This thread has a Science for ME 'News in Brief' post for each week in November 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 4th November 2024 News, articles and advocacy A life hidden - The Trouble With Recovery Stories by Naomi Whittingham Wise reflections on why media recovery stories also have difficult and complicated aspects to them: "Recovery stories will very often claim that a shift in mindset, or an increase in activity levels, was critical. But the silent story for most of us is that we “decided to get better” but couldn’t; started doing a little more each day but had a relapse; tried yet another treatment and found it wanting; and then, having lost everything, built the best life we could from the ruins." Article l Thread UK Byline Times The Government’s Final Delivery Plan ‘Should be a Watershed Moment for ME and Long COVID sufferers’ - Tamsin Flower A spokesman for the DHSC said the focus will be on research, education and improving care for people with ME/CFS. Article | Thread UK ME Association talk by Dr Charles Shepherd to the Stockport ME group about ME/CFS and Long Covid in the UK. Transcript PDF | Video (duration 30 minutes) | Thread UK Nursing Times Why more nurses are needed in ME and long Covid services Clinicians and people with ME/CFS share their points of view on ME/CFS and Long covid services. Article | Thread USA - Massachusetts ME/CFS & FM Association A recording of this group's 2024 annual meeting, held on October 26, is now available. It includes a presentation by Patricia Fennel called A Powerful Paradigm for Living with Chronic Illness. Video | Thread ........... Coming events Norway ME/CFS and Long Covid - Digging Deeper Conference in Stavanger for health care personnel 7th May 2025 and for everyone 8th May. Speakers: Kristian Sommerfelt, Øystein Fluge, Karl Johan Tronstad, David Systrom, Carmen Scheibenbogen, Brian Hughes, Rob Wüst, Michelle Bull, David Putrino, Trude Schei, Anniken Aase Sommerfelt. Host: Ola Didrik Saugstad. Website l Thread USA Bateman Horne Center - Free Online Support Groups Tuesday, November 12, 1:00 - 2:00 PM Mountain Time Topic: Pain Tools Amidst Difficult Moments Tuesday, November 19, 1:00 - 2:00 PM Mountain Time Topic: Navigating the Healthcare Industry Advance registration required, see thread for times in your time zone. Event Calendar | Thread USA #MEAction - Caregiver Support Call Saturday, November 16, 3:30 - 4:30 PM Eastern Time Zoom call for caregivers of people with ME, Long Covid, and associated conditions. See thread for time in your time zone. Announcement | Thread ........... Research news PolyBio Research Foundation Fall 2024 Symposium Series of 10 minute talks on Long Covid. The recording is expected to be on their YouTube Channel shortly. Some live blogs and summaries have been provided. Schedule | The Sick Times | PatientLed | Thread Netherlands The 14 projects funded by the ZonMw Long Covid program in the Netherlands has been published. It looks quite impressive. The total budget has been increased from 6 to 11.4 miljoen euros. A short description of each project can be found on the ZonMw website. Article | Thread UK Action for ME Genetics Centre of Excellence webinar. The recording is now available (duration 1 hour). UK ME/CFS researchers including Professors Chris Ponting of the Edinburgh Genetics Centre of Excellence and Simon Carding of the Norwich Quadram Centre discuss current and future plans to expand patient involvement and attract new researchers. Video | Thread ........... Research ME/CFS research Preprint: MedRxiv Relationship between plasma cortisol concentration and Long COVID symptoms in the post-acute phase of COVID-19: a cross-sectional study and recommendations for future research — Thomas Dalhuisen et al. "We found that compared to people who had fully recovered from COVID-19, those with Long COVID tended to exhibit cortisol concentrations that were lower between 8-9 AM but higher between 9-10 AM." "Our observation of what may be a different pattern of cortisol secretion in those with ME/CFS-like Long COVID is suggestive of a delayed morning cortisol peak." Article | Thread Asian Journal of Medical Sciences A cross-sectional study on cardiac autonomic functions and inflammatory markers in chronic fatigue syndrome — Ayasha Nishad et al. "Our research indicates a substantial correlation between autonomic dysfunction and inflammatory activity, as well as the severity of CFS." Article | Thread Preprint: MedRxiv Post-SARS-CoV-2 Onset Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Symptoms in Two Cohort Studies of COVID-19 Recovery — Armaan Jamal et al. "The co-occurrence of ME/CFS symptoms and long COVID suggests that SARS-CoV-2 is a cause of ME/CFS." Article | Thread Long Covid research International Journal of Molecular Sciences Neutrophil Elastase, Neuron-Specific Enolase, and S100B Protein as Potential Markers of Long-Term Complications Caused by COVID-19 in Patients with Type 2 Diabetes Mellitus (T2DM) and Advanced Stage of Diabetic Nephropathy (NfT2DM)—Observational Studies — Rabczyński et al. "It was found that elevated levels of NE and NSE were significantly more common (p < 0.05) in patients with NfT2DM after recovering from COVID-19 compared to the other groups, while elevated levels of S100B were significantly more frequently observed in patients with T2DM after recovering from COVID-19 (p < 0.05)." Article | Thread Brain, Behavior, and Immunity SARS-CoV-2 variants mediated tissue-specific metabolic reprogramming determines the disease pathophysiology in a hamster model — Kaur Sardarni et al. "these variants induce distinctive metabolic regulations in various tissues and elicit proteomic alterations in the brain. The observed dysregulation of postsynaptic proteins, coupled with the presence of markers linked to neurodegenerative disorders, underscores the potential neurological repercussions of COVID-19." Article | Thread The Journal of Clinical Investigation A six-year study in a real-world population reveals an increased incidence of dyslipidemia during COVID-19 — Valentina Trimarco et al. "During the COVID-19 period, we detected an increased risk of developing any dyslipidemia when compared with the pre–COVID-19 triennium (OR = 1.29; 95% CI, 1.19–1.39)." Article | Thread Lancet: eClinicalMedicine Incidence of post-acute COVID-19 symptoms across healthcare settings in seven countries: an international retrospective cohort study using routinely-collected data — Junqing Xie et al. "This is the first international study of the epidemiology of post-acute COVID-19 symptoms using the WHO-listed symptoms." Article | Thread Vaccine Effect of COVID-19 vaccination on the risk of developing post-COVID conditions: The VENUS study — Kim et al. "this study of a large-scale Japanese cohort provides real-world evidence that recent COVID-19 vaccination can reduce the incidence and risk of a wide range of post-COVID-19 conditions." Article | Thread GeroScience Novel biomarkers of mitochondrial dysfunction in Long COVID patients — Szögi et al. "Our research employed transmission electron microscopy to reveal distinct mitochondrial structural abnormalities in Long COVID patients, notably including significant swelling, disrupted cristae, and an overall irregular morphology, which collectively indicates severe mitochondrial distress." Article | Thread The Medical Journal of Australia Beyond acute infection: mechanisms underlying post‐acute sequelae of COVID‐19 (PASC) — Adhikari et al. "Immunothrombosis and neurological signalling dysfunction emphasise the complex interplay between the immune system, blood clotting, and the central nervous system in the context of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) infection." Article | Thread JAMA Dermatology Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 — Yeon-Woo Heo et al. "This retrospective cohort study with an extended follow-up period found associations between COVID-19 and the long-term risk of various autoimmune and autoinflammatory connective tissue disorders." Article | Thread Med Precision phenotyping for curating research cohorts of patients with unexplained post-acute sequelae of COVID-19 — Alaleh Azhir et al. "We used longitudinal electronic health records data from over 295,000 patients from 14 hospitals and 20 community health centers in Massachusetts. The algorithm employs an attention mechanism to simultaneously exclude sequelae that prior conditions can explain and include infection-associated chronic conditions." Article | Thread BMC Medicine Predicting post-COVID-19 condition in children and young people up to 24 months after a positive SARS-CoV-2 PCR-test: the CLoCk study — Nugawela et al. "7.2% (68/943) continued to meet the PCC definition at all three subsequent timepoints, i.e. at 6, 12 and 24 months" Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 11th November 2024 News, articles and advocacy The Sick Times - Still Here, November 15: Links and transcript The latest podcast episode celebrates the one year anniversary of The Sick Times. Link below includes a summary and transcript. Podcast | Thread Scotland - The Times Give us the ME care we were promised, campaigners plead "With more than 50,000 Scots affected by the condition, people fighting for specialist care fear someone will die because of a lack of support". Article (archived) l Thread USA - Solve M.E. A new blog post from President and CEO Emily Taylor, Hope Amid Uncertainty, lists some of the items that give her hope. Article | Thread Yale Medicine - When Long COVID Worsens Preexisting Chronic Conditions The latest installment of the "Long COVID Dispatches" series features Billy Hanlon, director of advocacy and outreach at the Minnesota ME/CFS Alliance, who shares his experience with ME/CFS and Long Covid. Article | Thread ............ Research news Australia Department of Health and Aged Care The Medical Research Future Fund announces $28 million for research into Post-Acute Sequelae of COVID-19. This is the second grant opportunity under the $50 million MRFF PASC Research Plan. Announcement | MRFF | Thread PolyBio Research Foundation Fall 2024 Symposium 30 talks over 6 hours now available on YouTube. Video | Thread Berlin Cures Berlin Cures AG reported the results of BC 007 in Long Covid from the randomized and double-blind Phase 2 trial. The analyses of the main endpoints did not show evidence of superior efficacy although the drug was safe and well tolerated. Article | Thread USA - The Institute for Neuro-Immune Medicine (part of Nova Southeastern University) has posted a video (about 42 minutes) called "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID." In it Dr. David Systrom talks about new research on neurovascular issues in ME/CFS and Long COVID. Video | Thread New Zealand The patient organisation ANZMES has uploaded two talks from their annual general meeting earlier this month by Dr. Lynette Hodges and Dr. Nick Bowden discussing their research projects. Talk by Dr. Hodges l Talk by Dr. Bowden l Thread USA Dr. Benjamin Natelson Talks about Research Trials for ME/CFS and Long Covid (PASC) at Mount Sinai Talk provided by MECFS San Diego. Video l Thread ............. Coming events Australia Parliamentary Friends of ME/CFS The next meeting will be held in Canberra on Monday, November 18 (11 am - 1 pm AEDT). Focus is clinical guidelines and education, access to the NDIS, research funding and chronic illness items under Medicare. Registration | Thread USA - NIH to share RECOVER-TLC updates during November 21 webinar A webinar has been scheduled for Thursday, Nov. 21 at 2 PM Eastern Time (registration link will come later). The last part of the webinar will be dedicated to answering questions about RECOVER-TLC (Treating Long COVID). Audience members can pose questions to presenters during the webinar. Questions can also be submitted in advance by sending email to recover-tlc-submissions@nih.gov Announcement | Thread Bateman Horne Center - Lunch and Learn Topic: Self-Compassion Thursday, November 21, 11:30 AM - 1:30 PM Mountain Time (see thread for time in your time zone) Advance registration required. Announcement | Thread ............. Research ME/CFS research Social Sciences & Humanities Open What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis? — Kielland and Liu "The results presented in this article show that whereas some may experience fewer ME symptoms, very few appear to recover to return to normal jobs. Therefore, the results implicitly caution health and welfare authorities to keep ambition levels realistic. A full recovery from zero or very low labor capability around the time of the diagnosis leads to a total return to jobs with normal wages in only exceptional cases." Article | Thread Current Opinion in Virology Blood virome research in myalgic encephalomyelitis/chronic fatigue syndrome: challenges and opportunities — Obraitis and Li "This brief review summarizes previous findings and assesses the evidence supporting the involvement of viral triggers in ME/CFS onset or symptom severity." Article | Thread SciBase Neurology Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review In this new paper, Mark Vink dissects the systematic review by Kuut et al. on cognitive behavioural therapy for CFS, concluding: "That CBT is not an effective treatment is highlighted by the fact that patients remained severely disabled after treatment with it." Article | Thread Sociology of Health & Illness Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations — Ann Kristin Augst et al. "for patients with ME/CFS and/or long/post‐COVID syndrome, these data often represent the only means of ‘proving’ that they are truly (chronically) ill. Still, these data are frequently dismissed as insufficiently meaningful or ignored altogether." Article | Thread Long Covid research Science Translational Medicine Sex differences and immune correlates of Long Covid development, symptom persistence, and resolution — Rebecca E. Hamlin et al. "In this cohort, there were perturbations in innate and early adaptive immunity during acute infection that correlated with development of LC." Article | Thread Pulmonary Circulation The metabolic and physiologic impairments underlying long COVID associated exercise intolerance — Brooks P. Leitner et al. "the increased reliance on anerobic metabolism during exercise extends beyond our current understanding of Long COVID pathobiology, which thus far, has primarily implicated abnormal mitochondrial oxidative phosphorylation." "peak EO2 was reduced" " peak venous succinate is significantly correlated with peak VO2 in long COVID" Article | Thread Preprint: Research Square Identification of soluble biomarkers that associate with distinct manifestations of long COVID — Marcus Buggert et al. "The most significantly enriched hit was the transforming growth factor-β receptor (TGFBR) pathway. In addition, enrichment for terms such as oxidative phosphorylation, fatty acid metabolism, and mitotic spindle suggested that a plasma proteome reflecting an activated cellular state could be a common feature of long COVID." Article | Thread Preprint: MedRxiv Long-term serum spike protein persistence but no correlation with post-COVID syndrome — Annick Fehrer et al. "11 % of the pcHC serum samples, 2 % of PCS nonME/CFS serum samples, and 14 % of the pcMECFS serum samples were positive." Article | Thread Hypertension Blood Pressure Regulation in Post–COVID POTS: Beyond Sinus Tachycardia — Madeleine Johansson et al. "In our study, post–COVID-19 POTS exhibited a higher frequency of hypotensive tendency (or susceptibility) during daytime, with a higher number of SBP drops <80, <90, and <100 mm Hg compared with population-based controls. The change in SBP between daytime and nighttime was also markedly reduced in patients with post–COVID-19 POTS versus controls, suggesting underlying impairment in autonomic regulation." Article | Thread BMJ Open Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID: a population-based longitudinal cohort study — Jiunn Wang et al. "Individuals referred to long COVID clinics in the UK reported little improvement in functional limitations, fatigue and HRQL over the first 6 months after registration in the LWCR, irrespective of the period that participants remained engaged in the programme." Article | Thread Science Translational Medicine Translating insights into therapies for Long Covid — Annukka A. R. Antar and Andrea L. Cox "In advancing effective therapies for people with Long Covid, there is the potential to uncover shared mechanisms and therapeutics for myalgic encephalomyelitis/chronic fatigue syndrome and post-acute infectious syndromes caused by other pathogens." Article | Thread Science Translational Medicine Sex differences in postacute infection syndromes — Julio Silva and Akiko Iwasaki "The similarities between PAISs and autoimmunity suggest shared mechanisms. We argue that sustained or renewed sensing of chronic threats, combined with sex-specific factors, initiates PAIS and autoimmunity development. Sex differences, through factors including sex chromosomes and hormones, alter immune responses and shape the operational state of the immune system." Article | Thread Science Translational Medicine Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web — Michael J. Peluso et al. "Today, many underlying objective abnormalities have been identified in both ME/CFS and Long Covid. More importantly, the scientific community now has far more tools at its disposal, some that could not even have been imagined 40 years ago. Using these tools to study the full spectrum of IACCs should clear away the web of disbelief and denial" Article | Thread Science Translational Medicine Initiating Long Covid RECOVERy — Jeanne Marrazzo et al. "Although it is gratifying that data show continued recovery of many individuals even after suffering for 2 to 3 years after their acute infection, critical work must continue to ensure that thousands do not progress to a lifelong illness resembling ME/CFS.Infection-associated chronic conditions remain complex, challenging, and perhaps one of the least understood areas of medicine." Article | Thread Science Translational Medicine Consequences beyond acute SARS-CoV-2 infection in children — Sharon H. Saydah et al. "Clinicians and caregivers should be aware of the potential for occurrence of Long Covid in the months after SARSCoV-2 infection and monitor children for relevant signs and symptoms." Article | Thread Science Translational Medicine Animal models of Long Covid: A hit-and-run disease — Alexandra Schäfer et al. "Animal models of Long Covid provide ample opportunities to identify early common disease correlates and molecular signatures associated with advanced disease development over time and also provide highly reproducible and tractable models to evaluate countermeasure performance." Article | Thread Journal of Patient Experience An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app — Rachel Meach et al. "This study assessed experiences of long COVID and the potential of pacing through use of the Pace Me app." Article | Thread BMC Public Health “A bit of a cough, tired, not very resilient – is that already Long-COVID?” perceptions and experiences of GPs with Long-COVID in year three of the pandemic. a qualitative interview study in Austria — Wojczewski et al. "Diagnostic tools, adequate payment schemes and adequate training are needed, as well as specific points of contact for patients, in particular with therapy refractory postacute infection syndromes like the postacute COVID condition, including ME/CFS (including multidisciplinary teams, telemedicine, home visits) and patient-centred rehabilitation, with a focus on PEM." Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube Edited to correct a couple of accidental omissions.
Week beginning 18th November 2024 News, articles and advocacy Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) An excellent and informative video by forum member Adam pwme containing all the important details in the history of ME and what has become "the greatest medical scandal of the 21st-century" Video l Thread Canada Canadian Guideline for Post Covid Condition, CAN-PCC Recommendations Public Comment Survey, 2024 is is open. Closes Wednesday Nov 27 at 8:45 pm Pacific / 11:45 pm Eastern The recommendations include exercise and CBT. PDF with recommendations and survey questions | Survey | Thread The Science Bit My submission on the new Canadian draft recommendations for Long Covid Professor Brian Hughes shares from his response to the Canadian draft recommendations for Long Covid, where he argues well against their recommendation of graded exercise therapy and cognitive behavioural therapy as treatments, as well as warning against those who lobby for these approaches. Article l Thread Sweden The research magazine Forskning & Framsteg writes about The National Board of Social Affairs and Health's guideline for post Covid and related conditions including ME/CFS. It has received a lot of criticism, among other for not including WHO's red flags regarding rehabilitation and safety for patients. Dr. Judith Bruchfeld says this is worrying and that she also misses information on POTS and breathing problems. Article l Thread UK ME Association 'Animals need to move', an editorial in the MEA magazine by the MEA Chair of Trustees Neil Riley. The tone and content have caused considerable upset and anger. Riley's attempt to justify himself in a statement on the MEA website has added to the criticisms. The MEA has blocked responses to their item about it on social media. An open letter of complaint by Dr Alexis Gilbert with over 1000 signatures has been sent to the MEA. #ThereForME and Long Covid Advocacy have suspended ties with the MEA as a result of the article. The Sick Times, a US based Long Covid news site, has published a report on this situation. Editorial | Riley's statement | Open Letter | The Sick Times | Thread Australia Parliamentary Friends For ME/CFS Parliamentarians joined national ME/CFS organisations, clinicians, research and the patient community to spotlight an urgent call for action. Recording | Emerge | Bluesky Thread | Forum Thread Bateman Horne Center The Basics: Diagnosing ME/CFS New video (approx. 4 minutes) on how to diagnose ME/CFS, part of "The Basics" series. Video | Thread Aotearoa New Zealand Webinar for medical professionals on MyHealthHub "Navigating The Complexities Of ME/CFS And Long COVID". Join us for an evidence-based, practical webinar that will guide you and your patients through this challenging journey. Webinar | Thread .......... In Memory James Coyne, psychology professor has died. He was known to people with ME/CFS for his Coyne of the Realm blog and his challenges to the PACE trial. "Jim was a brilliant, controversial, irreverent and socially conscious individual who was passionate about promoting robust debate, and debunking "hype and pseudoscience."" Obituary | Thread (members only) ............ Trial by Error by David Tuller The BMJ Corrects REGAIN Study's Expansive Claims; Results Only Applicable to Post-Hospitalized Long Covid Patients Tuller organised a letter of concern regarding some major issues with a BMJ study on rehabilitation as Long Covid treatment. This led to a correction of the study, but not of an editorial which was published by the journal together with the study and contained the same omissions as the now corrected paper. Article l Thread My Letter to BMJ Seeking Correction to Editorial on REGAIN Trial of Mental-and-Physical Rehab for Long Covid A letter to the editor in chief of the BMJ asking about the process of the correction of the REGAIN study and whether the journal also will correct an editorial about the paper (see item above). Article l Thread Professor Chris Ponting on "Replicated Blood-Based Biomarkers" for ME in Big Data Pre-Print Study A conversation with Professor Ponting about a recent preprint examining "data for more than 3,000 molecular and cellular traits in samples from the UK Biobank, including from 1,455 ME cases and 131,303 controls. They found 116 traits that were significant among both female and male ME patients." Interview l Thread Interview with Karen Hargrave, Co-Founder of #ThereForME A conversation with Karen Hargrave from the advocacy campaign #ThereForME about how the campaign started and what they hope to achieve. Interview l Thread ........... Research news ME/CFS Skeptic In a new blog post ME/CFS skeptic provides an overview of ME/CFS research projects that received funding from the NIH in 2024. The total funding amount for ME/CFS research has decreased over the past few years, to 10.1 million. Article | Thread Germany The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027. Article | Thread USA The REVERSE-LC research study now has a website. This study is being done "to see if an FDA-approved drug called Baricitinib (ber-uh-sit-uh-nib), which is already used to treat COVID, can help improve thinking and memory problems and reduce fatigue for people who have Long COVID." Includes a link for those who wish to participate in the study. Website | Thread The Sick Times "RECOVER-TLC is moving toward new clinical trials, initiative leaders share in webinar" Reporting on the RECOVER-TLC (Treating Long COVID) webinar held on November 21. This webinar was recorded but has not yet been posted. Article | Thread ......... Research ME/CFS research Sociology of Health & Illness Navigating the Limits of Diagnosis: Young Adults' Experiences of Chronic Living — Imogen Harper et al. "By listening to the testimony of people with a wide variety of chronic health conditions, who each have different relationships with diagnostic labels and varied diagnostic trajectories, this study can look beyond traditional categorisations of illness experiences and instead begin to examine the tensions and possibilities which arise in the grey areas of illness and medicine." Article | Thread Long Covid research Preprint: BioRxiv Chronic Viral Reactivation and Associated Host Immune Response and Clinical Outcomes in Acute COVID-19 and Post-Acute Sequelae of COVID-19 — Cole Maguire et al. "Anelloviridae transcripts were significantly more prevalent in participants from the Physical PRO group (X2 = 9.95, adj.p = 0.038), which was characterized by high scores on the Patient Reported Outcomes Measurement Information System […] survey." "This finding suggests that detection of Anelloviridae transcripts may serve as a potential biomarker for persistent physical disability in PASC" Article | Thread Biology Red Blood Cell Morphology Is Associated with Altered Hemorheological Properties and Fatigue in Patients with Long COVID — Grau et al. "This study highlights persistent significant changes in RBC rheological parameters and RBC morphology in Long-COVID patients. These include increased RBC aggregation, altered deformability, and a higher proportion of abnormally shaped RBCs" Article | Thread Annals of Neurology Neurologic Manifestations of Long COVID Disproportionately Affect Young and Middle-Age Adults — Natasha A. Choudhury et al. "We showed that younger and middle-age patients suffer from a higher burden of neurologic symptoms, fatigue, sleep disturbance, and cognitive dysfunction contributing to decreased QoL, compared to older patients with Neuro-PASC. However, older Neuro-PASC patients more frequently have abnormal findings on their neurologic exam, likely corresponding with a higher burden of preexisting comorbidities." Article | Thread Frontiers in Immunology High prevalence of long COVID in anti-TPO positive euthyroid individuals with strongly elevated SARS-CoV-2-specific T cell responses and moderately raised anti-spike IgG levels 23 months post-infection — Matula et al. "we observed a considerably higher rate of anti-TPO positivity in the long COVID group than in the convalescent control group (79 vs 18.5%) suggesting that highly elevated anti-TPO titers and post COVID syndrome are related." Article | Thread Gut Microbes Dysrupted microbial tryptophan metabolism associates with SARS-CoV-2 acute inflammatory responses and long COVID — Lu Yao et al. "In this study, we show that tryptophan and microbial generated tryptophan metabolites are associated with dysregulated immune responses to SARS-CoV-2 during hospitalization and these associations were still evident more than 6 months following infection in patients with long COVID." Article | Thread Journal of Internal Medicine Therapeutic BCG vaccine protects against long COVID: The BATTLE randomized clinical trial — Mehrsa Jalalizadeh et al. "Long-term follow-up of the BATTLE trial participants revealed that BCG protects against long COVID development if administered within the COVID-19 convalescence period. The response to BCG was subject-specific, including a paradoxical crossover interaction based on sex." Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube Edited to delete an item duplicated from last week. Also added additional information about the Canadian Long Covid guideline consultation.
Week beginning 25th November 2024 Part 1 of 2 News, articles and advocacy Europe On November 12, 2024, the first post-election meeting of the MEP Interest Group on Brain Health and Neurological Conditions took place at the European Parliament, Brussels. Gracemarie Bricalli, President of the European Myalgic Encephalomyelitis Alliance (EMEA) gave a presentation about ME/CFS. Article | Thread USA MassME 2024 Annual Meeting: A Powerful Paradigm for Living with Chronic Illness - Patricia Fenell "This is a recording of the Annual Meeting of the Massachusetts ME/CFS & FM Association on Saturday, October 26, 2024 which includes a talk by clinician, researcher, educator, and author Patricia Fennell, MSW, LCSW-R." YouTube l Thread Aotearoa New Zealand Two RNZ interviews on LC and ME/CFS Last week Dr Toby Hillman from the UK discussed the overview of Long COVD. Audience response included a comment that NZ was the worst country to have LC and this week Dr Anna Brooks and Rohan Botica from DysImmune Research Aotearoa followed up in response. Toby Hillman Interview 1 | DysImmune Research Interview 2 | Thread UK Covid Inquiry reveals that people in key positions were slow to, or still don't, accept that the Covid-19 virus is airborne, so protection for hospital staff was and still is inadequate. This is leading to ongoing high rates of infection, including high rates of Long Covid in hospital staff. Thread reader | Thread Wellcome collection Living with ME "Jeremy Jeffs is a filmmaker and photographer whose experience of living with ME/CFS inspired him to talk to and photograph others with the same illness. Here nine people reveal the devastating difficulties the condition brings – including their struggles to be believed by medics, to get a diagnosis, to access support, and simply to keep going." Portraits and interviews l Thread Scottish Legal has published a pair of articles by David J. Black titled: 'The great health expenditure catastrophe – diagnosing a failed panacea' and 'Economic fallacies and public health realities' . "The crystallisation of Britain’s vendetta against the suffering was the notorious Malingering and Illness Deception conference held at Woodstock, Oxford in 2001. This was sponsored and funded by the DWP in association with the American health insurance giant, UnumProvident, and was something of a masterclass in the persecution of the sick and ailing." Black brings the story up to date, with the ongoing impact on government treatment of people with ME/CFS and other chronic conditions. Article 1 | Article 2 | Thread Wikipedia On Monday November 25th the online encyclopedia Wikipedia featured its article about ME/CFS on their front pag. Such feature articles are considered as one of the best articles according to Wikipedia's editors and are used as examples for writing other articles. Article l Thread (members only) Long Covid Advocacy (LCA) has launched an online shop where the profits will be shared between ME Research UK and the PolyBio Research Foundation. Shop l Thread The Canary An NZ Patient with Severe ME/CFS Reporting on the situation of Rhiannon, a 34 year old woman in Wellington, New Zealand, who had been discharged from hospital to a rest home for elderly people with completely different needs. Article | Thread ............ In Memory Dr Byron Hyde, Canadian doctor has died. Dr Hyde was well known for his research into ME/CFS and his compassionate care for his patients. Facebook article | MEPedia biography | Thread (members only) ............ Research news and commentary FNIH: 'RECOVER-TLC On November 21, 2024, NIAID and FNIH launched the first in a series of online webinars highlighting recent progress in the RECOVER-TLC program. RECOVER's deadline to submit long COVID research proposals is Feb. 1 'In December, NIAID, along with the National Heart, Lung and Blood Institute (NHLBI) and the National Institute of Neurological Disorders and Stroke (NINDS), will announce 20 new awards to fund RECOVER pathobiology projects. 'Additionally, next month, NIAID and FNIH will begin distributing an online monthly newsletter sharing the latest RECOVER-TLC activities' Video (Duration 57min) | Thread Hungary Forum member Wyva has written a detailed critique of the review 'Long COVID – neurological or somatoform disease?' which speculates that (social) media play a significant role in the pathogenesis of Long Covid. Both texts are in Hungarian. Article | Thread ............ Go to the next post for part 2: Research
Week beginning 25th November 2024 Part 2 of 2 Research ME/CFS research Nature Communications Medicine Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank — Huang et al. "We present a lipoprotein perspective on ME/CFS pathophysiology, highlighting gender-specific differences and identifying overlapping associations with comorbid conditions, specifically surface lipids, and ketone bodies from 168 significant individual biomarker associations." Article | Thread Frontiers in Neurology RESTORE ME: a RCT of oxaloacetate for improving fatigue in patients with myalgic encephalomyelitis/chronic fatigue syndrome — Cash et al. "Oxaloacetate significantly reduced fatigue by more than 25% from baseline, while the control group showed a non-significant reduction of approximately 10%. Intergroup analysis showed a significant decrease in fatigue levels in the oxaloacetate group (p = 0.0039) with no notable change in the control group." Article | Thread International Journal of Environmental Research and Public Health Association Between Chronic Pain and Fatigue Severity with Weather and Air Pollution Among Females with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Jones et al. "In this study, several significant relationships were identified between symptoms in ME/CFS and weather and air quality factors. With the exception of the relationship between the [air quality index] and pain, the majority of these effects were small" Article | Thread Fatigue: Biomedicine, Health & Behavior ‘Pacing’ for management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a systematic review and meta-analysis — Nilihan E.M. Sanal-Hayes et al. "We aimed to undertake a PRISMA-accordant meta-analysis concerning the effect of pacing on ME/CFS patients’ symptoms." Article | Thread Long Covid research Journal of the Royal Society of Medicine Healthcare utilisation of 282,080 individuals with long COVID over two years: a multiple matched control, longitudinal cohort analysis — Yi Mu et al. "Over two years, people with LC have high healthcare utilisation from primary care and ED to hospital OP and IP care with high cost to health systems. The financial, infrastructural and human resource required to meet healthcare needs requires immediate action, particularly in already over-stretched health systems. In order to avoid this cost to individuals, populations and health systems, treatment and prevention of LC must be prioritised in research, practice and policy." Article | Thread Cell Host & Microbe Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19 — Zhouyi Rong et al. "we observed the accumulation of SARS-CoV-2 spike protein in the skull-meninges-brain axis of human COVID-19 patients, persisting long after viral clearance. Further, biomarkers of neurodegeneration were elevated in the cerebrospinal fluid from long COVID patients, and proteomic analysis of human skull, meninges, and brain samples revealed dysregulated inflammatory pathways and neurodegeneration-associated changes." Article | Thread Medical Journal of Australia Towards a cure for long COVID: the strengthening case for persistently replicating SARS-CoV-2 as a driver of post-acute sequelae of COVID-19 — Michelle JL Scoullar et al. "In this commentary, we describe some of these advances that indicate that long COVID may be driven by “long infection” and that persistent replicating SARS-CoV-2 may be the potentially mechanistically unifying driver for long COVID." Article | Thread Preprint: BioRxiv Unraveling SARS-CoV-2 Host-Response Heterogeneity through Longitudinal Molecular Subtyping — Kexin Wang et al. "Notably, one critical subtype (SubF) was uniquely characterized by early excessive inflammation, insufficient anticoagulation, and fatty acid dysregulation, alongside higher incidences of hematologic, cardiac, and renal complications, and an elevated risk of long COVID." Article | Thread Nature Pediatric Research Long COVID syndrome in children: neutrophilic granulocyte dysfunction and its correlation with disease severity — Kovács et al. "Neutrophilic granulocyte dysfunction was found in LCS children, with decreased superoxide-producing activity and phagocytosis compared to [convalescent children]. The number of complaints of children with LCS correlated significantly with altered neutrophil effector functions." Article | Thread BMC Infectious Diseases Exploring the landscape of symptom-specific inflammatory cytokines in post-COVID syndrome patients — Tilikete et al. "Significant findings emerged from the study, revealing elevated levels of two or more pro-inflammatory cytokines in all examined patients, with the majority showcasing increased levels of IP-10, IL-8, IFN-γ, MCP-1, and TNF-α. This observation strongly supports the persistence of residual inflammation during PCS." Article | Thread PLOS Global Public Health A critical analysis of UK media characterisations of Long Covid in children and young people — Chloe Connor et al. "This study highlighted discursive practices employed by journalists that contribute to epistemic injustice. The study’s findings also indicate a pattern of [healthcare practitioners] dismissing and stigmatising families impacted by Long Covid in [children and young people]." Article | Thread PLOS Global Public Health Perceptions of prevalence and management of post-acute sequelae of SARS-CoV-2 (PASC) infection among healthcare workers in Kweneng District, Botswana: Report of a district-wide survey — Tebogo T. Mamalelala et al. "Findings indicate that PASC symptoms are frequently encountered in clinical practice in Botswana with significant overlap with acute COVID-19, influenza-like illnesses, and tuberculosis, likely placing increased burden on existing health system processes. Providers reported uncertainty in managing presumed PASC, and current practice patterns may contribute to unintended adverse effects." Article | Thread Brazilian Journal of Medical and Biological Research Changes in cerebral glucose metabolism among mild long COVID patients: an [18F]FDG PET/CT study — Sakamoto et al. "Twenty-two patients with mild long COVID cognitive symptoms and 20 healthy volunteers without cognitive, psychiatric, or neurological impairments and no history of COVID-19 infection underwent cerebral PET/CT scans using [18F]FDG to assess cerebral metabolism." "The analysis focused on identifying areas of hypometabolism and hypermetabolism, indicative of altered glucose metabolism possibly related to COVID-19's neurological impact. No statistically significant differences were found between the mild COVID and healthy groups." Article | Thread European Journal of Nutrition The effects of 3-month supplementation with synbiotic on patient-reported outcomes, exercise tolerance, and brain and muscle metabolism in adult patients with post-COVID-19 chronic fatigue syndrome (STOP-FATIGUE): a randomized Placebo-controlled clinical trial — Ranisavljev et al. "Both the synbiotic and placebo intake resulted in a significant reduction in general fatigue after 3 months compared to the baseline values (P ≤ 0.05). This was accompanied by a significant interaction effect (time vs. treatment) for post-exercise malaise (P = 0.02), with synbiotic superior to placebo to attenuate post-exercise malaise. The synbiotic also demonstrated a significant advantage over placebo in increasing choline levels at the thalamus (P = 0.02), and creatine levels at left frontal white matter (P = 0.05) and left frontal grey matter (P = 0.04)." Article | Thread BMJ Interventions for the management of long covid post-covid condition: living systematic review - Zeraatkar et al. Authors include proponents of psychobehavioural approaches to ME/CFS and Long Covid including Flottorp, Garner and Busse. Using very weak subjective evidence, the abstract concludes: "Moderate certainty evidence suggests that CBT and physical and mental health rehabilitation probably improve symptoms of long covid." The UK Science Media Centre comments are all from proponents of this approach, including Trudie Chalder. There has been a publicity campaign in the UK media promoting it. The Science Bit by Professor Brian Hughes That BMJ review of Long Covid therapies does not show what it says it does " the authors are able to produce their findings only by looking at studies they themselves declare are biased. When these biased studies are excluded, the so-called evidence disappears." Long Covid Advocacy Stacking the Deck - The systemic review recommending CBT & exercise for Long Covid. Blog dissecting the multiple flaws and biases in the review. Article | SMC | Press release | The Science Bit | Long Covid Advocacy | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
