council. Document with links to the report and responses | Thread Cochrane review Exercise Therapy for ME/CFS. Science for ME petition Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review Now has over 14,000 signatories, with over 1000 signing in the week since Cochrane announced cancellation of the new review process (see last week's news) Petition update How a review published in 2019 became a review published in 2024 "To be clear, the 2019 review has not been changed, it has not been updated. The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process... and the citation... A 2024 publication date is particularly misleading... The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report." Petition update | Petition thread | Review | Review thread Trial by Error by David Tuller Cochrane Continues Telling ME/CFS Patients to Go F-k Themselves On the lack of common sense behind Cochrane’s decision to abandon the update of its review on exercise as treatment for ME/CFS. "The whole mess has confirmed that Cochrane is not fit for purpose. If the organization is incapable of fulfilling its basic functions—producing reliable and accurate reviews—it is time to shut them down." Article l Thread Carmen Scheibenbogen is on Der Spiegel's list of 100 people who provide hope for 2025. She has been an ME researcher for many years and is now also working on Long Covid. She says to Spiegel that she had never thought it possible that a disease as serious as ME could exist whilst we know so little about it. Despite having met scepticism from colleagues, she says she has a responsibility to her patients. She has initiated several treatment studies in search of a breakthrough treatment. Der Spiegel's presentation (paywalled) l Thread Solve ME sponsored Long Covid Grand Rounds for the University of Rochester Medical Center. Dr. Brayden Yellman of the Bateman Horne Center presented diagnostic and management guidance for attendees. An op-ed publicizing the event was published in the Democrat and Chronicle newspaper. Article | Thread ABC News The pandemic's untold fertility story Long and good article on fertility as a neglected aspect of illnesses like Long Covid, ME/CFS and more. "... the overall lack of data means there are no evidence-based guidelines, leaving patients, their partners and healthcare providers unable to make informed decisions." Article l Thread .......... In memory Elizabeth London Aven 1978-2024 Elizabeth London Aven has died. In a farewell message on Facebook she wrote: "As many of you know, I've been very sick for a long time with serious chronic illnesses. My body has been shutting down for awhile now and I waited for as long as I could to leave". She encourages friends and family to "Do the things you've always wanted to do. The little things are not so little. Spend time with those you love. Make memories. Have fun for me!". Message shared on Bluesky l Thread (members only) .......... Research news Nature Medicine Declaration of Helsinki embraces health equity - Editorial The Declaration of Helsinki is a set of ethical principles for medical research involving human participants. The new update empowers ethics committees to require community engagement and equitable partnerships. Article | Thread .............. Research ME/CFS research Healthcare The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test — van Campen et al. "Two different patient groups with a normal HR and BP response during the tilt were identified: those with a CO and CBF in the normal range for HCs and those with an abnormal CO and CBF reduction during the tilt (91% of patients)." "In the latter group of patients, an almost 1:1 relationship between the CO and CBF reduction suggests the absence of compensatory vasodilation in the cerebral vasculature. This might indicate endothelial dysfunction in most ME/CFS patients" Article | Thread Journal of Cachexia, Sarcopenia and Muscle Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence — Carmen Scheibenbogen and Klaus J. Wirth "We collect, summarize and discuss the current state of knowledge for the key role of skeletal muscle pathophysiology. We try to explain which risk factors and mechanisms are responsible for a subgroup of patients with post COVID syndrome (PCS) to develop ME/CFS" Article | Thread Microbes & Immunity Microbial involvement in myalgic encephalomyelitis/chronic fatigue syndrome pathophysiology — Alejandro Borrego-Ruiz and Juan J. Borrego "In this paper, bacterial and metabolomic dysbiosis in subjects with ME/CFS are reviewed, and phenotypic, microbial, and metabolic biomarkers specific to individual cohorts are also identified. Furthermore, microbiome fluctuations or metabolic endotoxemia are proposed as possible disorder biomarkers." Article | Thread Immunological Medicine A novel frameshift mutation in ADCK1 identified in a case of chronic fatigue syndrome successfully treated with oral 5-ALA/SFC — Tomohiro Koga et al. "The identification of a novel heterozygous frameshift mutation in ADCK1 within this clinical context emphasizes the role of genetic predispositions in mitochondrial health." Article | Thread Long Covid research Radiology 1H and 31P MR Spectroscopy to Assess Muscle Mitochondrial Dysfunction in Long COVID — Lucy E. M. Finnigan et al. "The study findings indicate significant differences between participants with PCC and controls in terms of MR spectroscopic parameters linked to mitochondrial function and adenosine triphosphate (ATP) resynthesis, such as carnosine, phosphocreatine recovery time constant, and mitochondrial capacity." Article | Thread HLA Influence of HLA-G 3′ Untranslated Region Haplotypes and SNP +3422 Gene Variants as Host Genetic Factors on the Outcomes of SARS-CoV-2 Infection During Acute and Post-Acute Phases in a German Cohort — Hana Rohn et al. "In our cohort, the UTR-7 haplotype was present in 14% of Long-COVID patients, with a likelihood ratio greater than 10." Article | Thread Clinical Infectious Diseases Relationship Between Acute Severe Acute Respiratory Syndrome Coronavirus 2 Viral Clearance and Long Coronavirus 2019 (Long COVID) Symptoms: A Cohort Study — Herbert et al. "We observed that slower viral clearance rates during acute COVID-19 were associated with increased risk and more symptoms of long COVID" Article | Thread Social Science & Medicine Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK — Ridge et al. "In our development of the concept, medical ambivalence is the surface experience of patients receiving performative healthcare, pointing to deeper structural violence facing such patients." "often participants’ hopes of recognition are dashed, as they are met with cold disbelief and discrimination." Article | Thread Brain, Behavior, & Immunity - Health Clinic evaluation of cognitive impairment in post-COVID syndrome: Performance on legacy pen-and-paper and new digital cognitive tests — Patel et al. "a legacy cognitive test such as the ACE-III, designed for clinic assessment of Alzheimer’s disease and other dementia disorders, poorly captures the impairment associated with post-Covid syndrome" "Considerable evidence demonstrates that cognitive tests used in research, such as the LCCAB in this study, are more effective at detecting post-COVID cognitive impairment than standard clinical assessments." Article | Thread Journal of Allergy and Clinical Immunology Long-COVID - pathophysiology, current concepts and future directions — Chrysanthi Skevaki et al. "not all patients recover to their pre-COVID-19 functional level. 106 Especially patients who experience post-exertional malaise, a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), should be carefully evaluated, and pacing and energy management should be recommended." Article | Thread Cardiopulmonary Physical Therapy Journal Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum — McDuff, Kiera et al. "Consultants acknowledged the history of rehabilitation interventions causing harm to patients with long COVID, particularly with respect to the use of graded exercise therapy among people with PESE/PEM." "One of the methodological considerations that arose alongside the research priorities was to meaningfully include people with lived experiences with ME/CFS in research on long COVID." Article | Thread IJID Regions The relationship between long COVID, labor productivity, and socioeconomic losses in Japan: A cohort study — Konishi et al. "29.3% of all the patients continued to experience long COVID symptoms 1 year after diagnosis. At all three time points (3, 6, and 12 months after diagnosis), the long COVID persistent group showed a statistically significant difference in absolute presenteeism compared with the non-long COVID and long COVID recovered groups (P <0.01)." Article | Thread Clinical Infectious Diseases Post-COVID Condition Risk Factors and Symptom Clusters and Associations with Return to Pre-COVID Health—Results from a 2021 Multi-State Survey — Konkle et al. "Prevalence of PCC in this population-based sample was 29.9% for persons with SARS-CoV-2 infection, during the pre-delta variant period (March–December 2020); 77.2% of persons experiencing PCC had not returned to pre-COVID health within 8–60 weeks after infection." Article | Thread Nature Scientific Reports Transcutaneous electrical nerve stimulation for fibromyalgia-like syndrome in patients with Long-COVID: a pilot randomized clinical trial — Zulbaran-Rojas et al. "This study investigated the effect of Transcutaneous Electrical Nerve Stimulation (TENS) for fibromyalgia-like symptoms including chronic widespread musculoskeletal pain, fatigue, and/or gait impairment in twenty-five individuals with long-COVID. Participants were randomized to a high dose (intervention group, IG) or low dose (placebo group, PG) TENS device." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
