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News in Brief - April 2024
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Week beginning 1st April 2024
News, advocacy and articles
Aotearoa New Zealand The Helen Clark Foundation Webinar
"Long Covid – are we taking it seriously enough?"
Panel included Profs Michael Baker, Paula Lorgelly and Warren Tate, with Jenene Crossan commenting as founder of Long Covid Support Aotearoa
Foundation | Webinar | Thread
Aotearoa New Zealand Are insurers wrongly declining ME/CFS claims?
"Some people with Chronic Fatigue Syndrome say they are being denied personal insurance because insurers deem it to be a mental health issue, not a biomedical issue." Nine to Noon host Kathryn Ryan speaks with Professor Warren Tate and a person with ME/CFS whose insurance claim has been denied.
RNZ | Thread
YouTube Who Funds Research? l Why The Charity Sector is Vital For Long Covid & ME/CFS
An interesting conversation between Long Covid YouTuber Harry Boby and patient advocate Peter White discussing the importance of research funding by charities, in particular for ME, CFS and Long Covid.
Youtube video l Thread
Science in the News Long COVID: The latest in a series of unexplained post-acute infectious syndromes?
In this blog on HARVARD Kenneth C. Griffin's "Science in the news" website, Ya'el Courtney looks into viruses that lead to post-acute syndromes and what they have in common. She asks whether ME/CFS is "more accurately described as a spectrum of post-acute infectious syndromes".
Article l Thread
Germany The regional news service Hessenchau has an article about Long Covid and ME in children, and a competence center at the Kassel Clinic teaching these patients pacing.
Article l Thread
Popsugar ME/CFS Isn't Just Misunderstood, It's Actively Neglected
This article touches on many issues surrounding ME/CFS diagnosis and treatment. There are quotes from several people diagnosed with either ME/CFS or Long Covid.
Article | Thread
...............
Research news and commentary
Lisbon conference
The recording of the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, which took place from 3-4 April in Lisbon is now available online.
Video | Thread
USA - NIH ME/CFS Research Roadmap Webinars
A video recording and transcript of the March 4 webinar on the ME/CFS Research Roadmap are now available on the NIH ME/CFS website.
Video | Transcript | Thread
Science for ME committee open letters to the trustees of the UK ME Association. The committee has written to the MEA to detail members' concerns about the MEA funded project developing a new clinical assessment toolkit using PROMs (patient reported outcome measures) intended for use in NHS ME/CFS specialist services.
Project details | S4ME letters | Thread
Trial by Error by David Tuller Yet Another Long Covid Study with Bogus Claims Published by a Prestige Journal
A critical look at a study with "unacceptable methodological shenanigans" claiming physical activity in young women with "post-covid condition" (PCC) can reduce symptoms.
Article l Thread
Nature Long COVID still has no cure - so these patients are turning to research
"With key long COVID trials yet to yield results, people with the condition are trying to change how clinical trials are done."
Article l Thread
..............
Coming events
Solve M.E. - Comparing immunological signatures between Long Covid and ME/CFS
Wednesday, April 24
12:30 pm Pacific / 3:30 pm Eastern
Registration | Thread
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
................
Research
ME/CFS and related research
Current Problems in Cardiology
Review article: Attenuating Post-exertional Malaise in ME/CFS and Long-COVID: Is Blood Lactate Monitoring the Answer? - Faghy et al.
"Lactate monitoring presents an opportunity to support those living with ME/CFS and Long COVID, by allowing patients and practitioners to determine the intensity and anaerobic contribution to everyday tasks which could aid the development of pacing strategies that prevent PEM/PESE."
Article | Thread
Nordic Journal of Psychiatry
Exploring levels of TSH and FT4 in patients with chronic fatigue syndrome CFS, fibromyalgia FM and healthy controls did not reveal any associations between fatigue score and level of thyroid hormones - Skorpen et al.
Fukuda criteria were used for CFS diagnosis. The authors conclude that, although they found no between group differences, "we suggest future studies to examine the field further by exploring the influence of thyroid receptors and responses of the thyroid hormone cascade".
Article | Thread
Frontiers in Immunology
The gastrointestinal microbiota in the development of ME/CFS: a critical view and potential perspectives - Stallmach et al.
This review discusses the findings regarding alterations in the gastrointestinal microbiota and its microbial mediators in ME/CFS.
Article | Thread
BioPsychoSocial Medicine
Time-dependent complexity characterisation of activity patterns in patients with Chronic Fatigue Syndrome - Rabaey et al.
The physical activity patterns of 7 CFS patients were recorded over a period of 3 weeks. The authors conclude that "the complexity of a Chronic Fatigue Syndrome patient’s physical activity signal does not suffice to characterise their high-level functioning over time."
Article | Thread
Long Covid research
Journal of Proteome Research
Reinforcing the Evidence of Mitochondrial Dysfunction in Long COVID Patients Using a Multiplatform Mass Spectrometry-Based Metabolomics Approach — Sara Martínez et al.
"We report specific metabolites altered in Long COVID, mainly related to a decrease in the amino acid metabolism and ceramide plasma levels and an increase in the tricarboxylic acid (TCA) cycle, reinforcing the evidence of an impaired mitochondrial function."
Article | Thread
Nature Microbiology
Brain exposure to SARS-CoV-2 virions perturbs synaptic homeostasis — Partiot et al.
"Here we show that SARS-CoV-2 triggers the up-regulation of synaptic components and perturbs local electrical field potential." "SARS-CoV-2 induces aberrant presynaptic morphology and increases expression of the synaptic components Bassoon, latrophilin-3 (LPHN3) and fibronectin leucine-rich transmembrane protein-3 (FLRT3)."
Article | Thread
Brain
Brain and cognitive changes in patients with long COVID compared with infection-recovered control subjects — Serrano del Pueblo et al.
"physical symptoms and cognitive complaints in Long COVID had previously been attributed to the psychological trauma associated with the aftermath of the health crisis, rather than impairment of the central nervous system. In contrast to that idea, our study supports the now increasing evidence for there being a diverse manifestation of neurological symptoms associated with cognitive alterations and brain changes."
Article | Thread
American Journal of Neuroradiology
Reduced Cortical Thickness Correlates of Cognitive Dysfunction in Post-COVID-19 Condition: Insights from a Long-Term Follow-up — Dacosta-Aguayo et al.
"The present study used a comprehensive neuropsychologic battery and a highly specialized MR imaging protocol to investigate brain volumes and cortical thickness and their associations with cognitive function in 53 relatively young participants. Our results showed that the cognitive deficits were associated with changes in brain macrostructure, especially in the left parahippocampal region and the right caudal-middle-frontal region"
Article | Thread
Multidisciplinary Respiratory Medicine
Gas exchange abnormalities in Long COVID are driven by the alteration of the vascular component — Gianluca Imeri et al.
"most patients (76%) demonstrates a vascular pattern of gas exchange (i.e., DLNO/DLCO ≥ 110%) and there are patients with normal DLCO showing a significant decrease in capillary volume, which is the most common impairment in these patients (73%)"
Article | Thread
Preprint: MedRxiv
Increased fibrinaloid microclot counts in platelet-poor plasma are associated with Long COVID — Caroline F Dalton et al.
Replication study of microclots by a UK team using an automated quantification method and refining sampling handling to reduce the potential for processing artifacts.
Article | Thread
JAMA Network Open
Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition: A Randomized Crossover Clinical Trial — Andrea Tryfonos et al.
"In this study, nonhospitalized patients with PCC generally tolerated exercise with preserved cardiovascular function but showed lower aerobic capacity and less muscle strength than the control group. They also showed signs of postural orthostatic tachycardia and myopathy."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
Aotearoa New Zealand The Helen Clark Foundation Webinar
"Long Covid – are we taking it seriously enough?"
Panel included Profs Michael Baker, Paula Lorgelly and Warren Tate, with Jenene Crossan commenting as founder of Long Covid Support Aotearoa
Foundation | Webinar | Thread
Aotearoa New Zealand Are insurers wrongly declining ME/CFS claims?
"Some people with Chronic Fatigue Syndrome say they are being denied personal insurance because insurers deem it to be a mental health issue, not a biomedical issue." Nine to Noon host Kathryn Ryan speaks with Professor Warren Tate and a person with ME/CFS whose insurance claim has been denied.
RNZ | Thread
YouTube Who Funds Research? l Why The Charity Sector is Vital For Long Covid & ME/CFS
An interesting conversation between Long Covid YouTuber Harry Boby and patient advocate Peter White discussing the importance of research funding by charities, in particular for ME, CFS and Long Covid.
Youtube video l Thread
Science in the News Long COVID: The latest in a series of unexplained post-acute infectious syndromes?
In this blog on HARVARD Kenneth C. Griffin's "Science in the news" website, Ya'el Courtney looks into viruses that lead to post-acute syndromes and what they have in common. She asks whether ME/CFS is "more accurately described as a spectrum of post-acute infectious syndromes".
Article l Thread
Germany The regional news service Hessenchau has an article about Long Covid and ME in children, and a competence center at the Kassel Clinic teaching these patients pacing.
Article l Thread
Popsugar ME/CFS Isn't Just Misunderstood, It's Actively Neglected
This article touches on many issues surrounding ME/CFS diagnosis and treatment. There are quotes from several people diagnosed with either ME/CFS or Long Covid.
Article | Thread
...............
Research news and commentary
Lisbon conference
The recording of the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, which took place from 3-4 April in Lisbon is now available online.
Video | Thread
USA - NIH ME/CFS Research Roadmap Webinars
A video recording and transcript of the March 4 webinar on the ME/CFS Research Roadmap are now available on the NIH ME/CFS website.
Video | Transcript | Thread
Science for ME committee open letters to the trustees of the UK ME Association. The committee has written to the MEA to detail members' concerns about the MEA funded project developing a new clinical assessment toolkit using PROMs (patient reported outcome measures) intended for use in NHS ME/CFS specialist services.
Project details | S4ME letters | Thread
Trial by Error by David Tuller Yet Another Long Covid Study with Bogus Claims Published by a Prestige Journal
A critical look at a study with "unacceptable methodological shenanigans" claiming physical activity in young women with "post-covid condition" (PCC) can reduce symptoms.
Article l Thread
Nature Long COVID still has no cure - so these patients are turning to research
"With key long COVID trials yet to yield results, people with the condition are trying to change how clinical trials are done."
Article l Thread
..............
Coming events
Solve M.E. - Comparing immunological signatures between Long Covid and ME/CFS
Wednesday, April 24
12:30 pm Pacific / 3:30 pm Eastern
Registration | Thread
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
................
Research
ME/CFS and related research
Current Problems in Cardiology
Review article: Attenuating Post-exertional Malaise in ME/CFS and Long-COVID: Is Blood Lactate Monitoring the Answer? - Faghy et al.
"Lactate monitoring presents an opportunity to support those living with ME/CFS and Long COVID, by allowing patients and practitioners to determine the intensity and anaerobic contribution to everyday tasks which could aid the development of pacing strategies that prevent PEM/PESE."
Article | Thread
Nordic Journal of Psychiatry
Exploring levels of TSH and FT4 in patients with chronic fatigue syndrome CFS, fibromyalgia FM and healthy controls did not reveal any associations between fatigue score and level of thyroid hormones - Skorpen et al.
Fukuda criteria were used for CFS diagnosis. The authors conclude that, although they found no between group differences, "we suggest future studies to examine the field further by exploring the influence of thyroid receptors and responses of the thyroid hormone cascade".
Article | Thread
Frontiers in Immunology
The gastrointestinal microbiota in the development of ME/CFS: a critical view and potential perspectives - Stallmach et al.
This review discusses the findings regarding alterations in the gastrointestinal microbiota and its microbial mediators in ME/CFS.
Article | Thread
BioPsychoSocial Medicine
Time-dependent complexity characterisation of activity patterns in patients with Chronic Fatigue Syndrome - Rabaey et al.
The physical activity patterns of 7 CFS patients were recorded over a period of 3 weeks. The authors conclude that "the complexity of a Chronic Fatigue Syndrome patient’s physical activity signal does not suffice to characterise their high-level functioning over time."
Article | Thread
Long Covid research
Journal of Proteome Research
Reinforcing the Evidence of Mitochondrial Dysfunction in Long COVID Patients Using a Multiplatform Mass Spectrometry-Based Metabolomics Approach — Sara Martínez et al.
"We report specific metabolites altered in Long COVID, mainly related to a decrease in the amino acid metabolism and ceramide plasma levels and an increase in the tricarboxylic acid (TCA) cycle, reinforcing the evidence of an impaired mitochondrial function."
Article | Thread
Nature Microbiology
Brain exposure to SARS-CoV-2 virions perturbs synaptic homeostasis — Partiot et al.
"Here we show that SARS-CoV-2 triggers the up-regulation of synaptic components and perturbs local electrical field potential." "SARS-CoV-2 induces aberrant presynaptic morphology and increases expression of the synaptic components Bassoon, latrophilin-3 (LPHN3) and fibronectin leucine-rich transmembrane protein-3 (FLRT3)."
Article | Thread
Brain
Brain and cognitive changes in patients with long COVID compared with infection-recovered control subjects — Serrano del Pueblo et al.
"physical symptoms and cognitive complaints in Long COVID had previously been attributed to the psychological trauma associated with the aftermath of the health crisis, rather than impairment of the central nervous system. In contrast to that idea, our study supports the now increasing evidence for there being a diverse manifestation of neurological symptoms associated with cognitive alterations and brain changes."
Article | Thread
American Journal of Neuroradiology
Reduced Cortical Thickness Correlates of Cognitive Dysfunction in Post-COVID-19 Condition: Insights from a Long-Term Follow-up — Dacosta-Aguayo et al.
"The present study used a comprehensive neuropsychologic battery and a highly specialized MR imaging protocol to investigate brain volumes and cortical thickness and their associations with cognitive function in 53 relatively young participants. Our results showed that the cognitive deficits were associated with changes in brain macrostructure, especially in the left parahippocampal region and the right caudal-middle-frontal region"
Article | Thread
Multidisciplinary Respiratory Medicine
Gas exchange abnormalities in Long COVID are driven by the alteration of the vascular component — Gianluca Imeri et al.
"most patients (76%) demonstrates a vascular pattern of gas exchange (i.e., DLNO/DLCO ≥ 110%) and there are patients with normal DLCO showing a significant decrease in capillary volume, which is the most common impairment in these patients (73%)"
Article | Thread
Preprint: MedRxiv
Increased fibrinaloid microclot counts in platelet-poor plasma are associated with Long COVID — Caroline F Dalton et al.
Replication study of microclots by a UK team using an automated quantification method and refining sampling handling to reduce the potential for processing artifacts.
Article | Thread
JAMA Network Open
Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition: A Randomized Crossover Clinical Trial — Andrea Tryfonos et al.
"In this study, nonhospitalized patients with PCC generally tolerated exercise with preserved cardiovascular function but showed lower aerobic capacity and less muscle strength than the control group. They also showed signs of postural orthostatic tachycardia and myopathy."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 8th April 2024
News, advocacy and articles
USA Senate NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal
"Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened to effectively deal with this public health emergency." Comments to be submitted by Tuesday, April 23, 2024.
Details | Thread
Europe
The European ME Alliance published findings of a comprehensive survey that included responses from more than 11.000 ME/CFS patients across Europe. The survey reveals that long delays in ME/CFS diagnosis from disease onset are common, averaging 6.8 years.
Article | Thread
USA Solve ME has created an automated tool (meant for folks in the USA) that will contact your Member of Congress and ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).
Thread
Switzerland
On 6 April 2024 a lying demonstration for ME/CFS and Long Covid patients was held in Zurich.
Article | Thread
Austria Puls 24 has an article where David Putrino describes ME/CFS as one of the biggest medical scandals. He urges scientists to listen to patients and says preventative measures are crucial against the epidemic of long-Covid.
Article l Thread
The Canary
An ME inquiry? Not likely when a pillar of the psychologising establishment has access to the halls of power - Hannah Sharland
Article about Simon Wessely's multiple influential roles, including on the Judicial Appointments Commission which decldes who will head government inquiries, making one on ME/CFS unlikely. He is also on the NHS board.
Article | Thread
Austria
An article from March indicates that the Austrian Neurology Society plans to hold consensus-building meetings on ME/CFS. Unfortunately, The Austrian Society for ME/CFS (ÖG ME/CFS) has not yet been invited.
Article | Thread
Podcast In the latest episode of 'This Podcast Will Kill You' the two epidemiologists and disease ecologists Erin Welsh, PhD and Erin Allmann Updyke, MD, PhD discuss Long Covid. Next episode will be on ME/CFS.
Podcast l Thread
...........
Research news and commentary
Germany
The ME/CFS research foundation has made an overview of the current ME/CFS research in Germany and Austria.
Article | Thread
UK ME Association has published an update on the MEA funded project developing PROMs (Patient reported outcome measures) by the project leader Sarah Tyson.
In response to the Science for ME letters raising concerns about the project, Neil Riley, chair of MEA trustees, expresses support for the project and claims it will benefit patients and service provision.
MEA report | S4ME letters and reply | Thread
Trial by Error by David Tuller
"My Letter to Scientific Reports about New Study of Physical Activity and Long Covid"
Tuller shares a letter he has sent to the top editor at Scientific Reports, who recently published a problematic study on Long Covid and physical activity. "... the authors state categorically that, according to their findings, physical activity “reduces” symptoms. This use of explicit causal language is unwarranted and unjustified. It is just as plausible that those who had more symptoms were simply unable to perform physical activity at the same level as those who had less symptoms.
Article l Thread
"In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME"
About the desperate situation of severe ME patients not getting help from hospitals with necessary feeding tube fitting. "As has become apparent, the NHS does not have a clue what to do in these circumstances, nor does it provide much or anything in the way of guidance. That leaves clinicians, hospitals, and desperate families in limbo."
Article l Thread
...........
Research
ME/CFS and related research
The American Journal of Medicine
Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI - Thapaliya et al
"We measured absolute levels of brain neurochemicals in the posterior cingulate cortex in long COVID (n=17), ME/CFS (n=17), and healthy controls (n=10)"
"Our study identified significantly elevated Glutamate and N-acetyl-aspartate levels in long COVID and ME/CFS patients compared with healthy controls. No significant differences in brain neurochemicals were observed between the two patient cohorts, suggesting a potential overlap in their underlying pathology."
Article | Thread
Neurology
Actigraphic and Genetic Characterization of ME/CFS Phenotypes in the UK Biobank - Liu et al
CFS (n = 295) to controls (n = 63,133). "In addition to profound fatigue, those with CFS exhibited significantly reduced overall movement, lower acceleration amplitudes, and decreased temperature amplitudes compared to controls. Furthermore, certain SNPs associated with CFS were found to significantly influence both actigraphic measurements and subjective fatigue experiences."
Article | Thread
Neurology
Low Vasopressin in ME/CFS - Huhmar et al.
"Our findings suggest that deficiency of vasopressin secretion is a fundamental measurable part of the disease mechanisms, which may underlie a number of symptoms in ME/CFS, including the common complaint of orthostatic intolerance."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population - Gladwell et al.
The authors conducted interviews with 13 ME/CFS patients on the validity of the Chalder Fatigue Scale and conclude that the questionnaire "provides limited information about experiences of ME/CFS". Five items were identified by participants as lacking clarity, relating to behaviour not symptoms, or relating to sleepiness not fatigue.
Article | Thread
Frontiers in Endocrinology
Research progress in the treatment of chronic fatigue syndrome through interventions targeting the hypothalamus-pituitary-adrenal axis - Zhang & Wang
This review concludes that: "Despite some controversy, the current mainstream research evidence indicates that CFS patients have mild hypocortisolism, weakened daily variation in cortisol, a weakened response to the HPA axis, and an increase in negative feedback of the HPA axis."
Article | Thread
Exploration of Medicine
The influence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) family history on patients with ME/CFS - Jason & Ngonmedje
"Family histories of ME/CFS were significantly higher (18%) among the ME/CFS group than the non-ME/CFS controls (3.9%). In addition, patients with ME/CFS who had family histories of ME/CFS were more likely to have gastrointestinal symptoms than those with ME/ CFS without those family histories."
Article | Thread
Archive (preprint)
System and Method to Determine ME/CFS and Long COVID Disease Severity Using a Wearable Sensor - Sun et al.
The authors have created a single wearable sensor that measures how much participants are upright with their feet on the ground. This objective parameter, which they call UpTime could differentiate ME/CFS and Long Covid patients from healthy controls.
Article | Thread
Long Covid research
Nature Immunology
Large-scale phenotyping of patients with long COVID post-hospitalization reveals mechanistic subtypes of disease — Liew et al.
"we found markers of myeloid inflammation and complement activation in our large prospective posthospital cohort of patients with LC, in addition to distinct inflammatory patterns in patients with cognitive impairment or gastrointestinal symptoms. These findings show the need to consider subphenotypes in managing patients with LC"
Article | Thread
Preprint: BioRxiv
Cardiovascular symptoms of PASC are associated with trace-level cytokines that affect the function of human pluripotent stem cell derived cardiomyocytes — Jane Sinclair et al.
"Here, we observed a clear effect of cytokines in the femtogram range, suggesting that the trace-level cytokines in PASC-CVS individuals have physiological consequences."
Article | Thread
The American Journal of Medicine
Exploring Cognitive Dysfunction in Long COVID Patients: Eye Movement Abnormalities and Frontal-Subcortical Circuits Implications via Eye-Tracking and Machine Learning — Julián Benito-León et al.
"Our findings suggest impairments in frontal subcortical circuits in long COVID patients experiencing subjective cognitive complaints. Eye-tracking, combined with machine learning, offers a novel, efficient way to assess and monitor long COVID patients' cognitive dysfunctions, suggesting its utility in clinical settings for early detection and personalized treatment strategies."
Article | Thread
ANNALS of the New York Academy of Sciences Long COVID and post-acute sequelae of SARS-CoV-2 pathogenesis and treatment: A Keystone Symposia report - Durstenfeld et al
"In 2023, the Keystone Symposia held the first international scientific conference convening research leaders investigating the pathology of post-acute sequelae of COVID-19 (PASC) or Long COVID, a growing and urgent public health priority.
In this report, we present insights from the talks and workshops presented during this meeting and highlight key themes regarding what researchers have discovered regarding the underlying biology of PASC and directions toward future treatment."
Report l Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
USA Senate NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal
"Before formally introducing this legislation in the Senate, the HELP Committee wants to hear from the Long COVID community to get their views on how this proposal can be improved and strengthened to effectively deal with this public health emergency." Comments to be submitted by Tuesday, April 23, 2024.
Details | Thread
Europe
The European ME Alliance published findings of a comprehensive survey that included responses from more than 11.000 ME/CFS patients across Europe. The survey reveals that long delays in ME/CFS diagnosis from disease onset are common, averaging 6.8 years.
Article | Thread
USA Solve ME has created an automated tool (meant for folks in the USA) that will contact your Member of Congress and ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).
Thread
Switzerland
On 6 April 2024 a lying demonstration for ME/CFS and Long Covid patients was held in Zurich.
Article | Thread
Austria Puls 24 has an article where David Putrino describes ME/CFS as one of the biggest medical scandals. He urges scientists to listen to patients and says preventative measures are crucial against the epidemic of long-Covid.
Article l Thread
The Canary
An ME inquiry? Not likely when a pillar of the psychologising establishment has access to the halls of power - Hannah Sharland
Article about Simon Wessely's multiple influential roles, including on the Judicial Appointments Commission which decldes who will head government inquiries, making one on ME/CFS unlikely. He is also on the NHS board.
Article | Thread
Austria
An article from March indicates that the Austrian Neurology Society plans to hold consensus-building meetings on ME/CFS. Unfortunately, The Austrian Society for ME/CFS (ÖG ME/CFS) has not yet been invited.
Article | Thread
Podcast In the latest episode of 'This Podcast Will Kill You' the two epidemiologists and disease ecologists Erin Welsh, PhD and Erin Allmann Updyke, MD, PhD discuss Long Covid. Next episode will be on ME/CFS.
Podcast l Thread
...........
Research news and commentary
Germany
The ME/CFS research foundation has made an overview of the current ME/CFS research in Germany and Austria.
Article | Thread
UK ME Association has published an update on the MEA funded project developing PROMs (Patient reported outcome measures) by the project leader Sarah Tyson.
In response to the Science for ME letters raising concerns about the project, Neil Riley, chair of MEA trustees, expresses support for the project and claims it will benefit patients and service provision.
MEA report | S4ME letters and reply | Thread
Trial by Error by David Tuller
"My Letter to Scientific Reports about New Study of Physical Activity and Long Covid"
Tuller shares a letter he has sent to the top editor at Scientific Reports, who recently published a problematic study on Long Covid and physical activity. "... the authors state categorically that, according to their findings, physical activity “reduces” symptoms. This use of explicit causal language is unwarranted and unjustified. It is just as plausible that those who had more symptoms were simply unable to perform physical activity at the same level as those who had less symptoms.
Article l Thread
"In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME"
About the desperate situation of severe ME patients not getting help from hospitals with necessary feeding tube fitting. "As has become apparent, the NHS does not have a clue what to do in these circumstances, nor does it provide much or anything in the way of guidance. That leaves clinicians, hospitals, and desperate families in limbo."
Article l Thread
...........
Research
ME/CFS and related research
The American Journal of Medicine
Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI - Thapaliya et al
"We measured absolute levels of brain neurochemicals in the posterior cingulate cortex in long COVID (n=17), ME/CFS (n=17), and healthy controls (n=10)"
"Our study identified significantly elevated Glutamate and N-acetyl-aspartate levels in long COVID and ME/CFS patients compared with healthy controls. No significant differences in brain neurochemicals were observed between the two patient cohorts, suggesting a potential overlap in their underlying pathology."
Article | Thread
Neurology
Actigraphic and Genetic Characterization of ME/CFS Phenotypes in the UK Biobank - Liu et al
CFS (n = 295) to controls (n = 63,133). "In addition to profound fatigue, those with CFS exhibited significantly reduced overall movement, lower acceleration amplitudes, and decreased temperature amplitudes compared to controls. Furthermore, certain SNPs associated with CFS were found to significantly influence both actigraphic measurements and subjective fatigue experiences."
Article | Thread
Neurology
Low Vasopressin in ME/CFS - Huhmar et al.
"Our findings suggest that deficiency of vasopressin secretion is a fundamental measurable part of the disease mechanisms, which may underlie a number of symptoms in ME/CFS, including the common complaint of orthostatic intolerance."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population - Gladwell et al.
The authors conducted interviews with 13 ME/CFS patients on the validity of the Chalder Fatigue Scale and conclude that the questionnaire "provides limited information about experiences of ME/CFS". Five items were identified by participants as lacking clarity, relating to behaviour not symptoms, or relating to sleepiness not fatigue.
Article | Thread
Frontiers in Endocrinology
Research progress in the treatment of chronic fatigue syndrome through interventions targeting the hypothalamus-pituitary-adrenal axis - Zhang & Wang
This review concludes that: "Despite some controversy, the current mainstream research evidence indicates that CFS patients have mild hypocortisolism, weakened daily variation in cortisol, a weakened response to the HPA axis, and an increase in negative feedback of the HPA axis."
Article | Thread
Exploration of Medicine
The influence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) family history on patients with ME/CFS - Jason & Ngonmedje
"Family histories of ME/CFS were significantly higher (18%) among the ME/CFS group than the non-ME/CFS controls (3.9%). In addition, patients with ME/CFS who had family histories of ME/CFS were more likely to have gastrointestinal symptoms than those with ME/ CFS without those family histories."
Article | Thread
Archive (preprint)
System and Method to Determine ME/CFS and Long COVID Disease Severity Using a Wearable Sensor - Sun et al.
The authors have created a single wearable sensor that measures how much participants are upright with their feet on the ground. This objective parameter, which they call UpTime could differentiate ME/CFS and Long Covid patients from healthy controls.
Article | Thread
Long Covid research
Nature Immunology
Large-scale phenotyping of patients with long COVID post-hospitalization reveals mechanistic subtypes of disease — Liew et al.
"we found markers of myeloid inflammation and complement activation in our large prospective posthospital cohort of patients with LC, in addition to distinct inflammatory patterns in patients with cognitive impairment or gastrointestinal symptoms. These findings show the need to consider subphenotypes in managing patients with LC"
Article | Thread
Preprint: BioRxiv
Cardiovascular symptoms of PASC are associated with trace-level cytokines that affect the function of human pluripotent stem cell derived cardiomyocytes — Jane Sinclair et al.
"Here, we observed a clear effect of cytokines in the femtogram range, suggesting that the trace-level cytokines in PASC-CVS individuals have physiological consequences."
Article | Thread
The American Journal of Medicine
Exploring Cognitive Dysfunction in Long COVID Patients: Eye Movement Abnormalities and Frontal-Subcortical Circuits Implications via Eye-Tracking and Machine Learning — Julián Benito-León et al.
"Our findings suggest impairments in frontal subcortical circuits in long COVID patients experiencing subjective cognitive complaints. Eye-tracking, combined with machine learning, offers a novel, efficient way to assess and monitor long COVID patients' cognitive dysfunctions, suggesting its utility in clinical settings for early detection and personalized treatment strategies."
Article | Thread
ANNALS of the New York Academy of Sciences Long COVID and post-acute sequelae of SARS-CoV-2 pathogenesis and treatment: A Keystone Symposia report - Durstenfeld et al
"In 2023, the Keystone Symposia held the first international scientific conference convening research leaders investigating the pathology of post-acute sequelae of COVID-19 (PASC) or Long COVID, a growing and urgent public health priority.
In this report, we present insights from the talks and workshops presented during this meeting and highlight key themes regarding what researchers have discovered regarding the underlying biology of PASC and directions toward future treatment."
Report l Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 15th April 2024
News, advocacy and media
Trial by Error by David Tuller
Senator Bernie Sanders' $10 Billion Long Covid "Moonshot" Proposal
On the work to ensure that ME/CFS and patients who got sick with ME/CFS before the pandemic, will be included in the research program of Bernie Sanders' Long Covid Moonshot proposal. Includes a letter to Sanders from Todd Davenport urging the inclusion of people with ME/CFS and other infection-associated chronic conditions in the legislation for Long Covid funding.
Article l Thread
An Interview with the Authors of the European ME Alliance Survey of 11.000+ Patients
David Tuller interviews the authors behind the recent EMEA report "Same disease different approaches and experiences" which is based on a survey of ME/CFS patients in Europe. The authors are Arild Angelsen, a board member of the Norwegian ME Association and a professor at the School of Economics and Business at Norwegian University of Life Sciences, and Trude Schei, assistant secretary general of the Norwegian ME Association.
Interview l Thread
Guardian Columnist George Monbiot Discusses His Scathing Critique of the "Biopsychosocial" Approach to ME/CFS and Long Covid
Excellent conversation between Tuller and the investigative journalist and political activist George Monbiot diving into several serious aspects with the so-called "biopsychosocial" approach including the role of the Science Media Centre.
Interview l Thread
The Times Parents accused of faking their children's long Covid
"Medical ignorance is leading to parents of children with long Covid being reported to social services in an echo of the way professionals dismissed ME, doctors warn".
Thread with article
Podcast ME/CFS: What's in a name? (A lot, actually)
A very well researched podcast episode on ME from This Podcast Will Kill You. "In this episode, we dig into what we know and what we hypothesize about the biological underpinnings of ME/CFS before tracing the twisty history of this disease, as popular perception switched back and forth and back again from “real” to “imagined” disease."
Podcast l Thread
Medscape 4 Years In, a Sobering Look at Long COVID Progress
On the slow progress for scientific progress for Long Covid. Researcher Al-Aly expresses concern about the chronic nature of Long Covid and says the NIH needs to get its act together and to do more.
Article l Thread
Cochrane have sent a brief response to the latest Science for ME committee letter in which we presented the petition and explained why the 2019 review, Exercise therapy for CFS, should be withdrawn on the grounds of harms.
"We will include the additional points and references to studies in our review of the issues raised by S4ME in previous correspondence... some of the questions will be addressed on the Cochrane project website."
There have been no monthly updates on the new review since December 2023.
S4ME letter | Cochrane reply | Petition | Thread
.............
Research news and commentary
Australia NCNED at Griffith University secures $438,000 grant
The grant was awarded by ME Research UK and will track brain changes through ME/CFS using a 7 Tesla MRI. It is anticipated to detect subtle brain changes not evident with currently available clinical imaging.
Announcement | Thread
European Research Council
Professor Ruth Ley has received an Advanced Grant from the European Research Council. This funding will enable Ley and her team to investigate how flagellins produced by beneficial gut bacteria interact with the human immune system. Silent flagellin is linked to chronic inflammatory diseases, including myalgic encephalomyelitis (ME).
Article | Thread
JMIR Research Protocols
Personalized Management of Fatigue in Individuals With ME/CFS and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach - Dorronzoro-Zubiete et al.
This is the study protocol for the MyFatigue project which aims address fatigue in ME/CFS and long COVID through the development of digital mobile health solutions for self-management and predict perceived fatigue severity using real-time data.
Article | Thread
Prusty Lab
Prusty Lab, the laboratorium and team of ME/CFS researcher Bhupesh Prusty has a new website. Prusty is currently Professor of Science at Rīga Stradiņš University in Latvia.
Website | Thread
.............
Coming events
USA NIH ME/CFS symposium
Thursday, May 2, 2024, 9:00:00 AM, Eastern Time, Washington DC Local
Author: Dr. Brian Walitt. Runtime: 7 hours
The purpose of the conference is to present findings from the study and the article "Deep phenotyping of post-infectious ME/CFS" to the ME/CFS community. The event is timed to coincide with publication of the article in Nature magazine.
You will be able to view this event at https://videocast.nih.gov/ on the day of the event.
Details | 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. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."
1. Clinical Trial Design in People with ME/CFS, 4th June 2024
Details | Thread
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
...........
Research
ME/CFS and related research
Public Health Reviews
An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond) - Staub et al.
This article summarises the literature on post-viral symptoms during past pandemics and supplements and illustrates it with Swiss examples from the pandemics of 1890, 1918–1920 and later.
Article | Thread
The Qualitative Report
Exploring the Experience of Healthcare-Related Epistemic Injustice among People with ME/CFS - Hunt et al.
Interviews were conducted with 5 people with ME/CFS in the UK regarding healthcare-related epistemic injustice.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
Neuroinflammation in post-acute sequelae of COVID-19 (PASC) as assessed by [11C]PBR28 PET correlates with vascular disease measures — VanElzakker et al.
"We used [11C]PBR28 PET neuroimaging, a marker of neuroinflammation, to compare 12 PASC individuals versus 43 normative healthy controls. We found significantly increased neuroinflammation in PASC versus controls across a wide swath of brain regions"
Article | Thread
Nature Scientific Reports
Recovery of neurophysiological measures in post-COVID fatigue: a 12-month longitudinal follow-up study — Maffitt et al.
"as the pCF cohort recovered from the symptoms of fatigue, their twitch tension rise times became faster than controls. This suggests that the improvement over time in muscle fatigability (corresponding to an improved ability of muscle to generate force with continued contraction) might be due partly to a process of adaptation rather than a complete return to baseline physiology."
Article | Thread
Journal of Inflammation Research
Long COVID-19 and Peripheral Serotonin: A Commentary and Reconsideration — George M Anderson et al.
"the role (or roles) of 5-HT in acute and long COVID remains very much an open question. Wong et al hypothesize that problems arise from too little peripheral 5-HT. However, given the frequent presence of a hyperaggregation state in long COVID, and the known augmenting effects of platelet 5-HT on platelet aggregation, it is also plausible to suggest that reductions in platelet 5-HT could be beneficial."
Article | Thread
Gastroenterology
Clearance of gut mucosal SARS-CoV-2 antigens and post-acute COVID-19 after two years in patients with inflammatory bowel disease — Andreas Zollner et al.
"The window of gut mucosal antigen clearance (months to years) suggests that stem cells in the gut or bone marrow are affected, because most gut-resident immune cells exhibit a half-life of days to weeks. As such, our study indicates that viral antigen clearance is associated with resolution of symptoms and serum serotonin restoration in post-acute COVID-19."
Article | Thread
Pharmacological Research
SARS-CoV-2 Mitochondrial Metabolic and Epigenomic Reprogramming in COVID-19 — Guarnieri et al.
"To determine the effects of SARS-CoV-2 infection on cellular metabolism, we conducted an exhaustive survey of the cellular metabolic pathways modulated by SARS-CoV-2 infection"
Article | Thread
BMC Medicine
What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography — Greenhalgh et al.
"The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition."
Article | Thread
PNAS Nexus
Host–microbiome associations in saliva predict COVID-19 severity — Alqedari et al.
"While this study offers preliminary biomarker results, it is important to consider that the salivary microbiome is only one of many factors that could influence the course of COVID-19"
Article | Thread
Nature Communications
Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection — Phetsouphanh et al.
"This study investigates the humoral and cellular immune responses and health-related quality of life measures in individuals with mild to moderate long COVID (LC) compared to age and gender matched recovered COVID-19 controls (MC) over 24 months."
Article | Thread
Neurology Neuroimmunology & Neuroinflammation
Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19 — McAlpine et al.
"Here, we present preliminary evidence that after COVID-19, SFN is responsive to treatment with IVIG and linked with neurovascular dysregulation and dysautonomia on [invasive cardiopulmonary exercise testing]. "
Article | Thread
Annual Review of Virology
The Spectrum Of Postacute Sequelae Of Covid-19 In Children: From MIS-C To Long Covid — Abigail S. Kane et al.
"Shared pathophysiologic mechanisms suggest long covid is a more indolent version of MIS-C"
Article | Thread
Preprint: BioRxiv
Antibody-mediated cellular responses are dysregulated in Multisystem Inflammatory Syndrome in Children (MIS-C) — Jenna K Dick et al.
"while it is likely that multiple pathogenic mechanisms contribute to MIS-C, our data suggest an imbalance of the antibody-mediated cellular response as a mechanistic correlate of this rare, but life-threatening, outcome of SARS-CoV-2 infection in children."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
Trial by Error by David Tuller
Senator Bernie Sanders' $10 Billion Long Covid "Moonshot" Proposal
On the work to ensure that ME/CFS and patients who got sick with ME/CFS before the pandemic, will be included in the research program of Bernie Sanders' Long Covid Moonshot proposal. Includes a letter to Sanders from Todd Davenport urging the inclusion of people with ME/CFS and other infection-associated chronic conditions in the legislation for Long Covid funding.
Article l Thread
An Interview with the Authors of the European ME Alliance Survey of 11.000+ Patients
David Tuller interviews the authors behind the recent EMEA report "Same disease different approaches and experiences" which is based on a survey of ME/CFS patients in Europe. The authors are Arild Angelsen, a board member of the Norwegian ME Association and a professor at the School of Economics and Business at Norwegian University of Life Sciences, and Trude Schei, assistant secretary general of the Norwegian ME Association.
Interview l Thread
Guardian Columnist George Monbiot Discusses His Scathing Critique of the "Biopsychosocial" Approach to ME/CFS and Long Covid
Excellent conversation between Tuller and the investigative journalist and political activist George Monbiot diving into several serious aspects with the so-called "biopsychosocial" approach including the role of the Science Media Centre.
Interview l Thread
The Times Parents accused of faking their children's long Covid
"Medical ignorance is leading to parents of children with long Covid being reported to social services in an echo of the way professionals dismissed ME, doctors warn".
Thread with article
Podcast ME/CFS: What's in a name? (A lot, actually)
A very well researched podcast episode on ME from This Podcast Will Kill You. "In this episode, we dig into what we know and what we hypothesize about the biological underpinnings of ME/CFS before tracing the twisty history of this disease, as popular perception switched back and forth and back again from “real” to “imagined” disease."
Podcast l Thread
Medscape 4 Years In, a Sobering Look at Long COVID Progress
On the slow progress for scientific progress for Long Covid. Researcher Al-Aly expresses concern about the chronic nature of Long Covid and says the NIH needs to get its act together and to do more.
Article l Thread
Cochrane have sent a brief response to the latest Science for ME committee letter in which we presented the petition and explained why the 2019 review, Exercise therapy for CFS, should be withdrawn on the grounds of harms.
"We will include the additional points and references to studies in our review of the issues raised by S4ME in previous correspondence... some of the questions will be addressed on the Cochrane project website."
There have been no monthly updates on the new review since December 2023.
S4ME letter | Cochrane reply | Petition | Thread
.............
Research news and commentary
Australia NCNED at Griffith University secures $438,000 grant
The grant was awarded by ME Research UK and will track brain changes through ME/CFS using a 7 Tesla MRI. It is anticipated to detect subtle brain changes not evident with currently available clinical imaging.
Announcement | Thread
European Research Council
Professor Ruth Ley has received an Advanced Grant from the European Research Council. This funding will enable Ley and her team to investigate how flagellins produced by beneficial gut bacteria interact with the human immune system. Silent flagellin is linked to chronic inflammatory diseases, including myalgic encephalomyelitis (ME).
Article | Thread
JMIR Research Protocols
Personalized Management of Fatigue in Individuals With ME/CFS and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach - Dorronzoro-Zubiete et al.
This is the study protocol for the MyFatigue project which aims address fatigue in ME/CFS and long COVID through the development of digital mobile health solutions for self-management and predict perceived fatigue severity using real-time data.
Article | Thread
Prusty Lab
Prusty Lab, the laboratorium and team of ME/CFS researcher Bhupesh Prusty has a new website. Prusty is currently Professor of Science at Rīga Stradiņš University in Latvia.
Website | Thread
.............
Coming events
USA NIH ME/CFS symposium
Thursday, May 2, 2024, 9:00:00 AM, Eastern Time, Washington DC Local
Author: Dr. Brian Walitt. Runtime: 7 hours
The purpose of the conference is to present findings from the study and the article "Deep phenotyping of post-infectious ME/CFS" to the ME/CFS community. The event is timed to coincide with publication of the article in Nature magazine.
You will be able to view this event at https://videocast.nih.gov/ on the day of the event.
Details | 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. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need."
1. Clinical Trial Design in People with ME/CFS, 4th June 2024
Details | Thread
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
...........
Research
ME/CFS and related research
Public Health Reviews
An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond) - Staub et al.
This article summarises the literature on post-viral symptoms during past pandemics and supplements and illustrates it with Swiss examples from the pandemics of 1890, 1918–1920 and later.
Article | Thread
The Qualitative Report
Exploring the Experience of Healthcare-Related Epistemic Injustice among People with ME/CFS - Hunt et al.
Interviews were conducted with 5 people with ME/CFS in the UK regarding healthcare-related epistemic injustice.
Article | Thread
Long Covid research
Brain, Behavior, and Immunity
Neuroinflammation in post-acute sequelae of COVID-19 (PASC) as assessed by [11C]PBR28 PET correlates with vascular disease measures — VanElzakker et al.
"We used [11C]PBR28 PET neuroimaging, a marker of neuroinflammation, to compare 12 PASC individuals versus 43 normative healthy controls. We found significantly increased neuroinflammation in PASC versus controls across a wide swath of brain regions"
Article | Thread
Nature Scientific Reports
Recovery of neurophysiological measures in post-COVID fatigue: a 12-month longitudinal follow-up study — Maffitt et al.
"as the pCF cohort recovered from the symptoms of fatigue, their twitch tension rise times became faster than controls. This suggests that the improvement over time in muscle fatigability (corresponding to an improved ability of muscle to generate force with continued contraction) might be due partly to a process of adaptation rather than a complete return to baseline physiology."
Article | Thread
Journal of Inflammation Research
Long COVID-19 and Peripheral Serotonin: A Commentary and Reconsideration — George M Anderson et al.
"the role (or roles) of 5-HT in acute and long COVID remains very much an open question. Wong et al hypothesize that problems arise from too little peripheral 5-HT. However, given the frequent presence of a hyperaggregation state in long COVID, and the known augmenting effects of platelet 5-HT on platelet aggregation, it is also plausible to suggest that reductions in platelet 5-HT could be beneficial."
Article | Thread
Gastroenterology
Clearance of gut mucosal SARS-CoV-2 antigens and post-acute COVID-19 after two years in patients with inflammatory bowel disease — Andreas Zollner et al.
"The window of gut mucosal antigen clearance (months to years) suggests that stem cells in the gut or bone marrow are affected, because most gut-resident immune cells exhibit a half-life of days to weeks. As such, our study indicates that viral antigen clearance is associated with resolution of symptoms and serum serotonin restoration in post-acute COVID-19."
Article | Thread
Pharmacological Research
SARS-CoV-2 Mitochondrial Metabolic and Epigenomic Reprogramming in COVID-19 — Guarnieri et al.
"To determine the effects of SARS-CoV-2 infection on cellular metabolism, we conducted an exhaustive survey of the cellular metabolic pathways modulated by SARS-CoV-2 infection"
Article | Thread
BMC Medicine
What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography — Greenhalgh et al.
"The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition."
Article | Thread
PNAS Nexus
Host–microbiome associations in saliva predict COVID-19 severity — Alqedari et al.
"While this study offers preliminary biomarker results, it is important to consider that the salivary microbiome is only one of many factors that could influence the course of COVID-19"
Article | Thread
Nature Communications
Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection — Phetsouphanh et al.
"This study investigates the humoral and cellular immune responses and health-related quality of life measures in individuals with mild to moderate long COVID (LC) compared to age and gender matched recovered COVID-19 controls (MC) over 24 months."
Article | Thread
Neurology Neuroimmunology & Neuroinflammation
Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19 — McAlpine et al.
"Here, we present preliminary evidence that after COVID-19, SFN is responsive to treatment with IVIG and linked with neurovascular dysregulation and dysautonomia on [invasive cardiopulmonary exercise testing]. "
Article | Thread
Annual Review of Virology
The Spectrum Of Postacute Sequelae Of Covid-19 In Children: From MIS-C To Long Covid — Abigail S. Kane et al.
"Shared pathophysiologic mechanisms suggest long covid is a more indolent version of MIS-C"
Article | Thread
Preprint: BioRxiv
Antibody-mediated cellular responses are dysregulated in Multisystem Inflammatory Syndrome in Children (MIS-C) — Jenna K Dick et al.
"while it is likely that multiple pathogenic mechanisms contribute to MIS-C, our data suggest an imbalance of the antibody-mediated cellular response as a mechanistic correlate of this rare, but life-threatening, outcome of SARS-CoV-2 infection in children."
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 22nd April 2024
News, advocacy and articles
BMJ Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis - Naomi Harvey
In a rapid response to a letter "We need better care for long covid and ME/CFS", Harvey lists actions clinicians can take to improve medical care for people with ME/CFS, particularly in hospital settings.
Article | Thread
Hungary
The governmental healthcare website Egészségvonal has updated its informational page on ME/CFS (written by the National Public Health Centre) after forum member Wyva sent them a letter pointing out in detail how much it differs from the current literature.
Article | Thread
Royal Australian College of General Practitioners ME/CFS Guideline Updated
Recommends incremental physical activity, as a replacement in name for Graded Exercise Therapy.
Guideline | Thread
Emerge Australia
Responds with a statement of concern.
Response | Thread
David Tuller Australian GP Group Recommends "Incremental Physical Activity" for "CFS/ME" Patients.
Tuller calls this rebranding wilfully stupid and harmful to patients.
Article l Thread
Trial by Error by David Tuller
Guardian Columnist George Monbiot Discusses His Scathing Rebuke of the Biopsychosocial Brigades - Text Version
A transcript of the superb interview from last week with George Monbiot.
Article l Thread
Crowdfunding for David Tuller
David Tuller informs in a newsletter that a new crowdfunding will start at May 1st. This will secure the continuation of his important work.
"I'm looking forward to continuing the project for another year. After that, we'll see-it might be time to call it a day. But these issues are not going away, so there is still much work to be done."
Thread
Podcast TLC Sessions - Living with Long Covid
Episode 73: Dr Rob Wüst - Post-exertional Malaise (P.E.M)
(from March). "In this week’s episode Wüst talks us through the key findings of their study, including the muscular changes, mitochondrial dysfunction and microclots that were present in the Long Covid patients compared to their control group."
Podcast l Thread
Episode 74: Nancy Klimas M.D. Neuroimmunology
Interview with Nancy Klimas on her work on ME/CFS, Gulf War Syndrome and Long Covid, on disease mechanisms and treatment approaches.
Podcast l Thread
The Hill Sanders's long COVID funding bill misses the opportunity to aid a similar chronic condition
Opinion piece by Maureen Hanson and Hillary Johnson on the importance of including "pre-pandemic Myalgic Encephalomyelitis" in Bernie Sanders' call for $10 billion research grants for long COVID.
Article l Thread
.............
Research news
USA - NIH RECOVER makes long COVID data easier to access
"Deidentified data from thousands of adults with long COVID are now available to researchers. Secure data from more than 14,000 adults who participate in National Institutes of Health observational research on long COVID are now available to authorized researchers through BioData Catalyst."
Press release | Thread
USA NIH Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop
Published report on the June 2023 workshop "to explore opportunities to advance research and treatment of infection-associated chronic illnesses" held by the National Academies of Sciences, Engineering and Medicine is now available.
Report | Thread
USA Scripps Research San Diego Wearables study open.
"We aim to see whether wearable devices improve Long COVID symptom management." Eligibilty includes USA resident aged over 18 with Long Covid, ME/CFS and/or POTS.
Details | Thread
............
Coming events
UK Parliament Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30
Action for ME reports that Sajid Javid, MP is their new parliamentary champion and will be leading this debate. They have provided a template letter for people to send to their MP to encourage them to attend.
Article | Thread
USA NIH ME/CFS symposium
Thursday, May 2, 2024, 9:00:00 AM, Eastern Time, Washington DC Local
Author: Dr. Brian Walitt. Runtime: 7 hours
The purpose of the conference is to present findings from the study and the article "Deep phenotyping of post-infectious ME/CFS" to the ME/CFS community. The event is timed to coincide with publication of the article in Nature magazine.
You will be able to view this event at https://videocast.nih.gov/ on the day of the event.
Details | Thread
UniteToFight
UniteToFight is organizing an online ME/CFS and Long Covid conference on 15-16 May. UniteToFight was inspired by the loss of Dutch ME/CFS patient Lauren who passed away earlier this year.
Website | Thread
UK BACME virtual clinical professional conference “Delivering NICEly ME/CFS” Thursday 16th May 2024, 9:00 am to 5:00 pm via Zoom. £75.00 – £95.00
Booking | Thread
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
................
Research
ME/CFS research
University of Bergen, Norway
PhD thesis - ME/CFS: Clinical trials, medical treatment and pathomechanisms
- Ingrid Gurvin Rekeland
"In this project, we aimed to assess the therapeutic potential and possible side effects of rituximab and cyclophosphamide in two clinical trials... The effect of an immunomodulatory drug on symptoms supports the underlying hypothesis that in a subgroup of patients the immune system is involved in the pathomechanisms of ME/CFS." The thesis also reports on a study of outcome measures for use in future clinical trials.
Thesis | Thread
PeerJ Computer Science
Development of an expert system for the classification of myalgic encephalomyelitis/chronic fatigue syndrome - Yagin et al.
Metabolomic data from blood samples from 19 controls and 32 ME/CFS patients were used to develop a machine-learning model to classify patients and controls. The dataset contained 832 metabolites, and after feature selection, the model was developed using only 50 metabolites.
Article | Thread
Long Covid research
The Lancet Infectious Diseases
The persistence of SARS-CoV-2 in tissues and its association with long COVID symptoms: a cross-sectional cohort study in China — Wenting Zuo et al.
"we have observed the presence of viral nucleic acid in solid tissue samples from various organs, including the lung, liver, kidney, stomach, intestine, brain, breast, thyroid, blood vessels, and skin, in a proportion of patients who had recovered from mild COVID-19" "our research clearly showed an association between long COVID symptoms at 4 months after infection and the persistence of residual SARS-CoV-2 RNA."
Article | Thread
The Lancet Microbe
Blood transcriptomic analyses reveal persistent SARS-CoV-2 RNA and candidate biomarkers in post-COVID-19 condition — Soraya Maria Menezes et al.
"Upon summarising transcriptomic results into biological pathways, we found significantly decreased immunometabolism in individuals with long COVID, which was negatively correlated with the blood viral load"
Article | Thread
Cell Host & Microbe
The gut microbiome associates with phenotypic manifestations of post-acute COVID-19 syndrome — Qi Su et al.
"We developed a fecal-microbiome-based multi-label machine learning model for predicting different symptoms of PACS, of which the high accuracy further reflects the finding that the gut microbiome associates with phenotypic manifestations of PACS."
Article | Thread
Computers in Biology and Medicine
Towards understanding post-COVID-19 condition: A systematic meta-analysis of transcriptomic alterations with sex-specific insights — Rusu et al.
"We report a persistent immune dysregulation in patients with PCC, as well as alterations in DNA methylation and histone expression." "When analysing the 10 top pathways most implicated in PCC in both women and men separately, we discovered that 8 of them were common but displayed divergent regulation—being down-regulated in women and up-regulated in men."
Article | Thread
The University of Aberdeen Research Portal
“A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid — Corina Sas et al.
"We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise."
Article | Thread
Reproductive Sciences
Quantitative Proteomics of COVID-19 Recovered Patients Identifies Long-Term Changes in Sperm Proteins Leading to Cellular Stress in Spermatozoa — Chopra et al.
"Though this is a preliminary study and the number of samples analyzed for differential proteomics is a limitation, alterations in the expression of various proteins and elevated MDA levels clearly portray the presence of oxidative stress in the spermatozoa as a long-term consequence of COVID-19 infection."
Article | Thread
Sports Medicine - Open
Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise: A Best Practice Proposal — Gloeckl et al.
"This proposal differentiates exercise procedures according to the presence of no, mild/moderate or severe PEM in people with long COVID. These recommendations may guide allied healthcare professionals worldwide in initiating and adjusting exercise training programs for people with long COVID, stratified according to the presence and severity of PEM"
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and articles
BMJ Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis - Naomi Harvey
In a rapid response to a letter "We need better care for long covid and ME/CFS", Harvey lists actions clinicians can take to improve medical care for people with ME/CFS, particularly in hospital settings.
Article | Thread
Hungary
The governmental healthcare website Egészségvonal has updated its informational page on ME/CFS (written by the National Public Health Centre) after forum member Wyva sent them a letter pointing out in detail how much it differs from the current literature.
Article | Thread
Royal Australian College of General Practitioners ME/CFS Guideline Updated
Recommends incremental physical activity, as a replacement in name for Graded Exercise Therapy.
Guideline | Thread
Emerge Australia
Responds with a statement of concern.
Response | Thread
David Tuller Australian GP Group Recommends "Incremental Physical Activity" for "CFS/ME" Patients.
Tuller calls this rebranding wilfully stupid and harmful to patients.
Article l Thread
Trial by Error by David Tuller
Guardian Columnist George Monbiot Discusses His Scathing Rebuke of the Biopsychosocial Brigades - Text Version
A transcript of the superb interview from last week with George Monbiot.
Article l Thread
Crowdfunding for David Tuller
David Tuller informs in a newsletter that a new crowdfunding will start at May 1st. This will secure the continuation of his important work.
"I'm looking forward to continuing the project for another year. After that, we'll see-it might be time to call it a day. But these issues are not going away, so there is still much work to be done."
Thread
Podcast TLC Sessions - Living with Long Covid
Episode 73: Dr Rob Wüst - Post-exertional Malaise (P.E.M)
(from March). "In this week’s episode Wüst talks us through the key findings of their study, including the muscular changes, mitochondrial dysfunction and microclots that were present in the Long Covid patients compared to their control group."
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Episode 74: Nancy Klimas M.D. Neuroimmunology
Interview with Nancy Klimas on her work on ME/CFS, Gulf War Syndrome and Long Covid, on disease mechanisms and treatment approaches.
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The Hill Sanders's long COVID funding bill misses the opportunity to aid a similar chronic condition
Opinion piece by Maureen Hanson and Hillary Johnson on the importance of including "pre-pandemic Myalgic Encephalomyelitis" in Bernie Sanders' call for $10 billion research grants for long COVID.
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Research news
USA - NIH RECOVER makes long COVID data easier to access
"Deidentified data from thousands of adults with long COVID are now available to researchers. Secure data from more than 14,000 adults who participate in National Institutes of Health observational research on long COVID are now available to authorized researchers through BioData Catalyst."
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USA NIH Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop
Published report on the June 2023 workshop "to explore opportunities to advance research and treatment of infection-associated chronic illnesses" held by the National Academies of Sciences, Engineering and Medicine is now available.
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USA Scripps Research San Diego Wearables study open.
"We aim to see whether wearable devices improve Long COVID symptom management." Eligibilty includes USA resident aged over 18 with Long Covid, ME/CFS and/or POTS.
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Coming events
UK Parliament Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30
Action for ME reports that Sajid Javid, MP is their new parliamentary champion and will be leading this debate. They have provided a template letter for people to send to their MP to encourage them to attend.
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USA NIH ME/CFS symposium
Thursday, May 2, 2024, 9:00:00 AM, Eastern Time, Washington DC Local
Author: Dr. Brian Walitt. Runtime: 7 hours
The purpose of the conference is to present findings from the study and the article "Deep phenotyping of post-infectious ME/CFS" to the ME/CFS community. The event is timed to coincide with publication of the article in Nature magazine.
You will be able to view this event at https://videocast.nih.gov/ on the day of the event.
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UniteToFight
UniteToFight is organizing an online ME/CFS and Long Covid conference on 15-16 May. UniteToFight was inspired by the loss of Dutch ME/CFS patient Lauren who passed away earlier this year.
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UK BACME virtual clinical professional conference “Delivering NICEly ME/CFS” Thursday 16th May 2024, 9:00 am to 5:00 pm via Zoom. £75.00 – £95.00
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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.
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Research
ME/CFS research
University of Bergen, Norway
PhD thesis - ME/CFS: Clinical trials, medical treatment and pathomechanisms
- Ingrid Gurvin Rekeland
"In this project, we aimed to assess the therapeutic potential and possible side effects of rituximab and cyclophosphamide in two clinical trials... The effect of an immunomodulatory drug on symptoms supports the underlying hypothesis that in a subgroup of patients the immune system is involved in the pathomechanisms of ME/CFS." The thesis also reports on a study of outcome measures for use in future clinical trials.
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PeerJ Computer Science
Development of an expert system for the classification of myalgic encephalomyelitis/chronic fatigue syndrome - Yagin et al.
Metabolomic data from blood samples from 19 controls and 32 ME/CFS patients were used to develop a machine-learning model to classify patients and controls. The dataset contained 832 metabolites, and after feature selection, the model was developed using only 50 metabolites.
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Long Covid research
The Lancet Infectious Diseases
The persistence of SARS-CoV-2 in tissues and its association with long COVID symptoms: a cross-sectional cohort study in China — Wenting Zuo et al.
"we have observed the presence of viral nucleic acid in solid tissue samples from various organs, including the lung, liver, kidney, stomach, intestine, brain, breast, thyroid, blood vessels, and skin, in a proportion of patients who had recovered from mild COVID-19" "our research clearly showed an association between long COVID symptoms at 4 months after infection and the persistence of residual SARS-CoV-2 RNA."
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The Lancet Microbe
Blood transcriptomic analyses reveal persistent SARS-CoV-2 RNA and candidate biomarkers in post-COVID-19 condition — Soraya Maria Menezes et al.
"Upon summarising transcriptomic results into biological pathways, we found significantly decreased immunometabolism in individuals with long COVID, which was negatively correlated with the blood viral load"
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Cell Host & Microbe
The gut microbiome associates with phenotypic manifestations of post-acute COVID-19 syndrome — Qi Su et al.
"We developed a fecal-microbiome-based multi-label machine learning model for predicting different symptoms of PACS, of which the high accuracy further reflects the finding that the gut microbiome associates with phenotypic manifestations of PACS."
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Computers in Biology and Medicine
Towards understanding post-COVID-19 condition: A systematic meta-analysis of transcriptomic alterations with sex-specific insights — Rusu et al.
"We report a persistent immune dysregulation in patients with PCC, as well as alterations in DNA methylation and histone expression." "When analysing the 10 top pathways most implicated in PCC in both women and men separately, we discovered that 8 of them were common but displayed divergent regulation—being down-regulated in women and up-regulated in men."
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The University of Aberdeen Research Portal
“A Switch Went off in My Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid — Corina Sas et al.
"We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise."
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Reproductive Sciences
Quantitative Proteomics of COVID-19 Recovered Patients Identifies Long-Term Changes in Sperm Proteins Leading to Cellular Stress in Spermatozoa — Chopra et al.
"Though this is a preliminary study and the number of samples analyzed for differential proteomics is a limitation, alterations in the expression of various proteins and elevated MDA levels clearly portray the presence of oxidative stress in the spermatozoa as a long-term consequence of COVID-19 infection."
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Sports Medicine - Open
Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise: A Best Practice Proposal — Gloeckl et al.
"This proposal differentiates exercise procedures according to the presence of no, mild/moderate or severe PEM in people with long COVID. These recommendations may guide allied healthcare professionals worldwide in initiating and adjusting exercise training programs for people with long COVID, stratified according to the presence and severity of PEM"
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