News in Brief - May 2024

Discussion in 'Weekly ME news in brief' started by S4ME News, May 5, 2024.

  1. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    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.
     
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  2. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    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    Javid said he had heard “disturbing reports” that the final report would not be published until the end of the year, and “there is absolutely no time to waste”.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
     
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  3. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    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
     
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  4. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    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
    ............

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  5. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    Week beginning 13th May 2024

    Part 1 of 2

    News, advocacy and articles

    UK BACME - British Association of Clinicians in ME/CFS
    An open letter to Anna Gregorowski, chair of BACME, from Members of the ME community, facilitated by the Chronic Collaboration. It highlights failures of BACME to fully update their materials to comply with NICE guidelines, and failure of clinics run by members of BACME to move away from harmful past practices. "Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines." The letter is available for added signatures and comments.
    Letter | Thread
    A video presentation by Katie Johnstone to the ME Local Network about outdated and harmful information in BACME materials. Duration 17 minutes.
    Video | Thread
    BACME held it's online conference on 16th May. A request for people with ME/CFS to be allowed to attend was rejected.
    Thread | Thread
    Professor Chris Ponting has made available his excellent talk at the conference about DecodeME, including findings from the questionnaire part of the study showing thousands of pwME report that pacing is helpful, CBT is not helpful and GET causes harm. He also highlighted the valuable contribution of partnership with patients. Duration 13 minutes.
    Video | Thread

    USA Senate From a Long Covid advocate on Twitter: Appropriations public hearing with NIH Director & Institute heads testimony & Senator questions likely next THURSDAY, MAY 23
    Tweet | Thread

    Unite to Fight the very well run and successful online conference was held on 15th and 16th May. Speakers included researchers, clinicians and people with ME/CFS or Long Covid. The talks will be made available on YouTube.
    Website | Thread

    Inews 'It's destroyed us': Parents of children with long Covid accused of making it up
    Article on parents of children with long Covid being accused of exaggeration or faking the illness. It's compared with how professionals also have been dismissing ME.
    Article (paywalled) l Thread

    UK ME Association How many people have ME/CFS in the UK? by Dr Charles Shepherd.
    Varying prevalence figures from different sources suggest new research is needed to update the commonly quoted figure of 250,000 in the UK. The addition of new cases from Long COVID add to the need for new data.
    "While any decision to increase the estimated number of people affected by ME/CFS might have positive implications for future research funding, health and social care provision and for public recognition of ME/CFS, we need to be sure that any new figure can be justified."
    Article | Thread

    Post-Exertional Mayonnaise ME and the cult-like nature of psychologisation
    Podcast interview with Eliza Charley. Highly informed and very well articulated discussion of the experiences of medical, societal and self-gaslighting in the context of medically-induced stigma.
    YouTube | Thread

    BBC Chronic fatigue syndrome: Protestors call for specialist ME services
    Article about a demonstration for specialist ME services in Northern Ireland. Interviews with Joan McParland, founder of Hope 4 ME and Fibo NI, Rosie Pigeon and Rebecca Logan
    Article l Thread

    Yale Medicine Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses
    A good article on ME/CFS and its similarities with Long COVID. ME/CFS expert and researcher at MIT Beth Pollack says she's "hopeful that we are entering a new era of chronic illness research".
    Article l Thread

    Health Rising Has ME/CFS's Time Finally Come at the NIH? The Vicky Whittemore Interview
    A one hour conversation between Cort Johnson and Vicky Whittemore from NIH who is "involved in virtually everything of consequence happening with ME/CFS at the NIH". Johnson has also done a write-up of the interview in which he summarises: While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has.
    Article l Thread

    UK Leicester Mercury Boards bid to highlight 'abandoned' patients
    Article about UK ME campaigning through billboard advertisement calling for more research funding for ME and Long Covid.
    Thread with picture of article

    MIRAME ARTS The German ME organisation Mirame Arts produced a short awareness film about ME/CFS and prejudice for the international ME awareness day May 12th.
    Tweet with film l Thread

    Trial by Error by David Tuller Anil van der Zee's New Video on Living with Severe ME
    An interview with patient advocate Anil van der Zee about his video titled "The Prison of M.E." made for the ME Awareness Day.
    Article with video l Thread

    Book It's Not the Strongest That Survives: A search for answers in the battle against glandular fever and ME/CFS by Lily Whelan
    An autobiography describing life with ME/CFS following glandular fever.
    "Unable to achieve her goals, she set out to find medical answers. Along the way, she began to question her beliefs and learned that when you can’t define yourself by what you do, you find out who you really are."
    Thread

    Sweden Journalist Agnes Ari has written an opinion piece about the lack of care for ME patients in Sweden. "Certain groups of patients are more susceptible to negligence, poor care and unethical treatment than others, and ME patients are such a group".
    Opinion piece l Thread

    Germany
    A 'Liegenddemo', a demonstration where people lay flat on the ground, was organized on 11 May in Berlin to raise awareness of ME/CFS. Prof. Scheibenbogen and the German Minister of Health gave a short speech.
    Thread

    Hungary
    A ME/CFS Awareness Day event was organized in Hungary. Several ME/CFS videos were shown and discussed. S4ME forum member Wyva participated in the discussions. The event was video-recorded and can be watched on Facebook.
    Video | Thread

    Switzerland
    Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.
    Article | Thread
    ..............

    Research news

    USA NIH NANDSC ME/CFS Research Roadmap Working Group
    The roadmap was presented at the NANDS Council meeting on May 15, 2024. A recording of the Council meeting is on NIH videocast.
    Article | Thread

    Polybio Symposium held online on 17th May
    30 scientists working on PolyBio-supported projects gave 10 min lightning talks with updates on their work and answered questions.
    Website | Thread

    USA NIH to open long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise
    Part of the NIH RECOVER Initiative, trials will test four treatments.
    The trials include drugs to help with insomnia and hypersomnia, exercise for those without PEM, and structured pacing for those with PEM.
    Article | Thread

    Precision Medicine Online
    Metrodora Institute, PrecisionLife to Launch Biomarker-Driven Long COVID, CFS Trials
    "The organizations will open recruitment for the clinical trials in the US in June with plans to recruit up to 1,000 patients. Results from the studies may read out as early as later this year. The partnership brings together PrecisionLife's data platform that analyzes disease mechanisms, drug targets, and patient stratification biomarkers with expertise at Salt Lake City-based Metrodora Institute, a medical and research center focused on complex multisystem disorders."
    Article | Thread

    Open Medicine Foundation Itaconate Trap Study - Armstrong and Phair
    "Objectives: Explore the itaconate trap and other potential traps in central carbon metabolism. Build pathways of central carbon metabolism. Develop kinetic models to try predict potential “weakness” points. Test the hypothesis experimentally."
    Article | Thread

    UK Quadram Institute New study to shine a light on ME
    Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research.
    Article | Thread

    British Columbia Low-dose naltrexone for post-COVID fatigue syndrome
    Protocol published in BMJ Open. RCT over 16 weeks.
    Article | 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

    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

    UK Clinical Research Collaboration workshops
    "...a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration."
    1. Clinical Trial Design in People with ME/CFS, 4th June 2024
    Details | Thread | MEA article
    2. Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June
    Details | Thread
    3. Drug Repurposing Clinical Trials in People with ME/CFS, 26th June
    Details | Thread
    4. ME/CFS Research and Underserved Groups, 16th July
    Details | Thread

    UK RCPE online event ME/CFS and Long COVID
    Tuesday 4th June 2024, 6.00pm – 8.30pm (BST)
    Royal College of Physicians Edinburgh event for clinicians and students.
    Speakers include Nicola Clague-Baker, Jaime Seltzer, David Putrino and Danny Altmann.
    Details | Thread
    ................

    Go to the next post for part 2 - research
     
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  6. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    135
    Week beginning 13th May 2024

    Part 2 of 2

    Research

    ME/CFS research

    Wiener klinische Wochenschrift
    Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom
    A new German Interdisciplinary, collaborative consensus statement concerning the diagnostic and treatment of ME/CFS was published by researchers from Germany, Austria and Switzerland.
    Article | Thread

    Dtsch Z Sportmed
    Between progress and invisibility: Are post-viral fatigue syndromes overwhelming medicine and society? - Steinacker & Klinkisch.
    Editorial of the 2/2024 issue of the German Journal of Sports Medicine. It discusses the medical-scientific and societal challenges of post-COVID and a variety of other post-viral fatigue syndromes. The article is written in German.
    Article | Thread

    Fatigue: Biomedicine, Health & Behavior
    United States Veterans with comorbid chronic fatigue syndrome and chronic pain: do women differ from men? - Adamowicz et al.
    The authors used administrative data from the VA Corporate Data Warehouse and found that comorbid CFS and chronic pain was greater among women than male Veterans.
    Article | Thread

    Das Gesundheitswesen
    Multimodal treatment strategies for homebound people with severe ME/CFS: a scoping review - Mayer-Huber et al.
    A review article in German by the research team of Uta Behrends that aims to provide an overview of previously published treatment strategies that are multimodal and not purely drug in nature and are suitable for home or bedbound ME/CFS patients.
    Article | Thread

    CHI '24: Proceedings of the CHI Conference on Human Factors in Computing Systems
    Good Days, Bad Days: Understanding the Trajectories of Technology Use During Chronic Fatigue Syndrome - Paymal & Homewood
    The authors conducted a scoping study with people with ME/CFS to understand how their illness shapes how they use technologies in their everyday lives.
    Article | Thread

    Long Covid research

    Cell Reports Medicine
    Clinical and CSF single-cell profiling of post-COVID-19 cognitive impairment — William T. Hu et al.
    "Here, we report PASC-CI to have cognitive deficits independent from depression and anxiety symptoms, to be molecularly distinct from AD, and to associate with dysregulated IFN- and chemokine-related genes a median of 9 months following their initial COVID-19 infection."
    Article | Thread

    Behavioural Brain Research
    Persistent fatigue in post-acute COVID syndrome is associated with altered T1 MRI texture in subcortical structures: a preliminary investigation — Churchill et al.
    "significant differences were observed between those with and without fatigue symptoms" "included reduced texture energy and increased entropy, along with reduced texture correlation, cluster shade and profile in the putamen, pallidum, thalamus and brainstem." "findings provide new insights into the neurophysiological mechanisms that underlie PACS, with altered tissue texture as a potential biomarker of this debilitating condition."
    Article | Thread

    International Journal of Molecular Sciences
    Targeting the High-Density Lipoprotein Proteome for the Treatment of Post-Acute Sequelae of SARS-CoV-2 — Grote et al.
    "our study provides evidence for similar pathomechanisms acting in PVS/PCS patients which involve impairment of the RAS and the cholesterol metabolism."
    Article | Thread

    BMC Cardiovascular Disorders
    Evaluation of blood pressure variation in recovered COVID-19 patients at one-year follow-up: a retrospective cohort study — Azami et al.
    "COVID-19 raised systolic and diastolic BP in the long term in non-hospitalized patients, with over onesixth developing new-onset or exacerbated hypertension."
    Article | Thread

    Preprint: MedRxiv
    Post-Acute Cardiovascular Outcomes of COVID-19 in Children and Adolescents: An EHR Cohort Study from the RECOVER Project — Bingyu Zhang et al.
    "In summary, this study shows a heightened risk of cardiovascular disease in children following SARS-CoV-2 infection, with similar risks observed in those with and without pre-existing congenital heart disease."
    Article | Thread

    Preprint: BioRxiv
    Persistent Activation of Chronic Inflammatory Pathways in Long Covid — Malika Aid et al.
    "Long Covid was characterized by persistent inflammatory pathways compared with convalescent controls and uninfected controls, including upregulation of IL-6 and JAK-STAT pathways as well as activation of coagulation, complement, metabolism, and T cell exhaustion pathways."
    Article | Thread
    ............

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