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News in Brief - September 2024
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Week beginning 1st September 2024
News, advocacy and articles
BMJ Evidence-Based Nursing - Building an NHS that truly supports people living with long COVID and ME: government action needed now, Twycross A, Hughes B, Hargrove K.
Excellent editorial presenting a policy brief which is part of the #ThereForME campaign which is calling for an NHS that is there for people with Long Covid and ME.
Editorial l Thread
Teach ME Treat ME This campaign from #MillionsMissing to educate clinicians and medical students about ME has achieved several milestones in US and UK and is still ongoing. Learn more and how to get involved by following the link.
More information l Thread
The ME Association has awarded Kristian Sommerfelt, Trude Schei and Arild Angelsen the Howes Goudsmit Award for their research study "Severe and Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care".
Article l Thread
USA Stanford ME/CFS Collaborative Research Center held a closed Zoom researchers working group meeting 3-6 September with scientists and clinicians from around the world.
Tweet | Thread
Catastrophizing, time to ditch the term?
In a new blog post, ME/CFS Skeptic looks at the evidence behind 'catastrophizing', a cognitive distortion that amplifies the perceived threat of symptoms that has been at the center of cognitive-behavioral models of pain and fatigue.
Article | Thread
UK Action for ME has withdrawn a problematic Care and Support Plan Template from the Bristol Clinic in response to criticism from people with ME/CFS, including a detailed complaint from some S4ME members (see last week's news). In her published response, Chief Executive Sonya Chowdhury agreed with criticisms, and said "As part of our resources review, we will look at how we meaningfully consult on, test and gather feedback on new/revised resources, to ensure this process is fit for purpose and engages with a cross-section of the ME community."
The Canary An ME/CFS charity has just shamed itself again. So why do people still support it?
Hannah Sharland reports on this story and related issues with AfME and BACME.
AfME response | Canary article | Thread
USA The Santa Clara County Health and Hospital Committee has held a hearing on long COVID and ME/CFS with panelists including Bela Chheda, John Chia, Melanie Hoppers, Supriya Narasimhana and Angela Suarez.
YouTube l Thread
..............
In memory
Sammy Lincroft, founder and writer of the blog "ME and more", cofounder of @mutualaidforme and from the instagram account @m.e_and_more has died at only 25 years old in Melbourne, Australia. A virtual memorial and celebration of her life will be taking place.
Thread (members only)
...............
Coming events
USA The RECOVER initiative
"Two RECOVER study sites – ILLInet RECOVER and RECOVER Boston – collaborate with community-based organizations on Long COVID summit to improve understanding and treatment of the condition."
September 12th, 2024
Article | Agenda | Register | Thread
UK Action for ME AGM
"You are invited to our 2024 Annual General Meeting (AGM) where you can hear about how we’ve worked with and supported people in the last financial year. Please join us from 2pm on Friday 13 September, online via Zoom. All are welcome, and registration is free". Questions can be submitted in advance.
AfME with links | Thread
UK ME/CFS biobank September 19th, join the CureME team at LSHTM from 5 PM to 8 PM for a research exchange. We invite ME/CFS patients and researchers to share insights and connect!
Registration | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Registration | Thread
Bateman Horne Center and Solve ME
Webinar series: Severe ME/CFS: Care, Rights, and Research
Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).
Registration is now open.
October 9: Caregiving; November 13: Legal rights;
December 4: Medical care; January 15: Research
Details | Thread
..............
Research
ME/CFS research
International Journal of Molecular Sciences
Identifying microRNAs Possibly Implicated in [ME/CFS] and Fibromyalgia: A Review - Tsamou et al
"Dysregulated miRNAs in ME/CFS and FM may serve as promising biomarkers for these diseases."
Article | Thread
Uppsala University Doctoral thesis
Exploring the role of tryptophan metabolites [ME/CFS]: Development and application of high resolution mass spectrometry methods - Abujrais, Sandy
Thesis | Thread | Thread on published research
Research Square
Stroop and practice effects in cognitive dysfunction of Long COVID and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - Braniuk et al.
Using the Stroop task, the authors found that ME/CFS and Long Covid patients have global slowing of response times that cannot be overcome by practice suggesting slower neurotransmission or white matter conduction between network nodes during problem solving.
Article | Thread
Long Covid research
Lancet: eClinicalMedicine
Characteristics and predictors of Long Covid in children: a 3-year prospective cohort study — Anna Camporesi et al.
"This is the longest follow-up study of children with SARS-CoV-2 infection, showing a significant and long-lasting burden of Long Covid in the pediatric population." "In line with our previous study and others, the most commonly persisting symptoms identified were fatigue, post-exertional dyspnea, headache, and gastrointestinal symptoms."
Article | Thread
Nature
An aberrant immune–epithelial progenitor niche drives viral lung sequelae — Narasimhan et al.
Studying pulmonary fibroproliferative disease. "we found a central role for lung-resident CD8+ T cell–macrophage interactions in impairing alveolar regeneration and driving fibrotic sequelae after acute viral pneumonia. Specifically, IFNγ and TNF derived from CD8+ T cells stimulated local macrophages to chronically release IL-1β"
Article | Thread
European Archives of Psychiatry and Clinical Neuroscience
Long COVID patients’ brain activation is suppressed during walking and severer symptoms lead to stronger suppression — Chen et al.
"Our study supports and strengthens previous conclusions by demonstrating that patients with Long COVID who initially experienced mild symptoms showed greater activation in specific brain regions, including bilateral M1, bilateral S1, left FPA, and right DLPFC, compared to those who initially had moderate symptoms."
Article | Thread
Alzheimer's & Dementia
Parallel electrophysiological abnormalities due to COVID-19 infection and to Alzheimer's disease and related dementia — Yang Jiang et al.
"some individuals with COVID-19 display abnormal intrinsic brain activity and cognitive impairments that resemble those seen in neurodegenerative diseases, particularly ADRD. The evidence presented indicates that COVID-19 and ADRD pathologies share common impacts on synaptic and neurovascular dysfunctions involving astrocyte reactivity and neuroinflammation."
Article | Thread
GeroScience
Resting-state neural dynamics changes in older adults with post-COVID syndrome and the modulatory effect of cognitive training and sex — Nagy et al.
"Our results suggest that in older adults with post-COVID syndrome, there is a pronounced shift from more global to local neural processing, potentially contributing to accelerated neural aging in this condition"
Article | Thread
Nature Scientific Reports
Association of physical symptoms with accelerometer-measured movement behaviors and functional capacity in individuals with Long COVID — Rosa-Souza et al.
"individuals who reported post-exercise malaise demonstrated ~ 3000 fewer steps per day and ~ 41 fewer minutes per week in [moderate to vigorous physical activity]." "the observation that light physical activity levels were comparable between participants with and without this symptom implies that individuals can reduce their MVPA as a protective action against the onset of post-exercise malaise."
Article | Thread
International Journal of Molecular Sciences
Novel Clinical, Immunological, and Metabolic Features Associated with Persistent Post-Acute COVID-19 Syndrome — Santana-de Anda et al.
"The main findings of our study are that higher serum levels of pyruvate and lower serum levels of alpha tocopherol at the time of SARS-CoV-2 acute infection are risk factors for PACS development at 7 months and and beyond."
Article | Thread
Open Forum Infectious Diseases
Association of COVID-19 Vaccination with Risk of Medically-Attended Post-Acute Sequelae of COVID-19 During the Ancestral, Alpha, Delta, and Omicron Variant Eras — Swift et al.
"During the observation period, 6.9% of patients experienced medically-attended and diagnosed PASC. A diagnosis of PASC was associated with older age, female sex, hospitalization for the initial infection, and an increased severity-weighted comorbidity index, and was inversely associated with infection during the Omicron period."
Article | Thread
American Journal of Public Health
Long COVID Among People With Preexisting Disabilities — Jean P. Hall et al.
"The prevalence of long COVID was higher among people with preexisting disabilities than in the general population (40.6% vs 18.9%)."
Article | Thread
Pituitary
Long COVID and pituitary dysfunctions: a bidirectional relationship? — di Filippo et al.
"on the basis of the data available in literature, a bidirectional pathophysiological relationship between pituitary dysfunctions and Long COVID may be currently only hypothesized."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, advocacy and articles
BMJ Evidence-Based Nursing - Building an NHS that truly supports people living with long COVID and ME: government action needed now, Twycross A, Hughes B, Hargrove K.
Excellent editorial presenting a policy brief which is part of the #ThereForME campaign which is calling for an NHS that is there for people with Long Covid and ME.
Editorial l Thread
Teach ME Treat ME This campaign from #MillionsMissing to educate clinicians and medical students about ME has achieved several milestones in US and UK and is still ongoing. Learn more and how to get involved by following the link.
More information l Thread
The ME Association has awarded Kristian Sommerfelt, Trude Schei and Arild Angelsen the Howes Goudsmit Award for their research study "Severe and Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care".
Article l Thread
USA Stanford ME/CFS Collaborative Research Center held a closed Zoom researchers working group meeting 3-6 September with scientists and clinicians from around the world.
Tweet | Thread
Catastrophizing, time to ditch the term?
In a new blog post, ME/CFS Skeptic looks at the evidence behind 'catastrophizing', a cognitive distortion that amplifies the perceived threat of symptoms that has been at the center of cognitive-behavioral models of pain and fatigue.
Article | Thread
UK Action for ME has withdrawn a problematic Care and Support Plan Template from the Bristol Clinic in response to criticism from people with ME/CFS, including a detailed complaint from some S4ME members (see last week's news). In her published response, Chief Executive Sonya Chowdhury agreed with criticisms, and said "As part of our resources review, we will look at how we meaningfully consult on, test and gather feedback on new/revised resources, to ensure this process is fit for purpose and engages with a cross-section of the ME community."
The Canary An ME/CFS charity has just shamed itself again. So why do people still support it?
Hannah Sharland reports on this story and related issues with AfME and BACME.
AfME response | Canary article | Thread
USA The Santa Clara County Health and Hospital Committee has held a hearing on long COVID and ME/CFS with panelists including Bela Chheda, John Chia, Melanie Hoppers, Supriya Narasimhana and Angela Suarez.
YouTube l Thread
..............
In memory
Sammy Lincroft, founder and writer of the blog "ME and more", cofounder of @mutualaidforme and from the instagram account @m.e_and_more has died at only 25 years old in Melbourne, Australia. A virtual memorial and celebration of her life will be taking place.
Thread (members only)
...............
Coming events
USA The RECOVER initiative
"Two RECOVER study sites – ILLInet RECOVER and RECOVER Boston – collaborate with community-based organizations on Long COVID summit to improve understanding and treatment of the condition."
September 12th, 2024
Article | Agenda | Register | Thread
UK Action for ME AGM
"You are invited to our 2024 Annual General Meeting (AGM) where you can hear about how we’ve worked with and supported people in the last financial year. Please join us from 2pm on Friday 13 September, online via Zoom. All are welcome, and registration is free". Questions can be submitted in advance.
AfME with links | Thread
UK ME/CFS biobank September 19th, join the CureME team at LSHTM from 5 PM to 8 PM for a research exchange. We invite ME/CFS patients and researchers to share insights and connect!
Registration | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Registration | Thread
Bateman Horne Center and Solve ME
Webinar series: Severe ME/CFS: Care, Rights, and Research
Each webinar takes place from 10-11 am PT (11 am – 12 pm MT).
Registration is now open.
October 9: Caregiving; November 13: Legal rights;
December 4: Medical care; January 15: Research
Details | Thread
..............
Research
ME/CFS research
International Journal of Molecular Sciences
Identifying microRNAs Possibly Implicated in [ME/CFS] and Fibromyalgia: A Review - Tsamou et al
"Dysregulated miRNAs in ME/CFS and FM may serve as promising biomarkers for these diseases."
Article | Thread
Uppsala University Doctoral thesis
Exploring the role of tryptophan metabolites [ME/CFS]: Development and application of high resolution mass spectrometry methods - Abujrais, Sandy
Thesis | Thread | Thread on published research
Research Square
Stroop and practice effects in cognitive dysfunction of Long COVID and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - Braniuk et al.
Using the Stroop task, the authors found that ME/CFS and Long Covid patients have global slowing of response times that cannot be overcome by practice suggesting slower neurotransmission or white matter conduction between network nodes during problem solving.
Article | Thread
Long Covid research
Lancet: eClinicalMedicine
Characteristics and predictors of Long Covid in children: a 3-year prospective cohort study — Anna Camporesi et al.
"This is the longest follow-up study of children with SARS-CoV-2 infection, showing a significant and long-lasting burden of Long Covid in the pediatric population." "In line with our previous study and others, the most commonly persisting symptoms identified were fatigue, post-exertional dyspnea, headache, and gastrointestinal symptoms."
Article | Thread
Nature
An aberrant immune–epithelial progenitor niche drives viral lung sequelae — Narasimhan et al.
Studying pulmonary fibroproliferative disease. "we found a central role for lung-resident CD8+ T cell–macrophage interactions in impairing alveolar regeneration and driving fibrotic sequelae after acute viral pneumonia. Specifically, IFNγ and TNF derived from CD8+ T cells stimulated local macrophages to chronically release IL-1β"
Article | Thread
European Archives of Psychiatry and Clinical Neuroscience
Long COVID patients’ brain activation is suppressed during walking and severer symptoms lead to stronger suppression — Chen et al.
"Our study supports and strengthens previous conclusions by demonstrating that patients with Long COVID who initially experienced mild symptoms showed greater activation in specific brain regions, including bilateral M1, bilateral S1, left FPA, and right DLPFC, compared to those who initially had moderate symptoms."
Article | Thread
Alzheimer's & Dementia
Parallel electrophysiological abnormalities due to COVID-19 infection and to Alzheimer's disease and related dementia — Yang Jiang et al.
"some individuals with COVID-19 display abnormal intrinsic brain activity and cognitive impairments that resemble those seen in neurodegenerative diseases, particularly ADRD. The evidence presented indicates that COVID-19 and ADRD pathologies share common impacts on synaptic and neurovascular dysfunctions involving astrocyte reactivity and neuroinflammation."
Article | Thread
GeroScience
Resting-state neural dynamics changes in older adults with post-COVID syndrome and the modulatory effect of cognitive training and sex — Nagy et al.
"Our results suggest that in older adults with post-COVID syndrome, there is a pronounced shift from more global to local neural processing, potentially contributing to accelerated neural aging in this condition"
Article | Thread
Nature Scientific Reports
Association of physical symptoms with accelerometer-measured movement behaviors and functional capacity in individuals with Long COVID — Rosa-Souza et al.
"individuals who reported post-exercise malaise demonstrated ~ 3000 fewer steps per day and ~ 41 fewer minutes per week in [moderate to vigorous physical activity]." "the observation that light physical activity levels were comparable between participants with and without this symptom implies that individuals can reduce their MVPA as a protective action against the onset of post-exercise malaise."
Article | Thread
International Journal of Molecular Sciences
Novel Clinical, Immunological, and Metabolic Features Associated with Persistent Post-Acute COVID-19 Syndrome — Santana-de Anda et al.
"The main findings of our study are that higher serum levels of pyruvate and lower serum levels of alpha tocopherol at the time of SARS-CoV-2 acute infection are risk factors for PACS development at 7 months and and beyond."
Article | Thread
Open Forum Infectious Diseases
Association of COVID-19 Vaccination with Risk of Medically-Attended Post-Acute Sequelae of COVID-19 During the Ancestral, Alpha, Delta, and Omicron Variant Eras — Swift et al.
"During the observation period, 6.9% of patients experienced medically-attended and diagnosed PASC. A diagnosis of PASC was associated with older age, female sex, hospitalization for the initial infection, and an increased severity-weighted comorbidity index, and was inversely associated with infection during the Omicron period."
Article | Thread
American Journal of Public Health
Long COVID Among People With Preexisting Disabilities — Jean P. Hall et al.
"The prevalence of long COVID was higher among people with preexisting disabilities than in the general population (40.6% vs 18.9%)."
Article | Thread
Pituitary
Long COVID and pituitary dysfunctions: a bidirectional relationship? — di Filippo et al.
"on the basis of the data available in literature, a bidirectional pathophysiological relationship between pituitary dysfunctions and Long COVID may be currently only hypothesized."
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 9th September 2024
News
USA ME/CFS patients needed for a PET/MRI study
Principal Investigator: Micheal VanElzakker, PhD, Massachusetts General Hospital
"Survey, Personal health tracking, Blood draw, Injection or IV, MRI scan, PET scan may be required"
Details | Thread
USA Stanford ME/CFS Collaborative Research Center working group meeting. Two reports on the meeting - an article by patient advocate Rivka Solomon, and a video by researcher Dr Jarred Younger, give a flavour of a busy meeting with interesting speakers and interactions.
Article | Video (12 minutes) | Thread
UK ME/CFS research workshops
"Hundreds of people living with ME/CFS, researchers and clinicians recently came together in a series of online workshops designed to stimulate clinical research in ME/CFS. Action for M.E. is pleased to be able to share support by hosting these workshops and now sharing the recordings"
Article | Videos | Thread
UK Action for ME The AGM due to have taken place this week has been postponed.
Thread
UK ME Association
"The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester, to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services."
The article invites a limited number of participants for final testing of one of the questionnaires developed in this study. Forum members have raised significant concerns about this project, as described in letters to the MEA in April 2024.
MEA article | Thread | Letters
..........
Coming events
See last week's news.
..........
Research
ME/CFS research
Infection
Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome — Haunhorst et al.
"In this review, we describe current evidence indicating that key pathophysiological features of PCC and ME/CFS are involved in physical activity-induced PEM."
Article | Thread
Journal of Psychosomatic Research
Fatigability and stress reactivity in patients with chronic fatigue syndrome versus healthy controls - Bogaerts et al.
A small study using cognitive, stress and physical tests: "patients with CFS experience more physical and mental fatigability and they recover more slowly from physical and mental efforts than HC." and "patients with CFS experience higher stress levels compared to controls during a validated stress task"
Article | Thread
Long Covid research
Preprint: Helyion
Mitochondrial Gene Signatures Illuminate Mitochondrial Function as an Important Contributor to Post-COVID Recovery and Long COVID Progression — Silverstein et al.
"these findings suggest that successful COVID recovery is mediated in part by efficient mitochondrial repair and reduced oxidative stress, while mitochondrial dysfunction and continued dysregulation of mitochondrial gene expression contributes to chronic inflammation and long COVID onset."
Article | Thread
Preprint: MedRxiv
Divergent inflammatory and neurology-related plasma protein profiles in individuals with long COVID following primary and breakthrough SARS-CoV-2 infections. — Amit Bansal et al.
"individuals with long COVID displayed a more complex neuroinflammatory response profile compared to the COVID-19 recovered group."
Article | Thread
Journal of Medical Virology
Antibody responses to common viruses according to COVID-19 severity and postacute sequelae of COVID-19 — Marianna Karachaliou et al.
"PASC was associated with elevated responses against EBV, VZV, and WUPyV even among patients without previous severe COVID‐19. Whether latent pathogens reactivation have a pathogenic role in PASC needs to be ascertained."
Article | Thread
The Lancet Infectious Diseases
Health outcomes 3 months and 6 months after molnupiravir treatment for COVID-19 for people at higher risk in the community (PANORAMIC): a randomised controlled trial — Victoria Harris et al.
"In a vaccinated population, people treated with molnupiravir for acute COVID-19 felt better, experienced fewer and less severe COVID-19 associated symptoms, accessed health care less often, and took less time off work at 6 months. However, the absolute differences in this open-label design are small with high numbers needed to treat."
Article | Thread
Nature npj Digital Medicine
Long-term changes in wearable sensor data in people with and without Long Covid — Radin et al.
"We found that individuals with Long COVID symptoms experience a significantly different trajectory in changes from their pre-infection RHR norms compared to those without Long COVID."
Article | Thread
Frontiers in Neurology
Multimodal neuroimaging in Long-COVID and its correlates with cognition 1.8 years after SARS-CoV-2 infection: a cross-sectional study of the Aliança ProHEpiC-19 Cognitiu — Dacosta-Aguayo et al.
"People with LC exhibit cognitive impairments linked to long-lasting changes in brain structure and function"
Article | Thread
Preprints
How Long is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service — Rochelle Bodey et al.
"As many as 43% of participants with ongoing Long Covid symptoms continue to experience symptoms which may fit with a suspected ME/CFS diagnosis" "Findings in this study add weight to this emerging picture of Persistent LC (PLC) as a long-term condition with clear evidence that even after being treated in a specialist LC service the majority of patients continue to face overwhelming and debilitating symptoms"
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News
USA ME/CFS patients needed for a PET/MRI study
Principal Investigator: Micheal VanElzakker, PhD, Massachusetts General Hospital
"Survey, Personal health tracking, Blood draw, Injection or IV, MRI scan, PET scan may be required"
Details | Thread
USA Stanford ME/CFS Collaborative Research Center working group meeting. Two reports on the meeting - an article by patient advocate Rivka Solomon, and a video by researcher Dr Jarred Younger, give a flavour of a busy meeting with interesting speakers and interactions.
Article | Video (12 minutes) | Thread
UK ME/CFS research workshops
"Hundreds of people living with ME/CFS, researchers and clinicians recently came together in a series of online workshops designed to stimulate clinical research in ME/CFS. Action for M.E. is pleased to be able to share support by hosting these workshops and now sharing the recordings"
Article | Videos | Thread
UK Action for ME The AGM due to have taken place this week has been postponed.
Thread
UK ME Association
"The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester, to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services."
The article invites a limited number of participants for final testing of one of the questionnaires developed in this study. Forum members have raised significant concerns about this project, as described in letters to the MEA in April 2024.
MEA article | Thread | Letters
..........
Coming events
See last week's news.
..........
Research
ME/CFS research
Infection
Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome — Haunhorst et al.
"In this review, we describe current evidence indicating that key pathophysiological features of PCC and ME/CFS are involved in physical activity-induced PEM."
Article | Thread
Journal of Psychosomatic Research
Fatigability and stress reactivity in patients with chronic fatigue syndrome versus healthy controls - Bogaerts et al.
A small study using cognitive, stress and physical tests: "patients with CFS experience more physical and mental fatigability and they recover more slowly from physical and mental efforts than HC." and "patients with CFS experience higher stress levels compared to controls during a validated stress task"
Article | Thread
Long Covid research
Preprint: Helyion
Mitochondrial Gene Signatures Illuminate Mitochondrial Function as an Important Contributor to Post-COVID Recovery and Long COVID Progression — Silverstein et al.
"these findings suggest that successful COVID recovery is mediated in part by efficient mitochondrial repair and reduced oxidative stress, while mitochondrial dysfunction and continued dysregulation of mitochondrial gene expression contributes to chronic inflammation and long COVID onset."
Article | Thread
Preprint: MedRxiv
Divergent inflammatory and neurology-related plasma protein profiles in individuals with long COVID following primary and breakthrough SARS-CoV-2 infections. — Amit Bansal et al.
"individuals with long COVID displayed a more complex neuroinflammatory response profile compared to the COVID-19 recovered group."
Article | Thread
Journal of Medical Virology
Antibody responses to common viruses according to COVID-19 severity and postacute sequelae of COVID-19 — Marianna Karachaliou et al.
"PASC was associated with elevated responses against EBV, VZV, and WUPyV even among patients without previous severe COVID‐19. Whether latent pathogens reactivation have a pathogenic role in PASC needs to be ascertained."
Article | Thread
The Lancet Infectious Diseases
Health outcomes 3 months and 6 months after molnupiravir treatment for COVID-19 for people at higher risk in the community (PANORAMIC): a randomised controlled trial — Victoria Harris et al.
"In a vaccinated population, people treated with molnupiravir for acute COVID-19 felt better, experienced fewer and less severe COVID-19 associated symptoms, accessed health care less often, and took less time off work at 6 months. However, the absolute differences in this open-label design are small with high numbers needed to treat."
Article | Thread
Nature npj Digital Medicine
Long-term changes in wearable sensor data in people with and without Long Covid — Radin et al.
"We found that individuals with Long COVID symptoms experience a significantly different trajectory in changes from their pre-infection RHR norms compared to those without Long COVID."
Article | Thread
Frontiers in Neurology
Multimodal neuroimaging in Long-COVID and its correlates with cognition 1.8 years after SARS-CoV-2 infection: a cross-sectional study of the Aliança ProHEpiC-19 Cognitiu — Dacosta-Aguayo et al.
"People with LC exhibit cognitive impairments linked to long-lasting changes in brain structure and function"
Article | Thread
Preprints
How Long is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service — Rochelle Bodey et al.
"As many as 43% of participants with ongoing Long Covid symptoms continue to experience symptoms which may fit with a suspected ME/CFS diagnosis" "Findings in this study add weight to this emerging picture of Persistent LC (PLC) as a long-term condition with clear evidence that even after being treated in a specialist LC service the majority of patients continue to face overwhelming and debilitating symptoms"
Article | Thread
..........
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 16th September 2024
News, articles and advocacy
USA A group of leading ME researchers have sent an open letter to the NIH Director, Monica Bertagnolli, urging her to include ME/CFS in the RECOVER Initiative on Long Covid. The letter is signed by Ian Lipkin, Anthony Komaroff, Susan Levine, Jose Montoya, Nancy Klimas, Lucinda Bateman, Derya Unutmaz, Daniel L. Peterson and Maureen Hanson.
Tweet with letter l Thread
Sweden
The recent guidelines for Long Covid and similar illnesses (including ME/CFS) is being criticised by many for being outdated and for recommending potentially harmful treatments such as graded exercise therapy. The Swedish Covid Association has written several opinion pieces in the media and sent a thorough, critical report to the National board of Social Affairs and Health about the guidelines. Thomas Lindén from the National Board of Social Affairs and Health has replied in an opinion piece where he says the guidelines can't get more into details for now, and that graded exercise is one of several things to offer against "tiredness".
Report l Opinion piece by Lindén l Thread
Sweden
Season two of the podcast "Maran" by "Eremiten" looks into current and historical events for the outdated treatment approaches for ME and long Covid.
Thread with introduction and links
The biggest 2-day exercise study
ME/CFS Skeptic analyses the largest study on repeated cardiopulmonary exercise testing. While ME/CFS patients decline more on the second test, there is a large overlap with healthy controls and difference do not correlate well with functional disability.
Article | Thread
#ThereForME World Patient Safety Day letter
An open letter to Wes Streeting from over 200 healthcare workers
Letter | Thread
UK The Times: Patients with severe ME at risk of starvation, doctors say
Nearly 200 health professionals have written to the health secretary saying that patients with the illness are being left to ‘languish behind closed doors’. The letter, co-ordinated by the #ThereForME campaign to mark World Patient Safety Day, highlights the lack of NHS provision for severe ME/CFS, leading in some cases to malnutrition and death.
Following the recent inquest into the death of Maeve Boothby O'Neill, "At a hearing next Friday, the coroner will consider whether there should be a prevention of future deaths report."
Article | Thread
BBC Long Covid sufferer's call for better support
An article about the same letter highlights the case of Dr Becky Williams who has been bedbound with Long Covid, now diagnosed as ME, since March 2020. Ms Williams said: “I feel we’ve all been left to rot - which I know sounds dramatic - neglected and not being listened to. This campaign is giving us all a voice, especially for people who are so severe they can’t talk and don’t have their own voice”.
Government spokesmen are quoted as saying they are "committed to improving care and support".
Article | Thread
Trial by Error by David Tuller Norwegian Tabloid Covers Stupid Gulf War Illness/PEM Study; My Letter to Journal Editor on Bogus Claims
About a media article where Professor Wyller spins a study on Gulf War Illness in order to claim patients with CFS can tolerate exercise. Tuller has written a letter to the journal that published the study stating that it "tells us nothing about the potentially harmful impact of exercise on a cohort of GWI patients who actually suffer from PEM".
Article l Thread
UK Action for ME "Everybody has a story" - a talk with Stuart Murdoch
"In a recent InterAction article, we spoke to Scottish singer-songwriter Stuart Murdoch about his journey with ME, which he shares in his new book, Nobody's Empire."
Article | Thread
.............
In memory
Sarah-Jayne Lewis has died. A beautiful tribute has been written: "Her legacy is one of passion, kindness, and unwavering support for others. SJ was a pillar of strength for the M.E. and chronic illness community, founding a Facebook support group to help others navigate their struggles."
Tribute l Thread (members only)
...............
Coming events
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Thread
............
Research
ME/CFS research
International Journal of Molecular Sciences
Manual Therapy Improves Fibromyalgia Symptoms by Downregulating SIK1 - Bonastre-Férez et al.
The Spanish research team of Elisa Oltra tested a manual therapy (MT) pressure-controlled protocol on 38 fibromyalgia patients. The results show that the salt-induced kinase SIK1 gene was consistently downregulated by MT in FM, correlating with improvement of patient symptoms.
Article | Thread
Frontiers in Immunology
Meta-analysis of Natural Killer (NK) cell cytotoxicity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) - Baraniuk et al.
Twenty-eight papers and 55 effector : target cell ratio (E:T) data points were collected. Cytotoxicity in ME/CFS was significantly reduced to about half of healthy control levels. The heterogeneity of studies was high.
Article | Thread
BMC Medical Education
Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study - Anderson et al.
This study investigated the impact of a short immersive VR educational experience on knowledge of ME/CFS and empathy for those living with the condition in 28 medical students and 15 primary care health professionals.
Article | Thread
Ohio State University Thesis
Role for EBV- & HHV-6A-dUTPases on Immune Dysfunction in ME/CFS and other Chronic Multi-Symptom Illnesses - Brandon Cox
"Altogether, the data presented here demonstrates novel immunomodulatory properties of the EBV- and HHV-6-dUTPases and how they can potentially affect immune system function in a subset of people with ME/CFS and other chronic multi-symptom illnesses."
Thesis | Thread
ACS Chemical Neuroscience
Untargeted Metabolomics and Quantitative Analysis of Tryptophan Metabolites in Myalgic Encephalomyelitis Patients and Healthy Volunteers: A Comparative Study Using High-Resolution Mass Spectrometry - Abujrais et al
The study used plasma of 38 ME/CFS patients and 24 healthy controls, and found some differences which the authors conclude "suggest potential alterations in immune system response and oxidative stress in ME/CFS patients."
Article | Thread
Long Covid research
Medicine & Science in Sports & Exercise
COVID-19’s Impact on Athletes: Reduced Cardiorespiratory fitness after a SARS-CoV-2 Infection — Hasler, Erik et al.
"A SARS-CoV-2 infection was associated with a decrease in [Power output at individual anaerobic threshold] (-0.123 W/kg, p < 0.001), [maximal power output] (-0.099 W/kg, p = 0.002), measured V̇O2max/kg (-1.70 ml/min/kg, p = 0.050) and an increase [heart rate at individual anaerobic threshold] (2.50 b/min, p = 0.008), HRmax (2.59 b/min, p < 0.001) within the first 60 days"
Article | Thread
Proceedings of the National Academy of Sciences
SARS-CoV-2-specific CD8+ T cells from people with long COVID establish and maintain effector phenotype and key TCR signatures over 2 years — Rowntree et al.
"We show similarities between SARS-CoV-2-specific CD4 and CD8+ T cells from people with long COVID and non-LC controls, with both groups displaying key TCR signatures and TCRαβ clonotypes that can be detected over 2y following disease onset, suggesting that, at least at the clonotype level, T cell responses are unaffected by long COVID."
Article | Thread
Scandinavian Journal of Immunology
No signs of mast cell involvement in long-COVID: A case–control study — Ole Bernt Lenning et al.
"We found no significant differences in the levels of mast cell activation markers TPSB2 and CPA3 between the long-COVID and control groups and no correlations with proxy markers of exercise intolerance. Mast cell activation does not appear to be part of long-term pathogenesis of long-COVID, at least in the majority of patients."
Article | Thread
Microvascular Research
Follow-up assessment of the microvascular function in patients with long COVID — Romanowska-Kocejko et al.
"This study shows microvascular function disturbances in patients with long COVID who were monitored for 3 months."
Article | Thread
Preprint: MedRxiv
Inhibition of HIF-2α Pathway as a Potential Therapeutic Strategy for Endothelial Dysfunction in Post-COVID Syndrome — Andrea Ribeiro et al.
"Persistent activation of HIF-2α by [spike protein] led to disrupted endothelial integrity. [Human retinal endothelial cells] exposed to plasma from severely affected PCS patients showed increased [reactive oxygen species] and compromised barrier function."
Article | Thread
Preprint: MedRxiv
Pediatric Long COVID Subphenotypes: An EHR-based study from the RECOVER program — Vitaly Lorman et al.
"in addition to fatigue, cardiac diagnoses (chest pain and arrythmias), headaches, musculoskeletal pain, neuropsychiatric symptoms, and POTS like symptoms such as dizziness and giddiness were relatively more common, as well as non-specific Long COVID diagnoses. Although these more common groups of diagnoses did not always occur in the same sets of patients, this constellation of diagnoses is suggestive of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
Article | Thread
Infection
Long/post-COVID in children and adolescents: symptom onset and recovery after one year based on healthcare records in Germany — Ehm et al.
"Among the few conditions that persisted longer following COVID-19 were some less frequent but serious conditions such as ME/CFS, which was especially relevant in adolescents."
Article | Thread
The American Journal of Medicine
Insights into Long COVID: Unraveling Risk Factors, Clinical Features, Radiological Findings, Functional Sequelae and Correlations: A Retrospective Cohort Study — Patrizia Pasculli et al.
"We also assessed lung parenchymal involvement at chest CT. More than two thirds of patients showed CT abnormalities, such as fibrotic alterations or persisting ground grass opacities, among both in- and out-patients."
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, articles and advocacy
USA A group of leading ME researchers have sent an open letter to the NIH Director, Monica Bertagnolli, urging her to include ME/CFS in the RECOVER Initiative on Long Covid. The letter is signed by Ian Lipkin, Anthony Komaroff, Susan Levine, Jose Montoya, Nancy Klimas, Lucinda Bateman, Derya Unutmaz, Daniel L. Peterson and Maureen Hanson.
Tweet with letter l Thread
Sweden
The recent guidelines for Long Covid and similar illnesses (including ME/CFS) is being criticised by many for being outdated and for recommending potentially harmful treatments such as graded exercise therapy. The Swedish Covid Association has written several opinion pieces in the media and sent a thorough, critical report to the National board of Social Affairs and Health about the guidelines. Thomas Lindén from the National Board of Social Affairs and Health has replied in an opinion piece where he says the guidelines can't get more into details for now, and that graded exercise is one of several things to offer against "tiredness".
Report l Opinion piece by Lindén l Thread
Sweden
Season two of the podcast "Maran" by "Eremiten" looks into current and historical events for the outdated treatment approaches for ME and long Covid.
Thread with introduction and links
The biggest 2-day exercise study
ME/CFS Skeptic analyses the largest study on repeated cardiopulmonary exercise testing. While ME/CFS patients decline more on the second test, there is a large overlap with healthy controls and difference do not correlate well with functional disability.
Article | Thread
#ThereForME World Patient Safety Day letter
An open letter to Wes Streeting from over 200 healthcare workers
Letter | Thread
UK The Times: Patients with severe ME at risk of starvation, doctors say
Nearly 200 health professionals have written to the health secretary saying that patients with the illness are being left to ‘languish behind closed doors’. The letter, co-ordinated by the #ThereForME campaign to mark World Patient Safety Day, highlights the lack of NHS provision for severe ME/CFS, leading in some cases to malnutrition and death.
Following the recent inquest into the death of Maeve Boothby O'Neill, "At a hearing next Friday, the coroner will consider whether there should be a prevention of future deaths report."
Article | Thread
BBC Long Covid sufferer's call for better support
An article about the same letter highlights the case of Dr Becky Williams who has been bedbound with Long Covid, now diagnosed as ME, since March 2020. Ms Williams said: “I feel we’ve all been left to rot - which I know sounds dramatic - neglected and not being listened to. This campaign is giving us all a voice, especially for people who are so severe they can’t talk and don’t have their own voice”.
Government spokesmen are quoted as saying they are "committed to improving care and support".
Article | Thread
Trial by Error by David Tuller Norwegian Tabloid Covers Stupid Gulf War Illness/PEM Study; My Letter to Journal Editor on Bogus Claims
About a media article where Professor Wyller spins a study on Gulf War Illness in order to claim patients with CFS can tolerate exercise. Tuller has written a letter to the journal that published the study stating that it "tells us nothing about the potentially harmful impact of exercise on a cohort of GWI patients who actually suffer from PEM".
Article l Thread
UK Action for ME "Everybody has a story" - a talk with Stuart Murdoch
"In a recent InterAction article, we spoke to Scottish singer-songwriter Stuart Murdoch about his journey with ME, which he shares in his new book, Nobody's Empire."
Article | Thread
.............
In memory
Sarah-Jayne Lewis has died. A beautiful tribute has been written: "Her legacy is one of passion, kindness, and unwavering support for others. SJ was a pillar of strength for the M.E. and chronic illness community, founding a Facebook support group to help others navigate their struggles."
Tribute l Thread (members only)
...............
Coming events
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
National Institutes of Health Campus
Monday, September 23, 2024 - Wednesday, September 25, 2024
Registration closed on August 30th.
Details | Thread
............
Research
ME/CFS research
International Journal of Molecular Sciences
Manual Therapy Improves Fibromyalgia Symptoms by Downregulating SIK1 - Bonastre-Férez et al.
The Spanish research team of Elisa Oltra tested a manual therapy (MT) pressure-controlled protocol on 38 fibromyalgia patients. The results show that the salt-induced kinase SIK1 gene was consistently downregulated by MT in FM, correlating with improvement of patient symptoms.
Article | Thread
Frontiers in Immunology
Meta-analysis of Natural Killer (NK) cell cytotoxicity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) - Baraniuk et al.
Twenty-eight papers and 55 effector : target cell ratio (E:T) data points were collected. Cytotoxicity in ME/CFS was significantly reduced to about half of healthy control levels. The heterogeneity of studies was high.
Article | Thread
BMC Medical Education
Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study - Anderson et al.
This study investigated the impact of a short immersive VR educational experience on knowledge of ME/CFS and empathy for those living with the condition in 28 medical students and 15 primary care health professionals.
Article | Thread
Ohio State University Thesis
Role for EBV- & HHV-6A-dUTPases on Immune Dysfunction in ME/CFS and other Chronic Multi-Symptom Illnesses - Brandon Cox
"Altogether, the data presented here demonstrates novel immunomodulatory properties of the EBV- and HHV-6-dUTPases and how they can potentially affect immune system function in a subset of people with ME/CFS and other chronic multi-symptom illnesses."
Thesis | Thread
ACS Chemical Neuroscience
Untargeted Metabolomics and Quantitative Analysis of Tryptophan Metabolites in Myalgic Encephalomyelitis Patients and Healthy Volunteers: A Comparative Study Using High-Resolution Mass Spectrometry - Abujrais et al
The study used plasma of 38 ME/CFS patients and 24 healthy controls, and found some differences which the authors conclude "suggest potential alterations in immune system response and oxidative stress in ME/CFS patients."
Article | Thread
Long Covid research
Medicine & Science in Sports & Exercise
COVID-19’s Impact on Athletes: Reduced Cardiorespiratory fitness after a SARS-CoV-2 Infection — Hasler, Erik et al.
"A SARS-CoV-2 infection was associated with a decrease in [Power output at individual anaerobic threshold] (-0.123 W/kg, p < 0.001), [maximal power output] (-0.099 W/kg, p = 0.002), measured V̇O2max/kg (-1.70 ml/min/kg, p = 0.050) and an increase [heart rate at individual anaerobic threshold] (2.50 b/min, p = 0.008), HRmax (2.59 b/min, p < 0.001) within the first 60 days"
Article | Thread
Proceedings of the National Academy of Sciences
SARS-CoV-2-specific CD8+ T cells from people with long COVID establish and maintain effector phenotype and key TCR signatures over 2 years — Rowntree et al.
"We show similarities between SARS-CoV-2-specific CD4 and CD8+ T cells from people with long COVID and non-LC controls, with both groups displaying key TCR signatures and TCRαβ clonotypes that can be detected over 2y following disease onset, suggesting that, at least at the clonotype level, T cell responses are unaffected by long COVID."
Article | Thread
Scandinavian Journal of Immunology
No signs of mast cell involvement in long-COVID: A case–control study — Ole Bernt Lenning et al.
"We found no significant differences in the levels of mast cell activation markers TPSB2 and CPA3 between the long-COVID and control groups and no correlations with proxy markers of exercise intolerance. Mast cell activation does not appear to be part of long-term pathogenesis of long-COVID, at least in the majority of patients."
Article | Thread
Microvascular Research
Follow-up assessment of the microvascular function in patients with long COVID — Romanowska-Kocejko et al.
"This study shows microvascular function disturbances in patients with long COVID who were monitored for 3 months."
Article | Thread
Preprint: MedRxiv
Inhibition of HIF-2α Pathway as a Potential Therapeutic Strategy for Endothelial Dysfunction in Post-COVID Syndrome — Andrea Ribeiro et al.
"Persistent activation of HIF-2α by [spike protein] led to disrupted endothelial integrity. [Human retinal endothelial cells] exposed to plasma from severely affected PCS patients showed increased [reactive oxygen species] and compromised barrier function."
Article | Thread
Preprint: MedRxiv
Pediatric Long COVID Subphenotypes: An EHR-based study from the RECOVER program — Vitaly Lorman et al.
"in addition to fatigue, cardiac diagnoses (chest pain and arrythmias), headaches, musculoskeletal pain, neuropsychiatric symptoms, and POTS like symptoms such as dizziness and giddiness were relatively more common, as well as non-specific Long COVID diagnoses. Although these more common groups of diagnoses did not always occur in the same sets of patients, this constellation of diagnoses is suggestive of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
Article | Thread
Infection
Long/post-COVID in children and adolescents: symptom onset and recovery after one year based on healthcare records in Germany — Ehm et al.
"Among the few conditions that persisted longer following COVID-19 were some less frequent but serious conditions such as ME/CFS, which was especially relevant in adolescents."
Article | Thread
The American Journal of Medicine
Insights into Long COVID: Unraveling Risk Factors, Clinical Features, Radiological Findings, Functional Sequelae and Correlations: A Retrospective Cohort Study — Patrizia Pasculli et al.
"We also assessed lung parenchymal involvement at chest CT. More than two thirds of patients showed CT abnormalities, such as fibrotic alterations or persisting ground grass opacities, among both in- and out-patients."
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Kalliope
Senior Member (Voting Rights)
Week beginning 23rd September 2024
News, articles and advocacy
#MEAction and Patient-led Research Collaborative have created a four-part medical education video series focusing on post-exertional malaise and pacing.
Videos | Thread
Sky News Excellent news segment on Long Covid and ME/CFS with former athlete Oonagh Cousins who developed Long Covid and is now advocating for more research into these illnesses.
News segment l Thread
USA
Solve M.E. shares news about their advocacy work having paved way for ME/CFS Research in $500M Women't Health Funding.
Article l Thread
KQED: Bay Area's Long COVID Community Celebrates Moonshot Bill for $10 Billion in Funding
"The Long COVID Research Moonshot Act would create a new research center within the National Institutes of Health to study the condition and other related illnesses, like ME/CFS and POTS."
Article l Thread
Newsletter for September from NIH on ongoing activities related to ME/CFS
Thread with newsletter
Sweden
Euractiv: "New guidelines for Swedish doctors criticised for putting patients at serious risk"
A good article in English about the recent and controversial guidelines for post-infection patients. Jonas Bergquist says: "... the board is recommending 'graded exercise therapy', GET, despite clinical research showing that it mostly doesn't work and could be harmful to post-infection patients groups as ME-patients."
Article l Thread
The newspaper Enköping-Bålstad wrote an article about ME patients protesting outside the county council in Stockholm against lack of treatments. Politicians met with the protestors. The patient organisation RME later wrote on Facebook that this resulted into a constructive conversation which they hope can continue.
Article l Facebook post RME l Thread
Finland A good opinion piece in Mediuutiset signed by more than 60 social and healthcare professionals on the need for increased knowledge on ME/CFS and Long Covid.
Opinion piece l Thread
...............
UK Inquest
Following the two week inquest into the death of Maeve Boothby O'Neill held last month, a hearing was held on Friday, as a result of which the coroner will issue a prevention of future deaths report.
Thread
The Times
Friday morning - NHS Bosses reject calls for specialist ME care
Friday evening - Coroner to report dangers of ME after Boothby O’Neill death
The Guardian
Friday - Not a single bed set aside to treat ME in any UK hospital, says NHS director.
Other media: Kent online | BBC | Telegraph
LBC Radio
Saturday Natasha Devon interview with Karen Hargrave
ME Association Maeve Boothby O’Neill Inquest – Regulation 28 Report to be issued - Dr Charles Shepherd
"the ME Association welcomes the decision by the Coroner to produce a Section 28 Prevention of Future Deaths report to try and ensure that no more deaths occur in this way and that this will be sent to the Dept of Health and Social Care (DHSC), NHS England and NICE."
Article | Thread
............
Crowdfunding
Trial by Error October Crowdfunding Campaign
David Tuller has shared the good news that he will continue his important work in reporting on ME/CFS, LC and MUS for another year. He decided to do so after having received many heartfelt responses to messages he sent out after his previous campaign "..and recognising that there's still plenty to do..". The crowdfunding through UC Berkeley for his work will go live Tuesday October 1st.
Thread l Crowdfunding
............
Research news and commentary
The Sick Times Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper - John Bolecek
"I’ll outline the reasons the conclusion is not justified and argue that the “effort preference” finding is deeply flawed and worthy of retraction. A misinterpreted finding from a 15-minute computer game, developed for depressive disorders, on a tiny sample of 15 sick participants should not have made it past Nature Communications’reviewers as a key finding of this paper."
Article | Thread
UK ME/CFS biobank the video is now available of the CureME team research exchange meeting at LSHTM on September 19th.
Video | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
was held on 23-25 September
The Sick Times | NPR podcast | Thread with links to articles and social media
DecodeME video Actress Jennie Jacques, who has ME/CFS, interviews Professor Chris Ponting about DecodeME, and the need for more research including replication of previous studies. "Only begin to believe things in ME science if you see them twice - independently twice."
Video (25 minutes) | Thread
.............
Research
ME/CFS research
PLOS ONE
Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey - Wood et al.
In a large, integrated health system, 1.67% of adults had ME/CFS-like illness and 14.12% of all persons with ME/CFS-like illness developed it after COVID-19. However, COVID-19 did not substantially increase ME/CFS-like illness in this cohort during the study time period.
Article | Thread
MedArchiv
A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study - Hung et al.
By utilizing a network analysis on whole genome sequencing data from the Severely Ill Patient Study, the authors identified ME/CFS-associated proteins. Their analysis points to pathways involved in cortisol synthesis and secretion and estrogen signalling pathways.
Article | Thread
Academia Molecular Biology & Genomics
Identifying the molecular dynamics of stress in chronic fatigue syndrome - Paplomatas et al.
The authors used an in silico method aimed at identifying key genes that establish a connection between stress and ME/CFS.
Article | Thread
European Journal of Clinical Investigation
Adrenergic dysfunction in patients with myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia: A systematic review and meta-analysis - Hendrix et al.
"Higher baseline adrenaline levels and atypical responses to exercise in ME/CFS indicate that sympathetic dysfunction, underscored by adrenergic abnormalities, is more involved in the pathophysiology of ME/CFS rather than FM."
Article | Thread
Long Covid research
Frontiers in Immunology
Exploring the role of galectin-9 and artemin as biomarkers in long COVID with chronic fatigue syndrome: links to inflammation and cognitive function — Elahi et al.
"A cut-off value of greater than 2813 pg/ml plasma ARTN distinguished LC from HCs with 79% sensitivity and 82% specificity in our discovery cohort. Similarly, a cut-off value of greater than 2780 pg/ml plasma ARTN differentiated LC from [Recovered] with 79% sensitivity and 83% specificity in the discovery cohort. Notably, in the validating cohort, a cut-off value of greater than 2855 pg/ml ARTN reliably differentiated LC patients from the [Recovered] group with 100% sensitivity and 70% specificity"
Article | Thread
iScience
Characterization model of the post COVID-19 condition based on immunological, biochemical, and cytokine markers — Bárbara Oliván-Blázquez et al.
"In this study, we analyzed more than 150 biomarkers to survey the immunological, biochemical, and coagulation characteristics of a cohort of individuals who suffered an episode of acute COVID-19 during 2020 and early 2021, comparing individuals who developed PCC versus individuals who overcame COVID-19 without persistent or new symptoms."
Article | Thread
Cell
Mechanisms of long COVID and the path toward therapeutics — Michael J. Peluso and Steven G. Deeks
"Here, we review the current state of knowledge regarding the biology and pathophysiology of long COVID, focusing on how the proposed mechanisms explain the physiology of the syndrome and how they provide a rationale for the implementation of a broad experimental medicine and clinical trials agenda."
Article | Thread
Non-Coding RNA
Circulating miRNAs in the Plasma of Post-COVID-19 Patients with Typical Recovery and Those with Long-COVID Symptoms: Regulation of Immune Response-Associated Pathways — Timofeeva et al.
"We detected an alteration in the expression of three miRNAs out of 10 miRNAs, namely, miR-200c-3p, miR-766-3p, and miR-142-3p. It is worth mentioning that among the patients experiencing rheumatologic complications of long COVID, a notable decrease in the expression of these miRNAs was observed."
Article | Thread
Frontiers in Immunology
Alterations in the plasma proteome persist ten months after recovery from mild to moderate SARS-CoV-2 infection — Huapaya et al.
"Proteins associated with any persistent symptom attributed to long COVID at ten months postinfection included FKBP7, which accelerates the folding of proteins during protein synthesis, and COMMD7, which associates with the NF-kappa-B complex and suppresses its transcriptional activity." "Notably, NXPH1, which may play a role in the modulation of synaptic transmission, was the top protein associated with neurological symptoms."
Article | Thread
Lancet: eClinicalMedicine
Changes in memory and cognition during the SARS-CoV-2 human challenge study — William Trender et al.
"Infected volunteers showed statistically lower baseline-corrected global composite cognitive scores than uninfected volunteers, both acutely and during follow up" "Memory and executive function tasks showed the largest between-group differences."
Article | Thread
NeuroImage
Differences in brain structure and cognitive performance between patients with long-COVID and those with normal recovery — Nelson et al.
"Differences in diffusivity between long-COVID and normal recovery groups were found on only one DTI metric. This could represent subtle areas of pathology such as gliosis or edema, but the small effect sizes and nonspecific nature of the diffusion indices make pathological inference difficult."
Article | Thread
Psychiatry Research
Neural basis of fatigue in post-COVID syndrome and relationships with cognitive complaints and cognition — Diez-Cirarda et al.
"patients with post-COVID syndrome at 14 months from the infection presented functional connectivity and white matter associations with fatigue symptoms, mostly in frontal but also temporal and cerebellar areas."
Article | Thread
Lancet: eBioMedicine
Crowd-sourced machine learning prediction of long COVID using data from the National COVID Cohort Collaborative — Timothy Bergquist et al.
"74 teams designed and built 35 Long COVID prediction models using the N3C data enclave. The top 10 teams all scored above a 0.80 Area Under the Receiver Operator Curve (AUROC) with the highest scoring model achieving a mean AUROC of 0.895."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, articles and advocacy
#MEAction and Patient-led Research Collaborative have created a four-part medical education video series focusing on post-exertional malaise and pacing.
Videos | Thread
Sky News Excellent news segment on Long Covid and ME/CFS with former athlete Oonagh Cousins who developed Long Covid and is now advocating for more research into these illnesses.
News segment l Thread
USA
Solve M.E. shares news about their advocacy work having paved way for ME/CFS Research in $500M Women't Health Funding.
Article l Thread
KQED: Bay Area's Long COVID Community Celebrates Moonshot Bill for $10 Billion in Funding
"The Long COVID Research Moonshot Act would create a new research center within the National Institutes of Health to study the condition and other related illnesses, like ME/CFS and POTS."
Article l Thread
Newsletter for September from NIH on ongoing activities related to ME/CFS
Thread with newsletter
Sweden
Euractiv: "New guidelines for Swedish doctors criticised for putting patients at serious risk"
A good article in English about the recent and controversial guidelines for post-infection patients. Jonas Bergquist says: "... the board is recommending 'graded exercise therapy', GET, despite clinical research showing that it mostly doesn't work and could be harmful to post-infection patients groups as ME-patients."
Article l Thread
The newspaper Enköping-Bålstad wrote an article about ME patients protesting outside the county council in Stockholm against lack of treatments. Politicians met with the protestors. The patient organisation RME later wrote on Facebook that this resulted into a constructive conversation which they hope can continue.
Article l Facebook post RME l Thread
Finland A good opinion piece in Mediuutiset signed by more than 60 social and healthcare professionals on the need for increased knowledge on ME/CFS and Long Covid.
Opinion piece l Thread
...............
UK Inquest
Following the two week inquest into the death of Maeve Boothby O'Neill held last month, a hearing was held on Friday, as a result of which the coroner will issue a prevention of future deaths report.
Thread
The Times
Friday morning - NHS Bosses reject calls for specialist ME care
Friday evening - Coroner to report dangers of ME after Boothby O’Neill death
The Guardian
Friday - Not a single bed set aside to treat ME in any UK hospital, says NHS director.
Other media: Kent online | BBC | Telegraph
LBC Radio
Saturday Natasha Devon interview with Karen Hargrave
ME Association Maeve Boothby O’Neill Inquest – Regulation 28 Report to be issued - Dr Charles Shepherd
"the ME Association welcomes the decision by the Coroner to produce a Section 28 Prevention of Future Deaths report to try and ensure that no more deaths occur in this way and that this will be sent to the Dept of Health and Social Care (DHSC), NHS England and NICE."
Article | Thread
............
Crowdfunding
Trial by Error October Crowdfunding Campaign
David Tuller has shared the good news that he will continue his important work in reporting on ME/CFS, LC and MUS for another year. He decided to do so after having received many heartfelt responses to messages he sent out after his previous campaign "..and recognising that there's still plenty to do..". The crowdfunding through UC Berkeley for his work will go live Tuesday October 1st.
Thread l Crowdfunding
............
Research news and commentary
The Sick Times Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper - John Bolecek
"I’ll outline the reasons the conclusion is not justified and argue that the “effort preference” finding is deeply flawed and worthy of retraction. A misinterpreted finding from a 15-minute computer game, developed for depressive disorders, on a tiny sample of 15 sick participants should not have made it past Nature Communications’reviewers as a key finding of this paper."
Article | Thread
UK ME/CFS biobank the video is now available of the CureME team research exchange meeting at LSHTM on September 19th.
Video | Thread
USA: NIH workshop
RECOVER Treating Long COVID – Navigating the Pathway Forward
was held on 23-25 September
The Sick Times | NPR podcast | Thread with links to articles and social media
DecodeME video Actress Jennie Jacques, who has ME/CFS, interviews Professor Chris Ponting about DecodeME, and the need for more research including replication of previous studies. "Only begin to believe things in ME science if you see them twice - independently twice."
Video (25 minutes) | Thread
.............
Research
ME/CFS research
PLOS ONE
Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey - Wood et al.
In a large, integrated health system, 1.67% of adults had ME/CFS-like illness and 14.12% of all persons with ME/CFS-like illness developed it after COVID-19. However, COVID-19 did not substantially increase ME/CFS-like illness in this cohort during the study time period.
Article | Thread
MedArchiv
A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study - Hung et al.
By utilizing a network analysis on whole genome sequencing data from the Severely Ill Patient Study, the authors identified ME/CFS-associated proteins. Their analysis points to pathways involved in cortisol synthesis and secretion and estrogen signalling pathways.
Article | Thread
Academia Molecular Biology & Genomics
Identifying the molecular dynamics of stress in chronic fatigue syndrome - Paplomatas et al.
The authors used an in silico method aimed at identifying key genes that establish a connection between stress and ME/CFS.
Article | Thread
European Journal of Clinical Investigation
Adrenergic dysfunction in patients with myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia: A systematic review and meta-analysis - Hendrix et al.
"Higher baseline adrenaline levels and atypical responses to exercise in ME/CFS indicate that sympathetic dysfunction, underscored by adrenergic abnormalities, is more involved in the pathophysiology of ME/CFS rather than FM."
Article | Thread
Long Covid research
Frontiers in Immunology
Exploring the role of galectin-9 and artemin as biomarkers in long COVID with chronic fatigue syndrome: links to inflammation and cognitive function — Elahi et al.
"A cut-off value of greater than 2813 pg/ml plasma ARTN distinguished LC from HCs with 79% sensitivity and 82% specificity in our discovery cohort. Similarly, a cut-off value of greater than 2780 pg/ml plasma ARTN differentiated LC from [Recovered] with 79% sensitivity and 83% specificity in the discovery cohort. Notably, in the validating cohort, a cut-off value of greater than 2855 pg/ml ARTN reliably differentiated LC patients from the [Recovered] group with 100% sensitivity and 70% specificity"
Article | Thread
iScience
Characterization model of the post COVID-19 condition based on immunological, biochemical, and cytokine markers — Bárbara Oliván-Blázquez et al.
"In this study, we analyzed more than 150 biomarkers to survey the immunological, biochemical, and coagulation characteristics of a cohort of individuals who suffered an episode of acute COVID-19 during 2020 and early 2021, comparing individuals who developed PCC versus individuals who overcame COVID-19 without persistent or new symptoms."
Article | Thread
Cell
Mechanisms of long COVID and the path toward therapeutics — Michael J. Peluso and Steven G. Deeks
"Here, we review the current state of knowledge regarding the biology and pathophysiology of long COVID, focusing on how the proposed mechanisms explain the physiology of the syndrome and how they provide a rationale for the implementation of a broad experimental medicine and clinical trials agenda."
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Non-Coding RNA
Circulating miRNAs in the Plasma of Post-COVID-19 Patients with Typical Recovery and Those with Long-COVID Symptoms: Regulation of Immune Response-Associated Pathways — Timofeeva et al.
"We detected an alteration in the expression of three miRNAs out of 10 miRNAs, namely, miR-200c-3p, miR-766-3p, and miR-142-3p. It is worth mentioning that among the patients experiencing rheumatologic complications of long COVID, a notable decrease in the expression of these miRNAs was observed."
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Frontiers in Immunology
Alterations in the plasma proteome persist ten months after recovery from mild to moderate SARS-CoV-2 infection — Huapaya et al.
"Proteins associated with any persistent symptom attributed to long COVID at ten months postinfection included FKBP7, which accelerates the folding of proteins during protein synthesis, and COMMD7, which associates with the NF-kappa-B complex and suppresses its transcriptional activity." "Notably, NXPH1, which may play a role in the modulation of synaptic transmission, was the top protein associated with neurological symptoms."
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Lancet: eClinicalMedicine
Changes in memory and cognition during the SARS-CoV-2 human challenge study — William Trender et al.
"Infected volunteers showed statistically lower baseline-corrected global composite cognitive scores than uninfected volunteers, both acutely and during follow up" "Memory and executive function tasks showed the largest between-group differences."
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NeuroImage
Differences in brain structure and cognitive performance between patients with long-COVID and those with normal recovery — Nelson et al.
"Differences in diffusivity between long-COVID and normal recovery groups were found on only one DTI metric. This could represent subtle areas of pathology such as gliosis or edema, but the small effect sizes and nonspecific nature of the diffusion indices make pathological inference difficult."
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Psychiatry Research
Neural basis of fatigue in post-COVID syndrome and relationships with cognitive complaints and cognition — Diez-Cirarda et al.
"patients with post-COVID syndrome at 14 months from the infection presented functional connectivity and white matter associations with fatigue symptoms, mostly in frontal but also temporal and cerebellar areas."
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Lancet: eBioMedicine
Crowd-sourced machine learning prediction of long COVID using data from the National COVID Cohort Collaborative — Timothy Bergquist et al.
"74 teams designed and built 35 Long COVID prediction models using the N3C data enclave. The top 10 teams all scored above a 0.80 Area Under the Receiver Operator Curve (AUROC) with the highest scoring model achieving a mean AUROC of 0.895."
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