This thread has a Science for ME 'News in Brief' post for each week in April 2023 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 3rd April 2023 Part 1 of 2 News, articles and advocacy CDC - A recording of the ME/CFS Stakeholder Engagement and Communication (SEC) Call from Dec. 6, 2022, is now available. It includes a presentation by Dr. David Systrom titled, “Neurovascular Dysregulation During Exercise in ME/CFS & Long COVID”. Video | Thread The National The Long Covid Revolution Paywalled article by Fiona Lowenstein and Ryan Prior. "According to #MEAction, the group that organises #MillionsMissing, nearly half the current cases of long Covid meet the criteria for ME/CFS, and the majority of people with ME/CFS today are Covid-19 long-haulers". Article l Thread New Zealand group ME Support have produced an online resource to help people living with Long Covid. "This support tool is a series of videos with downloadable information for everyone who has, or thinks they might have, Long COVID. It will also be useful for people who have other post viral illnesses like ME/CFS." RNZ article | Online tool | Thread Podcast Long Covid (Dr. Asad Khan) The podcast It's Not In Your Head in conversation with long Covid sufferer Dr. Asad Khan. From the presentation: "After catching Covid on the frontline Dr. Asad Khan has endured numerous health issues which has opened his eyes to a level of suffering amongst patients dealing with chronic health issues". Podcast l Thread UK Isle of Man Today and TV program North West Tonight report on the IOM new ME/CFS and Long Covid service due to start in July. Article | TV clip | Thread Medscape Doctor's Checklist for Treating Long COVID Patients The article provides information including on PEM, dysautonomia and exercise intolerance. Article l Thread MSN The Hidden Struggle of Being Young and Chronically Ill A repost from The Mighty of a good text by Bethany Freeman about being young with ME. "All I ask is that next time, if you're young and one of your friends has to keep cancelling for mental or physical illness, give them the benefit of the doubt. And if you see someone young who is struggling, don't tell them they should be grateful for their youth, give them your care, because they know all too well what they're missing out on". Article l Thread Denmark The newspaper B.T. writes about severe ME patient Julie who recently got threatened with being sectioned by a doctor who doesn't belive in ME. The doctor refused to answer questions from the newspaper about the incident. The article also informs of the new NICE ME/CFS guidelines, and that the Danish Parliament in 2019 unanimously decided to improve conditions for Danish ME/CFS patients, but it was never followed through. Article l Thread WSWS A social and medical examination of Long COVID as a "mass disabling event" A long-read in a multi-part series by Frank Gaglioti. "This review, as part of the World Socialist Web Site's Global Worker's Inquest into the COVID-19 Pandemic, will document what is known about the science and impacts of Long COVID, the lessons that should have been drawn from previous post-viral illnesses, and the refusal of world capitalism to address this massive and ongoing social catastrophe". Part 1 l Part 2 l Part 3 l Part 4 l Thread Norway Dagsavisen writes about a family with two children who have very severe ME. The mother raises the problem of extreme sound sensitivity and ME, and that emergency alerts on iPhones from authorities would cause a deterioration for her sons. She received guidance from the civil defence on how to reserve one's iPhone from emergency alerts. Article l Thread NRK writes about Iselin who suffers from severe ME and needs help with, among other things, cooking. The assistance that was planned for her during Easter got cancelled from the municipality on very short notice, causing a lot of administration for Iselin which again led to her becoming bed bound for Easter. Article l Thread Dina Holst-Larsen (17) has written an excellent opinion piece for TV2 about being a child of a mother with severe ME, and about the lack of support to both her mother and the rest of the family. Opinion piece l Thread ............. Fundraising Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023 David Tuller has, via The University of California, Berkeley, launched a new fundraiser to continue his important work including the Trial By Error-series at Virology blog, commentaries for academic journals and stories for news organisations. The goal is to raise 65 000 USD during April. This will secure Tuller's work from June through December 2023. Fundraising l Thread #Raspberries4MECFS is a new social media fundraising challenge. This challenge encourages folks to donate to Dr. Alain Moreau's project (RAman SPectrometry Based biomarkER discoveRY for Myalgic Encephalomyelitis, aka RASPBERRY-ME) or to biomarker research being done by the The MortenGroup at Oxford. Website | Thread .............. Coming events CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call CDC program updates and guest speaker Dr. Jack Skarbinski. Wednesday, May 17, 3 pm Eastern Time Thread NIH ME/CFS Advocacy Call Updates on ME/CFS-related research activities and scientific presentation by Avik Roy, PhD, and Gunnar Gottschalk, PhD. Monday, May 1 from 12-1 pm Eastern Time Details | Thread ............. Continued in the next post.
Week beginning 3rd April 2023 Part 2 Research news and commentary UK DecodeME Recruitment is ongoing for this questionnaire and genetic study. Participation is online and by post and all people over 16 in the UK with an ME/CFS diagnosis are encouraged to participate. The researchers report that the first batch of DNA samples is being analysed. Tweet | Take part | Thread Redcap Survey Assessing Attitudes Toward Case Definitions - Jason et al. The research team of Leonard Jason at DePaul University, Chicago is conducted an online survey on case definitions and cardinal symptoms of ME/CFS. Survey | Thread NIH The Trans-NIH ME/CFS Working Group sent an email announcing "three funding opportunity announcements of interest to the ME/CFS research community". Thread Trial by Error by David Tuller "New JAMA Article Seeks to Revive the Zombie Case Definition for CFS from 1994" A critical take on a recent and problematic paper from Norway on long Covid prevalence in young adults. "... the authors have calculated maximal estimates from operationalising very loose criteria, generated further confusion with a problematic comparison group, and then argued that fears of prolonged disability are overblown". One of the conclusions in the study suggests that persistent symptoms in this age group are related to other factors than Covid-19 and that non pharmacological interventions should be investigated. Tuller comments: "These COFFI members are seeking to resuscitate a paradigm that has already been abandoned by major health agencies in the US, the UK and around the world". Article l Thread "What is Recovery Norway's Role in the JAMA Network Open Study of Long Covid in Young People?" In his second article about the JAMA paper on adolescents and Long Covid, Tuller asks why the paper didn't disclose its partnership with Recovery Norway, a group which is closely associated with the alternative treatment Lightning Process (LP) and co-founded by an LP coach. Article l Thread ............ Research Biomedical ME/CFS research Journal of Translational Medicine Natural killer cytotoxicity in ME/CFS: a multi-site clinical assessment of ME/CFS (MCAM) sub-study - Querec et al. NK cell counts and cytotoxicity in 174 ME/CFS, 86 healthy controls and 10 participants with other fatigue associated conditions were tested using an assay validated for samples shipped overnight. No between group differences or differences attributable to symptoms or other health factors were found. The abstract concludes: "These results indicate this assay is not ready for clinical implementation and studies are needed to further explore immune parameters that may be involved in the pathophysiology of ME/CFS." Paper | Thread Other ME/CFS research Scientific Reports Sex differences in post-exercise fatigue and function in myalgic encephalomyelitis/chronic fatigue syndrome - Friedberg et al. In this study, 22 females and 15 males with ME/CFS as well as 14 healthy controls underwent two six-min walk test. The study did not confirm hypotheses that females as compared to males would show slower exercise recovery on autonomic or self-report measures. Paper | Thread Social Epistemology Producing ME/CFS in Dutch Newspapers. A Social-Discursive Analysis About Non/credibility - De Boer & Slatman The authors analyzed Dutch newspaper articles on ME/CFS and conclude that patients are constructed as non-credible by being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent. Paper | Thread Medicina The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Grand et al. The authors propose a psychotherapeutic approach that takes into account two basic characteristics of ME/CFS: that it is a physical illness and that post-exertional malaise is a cardinal feature of the illness. Paper | Thread Long Covid research iScience SARS-CoV-2 awakens ancient retroviral genes and the expression of proinflammatory HERV-W envelope protein in COVID-19 patients — Benjamin Charvet et al. “Altogether, these results demonstrate that SARS-CoV-2 could induce HERV-W envelope protein expression and suggest its involvement in the immunopathogenesis of certain COVID-19-associated syndromes and thereby its relevance in the development of personalized treatment of patients.” Article | Thread Journal of Internal Medicine SARS-CoV-2 antibody dynamics over time and risk factors associated with infection and long COVID-19 symptoms in large working environments — Cecilie Bo Hansen et al. “Of all 1,030 seropositive individuals at 6-month follow-up, 319 (31.0%) reported having at least one persistent COVID-19 symptom. A significant difference was observed between the age groups (p=0.006), but no trend could be deducted. Furthermore, females reported more persistent symptoms than males (p=0.009). Overall, the most frequently reported symptoms in seropositive individuals were loss of smell and/or taste (180 individuals, 17.5%) and fatigue (158 individuals, 15.3%). The third most prevalent persistent symptoms reported were concentration difficulties (63 individuals, 6.1%) and headache (63 individuals, 6.1%).” Article | Thread Journal of Adolescent Health A Cross-Sectional Study of the Health of Emerging Young Adults in England Following a COVID-19 Infection — Fiona Newlands et al. “The study was matched to incorporate a comparator cohort of emerging adults who had experienced the pandemic, lockdown measures and social isolation but who had a negative PCR test.” “At the time of completing the questionnaire at a median of seven months after their test, 61.5% of test-positives and 47.5% of test negatives reported experiencing symptoms.” “The high proportion of test-negative participants experiencing symptoms in the months after their PCR-test suggests there may be a considerable burden of living through a pandemic.” Article | Thread European Heart Journal - Cardiovascular Pharmacotherapy Vascular mechanisms of post-COVID-19 conditions: rho-kinase is a novel target for therapy — Sykes et al. Hospitalised cases with significant cardiovascular comorbidity. “In laboratory studies, compared with controls, small peripheral arteries isolated from post-COVID-19 patients exhibited enhanced vasoconstriction and impaired endothelium-independent vasodilation restored in the presence of fasudil.” Article | Thread Preprint: MedRxiv Para-infectious brain injury in COVID-19 persists at follow-up despite attenuated cytokine and autoantibody responses — Benedict D. Michael et al. “In a novel low-inoculum mouse model of SARS-CoV-2, while viral replication was only consistently seen in mouse lungs, inflammatory responses were seen in both brain and lungs, with significant increases in CCL4, IFNγ, IL-17A, and microglial reactivity in the brain. Neurological injury is common in the acute phase and persists late after COVID-19, and may be driven by a para-infectious process involving a dysregulated host response.” Article | Thread ............. S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 10th April 2023 News, articles and advocacy USA The National Academies of Sciences, Engineering, and Medicine is calling for public comment on the U.S. Government working definition for Long COVID and related technical terms. The Online Public Comment Portal will be open until June 12, 2023. Website | Public Comment Portal | Thread USA Long Covid Help Gets Funding Push From Biden HHS, Lawmakers Bloomberg Law reports on the Biden administration's 2024 budget request which includes over $200 million for the HHS "to diagnose and treat people suffering long-term Covid symptoms." Article | Thread BMJ Opinion: Employers must provide better support to workers with long covid - S. Thompson Quotes from the recent TUC report and describes their own and colleagues' experiences with employers when they have Long Covid and other invisible illnesses. "Many people with long covid are frontline health and other key workers who worked through the worst of the covid-19 pandemic. That they should now be disbelieved or dismissed, instead of supported, is a great injustice." Article | Thread Germany BR24 has written an article about children, Long Covid, ME/CFS and a research project on pacing in Long Covid children. Article l Thread Stuff (New Zealand) Mothers' devastation as daughters develop the same debilitating illness that can mean years in bed "They are known as the “millions missing” – missing from their homes, the workforce, society and even their own families. Kristie Boland speaks to some of the silent sufferers of [ME/CFS], including two mums and their daughters." Article | Thread Varsity The invisibility of Long Covid has an even longer history Science student and Long Covid sufferer Rebecca Siddall takes a historical look at prejudice about post viral illness and hopes history will stop repeating itself with Long Covid. Article l Thread Democracy Now! The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency Interview with science writer and ME/CFS and Long Covid sufferer Ryan Prior on how the chronic illness community urges the Biden administration to do an Operation Warp Speed for Long Covid. Interview (video and transcript) l Thread Sweden Paywalled oped in Svenska Dagbladet by Karin Thunberg on ME and similarities to Long Covid. Quotes author and ME sufferer Karin Alvtegen who says no-one can be so stupid as to not believe ME and long Covid exist. Article l Thread ................ Fundraising Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023 David Tuller has, via The University of California, Berkeley, launched a fundraiser to continue his important work including the Trial By Error-series at Virology blog, commentaries for academic journals and stories for news organisations. The goal is to raise 65 000 USD during April. This will secure Tuller's work from June through December 2023. Fundraising l Thread ................ Coming events Solve M.E. Webinar: Navigating the World with Energy Limiting Disabilities Friday, April 21, 10 am Eastern Time This special Advocacy Week event will feature expert ME/CFS and Long Covid advocates sharing tips for overcoming personal, professional, and medical challenges. Announcement | Thread Solve M.E. Webinar: Effects of Long Covid and ME/CFS on Sleep Thursday, April 27, 11 am Pacific Time Dr. Elie Gottlieb, a neuroscientist from SleepScore Lab, will give a presentation followed by a live Q & A session. Announcement | Thread UK APPG All-Party Parliamentary Group on M.E. Annual General Meeting is on Wednesday 10 May at 2pm. It will include a one year-on review of the implementation of the NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation responded to by 106 ICB’s and NHS Trusts. The MEA has provided a template letter to invite your MP to attend. MEA article | Thread Germany On 11 and 12 May the Charité Fatigue Center (CFC) will host its 2nd international meeting on understanding diagnosing and treating ME/CFS. Speakers include Anthony Komarof, Leonard Jason, Carmen Scheibenbogen and Bhupesh Prusty amongst others. Article | Thread #MEAction announce a Millions Missing 2023 protest at the Washington Monument on May 12. An art installation, with rows and rows of cots to represent beds, will be set up to emphasize that the pandemic is not over for millions of Americans who have ME and Long COVID. A press conference will be live-streamed. See the website for how to participate since "much of the activism will be happening (from our beds) at home." Website | Thread ................ Research news The Cornell Center for Enervating Neuroimmune Disease has received a five-year, $9.5 million grant from the National Institutes of Health’s National Institute of Allergy and Infectious Disease. Article | Thread UK DecodeME More UK participants are needed for this research which involves a questionnaire and a genome wide association study(GWAS). The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet. Sharing | Take part | Thread The LongCovid Research Consortium is a global scientific collaboration to study Long Covid disease mechanisms. 22 projects are listed and described on the Poly Bio website. Website | Thread Podcast TLC Sessions 54 - Interview with molecular virologist Dr Bhupesh Prusty in which he talks about his latest research on ME/CFS and Long Covid. "In an introduction to his theories, this episode discusses viral reactivation, viral persistence and takes all of the symptoms and strands of Long Covid and puts forward a model that might explain all of it in one cohesive mechanism." Interview starts at 8 minutes. Article with link | Thread Germany At the Paediatric Centre of the University Hospital Würzburg, a targeted training programme for children and adolescents with ME/CFS is being launched as part of the research project "Bavarian Network for the Study of ME/CFS (BAYNET FOR MECFS)”. Article | Thread ............ Research commentary Trial by Error by David Tuller Further Thoughts on that JAMA Network Open Article and Estimates of Long Covid Prevalence Tuller's third critical article about a problematic JAMA paper on Long Covid prevalence in adolescents. "The study provided an example of how applying those criteria loosely is likely to yield a heterogeneous sample that includes an unknown number of people with something - but not necessarily the specific condition of interest. By then fashioning a problematic comparison group, the JAMA Network Open authors created an opportunity for themselves to question the links between an actual coronavirus infection and subsequent disabling symptoms". Article l Thread Why Did the NIH List an Award for Research on Cancer-Related Fatigue on Its List of Spending on ME/CFS? In the US National Institutes of Health's overview of estimated funding for CFS research during fiscal 2022, there was a 25% reduction of funding and the largest allocation went to a research project not into CFS, but cancer-related fatigue. This is not looking kosher, says Tuller. Article l Thread Long Covid Advocacy Is the “greatest medical scandal of the last century" being repeated for a generation of children? Parts 1 and 2 Part 1 spells out concerns, submitted in a formal complaint, about the UK CLoCK study of paediatric Long Covid which takes a psychosocial approach. Part 2 discusses the unsatisfactory reply received from the researchers. Part 1 | Part 2 | Thread ................ Research Long Covid research International Journal of Infectious Diseases Systematic review with meta-analysis of active herpesvirus infections in patients with COVID-19: Old players on the new field — Banko et al. “Due to shown high prevalence of active HHVs infection in SARS-CoV-2 positive patients, up to 41%, and 6 times higher chance for active EBV infection in critically ill COVID-19 patients than in non-COVID-19 controls, reactivation of already harbored pathogens in COVID-19 patients should represent an emerging issue.” Article | Thread CHEST Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-Acute Sequelae of SARS-CoV-2: More in Common Than Not? — Phillip Joseph et al. “Cardiopulmonary exercise testing (CPET) reveals perturbations related to systemic blood flow and ventilatory control associated with acute exercise intolerance in PASC, which are not typical of simple detraining. Hemodynamic and gas exchange derangements in PASC have substantial overlap with those observed with ME/CFS, suggestive of shared mechanisms.” Article | Thread Nature Scientific Reports Cerebral hypoperfusion in post-COVID-19 cognitively impaired subjects revealed by arterial spin labeling MRI — Ajčević et al. “The results showed a significant hypoperfusion in a widespread cerebral network in the post‐COVID‐19 group, predominantly affecting the frontal cortex, as well as the parietal and temporal cortex” “These findings support the hypothesis of a large network dysfunction in post‐COVID subjects with cognitive complaints.” Article | Thread JAMA Network Open Definition of Post–COVID-19 Condition Among Published Research Studies — Ubonphan Chaichana et al. “We found substantial heterogeneity in defining PCC in the published studies, with almost two-thirds (65.4%) not complying with the definitions from the NICE, CDC, or WHO. This study highlights major issues in comparing interventions and outcomes between these reported studies in PCC due to differences in definition” Article | Thread eClinicalMedicine Multiomic characterisation of the long-term sequelae of SARS survivors: a clinical observational study — Kuan Li et al. “We performed a clinical observational study on 14 health workers who survived SARS coronavirus infection between Apr 20, 2003 and Jun 6, 2003 in Haihe Hospital (Tianjin, China).” “Plasma multiomics analysis indicated an abnormal metabolism of amino acids and lipids, promoted host defense immune responses to bacteria and external stimuli, B-cell activation, and enhanced cytotoxicity of CD8 + T cells but impaired antigen presentation capacity of CD4 + T cells.” Article | Thread Canadian Journal of Cardiology Cardiovascular Considerations in the Management of People with Suspected Long COVID — Kieran L. Quinn et al. “When assessing patients with these symptoms, clinicians need to keep in mind Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), postexertional malaise and post-exertional symptom exacerbation (PEM/PESE), cardiac dysautonomia such as Inappropriate Sinus Tachycardia (IST), and Postural Orthostatic Tachycardia Syndrome (POTS), and occasionally Mast Cell Activation Syndrome (MCAS).” Article | Thread eClinicalMedicine Efficacy and tolerability of an endogenous metabolic modulator (AXA1125) in fatigue-predominant long COVID: a single-centre, double-blind, randomised controlled phase 2a pilot study — Lucy E.M. Finnigan et al. “Changes in skeletal muscle phosphocreatine recovery time constant (τPCr) and 6-min walk test (6MWT) did not significantly differ between treatment (n = 21) and placebo group (n = 20).” Article | Thread Nature Communications Data-driven analysis to understand long COVID using electronic health records from the RECOVER initiative — Zang et al. “With a high-throughput screening pipeline based on propensity score and inverse probability of treatment weighting, we identified a broad list of diagnoses and medications which exhibited significantly higher incidence risk for patients 30–180 days after the laboratory-confirmed SARS-CoV-2 infection compared to non-infected patients.” Article | Thread .................. S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 17th April 2023 News and articles Austria A motion for a resolution for better care for ME/CFS patients was tabled in the Health Committee of the Austrian Parliament. Article | Thread Germany The final report by IQWiG on ME/CFS has been sent to the contracting agency and is expected to be published in mid-May. Thread Sweden This week the Minister of Social Affairs and the Minister of Health informed in a press conference of the government's mission related to Long Covid. Missions are to produce a guideline, a compilation of research, and investigate possibilities for a national knowledge centre. Forum member Mango has provided a summary and relevant links in thread. Press release l Thread Sweden Lawyer Jimmy Laine encourages patients, including ME patients, to seek compensation after having to undergo a new model from the Swedish Social Insurance Agency for assessment of an individual's capacity for work which may lead to deterioration. Article l Thread CDC report: Chronic Pain Among Adults - United States, 2019-2021 "Among all chronic medical conditions reported, the age-adjusted prevalence of chronic pain and high-impact chronic pain was highest among adults with a history of myalgic encephalomyelitis/chronic fatigue syndrome (70.0% and 43.8%, respectively) and dementia (54.9% and 34.2%, respectively)." Report | Thread Trial by Error by David Tuller Some Recent Long Covid Articles from STAT/MuckRock, The Atlantic, and Nieman Reports Tuller highlights three recent and topical Long Covid articles: One from STAT/MuckRock on the Recover initiative titled "The NIH has poured $1 billion into long Covid research - with little to show for it". Article l Thread Another article is from reporter Ed Yong from The Atlantic. "In this new piece, with his usual intelligence and lucidity, Yong laments the current efforts to minimise the individual and societal costs of long Covid. He offers some thoughts as to why many people do not understand or recognise the serious impact of the condition." Article l Thread The last article is an opinion piece at Neiman Reports by Kendra Pierre-Loius criticising journalists of downplaying Long Covid. Opinion piece | Tuller's Article l Thread ................ Fundraising Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023 Only a week left to contribute to Dr David Tuller's fundraiser to continue his important work including the Trial By Error-series at Virology blog, commentaries for academic journals and stories for news organisations. The goal is to raise 65 000 USD during April. This will secure Tuller's work from June through December 2023. Fundraising l Thread ................ Advocacy USA Advocacy action from Solve M.E.: "Ask your Members of Congress to support the CARE for Long COVID Act!" An automated form will send emails to your senators and your representative. Form | Thread USA The National Academies of Sciences, Engineering, and Medicine is calling for public comment on the U.S. Government working definition for Long COVID and related technical terms. The questionnaire is open until May 12. The Online Public Comment Portal will be open until June 12. People around the world can take part. Website | Questionnaire | Public Comment Portal | Thread #MEAction has a pillowcase decoration project for Millions Missing 2023 art installation on May 12. This project is not just for those in the USA - anyone from any country can send in a pillowcase. Pillowcases must be received by May 10. Details | Thread ................... Coming events USA NIH ME/CFS Advocacy Call May 1st from 12 – 1 pm ET. "The webinar will include updates from NIH & a scientific presentation by Avik Roy, PhD, and Gunnar Gottschalk, PhD, investigators at Simmaron Research and the University of Wisconsin-Milwaukee." Tweet | Thread Norway The research institutions Fafo and Sintef who are researching ME-patients and the health care services, invite to a workshop to discuss how their data collection can contribute to highlight the situation for severe ME patients and their carers. The event takes place 4th of May and will also be streamed. More information l Thread ................. Research news Australia Griffith University Largest medical research grant to help ME/CFS and Long COVID research The team led by Professor Sonya Marshall-Gradisnik has received a $6.4 million grant from the Stafford Fox Medical Research Foundation to further their studies of the pathology of ME/CFS and Long COVID, including a clinical trial of Low Dose Naltrexone. Article | Thread USA Simmaron Research "Dr. Avik Roy PhD and Dr. Gunnar Gottschalk PhD have been awarded a competitive R21 grant from the National Institutes of Health for their study "ATG13: A new player in ME/CFS." This grant will fund our ground-breaking work in autophagy in ME/CFS." (see coming events) Thread UK DecodeME This large questionnaire and genetic study of ME/CFS has already attracted thousands of participants but needs many more if it it to reach its target of 25,000 genetic samples. Clinicians, patients and supporters are needed to help spread the word. Sharing | Take part | Thread The Netherlands Lou Corsius has decided to terminate his membership of the sounding board group on the ME/CFS biomedical research program as he does not agree with the decisions being taken. The government agency ZonMw said that it will announce its funding decision on 25 April. Announcement here and here | Thread ICanCME Research Network (Canada) has announced a call for proposals, part of the 2023/2024 New Frontier ME Discovery Grant Program. Details | Thread UK: Conference: MitOX 2023 was held on Friday. Talks covered a range of mitochondria research. There was a poster presentation entitled "Mitochondrial Dysfunction with Aberrant Expression of Endogenous Retroviral Sequences in ME/CFS by Karen Giménez-Orenga1, Elisa Oltra. They reviewed research on HERVs (human endogenous retroviruses) and their relevance to ME/CFS. Link | Thread .................. Research commentary Trial by Error by David Tuller Professors Crawley, Chalder & Colleagues Investigate Paediatric Long Covid in Yet Another Study with a Stupid Acronym "The CLoCK study is only the latest example of questionable work connected to this bunch. It seems largely based on long-held but unproven assumptions that unexplained symptoms are mainly caused by psychosocial factors". Article l Thread Medicine, Health Care and Philosophy The biopsychosocial model: Its use and abuse - Alex Roberts This article criticises the biopsychosocial model, saying it "simply posits that when people fall ill, it is because some subset of all possible causal factors somehow interacted to make them ill. The model is thus vague, all-inclusive, and lacks meaningful scientific content." Article | Thread .................. Research Long Covid research Trends in Endocrinology & Metabolism Long COVID: pathophysiological factors and abnormalities of coagulation — Simone Turner et al. “In this review, we have described the multiple pathophysiological factors at play in Long COVID and their interactions with the coagulation system and endothelium.” Article | Thread NeuroImmune Pharmacology and Therapeutics Abnormal brain diffusivity in participants with persistent neuropsychiatric symptoms after COVID-19 — Huajun Liang et al. “Compared to the controls, recovered COVID participants with persistent neuropsychiatric symptoms had […] restricted diffusivity in several white matter regions and higher mean diffusivity in the left amygdala. These microstructural abnormalities in the white matter were contrary to what we initially hypothesized. These findings may reflect enhanced myelination…” Article | Thread Brain Communications Neural dysregulation in post-COVID fatigue — Baker et al. “In comparison to age and sex matched volunteers without fatigue (n=52), we show underactivity in specific cortical circuits, dysregulation of autonomic function, and myopathic change in skeletal muscle. Cluster analysis revealed no sub-groupings, suggesting post COVID fatigue is a single entity with individual variation, rather than a small number of distinct syndromes.” Article | Thread Journal of Korean Medical Science Gut Microbiota Dysbiosis Correlates With Long COVID-19 at One-Year After Discharge — Zhang et al. “Compared with [healthy controls], symptomatic [recovered patients] had obvious gut microbiota dysbiosis including significantly reduced bacterial diversities and lower relative abundance of short-chain fatty acids (SCFAs)-producing salutary symbionts such as Eubacterium hallii group, Subdoligranulum, Ruminococcus, Dorea, Coprococcus, and Eubacterium ventriosum group.“ Article | Thread PLOS Medicine Prevalence and characteristics of long COVID in elderly patients: An observational cohort study of over 2 million adults in the US — Kin Wah Fung et al. “We observed that about 30% of hospitalized COVID-19 patients developed long COVID. In a similar proportion of patients, long COVID-like symptoms (long Flu) can be observed after influenza, but there are notable differences in symptomatology between long COVID and long Flu. The impact of long COVID on healthcare utilization is higher than long Flu.” Article | Thread Frontiers in Immunology Elevated circulating monocytes and monocyte activation in COVID-19 convalescent individuals — Park et al. “In summary, our data indicate that systemic monocyte alteration continues within COVID-19 convalescents with pulmonary symptoms, which is also found in COVID-19 convalescents with no residual symptoms. Also, COVID-19 convalescents exhibit activated monocyte phenotypes, denoted by CD169 expression, and this activated phenotype is associated with poor lung function and increased proinflammatory cytokines.” Article | Thread Preprint: MedRxiv Risk of new-onset Long Covid following reinfection with SARS-CoV-2: community-based cohort study — Matthew L Bosworth et al. “However, there remains some risk of new-onset Long Covid after a second infection, with around 1 in 40 of those ≥16 years and 1 in 165 of those <16 years reporting Long Covid after a second infection.” Article | Thread ................... S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 24th April 2023 Part 1 of 2 News and articles World ME Alliance has released a new 2-page fact sheet on ME with a particular focus on post-exertional malaise (PEM). Available in four languages. Article | Thread The US ME/CFS Clinician Coalition has posted a message on their website urging doctors to "consider ME/CFS in the differential diagnosis of Long COVID, particularly when post-exertional malaise (PEM) is present." They've posted a consensus statement with more details. Website | Statement | Thread Australian Government "The House of Representatives Standing Committee on Health, Aged Care and Sport has today published the report for its inquiry into long COVID and repeated COVID infections, entitled Sick and tired: Casting a long shadow." A Guardian article, titled: "Albanese government pledges $50m for long Covid research as inquiry calls for action", summarises the report which includes recommendations for a national database on Covid and Long Covid, research, clinical education and an advisory body on air quality. ME/CFS is described as a separate condition which also needs research and patient support. Report | Guardian | Thread Scotland The Scottish Government Covid-19 Recovery Committee has produced an 85 page report on Long Covid. Sections cover Awareness and recognition, including stigma, medical education and access to benefits; Therapy and rehabilitation; and Study and Research. An STV news report is headed "Urgent action needed to tackle stigma around long Covid, report warns". Report | Article | Thread Professor Jonas Bergquist was guest on a Swedish morning TV show and talked about research into Long Covid and ME. He says post viral disease is not a new phenomenon and that more selective imaging techniques indicate brain inflammation. Forum member Mango has provided a summary in thread. TV segment l TV segment with Q&A l Thread The Conversation Article about medical gaslighting of Long Covid patients, how it presents a barrier to treatments and how to better the situation. Also mentions gaslighting has been documented by patients with other conditions such as ME/CFS. Article l Thread National Geographic For some long COVID patients, exercise is bad medicine Excellent article by Kaelyn Lynch on Long Covid, PEM, ME, rehabilitation and research into this. Interviews with researchers as Mark VanNess, David Putrino, Brayden Yellman, David Systrom. Putrino: "If exercise is medicine, you should treat it like medicine. You should understand what the contraindications are, who might have adverse effects of the medicine, and how to dose the medicine effectively for each person". Article l Thread The Conversationalist Long Covid Skepticism is a Slippery Slope by Anna Hamilton "Just because medical science hasn't discovered the answers to long Covid, CFS/ME, fibromyalgia, and other chronic illnesses so far does not mean that there at not answers - nor does it definitively mean that these illnesses are psychosomatic". Article l Thread Mike Harley has completed yet another marathon to raise funds and awareness for Invest in ME and biomedical research. This time the marathon was in Bergen, Norway. Ahead of the trip he spoke to Kristine Nilsen Oma and Luna Anette Løndal about living with ME in Norway. He also did a podcast with the Norwegian ME Association. Article l Podcast l Thread Europe This year's conference of the European Association of Psychosomatic Medicine in June has a session entitled "CFS/ME: Controversy and communication following the 2022 UK NICE guidelines". Speakers include well known critics of the guideline, Per Fink and Michael Sharpe, Lightning Process promoter Live Landmark, and a talk "Debate and misinformation in the press and on social media - can we do anything about it?" [note: the ME/CFS NICE guideline was published in 2021] Conference program | Thread ............. Fundraising David Tuller On the final day of fundraising to support Dr David Tuller's post at the University of California Berkeley, the target of $65,000 looks likely to be reached. This will enable him to continue for another 6 months his important work highlighting the many problems with the psychosomatic approach to ME/CFS and related conditions. Donate | Thread ............. ME Awareness day/week/month May 2023 New Zealand ANZMES World ME Day: "Throughout the day (May 12) we showcase interviews with Dr. Lynette Hodges, Dr. Olivier Caunes, Dr. Cathy Stephenson, and members of the ME/CFS and long COVID community." They will also provide "a new video resource on PEM" and share members' stories. Press release: "World ME Day Raises Awareness Of Devastating Symptom Impacting Millions Post-COVID" ANZMES announcement | Press release | Thread #MEAction has a pillowcase decoration project for Millions Missing 2023 on May 12. The demonstration will be in Washington, DC, but anyone from any country can send in a pillowcase. Pillowcases must be received by May 10. Details | Thread #MEAction Scotland and #MEAction UK announced a photo campaign for Millions Missing 2023. Post a photo that shows "your view with ME" or "the spaces people with ME are missing from" with the hashtag #CanYouSeeMENow Details | Thread ............. Other coming events NIH ME/CFS Advocacy Call Webinar with updates on ME/CFS research activities and scientific presentation by Avik Roy, PhD, and Gunnar Gottschalk, PhD. Advance registration required. Monday, May 1 from 12-1 pm Eastern Time Details | Thread ............ For sections on research see Part 2 below.
Week beginning 24th April 2023 Part 2 of 2 Research news USA NIH has announced the members of the ME/CFS Research Roadmap Working Group. This group will will meet regularly in 2023 to identify research priorities and develop a roadmap for ME/CFS research. Details | Thread The Netherlands The first grants of the ME/CFS research program has been announced in the Netherlands. Two consortia will be funded. The 'ME/CFS Lines' consortium is led by Prof Rosmalen. It will receive 4.4 million euro and include 4 research projects. The Dutch ME/CFS Cohort and Biobank (NMCB) consortium is led by Jos Bosch, will receive 7.2 million euro and include 6 studies. Patients have expressed disappointment that funding is allocated to Prof. Rosmalen, who has promoted a psychosomatic view on ME/CFS in the past. Article | Thread Trial by Error by David Tuller Dutch Agency to Announce ME/CFS Research Awards After Committee Resignation of Key Patient Advocate About the resignation of patient advocate Lou Corsius from a sounding-board at ZonMw, an independent Dutch research organisation. Corsious says he has "fully lost the trust" he had in the organisation. Article l Thread UK DecodeME "20,000 pwME have now completed the questionnaire stage of the DecodeME study, providing us with a wealth of information about the lived experience of ME/CFS to help us understand more about the illness. We still need more participants! You can still take part. And help us spread the word!" Sharing | Take part | Thread NIHR has a brief item on DecodeME on its 'Be part of research' spring listing titled "Join the world’s largest myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) study". NIHR | Thread USA The FDA held a "Public Meeting on Patient-Focused Drug Development for Long COVID" on April 25. A recording of this meeting is available (no captions or transcript yet). Announcement | Video | Thread USA Department of Veterans Affairs (VA) and NIH have launched a study to gain a better understanding of the chronic symptoms of Gulf War Illness. The announcement mentions a procedure which "has been used to explore the mechanisms of other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome." Details | Thread ........... Research ME/CFS research Journal of Translational and Clinical Science Exploring the Genetic Contribution to Oxidative Stress in ME/CFS - Hampilos et al. This study by Maureen Hanson's team at Cornell University used 20 people with ME/CFS and 11 controls. "This study found that the presence of a C>T SNP in GPX1 is associated with lower mean GSH levels and, hence, brain oxidative stress, in ME/CFS patients. If validated in a larger cohort, this finding may support targeted antioxidant therapy based on their genotype as a potentially effective treatment for patients with ME/CFS." Abstract | Thread Preprint (not yet peer reviewed) Typing myalgic encephalomyelitis by infection at onset: A DecodeME study - 2023 Bretherick et al An analysis of questionnaire data from the first 17,074 participants in the DecodeME study. Findings include "...being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity." The authors conclude: "This revealed that people with a ME/CFS diagnosis are not a homogeneous group, as clear differences exist in symptomatology and comorbidity." Preprint | Thread Preprint (not yet peer reviewed) A Mixed Methods System for the Assessment of Post Exertional Malaise in Encephalomyelitis/Chronic Fatigue Syndrome - Stussman et al 10 people with ME/CFS and 9 healthy controls were assessed at 6 time points before and over 72 hours after a single CPET used to provoke PEM. Assessment was by visual analogue scales (VAS) for 7 symptoms and structured qualitative interviews (QI). The authors conclude: "QIs were able to capture changes in PEM severity and symptom quality over time in all the ME/CFS volunteers, even when VAS scales failed to do so. Information collected from QIs also improved the performance of VAS. Measurement of PEM can be improved by using a quantitative-qualitative mixed model approach." Preprint | Thread Preprint (not yet peer reviewed) Exosome-associated Mitochondrial DNA is Elevated in Patients with ME/CFS and Stimulates Human Cultured Microglia to Secrete IL-1β - Theoharides et al. A very small study with pooled samples from each group (patients and controls). Preprint | Thread Frontiers in Rehabilitation Sciences Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review - Pollack et al. Reviews past research and suggests avenues for future research. Article | Thread Research Square Socioeconomic determinants of myalgic encephalomyelitis/chronic fatigue syndrome in Norway: a registry study - Hilland & Anthum This preprint used registry data from Norway to investigate how income and education level influence the risk of being diagnosed with ME/CFS. Article | Thread Frontiers in Psychiatry The framework for systematic reviews on psychological risk factors for persistent somatic symptoms and related syndromes and disorders (PSY-PSS) - Hüsing et al. The authors propose a framework that includes search terms to identify studies in relevant patient groups with persistent somatic symptoms (PSS) and relevant psychological factors. Article | Thread Scandinavian Journal of Occupational Therapy Associations between daily routines and social support among women with chronic fatigue syndrome - Rosenberg et al. The authors studied 110 women with CFS and 64 that were not diagnosed with CFS. The first group reported lower participation in instrumental activities of daily living and work and less social support than participants who did not have CFS. Article | Thread Journal of Health Psychology Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway - Kielland et al. The authors surveyed 660 fatigue patients in Norway using DePaul University algorithms to estimate Canadian and Fukuda criteria. Patients on average perceived most interventions as having low-to-negative health effects. Article l Thread Long Covid research Pulmonary Circulation Proteomic profiling demonstrates inflammatory and endotheliopathy signatures associated with impaired cardiopulmonary exercise hemodynamic profile in Post Acute Sequelae of SARS-CoV-2 infection (PASC) syndrome — Inderjit Singh et al. “PASC patients with EO2peak‐severe demonstrated elevated protein markers that are associated with persistent inflammation and endotheliopathy. Among these include ANGPT2 and IL‐12, both of which are multifaceted factors with pro‐inflammatory and micro-vascular regulatory properties. Elevated ANGPT2 has been associated with micro‐vascular regression and systemic capillary rarefaction has been described in PASC.” Article | Thread BMC Infectious Diseases Serological response to vaccination in post-acute sequelae of COVID — Joung et al. “We found evidence of persistent immune activation that differentiates individuals with PASC from COVID-recovered individuals. In particular, we observed that individuals with PASC mounted a higher IgG-S [anti-spike] antibody response to vaccination than COVID-recovered individuals; this difference was sustained over time.” Article | Thread Neurology Changes in Brain Activation Pattern During Working Memory Tasks in People With Post-COVID Condition and Persistent Neuropsychiatric Symptoms — Linda Chang et al. “[Post-COVID condition] participants with neuropsychiatric symptoms demonstrated compensatory neural processes with greater usage of alternate brain regions, and reorganized networks, to maintain normal performance during [working memory] tasks.” Article | Thread Preprint: MedRxiv Symptom persistence and biomarkers in post-COVID-19/chronic fatigue syndrome – results from a prospective observational cohort — A. F. Legler et al. “We assessed symptom severity and various biomarkers at three time points post infection (3-8 months (mo), 9-16mo, 17-20mo) in 106 PCS patients with moderate to severe fatigue and exertional intolerance. A subset of patients fulfilled diagnostic criteria of myalgic encephalomyelitis/chronic fatigue syndrome (PCS-ME/CFS) based on the Canadian Consensus Criteria.” Article | Thread ........... S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
