This thread has a Science for ME 'News in Brief' post for each week in May 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
Week beginning 29th April 2024 Part 1 of 2 News, advocacy and articles UK Parliament A Westmister Hall debate on ME/CFS introduced by Sajid Javid, MP, was held on 1st May. Points raised include the lack of implementation of the NICE guideline in many areas, inappropriate hospital treatment of severely affected people, and delay in publishing the government implementation plan set up by Javid two years ago. Action for ME report | Thread The Times Sajid Javid: patients with ME are being ‘dismissed’ by doctors Javid said he had heard “disturbing reports” that the final report would not be published until the end of the year, and “there is absolutely no time to waste”. "The debate was told that patients with ME are being “let down time and time again” by poor hospital care and a lack of specialist NHS services. Most NHS hospitals are also failing to follow official NICE treatment guidelines for those with the condition." Article | Thread UK Government Open Consultation Modernising support for independent living: the health and disability green paper The government has published a series of documents including a Green paper and evidence pack. There is consultation questionnaire about whether assessment for PIP should be based more on a diagnosed condition or on its functional impact; about the need for assessment and review for awarding PIP, and how to assess fluctuating conditions. This consultation closes at 11:59pm on 22 July 2024 Article with links | Thread TIME100 Health is a list of the most influential people in 2024 within health. Jamie Seltzer, scientific director of #MEAction made the list. In the presentation of Seltzer, TIME writes that U.S. medical schools have barely taught about ME/CFS and that Jamie Seltzer is working to change this. Further that "her overriding goal is ensuring that patients' voices are heard at all levels of the medical system, from academic research all the way to pimary-care doctors' office". Congratulations! ME/CFS was also a theme for another who made the list, Dr Avindra Nath for his NIH intra-mural ME/CFS study. Presentation of Seltzer l Presentation of Nath l Thread Economist Impact An incomplete picture: understanding the burden of long Covid A report on the impact of long Covid for the society, economy and health system. The report states "the burden is significant, with global incidence on par with other major NCDs and figures for the most affected minority comparable to that of dementia and HIV/AIDS". Charles Shepherd from the ME Association is among the contributors. As is Dr Al-Aly who says we cannot go into the next pandemic only to be surprised by a wave of chronic illness following it. Report l Thread UK - Hope 4 ME & Fibro NI has shared a statement of support from the Minister of Health for World ME day. Facebook | Thread UK - The Free Speech Union (which has a political agenda) has given a platform to Professor Paul Garner to promote the outdated psychosomatic view of ME/CFS and Long COVID in a talk titled "How We Learned to Question Medicine". He says his Long Covid was due to stress, nocebo and magnified "alarm systems"; praises the PACE trial; criticises ME organisations and advocates; and calls NICE ME/CFS guidelines a parody and a failure of patient involvement. Talk l Thread ............... Research news UK DecodeME launches data access process "86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects" "DecodeME is offering data access to other approved researchers until the end of the study in August 2025 in the hope that it will help accelerate research towards possible diagnostic tests and treatments for ME/CFS." "All applications will be reviewed by our Data Access Committee and will only be approved if they meet our high standards, are ethical and worthwhile." Article | Thread UK - University of Leicester Investigating the impact of ME/CFS and Long COVID on visual perception and sustained attention using Pupil Frequency Tagging and EEG This study is currently recruiting individuals with ME/CFS or Long COVID, over the age of 18, with normal or corrected-to-normal vision and no known neurological disorders such as epilepsy. Details | Thread Australia La Trobe University "Bottom-Up" study Study now recruiting in Victoria, funded by the Mason Foundation. Using new techniques, gut microbiota, circulating cytokines and immune cell bioenergetics will be evaluated. Information | Thread USA The Department of Defense has announced the approval of a clinical trial award of up to $13.1 million from the U.S. Department of Defense (DOD) to evaluate Bezisterim (NE3107) for treating neurological symptoms associated with long COVID. The trial is due to start early in 2025. Article | Thread ME Research UK PhD candidate Tina Katsaros – who is working alongside her supervisor Dr Sarah Annesley on a project funded by ME Research UK, has spoken about her research on an Australian radio show. Thread with links ME Research UK The Founders’ Science Writing Award asks early career scientists to write about what they believe is "The Future of ME/CFS Research”. The competition aims to give early career researchers the opportunity to develop skills in communicating science in a way that is accessible and engaging to the public. Closing date 25 July 2024 Details | Thread .............. Crowdfunding Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms" A new crowdfunding for David Tuller's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024. In an article with a recap of Tuller's work on this project through a whole decade, he writes: "It has been heartbreaking to witness so much unrelieved suffering over this period of time. But it has also been an honor and a privilege to have had the opportunity to pursue this work and investigate this decades-long medical and scientific scandal. The friendships and connections I have developed with patients, advocates and professional colleagues have enriched my life in so many ways, and I have been profoundly moved by the generous support I have received year after year." Crowdfunding l Article l Thread .............. Coming events USA - CDC Stakeholder Engagement and Communication (SEC) Call Monday, May 6, 3 PM Eastern Time Agenda items are "Updates from the CDC" (Elizabeth Unger) and “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” (Brian Walitt and Avindra Nath). See thread for Zoom link and other details. Thread International ME Awareness Day Sunday May 12th 2024 See your local ME organisation websites for information about events. UniteToFight UniteToFight is organizing an online ME/CFS and Long Covid conference on 15-16 May. Website | Thread .............. Go to the next post for part 2 Research
Week beginning 29th April 2024 Part 2 of 2 Research ME/CFS research American Journal of Physiology Phenylephrine Alters Phase Synchronization between Cerebral Blood Velocity and Blood Pressure in Chronic Fatigue Syndrome with Orthostatic Intolerance - Medow et al. A small study on ME/CFS patients with POTS compared to controls found CO2 and Acetazolamide were ineffective, but "PE [Phenylephrine] improved neurocognitive function in ME/CFS patients, perhaps related to improved neurovascular coupling, cerebral autoregulation and maintenance of CBV." Article | Thread Psychological Test Adaptation and Development Psychometric Properties of the REMAP Resilience Scale in a Norwegian Sample of ME/CFS Patients and Healthy Controls - Strand et al. This study tested the properties of a Norwegian-translated version of the REMAP resilience measure in a sample of ME/CFS patients. Validity proved to be good, while reliability was poor for two of the subscales. Article | Thread Long Covid research Nature Molecular Psychiatry Long COVID: plasma levels of neurofilament light chain in mild COVID-19 patients with neurocognitive symptoms — Gutman et al. "pNfL levels are significantly higher in long COVID patients with mild acute COVID-19 and neurocognitive symptoms when compared to HC" "Levels of pNfL were significantly higher in long COVID patients with cognitive impairment and fatigue when compared to long COVID patients without these symptoms" "poorer cognitive performance and worse fatigue status correlated with higher pNfL levels." Article | Thread Frontiers in Immunology Investigation into the restoration of TRPM3 ion channel activity in post-COVID-19 condition: a potential pharmacotherapeutic target — Sasso et al. "TRPM3 dysfunction in post-COVID-19 condition and ME/CFS participants suggests impairment in ion mobilization and consequently results in Ca 2+ signaling and cell homeostasis disturbance in both diseases. The NTX treatment restored TRPM3 ion channel activity in the post-COVID-19 condition group, facilitating Ca 2+ influx for intracellular signaling pathways." Article | Thread GeroScience Mitochondrial dysfunction in long COVID: mechanisms, consequences, and potential therapeutic approaches — Molnar et al. "This review aims to synthesize current findings related to mitochondrial dysfunction in long COVID, exploring its implications for cellular energy deficits, oxidative stress, immune dysregulation, metabolic disturbances, and endothelial dysfunction." Article | Thread Nature Scientific Reports Cognitive profile in multiple sclerosis and post-COVID condition: a comparative study using a unified taxonomy — Delgado-Alonso et al. "our study finds similar cognitive profiles in PCC and MS, which are mainly characterized by attention and processing speed deficits. Fatigue was more severe in PCC, but the relationship between fatigue and cognitive function was greater in the case of MS." Article | Thread Nature Scientific Reports PASC (Post Acute Sequelae of COVID-19) is associated with decreased neutralizing antibody titers in both biological sexes and increased ANG-2 and GM-CSF in females — Jansen et al. "In this cross-sectional study, we aimed to address systemic immune dysregulation as a mechanism driving PASC by analyzing serum antibody and cytokine responses." "With lower levels of virus neutralizing antibodies, this data suggests that PASC individuals not only have had a suboptimal antibody response during acute SARS‑CoV‑2 infection but may also have increased susceptibility to subsequent infections which may exacerbate or prolong current PASC illnesses." Article | Thread The Lancet Regional Health – Europe Impact of long COVID on health-related quality-of-life: an OpenSAFELY population cohort study using patient-reported outcome measures (OpenPROMPT) — Oliver Carlile et al. "we used data from 6070 participants who completed a baseline research questionnaire where 24.6% self-reported long COVID. In multivariable regressions, long COVID had a consistent impact on HRQoL, showing a higher likelihood or odds of reporting loss in quality-of-life (Odds Ratio (OR): 4.7, 95% CI: 3.72–5.93) compared with people who did not report long COVID." Article | Thread Journal of Nutritional Science and Vitaminology Eight-Week Creatine-Glucose Supplementation Alleviates Clinical Features of Long COVID — Jelena SLANKAMENAC et al. "The main outcomes were the concentrations of total creatine assessed by magnetic resonance spectroscopy (MRS) in the vastus medialis muscle and thalamus, frontal, precentral, paracentral, and parietal white and grey matter of the brain." "The effects of creatine (sole or co-administered with glucose) were superior compared to the control intervention for increasing creatine levels at several brain locations that includes both white and grey matter." Article | Thread Journal of Clinical Medicine The Role of Heparin in Postural Orthostatic Tachycardia Syndrome and Other Post-Acute Sequelae of COVID-19 — Gómez-Moyano et al. "In this article, we review the evidence surrounding the post-acute sequelae of COVID-19 and the potential benefits of the use of heparin, with a special focus on the treatment of postural orthostatic tachycardia syndrome." Article | Thread COVID Conceptual and Methodological Barriers to Understanding Long COVID — Jason and Hansel "The current article reviews methodological and conceptual issues that need to be considered in the development and use of a case definition for Long COVID and discusses the significance of appropriately phrasing questions assessing symptoms, specifying thresholds for when to count a symptom, determining how many symptoms should be required for a diagnosis, assessing symptoms over time, using multiple assessment modalities, and differentiating symptomatology from functionality." Article | Thread CROI Conference Poster Persistence of SARS-CoV-2 in Platelets and Megakaryocytes in Long COVID — Feifan, Salmon et al "In Long COVID, SARS-CoV-2 persists and replicates in MKs that in turn produce platelets containing virus. Circulating spike might be an additional sign of viral persistence that could serve as a Long COVID biomarker. The persistence of the virus could lead to abnormal platelet activation and formation of microclots, contributing to the various symptoms observed in Long COVID and to deregulation of serotonin uptake" Article | Thread Preprint: BioRxiv An amyloidogenic fragment of the SARS CoV-2 envelope protein promotes serum amyloid A misfolding and fibrillization — Asal Nady et al. "In combination with the reported amyloidogenic potential of several regions of the SARS-CoV-2 S protein and viral accessory proteins, there is a strong potential for amyloidosis to contribute to the systemic damage caused by COVID-19." "our results suggest two possible pathways of fibrillization due to SARS-CoV-2 infection that are both fueled by a heightened innate inflammatory response." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 6th May 2024 News, advocacy and articles UK The Times People with ME have been ignored for far too long - Sajid Javid, MP and former Secretary of State for Health and Social Care. "This Sunday, World ME Day, is an opportunity to refocus minds on how much more needs to be done... I announced two years ago a radical new approach to combating this condition. It would focus on diagnosis, research and care, and produce the first cross-government strategy on ME. Two years later, it remains unpublished." Article (paywalled) | Archived copy | Thread USA CDC ME/CFS webinar held on Monday, May 6 included an update from Dr Beth Unger on the CDC's work on medical education, collaborations with ME/CFS and Long Covid organisations, and raising public awareness about ME/CFS. Drs Walitt and Nath gave a brief overview of their work on post viral illnesses including the NIH intramural study and current work on Long Covid. Dr Unger transcript | Thread The Telegraph 'My friends just roll their eyes': Why long Covid is still a dirty word An article about the risk of Long Covid going the same way as ME, including comments from Dr. Nigel Speight who says GPs have abdicated their responsibility for ME and have pretended it doesn't exist. Article (paywalled) l Thread The PACE trial This $8 Million Medical Trial Is A Joke YouTuber and behavioural scientist Pete Judo presents the infamous PACE trial which he describes as "what is possibly the worst medical trial in modern history. Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people". Video l Thread Harvard Business Review Long Covid at Work: A Manager's Guide On adaptations that can be made by organisations to include employees with chronic illnesses: "While the focus of this article is long Covid, the recommendations here can help organizations manage the growing number of people with complex chronic illnesses. These include not only ones associated with long Covid, such as ME/CFS and POTS, but also other illnesses that share some symptoms with long Covid — for example, post-concussion syndrome, cancer, and multiple sclerosis." Article l Thread Austria Ärztekammer für Wien, the medical association in Vienna, will donate the entire proceeds from their "Vienna Doctors' Ball 2025“ to the WE&ME Foundation. The funds will thus be used for biomedical ME/CFS research. Article | Thread Aotearoa New Zealand Ahead of ME Awareness Day some articles on ME/CFS feature in regional newspapers. Otago Daily Times | The Star | Hawke's Bay Today | Thread ................ Research news ME/CFS Research Review Remarkable researchers hunting for ‘something in the blood’ of people with ME - Simon McGrath Dr Audrey Ryback and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells. They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function. Article | Thread USA NIH Symposium The recording of the NIH symposium held on 2nd May 2024 is now available. Run time 5 hours 39 minutes The purpose of the conference was to present findings the from ME/CFS study and the article Deep phenotyping of post-infectious ME/CFS by Walitt et al. to the ME/CFS community. Agenda | Video | Thread ............... Crowdfunding Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms" A crowdfunding for David Tuller's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024. Crowdfunding l Thread ............... Coming events #UniteToFight First International Conference on Long Covid and ME/CFS May 15 and 16 from 8:45 AM to 7:30 PM CEST. Online, free, recordings will be available afterwards on the website. 17 CME points. "The program includes presentations from leading experts such as Akiko Iwasaki, Ron Davis, David Putrino, Carmen Scheibenbogen, Danny Altmann, and Resia Pretorius, who will present their latest research and strategies to combat Long Covid and ME/CFS. Additionally, the conference will highlight contributions from the patient community to emphasize the importance of comprehensive involvement." Website and registration | Thread Trial by Error by David Tuller Interview with Co-Organizator of Next Week's Unite To Fight Long Covid and ME/CFS Conference Tuller speaks with Marco Wetzel, one of the five German Long Covid patients who organised the conference. Interview l Thread USA NIH Webinar Registration now open for the NIH ME/CFS Webinar on May 28 from 1:00 – 2:00 pm ET. The webinar will include updates from NIH on ME/CFS-related research activities; a scientific presentation by Avindra Nath, M.D., NINDS Clinical Director and Senior Investigator; and a Q&A with panelists. Registration in advance, recording will be available later. Registration | Thread ............... Research ME/CFS research Preprint: BioRxiv Oxidative Stress is a shared characteristic of ME/CFS and Long COVID - Shankar et al "By studying bioenergetic characteristics of peripheral blood lymphocytes in over 16 healthy controls, 15 ME/CFS, and 15 LC, we find both ME/CFS and LC donors exhibit signs of elevated oxidative stress, relative to healthy controls, especially in the memory subset... Critically, these changes in redox pathways show striking sex-specific trends." Article | Thread Journal of Psychosomatic Research Factors associated with having previously received a diagnosis of fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome: A cross sectional DanFunD study - Tattan et al. In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity. Article | Thread Long Covid research The Pediatric Infectious Disease Journal Cardiopulmonary Exercise Testing in Children With Long COVID: A Case-controlled Study — Fabiana Baldi et al. "Children with LC have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension." Article | Thread PAIN Small fibre neuropathy frequently underlies the painful long-COVID syndrome — Falco et al. "Clinical data, quantitative sensory testing, and skin biopsies were collected from 26 selected patients with painful long-COVID syndrome. We also examined 100 individuals with past COVID-19 infection, selecting 33 patients with painless long-COVID syndrome, characterized mainly by symptoms such as brain fog and fatigue, and 30 asymptomatic post–COVID-19 controls." Article | Thread Clinical Infectious Diseases Assessment of the Impact of RNase in Patients With Severe Fatigue Related to Post-Acute Sequelae of SARS-CoV-2 Infection (PASC): A Randomized Phase 2 Trial of RSLV-132 — Andrews et al. "We hypothesized that removal of SARS-CoV-2 viral RNA from latent reservoirs may improve inflammation, neuroinflammation, and fatigue" "A statistically significant difference on day 71 was not observed with respect to the primary or secondary endpoints." Article | Thread BMJ Work and vocational rehabilitation for people living with long covid — Rory J O’Connor et al. "For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed." Article | Thread The Lancet The long COVID evidence gap in England — Anika Knuppel et al. "Of 6405 participants with data on duration of COVID-19 symptoms and linkage to health records, 896 (14%) self-reported [LC] of any severity in longitudinal population based study surveys. Among these 896 participants, just 48 (5.4%; 95% CI 4.1–7.0) were identified as having [LC] related codes in EHRs" Article | Thread Brain, Behavior, and Immunity Prevalence and co-occurrence of cognitive impairment in children and young people up to 12-months post infection with SARS-CoV-2 (Omicron variant) — Foret-Bruno et al. "CYP have a fluctuating experience of cognitive impairment by 12-months post SARSCoV-2-infection. Cognitive impairment is consistently correlated with poorer sleep, behavioural and emotional functioning over a 12-month period." Article | Thread ............ S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
