News in Brief - March 2024

This thread has a Science for ME 'News in Brief' post for each week in March 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

 

Week beginning 26th February 2024

News, advocacy and media

Ireland
ME/CFS patient advocate Tom Kindlon was nominated for an honorary degree at Trinity College Dublin. Although his nomination was supported by a long list of researchers, healthcare professionals and advocates it was ultimately unsuccessful. Forum member Robert 1973 initiated and coordinated the nomination.
Thread

Institute for Neuro-Immune Medicine Validating Patients With ME/CFS
In this video Executive Director Nathalie Sloane speaks with Dr. Alison Bested about the importance of validating patients' experiences (about 30 minutes long).
Video | Thread

UK APPG The minutes of the last two meetings of the All Party Parliamentary Group are available.
November 2023 | February 2024 + AGM | Thread
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Research news and commentary

Trial by Error by David Tuller An Interview with Neuroscientist Michael VanElzakker about the Just-Published and Long-Awaited NIH Study
David Tuller and Michael VanElzakker discuss the recent NIH study. VanElzakker thinks that the finding of viral antigen persistence is intriguing.
Interview l Thread

#MEAction has published a response to the recently published NIH study. Quote: "While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study."
Article | Thread

Jarred Younger The National Institutes of Health ME/CFS Roadmap
In this short video (11 minutes) Dr. Younger talks about the National Institutes of Health ME/CFS Research Roadmap. He encourages everyone to look at the draft research priorities and submit ideas and comments (deadline March 8). The process for how to submit comments is described in the video.
Video | Thread
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Coming events

Bateman Horne Center - Free Online Support Groups
Tuesday, March 12, 1:00 - 2:00 PM Mountain Time
Topic: Caring About Our Caregivers
Tuesday, March 19, 1:00 - 2:00 PM Mountain Time
Topic: Share your animal day
See thread for times in your time zone.
Event Calendar | Thread
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Research

ME/CFS research

Journal of Neurology, Neurosurgery & Psychiatry
NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence - Barry et al.
This article refutes criticism of the NICE guideline on ME/CFS and argues that "the evidence review was quality assured externally, and the rating of the evidence as ‘low to very low quality’ is consistent with other reviews, including the Cochrane review on exercise therapy for ME/CFS."
Article | Thread

European Journal of Pediatrics
Graded exercise therapy compared to activity management for paediatric CFS/ME: pragmatic randomized controlled trial [MAGENTA trial] - Gaunt, Crawley et al.
"Children aged 8-17 years with mild/moderate ME/CFS and presenting to NHS specialist paediatric services were allocated at random to either individualised flexible treatment focussing on physical activity (GET, 123 participants) or on managing cognitive, school and social activity (AM, 118 participants) delivered by NHS therapists."
No between group difference was found on the SF-36 PF, Chalder Fatigue or other outcome questionnaires. "There was weak evidence of a greater risk of deterioration with GET (27%) than with AM (17%; p = 0.069)."
"CONCLUSIONS There was no evidence that GET was more effective or cost-effective than AM in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points."
Article | Thread

Heliyon
Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study - König et al.
This survey of ME/CFS patients in Switzerland found that two thirds of the patients experienced stigmatization. ME/CFS had a negative impact on mental health in most patients, leading to sadness, hopelessness for relief, suicidal thoughts and secondary depression.
Article | Thread

Journal of Personalized Medicine (JPM)
The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Jason et al.
In the present study, 193 patients seeking treatment for ME/CFS underwent a a head-up tilt table test. During the test, 32.5% of participants demonstrated postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH).
Article | Thread

Journal of Clinical Medicine
Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics - Unger et al.
This study found that the ME/CFS patient population is heterogenous but that it does not differ significantly across different clinics. According to the authors "this suggests that expert clinicans are recognizing the same clinical entity, albeit one that is far from homogeneous."
Article | Thread

Long Covid research

Preprint: MedRxiv
Sex differences in symptomatology and immune profiles of Long COVID — Silva, Iwasaki et al.
“Here, we performed sex-based multi-dimensional immune-endocrine profiling […] in an exploratory, cross-sectional study to identify key immunological traits underlying biological sex differences in LC.” “These findings suggest distinct immunological processes of LC in females and males and illuminate the crucial role of immune-endocrine dysregulation in sex-specific pathology.”
Article | Thread

Nature Scientific Reports
Severe COVID-19 and long COVID are associated with high expression of STING, cGAS and IFN-α — Queiroz et al.
“Patients with long COVID had higher cGAS, STING and IFN-α levels than individuals who did not manifest any symptoms in the post-COVID-19 period.”
Article | Thread

Sensors
Ebbing Strength, Fading Power: Unveiling the Impact of Persistent Fatigue on Muscle Performance in COVID-19 Survivors — Kowal et al.
“results suggest that individuals in the PCC experience greater work fatigue and reduced power in the knee extensors and flexors” “The effect sizes for these differences, as measured by Cohen’s d, were significant for most variables.”
Article | Thread

New England Journal of Medicine
Cognition and Memory after Covid-19 in a Large Community Sample — Adam Hampshire et al.
“In a comparison of the group that had unresolved persistent symptoms with the no–Covid-19 group, memory, reasoning, and executive function tasks were associated with the largest deficits (−0.33 to −0.20 SD); these tasks correlated weakly with recent symptoms, including poor memory and brain fog.”
Article | Thread

European Journal of Public Health
Employment outcomes of people with Long Covid symptoms: community-based cohort study — Ayoubkhani et al.
“This was an observational, longitudinal study using a pre–post design […] we explored the time-varying relationship between Long Covid status 12 weeks after a first test-confirmed SARS-CoV-2 infection” “Of 206 299 participants (mean age 45 years, 54% female, 92% white), 15% were ever labour market inactive and 10% were ever long-term absent during follow-up.”
Article | Thread

Progress in Cardiovascular Diseases
Using cardiorespiratory fitness assessment to identify pathophysiology in long COVID – Best practice approaches — Faghy et al.
“Conventional CPET to volitional exhaustion are supported by decades of research demonstrating immense clinical value, however, the confounders of PESE provide a challenge to the design and implementation of research in COVID-19/Long COVID.”
Article | Thread

Journal of Personalized Medicine
Possible Role of Fibrinaloid Microclots in Postural Orthostatic Tachycardia Syndrome (POTS): Focus on Long COVID — Kell et al.
“We here develop the argument, with accompanying evidence, that fibrinaloid microclots, through their ability to block the flow of blood through microcapillaries and thus cause tissue hypoxia, are not simply correlated with but in fact, by preceding it, may be a chief intermediary cause of POTS, in which tachycardia is simply the body’s exaggerated ‘physiological’ response to hypoxia.”
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 4th March 2024

News and advocacy

USA - Solve M.E. has announced details for Advocacy Week, April 15-19, with "actions for every energy level and ability to join, from social media posts to virtual meetings with congressional leaders." Register for congressional meetings by March 15. The first training session is on March 18 (more details in thread).
Announcement | Thread

David M Tuller Adam Lowe Explains the NICE Response to Uninformed "Eight Anomalies" Critique of ME/CFS Guidelines
Adam Lowe was patient representative for the NICE ME/CFS clinical guidelines from 2021. In this interview Lowe and Tuller discuss NICE's recent response to criticism of the guidelines raised by BPS proponents.
Video l Thread
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Research news and commentary

Australia Mason Foundation research grants
Researchers at La Trobe University in Melbourne receive grants worth $720,000 for two studies. The studies will examine how signatures from the gut microbiota, immune system or peripheral blood cells could be used to diagnose or develop treatments for ME or Long COVID. Dr Missailidis also comments from his perspective as PI for one of the studies in the S4ME thread.
Announcement | Thread

UK DecodeME
"Thank you to everyone who completed the DecodeME second questionnaire. We have received over 15,200 responses."
DecodeME completion date has been extended to August 2025, with the extra funding needed agreed by their funders. The delay is caused by operational and capacity issues with extraction of DNA at the UK Biocentre.
Article | Thread
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Coming events

DecodeME webinar
Friday 15th March 02:00pm (GMT) on Zoom and Facebook Live.
Join Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke from the DecodeME team to hear the latest news and what's next for the project.
Questions can be sent in advance by email.
Register | Thread

Massachusetts ME/CFS and FM Association - Sunday Conversations
Topic: "Dysautonomias 101: More Than Just POTS"
Sunday, March 17, 4:00 PM Eastern
Registration required. See thread for times in your time zone.
Announcement | Thread
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Research

ME/CFS research

European Journal of Medical Research
Clinical evidence of the link between gut microbiome and [ME/CFS]: a retrospective review 2024 Wang et al
A review article collated data from 11 studies found "a significant decrease in α-diversity and a noticeable change in β-diversity in the gut microbiome of ME/CFS patients compared to healthy controls." There was a significant reduction in some microbial metabolites.
Article | Thread

Fatigue: Biomedicine, Health & Behavior
The effect of comorbid medical diagnoses on disturbed sleep in chronic fatigue syndrome - Stegner et al.
"Although CFS severity and FM status do not impact insomnia severity, increased illness burden as manifested by multiple medically unexplained diagnoses does appear to influence insomnia."
Article | Thread

BMJ Paediatrics Open
Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study - Royston et al.
"Full investigation is frequently incomplete in children and young people with suspected severe ME/CFS and recommendations for referral and management are poorly implemented."
Article | Thread

Long Covid research

Brain Communications
Sex differences in post-acute neurological sequelae of SARS-CoV-2 and symptom resolution in adults after coronavirus disease 2019 hospitalization: an international multi-centre prospective observational study — Cho et al.
“This international multi-centre prospective cohort study demonstrates that PANSC after hospitalization is high, with a higher prevalence in females and a longer time to resolution.”
Article | Thread

Nature Immunology
Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19 — Hanson et al.
“A multivariate signature detected beyond two weeks of disease, encompassing unresolving inflammation, anemia, low serum iron, altered iron-homeostasis gene expression and emerging stress erythropoiesis; differentiated those who reported PASC months later, irrespective of COVID-19 severity.”
Article | Thread

Respiration
Impaired Sleep in Patients with Post-COVID-19 Syndrome Compared to Healthy Controls: A Cross-Sectional Trial — Jarosch et al.
“In this prospective trial, we found that 8.5 months after COVID-19 diagnosis, patients with PCS but not CON showed impaired sleep in most cases. [Polysomnography] revealed a higher [apnoea/hypopnea index], a higher frequency of [periodic leg movment] events and a lower sleep efficacy in patients with PCS”
Article | Thread

Frontiers in Immunology
Coagulation profile in hospitalized children with COVID-19: pediatric age dependency and its impact on long COVID development — Boyarchuk et al.
“Among children who developed persistent long COVID symptoms there was a statistically higher percentage of abnormal PT values (53% versus 36.1%, p=0.0432), with no significant differences in other coagulation profile indicators.”
Article | Thread

Brain
Vortioxetine for the treatment of post-COVID-19 condition: a randomized controlled trial — McIntyre et al.
“Between-group analysis did not show a significant difference in the overall change in cognitive function [P = 0.361]. However, in the fully adjusted model, a significant treatment × time interaction was observed in favour of vortioxetine treatment with baseline c-reactive protein (CRP) as a moderator (P = 0.012).”
Article | Thread

PLOS ONE
What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence — Moira Cruickshank et al.
“Healthcare workers struggled with their dual identity (patient/doctor) and felt dismissed or not taken seriously by their doctors. Our findings are in line with those in the literature showing that there are barriers to healthcare professionals accessing healthcare”
Article | Thread

Open Forum Infectious Diseases
Burnout, Compassion Fatigue, and the Long Haul of Caring for Long COVID — Ramers et al.
“In the wake of pandemic stress, high workloads, and ongoing frustrations, many health care workers are choosing to retire early or leave their professions” “Our current system of siloed, efficiency oriented medical care is ill-equipped to adequately address such complex chronic conditions.”
Article | Thread

Preprint: MedRxiv
Accelerated brain age in young to early middle-aged adults after mild to moderate COVID-19 infection — Shelli R Kesler et al.
“we calculated Brain Age Gap (BAG), which is the difference between brain age and chronological age, in a cohort of 25 mild to moderate COVID-19 survivors” “BAG was significantly higher in the COVID-19 group (F = 4.22, p = 0.046) by 2.65 years.”
Article | Thread

Preprint: MedRxiv
Prevalence of orthostatic intolerance in Long Covid clinic patients: A multicentre observational study — Cassie Lee et al.
“More than half of long covid patients experienced OI symptoms during [Nasa Lean Test] and more than one in 10 patients met the criteria for either PoTS or OH, half of whom did not report previous typical OI symptoms.”
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 11th March 2024

Part 1 of 2

News and advocacy

The Guardian 'You don't want to get better': the outdated treatment of ME/CFS patients is a national scandal
Author and journalist George Monbiot with a brilliant, detailed, well researched piece about the appalling history of how flawed science caused enormous harm to ME patients. "It's the greatest medical scandal of the 21st century"
Article l Thread
Trial by Error by David Tuller
Guardian Columnist George Monbiot Calls Out the GET/CBT Charlatans and the Fraudulent PACE Trial
"In a blistering take-down published on Tuesday, Guardian columnist George Monbiot indicted Professor Sir Simon Wessely, Professor Michael Sharpe and the rest of the GET/CBT ideological brigades for their decades-long promotion of discredited theories about and bogus research into the cluster of illnesses now being called ME/CFS."
Article l Thread

ME Global Chronicle
Failings in the care of patients with Very Severe ME by Dr Nigel Speight
An important and shocking article about the mistreatment and denial of appropriate care of people with very severe ME/CFS in some UK hospitals that is still happening today, against the recommendations in the 2021 NICE guideline.
Article | Thread

Aotearoa New Zealand ANZMES
National Advisory on ME releases Best Practice Guidance with clinician and researcher support
There is a call for national guidelines to be developed in consultation with ANZMES, to ensure only the latest evidence-based research and data is adopted and used by the health profession. New Zealand-based and international ME/CFS and long COVID researchers and clinicians have signed their names in support of this newly released guidance.
Best Practice | Thread

UK Dr Claire Taylor gave powerful evidence at the Scottish Covid-19 Inquiry about the impact of Long Covid, and parallels with ME/CFS.
Video | Thread

Sweden Patient advocate "Eremiten" has made a podcast where she takes an investigative deep dive into the story behind a grant from the IKEA's founder's foundation to the controversial physician Jonas Axelsson's research into ME.
Thread with presentation and links to each podcast episode

Journal of Physiotherapy
Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management - Sarah Tyson
A sort article on the NICE guideline from the point of view of a physiotherapist.
Article | Thread

STAT Inside a push to create an NIH office for post-infection chronic illness
About the call from the Federation of American Scientists to create a new NIH office for post-infection chronic conditions including ME/CFS. The article discusses how this office could be organised with comments from both researchers and patient advocates
Article l Thread
Revolutionizing Research And Treatments For Infection-Associated Chronic Diseases by Ryan Prior published by the Federation of American Scientists details their proposals to the NIH.
Article | Thread

USA - Solve M.E. has extended the registration deadline for Advocacy Week to midnight on Monday, March 18. Advocacy Week 2024 runs from April 15-19. See website or thread for details.
Website | Thread

Long Covid Awareness Day was March 15. Some news outlets ran stories about Long Covid. There were also several in person protests around the world. We have a thread with links to news coverage, social media posts, and videos.
Thread

The Star Ledger We ignored AIDS. Let’s not repeat the mistake on long COVID.
Editorial from a New Jersey newspaper comparing Long Covid to the AIDS crisis, and asking for more research funding from the government. Quote: "We had an 'Operation Warp Speed' for vaccines. Why not long COVID?" Mentions the protest in Washington, DC for Long Covid Awareness Day (March 15).
Article | Thread

Classical Music UK Composer creates concerto to shine a light on chronic illness
Danish composer Martin Byrial's latest concerto is based on stories sent to him from families fighting chronic illness. (free registration required to read article)
Article | Thread
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Research news and commentary

USA NIH Long Covid phase 2 trial opens
Part of NIH’s RECOVER Initiative, trials are initially testing three treatments for symptoms such as fast heart rate, dizziness and fatigue. The trials will initially examine three potential treatments: IV immunoglobulin, ivabridine and conservative POTS management.
NIH Announcement | Thread

USA "Characterizing Non-Restorative Sleep in Post-Viral Disease to Advance Intervention Innovations"
This research study at Beth Israel Deaconess Medical Center in Boston is recruiting ME/CFS patients. Contact astokes1@bidmc.harvard.edu for information.
Website | Thread

JAMA
NIH Study Provides Long-Awaited Insight Into [ME/CFS] -Quinn Eastman
Gives some of the background to the study, and summarises key findings and and responses from patient groups and clinicians.
“Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected,” Nath said in an interview with JAMA. “It’s a systemic disease, and the people living with it deserve to have their experiences taken seriously.”
Article | Thread

Trial by Error by David Tuller
Will MAGENTA's Null Results Finally End Professor Crawley's Long 'Reign of Error'?
About Professor Crawley's null result study on GET, which was surprising, "Given that leading members of the GET/CBT ideological brigades, like Professor Crawley, long ago adopted a Trumpian strategy toward evidence and truth..". Yet this doesn't mean Tuller is ready to give Professor Crawley any credit for integrity and he's pointing to an unacceptable study design even here.
Article l Thread

Letter to BMJ Seeking Correction in Study of Long Covid Physical-and-Mental Rehabilitation Program
An excellent letter to the editor-in-chief of BMJ from David Tuller, cosigned by 12 experts. The letter raises criticism of a rehab study for Long Covid (REGAIN study).
"The paper—and in particular the abstract’s conclusion that the intervention was “clinically effective” for health-related quality of life—must be corrected to reflect that the primary outcome results did not meet the threshold for “clinically important” or “minimally important” difference recommended for the measure in question."
Article l Thread
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See next post for the research section...

 

Week beginning 11th March 2024

Part 2 of 2

Research

ME/CFS research

Advanced Sensor Research
A Novel Fluorogenic Probe Reveals Lipid Droplet Dynamics in ME/CFS Fibroblasts - Ding et al.
A new technique tested on fibroblast cells from people with ME/CFS.
"The results indicate the presence of larger but fewer LDs in ME/CFS fibroblasts compared to the healthy counterparts, accompanying with frequent LD-mitochondria contacts, suggesting potential upregulation of lipolysis in ME/CFS connective tissue like fibroblasts."
Article | Thread

Acta Physiologica
[ME/CFS] from current evidence to new diagnostic perspectives through skeletal muscle and metabolic disturbances - Pietrangelo et al.
Reviews biomedical evidence, and proposes "the hypothesis that skeletal muscle tissue offers novel opportunities for diagnosis and treatment of this syndrome."
Article | Thread

Research Square (Preprint)
Changing patterns of multimorbidity among patients with ambiguous diagnoses: The case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Bragée et al.
In this Swedish retrospective study of 549 ME/CFS patients, "fifty percent of all patients had more than eight diagnoses—up to 32 diagnoses per year—during the last twelve months of the study period."
Article | Thread

Long Covid research

Progress in Cardiovascular Diseases
Developing effective strategies to optimize physical activity and cardiorespiratory fitness in the long Covid population- The need for caution and objective assessment — Faghy et al.
"In this review, the authors present an update to the literature relating to PESE in Long Covid and make the case for evidence-based guidelines that support the design and implementation of safe rehabilitation approaches for people with Long Covid."
Article | Thread

Physiotherapy Theory and Practice
Comparison of the muscle oxygenation during submaximal and maximal exercise tests in patients post-coronavirus disease 2019 syndrome with pulmonary involvement — Başak Kavalcı Kol et al.
"The main findings of this study were that post-COVID-19 patients with lung involvement have lower skeletal muscle oxygen saturation and higher total hemoglobin and physiological responses of the cardiorespiratory system during maximal exercise compared to submaximal exercise."
Article | Thread

BMC Public Health
An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid — Leggat et al.
"the present study, like past studies, suggests that the main barrier to healthcare provision, may be healthcare professionals’ attitudes to Long Covid. With individuals now risking economic burden by accessing private healthcare provision, our findings suggest such consultations will not provide any greater support unless those healthcare practitioners believe and validate their Long Covid experiences."
Article | Thread

Seminars in Immunology
Systems analysis of innate and adaptive immunity in Long COVID — Peluso et al.
The UCSF team give an overview of their hypotheses for immune system dysregulation in long Covid.
Article | Thread

Clinical Neurophysiology
Resting-State Eeg Rhythms Are Abnormal In Post Covid-19 Patients With Brain Fog Without Cognitive And Affective Disorders — Babiloni et al.
"In post-COVID patients with no chronic diseases and cognitive/psychiatric disorders, “brain fog” can be associated with abnormal posterior rsEEG alpha rhythms and subjective fatigue."
Article | Thread

Journal of Physical Activity and Health
Physical Activity, Long-COVID, and Inactivity: A Detrimental Endless Loop — Giuseppe Lippi et al.
An astonishingly simplistic paper that naively promotes exercise to prevent and recover from long Covid. Seems not to have understood the findings of some important papers it references and completely ignores the fact that numerous elite athletes have been forced to retire due to long Covid.
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 18th March 2024

News, advocacy and articles

Science for ME letter to Cochrane On 17th March the S4ME committee wrote again to key people at Cochrane about the Exercise therapy for ME/CFS review, formally presenting the 70 organisations and 10,500 petition signatories supporting withdrawal of the 2019 review. The letter set out ten reasons the review should be withdrawn on the grounds of evidence of serious harms, including the authors' failure to properly review harms evidence, and the biases and conflicts of interest of the review's advisors. An update about this letter has been added to the petition.
Letter | Petition | Petition thread

Europe
The European petition on ME/CFS started by Evelien Van Den Brink in 2019 has been closed by the European Parliament's Committee on Petitions (PETI).
Thread

Nature
'Four years on: the career costs for scientists battling long COVID' - Kim
"Many high-achieving researchers with long COVID say that one of their biggest struggles is the loss of their identities that had been pegged to their cognitive abilities and productivity. Often, they learnt the hard way that pushing themselves beyond their limits would only cause them to crash later."
Article | Thread

Australia Australians Abandoned by Healthcare, Sentenced to “Living Death”
Amanda Francey writes about the situation of those with severe and very severe ME/CFS. "Outdated health guidelines and medical fallacies have left thousands of patients neglected and marginalised."
Article | Thread

Byline Times 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
The heartbreaking and currently ongoing critical case of severe ME sufferer Millie McAnish who wrongly got sectioned after being admitted to hospital in order to have a feeding tube fitted. Her mother and primary caregiver has been banned from visiting her and another family member says Millie "has declined massively in hospital".
Article l Thread

ME/CFS Alert, Episode 137: Interview with Canadian Author Nora Gold
Llewellyn King interviews the academic and prize-winning author Nora Gold who has written the book "In Sickness and In Health" about her own struggle with ME.
Interview on YouTube l Thread

Life of a Scientist blog Treading Fine Lines by Harriet Carroll
Musings on the interactions of scientists and patients with ME/CFS and Long Covid from the writer's perspective of being both. Issues raised include scientists and clinicians who expect respect from patients and react defensively when patients critique their work, and the toxic culture of patients idolising some researchers and clinicians.
Article | Thread
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Resources

Emerge Australia Your child or young person with ME/CFS or Long COVID and school
"The information on this page is designed to help you support and advocate for your child with ME/CFS or Long COVID at school."
This useful guide includes information on pacing, PEM and how ME/CFS and Long Covid affect a child's ability to attend school.
Article | Thread
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Research news and commentary

Germany
The Post-COVID Kids Bavaria 2.0 research project at the Klinikum rechts der Isar of the Technical University of Munich (MRI TUM) was launched in September 2023. The project is coordinated by Prof. Dr. Uta Behrends and funded by the Bavarian State Ministry of Health and Care and the ME/CFS Research Foundation.
Article | Thread

Australia Study into motor neuron firing abnormalities
Emerge calls for volunteers (ME and healthy) in Perth, WA.
Get Involved | Thread

Jarred Younger An important change from local to remote clinical trials
In this short video (10 minutes) Dr. Younger gives an update on his recent shift from traditional clinical trials to remote clinical trials which allows individuals to participate from anywhere in the United States.
Video | Thread

Nina E. Steinkopf A million dollar industry of wasted research
Patient advocate Nina E. Steinkopf has uncovered several unacceptable aspects concerning a Danish study on adolescents with so-called "multisystem functional somatic disorders".
Article l Thread

UK DecodeME The March 2024 webinar is now available.
20 minute update with Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke, followed by 20 minutes Q & A.
Video | Transcript | Thread

Trial by Error by David Tuller Professor Chris Ponting on the NIH's Findings and the Latest on the Genome-Wide Association Study Update
Tuller has interviewed Professor Ponting on the recent NIH intramural study to which he comments: "What the study basically found is that these 17 people are unwell and are different from the healthy volunteers in a variety of ways. But we already know they’re unwell. That’s not telling me anything new. What I would like to know is, mechanistically, what’s going wrong with the 17 individuals? That question was not addressed." As the leader of the ongoing genome-wide association study, DecodeME, he updates that there has been a delay due to the DNA extraction process taking longer time than expected, but that the study is progressing.
Article l Thread

The Sick Times Errors, omissions, potential bias: Why some ME experts are calling for a retraction of the NIH intramural study - Betsy Ladyzhets and Miles Griffis
An excellent, well researched article describing problems with the study and calls for retraction. Problems with the appointment of known proponent of the pyschosomatic view of ME/CFS, Brian Walitt, to lead the study, and his misuse of a psychiatric test to falsely support the hypothesis of 'effort preference', are highlighted as major sources of bias in the study's conclusions, along with many other problems.
Article | Thread

Thoughts about M.E. NIH study: Walitt strikes again by Jeannette Burmeister
An excellent article covering the history of Walitt's psychosomatic view of ME/CFS, his support for the unevidenced and harmful views of Wessely and Shorter, and the wider problem of the same views impacting research at NIH, including the intramural study, with Walitt's invention of the term 'effort preference'.
Article | Thread

Long COVID Research Breakdown
How federal research continues failing people with myalgic encephalomyelitis by Janna Moen
A neuroscientist who has Long Covid/ME herself, Janna Moen, has written a piece on the history of ME/CFS. The subtitle is "The long and twisted history of psychologizing myalgic encephalomyelitis and post-acute infection syndromes."
Article l Thread
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Research

ME/CFS and related research

Frontiers in Neuroscience
Machine Learning Algorithms for Detection of Visuomotor Neural Control Differences in Individuals with PASC and ME - Ahuja et al
"In this study, we introduce a novel method to detect the likelihood of PASC or ME using a wearable four-channel headband that collects Electroencephalogram (EEG) data." The authors have developed an algorithm with a high level of accuracy that might be useful for monitoring people with ME/CFS and PASC.
Article | Thread

Digital Biomarkers
Review article: Fatigue-Related Changes of Daily Function: Most Promising Measures for the Digital Age
"...changes of the following parameters: physical activity, independence of daily living, social participation, working life, mental status, cognitive and aerobic capacity, and supervised and unsupervised mobility performance have the highest potential to reflect fatigue-related changes of daily function. These parameters thus hold the greatest potential for quantitatively measuring fatigue in representative diseases in real-life conditions, e.g., with digital wearable technologies."
Article | Thread

Long Covid research

Preprint: MedRxiv
Role of the complement system in Long COVID — Vadim Farztdinov et al.
Refutes findings in a recent high-profile study. "In seeking to explain why age and BMI are such strong predictors of PACS in this study, we noticed that the cohort was substantially imbalanced for age and BMI." "we used a balanced factorial design strategy by splitting all patients in disease groups by age and sex." "none of the complement components was significantly changed in PACS, using the same significance level set by Cervia-Hasler et al."
Article | Thread

Social Science & Medicine
The double invisibility of Long Covid in children — Wild et al.
"Children and adolescents with Long Covid struggled to signal the severity of their condition and elicit care in the manner expected for other debilitating illnesses. This was exacerbated by assumptions and stereotypes about unwell children and adolescents, and their parents, and questioning of their candidacy as reliable, trustworthy patients."
Article | Thread

Thorax
Impact of post-COVID-19 condition on health status and activities of daily living: the PRIME post-COVID study — Maarten Van Herck et al.
"Individuals with PCC have substantial and clinically meaningful worse health and more impairment in ADL than negative controls, irrespective of sex, age, pre-existing comorbidities, time since the test and health status prior to the test"
Article | Thread

Microcirculation
Increased Angio-Derived Index of Microcirculatory Resistance Within a Timeframe of 30–60 days After COVID-19 Infection — Lei Dong et al.
"Long-term COVID-19 patients who experience chest pain without evidence of myocardial ischemia exhibit an increase in AMR, and [coronary microvascular dysfunction] may be one of the reasons for this increase."
Article | Thread

Nature Scientific Reports
Neurofilament light chain and glial fibrillary acid protein levels are elevated in post-mild COVID-19 or asymptomatic SARS-CoV-2 cases — Plantone et al.
"Our results suggest an ongoing damage involving neurons and astrocytes after SARS-Cov2 negativization, which reduce after ten months even if still evident compared to HCs."
Article | Thread

PLOS ONE
SARS-CoV2 evokes structural brain changes resulting in declined executive function — Daniel Deuter et al.
"Affected areas were mainly found in the frontal and temporal lobe, the basal ganglia, the cerebellum, and in fiber tracts connecting these areas with a left hemispheric accentuation." "These findings were also consistent with deficits found in the neuropsychological tests."
Article | Thread

Physical Therapy
Decline in Mobility and Balance in Persons with Post–COVID-19 Condition — Feldman et al.
"We found nearly half of those with PCC had a decline in mobility and over a third reported deteriorations in balance. The substantial prevalence of PCC, its symptoms and effects on mobility and balance"
Article | Thread

Journal of Medical Virology
A retrospective cohort study on early antibiotic use in vaccinated and unvaccinated COVID-19 patients — Carlo Brogna et al.
"The bacteriophage behavior of SARS-CoV-2 during the acute and post-COVID-19 phases appears to be an important factor in the development of the disease." "it is worth noting that a significant number of patients who received antibiotics in the first 3 days and for a duration of 7 days, during the acute phase did not develop LC."
Article | Thread

BMJ Public Health
Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence from the British COVID Symptom Study Biobank —
"GJH may be regarded by many clinicians as an incidental finding or simple variation of normality, where hyperextensible joints may almost represent a clinical ‘red herring’. Our findings suggest an increased risk of not recovering fully from COVID-19 for those with joint hypermobility."
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

Week beginning 25th March 2024

Part 1 of 2

News, advocacy and articles

Australia Emerge presented short video responses to the Parliamentary Long Covid enquiry
Forum member Simone Eyssens gave a presentation of the reality of ME/CFS and Prof. David Putrino followed with a summary of how LC is not a functional disorder and that neither psychological therapies or the rehabilitation paradigm are effective in such post-acute infection syndromes.
Presentation (SE) | Presentation (DP) | Thread

Public Health Expert Briefing
Long Covid in Aotearoa NZ: Risk assessment and preventive action urgently needed — Amanda Kvalsvig et al.
"This Briefing presents findings from a review of Long Covid to guide NZ’s response to this public health threat. The author group includes researchers, clinicians, and people with lived experience of Long Covid. Statements in the Briefing are further discussed and fully referenced in the review"
Article | Thread

UK conferences Recent conferences run by the NHS on Long Covid, and by Kings Health Partners on Functional Neurological Disorder, have been reported on social media. There are concerns about diagnostic and treatment approaches being promoted, including the psychosomatic approach for ME/CFS.
Thread | Thread

The Canary Trivialising long Covid? Scientists and media covering ME/CFS in Australia wrote the playbook
A detailed and well researched article by Hannah Sharland looking into the entangled story behind the psychologising of ME/CFS and how this has "paved the way to punching down on long Covid patients".
Article l Thread

Undark Failure to Define Long Covid Will Impede Research Progress
Good opinion piece by Leonard A. Jason on the importance of accurate case definitions of Long Covid in research. He points to how the multiple case definitions of ME/CFS has made it difficult to develop biomarkers and contributed to wrong categorisations by doctors.
Opinion piece l Thread

Sweden The newspaper Arbetet writes about the Swedish Social Insurance Agency continuing to turn down benefit applications from patients with ME or fatigue despite a court ruling from 2022 where it was made clear that the Agency can't turn down applications only due to lack of objective findings. In these cases a rule should be made based on the doctor's assessment. Yet, the lawyer Jimmy Laine says it's still "practically impossible for many with ME and fatigue to have their application approved".
Article l Thread

Science News How patient-led research could speed up medical innovation
An article by Betsy Ladyshetz on how patient involvement in medical research can be beneficial for everyone, with topical examples from current research projects into ME/CFS and Long Covid. David Putrino says: "Patient-led research “moves orders of magnitude faster than traditional modes of research”. Forum members have raised concerns about social media based experimentation with unevidenced protocols.
Article l Thread

UK Pulse Researchers develop online tool to encourage people to seek support for long Covid
"Based on UK research studies into the condition and its impact, particularly in minority ethnic groups, the tool includes a symptom checker and advice on seeking support."
Article | Thread
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Research news and commentary

Trial by Error by David Tuller
We Asked BMJ to Correct a Paper; BMJ Requested a Rapid Response; We Have Declined
David Tuller has, together with 12 colleagues, asked BMJ for a correction of the REGAIN study, as the study's claim of rehabilitation as a clinically effective intervention is incorrect. The BMJ editor requested a rapid response from them instead of making the correction. Tuller shares their answer to the editor on why they decline and place the responsibility on The BMJ's editorial team.
Article l Thread

My Letter to Lead REGAIN Trial Investigator Seeking Correction of Bogus Claims of Clinical Effectiveness
David Tuller has also sent a letter to the lead investigator and lead author of the REGAIN trial urging him to make a correction of the study.
Article l Thread

Recruiting The ME/CFS research team at Haukeland University Hospital (Fluge/Mella et al) is recruiting ME patients in Bergen, Norway for a study on developing a gentle exertion test.
Thread with more information
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Coming events

Bateman Horne Center - Free Online Support Groups
Tuesday, April 9, 1:00 - 2:00 PM Mountain Time
Topic: Creating Purpose Out of the Chronic Illness Experience
Tuesday, April 16, 1:00 - 2:00 PM Mountain Time
Topic: Fostering Resiliency Amidst Chronic Illness
See thread for times in your time zone.
Event Calendar | Thread
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For the research section go to the next post.

 

Week beginning 25th March 2024

Part 2 of 2

Research

ME/CFS and related research

Frontiers in Immunology
Longitudinal Cytokine and Multi-Modal Health Data of an Extremely Severe ME/CFS Patient with HSD Reveals Insights into Immunopathology, and Disease Severity - Jahanbani, Dafoe, Davis et al.
"As part of this study, we introduced an updated platform and two applications, ME-CFSTrackerApp, and LexiTime, facilitating real-time symptom tracking and enhancing physician-patient communication."
"Our longitudinal cytokine profiling underscores the significance of Th2-type cytokines and synergistic activities between mast cells and eosinophils, leading to skewing of Th1 toward Th2 immune responses in ME/CFS pathogenesis, especially in cognitive impairment and sensorial intolerance."
Abstract | Thread

OSF preprints
Decade old approach, relabelled as a new one by the Oslo Chronic Fatigue Consortium, is harmful and does not lead to objective improvement in ME/CFS or long Covid
The response by Mark Vink and Alexandra Vink-Niese to the paper by the Oslo Chronic Fatigue Consortium was rejected by the journal Scandinavian Journal of Primary Health Care. It was posted on a preprint server instead.
Article | Thread

Cells
Recent Research Trends in Neuroinflammatory and Neurodegenerative Disorders - Cohen et al.
This paper discusses ME/CFS as a chronic disorder that is associated with neuroimmune dysfunctions.
Article | Thread

British Journal of Health Psychology
"The presence of attentional and interpretation biases in patients with severe MS-related fatigue" - De Gier et al.
This paper from the Dutch CFS research group of Hans Knoop argues that Multiple Sclerosis patients "tend to interpret ambiguous information in a somatically threatening way. This may feed into unhelpful ways of dealing with symptoms, possibly contributing to perpetuation of severe fatigue in MS." The research included a comparitor group with ME/CFS.
Article | Thread

Long Covid research

Biomedicines
Red Blood Cell Adenylate Energetics Is Related to Endothelial and Microvascular Function in Long COVID — Romanowska-Kocejko et al.
"the outcomes of this study indicate that dysregulation of metabolic processes in erythrocytes with the co-occurring endothelial and microvascular dysfunction is associated with diminished intracellular oxygen delivery, which may partly explain long COVID-specific symptoms such as physical impairment and fatigue."
Article | Thread

Virus Research
Can inflammatory plasma proteins predict Long COVID or Fatigue severity after SARS-CoV-2 infection? — Schmitz et al.
"Several immune response markers appear to be related to Long COVID and severity of fatigue. Especially SRPK2 and ITGA6 are strongly associated with severity of fatigue in patients with prior SARS-CoV-2 infection."
Article | Thread

European Journal of Immunology
Age-related transcript changes in type I interferon signaling in children and adolescents with long COVID — Matteo Fracella et al.
"Our findings lead to the hypothesis that the IFN-I pathway is involved in immunopathological changes in children and adolescents 3–6 months after recovery from symptomatic SARSCoV-2 infection. We also found age-related differences in IFNI gene expression, with upregulation of IFN-I genes in adolescents and downregulation of expression in children."
Article | Thread

Nature Scientific Reports
Higher level of physical activity reduces mental and neurological symptoms during and two years after COVID-19 infection in young women — Takács et al.
"In the present study, cardiovascular symptoms were more frequent in the moderate PA group regardless of the symptoms in acute COVID-19. In most cases, cardiovascular symptoms co-occurred with neurological symptoms."
Article | Thread

Cells
Blood Markers Show Neural Consequences of LongCOVID-19 — Tang et al.
"To search for neurological markers of LongC, we investigated the soluble biomolecules present in the plasma and the proteins associated with plasma neuronal-enriched extracellular vesicles (nEVs)" "nEVs from people with nLongC had significantly elevated protein markers of neuronal dysfunction, including amyloid beta 42, pTau181 and TDP-43."
Article | Thread

International Journal of Molecular Sciences
Microfluidic Isolation of Neuronal-Enriched Extracellular Vesicles Shows Distinct and Common Neurological Proteins in Long COVID, HIV Infection and Alzheimer’s Disease — Pulliam et al.
"One common protein (BST1) was decreased in LongC and increased in HIV. Six proteins (MIF, ENO1, MESD, NUDT5, TNFSF14 and FYB1) were expressed in both LongC and AD and no proteins were common to HIV and AD."
Article | Thread

Frontiers in Nutrition
Post-COVID-19 condition: systemic inflammation and low functional exercise capacity — de Castro et al.
"This study was able to unravel specific inflammatory markers associated with different symptom profiles, representing a contribution to the development of targeted interventions and personalised treatments. We also demonstrated that men and women suffering from PCC must be considered separately. Therefore, the variability in PCC must be taken in regard together with sex-specific differences."
Article | Thread

Nature Scientific Reports
Brain temperature and free water increases after mild COVID-19 infection — Sharma et al.
"This study is the first to investigate the effects of COVID-19 on brain temperature, microstructure, and brain volume in participants who were scanned before and after experiencing mild COVID-19 infection with or without PASC."
Article | Thread

Journal of Clinical Medicine
The Effect of Sex on the Risk of Long-COVID and Cardiovascular Complications in Healthy Patients without Comorbidities: Data from a Polish Long-COVID Cardiovascular (PoLoCOV-CVD) Study — Bielecka-Dabrowa et al.
"One year post-COVID-19 recovery, regardless of age and BMI, healthy females more often suffered from LC symptoms than males. They had lower [mean arterial pressure] and [pulse pressure] in 24h ABPM, more often had higher HRs and arrhythmia in 24 h ECG monitoring, and fewer ECG abnormalities than males."
Article | Thread

NeuroImmune Pharmacology and Therapeutics
The S1 subunits of SARS-CoV-2 variants differentially trigger the IL-6 signaling pathway in human brain endothelial cells and downstream impact on microglia activation — Michael Stangis et al.
"In conclusion, the S1 subunit of the S protein of the D614 variant of SARS-CoV-2 and the Delta variant differentially induce IL-6 release and phosphorylation of STAT3 in HBMEC. The secretome of HBMEC following exposure to the S1 subunit of the D614 variant can increase STAT3 signaling in microglia."
Article | Thread

Endocrinology, Diabetes & Metabolism Case Reports
Use of testosterone replacement therapy to treat long-COVID-related hypogonadism — Alessandro Amodeo et al.
"Following the TRT, both serum testosterone level and hypogonadism-related symptoms were improved, but poor effects occurred on general and neuropsychiatric symptoms and QoL. Therefore, hypogonadism does not appear to be the cause of neurocognitive symptoms, but rather a part of the long-COVID syndrome"
Article | Thread

Biomedicines
Pituitary–Adrenal Axis and Peripheral Immune Cell Profile in Long COVID — Alijotas-Reig et al.
"The data indicated a dysregulation in certain immune cells, pointing to immune activation. No overt hyperinflammation was observed in the Long COVID group."
Article | Thread

Journal of Translational Medicine
Bulk RNA sequencing for analysis of post COVID-19 condition in adolescents and young adults — Sommen et al.
"We have found 13 differentially expressed genes associated with PCC. Enriched pathways were related to interferon-signalling and anti-viral immune processes."
Article | Thread

Viruses
Hereditary Connective Tissue Diseases and Risk of Post-Acute SARS-CoV-2 — Bartlett et al.
"Patients with a diagnosis of POTS made up 2.65% of patients, which is significantly greater than the estimated ~1% prevalence worldwide. None of the patients with hCTD and PASC were diagnosed with POTS, MCAS, or CE/MFS at admittance to the hospital."
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube

 

For next week's news go to this thread:

News in Brief - April 2024