This thread has a Science for ME 'News in Brief' post for each week in November 2023 by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 30th October 2023 News and advocacy UK DecodeME There is about week left for people in the UK over 16 with an ME/CFS diagnosis to sign up and complete the questionnaire for this large genetic study. Contribute your experiences before 5pm on 15th November. Those invited to provide a spit sample have until late January to return them. Take part | Thread Sweden Health region Västerbotten ran a research project without an ethics permit on digital ME rehabilitation, according to the Appeals Board for Ethics Review which has therefore pressed charges. Article from Läkartidningen l Thread USA - Massachusetts ME/CFS & FM Association A recording of this group's 2023 annual meeting, featuring guest speaker Ed Yong, is now available. Video | Thread Complaints to Cochrane The Science for ME committee has submitted a five part complaint to Cochrane about the Editor-in-Chief's refusal to withdraw the 2019 review "Exercise therapy for Chronic Fatigue Syndrome", the handling of delays to the new review, and the responses to our letters. The latest update to the petition includes a summary of the complaints. Complaint letter | Petition update | Thread Long Covid: An Anthropological Perspective Medical anthropologist Dr. Emily Mendenhall interviews Dr. Anthony Fauci, former head of the National Institutes of Allergy and Infectious Diseases at the NIH, on his perspectives on Long Covid. Article | Thread .............. Fundraising Trial by Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Fall 2023 A new crowdfunding via Berkeley to secure David Tuller's academic position till June 2024. The aim is to raise $65,000 by November 30. There is still a lot of important work to do and to report on, for instance with the entrance of Long Covid. "It was immediately apparent that the same cabal of researchers I'd spent years criticising were seeking to colonise the field of Long Covid with the same egregiously flawed arguments and research strategies". Crowdfunding l Thread ......... Coming events UK APPG The next All Party Parliamentary Group on M.E. meeting is on Wednesday, 15 November 2023 from 1.30-2.30pm. The MEA has a template letter for inviting your MP to attend. Article | Thread Bateman Horne Center - Free Online Support Groups Tuesday, November 14, 1:00 - 2:00 PM Mountain Time Topic: Communication & Relationships when Chronically Ill Tuesday, November 21, 1:00 - 2:00 PM Mountain Time Topic: Self-trust (see thread for times in your time zone) Event Calendar | Thread #MEAction - Partner Caregiver Support Call Sunday, November 5 3:00 - 4:00 PM Eastern time Zoom call for partner caregivers of people with ME or Long COVID. (see thread for time in your time zone) Announcement | Thread ......... Research news UK MEA and MERUK The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic test for ME/CFS Dr Fatima Labeed et al. will apply their initial research findings of electrical differences in ME/CFS blood cells to larger samples and research cellular changes leading to these differences. Article | Thread ME Research UK has awarded funding to Dr Zack Shan at the University of the Sunshine Coast for a new study using MRI to assess brain neuroinflammation and the lymphatic system in ME/CFS. Article | Thread Open Medicine Foundation has announced their first clinical trial for ME/CFS. The Life Improvement Trial (LIFT) is a "randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination." Announcement | Thread USA - NIH The NIH ME/CFS Newsletter for November 2023 has been published. Topics include the ME/CFS Research Roadmap, scheduled public webinars, and how you can get involved and provide feedback. The final roadmap will be presented at the NANDS Council meeting on May 15-16, 2024. Newsletter | Thread Podcast TLC Sessions - Living with Long Covid: Episode 65: PolyBio Dr. Amy Proal "In this week's episode we talk to Dr. Proal about the current most prominent mechanistic theory of viral persistence in tissues, PolyBio's research into anti-viral therapeutics, and SARS-COV2 strategies that could help us prevent Long Covid, rather than having to constantly clear up the increasing residue for years to come". Podcast l Thread Trial by Error by David Tuller Letter on Inflated FND Prevalence Rates Accepted for Publication The journal Neuroimage: Clinical has accepted a letter from David Tuller et al criticising a paper citing a misrepresentation of the prevalence of functional neurological disorder (FND). Link to full preview in article. Article l Thread ......... Research ME/CFS research European Respiratory Journal Investigation into the Plasma Proteome Signature in ME/CFS - Systrom et al. Venous plasma proteomes from 19 ME/CFS patients and 9 controls were analysed. "The study highlighted potential biomarkers for ME/CFS, the top candidates of which are involved in inflammation, cellular energy metabolism, and Vitamin B12 transport." Article | Thread Medical Gas Research Successful treatment of ME/CFS using hydrogen gas: four case reports - Hirano et al. Based on the hypothesis that hydrogen has anti-fatigue effects by protecting mitochondria, four patients were treated by inhaling 6–7% H2 gas for several hours a day for some weeks and reported some improvement in fatigue and other symptoms. Article | Thread IBR Neuroscience Reports Repetitive Transcranial Magnetic Stimulation Ameliorates Symptoms in Patients with ME/CFS, Kunihisa Miwa et al. Some patients reported some small improvements after 2 weeks of treatments but there was no control group and no long term follow up. Article | Thread European Respiratory Journal Exercise capacity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) treated with long-term pyridostigmine This abstract of the research of David Systrom, which was presented at the 2023 ERS International Congress, reports that long-term treatment with pyridostigmine (Mestinon) improved aerobic capacity in ME/CFS. Forum members, however, have raised critical questions of how the results were analyzed. Abstract | Thread Health Expectations ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services - Melby & das Nair This study explored unsatisfactory experiences of ME/CFS patients with the healthcare system in Norway. The authors argue that healthcare providers' lacking knowledge of the condition and a lack of patient involvement may explain the poor experiences. Article | Thread Frontiers in Neurology Focus on Post-Exertional Malaise when approaching ME/CFS in specialist healthcare improves satisfaction and reduces deteriorations - Wormgoor & Rodenburg The authors analyzed two online cross-sectional surveys covering specialist healthcare services for ME/CFS patients at rehabilitation institutes in Norway. Failure to address PEM roughly doubled the risk of health deterioration following rehabilitation. Article | Thread Long Covid research Nature Immunology SARS-CoV-2 viral persistence in lung alveolar macrophages is controlled by IFN-γ and NK cells — Huot et al. “we detected viral RNA in [Broncho-Alveolar Lavage Fluid] of 17 of 25 infected macaques and viral antigens in the BALF [macrophages] of 20 of 25 macaques at 6 months [post infection], with the virus in the BALF Mac capable of replication up to at least 221 [days post infection], even when it was undetectable in nasopharyngeal and tracheal swabs.” “It’s likely that other cellular reservoirs in the lung exist, but our data suggest that SARS-CoV-2 exploits [macrophages] as a key repository for dissemination and long-term persistence.” Article | Thread Cell Reports Medicine Sequential multi-omics analysis identifies clinical phenotypes and predictive biomarkers for long COVID — Kaiming Wang et al. “Network analysis reveals sustained inflammatory response, platelet degranulation, and cellular activation during convalescence accompanied by dysregulation in arginine biosynthesis, methionine metabolism, taurine metabolism, and tricarboxylic acid (TCA) cycle processes. Furthermore, we develop a prognostic model composed of 20 molecules involved in regulating T cell exhaustion and energy metabolism that can reliably predict adverse clinical outcomes following discharge from acute infection with 83% accuracy and an area under the curve (AUC) of 0.96.” Article | Thread Annals of Internal Medicine Effectiveness of Nirmatrelvir–Ritonavir Against the Development of Post–COVID-19 Conditions Among U.S. Veterans — George N. Ioannou et al. “Out of 31 potential PCCs, only combined thromboembolic events seemed to be reduced by nirmatrelvir–ritonavir.” Article | Thread Preprint: BioRxiv Characterization of Unique Pathological Features of COVID-Associated Coagulopathy: Studies with AC70 hACE2 Transgenic Mice Highly Permissive to SARS-CoV-2 Infection — Aleksandra K Drelich et al. “We have also demonstrated that the fine balance between coagulation and fibrinolysis could be readily impaired and identified a possible role of Annexin A2 in coagulopathy developed after SARS-CoV-2 infection.” Article | Thread Physiological Reports Baroreflex sensitivity is impaired in survivors of mild COVID-19 at 3–6 months of clinical recovery; association with carotid artery stiffness — Prachi Srivastava et al. “The COVID survivor group showed significantly higher carotid β stiffness index [7.16 (5.75–8.18) vs 5.64 (4.34–6.96); (p = 0.0004)], and pulse wave velocity β (PWVβ ) [5.67 (4.96–6.32) m/s vs 5.12 (4.375.41) m/s; p = 0.0002].” Article | Thread BMC Public Health “It was almost like it’s set up for people to fail” A qualitative analysis of experiences and unmet supportive needs of people with Long COVID — McNabb et al. “We propose a five-pronged policy approach to support persons with Long COVID. These overarching recommendations are (1) improve public awareness of Long COVID; (2) improve clinical care quality and access; (3) implement additional school and workplace accommodations; (4) strengthen socioeconomic benefits and social services; and (5) improve research on Long COVID.” Article | Thread Social Science & Medicine Return-to-work with long COVID: An Episodic Disability and Total Worker Health® analysis — Stelson et al. “Qualitative findings indicate needs for workplace accommodations tailored to fluctuating symptoms, continuously re-evaluated by workers and supervisors together. Reductions in medical barriers to access work accommodations is also critical since many medical providers remain unaware of LC, and workers may lack a positive COVID test result.” Article | Thread .......... S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 6th November 2023 Part 1 of 2 News and advocacy UK DecodeME - Last few days to join the research The questionnaire part of this large genetic study must be submitted before Wednesday 15th November at 5pm. That is also the last day for requesting a replacement spit kit. Note that the website with the questionnaire will be closed for maintenance on 14th November between 7.30pm and 10.30pm. Those sent spit kits will have until late January to return them. Take part | Thread Cochrane Exercise therapy for ME/CFS reviews. An update by Hilda Bastian on the now resumed process towards a new review has been published. It includes a list of reasons for the delay, including halting progress for over a year while many committees discussed a complaint from people wanting the 2019 to stay and the new review process to be cancelled. Cochrane update | Thread Science for ME complaint Cochrane has confirmed that they have received our complaint about their response to our letters. The petition remains open, with an update including the listing more organisations signing in support. Petition | Thread USA - Long Covid Moonshot Day November 14th 2023 Calling for $1 billion annual NIH funding for long Covid research for the next ten years Site | Thread USA - NIH Monica Bertagnolli, M.D., takes the helm at NIH Dr. Bertagnolli is the new director of the National Institutes of Health, the United States biomedical research agency and largest public funder of biomedical research in the world. Announcement | Thread UK The ME Association writes to the President of the Royal College of Psychiatrists regarding their website information on ME/CFS Dr Charles Shepherd has written an excellent letter pointing out serious misinformation on the RCPsych website and provides them with suggestions for improvement and links to the NICE guideline and DHSC delivery plan. Article with letter | Thread #MEAction Canary Corps – New Grassroots Program Coming Soon A new program called Canary Corps will be launched in the United States in early 2024. It will help people with ME, Long Covid, and other infection-associated chronic illness find and access local services and support. Article | Thread France The French Committee on the Monitoring and Anticipation of Health Risks (COVARS) published a report on long Covid that was commissioned by the Ministry of Health and the Ministry of Research. The report calls for broader recognition of post-acute infection syndromes and more research into these conditions. Article | Thread UK Government The Department of Health and Social Care has issued a brief bulletin saying that the public consultation on the Interim Delivery Plan for ME/CFS is now closed. It received over 3,500 responses. A summary will be published and will be used to develop the final delivery plan. Thread with copy of document Long Covid Advocacy A Very British Consultation... A response to the DHSC (Department of Health & Social Care) Interim Delivery Plan on ME/CFS. Some of the concerns mentioned are the plan's reliance on soft power, the slow pace, the lack of legislation, and no planning for the influx new ME/CFS cases caused by Covid. Article | Thread ........ Articles and other media CNN Podcast: The Long Journey to Treat the Long Covid Brain Dr. Sanjay Gupta interviews David Putrino, director of rehabilitation innovation for the Mount Sinai Health System about research into biomarker for Long Covid and how patients can be helped. Podcast and transcription l Thread Scientific American What Tony Fauci Told Me About Long COVID and Other Postviral Illnesses Medical anthropologist and professor Emily Mendenhall has interviewed Anthony Fauci as part of a book project on postviral illnesses such as long COVID and ME/CFS. In the interview Dr. Fauci says postviral illnesses were on his radar 50 years ago but fell by the wayside. He now emphasises the importance of doing more research into postviral syndromes. Article l Thread Sweden The news outlet "Dagens ETC" writes about reactions from ME patients in support of a controversial doctor after ETC having investigated him for using off label treatments. Dr. Sven Britton from the Bragée clinic has written an opinion piece criticising health region Stockholm's decision to close clinics for ME. He describes ME as a functional illness but also says CBT doesn't work. He further claims a combination of pacing and GET can be curative. He asks for more research and that the clinical experience from health personnel like him doesn't get lost with the closure of the clinics. Patient advocate Mitt Eremitage has written a critique of Dr. Britton's opinion piece. "I understand that Britton is trying to fill the concept of functional disease with a different content regarding ME than it usually has. But why even place the disease in a compartment that goes against the biomedical research and the conclusions of heavy institutions after reviews if this research?" ETC (paywalled) l Opinion piece l Mitt Eremitage article l Thread BMJ Editorial Is NICE losing its standing as a trusted source of guidance? Retired vascular surgeon Jonathan Michaels says "Recommendations must better reflect societal values and preferences." He comments on several NICE guidelines he disagrees with, and says: "NICE’s rejection of graded exercise therapy for [ME/CFS] has been challenged by many specialists". Article | Thread .............. Fundraising Trial by Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Fall 2023 A new crowdfunding via Berkeley to secure David Tuller's academic position till June 2024. The aim is to raise $65,000 by November 30 and approximately 30% of that goal has been reached. There is still a lot of important work to do and to report on, for instance with the entrance of Long Covid. Crowdfunding l Thread ............ Coming events Bateman Horne Center - Lunch and Learn Topic: Anti-Inflammatory Nutrition Thursday, November 16, 11:30 AM - 1:30 PM Mountain Time (see thread for time in your time zone) Announcement | Thread #MEAction "Pillow Writers: An ME/CFS Writing Group" Thursday, November 16, 11:00 am – 12:00 pm Pacific Time Weekly online session for people with ME who are interested in writing. (see thread for time in your time zone) Details | Thread .......... Go to the next post for sections on research.
Week beginning 6th November 2023 Part 2 of 2 Research recruiting participants Science for ME has a subforum for clinicial trials and other studies that are currently or will soon be recruitiing participants. Such studies from around the world are often registered at the Clinical Trials website run by the US NIH. A collection of studies related to ME/CFS or Long Covid has been posted on the forum this week. They include: Germany A feasiblity trial of home direct current transcranial stimulation Details | Thread Trial of the drug Vericiguat versus placebo in patients with post-COVID-19 syndrome with fatigue. Details | Thread Cohort study of people under 25 with ME/CFS to be studied long term. Details | Thread Observational study of HBOT (Hyperbaric Oxygen Therapy) for ME/CFS Details | Thread Immunoadsorption vs. Sham Treatment in Post COVID-19 Patients With CFS Details | Thread Registry and biobank for ME/CFS Details | Thread USA Tracking CFS patients' experiences of taking part in clinical trials Details | Thread The Long COVID-19 Wearable Device Study: tracking up to 100,000 people with Long Covid or other causes of post-exertional malaise, plus smaller study of patients learning to use wearables for tracking and reducing PEM. Details | Thread Rapamycin Pilot Treatment Trial for ME/CFS "Rapamycin therapy inhibits mTOR and reduces autophagy disruption. We believe that a subset of patients may have chronic mTOR activation that can lead to the symptoms of ME/CFS. By taking rapamycin, the mTOR inhibitor, we hope that these people may see a significant reduction in symptoms." It's planned for 100 participants and one must be a patient under the care of Dr. Kaufman, Dr. Peterson, Dr. Chedda or Dr. Grach for enrolment. Details l Thread Poland Double blind trial of pregabalin versus placebo, each with or without rehabilitation in patients with CFS following Covid infection. Details | Thread Denmark Evaluating a diagnostic clinic for Functional Somatic Disorders Details | Thread UK Validation of the Illness Related Distress Scale in people with long term conditions Details | Thread Exploring worry in CFS/ME Details | Thread ........... Research ME/CFS research MedRxiv preprint A systematic review of quantitative EEG findings in Long COVID, Fibromyalgia and CFS - Silva-Passadouro et al The authors suggest these are central sensitisation syndromes. 17 studies included. "There was a general trend for decreased low-frequency EEG band activity (delta, theta, and alpha) and increased high-frequency EEG beta activity in FMS, whereas an opposite trend was found in CFS/ME." Mixed results for Long Covid. Preprint | Thread The American Journal of Gastroenterology Prevalence and Predictive Factors of Small Intestinal Bacterial Overgrowth in Patients with Chronic Fatigue Syndrome - Karhu et al The researchers reviewed retrospectively charts from 479 CFS patients referred for hydrogen/methane breath testing and found that small intestinal bacterial overgrowth (SIBO) was highly prevalent. Older age and comorbid IBS diagnosis further increased the odds for a positive test. Article l Thread Heliyon (Preprint) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): The Biology of a Neglected Disease - by Arron, Pretorius et al From the abstract: "It is hypothesised that environmental insults (such as acute infection, mainly viral) or stress in genetically susceptible individuals may trigger the development of ME/CFS. These insults result in acute inflammatory responses, along with aberrant immune activation. A spiralling disruption of homeostasis promotes subsequent patho-mechanisms including gut dysbiosis and systemic inflammation, and eventually a pathological clotting system, chronic endothelialitis, vasoconstriction, and hypoxia. Additionally, dysfunctional energy metabolism including oxidative stressis also present in the development of ME/CFS." Paper l Thread Australian Health Review The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia - Zhao et al. Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09billion, with average annual total costs of $63,400/patient Article | Thread Frontiers in Neurology Case Report: Recurrent cervical spinal stenosis masquerading as ME/CFS with orthostatic intolerance, 2023, C. Edwards, P. Rowe et al One of three cases previously reported had a recurrence of symptoms which improved with further surgery. Article | Thread SAGE Open Medicine Body reprogramming for fibromyalgia and central sensitivity syndrome: A preliminary evaluation - Lanario et al. The authors report on 198 patients with central sensitivity syndrome who were enrolled in a body reprogramming course designed for patients living with medically unexplained symptoms. Article | Thread Journal of Evaluation in Clinical Practice Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study - Hasan et al. Researchers from McMaster University interviewed 33 people who had ME/CFS but who reported (partial) recovery. Recovery Norway helped with the recruitment of participants. Article | Thread Psychological Medicine Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis - Kuut et al. The Dutch research team of Hans Knoop performed a meta-analysis of 8 of their own cognitive behavioral therapy (CBT) trials. Patients who were younger, reported less functional impairments, had a fluctuating activity pattern, and more self-efficacy benefitted more. Article | Thread Journal of Translational Medicine Increased risk of chronic fatigue syndrome following infection: a 17-year population-based cohort study - Chang et al. This study used Taiwan’s National Health Insurance Research Database and found that that infection with common pathogens is associated with an increased risk of developing CFS. Article | Thread Long Covid research Lancet: eBioMedicine Probing long COVID through a proteomic lens: a comprehensive two-year longitudinal cohort study of hospitalised survivors — Xiaoying Gu et al. “This study uncovered changes in proteomic landscape across 2 years after SARS-CoV-2 infection which is the longest one to the best of our knowledge. The results indicated four major recovery modes of different biological process.” Article | Thread ScienceOpen Preprints Physical exertion worsens symptoms in patients with post-COVID condition : Post-exertional malaise in patients with post-COVID condition — Breedveld et al. “The slogan 'Exercise is Medicine' does not apply to all patients with post-COVID condition. A personalized approach aimed at preventing post-exertional malaise appears to be the right approach for this patient population for now. Further research is needed to understand the specific mechanisms underlying a limited exercise capacity and post-exertional malaise in patients with post-COVID condition and ME/CFS.” Article | Thread PM&R Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of mental health symptoms in patients with post-acute sequelae of SARS-CoV-2 infection (PASC) — Abby L. Cheng et al. “In summary, new mental health symptoms can be caused by PASC, worsening of pre-existing mental health symptoms can be caused by PASC, and mental health conditions are not, in and of themselves, the overall cause of PASC.” Article | Thread Zenodo "The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences — Hammer et al “… for PCS patients with PEM, even minimum requirements for rehabilitation measures can lead to overload and aggravation.” “Aims and measures should be individually adapted, and the focus should be on pacing, disease coping and management.” [Article in German] Article | Thread Preprint: MedRxiv First-in-human immunoPET imaging of COVID-19 convalescent patients using dynamic total-body PET and a CD8-targeted minibody — Negar Omidvari et al. “This study revealed significant differences in the bone marrow CD8 [T cell] concentrations of COVID-19 convalescent patients compared to controls” Article | Thread Infection Blood T cell phenotypes correlate with fatigue severity in post-acute sequelae of COVID-19 — Pink et al. “In conclusion, subjective disease burden as measured by PROMs was independent of disease severity. Our study identified an independent and direct correlation between severity of fatigue, as the most reported PASC symptom, and blood T cell counts paving the way for a clinically widely applicable blood biomarker of PACS-associated fatigue.” Article | Thread Frontiers in Immunology From aging to long COVID: exploring the convergence of immunosenescence, inflammaging, and autoimmunity — Müller and Di Benedetto “With a focus on understanding the immunological changes in the context of aging, we seek to provide insights into how immunosenescence and inflammation contribute to the emergence and progression of autoimmune disorders in the elderly and may serve as potential mediator for Long COVID disturbances.” Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 13th November 2023 News and advocacy Trial by Error by David Tuller Cochrane Ends Silence on ME/CFS Exercise Review Developments A writeup about the update after over two years of silence from Hilda Bastian, head of the Independent Advisory Group about the development of a new Cochrane review on exercise therapy as treatment for CFS. Tuller writes: "I am perplexed that anyone would determine that the only or least the best way to handle this difficult situation was to ghost the entire patient community for more than two years. Beyond being unacceptable, this strategy was certainly not the way to build trust and confidence in the process going forward." Article l Thread Science for ME complaints to Cochrane As reported in previous weeks, S4ME submitted a formal set of complaints to Cochrane about the Editor-in-Chief's dismissive responses to our requests and refusal to withdraw the 2019 review. The Cochrane Head of Governance has replied with a refusal to follow their stated complaints procedure, citing lack of resources, and stating that their decision to keep the 2019 review will not be changed. Petition The S4ME petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" remains open, with 9500 signatures, 560 comments and regular updates. More organisations are adding their support to our letters. The campaign continues. S4ME letters and replies | Petition update | Discussion thread South Africa The news site IOL reports on "SICK Pride", a pyjama picnic for people with chronic illnesses. "The event is organised by SICK (Society for the Inclusion of Chronic Knowledge) and supported by MELCuSA (ME and Long Covid Unite South Africa, formerly the ME CFS Foundation South Africa) and endorsed by the World ME Alliance. Co-founder Mlindeni Gabela said the goal was to make “invisible illnesses” visible in South Africa." Article l Thread Europe The Europeans Medicine Agency (EMA) organized a workshop on "generating clinical evidence for treatment and prevention options for long-COVID / post-acute sequelae condition (PASC)" with speakers such as Daniel Altmann and Laurie Gutman. A recording of the workshop will be made available at a later stage. Article | Thread UK parliament The All party parliamentary group on ME/CFS has posted a brief video report on their latest meeting and minutes of their June meeting. Minutes | Thread #MEAction - Check out the Updated, Expanded, Revamped MEpedia! The MEpedia site has been updated and expanded. Article | Thread .............. Articles Sweden Excellent editorial in the local newspaper Södermanlands Nyheter about the severity of ME/CFS, the lack of research and treatments and the increasing amount of post infectious illnesses due to the pandemic. The editorial calls for a national knowledge center for ME/CFS and other post infectious illnesses dedicated to research and the development of treatment guidelines. Editorial l Thread Norway The public broadcaster NRK has written about similarities between ME and Long Covid. ME patient Heidi S. Økland deteriorated after infection with Covid. She warns against repeating mistakes done towards ME patients such as attempting to treat Long Covid with rehabilitation. The Norwegian Covid Association says one should not equate the two diagnoses, but rather see ME as one of several serious sequelae of Covid. The Norwegian ME Association calls for more research. Article l Thread The Post Here's why you really don't want to get Long Covid Opinion piece from New Zealand by science communicator and ME + Fibromyalgia sufferer Louise Thornley on the impact of Long Covid. "This life-changing sickness stops us from doing what we want. The loss is profound." Opinion piece l Thread UK Braintree & Witham Times Witham author Jessica Taylor-Bearman releases third book "Jessica Taylor-Bearman, from Witham, is a published author who will be concluding her ‘A Girl’ memoir series with the release of the third instalment, A Girl Beyond Closed Doors, released yesterday. The book is a personal and heart-wrenchingly honest depiction of Jessica’s life with the chronic illness, myalgic encephalomyelitis (ME), which she was diagnosed with at the age of 15 years." Article l Thread ............. Resources Bateman Horne Center - Long COVID Treatment, Tips, and Strategies This recording is a presentation by Lucinda Bateman (25 minutes, no transcript). Video | Thread UK BACME, the British Association of Clinicians in ME/CFS, has published a 55 page updated version of their Severe ME/CFS Shared Clinical Practice Guide to comply with the 2021 NICE Guideline for ME/CFS. It includes sections on diagnosis, accessible care and the therapeutic approach. Thread discussion includes concerns about unevidenced theorising and a 'pacing up' approach. BACME guide | Thread ......... Fundraising Trial by Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Fall 2023 A new crowdfunding via Berkeley to secure David Tuller's academic position till June 2024. The aim is to raise $65,000 by November 30 and over 60% of the target is achieved so far. There is still a lot of important work to do and to report on, for instance with the entrance of Long Covid. Crowdfunding l Thread ......... Coming events Massachusetts ME/CFS and FM Association - Sunday Conversations Topic: "What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness" Sunday, November 19, 4:00 PM Eastern Announcement | Thread #MEAction - Canary Corps Community Education Workshop Wednesday, December 6, 1 PM Pacific / 4 PM Eastern Announcement | Thread USA - NIH ME/CFS Research Roadmap Webinar on Chronic Infections Thursday, November 30, 8 AM Pacific / 11 AM Eastern This webinar will be recorded and posted online, with a transcript, after the event. Agendas | Registration | Thread USA - CDC ME/CFS Stakeholder Engagement and Communication (SEC) conference call Monday, December 18, 3:00 pm Eastern Time Agenda includes research updates from Vicky Whittemore, Bhupesh K Prusty, and Dawei Li. Details | Thread .......... Research news and commentary UK The research group led by Karl Morton at Oxford university has tweeted that they have received funding for a Raman microscope that will enable them to continue their research into single cell metabolism. Thread UK DecodeME "A HUGE thank you to the more than 26,000 people who completed the questionnaire and over 21,000 people invited to provide DNA (receipt of samples closes on 31 January 2024). We believe we will be able to run a high quality analysis on this size of cohort." Thread Trial by Error by David Tuller Yet More Stupidity from the Dutch CBT Fan Club Tuller offers a critique of a meta-analysis of studies on CBT as ME/CFS treatment by among others Dr. Kuut and Professor Knoop. "All eight studies included in the meta-analysis were done by investigators from the same group of researchers that includes Dr Kuut and Professor Knoop. Given the background of both the authors and the journal, low expectations for this meta-analysis would be warranted. And such low expectations are rewarded". Article l Thread .............. Research ME/CFS research Research Square What are medical students taught about Persistent Physical Symptoms? A scoping review of the literature - Catie et al. In this preprint the research team of Chris Burton concludes that there is a widespread lack of teaching and learning on persistent physical symptoms (PPS). PPS are viewed as awkward by educators and learners. Learners think that there is no science behind the symptoms. Article | Thread Long Covid research iScience Understanding COVID-19 progression with longitudinal peripheral blood mononuclear cell proteomics: Changes in the cellular proteome over time — Giuseppe Gianini Figueirêdo Leite et al. “fatty acid metabolism, OXPHOS, glucose metabolism disorder, and insulin resistance, remained altered […] consistent with previous reports on [long COVID] showing a chronic and self-perpetuating metabolically imbalanced non-resolving condition defined by mitochondrial dysfunction” Article | Thread Journal of Neurology Persistent cognitive slowing in post-COVID patients: longitudinal study over 6 months — Martin et al. “Patients showed cognitive slowing indicated by longer reaction times compared to control participants (r = 0.51, p < 0.001) in a simple-response tonic alertness task and in all more complex tasks requiring speeded performance. Reduced alertness correlated with higher fatigue (r = − 0.408, p < 0.001). Alertness dysfunction remained unchanged at 6-month follow-up” Article | Thread Brain Communications MRI with generalized diffusion encoding reveals damaged white matter in patients previously hospitalized for COVID-19 and with persisting symptoms at follow-up — Boito et al. “In this cohort of patients who suffered from COVID-19 requiring hospitalization and with persisting symptoms at follow-up, we find general changes affecting the microstructure of the white matter of the brain, detectable with advanced dMRI.” Article | Thread BMC Infectious Diseases Epstein-Barr virus reactivation is not causative for post-COVID-19-syndrome in individuals with asymptomatic or mild SARS-CoV-2 disease course — Hoeggerl et al. “Our data reveal that 18% of all infections result in PCS, with symptoms lasting for up to one year.” ”In individuals with PCS, no EBV DNA could be detected. Furthermore, no differences in EBV specific antibody levels could be shown in PCS groups compared to non-PCS groups.” Article | Thread Nature Aging Senolytic therapy alleviates physiological human brain aging and COVID-19 neuropathology — Aguado et al. “Collectively our results demonstrate an important role for cellular senescence in driving brain aging and SARS-CoV-2-induced neuropathology, and a therapeutic benefit of senolytic treatments.“ Article | Thread Journal of Medical Humanities The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19 — Cheston et al. “Through a close reading of journalist Lucy Adams’s autobiographical accounts of long COVID, this article explores the interplay between individual illness narratives and the collective narrativizing (or making) of an illness.” Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 20th November 2023 News, advocacy and media USA Government Announcement of Intent To Establish Federal Advisory Committee on Long COVID by the Office of the Assistant Secretary for Health, Department of Health and Human Services. Appointees will come from a range of professions dealing with Long COVID and patients. Article | Thread UK Government Response to the Work Capability Assessment: Activities and Descriptors Consultation The report follows the public consultation and details planned changes to the rules and assessments for existing and new claimants. Report | Thread S4ME complaints to Cochrane On 20th November the Science for ME committee replied to Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team. The S4ME letter concludes: "Please confirm who has signed off on ignoring the complaints and the complaints procedure in this case and whether trustees have been fully informed of the issues." The petition remains open and further individuals and organisations continue to add their support. Letter | Petition | Thread David Tuller The launch of The Sick Times, a new online publication In this YouTube video David Tuller interviews the journalists Betsy Ladyzhets and Miles Griffis about their recently launched website "The Sick Times" on long Covid and related syndromes. From the website: "We report on the common, life-changing disease following Covid-19 infection that affects over 65 million people worldwide and can be fatal. Our coverage spans related infection-associated chronic conditions such as myalgic encephalomyelitis, dysautonomia, mast cell activation syndrome, and more. Unlike many outlets, we continue to report on the impact of the ongoing Covid-19 pandemic. No denial, minimizing, or gaslighting here." Interview l Website l Thread Aotearoa New Zealand ‘This isn’t a life’: The crushing burden of Long Covid Newsroom article describing interim findings from the NZ Long Covid Registry. Records that an informal Treasury report estimated the cost of Long Covid to the NZ economy at $140 million for 2022. Article | Thread UK ME Association Living with M.E. A Photographic Study by Jeremy Jeffs "Photographer Jeremy Jeffs [who has ME] is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E." Article | Thread Clinica Terapeutica In memory of Dr Derek Pheby by Bertelli et al. "His leadership of the ME Biobank and scientific coordination of EUROMENE demonstrated his commitment to pushing boundaries and fostering international collaborations." Article | Thread (members only) Finland The newspaper Iltalehti writes about Niko Suvisto who is suffering from severe ME, is bed bound and had to move in with his mother. Yet he has been rejected for benefits and has been declared fit for work. Article l Thread Bateman Horne Center has released a YouTube video titled "The Psychology of Chronic Illness: Making it Normal (Part 1: Development & Phases). From the presentation: "This presentation aims to reduce our suffering by identifying and validating these experiences through a brief review of some of the scientific research regarding the “normal” psychological and social aspects of chronic illness. Join Timothy Weymann, Licensed Clinical Social Worker, in this 6-part series, as he validates and normalizes the psychological and social aspects of chronic illness." Video l Thread Trial by Error by David Tuller Column in Time Magazine Calls for Halt to Biomedical Long Covid Research Tuller picks apart an opinion piece by Steven Phillips and Michelle A. Williams which argued against biomedical research into Long Covid. Tuller writes: "The authors provide no real evidence to support their assertion that there might be “nothing to find”—or at least, if there is something, that it cannot be identified with current technology. The latter sounds like this: “Gee, this is hard, let’s stop looking.” I have not previously heard this sort of defeatist view advanced as a reason to abandon biomedical research involving other complicated illnesses." Article l Thread ............ Fundraising Trial by Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Fall 2023 The final days of the crowdfunding via Berkeley to secure David Tuller's academic position till June 2024. The aim is to raise $65,000 by November 30. There is still a lot of important work to do and to report on, for instance with the entrance of Long Covid. Crowdfunding l Thread ............. Coming events USA NIH Conference Registration is open for the NIH ME/CFS Research Conference "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID,” on December 12-13, 2023 at NIH Campus in Bethesda, MD. This will be a hybrid in-person and online meeting. Details | Thread ......... Research news UK Sheffield study recruiting Investigating the presence of Micro Clots and other blood factors in people with ME/CFS - Caroline Dalton "We are looking for ME/CFS patients and healthy controls who are over 18, female or were assigned female sex at birth, and able to attend the laboratory in Sheffield between November 28th and December 8th 2023" Details | Thread UK DecodeME "We have now closed participant recruitment and it is no longer possible to complete our questionnaire. We are now moving onto the next crucial stage of the study. So, if you have been invited to the DNA stage, and have yet to return your spit kit, please do so by the 31 January 2024. The more samples we have the better the science will be!" Website | Thread .............. Research ME/CFS research Preprint Similar Patterns of Dysautonomia in Myalgic Encephalomyelitis/Chronic Fatigue and Post-COVID-19 Syndromes - Ryabkova et al About 30 each of ME/CFS, PCC and healthy controls were tested. "A similar pattern of HRV and baroreflex failure with signs of a pathological acceleration of age-dependant dysautonomia was identified in ME/CFS and PCC." Preprint | Thread University of Alberta Thesis: Chronic Fatigue Mechanisms in Autoimmune Diseases: Lessons from Primary Biliary Cholangitis and Systemic Sclerosis - Elezzab "This thesis provides an overview of the roles of metabolic dysfunctions, hypoxia responses, oxygen delivery problems, and immune system abnormalities in PBC and SSc individuals, as well as the similarities to findings in those with ME/CFS." Thesis | Thread Preprint IgG Antibody Responses to Epstein-Barr Virus in ME/CFS:Their Effective Potential for Disease Diagnosis & Pathological Antigenic Mimicry - Fonseca et al Used machine learning on data from another study and from a public database. "In conclusion, 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." Preprint | Thread Journal of Clinical Medicine A Quick and Practical Approach to Secure a Chronic Fatigue Syndrome Diagnosis: The Novel Functional Limitation Index - Corbalan et al. The authors propose an objective physiological parameter, the Functional Limitation Index or FLI, that describes the degree of functional impairment in a patient to support clinical suspicion of CFS. Article | Thread Psychological medicine Clinical outcomes, medical costs, and medication usage patterns of different somatic symptom disorders and functional somatic syndromes: a population-based study in Taiwan - Wu et al. This study used Taiwan's National Health Insurance (NHI) claims database to investigate the impact of somatic symptom disorders (SSD) and functional somatic syndromes (FSD). All-cause mortality and medical costs were significantly higher for all SSD/FSS compared to controls. Article | Thread Long Covid research Nature Scientific Reports Dysregulations in hemostasis, metabolism, immune response, and angiogenesis in post-acute COVID-19 syndrome with and without postural orthostatic tachycardia syndrome: a multi-omic profiling study — Mahdi et al. “Collectively, our data show clear dysregulation of the molecular plasma profile in PACS patients. This is most pronounced in cardiometabolic proteins but also in cytokines and sphingolipids compared to healthy controls.” Article | Thread Journal of Imaging Retinal Microvasculature Image Analysis Using Optical Coherence Tomography Angiography in Patients with Post-COVID-19 Syndrome — Noor et al. “In this study, we have demonstrated that there were no statistically significant differences in the retinal microvasculature of patients with post-COVID-19 syndrome compared to healthy cohorts. Furthermore, no significant structural differences were observed in the macular retinal nerve fibre layer (RNFL) and ganglion cell layer (GCL) of the study participants.” Article | Thread Journal of Personalized Medicine Dysautonomia, but Not Cardiac Dysfunction, Is Common in a Cohort of Individuals with Long COVID — Tabacof et al. “The majority of individuals with Long COVID report shared symptoms and did not demonstrate cardiac dysfunction on echocardiography. Cardiac atrophy, as has been previously reported in association with other forms of dysautonomia, is a feature of Long COVID and correlates with reductions in physical activity levels and worse fatigue.” Article | Thread The Pediatric Infectious Disease Journal Long COVID in Icelandic Children: A Matched Cohort Study of Nonspecific Symptoms Following SARS-CoV-2 Infection — Thors “In conclusion, symptoms of Long COVID in children are evident and are likely to impact the quality of life of millions of children globally.” “The importance of further unraveling the pathophysiology of acute and long-term symptoms of the disease in children cannot be overstated.” Article | Thread Preprint: MedRxiv Quantitative susceptibility mapping at 7 Tesla in COVID-19: mechanistic and outcome associations — Catarina Rua et al. “The current study provides imaging evidence for mid-to-long term microstructural abnormalities in the brainstem following COVID-19 hospitalization. Our key findings are that in COVID-19 survivors, multiple regions of the medulla oblongata, pons and midbrain show magnetic resonance susceptibility abnormalities at a median time of 6.5 months from hospital admission.” Article | Thread .............. S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
