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News in Brief - October 2024
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Week beginning 30th September 2024
Part 1 of 2
News, articles and advocacy
Cochrane Review Exercise therapy for CFS
It is 5 years since Cochrane published the 2019 version of the Larun et al review on 2nd October 2019, and set up a process intended to produce an updated review in two years.
There has been no substantive response from Cochrane to Science for ME letters, complaints or the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" which remains open. The latest petition update marks the 5th anniversary and lists 6 broken promises, including no updates on the new review since December 2023.
Petition | Petition update | Thread
UK APPG The All Party Parliamentary Group for ME/CFS
The MEA and AfME expect to provide joint secretriat for a new APPG for the newly elected parliament. People in the UK are encouraged to contact their MP to suggest they join the APPG which needs a minimum of 20 members.
MEA article | AfME article | Thread
UK ME Association Recognise ME – Raising Awareness in GP Practices
A six month awareness campaign distributing posters, leaflets and screen adverts for display in GP surgeries.
Article | Thread
The Times letters Specialist ME care - Professor Baroness Finlay of Llandaff and Dr Peter Barry.
The chair and vice chair of the 2021 NICE ME/CFS guideline respond to the Times article, "NHS bosses reject calls for specialist ME care".
"We have been deeply disappointed that the guideline recommendations have not been implemented by those commissioning clinical services, and hope that the coroner's report will lead to much needed change".
Thread with copy of letter
ME Guidelines - Dr Charles Shepherd reiterates the lack of implemention of NICE, and says the DHSC delivery plan must include an audit of all health trusts' provision for severe and very severe ME/CFS.
Thread with copy of letter
BBC Breakfast TV Interview with Dr Binita Kane and Sarah Boothby about Severe ME/CFS and doctors who have had no training not understanding or listening to severely ill patients with ME/CFS.
Video | Thread
Essay The Dilemma of Caring and Doing Research for Severe ME/CFS Patients
A well written piece by Christian Kull based on the experience of trying to get care for his son: "Patients are torn between wanting to learn more about their condition, seeing more experts, getting more medical attention… and a legitimate fear of the consequences. They don’t have the energy to bang on the doors of doctors to demand more help, and often cannot afford the after-effects of doctors’ attention and ministrations."
The article is included in a Health Rising blog titled: "The “Elephant in the Room” Awakens: The Severely Ill with ME/CFS After Maeve’s Tragic Death" by Cort Johnson
Thread with essay
tvo today Has Everyone Forgotten About COVID?
An informative panel discussion from Canadian TV on the pandemic and risks of long Covid with Isaac Bogoch, Dawn Bowdish and Kwame McKenzie.
Full program l Thread
NEJM Intention to treat - What Exactly Is Long Covid?
Good podcast presenting two cases of patients with long Covid and a discussion with president of the Longhauler Advocacy Project Karyn Bishop and Dr. Wesley Ely. Dr. Ely calls long Covid a public health nightmare and says parts of the disease has a lot to do with the symptoms of ME/CFS.
Podcast and transcript l Thread
The Guardian Stuart Murdoch: 'I feel like this book will be the Trainspotting of ME'
Interview with musician and author Stuart Murdoch, who has lived with ME since the late 80's, about his autobiographical novel "Nobody's Empire".
Article l Thread
inews My sporty son is bedbound with long Covid - nearly every doctor let him down
On Long Covid in children, the lack of care and the lack of strategy to protect them. Dr. Nigel Speight, consultant paediatrician with long experience with ME and now LC says: "GPs tend to lack confidence to get off the fence with long Covid, and they depend on specialists. But with children, even paediatricians sit on the fence and can't say what it is".
Article l Thread
..........
In memory
Tinu Abayomi-Paul
Tinu Abayomi-Paul has died. In an Instagram announcement of her death she is described as a "Beloved daughter, granddaughter, aunt, cousin, friend, writer, and activist". She was an advocate and volunteer for black women and disabled people. She also fought for public health policies for people who are high risk for Covid. She suffered from cancer, Long Covid and ME/CFS. The Sick Times has written the article: "Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52" about her. Family and friends are fundraising for her funeral and for other costs.
Article l Fundraising l Thread (members only)
...............
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
...............
Useful resources
Bateman Horne Center Life with a Low Battery: Living with ME/CFS
A short introduction video about ME/CFS. From the presentation: "Join Mito, the newest member of the Bateman Horne Center, as she takes you on a journey to understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using an analogy we can all relate to: your cell phone's battery." The video has different versions to accommodate for sensory needs.
Video (Full color, with music) l Thread
................
Research news and commentary
USA CDC
"NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of ME/CFS (MCAM) study are now available on mapMECFS and searchMECFS... The MCAM study was conducted between 2012 and 2020 at seven ME/CFS specialty clinical sites across the United States. The data from clinical assessments and biospecimens are available for 459 individuals with ME/CFS and 343 healthy controls."
Thread with link
USA NIH RECOVER "Researching Covid to Enhance Recovery–Treating Long Covid (RECOVER-TLC) is an FNIH initiative led by the National Institute of Allergy and Infectious Diseases (NIAID)... As an important first step, we are inviting the community to help identify promising therapeutic approaches."
Article with link for submitting suggestions | Thread
Workshop videos
The Recover-TLC Workshop (September 23-25) is now on YouTube. It's divided into 43 videos.
Videos | Thread
The Sick Times This journalist-founded website covering Long Covid has launched a podcast titled "Still Here". In the pilot episode "co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. Engagement editor Heather Hogan joins James, Miles, and Betsy to recap the NIH RECOVER-TLC meeting from last week. And in research, a hopeful update about a nasal spray effective at blocking respiratory viruses — including COVID-19."
Podcast and transcript l Thread
Netherlands
The blog ME Centraal is asking is asking people to send in questions for an interview with researcher Ruud Raijmakers who manages one of the ME/CFS projects at the NMCB consortium.
Article | Thread
Boston Globe For COVID 'long haulers', glimmers of good news
On Dr. David Systrom's work at Brigham and Women's Hospital. "A growing body of research suggests that both long COVID and chronic fatigue are post-viral syndromes that result in chronic, low-grade inflammation that can damage healthy tissue and, in some cases, the production of auto-antibodies that can attack it. Systrom and others have begun to catalog the scope of the microscopic carnage caused by the immune system's friendly fire."
Article (archived) l Thread
Nature How long COVID could lift the fog on neurocognitive disorders, by Michael J. Peluso and E. Wesley Ely
"We serve as co-investigators on a soon-to-launch National Institute on Aging-funded phase III trial to test whether baricitinib, an immune-modulating medication, can improve symptoms of patients with ADRD from long COVID. We hope that this and similar work will open the door for studies of other infection-associated chronic conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and post-treatment Lyme disease."
Article l Thread
Discrepancies in 2-day exercise studies
In a new blog post ME/CFS Skeptic looks at previous studies on 2-day exercise testing in ME/CFS. Most of the studies are very small and several show various discrepancies (e.g. data that looks like an error).
Article | Thread
................
Go to the next post for part 2 on research.
Part 1 of 2
News, articles and advocacy
Cochrane Review Exercise therapy for CFS
It is 5 years since Cochrane published the 2019 version of the Larun et al review on 2nd October 2019, and set up a process intended to produce an updated review in two years.
There has been no substantive response from Cochrane to Science for ME letters, complaints or the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" which remains open. The latest petition update marks the 5th anniversary and lists 6 broken promises, including no updates on the new review since December 2023.
Petition | Petition update | Thread
UK APPG The All Party Parliamentary Group for ME/CFS
The MEA and AfME expect to provide joint secretriat for a new APPG for the newly elected parliament. People in the UK are encouraged to contact their MP to suggest they join the APPG which needs a minimum of 20 members.
MEA article | AfME article | Thread
UK ME Association Recognise ME – Raising Awareness in GP Practices
A six month awareness campaign distributing posters, leaflets and screen adverts for display in GP surgeries.
Article | Thread
The Times letters Specialist ME care - Professor Baroness Finlay of Llandaff and Dr Peter Barry.
The chair and vice chair of the 2021 NICE ME/CFS guideline respond to the Times article, "NHS bosses reject calls for specialist ME care".
"We have been deeply disappointed that the guideline recommendations have not been implemented by those commissioning clinical services, and hope that the coroner's report will lead to much needed change".
Thread with copy of letter
ME Guidelines - Dr Charles Shepherd reiterates the lack of implemention of NICE, and says the DHSC delivery plan must include an audit of all health trusts' provision for severe and very severe ME/CFS.
Thread with copy of letter
BBC Breakfast TV Interview with Dr Binita Kane and Sarah Boothby about Severe ME/CFS and doctors who have had no training not understanding or listening to severely ill patients with ME/CFS.
Video | Thread
Essay The Dilemma of Caring and Doing Research for Severe ME/CFS Patients
A well written piece by Christian Kull based on the experience of trying to get care for his son: "Patients are torn between wanting to learn more about their condition, seeing more experts, getting more medical attention… and a legitimate fear of the consequences. They don’t have the energy to bang on the doors of doctors to demand more help, and often cannot afford the after-effects of doctors’ attention and ministrations."
The article is included in a Health Rising blog titled: "The “Elephant in the Room” Awakens: The Severely Ill with ME/CFS After Maeve’s Tragic Death" by Cort Johnson
Thread with essay
tvo today Has Everyone Forgotten About COVID?
An informative panel discussion from Canadian TV on the pandemic and risks of long Covid with Isaac Bogoch, Dawn Bowdish and Kwame McKenzie.
Full program l Thread
NEJM Intention to treat - What Exactly Is Long Covid?
Good podcast presenting two cases of patients with long Covid and a discussion with president of the Longhauler Advocacy Project Karyn Bishop and Dr. Wesley Ely. Dr. Ely calls long Covid a public health nightmare and says parts of the disease has a lot to do with the symptoms of ME/CFS.
Podcast and transcript l Thread
The Guardian Stuart Murdoch: 'I feel like this book will be the Trainspotting of ME'
Interview with musician and author Stuart Murdoch, who has lived with ME since the late 80's, about his autobiographical novel "Nobody's Empire".
Article l Thread
inews My sporty son is bedbound with long Covid - nearly every doctor let him down
On Long Covid in children, the lack of care and the lack of strategy to protect them. Dr. Nigel Speight, consultant paediatrician with long experience with ME and now LC says: "GPs tend to lack confidence to get off the fence with long Covid, and they depend on specialists. But with children, even paediatricians sit on the fence and can't say what it is".
Article l Thread
..........
In memory
Tinu Abayomi-Paul
Tinu Abayomi-Paul has died. In an Instagram announcement of her death she is described as a "Beloved daughter, granddaughter, aunt, cousin, friend, writer, and activist". She was an advocate and volunteer for black women and disabled people. She also fought for public health policies for people who are high risk for Covid. She suffered from cancer, Long Covid and ME/CFS. The Sick Times has written the article: "Tinu Abayomi-Paul, writer, disability advocate, and person with Long COVID, dies at 52" about her. Family and friends are fundraising for her funeral and for other costs.
Article l Fundraising l Thread (members only)
...............
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
...............
Useful resources
Bateman Horne Center Life with a Low Battery: Living with ME/CFS
A short introduction video about ME/CFS. From the presentation: "Join Mito, the newest member of the Bateman Horne Center, as she takes you on a journey to understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using an analogy we can all relate to: your cell phone's battery." The video has different versions to accommodate for sensory needs.
Video (Full color, with music) l Thread
................
Research news and commentary
USA CDC
"NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of ME/CFS (MCAM) study are now available on mapMECFS and searchMECFS... The MCAM study was conducted between 2012 and 2020 at seven ME/CFS specialty clinical sites across the United States. The data from clinical assessments and biospecimens are available for 459 individuals with ME/CFS and 343 healthy controls."
Thread with link
USA NIH RECOVER "Researching Covid to Enhance Recovery–Treating Long Covid (RECOVER-TLC) is an FNIH initiative led by the National Institute of Allergy and Infectious Diseases (NIAID)... As an important first step, we are inviting the community to help identify promising therapeutic approaches."
Article with link for submitting suggestions | Thread
Workshop videos
The Recover-TLC Workshop (September 23-25) is now on YouTube. It's divided into 43 videos.
Videos | Thread
The Sick Times This journalist-founded website covering Long Covid has launched a podcast titled "Still Here". In the pilot episode "co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. Engagement editor Heather Hogan joins James, Miles, and Betsy to recap the NIH RECOVER-TLC meeting from last week. And in research, a hopeful update about a nasal spray effective at blocking respiratory viruses — including COVID-19."
Podcast and transcript l Thread
Netherlands
The blog ME Centraal is asking is asking people to send in questions for an interview with researcher Ruud Raijmakers who manages one of the ME/CFS projects at the NMCB consortium.
Article | Thread
Boston Globe For COVID 'long haulers', glimmers of good news
On Dr. David Systrom's work at Brigham and Women's Hospital. "A growing body of research suggests that both long COVID and chronic fatigue are post-viral syndromes that result in chronic, low-grade inflammation that can damage healthy tissue and, in some cases, the production of auto-antibodies that can attack it. Systrom and others have begun to catalog the scope of the microscopic carnage caused by the immune system's friendly fire."
Article (archived) l Thread
Nature How long COVID could lift the fog on neurocognitive disorders, by Michael J. Peluso and E. Wesley Ely
"We serve as co-investigators on a soon-to-launch National Institute on Aging-funded phase III trial to test whether baricitinib, an immune-modulating medication, can improve symptoms of patients with ADRD from long COVID. We hope that this and similar work will open the door for studies of other infection-associated chronic conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and post-treatment Lyme disease."
Article l Thread
Discrepancies in 2-day exercise studies
In a new blog post ME/CFS Skeptic looks at previous studies on 2-day exercise testing in ME/CFS. Most of the studies are very small and several show various discrepancies (e.g. data that looks like an error).
Article | Thread
................
Go to the next post for part 2 on research.
Last edited by a moderator:
Week beginning 30th September 2024
Part 2 of 2
Research
ME/CFS research
Medical Hypotheses
Chronic fatigue syndrome and multiple sclerosis have reduced craniospinal compliance and dilated pressurized bridging cortical veins - G & A Bateman
The authors speculate that findings about cortical veins in MS may also be true for ME/CFS, citing two case studies.
Article | Thread
BMC Immunology
Review: Autoimmunity’s enigmatic role: exploring the connection with ME/CFS - Batham, Marshall-Gradisnik et al
The authors reviewed 10 studies and found "highlight inconsistent and insufficient evidence to classify ME/CFS as an autoimmune disease".
Article | Thread
Research Methods & Reporting
Recommendations on recording harms in randomised controlled trials of behaviour change interventions - Papaioannou et al.
The processes and definitions originally designed to record harms within drug trials are typically followed to record harms in trials of behaviour change interventions owing to the lack of alternative guidance. Therefore, important harms could be missed in the evaluations of behaviour change interventions.
Article | Thread
The European Society of Medicine
The impact of COVID-19 on the understanding, management and treatment of post-viral conditions - Tate et al.
The authors write that: "from over 775 million worldwide COVID-19 infections reported to date there has arisen an estimated 60 million cases of Long COVID. Long COVID is a hetergeneous condition with ~50% having a classic Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like syndrome."
Article | Thread
Long Covid research
Nanoscale
Cell invasive amyloid assemblies from SARS-CoV-2 peptides can form multiple polymorphs with varying neurotoxicity — Oana Sanislav et al.
"We show, for the first time, direct evidence of cellular uptake of viral amyloids into neuronal cells, further supporting the hypothesis that some of the neurological symptoms of COVID-19 and PASC may possess a neurotoxic amyloid aetiology."
Article | Thread
Viruses
Type I Interferonopathy among Non-Elderly Female Patients with Post-Acute Sequelae of COVID-19 — Xu and Qin
"In our study, increased expression of common [interferon stimulated genes] has been identified in most peripheral monocyte subsets and other major immune cells from non-elderly female PASC patients, suggesting the crucial role of uncontrolled type I IFN signaling and/or type I interferonopathy in PASC."
Article | Thread
Infection
No reduced serum serotonin levels in patients with post-acute sequelae of COVID-19 — Mathé et al.
"The present study could not confirm previously described differences in peripheral serotonin levels between PASC patients and healthy control subjects. We found no correlation of serotonin levels with the severity of PASC-associated fatigue or with the severity of depressive symptoms."
Article | Thread
Nature Scientific Reports
Modeling the burden of long COVID in California with quality adjusted life-years (QALYS) — Zhu et al.
"An age and variant-specific approach was used to estimate the burden of long COVID in California using modeling methods. Total and severity specific burden was unequal across age groups; the highest cumulative and per capita QALY burden was in adults 18–49"
Article | Thread
Occupational and Environmental Medicine
Post COVID-19 syndrome among 5248 healthcare workers in England: longitudinal findings from NHS CHECK — Brendan Dempsey et al.
"The difference between the number of HCWs reporting symptoms consistent with PCS and those reporting a formal diagnosis of LC or PCS is striking."
Article | Thread
JAMA Network Open
Lithium Aspartate for Long COVID Fatigue and Cognitive Dysfunction: A Randomized Clinical Trial — Thomas Guttuso et al.
"In this RCT, therapy with lithium aspartate, 10 to 15 mg/d, was ineffective for neurologic PCC fatigue and cognitive dysfunction."
Article | Thread
Journal of Rehabilitation Medicine - Clinical Communications
Follow-up of patients with post covid-19 condition after a multidisciplinary team assessment: a pilot study — Alexander Wigge et al.
"This study showed no statistically significant improvements in PCC following multidisciplinary team assessment and a rehabilitation plan."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Part 2 of 2
Research
ME/CFS research
Medical Hypotheses
Chronic fatigue syndrome and multiple sclerosis have reduced craniospinal compliance and dilated pressurized bridging cortical veins - G & A Bateman
The authors speculate that findings about cortical veins in MS may also be true for ME/CFS, citing two case studies.
Article | Thread
BMC Immunology
Review: Autoimmunity’s enigmatic role: exploring the connection with ME/CFS - Batham, Marshall-Gradisnik et al
The authors reviewed 10 studies and found "highlight inconsistent and insufficient evidence to classify ME/CFS as an autoimmune disease".
Article | Thread
Research Methods & Reporting
Recommendations on recording harms in randomised controlled trials of behaviour change interventions - Papaioannou et al.
The processes and definitions originally designed to record harms within drug trials are typically followed to record harms in trials of behaviour change interventions owing to the lack of alternative guidance. Therefore, important harms could be missed in the evaluations of behaviour change interventions.
Article | Thread
The European Society of Medicine
The impact of COVID-19 on the understanding, management and treatment of post-viral conditions - Tate et al.
The authors write that: "from over 775 million worldwide COVID-19 infections reported to date there has arisen an estimated 60 million cases of Long COVID. Long COVID is a hetergeneous condition with ~50% having a classic Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-like syndrome."
Article | Thread
Long Covid research
Nanoscale
Cell invasive amyloid assemblies from SARS-CoV-2 peptides can form multiple polymorphs with varying neurotoxicity — Oana Sanislav et al.
"We show, for the first time, direct evidence of cellular uptake of viral amyloids into neuronal cells, further supporting the hypothesis that some of the neurological symptoms of COVID-19 and PASC may possess a neurotoxic amyloid aetiology."
Article | Thread
Viruses
Type I Interferonopathy among Non-Elderly Female Patients with Post-Acute Sequelae of COVID-19 — Xu and Qin
"In our study, increased expression of common [interferon stimulated genes] has been identified in most peripheral monocyte subsets and other major immune cells from non-elderly female PASC patients, suggesting the crucial role of uncontrolled type I IFN signaling and/or type I interferonopathy in PASC."
Article | Thread
Infection
No reduced serum serotonin levels in patients with post-acute sequelae of COVID-19 — Mathé et al.
"The present study could not confirm previously described differences in peripheral serotonin levels between PASC patients and healthy control subjects. We found no correlation of serotonin levels with the severity of PASC-associated fatigue or with the severity of depressive symptoms."
Article | Thread
Nature Scientific Reports
Modeling the burden of long COVID in California with quality adjusted life-years (QALYS) — Zhu et al.
"An age and variant-specific approach was used to estimate the burden of long COVID in California using modeling methods. Total and severity specific burden was unequal across age groups; the highest cumulative and per capita QALY burden was in adults 18–49"
Article | Thread
Occupational and Environmental Medicine
Post COVID-19 syndrome among 5248 healthcare workers in England: longitudinal findings from NHS CHECK — Brendan Dempsey et al.
"The difference between the number of HCWs reporting symptoms consistent with PCS and those reporting a formal diagnosis of LC or PCS is striking."
Article | Thread
JAMA Network Open
Lithium Aspartate for Long COVID Fatigue and Cognitive Dysfunction: A Randomized Clinical Trial — Thomas Guttuso et al.
"In this RCT, therapy with lithium aspartate, 10 to 15 mg/d, was ineffective for neurologic PCC fatigue and cognitive dysfunction."
Article | Thread
Journal of Rehabilitation Medicine - Clinical Communications
Follow-up of patients with post covid-19 condition after a multidisciplinary team assessment: a pilot study — Alexander Wigge et al.
"This study showed no statistically significant improvements in PCC following multidisciplinary team assessment and a rehabilitation plan."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 7th October 2024
News, articles and advocacy
USA Open Access Government Creating a Research Home for ME/CFS, Long Covid, and others"
Op-ed by Emily Taylor, President and CEO of Solve M.E on the importance of more research into infection-associated chronic conditions and illnesses.
Oped (p. 40-41) l Thread
ContagionLive "Unmasking Long Covid Through Understanding Prevalence and Diagnosis"
A Long COVID roundtable which is a collaborative project from ContagionLive and NeurologyLive.
'In this first episode, clinicians discuss the prevalence of Long COVID, its underestimation due to subclinical cases and recruitment challenges, and stress the importance of thorough history-taking for accurate diagnosis, especially regarding its overlap with ME/CFS..'
Episode l Thread
New Zealand
A feature article in three parts by newsroom on Long Covid in New Zealand.
Part one: 'Long Covid sufferers' quality of life close to MS patients'.
Part two: 'Kiwis with Long Covid speak out'
Part three: 'Government's head in the sand on Long Covid'
Thread
USA ANCC (American Nurses Credentialing Center) and Sigma have rewarded the project "Community Insight to Clinical Care: A Nursing-Led Evidence Based Patient Education Program for ME/CFS" as recipient of the Sigma/ANCC Evidence-Based Practice Implementation Grant. The team behind the project includes Jessica Ask, MSN, RN, Stephanie Grach, MS,MD and Jamie Seltzer, MS, and is led by Nisha Mathews, PhD, MSN, RN. "This nursing-led project addresses the critical need for enhanced patient education in managing ME/CFS, a condition affecting millions globally, particularly in the wake of long COVID-19."
Article l Thread
USA Mount Sinai Opens State-of-the-Art Center for Patients With Complex Conditions Including Lyme Disease and Long COVID
David Putrino comments: "Our Center will be one of the few places in the world embedded in a major clinical institution that's able to provide outstanding care management as well as leading-edge research focused on biological discovery".
Article l Thread
Germany
Christian Zacharias, a German patient with ME/CFS, has published a book titled "Everything is psychosomatic". It covers ME/CFS and Long Covid, the plight of those affected, their fight for research and education, the sabotage by some doctors and the sluggish reaction of politicians.
Article | Thread
.........
UK inquest
Prevention of Future Deaths Report
Following the recent inquest into the death of Maeve Boothby O’Neill, the coroner, Deborah Archer, has written a Regulation 28 Prevention of Future Deaths Report.
Report
The Times Coroner demands urgent action to prevent further deaths from ME
"Deborah Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action. She wrote in a Regulation 28 report: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”"
Article | Archived version | Thread
Further coverage:
The Times | The Times letter | The Guardian | The Guardian editorial | The Telegraph | Daily Mail | BBC Devon
BBC World Tonight (5 min) | Times Radio (6 min) | BBC Breakfast
BBC Radio 4 Today (4.5 min) | Sky News (11 min)
The BMJ Care for people with severe ME is “nonexistent,” says coroner in call to action (paywalled)
BBC 'I'm too tired to chew food but still can't get care for my ME'
Trial by Error by David Tuller A summary of the news coverage of the Coroner's report with the observation that "journalists covering the issue have generally accepted at face value the notion that ME is serious disease with potentially fatal consequences".
.............
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
.............
Coming Events
UK Action for ME Genetics Centre of Excellence webinar
24 October, from 2 to 3 pm hosted by AfME, speakers include Prof Chris Ponting, Prof Simon Carding and Dr Audrey Ryback, plus Q&A session.
Details and registration | Thread
...............
Research
ME/CFS research
Neuromuscular Disorders
Conference abstract: 571P Muscular metabolic plasticity in 3D in vitro models against systemic stress factors in ME/CFS and long COVID-19 - Mughal et al.
In vitro muscle tissue was exposed to patients' sera.
"The analyses revealed an upregulation of glycolytic enzymes especially of PDK4, suggesting a switch away from Oxidative Phosphorylation as well as a decline in DRP1, involved in mitochondrial fission."
Abstract | Thread
Journal of Translational Medicine
Immunometabolic changes and potential biomarkers in CFS peripheral immune cells revealed by single-cell RNA sequencing - Sun et al
Used a small sample to study blood cells. "The results support a disease model of immune dysfunction ranging from autoimmunity to immunodeficiency and point to amyloidotic neurodegenerative signaling pathways in the pathogenesis of ME/CFS."
Article | Thread
COVID
Development of an ME/CFS Online Screener - Cathey & Jason
This study describes a new online screener that can be completed by individuals who might like to determine if they meet the current ME/CFS criteria.
Article | Thread
Respiratory Physiology & Neurobiology
Inspiratory muscle training improves autonomic function in myalgic encephalomyelitis/chronic fatigue syndrome and post-acute sequelae of SARS-CoV-2: A pilot study - Edgall et al.
The authors conducted a small clinical trial of inspiratory muscle training in patients with Long Covid and ME/CFS to improve their autonomic function.
Article | Thread
Long Covid research
Clinical Microbiology and Infection
Measurement of circulating viral antigens post-SARS-CoV-2 infection in a multicohort study — Zoe Swank et al.
"The findings of this multicohort study indicate that SARS-CoV-2 antigens can be detected in the blood of a substantial proportion of individuals up to 14 months after infection. While approximately one in five asymptomatic individuals was antigen-positive, roughly half of all individuals reporting ongoing cardiopulmonary, musculoskeletal, and neurologic symptoms were antigen-positive."
Article | Thread
Brain
Quantitative susceptibility mapping at 7 T in COVID-19: brainstem effects and outcome associations — Rua et al.
"Our key findings were that in COVID-19 survivors, multiple regions of the medulla oblongata, pons and midbrain show magnetic resonance susceptibility abnormalities at a median time of 6.5 months from hospital admission. These differences are consistent with a neuroinflammatory response."
Article | Thread
American Journal of Neuroradiology
Macro- and Microstructural White Matter Differences in Neurologic Postacute Sequelae of SARS-CoV-2 Infection — Erin E. O’Connor et al.
"NeuroPASC participants have larger WM volumes than NoCOVID controls and these larger WM volumes are associated with higher PASC scores and greater psychometric deficits. The WM effects may be related to neuroinflammation, with attendant inflammatory microstructural changes and extracellular fluid shifts, a conjecture that can be confirmed with further studies employing free water measures obtained by using multi shell diffusion and myelin water imaging."
Article | Thread
Arteriosclerosis, Thrombosis, and Vascular Biology
COVID-19 Is a Coronary Artery Disease Risk Equivalent and Exhibits a Genetic Interaction With ABO Blood Type — James R. Hilser et al.
"Taken together, our data indicate that the elevated risk of [major adverse cardiac event] in COVID-19 patients shows no apparent signs of attenuation up to nearly 3 years after SARS-CoV-2 infection and suggest that COVID-19 continues to pose a significant public health burden with lingering adverse cardiovascular risk."
Article | Thread
Preprint: MedRxiv
Multi-ancestry GWAS of Long COVID identifies immune-related loci and etiological links to chronic fatigue syndrome, fibromyalgia and depression — Ninad S Chaudhary et al.
"GWAS of Long COVID identified three genome-wide significant loci (HLA-DQA1 and HLA-DQB, ABO, BPTF:KPAN2:C17orf58). Functional analysis of these genes points to underlying immune and thrombo-inflammatory mechanisms."
Article | Thread
JAMA Network Open
Post–COVID-19 Condition Fatigue Outcomes Among Danish Residents — Elisabeth O’Regan et al.
"a 3% increase in self-reported fatigue and 2-fold increase in symptoms of postexertional malaise were found 2 to 18 months after infection" "Preexisting psychiatric conditions did not significantly modify the risk of postacute fatigue symptoms."
Article | Thread
BMC Infectious Diseases
Post-viral symptoms and conditions are more frequent in COVID-19 than influenza, but not more persistent — Tesch et al.
"The main contributions in terms of absolute excess risk came from dyspnea and malaise/ exhaustion, while the highest IRR was observed for chronic fatigue syndrome. After one year, only a minority of the initial patients still suffer from post-COVID condition with a similar pattern of persistence among patients with influenza."
Article | Thread
Women's Health Reports
Endometriosis Patients Have an Increased Risk of Experiencing Long-Covid Symptoms: Results from a Cross-Sectional Multicenter Study — Anna Cirkel et al.
"Subjects with [surgically confirmed endometriosis] had a twofold increased risk of LC (in comparison to subjects with nonconfirmed endometriosis menstrual pain)."
Article | Thread
ERJ Open Research
A new phenotype of patients with post-COVID-19 condition is characterised by a pattern of complex ventilatory dysfunction, neuromuscular disturbance and fatigue symptoms — Fridolin Steinbeis et al.
"Dyspnoea in PCF is characterised by reduced respiratory muscle strength and complex ventilatory dysfunction indicating neuromuscular disturbance as a distinct phenotype among patients with post-COVID-19 condition."
Article | Thread
Brain, Behavior, and Immunity
A review of intravenous immunoglobulin in the treatment of neuroimmune conditions, acute COVID-19 infection, and post-acute sequelae of COVID-19 Syndrome — Morse et al.
"Although IVIG has been proposed as a viable treatment for PASC, present studies exploring its efficacy are lacking."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, articles and advocacy
USA Open Access Government Creating a Research Home for ME/CFS, Long Covid, and others"
Op-ed by Emily Taylor, President and CEO of Solve M.E on the importance of more research into infection-associated chronic conditions and illnesses.
Oped (p. 40-41) l Thread
ContagionLive "Unmasking Long Covid Through Understanding Prevalence and Diagnosis"
A Long COVID roundtable which is a collaborative project from ContagionLive and NeurologyLive.
'In this first episode, clinicians discuss the prevalence of Long COVID, its underestimation due to subclinical cases and recruitment challenges, and stress the importance of thorough history-taking for accurate diagnosis, especially regarding its overlap with ME/CFS..'
Episode l Thread
New Zealand
A feature article in three parts by newsroom on Long Covid in New Zealand.
Part one: 'Long Covid sufferers' quality of life close to MS patients'.
Part two: 'Kiwis with Long Covid speak out'
Part three: 'Government's head in the sand on Long Covid'
Thread
USA ANCC (American Nurses Credentialing Center) and Sigma have rewarded the project "Community Insight to Clinical Care: A Nursing-Led Evidence Based Patient Education Program for ME/CFS" as recipient of the Sigma/ANCC Evidence-Based Practice Implementation Grant. The team behind the project includes Jessica Ask, MSN, RN, Stephanie Grach, MS,MD and Jamie Seltzer, MS, and is led by Nisha Mathews, PhD, MSN, RN. "This nursing-led project addresses the critical need for enhanced patient education in managing ME/CFS, a condition affecting millions globally, particularly in the wake of long COVID-19."
Article l Thread
USA Mount Sinai Opens State-of-the-Art Center for Patients With Complex Conditions Including Lyme Disease and Long COVID
David Putrino comments: "Our Center will be one of the few places in the world embedded in a major clinical institution that's able to provide outstanding care management as well as leading-edge research focused on biological discovery".
Article l Thread
Germany
Christian Zacharias, a German patient with ME/CFS, has published a book titled "Everything is psychosomatic". It covers ME/CFS and Long Covid, the plight of those affected, their fight for research and education, the sabotage by some doctors and the sluggish reaction of politicians.
Article | Thread
.........
UK inquest
Prevention of Future Deaths Report
Following the recent inquest into the death of Maeve Boothby O’Neill, the coroner, Deborah Archer, has written a Regulation 28 Prevention of Future Deaths Report.
Report
The Times Coroner demands urgent action to prevent further deaths from ME
"Deborah Archer, who concluded in the summer that Boothby O’Neill, 27, died of malnutrition as a result of ME, has called on Wes Streeting, NHS officials and other health bodies to take urgent action. She wrote in a Regulation 28 report: “During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”"
Article | Archived version | Thread
Further coverage:
The Times | The Times letter | The Guardian | The Guardian editorial | The Telegraph | Daily Mail | BBC Devon
BBC World Tonight (5 min) | Times Radio (6 min) | BBC Breakfast
BBC Radio 4 Today (4.5 min) | Sky News (11 min)
The BMJ Care for people with severe ME is “nonexistent,” says coroner in call to action (paywalled)
BBC 'I'm too tired to chew food but still can't get care for my ME'
Trial by Error by David Tuller A summary of the news coverage of the Coroner's report with the observation that "journalists covering the issue have generally accepted at face value the notion that ME is serious disease with potentially fatal consequences".
.............
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
.............
Coming Events
UK Action for ME Genetics Centre of Excellence webinar
24 October, from 2 to 3 pm hosted by AfME, speakers include Prof Chris Ponting, Prof Simon Carding and Dr Audrey Ryback, plus Q&A session.
Details and registration | Thread
...............
Research
ME/CFS research
Neuromuscular Disorders
Conference abstract: 571P Muscular metabolic plasticity in 3D in vitro models against systemic stress factors in ME/CFS and long COVID-19 - Mughal et al.
In vitro muscle tissue was exposed to patients' sera.
"The analyses revealed an upregulation of glycolytic enzymes especially of PDK4, suggesting a switch away from Oxidative Phosphorylation as well as a decline in DRP1, involved in mitochondrial fission."
Abstract | Thread
Journal of Translational Medicine
Immunometabolic changes and potential biomarkers in CFS peripheral immune cells revealed by single-cell RNA sequencing - Sun et al
Used a small sample to study blood cells. "The results support a disease model of immune dysfunction ranging from autoimmunity to immunodeficiency and point to amyloidotic neurodegenerative signaling pathways in the pathogenesis of ME/CFS."
Article | Thread
COVID
Development of an ME/CFS Online Screener - Cathey & Jason
This study describes a new online screener that can be completed by individuals who might like to determine if they meet the current ME/CFS criteria.
Article | Thread
Respiratory Physiology & Neurobiology
Inspiratory muscle training improves autonomic function in myalgic encephalomyelitis/chronic fatigue syndrome and post-acute sequelae of SARS-CoV-2: A pilot study - Edgall et al.
The authors conducted a small clinical trial of inspiratory muscle training in patients with Long Covid and ME/CFS to improve their autonomic function.
Article | Thread
Long Covid research
Clinical Microbiology and Infection
Measurement of circulating viral antigens post-SARS-CoV-2 infection in a multicohort study — Zoe Swank et al.
"The findings of this multicohort study indicate that SARS-CoV-2 antigens can be detected in the blood of a substantial proportion of individuals up to 14 months after infection. While approximately one in five asymptomatic individuals was antigen-positive, roughly half of all individuals reporting ongoing cardiopulmonary, musculoskeletal, and neurologic symptoms were antigen-positive."
Article | Thread
Brain
Quantitative susceptibility mapping at 7 T in COVID-19: brainstem effects and outcome associations — Rua et al.
"Our key findings were that in COVID-19 survivors, multiple regions of the medulla oblongata, pons and midbrain show magnetic resonance susceptibility abnormalities at a median time of 6.5 months from hospital admission. These differences are consistent with a neuroinflammatory response."
Article | Thread
American Journal of Neuroradiology
Macro- and Microstructural White Matter Differences in Neurologic Postacute Sequelae of SARS-CoV-2 Infection — Erin E. O’Connor et al.
"NeuroPASC participants have larger WM volumes than NoCOVID controls and these larger WM volumes are associated with higher PASC scores and greater psychometric deficits. The WM effects may be related to neuroinflammation, with attendant inflammatory microstructural changes and extracellular fluid shifts, a conjecture that can be confirmed with further studies employing free water measures obtained by using multi shell diffusion and myelin water imaging."
Article | Thread
Arteriosclerosis, Thrombosis, and Vascular Biology
COVID-19 Is a Coronary Artery Disease Risk Equivalent and Exhibits a Genetic Interaction With ABO Blood Type — James R. Hilser et al.
"Taken together, our data indicate that the elevated risk of [major adverse cardiac event] in COVID-19 patients shows no apparent signs of attenuation up to nearly 3 years after SARS-CoV-2 infection and suggest that COVID-19 continues to pose a significant public health burden with lingering adverse cardiovascular risk."
Article | Thread
Preprint: MedRxiv
Multi-ancestry GWAS of Long COVID identifies immune-related loci and etiological links to chronic fatigue syndrome, fibromyalgia and depression — Ninad S Chaudhary et al.
"GWAS of Long COVID identified three genome-wide significant loci (HLA-DQA1 and HLA-DQB, ABO, BPTF:KPAN2:C17orf58). Functional analysis of these genes points to underlying immune and thrombo-inflammatory mechanisms."
Article | Thread
JAMA Network Open
Post–COVID-19 Condition Fatigue Outcomes Among Danish Residents — Elisabeth O’Regan et al.
"a 3% increase in self-reported fatigue and 2-fold increase in symptoms of postexertional malaise were found 2 to 18 months after infection" "Preexisting psychiatric conditions did not significantly modify the risk of postacute fatigue symptoms."
Article | Thread
BMC Infectious Diseases
Post-viral symptoms and conditions are more frequent in COVID-19 than influenza, but not more persistent — Tesch et al.
"The main contributions in terms of absolute excess risk came from dyspnea and malaise/ exhaustion, while the highest IRR was observed for chronic fatigue syndrome. After one year, only a minority of the initial patients still suffer from post-COVID condition with a similar pattern of persistence among patients with influenza."
Article | Thread
Women's Health Reports
Endometriosis Patients Have an Increased Risk of Experiencing Long-Covid Symptoms: Results from a Cross-Sectional Multicenter Study — Anna Cirkel et al.
"Subjects with [surgically confirmed endometriosis] had a twofold increased risk of LC (in comparison to subjects with nonconfirmed endometriosis menstrual pain)."
Article | Thread
ERJ Open Research
A new phenotype of patients with post-COVID-19 condition is characterised by a pattern of complex ventilatory dysfunction, neuromuscular disturbance and fatigue symptoms — Fridolin Steinbeis et al.
"Dyspnoea in PCF is characterised by reduced respiratory muscle strength and complex ventilatory dysfunction indicating neuromuscular disturbance as a distinct phenotype among patients with post-COVID-19 condition."
Article | Thread
Brain, Behavior, and Immunity
A review of intravenous immunoglobulin in the treatment of neuroimmune conditions, acute COVID-19 infection, and post-acute sequelae of COVID-19 Syndrome — Morse et al.
"Although IVIG has been proposed as a viable treatment for PASC, present studies exploring its efficacy are lacking."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 14th October 2024
News, articles and advocacy
The Guardian Maeve Boothby O´Neill died because of a discredited view of ME. How was this allowed to happen?
An excellent article by George Monbiot on some of the background for the appalling treatment of ME patients. Monbiot comments on Twitter: "This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients."
Article l Tweet l Thread
The Times My daughter died of ME. I had to fight the NHS for answers
Sean O'Neill, father of the late Maeve Boothby O'Neill whose inquest was held recently, writes movingly in diary form about the experience before, during and after the inquest. The grieving parents were refused legal aid, and were left to represent themselves while NHS staff were legally represented.
"Ministers, lawyers and coroners are fond of saying that bereaved families are “at the heart of the inquest process”. That is just not true."
Article | Thread
UK #ThereForME The preventable death of Maeve Boothby O’Neill
A lament for Maeve from a friend who loved her by Bethan Knight.
Warning - upsetting content.
Article | Thread
inews My son has ME - doctors blamed my anxiety
A thorough article on the mistreatment of ME patients. Tina Rodwell and her son Angus, who suffers from ME, tell of their harsh encounters with health care workers. Dr. Binita Kane comments: "Not only are we not taught about ME as doctors, we’re often taught the wrong things".
Article l Thread
UK BACME, ForwardME and #MEActionUK
A representative of #MEAction UK attended the BACME conference and their notes have been shared on the forum.
"MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group."
Thread
UK book British comedian Miranda Hart has published an autobiographical account of living with a diagnosis of Lyme disease and ME. People with ME/CFS are expressing concern in the media and social media about her promotion of unevidenced and potentially harmful pseudoscience.
Thread
...........
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
..........
Useful resources
The ME Association Menopause - Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS
An updated booklet on menopause written by Dr Charles Shepherd. "This booklet provides a valuable explanation of the process of menopause and perimenopause, diagnosis, explaining the different symptoms and information on self management and HRT."
Booklet l Thread
..........
Research news
Videos of lectures from the recent conference in Sweden titled "Circulation in ME/CFS and PostCovid" are now available. The conference was organised by the Swedish ME patient association RME and the Swedish Covid Association. Speakers were Ingrid Gurvin Rekeland, MD, PhD, Resia Pretorius, Professor, PhD, Artur Fedorowski, Professor, MD, David Systrom, Assistant Professor, MD, Suzanne Vernon, PhD, Research Director, Jonas Bergquist, Professor, MD, PhD.
Videos l Thread
ME Research UK The autumn edition of Breakthrough magazine is now available. "includes a look at two newly funded research projects on microclots and neurocognitive impairment, an article from Cort Johnson on severe ME/CFS, an interview with Tina Katsaros from La Trobe University, and much more."
Article | Thread
.........
Research
ME/CFS research
Integrative Medicine Research
Herbal extract (Cervus elaphus Linnaeus, Angelica gigas Nakai, and Astragalus membranaceus Bunge) ameliorates chronic fatigue: A randomized, placebo-controlled, double-blind trial - Ahn et al.
The authors tested a mixture of herbs as an anti-fatigue supplement.
Article | Thread
Discover Education
German medical students’ views regarding Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a cross-sectional survey - Schimmerl et al.
The results of a German survey showed that approximately 50% of medical students had never heard of ME/CFS.
Article | Thread
Long Covid research
Critical Care Explorations
Persistent Fatigue, Weakness, and Aberrant Muscle Mitochondria in Survivors of Critical COVID-19 — Mayer, Kirby P. et al.
"Our findings suggest that metabolic alterations including reduced muscle mitochondrial activity with higher percentage of type 2a/x muscle fibers combined with higher abundances of M2-like macrophages associate with long-term physical impairments after ICU admission for COVID-19."
Article | Thread
Nature Cardiovascular Research
CCL2-mediated endothelial injury drives cardiac dysfunction in long COVID — Thomas et al.
"Disease modeling of cardiac organoids and exposure of human ACE2 transgenic mice to SARS-CoV-2 spike proteins revealed that CCL2-induced oxidative stress promoted post-translational modification of cardiac proteins, leading to cardiac dysfunction. These findings suggest that EC-released cytokines contribute to cardiac dysfunction in long COVID"
Article | Thread
Frontiers in Immunology
Exploring common pathogenic association between Epstein Barr virus infection and long-COVID by integrating RNA-Seq and molecular dynamics simulations — Kanwal and Zhang
"Our findings suggest that these genes are primarily involved in various immune-signaling pathways, including JAK-STAT signaling, interleukin signaling, protein kinase signaling, and toll-like receptor pathways, all of which are connected to LC."
Article | Thread
Translational Neuroscience
Long COVID elevated MMP-9 and release from microglia by SARS-CoV-2 Spike protein — Duraisamy Kempuraj et al.
"MMP-9 was significantly elevated in the serum of long COVID patients compared to healthy controls. Moreover, there was significant release of MMP-9 from a cultured human microglia cell line stimulated by LPS, NT, or Spike protein."
Article | Thread
European Journal of Nuclear Medicine and Molecular Imaging
Persistent dysfunctions of brain metabolic connectivity in long-covid with cognitive symptoms — Martini et al.
"Results showed that neuro-COVID patients can present a significant metabolic brain connectivity alteration in RSN from the acute/subacute to long-term phase. The EXN and ATTN were the most affected networks, showing a compensatory hyperconnectivity in the acute/subacute phase followed by hypoconnectivity in the long-term."
Article | Thread
Brain Communications
Structural and functional brain markers of cognitive impairment in healthcare workers following mild SARS-CoV-2 infection during the original stream — González-Rosa et al.
Non-fatigued patients. "Remarkably, our results also revealed a statistically significant increase (P = 0.020) of juxtacortical [white matter hyperintensities] in mild COVID-19 (37.50%) compared to HC (5.71%)." "despite […] not indicating subjective cognitive complaints, most […] displayed reduced neuropsychological performance"
Article | Thread
NeuroImage
Changes in thalamic functional connectivity in post-Covid patients with and without fatigue — Manuel et al.
"Our study highlights significant differences in resting-state functional connectivity between post-Covid patients with and without fatigue, particularly within motor-associated brain regions"
Article | Thread
The American Journal of Medicine
Post-acute COVID-19 syndrome: prevalence of peripheral microvascular endothelial dysfunction and associations with NT-proBNP dynamics — Marcus Ståhlberg et al.
"our hypothesis generating study demonstrates that peripheral microvascular endothelial dysfunction is prevalent in highly symptomatic PACS patients, detectable over two years after a mild initial COVID-19 infection. We found that microvascular dysfunction is associated with increasing NT-proBNP levels over time"
Article | Thread
The Lancet Regional Health – Western Pacific
Long COVID facts and findings: a large-scale online survey in 74,075 Chinese participants — Shijie Qin et al.
"This survey provides valuable insights into long COVID situation among Chinese residents, with 10%–30% (including repeated infection) reporting symptoms."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, articles and advocacy
The Guardian Maeve Boothby O´Neill died because of a discredited view of ME. How was this allowed to happen?
An excellent article by George Monbiot on some of the background for the appalling treatment of ME patients. Monbiot comments on Twitter: "This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients."
Article l Tweet l Thread
The Times My daughter died of ME. I had to fight the NHS for answers
Sean O'Neill, father of the late Maeve Boothby O'Neill whose inquest was held recently, writes movingly in diary form about the experience before, during and after the inquest. The grieving parents were refused legal aid, and were left to represent themselves while NHS staff were legally represented.
"Ministers, lawyers and coroners are fond of saying that bereaved families are “at the heart of the inquest process”. That is just not true."
Article | Thread
UK #ThereForME The preventable death of Maeve Boothby O’Neill
A lament for Maeve from a friend who loved her by Bethan Knight.
Warning - upsetting content.
Article | Thread
inews My son has ME - doctors blamed my anxiety
A thorough article on the mistreatment of ME patients. Tina Rodwell and her son Angus, who suffers from ME, tell of their harsh encounters with health care workers. Dr. Binita Kane comments: "Not only are we not taught about ME as doctors, we’re often taught the wrong things".
Article l Thread
UK BACME, ForwardME and #MEActionUK
A representative of #MEAction UK attended the BACME conference and their notes have been shared on the forum.
"MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group."
Thread
UK book British comedian Miranda Hart has published an autobiographical account of living with a diagnosis of Lyme disease and ME. People with ME/CFS are expressing concern in the media and social media about her promotion of unevidenced and potentially harmful pseudoscience.
Thread
...........
Crowdfunding
Trial by Error October Crowdfunding Campaign
New round of crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
..........
Useful resources
The ME Association Menopause - Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS
An updated booklet on menopause written by Dr Charles Shepherd. "This booklet provides a valuable explanation of the process of menopause and perimenopause, diagnosis, explaining the different symptoms and information on self management and HRT."
Booklet l Thread
..........
Research news
Videos of lectures from the recent conference in Sweden titled "Circulation in ME/CFS and PostCovid" are now available. The conference was organised by the Swedish ME patient association RME and the Swedish Covid Association. Speakers were Ingrid Gurvin Rekeland, MD, PhD, Resia Pretorius, Professor, PhD, Artur Fedorowski, Professor, MD, David Systrom, Assistant Professor, MD, Suzanne Vernon, PhD, Research Director, Jonas Bergquist, Professor, MD, PhD.
Videos l Thread
ME Research UK The autumn edition of Breakthrough magazine is now available. "includes a look at two newly funded research projects on microclots and neurocognitive impairment, an article from Cort Johnson on severe ME/CFS, an interview with Tina Katsaros from La Trobe University, and much more."
Article | Thread
.........
Research
ME/CFS research
Integrative Medicine Research
Herbal extract (Cervus elaphus Linnaeus, Angelica gigas Nakai, and Astragalus membranaceus Bunge) ameliorates chronic fatigue: A randomized, placebo-controlled, double-blind trial - Ahn et al.
The authors tested a mixture of herbs as an anti-fatigue supplement.
Article | Thread
Discover Education
German medical students’ views regarding Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a cross-sectional survey - Schimmerl et al.
The results of a German survey showed that approximately 50% of medical students had never heard of ME/CFS.
Article | Thread
Long Covid research
Critical Care Explorations
Persistent Fatigue, Weakness, and Aberrant Muscle Mitochondria in Survivors of Critical COVID-19 — Mayer, Kirby P. et al.
"Our findings suggest that metabolic alterations including reduced muscle mitochondrial activity with higher percentage of type 2a/x muscle fibers combined with higher abundances of M2-like macrophages associate with long-term physical impairments after ICU admission for COVID-19."
Article | Thread
Nature Cardiovascular Research
CCL2-mediated endothelial injury drives cardiac dysfunction in long COVID — Thomas et al.
"Disease modeling of cardiac organoids and exposure of human ACE2 transgenic mice to SARS-CoV-2 spike proteins revealed that CCL2-induced oxidative stress promoted post-translational modification of cardiac proteins, leading to cardiac dysfunction. These findings suggest that EC-released cytokines contribute to cardiac dysfunction in long COVID"
Article | Thread
Frontiers in Immunology
Exploring common pathogenic association between Epstein Barr virus infection and long-COVID by integrating RNA-Seq and molecular dynamics simulations — Kanwal and Zhang
"Our findings suggest that these genes are primarily involved in various immune-signaling pathways, including JAK-STAT signaling, interleukin signaling, protein kinase signaling, and toll-like receptor pathways, all of which are connected to LC."
Article | Thread
Translational Neuroscience
Long COVID elevated MMP-9 and release from microglia by SARS-CoV-2 Spike protein — Duraisamy Kempuraj et al.
"MMP-9 was significantly elevated in the serum of long COVID patients compared to healthy controls. Moreover, there was significant release of MMP-9 from a cultured human microglia cell line stimulated by LPS, NT, or Spike protein."
Article | Thread
European Journal of Nuclear Medicine and Molecular Imaging
Persistent dysfunctions of brain metabolic connectivity in long-covid with cognitive symptoms — Martini et al.
"Results showed that neuro-COVID patients can present a significant metabolic brain connectivity alteration in RSN from the acute/subacute to long-term phase. The EXN and ATTN were the most affected networks, showing a compensatory hyperconnectivity in the acute/subacute phase followed by hypoconnectivity in the long-term."
Article | Thread
Brain Communications
Structural and functional brain markers of cognitive impairment in healthcare workers following mild SARS-CoV-2 infection during the original stream — González-Rosa et al.
Non-fatigued patients. "Remarkably, our results also revealed a statistically significant increase (P = 0.020) of juxtacortical [white matter hyperintensities] in mild COVID-19 (37.50%) compared to HC (5.71%)." "despite […] not indicating subjective cognitive complaints, most […] displayed reduced neuropsychological performance"
Article | Thread
NeuroImage
Changes in thalamic functional connectivity in post-Covid patients with and without fatigue — Manuel et al.
"Our study highlights significant differences in resting-state functional connectivity between post-Covid patients with and without fatigue, particularly within motor-associated brain regions"
Article | Thread
The American Journal of Medicine
Post-acute COVID-19 syndrome: prevalence of peripheral microvascular endothelial dysfunction and associations with NT-proBNP dynamics — Marcus Ståhlberg et al.
"our hypothesis generating study demonstrates that peripheral microvascular endothelial dysfunction is prevalent in highly symptomatic PACS patients, detectable over two years after a mild initial COVID-19 infection. We found that microvascular dysfunction is associated with increasing NT-proBNP levels over time"
Article | Thread
The Lancet Regional Health – Western Pacific
Long COVID facts and findings: a large-scale online survey in 74,075 Chinese participants — Shijie Qin et al.
"This survey provides valuable insights into long COVID situation among Chinese residents, with 10%–30% (including repeated infection) reporting symptoms."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Last edited by a moderator:
Week beginning 21st October 2024
Part 1 of 2
News, articles and advocacy
The Conversation Ignored, blamed, and sometimes left to die - a leading expert in ME explains the origins of a modern medical scandal
A beautifully written insight article by Chris Ponting on how ME patients have become outcasts of society, what his friendship with Simon McGrath has taught him and why he became an ME researcher. "My privilege now is to walk ME’s city of stolen futures alongside many people – like Simon – whose lost decades have been spent searching for their disease’s root causes." The article has received a lot of praise by forum members.
Article l Thread
YouTube George Monbiot, David Tuller and Jennie Jacques talking ME/CFS LONG COVID CANCER HIV/AIDS
"Vikings Actress Jennie Jacques speaks with journalists George Monbiot and David Tuller about the mistreatment of people with ME/CFS for decades. And Long Covid to date."
Youtube l Thread
STAT ‘Do no harm’ is hurting 400 million long Covid patients worldwide
Almost five years since the pandemic began, there is not a single FDA-approved treatment.
Julia Moore Vogel and Charlie McCone, both Long Covid sufferers describe the lack of understanding and treatment, and the difficulties of trying off label drugs.
Article | Thread
Brazil Information has been shared on the forum about the general lack of medical knowledge about ME/CFS in Brazil, efforts to increase awareness, and listing some Long Covid research by Brazilian scientists.
Thread
UK The Times ME patient fears for life in NHS row
Tells of Karen Gordon's struggle to get appropriate feeding at home rather than in hospital.
Article | Thread
UK Guardian letters this week have included criticism of George Monbiot's article and of the NICE ME/CFS guideline from PACE trial authors White, Sharpe and Chalder.
Letters | Thread
.........
Trial by Error by David Tuller
PACE Authors Respond to Monbiot Column with Tired Arguments
"In response to Monbiot’s column, the lead PACE investigators (Professors Trudie Chalder, Michael Sharpe, and Peter White) have once again emerged from their cave with a letter defending their honor and promoting their bogus notions. Yet time and science have left these self-important grandees in the dust. They remind me of those ancient Japanese soldiers on obscure islands who didn’t know that World War II was over."
Article l Thread
Professor Chris Ponting Discussing His Recent Article in The Conversation about the Plight of ME/CFS patients
A conversation about Ponting's article (see item above) and "about the friendship with a university mate that prompted his decision to focus on ME research, widespread misogyny in the medical profession, and related issues."
Interview l Thread
Guardian Columnist George Monbiot on the "Bizarre Cult" at the London-Based Science Media Centre
A conversation based on Monbiot's article (see last week's news brief) in the Guardian on some of the background for the failure of ME patients by the UK health care system. "... Monbiot’s main focus in this column was the sorry history of London’s Science Media Centre in promoting egregiously flawed studies about the illness. The SMC, a PR agency masquerading as a purportedly neutral arbiter of scientific research, has been on Monbiot’s radar for decades."
Interview l Thread
...............
Resources
Long Covid Essentials The Sick Times and Long Covid Justice are collaborating in producing 30 printable and shareable resource sheets. Topics include Long Covid basic information, symptoms, treatments and more.
Article | Thread
..............
Crowdfunding
Trial by Error October Crowdfunding Campaign
Final days of the crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
............
Coming events
UK Oxford Saturday, 2 November 14:00 - 16:00 GMT
New research on ME and associated illnesses from Prof Morten and colleagues
In person and online.
Before the main event at 1.45 pm, OMEGA (Oxfordshire ME Group for Action) will host its AGM
Details | Thread
.............
Research news
Canada ICanCME Research Network Secures Continued Funding for the Next 5 Years...through a $2 million catalyst network grant from the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA). The funds will support multiple research projects across the country.
Article | Thread
Austria
A ME/CFS genetics postdoc post available at the Medical University of Vienna. The position is either full-time for 9 months or part-time for 12 months, with a start date in Q1 2025. Initial term, with possibility of extension.
Announcement | Thread
USA Boston Globe What causes long COVID? For nearly half of cases, new research suggests an answer.
"A study from researchers at Mass General Brigham may pave the way for effective treatments" describes an NIH funded study looking at persistent viruses.
Article | Thread
Nature reviews
New eyes on the infectious disease prize
"Jeanne Marrazzo, the director of the NIAID, discusses post-COVID pandemic preparedness, H5N1 avian flu and the tension between infectious disease protection versus profit." Includes a section on Long Covid recognising the need for more research. " ...we just opened the portal for people to submit ideas for drugs that can be tested, whether they're therapies or devices or other interventions."
Article | Thread
Contagion Live Detecting T Cell Dysfunction in Post-Acute Infection Syndromes
'At IDWeek, Nigel McCracken, PhD, COO of Virax Biolabs, discussed their work on developing a diagnostic test for early detection of T cell dysfunction in post-acute infection syndromes like Long COVID, chronic fatigue syndrome, and Lyme disease.'
Article | Thread
...............
For the research section go to the next post.
Part 1 of 2
News, articles and advocacy
The Conversation Ignored, blamed, and sometimes left to die - a leading expert in ME explains the origins of a modern medical scandal
A beautifully written insight article by Chris Ponting on how ME patients have become outcasts of society, what his friendship with Simon McGrath has taught him and why he became an ME researcher. "My privilege now is to walk ME’s city of stolen futures alongside many people – like Simon – whose lost decades have been spent searching for their disease’s root causes." The article has received a lot of praise by forum members.
Article l Thread
YouTube George Monbiot, David Tuller and Jennie Jacques talking ME/CFS LONG COVID CANCER HIV/AIDS
"Vikings Actress Jennie Jacques speaks with journalists George Monbiot and David Tuller about the mistreatment of people with ME/CFS for decades. And Long Covid to date."
Youtube l Thread
STAT ‘Do no harm’ is hurting 400 million long Covid patients worldwide
Almost five years since the pandemic began, there is not a single FDA-approved treatment.
Julia Moore Vogel and Charlie McCone, both Long Covid sufferers describe the lack of understanding and treatment, and the difficulties of trying off label drugs.
Article | Thread
Brazil Information has been shared on the forum about the general lack of medical knowledge about ME/CFS in Brazil, efforts to increase awareness, and listing some Long Covid research by Brazilian scientists.
Thread
UK The Times ME patient fears for life in NHS row
Tells of Karen Gordon's struggle to get appropriate feeding at home rather than in hospital.
Article | Thread
UK Guardian letters this week have included criticism of George Monbiot's article and of the NICE ME/CFS guideline from PACE trial authors White, Sharpe and Chalder.
Letters | Thread
.........
Trial by Error by David Tuller
PACE Authors Respond to Monbiot Column with Tired Arguments
"In response to Monbiot’s column, the lead PACE investigators (Professors Trudie Chalder, Michael Sharpe, and Peter White) have once again emerged from their cave with a letter defending their honor and promoting their bogus notions. Yet time and science have left these self-important grandees in the dust. They remind me of those ancient Japanese soldiers on obscure islands who didn’t know that World War II was over."
Article l Thread
Professor Chris Ponting Discussing His Recent Article in The Conversation about the Plight of ME/CFS patients
A conversation about Ponting's article (see item above) and "about the friendship with a university mate that prompted his decision to focus on ME research, widespread misogyny in the medical profession, and related issues."
Interview l Thread
Guardian Columnist George Monbiot on the "Bizarre Cult" at the London-Based Science Media Centre
A conversation based on Monbiot's article (see last week's news brief) in the Guardian on some of the background for the failure of ME patients by the UK health care system. "... Monbiot’s main focus in this column was the sorry history of London’s Science Media Centre in promoting egregiously flawed studies about the illness. The SMC, a PR agency masquerading as a purportedly neutral arbiter of scientific research, has been on Monbiot’s radar for decades."
Interview l Thread
...............
Resources
Long Covid Essentials The Sick Times and Long Covid Justice are collaborating in producing 30 printable and shareable resource sheets. Topics include Long Covid basic information, symptoms, treatments and more.
Article | Thread
..............
Crowdfunding
Trial by Error October Crowdfunding Campaign
Final days of the crowdfunding to support David Tuller's important work on reporting on ME, ME/CFS, Long Covid, and "Medically Unexplained Symptoms". The goal is to reach $67,000 on UC Berkeley's platform by the end of October to secure Tuller's position for another six months.
Crowdfunding l Thread
............
Coming events
UK Oxford Saturday, 2 November 14:00 - 16:00 GMT
New research on ME and associated illnesses from Prof Morten and colleagues
In person and online.
Before the main event at 1.45 pm, OMEGA (Oxfordshire ME Group for Action) will host its AGM
Details | Thread
.............
Research news
Canada ICanCME Research Network Secures Continued Funding for the Next 5 Years...through a $2 million catalyst network grant from the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA). The funds will support multiple research projects across the country.
Article | Thread
Austria
A ME/CFS genetics postdoc post available at the Medical University of Vienna. The position is either full-time for 9 months or part-time for 12 months, with a start date in Q1 2025. Initial term, with possibility of extension.
Announcement | Thread
USA Boston Globe What causes long COVID? For nearly half of cases, new research suggests an answer.
"A study from researchers at Mass General Brigham may pave the way for effective treatments" describes an NIH funded study looking at persistent viruses.
Article | Thread
Nature reviews
New eyes on the infectious disease prize
"Jeanne Marrazzo, the director of the NIAID, discusses post-COVID pandemic preparedness, H5N1 avian flu and the tension between infectious disease protection versus profit." Includes a section on Long Covid recognising the need for more research. " ...we just opened the portal for people to submit ideas for drugs that can be tested, whether they're therapies or devices or other interventions."
Article | Thread
Contagion Live Detecting T Cell Dysfunction in Post-Acute Infection Syndromes
'At IDWeek, Nigel McCracken, PhD, COO of Virax Biolabs, discussed their work on developing a diagnostic test for early detection of T cell dysfunction in post-acute infection syndromes like Long COVID, chronic fatigue syndrome, and Lyme disease.'
Article | Thread
...............
For the research section go to the next post.
Week beginning 21st October 2024
Part 2 of 2
Research
ME/CFS research
JCI Insight
Immune exhaustion in ME/CFS and long COVID — Natalie Eaton-Fitch et al.
"both the upregulation (KIR2DL5A/B) and downregulation (HLADQA1 and HLADQB1) of genes associated with antigen presentation suggest a heightened immune response, potentially reflecting persistent immune activation following viral infection."
Article | Thread
Journal of Neuroscience Research
Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Hollie Byrne et al.
"In a small cohort of adolescents with ME/ CFS, we observed an anterior–posterior gradient of increased connectivity in the ME/CFS group compared to controls versus decreased connectivity over illness duration within the ME/CFS group."
Article | Thread
Sleep
Genetic variants associated with chronic fatigue syndrome predict population-level fatigue severity and actigraphic measurements — Liu et al.
"We used UK Biobank actigraphy data to characterize differences in physical activity patterns and daily temperature rhythms between participants diagnosed with CFS compared to controls. We then tested if single nucleotide variants (SNVs) previously associated with CFS are also associated with the variation of these actigraphic CFS correlates and/or subjective fatigue symptoms in the general population."
Article | Thread
BMC Neurology
Chronic Overlapping Pain Conditions in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a sample from the Multi-site Clinical Assessment of ME/CFS (MCAM) study - Fall et al. 2024
Data from the MCAM study shows that 48.1% of ME/CFS patients has chronic headache/migraine. Other pain conditions such as fibromyalgia (45%), chronic low back pain (33.1%) and irritable bowel syndrome (31.6%) were also common.
Article | Thread
Journal of Psychosomatic Research
Predictors of treatment response trajectories to cognitive behavioral therapy for chronic fatigue syndrome: A cohort study - Van Oudenhove.
Data from the CFS reference centrum in Leuven Belgium shows that 81% of ME/CFS patients still experienced clinically significant fatigue after treatment with cognitive behavioral therapy (CBT).
Article | Thread
Long Covid research
Nature Communications
Prevalent and persistent new-onset autoantibodies in mild to severe COVID-19 — Jernbom et al.
"In the present work, we have characterized the autoantibody response emerging with COVID-19 using proteome-wide autoantibody screening in longitudinal and independent cohorts."
Article | Thread
The Lancet Microbe
Blood transcriptomic analyses do not support SARS-CoV-2 persistence in patients with post-COVID-19 condition with chronic fatigue syndrome — Rahmati et al.
"in contrast to the previous report findings, we were unable to detect any SARS-CoV-2 viral components in the whole blood samples obtained from our long COVID cohort with debilitating myalgic encephalomyelitis or chronic fatigue syndrome."
Article | Thread
Clinical Nutrition
Analysis of fat oxidation capacity during cardiopulmonary exercise testing indicates long-lasting metabolic disturbance in patients with post-covid-19 syndrome — René Garbsch et al.
"our PCS patients did not show significant differences in respiratory function pointing towards a whole-body deterioration in exercise capacity with a concomitant reduction in FatOx capacity." "These changes result in reduced ATP production while still consuming excess oxygen, leading to increased production of reactive oxygen species, and further damage of cellular components."
Article | Thread
Preprint: MedRxiv
Altered amyloid plasma profile in patients with disabling headaches after SARS-CoV-2 infection and vaccination — Anne Hege Aamodt et al.
"we report higher plasma levels of APP in patients with persistent headache after COVID-19 disease, but not in patients with persistent headache following SARS-CoV-2 vaccination, compared to healthy controls. Remarkably, elevated APP persisted at 6 months follow-up and was associated with accompanying cognitive symptoms. Notably, plasma levels of PZP were higher in both headache groups as compared to controls"
Article | Thread
Expert Reviews in Molecular Medicine
Epigenetic changes in patients with post-acute COVID-19 symptoms (PACS) and long-COVID: A systematic review — Madhura Shekhar Patil et al.
"symptoms of most patients with long-COVID very closely resemble the ones described in another condition – myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." "The similarity is striking. Research on long-COVID can learn a lot from the knowledge obtained from studies on ME/CFS over the past decades."
Article | Thread
The Lancet Regional Health – Europe
Physical, cognitive, and social triggers of symptom fluctuations in people living with long COVID: an intensive longitudinal cohort study — Darren C. Greenwood et al.
"The present study is the first to quantify the immediate time of the activity, and delayed increases later that day or the following day. We have shown that these associations are much the same for physical and cognitive exertions, and extend to effortful social and self-care activities."
Article | Thread
BMJ Global Health
Long Covid: a global health issue – a prospective, cohort study set in four continents — Ekaterina Pazukhina et al.
"Our data show that Long Covid affects populations globally, manifesting similar symptomatology and impact on functioning in both HIC and LMICs. The prevalence was higher in HICs versus LMICs. Although we identified a lower prevalence, the impact of Long Covid may be greater in LMICs if there is a lack of support systems available in HICs."
Article | Thread
Archives of Public Health
Aberrations in medically certified sick leave and primary healthcare consultations in Norway in 2023 compared to pre-COVID-19-pandemic trends — White et al.
"Our findings indicate significant excesses in working person-days lost to medically certified sick leave and primary healthcare consultations in 2023, deviating from the 2010–2019 trends. A sizable proportion of the excesses were due to diseases/symptoms associated with acute and post-acute sequelae of COVID-19, and the magnitudes were large enough to be of societal concern."
Article | Thread
The Lancet Regional Health – Americas
Clinical and functional assessment of SARS-CoV-2 sequelae among young marines – a panel study — Chad K. Porter et al.
"Marines with PASC had significantly decreased physical fitness test scores up to approximately one year post-infection with a three-mile run time that averaged in the 65th percentile of the reference cohort."
Article | Thread
Journal of NeuroVirology
A systematic analysis of neurologic manifestations of Long COVID in Nigeria — Akase et al.
"Our findings reveal the previously unrecognized occurrence of Neuro-PASC among COVID-19 survivors in Nigeria and highlight the need for improved screening and diagnosis of Neuro-PASC in our population."
Article | Thread
Nature npj Digital Medicine
Finding Long-COVID: temporal topic modeling of electronic health records from the N3C and RECOVER programs — O’Neil et al.
"We clustered over 600 million condition diagnoses from 14 million patients available through the National COVID Cohort Collaborative (N3C), generating hundreds of highly detailed clinical phenotypes."
Article | Thread
Frontiers in Neurology
Overlapping conditions in Long COVID at a multisite academic center — Grach et al.
"The goal of this study was to determine whether new or worsening conditions occurred more frequently in patients diagnosed with LC at our clinic compared to COVID patients that did not develop LC."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Part 2 of 2
Research
ME/CFS research
JCI Insight
Immune exhaustion in ME/CFS and long COVID — Natalie Eaton-Fitch et al.
"both the upregulation (KIR2DL5A/B) and downregulation (HLADQA1 and HLADQB1) of genes associated with antigen presentation suggest a heightened immune response, potentially reflecting persistent immune activation following viral infection."
Article | Thread
Journal of Neuroscience Research
Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Hollie Byrne et al.
"In a small cohort of adolescents with ME/ CFS, we observed an anterior–posterior gradient of increased connectivity in the ME/CFS group compared to controls versus decreased connectivity over illness duration within the ME/CFS group."
Article | Thread
Sleep
Genetic variants associated with chronic fatigue syndrome predict population-level fatigue severity and actigraphic measurements — Liu et al.
"We used UK Biobank actigraphy data to characterize differences in physical activity patterns and daily temperature rhythms between participants diagnosed with CFS compared to controls. We then tested if single nucleotide variants (SNVs) previously associated with CFS are also associated with the variation of these actigraphic CFS correlates and/or subjective fatigue symptoms in the general population."
Article | Thread
BMC Neurology
Chronic Overlapping Pain Conditions in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a sample from the Multi-site Clinical Assessment of ME/CFS (MCAM) study - Fall et al. 2024
Data from the MCAM study shows that 48.1% of ME/CFS patients has chronic headache/migraine. Other pain conditions such as fibromyalgia (45%), chronic low back pain (33.1%) and irritable bowel syndrome (31.6%) were also common.
Article | Thread
Journal of Psychosomatic Research
Predictors of treatment response trajectories to cognitive behavioral therapy for chronic fatigue syndrome: A cohort study - Van Oudenhove.
Data from the CFS reference centrum in Leuven Belgium shows that 81% of ME/CFS patients still experienced clinically significant fatigue after treatment with cognitive behavioral therapy (CBT).
Article | Thread
Long Covid research
Nature Communications
Prevalent and persistent new-onset autoantibodies in mild to severe COVID-19 — Jernbom et al.
"In the present work, we have characterized the autoantibody response emerging with COVID-19 using proteome-wide autoantibody screening in longitudinal and independent cohorts."
Article | Thread
The Lancet Microbe
Blood transcriptomic analyses do not support SARS-CoV-2 persistence in patients with post-COVID-19 condition with chronic fatigue syndrome — Rahmati et al.
"in contrast to the previous report findings, we were unable to detect any SARS-CoV-2 viral components in the whole blood samples obtained from our long COVID cohort with debilitating myalgic encephalomyelitis or chronic fatigue syndrome."
Article | Thread
Clinical Nutrition
Analysis of fat oxidation capacity during cardiopulmonary exercise testing indicates long-lasting metabolic disturbance in patients with post-covid-19 syndrome — René Garbsch et al.
"our PCS patients did not show significant differences in respiratory function pointing towards a whole-body deterioration in exercise capacity with a concomitant reduction in FatOx capacity." "These changes result in reduced ATP production while still consuming excess oxygen, leading to increased production of reactive oxygen species, and further damage of cellular components."
Article | Thread
Preprint: MedRxiv
Altered amyloid plasma profile in patients with disabling headaches after SARS-CoV-2 infection and vaccination — Anne Hege Aamodt et al.
"we report higher plasma levels of APP in patients with persistent headache after COVID-19 disease, but not in patients with persistent headache following SARS-CoV-2 vaccination, compared to healthy controls. Remarkably, elevated APP persisted at 6 months follow-up and was associated with accompanying cognitive symptoms. Notably, plasma levels of PZP were higher in both headache groups as compared to controls"
Article | Thread
Expert Reviews in Molecular Medicine
Epigenetic changes in patients with post-acute COVID-19 symptoms (PACS) and long-COVID: A systematic review — Madhura Shekhar Patil et al.
"symptoms of most patients with long-COVID very closely resemble the ones described in another condition – myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." "The similarity is striking. Research on long-COVID can learn a lot from the knowledge obtained from studies on ME/CFS over the past decades."
Article | Thread
The Lancet Regional Health – Europe
Physical, cognitive, and social triggers of symptom fluctuations in people living with long COVID: an intensive longitudinal cohort study — Darren C. Greenwood et al.
"The present study is the first to quantify the immediate time of the activity, and delayed increases later that day or the following day. We have shown that these associations are much the same for physical and cognitive exertions, and extend to effortful social and self-care activities."
Article | Thread
BMJ Global Health
Long Covid: a global health issue – a prospective, cohort study set in four continents — Ekaterina Pazukhina et al.
"Our data show that Long Covid affects populations globally, manifesting similar symptomatology and impact on functioning in both HIC and LMICs. The prevalence was higher in HICs versus LMICs. Although we identified a lower prevalence, the impact of Long Covid may be greater in LMICs if there is a lack of support systems available in HICs."
Article | Thread
Archives of Public Health
Aberrations in medically certified sick leave and primary healthcare consultations in Norway in 2023 compared to pre-COVID-19-pandemic trends — White et al.
"Our findings indicate significant excesses in working person-days lost to medically certified sick leave and primary healthcare consultations in 2023, deviating from the 2010–2019 trends. A sizable proportion of the excesses were due to diseases/symptoms associated with acute and post-acute sequelae of COVID-19, and the magnitudes were large enough to be of societal concern."
Article | Thread
The Lancet Regional Health – Americas
Clinical and functional assessment of SARS-CoV-2 sequelae among young marines – a panel study — Chad K. Porter et al.
"Marines with PASC had significantly decreased physical fitness test scores up to approximately one year post-infection with a three-mile run time that averaged in the 65th percentile of the reference cohort."
Article | Thread
Journal of NeuroVirology
A systematic analysis of neurologic manifestations of Long COVID in Nigeria — Akase et al.
"Our findings reveal the previously unrecognized occurrence of Neuro-PASC among COVID-19 survivors in Nigeria and highlight the need for improved screening and diagnosis of Neuro-PASC in our population."
Article | Thread
Nature npj Digital Medicine
Finding Long-COVID: temporal topic modeling of electronic health records from the N3C and RECOVER programs — O’Neil et al.
"We clustered over 600 million condition diagnoses from 14 million patients available through the National COVID Cohort Collaborative (N3C), generating hundreds of highly detailed clinical phenotypes."
Article | Thread
Frontiers in Neurology
Overlapping conditions in Long COVID at a multisite academic center — Grach et al.
"The goal of this study was to determine whether new or worsening conditions occurred more frequently in patients diagnosed with LC at our clinic compared to COVID patients that did not develop LC."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
Week beginning 28th October 2024
News, articles and advocacy
UK #ThereForME have sent a letter, co-signed by 28 organisations and smaller initiatives, to Layla Moran MP (chair of the UK government Health and Social Care Select Committee). "The letter points to inadequacies, present and historic, in care for people with ME and Long Covid, and calls on the committee to undertake an inquiry."
Article with letter | Tweet | Thread
USA US Representative Ilhan Omar to Introduce Major Long Covid Bill
This US House bill is a companion bill for the one introduced by Bernie Sanders in the US Senate (must pass both House and Senate to become law). It would earmark $10 billion in research for Long Covid, ME/CFS, POTS and other infection-associated chronic conditions.
Press Release | Details | Thread
USA #MEAction has sent an urgent letter to NIH Director Dr. Monica Bertagnolli demanding that the NIH fund the ME/CFS Research Roadmap. They are asking folks to sign on to this letter and circulate this on social media.
Article | Thread
Denmark Sundhedspolitisk Tidsskrift has written about a meeting in Copenhagen with dr. Hans Kluge from WHO and the Danish ME Association. The patient organisation hopes this will be helpful in changing the approach to ME in Denmark.
Vibeke Vind and Esben L. Gustavussen have written an open letter in the same journal to the Danish Minister of Health urging her to act in order to protect Danish ME patients. They point to the recent coroner's report in UK based on the case of Maeve Boothby O´Neill's death.
Article l Open letter l Thread
Aotearoa New Zealand The impact of long Covid will be huge. So why is New Zealand doing nothing about it?
Co-Founder of DysImmune Research Aotearoa Rohan Botica in an opinion piece for The Spinoff.
Article | Thread
Australia Emerge announces GP Training Webinars
Dr Mark Donohoe will give a series of two RACGP CPD approved webinars on his approach to assessment, diagnosis and management of ME/CFS.
Announcement | Register | Thread
Canada The Centre for Effective Practice has published new clinical tools to "support family physicians and primary care nurse practitioners in recognizing, assessing, diagnosing and managing FM, ME/CFS, and POTS in adult patients." The ME/FM Action Network included a brief review of these tools in their Summer 2024 Newsletter.
Website | Thread
USA The Institute for Neuro-Immune Medicine has posted a new video, Legal Advice for Chronic Illness Disability Claims, with advice for people with chronic conditions like ME/CFS, Long Covid, and other neuro-immune disorders who are applying for disability benefits.
Video | Thread
ME Research UK Prevalence of ME/CFS: A growing problem
A series of articles, examines "what is meant by prevalence, what figures over the years have been suggested, and, most importantly, the limitations of the studies that do exist which highlight just how complex the question of prevalence actually is."
Article | Thread
Norway Opinion piece by Guro Kjeilen Jakobsen in the public broadcaster NRK. She has suffered from ME since she was 16 and tells about the cost of fighting for proper care. "Every day is a fight for basic rights and I never get a break."
Opinion piece l Thread
............
Coming events
Bateman Horne Center and Solve M.E. Webinar Series
Severe ME/CFS: Care, Rights, and Research - Legal Rights (Pt. 2 of 4)
Wednesday, November 13
10:00 am Pacific Time / 1:00 PM Eastern Time
Advance registration required, see thread for times in your time zone.
Announcement | Registration | Thread
.............
Research
ME/CFS research
Preprint: Qeios
The Concept of ME/CFS — Jonathan Edwards
"It is time for physicians to take ME/CFS seriously as an unsolved disabling illness, with no presuppositions about causal mechanisms." "The history of medicine is full of situations where illness is entirely misunderstood until some empirical finding makes sense of it. Until then there is a need to get as clear as possible the clinical concept"
Article | Thread
Frontiers in Neuroscience
Cognitive assessment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a cognitive substudy of the multi-site clinical assessment of ME/CFS (MCAM) — Unger et al.
"The [CogState Brief Screening Battery] is sensitive to detect objective deficits in cognitive function in persons with ME/CFS in clinic and remotely over time when speed of performance is used as an outcome measure." "The physical exertion of a single maximal cardiopulmonary exercise test does not further exacerbate the magnitude of cognitive deficit over time."
Article | Thread
The European Journal of Public Health
Utilization and subjective effectiveness of post-COVID-19 therapies in patients with chronic fatigue — M Stolz et al.
"People with PCC and CFS benefit less from active therapies than people with PCC without CFS. Utilization of active therapies worsen symptoms in a relevant minority of 20-30% of CFS patients."
Article | Thread
Health Technology Assessment
Comparison of cognitive behaviour therapy versus activity management, both delivered remotely, to treat paediatric chronic fatigue syndrome/myalgic encephalomyelitis: the UK FITNET-NHS RCT — Crawley et al.
"The additional cost of Fatigue In Teenagers on the interNET in the National Health Service and limited sustained impact mean it is unlikely to be cost-effective."
Article | Thread
ME/CFS Skeptic Blog FITNET-NHS: A summary
A useful summary includes the use of subjective outcomes in an unblinded trial, the primary outcome is not clinically significant, no between group difference in quality of life, and high rates of adverse events and dropouts.
Article | Thread
Long Covid research
Nature Microbiology
Post-acute sequelae of SARS-CoV-2 cardiovascular symptoms are associated with trace-level cytokines that affect cardiomyocyte function — Sinclair et al.
"Trace-level pro-inflammatory cytokines were detected in the plasma from donors with PASC-CVS 18 months post infection using nanotechnology." "Plasma proteomics also demonstrated higher levels of complement and coagulation proteins in the plasma from patients with PASC-CVS."
Article | Thread
Preprint: Research Square
Whole-body visualization of SARS-CoV-2 biodistribution in vivo by immunoPET imaging in non-human primates — Naninck et al.
"Here, we demonstrate the presence of the SARS-CoV-2 antigens by whole body immunoPET using a radiolabeled non-neutralizing monoclonal antibody that specifically targets a preserved epitope of the spike protein of the virus." "We show persistence of the antigen in the lungs and brains of SARS-CoV-2 infected convalescent animals, as well as the distribution of the virus in various organs of acutely infected [cynomolgus macaques]."
Article | Thread
American Journal of Industrial Medicine
Functional disabilities and adverse well-being by COVID-19 and Long COVID history and employment status: 2022 Behavioral Risk Factor Surveillance System — Sharon R. Silver et al.
"In 2022, the prevalence of any disability was 16.8% among those employed for wages and 19.8% among the self‐employed. Among these groups, the most common disability was cognitive, reported by 9.6% of employed respondents, 11.1% of self‐employed respondents, and 23.9% of those out of work for less than a year in 2022 (compared to 7.5%, 9.1%, and 21.4%, respectively in 2019)."
Article | Thread
Respiratory Physiology & Neurobiology
Two-Day Cardiopulmonary Exercise Testing in Long COVID Post-Exertional Malaise Diagnosis — Gattoni et al.
"We found in 15 Long COVID patients, that physiologic and perceptual responses to exercise were not impaired on day 2 of a 2-day CPET protocol, despite the presence of questionnaire-based PEM symptoms in 80% of the population tested. The 2-day CPET protocol does not appear to provide a meaningful tool for the detection of PEM in Long COVID patients."
Article | Thread
Nature Scientific Reports
HbA1c and leukocyte mtDNA levels as major factors associated with post-COVID-19 syndrome in type 2 diabetes patients — Matviichuk et al.
"According to the stepwise multivariate logistic regression analysis, low mtDNA content was associated with PCS development independently of oxygen, glucocorticoid therapy and COVID-19 severity."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon, Bluesky and YouTube
News, articles and advocacy
UK #ThereForME have sent a letter, co-signed by 28 organisations and smaller initiatives, to Layla Moran MP (chair of the UK government Health and Social Care Select Committee). "The letter points to inadequacies, present and historic, in care for people with ME and Long Covid, and calls on the committee to undertake an inquiry."
Article with letter | Tweet | Thread
USA US Representative Ilhan Omar to Introduce Major Long Covid Bill
This US House bill is a companion bill for the one introduced by Bernie Sanders in the US Senate (must pass both House and Senate to become law). It would earmark $10 billion in research for Long Covid, ME/CFS, POTS and other infection-associated chronic conditions.
Press Release | Details | Thread
USA #MEAction has sent an urgent letter to NIH Director Dr. Monica Bertagnolli demanding that the NIH fund the ME/CFS Research Roadmap. They are asking folks to sign on to this letter and circulate this on social media.
Article | Thread
Denmark Sundhedspolitisk Tidsskrift has written about a meeting in Copenhagen with dr. Hans Kluge from WHO and the Danish ME Association. The patient organisation hopes this will be helpful in changing the approach to ME in Denmark.
Vibeke Vind and Esben L. Gustavussen have written an open letter in the same journal to the Danish Minister of Health urging her to act in order to protect Danish ME patients. They point to the recent coroner's report in UK based on the case of Maeve Boothby O´Neill's death.
Article l Open letter l Thread
Aotearoa New Zealand The impact of long Covid will be huge. So why is New Zealand doing nothing about it?
Co-Founder of DysImmune Research Aotearoa Rohan Botica in an opinion piece for The Spinoff.
Article | Thread
Australia Emerge announces GP Training Webinars
Dr Mark Donohoe will give a series of two RACGP CPD approved webinars on his approach to assessment, diagnosis and management of ME/CFS.
Announcement | Register | Thread
Canada The Centre for Effective Practice has published new clinical tools to "support family physicians and primary care nurse practitioners in recognizing, assessing, diagnosing and managing FM, ME/CFS, and POTS in adult patients." The ME/FM Action Network included a brief review of these tools in their Summer 2024 Newsletter.
Website | Thread
USA The Institute for Neuro-Immune Medicine has posted a new video, Legal Advice for Chronic Illness Disability Claims, with advice for people with chronic conditions like ME/CFS, Long Covid, and other neuro-immune disorders who are applying for disability benefits.
Video | Thread
ME Research UK Prevalence of ME/CFS: A growing problem
A series of articles, examines "what is meant by prevalence, what figures over the years have been suggested, and, most importantly, the limitations of the studies that do exist which highlight just how complex the question of prevalence actually is."
Article | Thread
Norway Opinion piece by Guro Kjeilen Jakobsen in the public broadcaster NRK. She has suffered from ME since she was 16 and tells about the cost of fighting for proper care. "Every day is a fight for basic rights and I never get a break."
Opinion piece l Thread
............
Coming events
Bateman Horne Center and Solve M.E. Webinar Series
Severe ME/CFS: Care, Rights, and Research - Legal Rights (Pt. 2 of 4)
Wednesday, November 13
10:00 am Pacific Time / 1:00 PM Eastern Time
Advance registration required, see thread for times in your time zone.
Announcement | Registration | Thread
.............
Research
ME/CFS research
Preprint: Qeios
The Concept of ME/CFS — Jonathan Edwards
"It is time for physicians to take ME/CFS seriously as an unsolved disabling illness, with no presuppositions about causal mechanisms." "The history of medicine is full of situations where illness is entirely misunderstood until some empirical finding makes sense of it. Until then there is a need to get as clear as possible the clinical concept"
Article | Thread
Frontiers in Neuroscience
Cognitive assessment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a cognitive substudy of the multi-site clinical assessment of ME/CFS (MCAM) — Unger et al.
"The [CogState Brief Screening Battery] is sensitive to detect objective deficits in cognitive function in persons with ME/CFS in clinic and remotely over time when speed of performance is used as an outcome measure." "The physical exertion of a single maximal cardiopulmonary exercise test does not further exacerbate the magnitude of cognitive deficit over time."
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The European Journal of Public Health
Utilization and subjective effectiveness of post-COVID-19 therapies in patients with chronic fatigue — M Stolz et al.
"People with PCC and CFS benefit less from active therapies than people with PCC without CFS. Utilization of active therapies worsen symptoms in a relevant minority of 20-30% of CFS patients."
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Health Technology Assessment
Comparison of cognitive behaviour therapy versus activity management, both delivered remotely, to treat paediatric chronic fatigue syndrome/myalgic encephalomyelitis: the UK FITNET-NHS RCT — Crawley et al.
"The additional cost of Fatigue In Teenagers on the interNET in the National Health Service and limited sustained impact mean it is unlikely to be cost-effective."
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ME/CFS Skeptic Blog FITNET-NHS: A summary
A useful summary includes the use of subjective outcomes in an unblinded trial, the primary outcome is not clinically significant, no between group difference in quality of life, and high rates of adverse events and dropouts.
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Long Covid research
Nature Microbiology
Post-acute sequelae of SARS-CoV-2 cardiovascular symptoms are associated with trace-level cytokines that affect cardiomyocyte function — Sinclair et al.
"Trace-level pro-inflammatory cytokines were detected in the plasma from donors with PASC-CVS 18 months post infection using nanotechnology." "Plasma proteomics also demonstrated higher levels of complement and coagulation proteins in the plasma from patients with PASC-CVS."
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Preprint: Research Square
Whole-body visualization of SARS-CoV-2 biodistribution in vivo by immunoPET imaging in non-human primates — Naninck et al.
"Here, we demonstrate the presence of the SARS-CoV-2 antigens by whole body immunoPET using a radiolabeled non-neutralizing monoclonal antibody that specifically targets a preserved epitope of the spike protein of the virus." "We show persistence of the antigen in the lungs and brains of SARS-CoV-2 infected convalescent animals, as well as the distribution of the virus in various organs of acutely infected [cynomolgus macaques]."
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American Journal of Industrial Medicine
Functional disabilities and adverse well-being by COVID-19 and Long COVID history and employment status: 2022 Behavioral Risk Factor Surveillance System — Sharon R. Silver et al.
"In 2022, the prevalence of any disability was 16.8% among those employed for wages and 19.8% among the self‐employed. Among these groups, the most common disability was cognitive, reported by 9.6% of employed respondents, 11.1% of self‐employed respondents, and 23.9% of those out of work for less than a year in 2022 (compared to 7.5%, 9.1%, and 21.4%, respectively in 2019)."
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Respiratory Physiology & Neurobiology
Two-Day Cardiopulmonary Exercise Testing in Long COVID Post-Exertional Malaise Diagnosis — Gattoni et al.
"We found in 15 Long COVID patients, that physiologic and perceptual responses to exercise were not impaired on day 2 of a 2-day CPET protocol, despite the presence of questionnaire-based PEM symptoms in 80% of the population tested. The 2-day CPET protocol does not appear to provide a meaningful tool for the detection of PEM in Long COVID patients."
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Nature Scientific Reports
HbA1c and leukocyte mtDNA levels as major factors associated with post-COVID-19 syndrome in type 2 diabetes patients — Matviichuk et al.
"According to the stepwise multivariate logistic regression analysis, low mtDNA content was associated with PCS development independently of oxygen, glucocorticoid therapy and COVID-19 severity."
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