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:
    142
    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:
    142
    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    Javid said he had heard “disturbing reports” that the final report would not be published until the end of the year, and “there is absolutely no time to waste”.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:
    142
    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:
    142
    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:
    142
    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 Fibro 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
     
    Last edited: May 26, 2024
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  6. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    142
    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 available in German and English.
    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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  7. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    142
    Week beginning 20th May 2024

    Part 1 of 2

    News, advocacy and articles

    USA Senate hearing on the 2025 Budget Request for the National Institutes of Health took place on Thursday 23rd May. It included the need for more funding for research on Long Covid and ME/CFS.
    Thread
    The Hill Long COVID advocates hammer Biden over ‘minimal funding’ in budget request
    "The Long COVID Campaign, in partnership with Long COVID Moonshot and Patient Led Research Collaborative, has called on Congressional leaders to appropriate at least $1.2 Billion in FY25 funding for Long COVID research.."
    Article | Thread

    Europe
    The European ME Coalition (EMEC) call upon candidates in the European elections to commit to supporting individuals suffering ME/CFS by endorsing the ME/CFS pledge. You can help by contacting the candidates for the European elections in your country and ask them to support the ME/CFS pledge. EMEC has drafted a template letter that you can customize.
    Article | Thread

    UK - NHS England Launches New E-learning Module on ME/CFS - ME Association article by Russell Fleming
    The first of three modules was presented at the BACME conference. Fleming's article includes a summary of the content of the module which covers definition, causes, symptoms, management and links to ME organisations. The module can be accessed by clinicians. Forum discussion raises serious concerns about some of the content.
    Article | Thread

    MEAction #TeachMETreatME: Celebrating An Impactful Campaign
    "Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."
    "In the UK, #MEAction UK advocates pulled off a wonderful Postcard to Doctors Campaign encouraging medication professionals to take a CDP module on ME."
    Article | Thread

    The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered that they have little to no health care. One of the authors of the survey and deputy for the Norwegian ME Association Trude Schei calls for more knowledge among GPs and to not push ME patients into treatments with no documented effect. Despite the results from the survey, paediatrician and ME researcher Maria Pedersen claims CBT has good effect as treatment for ME. The article also tells of 22 year old Anja Vesterhus who has lived with ME for 12 years and wants to help others by sharing on Instagram.
    Article l Thread

    UK Schools Week Long Covid teachers join forces to sue ministers
    "Long Covid Educators for Justice (LCEJ) wants compensation from the Department for Education for those who “lost their health, income and employment” after working on the frontline during the pandemic."
    Article | Thread

    Aotearoa New Zealand Tapanui 'Flu
    A forum member has started a website documenting and discussing NZ's historical ME/CFS epidemic outbreak commencing in 1984. Initially noted in the South Otago town of Tapanui but affecting many thousands nationwide. Includes reconstructed media articles from the time.
    Site | Thread

    BBC Long Covid course is 'exploiting people', says ex-GB rower
    Former Team GB rower Oonagh Cousins was offered a free course of the contested
    alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions. Professor and LC-researcher Danny Altmann says such behavioural approaches disregards the "mass" of measurable underlying damage in patients. Neuroscientist Dr Camilla Nord says the course is straying very far from neuroscience and calls it an abuse of scientific terms. The story is presented both as an article and a 38 min radio programme titled "Long Covid: Mind Over Matter?".
    Article l BBC File on 4 l Thread

    Edzard Ernst Almost anyone can recover from long Covid: just pay a lot of money for the ‘Lightning Process’ – no, please don’t; I was joking!
    Responding to the BBC program, Dr Ernst highlights data showing many are harmed by LP and the lack of evidence for claims made. He concludes: "Does anyone think that LP or its promoters are remotely serious?"
    Article | Thread

    Trial by Error by David Tuller BBC Takes on Lightning Process and Highlights Perspectives of the So-Called "Anti-Recovery Activists"
    A short write-up about BBC's critical radio documentary/article about the unfounded claims that Long Covid can be treated by LP. Tuller calls it a well-done project and gives kudos to the journalist Shraer and the producer.
    Article l Thread

    Long Covid Advocacy blog Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS in Long Covid and ME.
    UK Advertising Standards have upheld complaints against Gupta and LP founder Parker for making unfounded claims, yet they continue to dupe media and clinicians into supporting their programs. This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics. "We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."
    Article | Thread
    ...............

    Research news

    USA Scripps Translational Science Institute, California
    The Long COVID-19 Wearable Device Study is now recruiting participants in the USA.
    Up to 100,000 participants who own wearables, and 500 who will be provided with wearables. "The investigators hypothesize that access to personalized information from a wearable device will enable participants to reduce post-exertional malaise. The investigators will include up to 25% individuals whose post-exertional malaise is caused by a condition other than Long COVID-19."
    Protocol | Video (58 minutes) | Thread

    UK Researcher Toolkit
    "Following the establishment of a UK Clinical Research Collaborative Research Working Group on ME/CFS, government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop this Researcher Toolkit. It provides an important overview of: UK government research funding opportunities; guides to embedding patient and public involvement;resources on developing high quality proposals and more.."
    Article with toolkit | Thread

    Undark Bad Blood? The Uncertainty Around Microclots and Long Covid
    "Scientists are debating whether microscopic blood clots are responsible for the wide range of symptoms in long Covid." A detailed article giving varying perspectives of scientists on the validity of the hypotheses, and the need for clinical trials of treatments currently being sold to patients.
    Article | Thread

    Polybio Spring Symposium on Long Covid and ME/CFS research funded by Polybio. Video now available. 30 speakers, 10+ minutes each, total duration 6 hours.
    YouTube | Thread

    Podcast The Building Blocks of Post-Acute Infection Syndromes - Special Series from The Cohen Center for recovery from Complex Chronic Illnesses at Mount Sinai
    Dr. Raven Baxter hosts a ten-part examination of post-acute infection syndromes. In this first episode she is joined by microbiologist Dr. Amy Proal, Dr. Akiko Iwasaki and Dr. Edwards Breitschwerdt. There's a transcript as well as the audio version.
    Podcast l Thread

    The Sick Times Want to enroll in a Long Covid clinical trial? This new project helps track them.
    Betsy Ladyzhets collates information on numbers and types of Long Covid studies, and describes a website that lists observational and interventional Long Covid studies around the world to help people find ones they might participate in.
    Article | Website | Thread

    Netherlands
    The Dutch Brain Bank has started a brain donor program for ME/CFS as part of the ZonMw research agenda and Dutch ME/CFS Cohort and Biobank consortium (NMCB).
    Article | Thread
    ...............

    Crowdfunding

    Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
    The final days of the 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 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 and a Q&A with panelists. Registration in advance, recording will be available later.
    Registration | Thread
    .................

    Go to the next post for Part 2 Research
     
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  8. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    142
    Week beginning 20th May 2024

    Part 2 of 2

    Research

    ME/CFS research

    Clinical Autonomic Research
    Is it time to move beyond blood pressure and heart rate during head-up tilt testing? - Miglis et al.
    The authors emphasise that orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing.
    Article | Thread

    Preprint
    Predictors of Postviral Symptoms Following Epstein-Barr Virus-Associated Infectious Mononucleosis in Young People – Data from the IMMUC Study - Bodenhausen et al.
    "A clinical history of immune dysregulation as well as distinct severe IM symptoms might predict protracted post-viral disease and thus help in the identification of young patients at risk."
    Article | Thread

    Preprint
    Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life
    Preprint by Chuluunbaatar-Lussier, Nacul et al based on a questionnaire with 187 participants. They conclude "the majority of self-reported cases do not meet diagnostic criteria for ME/CFS" and "suggest studies of ME/CFS should include appropriate medically confirmed clinical diagnosis for validity".
    Preprint l Thread

    Long Covid research

    Nature Communications
    Cerebral microstructural alterations in Post-COVID-condition are related to cognitive impairment, olfactory dysfunction and fatigue — Hosp et al.
    "we applied the advanced imaging technique [Diffusion Microstructure Imaging] to uncover microstructural changes after COVID-19 infection, with the observation of different patterns in a cohort of patients with and without PCC."
    Article | Thread

    Frontiers in Neurology
    Blood brain barrier disruption and glutamatergic excitotoxicity in post-acute sequelae of SARS COV-2 infection cognitive impairment: potential biomarkers and a window into pathogenesis — Chaganti et al.
    "We have undertaken a comprehensive proof-of-concept prospective case–control study to investigate parallel changes in blood brain barrier permeability, neurochemicals, and white matter microstructure changes in PASC CI patients."
    Article | Thread

    Journal of Patient Experience
    The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of COVID-19 — Jolaade Kalinowski et al.
    "There are several arguments for how saying “We don’t know” might benefit patients. The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses. This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."
    Article | Thread

    Frontiers in Immunology
    A murine model of post-acute neurological sequelae following SARS-CoV-2 variant infection — Singh et al.
    "our results suggest that infection in K18-hACE2 mice recapitulates the persistent clinical symptoms reported in long-COVID patients."
    Article | Thread

    The Journal of Infectious Diseases
    The importance of including Long COVID outcomes when developing novel treatments for acute COVID-19 — Connor and Taylor
    "In our review, we argue there are 7 compelling reasons to include Long Covid measurements"
    Article | Thread

    Health Expectations
    Using co-design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention — Fiona Jones et al.
    "The lived experiences of people with LC, in relation to their condition and their experiences of healthcare services have provided a primary source of evidence."
    Article | Thread

    The American Journal of Medicine
    Lessons learned in implementing a multidisciplinary long COVID clinic — Ana Palacio et al.
    "We have also learned that providing opportunities for multidisciplinary providers to learn new information, brainstorm approaches and support each other, are key for the success of long COVID clinics."
    Article | Thread

    Nature Scientific Reports
    Long-COVID autonomic syndrome in working age and work ability impairment — Rinaldi et al.
    "While our results are not generalizable to the entire working age population, they provide new insights on the relationship between chronic autonomic dysfunction after COVID19 and work ability and may help health professionals in the field of occupational health to mitigate the risk of unemployment after COVID."
    Article | Thread

    Preprint: MedRxiv
    The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea — Theresa Burkard et al.
    "We included 34,549,575 individuals of whom 2,521,812 had COVID-19, and 4,233,145 a first negative test. After COVID-19 compared to test negative patients, we observed IRRs of 1.24 (1.23-1.25), 1.22 (1.21-1.23), and 1.12 (1.04-1.21) for POTS symptoms, ME/CFS symptoms and diagnoses, respectively."
    Article | Thread
    ....................

    S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
     
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  9. S4ME News

    S4ME News S4ME News Summaries Staff Member

    Messages:
    142
    Week beginning 27th May 2024

    News, advocacy and articles

    Australia Emerge presents report to Minister of Health
    "Urgent recommendations to improve care for people with ME/CFS and long COVID"
    Report | Press Release | Thread

    Sweden The Patient Complaints Board in Stockholm issued a statement last month concerning political decisions which resulted into ME patients being temporarily left without specialist care. They find the situation worrying and an urgent matter to solve. Sveriges Radio made a short radio segment about ME patients not being able to get hold of necessary medicine because of this situation.
    Statement l Sveriges Radio l Thread

    UK Action for ME Supporting people with ME/CFS in hospital
    This document provides resources for people with ME/CFS who are going into hospital.
    Document | Thread

    Austria
    Vienna's city center is currently plastered with #MECFS awareness campaign billboards by the WE&ME Foundation. They are located in some of the most frequently passed pedestrian areas and read: "ME/CFS holds you prisoner".
    Article | Thread
    ................

    Research news

    DecodeME Applications for access to DecodeME data invited.
    "Our ME/CFS data set includes both phenotype and genotype data from thousands of participants, who have consented to us sharing their data on a de-identified basis. In addition, where appropriate and where consent has been given, we can also re-contact participants."
    This opportunity closes end of Aug 2025.
    Article | Thread

    Long Covid Support Research Involvement Consultancy
    "We make it easy to involve people with Long Covid in your research and help ensure your study is relevant, robust and keeps the patient voice at the centre."
    "Our research advisers are all people with Long Covid who are trained in Patient Involvement in Research and have practical experience of being involved in various studies. Book a slot in one of our regular scheduled online advice sessions."
    Article | Thread

    ME Research UK Report of the ME/CFS Research Roadmap Working Group of Council – May 2024
    This article discusses the ME/CFS Research Roadmap Working Group's report published on May 15. This report "lays out the need for transformative change in ME/CFS research" and lists "27 specific gaps in ME/CFS knowledge/research followed by strategies to defeat these".
    Article | Thread
    ................

    Coming events

    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." Two workshops this week, and two more in July.
    Clinical Trial Design in People with ME/CFS, 4th June 2024
    Details | Thread | MEA article
    Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June
    Details | Thread

    Bateman Horne Center - Free Online Support Groups
    Friday, June 7, 1:00 - 2:00 PM Mountain Time
    Topic: What does it mean to be “chronically ill?”
    Friday, June 21, 1:00 - 2:00 PM Mountain Time
    Topic: How labels construct narratives
    Advance registration required, see thread for times in your time zone.
    Event Calendar | Thread

    Invest in ME Research
    International ME Conference, 28 June 2024
    Wellcome Genome Campus, UK
    Advancing Understanding of ME: Bridging Research and Clinical Treatment
    Conference speakers include Avindra Nath, Rob Wüst, Simon Carding, Maureen Hanson, David Systrom, Ron Davis.
    Research colloquium June 26-27: The infectious aetiology of ME.
    Conference | Colloquium | Thread
    .................

    Research

    ME/CFS research

    UC Davis
    Thesis abstract: Develop Microfluidic-based Diagnostic Approaches for ME/CFS, 2024, Guo
    The researchers developed 'a microfluidic platform to measure capillary velocity of red blood cells (RBCs) at controlled oxygen tensions (PO2)'. They were able to distinguish ME/CFS from controls and suggested possible drug treatments. The thesis is not accessible for 2 years. Guo gave a talk in February, available on video.
    Thesis | Thread | Video | Thread

    Preprints.org
    Development of Epidemiological Research Guidelines for ME/CFS in Canada - Chuluunbaatar-Lussier et al.
    This preprint publication describes research recommendations made by the Interdisciplinary Canadian Collaborative ME Research Network (ICanCME). For the diagnosis of ME/CFS it recommends using the IOM, CCC or NICE-criteria.
    Article | Thread

    Journal of the Royal College of Physicians of Edinburgh
    Medical students highlight the importance of medical education, kindness, compassion and belief when learning about patients with myalgic encephalomyelitis/chronic fatigue syndrome - Nina Muirhead.
    In this editorial Muirhead gives a brief introduction to ME/CFS. Earlier this year, Scottish medical students were invited to take part in an essay competition, 500 words on the topic of ‘What is your most important learning point about ME/CFS?’ The prize was funded by the Scottish Government’s education project; 'Learn About ME'.
    Article | Thread

    Journal of the Royal College of Physicians of Edinburgh
    Learning points about myalgic encephalitis/ chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness -Bhanu Wahi-Singh
    In this essay, the author talks about how his aunt suffers from ME/CFS and what he learned about the condition: "My most important learning point about ME/CFS, however, is how it really exemplifies that the best doctors are the ones that listen and form a relationship with patients."
    Article | Thread

    Medrxiv
    Complex Chronic Diseases Program: Program Description & Health Outcomes Assessment from a Clinical Data Registry - Meagher et al.
    This article describes results from the Complex Chronic Diseases Program (CCDP) in Canada. Eighty procent of the 568 patient sample analyzed had a diagnosis of ME/CFS. They reported no improvement in pain, sleep or fatigue.
    Article | Thread

    Long Covid research

    Journal of Autoimmunity
    Diverse immunological dysregulation, chronic inflammation, and impaired erythropoiesis in long COVID patients with chronic fatigue syndrome — Saito et al.
    "An unexpected and novel finding was the grouping of ARTN [artemin] with TIGIT, TIM-3, CD160, PD-1, and 2B4 co-expressing CD8+ T cells in LC." "the association between plasma ARTN levels and cognitive impairments score in LC patients suggests a potential role for ARTN in LC pathogenesis"
    Article | Thread

    Preprint: BioRxiv
    Transfer of IgG from Long COVID patients induces symptomology in mice — Hung-Jen Chen et al.
    "Remarkably, IgG transfer from the two subgroups, which are characterized by higher plasma levels of neuronal proteins and leukocyte activation markers, induced pronounced and persistent sensory hypersensitivity with distinct kinetics. Conversely, IgG transfer from the third subgroup, which are characterized by enriched skeletal and cardiac muscle proteome profiles, reduced locomotor activity in mice without affecting their motor coordination."
    Article | Thread

    BMC Pulmonary Medicine
    Persisting exercise ventilatory inefficiency in subjects recovering from COVID-19. Longitudinal data analysis 34 months post-discharge — Dorelli et al.
    "Our study reports a close association between exercise hyperventilation and [Exercise ventilatory inefficiency] as a permanent and distinctive sign of a proportion of asymptomatic survivors after 34 months. Even if this phenomenon has been documented, the pathophysiological mechanism is still unclear."
    Article | Thread

    Infection
    The roles of the kynurenine pathway in COVID-19 neuropathogenesis — Dehhaghi et al.
    Review article. "The sustained activation of the KP [kynurenine pathway], associated with cognitive impairments and chronic fatigue, underscores the potential of KP as a therapeutic target and as a possible biomarker for long COVID in future studies."
    Article | Thread

    Journal of Neural Transmission
    Psychological outcomes of COVID-19 survivors at sixth months after diagnose: the role of kynurenine pathway metabolites in depression, anxiety, and stress — Kucukkarapinar et al.
    "we determined that the metabolites of the kynurenine pathway, specifically KYN, TRP, 3-HK, and the KYN/TRP ratio, have a strong relationship with the symptoms of depression and anxiety that emerge in post-COVID-19 individuals."
    Article | Thread

    Lancet: eClinicalMedicine
    Association between acquiring SARS-CoV-2 during pregnancy and post-acute sequelae of SARS-CoV-2 infection: RECOVER electronic health record cohort analysis — Ann M. Bruno et al.
    "SARS-CoV-2 infection acquired during pregnancy was associated with lower risk of development of PASC at 30–180 days after incident SARS-CoV-2 infection in this nationally representative sample."
    Article | Thread

    Nature Medicine
    Three-year outcomes of post-acute sequelae of COVID-19 — Cai et al.
    "Risks for post-acute sequelae declined over the years, but substantial residual risk remained in the third year, leading to 252.8 sequelae per 1,000 persons and 90.0 DALYs per 1,000 persons."
    Article | Thread

    Journal of Integrative Neuroscience
    Longitudinal Exploration of Cortical Brain Activity in Cognitive Fog: An EEG Study in Patients with and without Anosmia — Antonio Gangemi et al.
    "The results revealed significant differences in the neurophysiological parameters of P300 and beta band rhythms in subjects affected by cognitive fog, and these alterations persist even 8 months after recovery from Covid-19"
    Article | Thread

    Journal of Primary Care & Community Health
    Longitudinal Progression of Patients with Long COVID Treated in a Post-COVID Clinic: A Cross-Sectional Survey — Ryan T. Hurt et al.
    "Self-reported symptoms were all significantly improved (P < .001) from the initial visit to the LCC (baseline) to the time of the follow-up survey. However, only 4.5% (24/536) of patients rated all symptoms low (1-2) at the time of the survey, indicating low levels of full recovery in our cohort."
    Article | Thread

    Journal of Pediatric Nursing
    Navigating an unfamiliar world – Parents' experiences of having a child with post COVID-19 — Angelhoff et al.
    "The parents try to navigate in an unfamiliar world, searching for someone to believe in them and their child, and describe the relief when their child's condition is confirmed. The findings also demonstrate the depth of suffering, not only for the child but also for the whole family."
    Article | Thread

    British Journal of General Practice
    People from ethnic minorities seeking help for Long Covid: a qualitative study. — Nina Smyth et al.
    "Experiences of stigma and discrimination resulted in negative healthcare experiences and mistrust in healthcare, creating barriers to help-seeking. Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in healthcare."
    Article | Thread
    ....................

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    S4ME News S4ME News Summaries Staff Member

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