This thread has a Science for ME 'News in Brief' post for each week in January 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 1st January 2024 News, advocacy and media The Philadelphia Inquirer Anthony Fauci and unlocking the biggest mystery in medicine Michael J. Stephen MD writes that Covid-19 confirms the suspicion that viruses can trigger a "cascade of decline and misery". He has spoken to Anthony Fauci about a road map for how to approach ME/CFS. Article l Thread David M Tuller Interview with journalist Ed Yong From the description: "Last month, Yong wrote an opinion piece for The New York Times in which he discussed what he learned as a journalist from covering long Covid. He and I spoke earlier today about the Times piece, how he came to grasp the seriousness of long Covid, and related stuff." Duration: 35 minutes. Interview l Thread Trial by Error by David Tuller Update on NICE Response to "Anomalies" Paper; Higher ME/CFS Population Estimates in CDC Survey "I recently learned that NICE submitted a response on October 1st, which was peer-reviewed; NICE submitted a revision on November 9th. After a second round of peer review, NICE’s response was sent to the “editorial committee” on December 7th for a final decision. That decision is still being awaited—or at least no decision is noted on the manuscript timeline in the JNNP editorial portal. What is holding things up"? Article l Thread ................. Coming events USA - NIH Next ME/CFS Research Roadmap webinar Topic: Circulation Thursday, January 11, 11 AM Pacific / 8 AM Eastern Webinars will be recorded and posted online, with a transcript, after the event. Agendas | Registration | Thread #MEAction - Partner / Caregiver Support Call Sunday, January 7 12 noon Pacific / 3 PM Eastern Zoom call for partners or caregivers of people with ME or Long COVID. See thread for time in your time zone. Announcement | Thread Bateman Horne Center - Free Online Support Groups Tuesday, January 9, 1:00 - 2:00 PM Mountain Time Topic: Hopelessness & Suicidality Tuesday, January 16, 1:00 - 2:00 PM Mountain Time Topic: Respecting & Nourishing Internal Dialogue See thread for times in your time zone. Event Calendar | Thread ................ Research news UK DecodeME "Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back." Thread ................ Research ME/CFS research PLOS ONE Heterogenous circulating miRNA changes in ME/CFS converge on a unified cluster of target genes: A computational analysis - Kaczmarek Analysis of microRNA data from 4 studies "...points to impairments in exercise hyperemia, angiogenic adaptations to hypoxia, antioxidant defenses, and TGF-β signaling, as well as a shift towards mitochondrial fission, corroborating and explaining previous direct observations in ME/CFS." Article | Thread Neurological Sciences Dysregulation of the autonomic nervous system in ME/CFS and post-COVID syndrome: insights from 48-h heart rate variability monitoring - Ziaja et al Article | Thread A 6-month Ibudilast treatment regimen aimed to improve brain function in ME/CFS patients: A case study - Ziaja et al Article | Thread Research Gate - Conference presentations and posters by the same team: Advancing Therapeutics for Post-Viral ME/CFS and SFN in Long COVID: A 20- Week Sensomotoric Training Intervention - Ziaja et al Article | Thread Comparing Fractional Anisotropy Diffusion Tensor Imaging of Patients with ME/CFS, Long COVID and Healthy Controls - Ziaja et al Article | Thread Advanced Imaging Analysis Reveals Altered Volume Segmentation, Structural Characteristics, and Fractional Anisotropy in ME/CFS and PCS - Ziaja et Article | Thread International Journal of Molecular Sciences Mitochondrial Dysfunction and Coenzyme Q10 Supplementation in Post-Viral Fatigue Syndrome: An Overview - Mantle et al. A review of past studies that concludes further research is needed including biological mechanisms, bioavailability of supplements and efficacy trials. Article | Thread Biocomputing 2024 Proceedings of the Pacific Symposium KombOver: Efficient k-core and K-truss based characterization of perturbations within the human gut microbiome - Sapoval et al "...we highlight how graph-based approaches such as k-core and K-truss can be informative for pinpointing microbial community dynamics within a [ME/CFS] cohort." Article | Thread Medicina Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients - Thoma et al. The authors, which include prominent ME/CFS researchers Carmen Scheibenbogen and Leonard Jason, argue that the belief that ME/CFS is a psychosomatic illness is detrimental to the care and well-being of affected patients. Article | Thread University of Alabama Transdiagnostic Symptom Clusters Among Idiopathic Pain and Fatigue Disorders - Chloe Jones In this thesis, a total of 2,731 comprehensive medical history and symptom reports were collected from respondents across the globe with a variety of diagnoses. The agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was slight. Article | Thread Journal of the Neurological Sciences Exploring the neurocognitive consequences of post-exertional malaise in myalgic encephalomyelitis - Leveau et al. This Canadian research team aimed to measure how individuals’ cognition can be impacted by the induction of PEM, and investigate the difference in cognitive response. Article | Thread International Journal of Integrated Care Digital assistance to support integrated healthcare - Araja et al. A project to develop a digital assistance platform for long-COVID and associated myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) patient healthcare is planned in Latvia. Article | Thread The Australian Community Psychologist How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms - Jason & Dorri This article illustrates how patients and international researchers can be involved in efforts to develop and translate international assessment instruments to validly capture domains of unexplained illness like ME/CFS. Article | Thread Long Covid research Nature Communications Muscle abnormalities worsen after post-exertional malaise in long COVID — Appelman et al. “We show that skeletal muscle structure is associated with a lower exercise capacity in patients, and local and systemic metabolic disturbances, severe exercise induced myopathy and tissue infiltration of amyloid-containing deposits in skeletal muscles of patients with long COVID worsen after induction of postexertional malaise.” Article | Thread Nature Communications Features of acute COVID-19 associated with post-acute sequelae of SARS-CoV-2 phenotypes: results from the IMPACC study — Ozonoff et al. Prospective study of hospitalised patients. “While numerous cytokines have been associated with PASC in other studies, in this study, we found that only fibroblast growth factor 21 (FGF21) was significantly associated with the [Patient Reported Outcomes] clusters.” Article | Thread Cureus New Alcohol Sensitivity in Patients With Post-acute Sequelae of SARS-CoV-2 (PASC): A Case Series — Ella F. Eastin et al. “A definitive causal link between PASC and alcohol sensitivity cannot be established based on a limited case series. However, these cases reported here may reflect a larger population of individuals with PASC who suffer from new-onset alcohol sensitivity following COVID-19.” Article | Thread Nature Reviews Cardiology Cardiovascular autonomic dysfunction in post-COVID-19 syndrome: a major health-care burden — Fedorowski et al. “In this Review, we define [Cardiovascular Autonomic Dysfunction] and its major forms that are encountered in post-COVID-19 syndrome, describe possible CVAD aetiologies, and discuss how CVAD, as a component of post-COVID-19 syndrome, can be diagnosed and managed.” Article | Thread European Archives of Psychiatry and Clinical Neuroscience Conceptual foundations of acetylcarnitine supplementation in neuropsychiatric long COVID syndrome: a narrative review — Helbing et al. “The aims of this review are (1) to provide an overview of the clinical and biological overlap between neuropsychiatric long COVID and other fatigue-associated neuropsychiatric disorders, (2) to examine the shared molecular mechanisms of fatigue and depressive symptoms involving acetylcarnitine metabolism, and finally (3) to review the current evidence on acetylcarnitine supplementation studies as a treatment” Article | Thread ............. 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Week beginning 8th January 2024 News, advocacy and media New York Amsterdam News The continuing fight for Long COVID and Myalgic Encephalomyelitis patients Interview with Billy Hanlon, director of advocacy and outreach for the Minnesota ME/CFS Alliance. He talks about Long Covid and ME/CFS advocacy and urges people to contact their elected officials to support pending Long Covid legislation. Article | Thread Beth Mazur Memorial Service and Obituary #MEaction shares Beth Mazur's memorial service online and her life partner Brian Vastag's moving obituary. The obituary for "a fierce but unassuming advocate for people with a devastating - and devastatingly neglected - chronic illness" is also shared by David Tuller. #MEAction Website | Obituary l Thread (members only) Switchyard Magazine The Long Haul An essay by Lygia Navarro providing a heartbreaking account of her Long Covid journey in a world that's looking away. "If not for decades of medical disinterest in post-infectious illnesses such as ME/CFS, long Covid might have been treatable from the get-go." Article l Thread Dr Cat Hicks Covid Data Log An essay inspired by Giorgia Lupi's recent high profile article in the NY Times, also detailing the author's experiences. "It is September, 2022, the beginning of the waiting rooms. I'm glad I don't know what's coming. The very first doctor that I see says the pain I feel is anxiety." Article | Thread ................. Research news and commentary DecodeME Spit kits - please return them by 31st January. Second questionnaire Invitations to participate are being emailed this week, to be submitted by 29th February. Those doing paper questionnaires, please post them by 15th February. Article | Thread UK Research and Innovation has published two articles about patient participation in research by two of the principal investigators of DecodeME. Andy Devereux-Cooke describes his experience as a patient and co-investigator on the management group, and the value of the patient voice, for example in making questionnaires relevant and accessible. Chris Ponting, the lead investigator says: "People with lived experience are at the heart of this ME/CFS research study and involved in all aspects of the research, from design, governance and delivery." He describes the adjustments needed to work this way and recommends all medical research should involve patients at every stage. Article | Article | Thread UK MRC - Online survey Consultation on Medical Research Council draft strategy for public partnerships, closes 29th January 2024 "The Medical Research Council (MRC) invests public money in research which aims to improve human health... We are consulting on MRC’s draft strategy for public partnerships, and we would like to hear your views." Survey | Thread UK ME/CFS Biobank is looking for more volunteer healthy participants. "We're starting the new year with over 100 new participants! However, our research relies on the comparison between ME/CFS patients and healthy controls to uncover vital insights." Thread Sweden The Swedish patient organisation RME encourages ME patients to take part in OMF's global research register for trial participants. Patient blogger Mitt Eremitage raises the question if OMF and RME might contribute to a false sense of security, as some studies may be conducted by third parties without any quality control from OMF. Article (Swedish) l Thread Trial by Error by David Tuller Dutch Study Links PEM in Long Covid to Biological Abnormalities A summary of debate on X/Twitter after the publication of a study which found biological differences post exercise in long Covid patients with PEM. Tuller rebuts some pushback the study has received. Article l Thread Study Finds "Elevated Brain Injury and Reduced Grey Matter Volume" a Year After Hospitalization for COVID-19 "Chronic illness and depression are frequently found to be associated, and their interactions can run in both directions. Distinguishing cause and effect can be challenging. In this case, however, the study found the following: “Pre-existing depression or a history of antidepressant use were not significantly associated with post-acute cognitive impairment.”" Article l Thread .................. Coming events USA - Senate Committee on Health, Education, Labor and Pensions "Addressing Long COVID: Advancing Research and Improving Patient Care" Livestream on Thursday, Jan. 18 10 AM Eastern Time Details | Thread #MEAction - #MillionsMissing 2024 Informational session Saturday, Jan. 20 11 AM Pacific / 2 PM Eastern (see thread for time in your time zone) Details | Thread Solve M.E. - Changes in the Gut Microbiome in ME/CFS and Long Covid Monday, Jan. 22 1 PM Pacific / 4 PM Eastern (see thread for time in your time zone) Details | Thread .................. Research ME/CFS research Journal of Clinical Medicine Advancing Research and Treatment: An Overview of Clinical Trials in [ME/CFS] and Future Perspectives - Seton et al. "This review synthesizes insights from clinical trials exploring pharmacological interventions and dietary supplements targeting immunological, metabolic, gastrointestinal, neurological, and neuroendocrine dysfunction in ME/CFS patients which require further exploration." Article | Thread Journal of Translational Medicine Central 5-HTergic hyperactivity induces ME/CFS-like pathophysiology - Lee et al A attempt to induce ME/CFS like behaviour in mice using a high dose SSRI drug and exercise challenge. Article | Thread Frontiers in Immunology Metabolomic and immune alterations in long COVID patients with chronic fatigue syndrome - Saito et al. "Our results demonstrate that LC patients exhibit persistent metabolomic abnormalities 12 months after the acute COVID-19 disease. Of note, such metabolomic alterations can be observed in the R group 12 months after the acute disease." Article | Thread Psychological Medicine Disentangling pain and fatigue in chronic fatigue syndrome: a resting state connectivity study before and after cognitive behavioral therapy - Van der Schaaf et al. This study used resting-state fMRI to disentangle networks associated with fatigue and pain symptoms in ME/CFS patients, and to link changes in those networks to clinical improvements following cognitive behavioral therapy (CBT). Article | Thread Vertex Revista Argentina De Psiquiatria Myalgic encephalomyelitis/chronic fatigue syndrome as a complication of COVID-19 post-acute syndrome in adults. Bibliographic Review - Uguña & Romero This review in Spanish describes ME/CFS as a complication of the post-acute syndrome of COVID-19 in adults. Article | Thread Long Covid research Nature Immunology Long COVID manifests with T cell dysregulation, inflammation and an uncoordinated adaptive immune response to SARS-CoV-2 — Yin et al. “Our analysis suggested an improper crosstalk between the cellular and humoral adaptive immunity in LC, which can lead to immune dysregulation, inflammation and clinical symptoms associated with this debilitating condition.” Article | Thread Current Research in Microbial Sciences Persistence of circulating CD169+monocytes and HLA-DR downregulation underline the immune response impairment in PASC individuals: the potential contribution of different COVID-19 pandemic waves — Fanelli et al. “herein we highlighted the presence of specific activated myeloid subpopulations in PASC individuals, suggesting a role of CD169 and HLA-DR expression in monocytes in both COVID-19 disease and in the chronic post-infection inflammation that persists in PASC” Article | Thread Gynecologic Oncology Reports Increased von Willebrand and Factor VIII plasma levels in gynecologic patients with Post-Acute-COVID-Sequela (PASC)/Long COVID — Bellone et al. “We found elevated VWF and Factor VIII levels in all 10 PASC/LC patients (means of 254% and 229%, respectively) vs none of the 5 randomly selected cancer control patients (means of 108% and 95%, respectively)” Article | Thread Preprint: Research Square Post-COVID cognitive deficits at one year are global and associated with elevated brain injury markers and grey matter volume reduction: national prospective study — Benedict Michael et al. “this prospective multicentre longitudinal cohort study found evidence of pervasive global cognitive impairment, associated with persistently raised brain injury markers, depression symptomatology, and reduced anterior cingulate cortex volume.” Article | Thread BMC Medicine Risks of digestive diseases in long COVID: evidence from a population-based cohort study — Ma et al. “we found that even in people with mild COVID-19 symptoms who did not receive hospitalization treatment, the risks of GI dysfunction, PUD, GERD, and NAFLD were evident, while the risks of severe liver disease, IBD, and biliopancreatic diseases were not.” Article | Thread The Lancet Respiratory Medicine The effectiveness of COVID-19 vaccines to prevent long COVID symptoms: staggered cohort study of data from the UK, Spain, and Estonia — Martí Català et al. “Vaccination against COVID-19 consistently reduced the risk of long COVID symptoms” Article | Thread Nature Reviews Neurology Post-COVID dysautonomias: what we know and (mainly) what we don’t know — Goldstein “This Review provides an update on the literature relating to ANS abnormalities in people with post-COVID syndrome and presents a theoretical perspective on how the ANS might participate in common features of PASC.” Article | Thread Preprint: MedRxiv Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions — Karen Bonuck et al. “Disabling Long COVID was reported by 1.5% (n= 10,401) of n=757,580 respondents” “It ranked in the top 25% […] but received just 10%[...] funding. Only 5 conditions received less […] including [ME/CFS] (<1%), another post-viral, female-dominant condition.” Article | Thread Preprint: BioRxiv Innate Immune Activation and Mitochondrial ROS Invoke Persistent Cardiac Conduction System Dysfunction after COVID-19 — Deepthi Ashok et al. “The findings indicate that long term dysfunction and immune cell remodeling of the CCS is induced by COVID-19, arising indirectly from oxidative stress and excessive activation of cardiac innate immune responses during infection.” Article | Thread ............. S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 15th January 2024 News, advocacy and media USA Addressing Long COVID: Advancing Research and Improving Patient Care The U.S. Senate committee on HELP (Health, Labor, Education & Pensions) live-streamed this hearing on January 18. The website has a recording of the meeting (about 3 hours). You can also download testimony of all the people who spoke at the hearing. Website | Thread Canada Canadian Guidelines for Post COVID-19 Condition This federal program has published "an initial set of 11 good practice statements that cover different topics related to post COVID-19 condition." Website | Thread Cochrane petition and complaints The Science for ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' remains open and so far has nearly 10,000 supporters. We await further news from Cochrane on our complaints and on progress with the new review. Petition | Thread BMJ Best Practice Myalgic encephalomyelitis (Chronic fatigue syndrome) This document was updated this month. Dr Shepherd of the ME Association has written to the publication: "this BMJ guidance needs to be looked at again to make sure everything is consistent with the new NICE guideline on ME/CFS and that it includes all the key recommendations from NICE regarding diagnosis, management, children, severe and very severe ME/CFS". BMJ | MEA | Thread David Tuller has been interviewed in "Tub Talks With Damon" In a refreshing setting Tuller and Damon L. Jacobs talk about "Controversies and Compassion for Long COVID and ME/CFS". From the presentation: "Award winning journalist / patient advocate David Tuller has been fighting for the dignity and rights of people living with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for years. How does the emerging research on Long COVID help his plight? What can YOU do to help and support someone struggling with symptoms?" Youtube video l Thread The Lancet Children and young people with long COVID: overlooked and neglected - Santana Jaidka and Eden Byrne An essay by two young people from the UK who have suffered from long COVID for more than two years. They write about living with long COVID, major adaptations they have had to make and the lack of help and understanding. "Many of us have been told that we are simply “unfit” from the pandemic’s wider effects, that we should “push through” our symptoms, discomfort, and illness, and that we should continue with sports and other activities. This makes us feel ignored and gaslighted about our symptoms." Essay l Thread BBC Scotland Long Covid: NHS legal action launched by family of girl The child has been sick since 2020 and has not had appropriate referrals or help from the NHS. Article | Thread teenvogue COVID Isn't Going Anywhere. Masking Up Could Save My Life Alice Wong writes about trying to keep safe in the pandemic as a high-risk person. "The normalization of repeated infections, preventable deaths, and anti-science propaganda is tearing the fabric of society, with the most marginalized hanging by a thread." Article l Thread UK BBC Dragons' Den TV program is being criticised on the forum for its promotion of a sales pitch for a scam treatment its promoter claims cured her ME. Also being covered uncritically in other media, apart from Digitial Spy which has a good critical article which quotes Dr Shepherd. Article | Thread ............. Research news and commentary The Netherlands The Netherlands National Cohort and Biobank Consortia – an eight-year collaboration of Dutch research institutes, medical centers and patient organizations dedicated to the study of ME/CFS - has officially launched with a conference and new website. Website | Thread DecodeME Spit kits - final reminder - please return them by 31st January. Second questionnaire, which participants should have received by email, to be submitted by 29th February. Those doing paper questionnaires, please post them by 15th February. Article | Thread ME Research UK and Daphne Jackson Trust launch ME/CFS Fellowship Open to people with a relevant PhD who are returning after a career break. Chris Ponting, leader of the DecodeME project, would welcome an applicant through this route. Closing date Monday 4th March 2024. Details | Thread Australia National Centre for Neuroimmunology and Emerging Diseases The NCNED at Griffith University announces three PhD Scholarships in the immunology and neuroimaging of ME/CFS and Long Covid. One | Two | Three | Thread FUNCAP tool Programmer Raff Benato has made an online tool where people can fill in the FUNCAP questionnaire and compare their scores. The questionnaire is about functional capacity. Website | Thread USA Metrodora Foundation Announces New Scientific Advisory Board The Metrodora Foundation, a non-profit organization trying to accelerate research on "neuroimmune axis disorders", has created a seven person advisory board. Announcement | Thread ............. Research ME/CFS research Clinical Therapeutics Joint Flexibility and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After Mononucleosis - Poomkudy et al. This study did not find a connection between joint hyperflexibility and the development of ME/CFS after infectious mononucleosis. Article | Thread International Journal of Behavioral Medicine Efficacy and Acceptance of Cognitive Behavioral Therapy in Adults with Chronic Fatigue Syndrome: A Meta-analysis - Maas et al. The authors reviewed 15 trials and conclude that "CBT for CFS is effective in reducing fatigue, fatigue related impairment, and severity of depression and anxiety." Article | Thread Long Covid research Science Persistent complement dysregulation with signs of thromboinflammation in active Long Covid — Carlo Cervia-Hasler et al. “Our multicenter, longitudinal study provides evidence of an inflammatory signature restricted to patients with active Long Covid, with diagnostic accuracy 6 months after symptom onset and independent of any information on COVID-19 history, thus facilitating clinical applicability. Moreover, our findings address the gap between observed complement-activating properties of SARS-CoV-2 and reports of microclots, vascular inflammation, and cardiovascular complications.“ Article | Thread Frontiers in Immunology Metabolomic and immune alterations in long COVID patients with chronic fatigue syndrome — Saito et al. “Our results demonstrate that LC patients exhibit persistent metabolomic abnormalities 12 months after the acute COVID-19 disease. Of note, such metabolomic alterations can be observed in the R group 12 months after the acute disease. Hence, the metabolomic recovery period for infected individuals with SARS-CoV-2 might be long-lasting” Article | Thread Nature Cardiovascular Research Cardiovascular effects of the post-COVID-19 condition — Goerlich et al. “In this Review, we explore the current state of knowledge of the post-COVID-19 condition and identify areas where additional research is warranted.” Article | Thread Nature Scientific Reports Microstructural brain abnormalities, fatigue, and cognitive dysfunction after mild COVID-19 — Scardua-Silva et al. The WM analyses with DTI revealed higher axial diffusivity values in post-infected patients […] There were no significant correlations between neuropsychological scores and neuroimaging features.” “Our results suggest persistent cognitive impairment and subtle white matter abnormalities in individuals mildly infected without anxiety or depression symptoms.” Article | Thread Chemical & Biomedical Imaging 3D Holo-Tomographic Mapping Of Covid-19 Microclots In Blood To Assess Disease Severity — Talia Bergaglio et al. “the label-free DHTM-based approach demonstrated in our study could serve as a powerful tool for screening microclots in plasma.” Article | Thread Frontiers in Neurology Decreased phrenic nerve compound muscle action potential, inspiratory muscle strength, and exercise capacity after COVID-19 — Vonbank et al. “In our explorative study of post COVID patients with persisting exercise intolerance and exertional dyspnea we identified in 27.1 % of the patients an abnormal phrenic nerve CMAP while the nerve conduction was normal.” Article | Thread JAMA Pediatrics Long-Term Microvascular Changes in Multisystem Inflammatory Syndrome in Children — Julie Boever et al. “This study found significant, persistent microvascular damage with redistribution of the vessel architecture (ie, loss of capillaries with relative increase in larger vessels) in patients with MIS-C and suggests a long-term association with arterial stiffness” Article | Thread Pediatrics Vaccine Effectiveness Against Long Covid In Children — Razzaghi et al. “This large retrospective study shows a moderate protective effect of SARS-CoV-2 vaccination against long COVID.” Article | Thread Preprint: MedRxiv Blood transcriptomics reveal persistent SARS-CoV-2 RNA and candidate biomarkers in Long COVID patients — Soraya Maria Menezes et al. “platelet-expressed transcripts were positively correlated to viral load, providing a mechanistic link to the hypercoagulative state previously demonstrated in Long COVID, as well as a possible viral reservoir.” “immunometabolism score was negatively correlated with blood viral load, suggesting a decreased metabolic status in Long COVID due to ongoing viral replication.” Article | Thread .............. 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Week beginning 22nd January 2024 Part 1 of 2 News, advocacy and media USA Today US is turning its back on long COVID. We'll pay the price if we don't act. An opinion piece by U.S. Senator Bernie Sanders, chairman of the Senate Committee on Health, Education, Labor and Pensions. He talks about many Long Covid issues including the growing number of new patients, lack of effective treatments, a higher risk with each new COVID infection, and an ill-equipped health care system. Quote: "There is a hidden public health crisis in America that we can no longer ignore." Article | Thread UK Sky News 'The NHS sold out its staff': Doctors whose lives were devastated by long COVID to sue health service A legal firm has taken on the case of a hundreds of doctors who were not provided with adequate protection (masks etc) when treating people with Covid-19 infection, and are now unable to work due to Long Covid. Article | Thread Chronically Ignored Inselfilm produktion, a Berlin based German production company has presented an investigative documentary on ME/CFS titled 'Chronically Ignored'. ME/CFS patient Sibylle Dahrendorf is one of the authors and directors. Article | Thread UK BBC following the Dragon's Den program's uncritical promotion of a scam treatment for ME/CFS we reported last week, #MEActionUK has written a letter of complaint to the BBC and Action for ME has written a letter, signed by other ME organisations, to the government Chair of the Culture, Media and Sport Committee and Chair of the Health and Social Care Committee expressing their concern at the BBC promoting misinformation. AfME Chief Executive, Sonya Chowdhury, also wrote directly to the Director-General of the BBC. The company selling the scam treatment has been reported to Advertising Standards for making false medical claims. The BBC has added an on screen notice during the presentation on the replay video. Extensive media coverage includes excellent article by Ellie Fry in the Mirror. See threads for other links. #MEAction UK | Action for ME | Mirror | Thread Finland The patient organisation Suomen lääketieteellinen ME/CFS-yhdistys ry has shared information about a planned thesis on ME/CFS patient's difficulties with applying for benefits. They encourage ME patients to share their experiences. Submissions are open until February 19th. More information l Thread .............. Research news and commentary Hungary HUF 3 billion research is being launched in Szeged on the relationship between infectious and immunological diseases. ME/CFS and Long Covid are two of the illnesses being studied. This research project is part of the ID-DarkMatter-NCD project, coordinated by Thomas Vogl from the Medical University of Vienna, Austria. Article | Thread USA - NIH Recordings from two webinars in the ME/CFS Research Roadmap series, Lesser Studied Pathologies (January 5) and Circulation (January 11) are now available. Transcripts for both videos are still to come. Website | Thread David M Tuller Interview with Dr Rob Wust Interview with Rob Wust, one of the main authors of a recent study titled "Muscle abnormalities worsen after post-exertional malaise in long COVID" which has received a lot of attention. Interview l Thread The New Yorker What would it mean for scientists to listen to patients? About how the researchers Krumholz and Iwasaki are levelling up patient-centred research via the Long Covid trial at Yale titled LISTEN (Listen to Immune, Symptom and Treatment Experiences Now). "Usually, investigators will identify a few patient representatives to sit on an advisory group. Krumholz and Iwasaki, in contrast, envision their study as a “safe space” designed to consider participants at every step of the discovery process. Theirs is an exercise in transparency that has few precedents in clinical science." Article l Thread Nature Graded exercise therapy should not be recommended for patients with post-exertional malaise, Ching-Chuan van Rhjin-Brouwer, Hellemons, Stingl, Hoffman, VanDerNagel, Davenport, Untersmayr, Scheibenbogen & Putrino Earlier this month Fedorowski et al published a review on post-COVID-19 syndrome and cardiology. In the review graded exercise therapy (GET) was recommended for Long Covid with the refuted PACE study as reference. Now a group of experts have written a comment providing information on post exertional malaise and why GET should not be a treatment for patients with this. The review authors have written a reply claiming that PEM is not extensively studied and that they have seen improvement in their clinical practice with GET in POTS patients. Comment l Reply l Thread Trial by Error by David Tuller Debate Over Recent Citation of Arguably Fraudulent PACE Trial Discusses the above controversy over recommendation of graded exercise therapy and referencing of the PACE trial in support, and ensuing discussion with Professor Fedorovski on Twitter/X. Article | Thread ............. Coming events UK Conference MitOX 2024, 12th April 2024 "MitOX is our annual meeting packed with short talks and posters on cancer metabolism, neuroscience, diabetes, mitochondrial disorders and general mitochondrial biology" Speakers include Daniel Missailidis, La Trobe, Mitochondrial abnormalities in cell lines from people with ME/CFS. In person and online Zoom attendance. Registration required. Details | Thread ............. Go to the next post for the research section
Week beginning 22nd January 2024 Part 2 of 2 Research ME/CFS research Preprint IgG Antibody Responses to Epstein-Barr Virus in ME/CFS: Their Effective Potential for Disease Diagnosis and Pathological Antigenic Mimicry - Fonseca et al. Computer analysis of "a large public dataset on the IgG antibodies to 3,054 EBV peptides" from healthy controls and people with ME/CFS. "we could identify a 26-antibody classifier that could distinguish ME/CFS patients with an infectious disease trigger from HCs with 100% and 90% accuracies on the train and test sets, respectively." After further bioinformatic analysis they conclude: "these 26 antibodies against EBV have an effective potential for disease diagnosis of a subset of patients, but they are less likely to trigger pathological autoimmune responses that could explain the pathogenesis of ME/CFS." Article | Thread Journal of Crohn's and Colitis Systemic antibody responses against gut microbiota flagellins implicate shared & divergent immune reactivity in Crohn's Disease & CFS - Bourgonje et al. "Antibody binding to the N-terminal domain of stimulator and silent flagellins may impact TLR5 activation in both CD and ME/CFS patients... Our results highlight the diagnostic potential of these antibody responses and their impact on innate/adaptive immunity balance." Article | Thread Preprint Herpesvirus Infection as a Systemic Pathological Axis in [ME/CFS]- Nunes, Kell and Pretorius Hypothesis article reviews "evidence linking herpesviruses to persistent EC infection and the implications for endothelial dysfunction, encompassing blood flow regulation, coagulation, and cognitive impairment" "We suggest that the chronicity of ME/CFS symptoms and the multisystemic nature of the disease may be partly attributable to herpesvirus-induced endothelial maladaptation." Preprint | Thread Nutrients Nutrition and Chronobiology as Key Components of Multidisciplinary Therapeutic Interventions for Fibromyalgia and Associated Chronic Fatigue Syndrome: A Narrative and Critical Review - Carrasco-Querol et al. Reviewed evidence on diets, nutrients, gut microbiota and sleep. Article | Thread Fatigue: Biomedicine, Health & Behavior A systematic scoping review of how people with ME/CFS use the internet - Shortland et al. The review concludes: "The internet is a valued source of support for people with ME/CFS in terms of sharing of experiences, legitimacy, empowerment, and integration into people’s everyday lives." Article | Thread CFP MFC Patient experiences with requests for medical assistance in dying. Perspectives of those with complex chronic conditions - Fruhstrofer et al. The authors interviewed 16 patients who have complex chronic conditions (CCCs), such as fibromyalgia and chronic fatigue syndrome, when they request medical assistance in dying in Canada. Article | Thread Clinical Neurophysiology Practice The role of clinical neurophysiology in the definition and assessment of fatigue and fatigability - Tankisi et al. This review provides "a comprehensive and objective framework to help identify potential causes of fatigue and fatigability in a given disease condition. It also considers the effectiveness of neurophysiological tests as objective biomarkers for its assessment". Article | Thread Long Covid research Journal of Health Psychology Confirmation of COVID-19 infection status and reporting of Long COVID symptoms in a population-based birth cohort: No evidence of a nocebo effect — Catherine IA Macleod-Hall et al. “Confirmation of COVID-19 infection by positive test was not associated with increased reporting of Long COVID symptoms. Furthermore, there was no clear evidence of moderation by either sex or anxiety. There was no evidence that a COVID-19 diagnosis exerted nocebo effects contributing to the aetiology of Long COVID.” Article | Thread Lancet: eClinicalMedicine Long COVID is associated with severe cognitive slowing: a multicentre cross-sectional study — Sijia Zhao et al. “We identified pronounced cognitive slowing in patients with PCC, which distinguished them from age-matched healthy individuals who previously had symptomatic COVID-19 but did not manifest PCC.” Article | Thread Brain Sciences Frequency, Characteristics, and Correlates of Cognitive Complaints in a Cohort of Individuals with Post-Acute Sequelae of COVID-19 — Muschel et al. “in this cohort, there was a significant risk that participants under-reported, rather than over-reported, cognitive difficulty that was detected on NP testing. While this would suggest that cognitive screening is necessary for patients with PASC, the issue is complicated by the fact that typical neurocognitive screening tests, such as the MoCA, are unreliable in detecting mild to moderate NP difficulty” Article | Thread Nature Scientific Reports Low handgrip strength is associated with worse functional outcomes in long COVID — do Amaral et al. “This study showed that an important proportion of individuals with long COVID have decreased HGS. In addition, dynapenia was associated with worse lung function test scores and lower respiratory muscle strength, which ultimately negatively impacted the walked distance on the 6MWT after 120 days from hospitalization.” Article | Thread Preprint: MedRxiv Repeated Hand Grip Strength is an Objective Marker for Disability and Severity of Key Symptoms in Post-COVID ME/CFS — Anna Paffrath et al. “While HGS was similarly impaired in both PCS and ME/CFS patients, the associations between HGS and the severity of symptoms and disability revealed striking differences. We observed significant correlations of HGS parameters with physical function across all patients, but with the key symptoms PEM, fatigue, cognitive impairment, and autonomic dysfunction in ME/CFS patients only.” Article | Thread Viruses AC-73 and Syrosingopine Inhibit SARS-CoV-2 Entry into Megakaryocytes by Targeting CD147 and MCT4 — Spinello et al. “Altogether, our data indicate the glycolysis-related MCT4 as a potential new target for SARS-CoV-2 entry into megakaryocytes and platelets in vivo, which may be involved in the hypothetical reservoir for SARS-CoV-2 described in long COVID” Article | Thread Clinical Therapeutics Low-Dose Naltrexone Improves post–COVID-19 condition Symptoms — Leonardo Tamariz et al. “Sixty-seven percent reported improvement in the low-dose naltrexone group compared with 61% taking amitriptyline and 41% receiving physical therapy alone. Patients taking duloxetine only reported improvement in 35%.” Article | Thread Preprint: MedRxiv Effect of Paxlovid Treatment on Long COVID Onset: An EHR-Based Target Trial Emulation from N3C — Alexander Preiss et al. “Paxlovid treatment did not have a significant effect on overall PASC incidence (relative risk [RR] = 0.99, […]). However, its effect varied across the cognitive (RR = 0.85 […]), fatigue (RR = 0.93 […]), and respiratory (RR = 0.99 […]) symptom clusters, suggesting that Paxlovid treatment may help prevent post-acute cognitive and fatigue symptoms more than others.” Article | Thread ................ S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
