-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
News in Brief - February 2024
- Thread starter S4ME News
- Start date
-
- Tags
- news news in brief
Week beginning 29th January 2024
News, advocacy and media
The Netherlands
A Dutch petition asks supporters to vote for post-COVID specialist clinics in the Netherlands. It closes on 13/02/2024 and will be handed to the House of Representatives.
Petition | Thread
Science for ME petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" now has over 10,000 supporters, nearly 600 of them adding comments addressed to Cochrane sharing views and experiences of harm from exercise therapy. The petition remains open while Cochrane retains a review supporting exercise therapy.
Petition | Thread
UK BBC More on responses to the Dragons' Den program and the company it promoted selling quack treatment.
The Mirror: 'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace' by Ellie Fry quotes Clare Norton, mother of Merryn Crofts who tragically died of ME/CFS in 2017. In another article the Mirror reports that Advertising standards is taking action.
A video by Dr Ben Miles, a research scientist who helps scientists find financial backers, titled "The Problem with Dragons' Den Investing in Pseudoscience", says "When you prey upon investors hopes that don't know any better you go to prison. When you prey upon customers hopes that don't know any better you go on dragons den".
Charlotte Blease's article in The Critic says: "Pseudoscience exacerbates the burden of disease - Victims of ME deserve better than dopey Dragons and ear seeds"
Mirror | Mirror | Video | The Critic | Thread
Denmark Mads Joakim Rasmussen is an award winning photojournalist who has portrayed eight ME patients in his project "ME - Myalgisk Encefalopati". The portraits are presented with a short presentation of each person, a quote from them and a picture from before they got ill.
Website l Thread
New Zealand 1News has a segment called "Good Sorts" where they've presented Wendy Mathews who is bed bound with ME. She has created the charity "Rest Assured" who brings food and support to others who are housebound with ME, CFS or fibromyalgia.
Segment l Thread
............
Useful resources
Physios for ME
"We're pleased to announce a new resource – a downloadable one-sheet titled “How to work safely with people who have ME/CFS”.
This is aimed at physios who do not work in specialist ME services, to help them understand how to adapt their practice to work safely with people who have ME."
An excellent printable resource for people with ME/CFS to share with physios and other health care workers.
Article | Thread
...............
Research news and commentary
Jarred Younger Neuroinflammation, Pain, and Fatigue - Introduction
In this short video Dr. Younger, an American researcher, announces his plans for a series of weekly videos to discuss "the newest brain imaging and clinical trial studies."
Video | Thread
NIH - NINDS is seeking feedback on ME/CFS Research Roadmap Priorities
All stakeholders are encouraged to comment. Comments will be public so please do not include any personal and/or medical information. The public comment period is scheduled to close on March 8, 2024. See thread for tips on how to use the website.
Website | Thread
............
Research
ME/CFS research
University of Portsmouth, USA
PhD thesis: From Function to Physiology and Back in Adults with [ME/CFS] by Dr. Todd Eldon Davenport
"The presented thesis contains data from eleven publications pertaining to ME/CFS and PEM since 2012. [...] People living with ME/CFS have significantly lower V̇ O2 and work rate measurements at the VAT than deconditioned individuals. Medical and legal practise guidelines were composed and interventions (e.g., 2 IV saline and HRM) were evaluated based on foundational information of the underlying physiology of PEM/PESE presented in this thesis."
Thesis | Thread
PLOS One
Lipid metabolism and functional somatic disorders in the general population. The DanFunD study - Jørgensen, Fink et al
Using data from a regional population study, the authors looked for associations between levels of various lipids and what they called functional somatic disorders and found some variations. They include CF (chronic fatigue) diagnosed using the Chalder Fatigue questionnaire, but appear to assume the results are relevant to CFS.
Article | Thread
Frontiers in Neuroscience
Editorial: Fatigue: physiology and pathology - Kujawski et al.
This editorial by Sławomir Kujawski, Paweł Zalewski, Lynette Hodges, Jo Nijs and Julia Newton introduces several papers published in Frontiers in Neuroscience including several on ME/CFS.
Article | Thread
Nursing Inquiry
A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence - Krabbe et al.
The authors argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.
Article | Thread
Journal of Health Psychology
Psychometric evaluation of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) among adults with Long COVID, ME/CFS, and healthy controls: A machine learning approach - McGarrigle et al.
The authors "generated a series of random forest machine learning algorithms to evaluate the psychometric properties of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) in classifying large groups of adults with Long COVID, ME/CFS (without Long COVID), and healthy controls."
Article | Thread
International Journal of Molecular Sciences
Functional and Morphological Differences of Muscle Mitochondria in Chronic Fatigue Syndrome and Post-COVID Syndrome - Bizjak et al.
"Both CFS and PCS exhibit increased fatigue and impaired mitochondrial function, but the progressed pathological morphological changes in CFS suggest structural changes due to prolonged inactivity or unknown molecular causes. Instead, the significantly lower complex I activity in PCS suggests probably direct virus-induced alterations."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Videoconference-delivered group cognitive behavioral stress management for ME/CFS patients who present with severe PEM: a randomized controlled trial - May et al.
The authors analyse the results from a randomized controlled trial comparing 10-weeks of videoconference-delivered group cognitive behavioral stress management to a 10-week Health Information active control group for patients with ME/CFS.
Article | Thread
Scientific Reports
Mismatch between subjective and objective dysautonomia - Novak et al.
The authors tested objective and subjective measures of dysautonomia in a large cohort of 2627 patients, including 95 ME/CFS patients, and found no significant correlation between the two. They conclude that "the use of autonomic questionnaires as a replacement of autonomic testing cannot be recommended."
Article | Thread
MedArchiv (preprint)
Unequal access to diagnosis of myalgic encephalomyelitis in England - Ponting & Samms
The authors used Hospital Episode Statistics data to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3; 'Postviral fatigue syndrome'). White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS than others.
Article | Thread
Long Covid research
Proceedings of the National Academy of Sciences
Viral afterlife: SARS-CoV-2 as a reservoir of immunomimetic peptides that reassemble into proinflammatory supramolecular complexes — Zhang et al.
“In this work, we consider the possibility that proteolytic destruction of the virus by the immune system is not necessarily the endpoint for host viral clearance in COVID-19” “Taken together, the results presented here suggest an unanticipated mode of amplified immune activation for healthy, uninfected cells without direct infection by SARS-CoV-2, in addition to inflammation resulting from direct infection.”
Article | Thread
European Journal of Pediatrics
Long COVID in pediatrics—epidemiology, diagnosis, and management — Toepfner et al.
“Pre-pandemic ME/CFS was identified as the most common cause of long-term school absence. However, the effect of PASC on school performance is not well studied yet. Remarkably, a recent survey from Germany reported a 38% increase of general school absenteeism compared to pre-pandemic years, in Belgium school absenteeism in secondary education also increased by 56% between 2020/2021 and 2021/2022.”
Article | Thread
Nature Pediatric Research
International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward — Brackel et al.
“This analysis underscores that PPCC care programs lack consensus concerning diagnostics and therapeutics, highlighting a need for further research into etiology, and treatments to inform evidence based guidelines and organization of care.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
The Netherlands
A Dutch petition asks supporters to vote for post-COVID specialist clinics in the Netherlands. It closes on 13/02/2024 and will be handed to the House of Representatives.
Petition | Thread
Science for ME petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" now has over 10,000 supporters, nearly 600 of them adding comments addressed to Cochrane sharing views and experiences of harm from exercise therapy. The petition remains open while Cochrane retains a review supporting exercise therapy.
Petition | Thread
UK BBC More on responses to the Dragons' Den program and the company it promoted selling quack treatment.
The Mirror: 'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace' by Ellie Fry quotes Clare Norton, mother of Merryn Crofts who tragically died of ME/CFS in 2017. In another article the Mirror reports that Advertising standards is taking action.
A video by Dr Ben Miles, a research scientist who helps scientists find financial backers, titled "The Problem with Dragons' Den Investing in Pseudoscience", says "When you prey upon investors hopes that don't know any better you go to prison. When you prey upon customers hopes that don't know any better you go on dragons den".
Charlotte Blease's article in The Critic says: "Pseudoscience exacerbates the burden of disease - Victims of ME deserve better than dopey Dragons and ear seeds"
Mirror | Mirror | Video | The Critic | Thread
Denmark Mads Joakim Rasmussen is an award winning photojournalist who has portrayed eight ME patients in his project "ME - Myalgisk Encefalopati". The portraits are presented with a short presentation of each person, a quote from them and a picture from before they got ill.
Website l Thread
New Zealand 1News has a segment called "Good Sorts" where they've presented Wendy Mathews who is bed bound with ME. She has created the charity "Rest Assured" who brings food and support to others who are housebound with ME, CFS or fibromyalgia.
Segment l Thread
............
Useful resources
Physios for ME
"We're pleased to announce a new resource – a downloadable one-sheet titled “How to work safely with people who have ME/CFS”.
This is aimed at physios who do not work in specialist ME services, to help them understand how to adapt their practice to work safely with people who have ME."
An excellent printable resource for people with ME/CFS to share with physios and other health care workers.
Article | Thread
...............
Research news and commentary
Jarred Younger Neuroinflammation, Pain, and Fatigue - Introduction
In this short video Dr. Younger, an American researcher, announces his plans for a series of weekly videos to discuss "the newest brain imaging and clinical trial studies."
Video | Thread
NIH - NINDS is seeking feedback on ME/CFS Research Roadmap Priorities
All stakeholders are encouraged to comment. Comments will be public so please do not include any personal and/or medical information. The public comment period is scheduled to close on March 8, 2024. See thread for tips on how to use the website.
Website | Thread
............
Research
ME/CFS research
University of Portsmouth, USA
PhD thesis: From Function to Physiology and Back in Adults with [ME/CFS] by Dr. Todd Eldon Davenport
"The presented thesis contains data from eleven publications pertaining to ME/CFS and PEM since 2012. [...] People living with ME/CFS have significantly lower V̇ O2 and work rate measurements at the VAT than deconditioned individuals. Medical and legal practise guidelines were composed and interventions (e.g., 2 IV saline and HRM) were evaluated based on foundational information of the underlying physiology of PEM/PESE presented in this thesis."
Thesis | Thread
PLOS One
Lipid metabolism and functional somatic disorders in the general population. The DanFunD study - Jørgensen, Fink et al
Using data from a regional population study, the authors looked for associations between levels of various lipids and what they called functional somatic disorders and found some variations. They include CF (chronic fatigue) diagnosed using the Chalder Fatigue questionnaire, but appear to assume the results are relevant to CFS.
Article | Thread
Frontiers in Neuroscience
Editorial: Fatigue: physiology and pathology - Kujawski et al.
This editorial by Sławomir Kujawski, Paweł Zalewski, Lynette Hodges, Jo Nijs and Julia Newton introduces several papers published in Frontiers in Neuroscience including several on ME/CFS.
Article | Thread
Nursing Inquiry
A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence - Krabbe et al.
The authors argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.
Article | Thread
Journal of Health Psychology
Psychometric evaluation of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) among adults with Long COVID, ME/CFS, and healthy controls: A machine learning approach - McGarrigle et al.
The authors "generated a series of random forest machine learning algorithms to evaluate the psychometric properties of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) in classifying large groups of adults with Long COVID, ME/CFS (without Long COVID), and healthy controls."
Article | Thread
International Journal of Molecular Sciences
Functional and Morphological Differences of Muscle Mitochondria in Chronic Fatigue Syndrome and Post-COVID Syndrome - Bizjak et al.
"Both CFS and PCS exhibit increased fatigue and impaired mitochondrial function, but the progressed pathological morphological changes in CFS suggest structural changes due to prolonged inactivity or unknown molecular causes. Instead, the significantly lower complex I activity in PCS suggests probably direct virus-induced alterations."
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Videoconference-delivered group cognitive behavioral stress management for ME/CFS patients who present with severe PEM: a randomized controlled trial - May et al.
The authors analyse the results from a randomized controlled trial comparing 10-weeks of videoconference-delivered group cognitive behavioral stress management to a 10-week Health Information active control group for patients with ME/CFS.
Article | Thread
Scientific Reports
Mismatch between subjective and objective dysautonomia - Novak et al.
The authors tested objective and subjective measures of dysautonomia in a large cohort of 2627 patients, including 95 ME/CFS patients, and found no significant correlation between the two. They conclude that "the use of autonomic questionnaires as a replacement of autonomic testing cannot be recommended."
Article | Thread
MedArchiv (preprint)
Unequal access to diagnosis of myalgic encephalomyelitis in England - Ponting & Samms
The authors used Hospital Episode Statistics data to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3; 'Postviral fatigue syndrome'). White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS than others.
Article | Thread
Long Covid research
Proceedings of the National Academy of Sciences
Viral afterlife: SARS-CoV-2 as a reservoir of immunomimetic peptides that reassemble into proinflammatory supramolecular complexes — Zhang et al.
“In this work, we consider the possibility that proteolytic destruction of the virus by the immune system is not necessarily the endpoint for host viral clearance in COVID-19” “Taken together, the results presented here suggest an unanticipated mode of amplified immune activation for healthy, uninfected cells without direct infection by SARS-CoV-2, in addition to inflammation resulting from direct infection.”
Article | Thread
European Journal of Pediatrics
Long COVID in pediatrics—epidemiology, diagnosis, and management — Toepfner et al.
“Pre-pandemic ME/CFS was identified as the most common cause of long-term school absence. However, the effect of PASC on school performance is not well studied yet. Remarkably, a recent survey from Germany reported a 38% increase of general school absenteeism compared to pre-pandemic years, in Belgium school absenteeism in secondary education also increased by 56% between 2020/2021 and 2021/2022.”
Article | Thread
Nature Pediatric Research
International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward — Brackel et al.
“This analysis underscores that PPCC care programs lack consensus concerning diagnostics and therapeutics, highlighting a need for further research into etiology, and treatments to inform evidence based guidelines and organization of care.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 5th February 2024
News, advocacy and media
World ME Alliance has announced a theme/hashtag for World ME Day 12th May 2024: "Become a #GlobalVoiceForME." The website has tools to help folks post on social media and make custom posters. There's also an ME fact sheet, videos, and images that can be shared.
Website | Thread
Aotearoa New Zealand ANZMES
"This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME."
Announcement | Thread
The Tyee Why So Quiet about Long COVID?
About the high prevalence of long Covid and information presented by researcher Al-Aly at his testimony during the recent U.S. Senate hearing about the topic. “If we learn one thing from this pandemic, we must recognize that ‘pandemics disable people’ — that is acute infections can lead to chronic disabling disease.”
Article l Thread
Bay Area Lyme Foundation Long Covid: What We Have Learned About Chronic Illness from the Front Lines
Host Dana Parish interviews David Putrino (about 1 1/2 hours long).
Video | Thread
Katie Johnstone blog (ME/CFS Medical Education Campaign UK)
"The British Association of Clinicians in ME/CFS (BACME) doesn't understand post-exertional malaise. - They think it's a type of fatigue.”
Article | Thread
A Life Hidden by Naomi Whittingham Why the pandemic isn't over for me
About navigating in the pandemic when you have an underlying condition making you more vulnerable for the infection. "In the early days of the pandemic we were known as the clinically vulnerable: now we are rarely spoken about at all. I cannot remember the last time I saw the mainstream media address our existence – it is as though we disappeared in 2022 when the final restrictions were lifted and society returned to normal. In reality, we are still here."
Article l Thread
#MEAction has restructured their volunteer program. There are now separate working groups "to ensure your skills are being put to good use."
Announcement | Thread
The Skeptic
Dragons’ Den’s uncritical promotion of ear seeds is an insult to ME/cfs patients like me - Sorrel Kinton
Excellent article placing profiteering from quack treatments to people with ME/CFS, and the BBC program's promotion of quackery, in the wider context including the history, lack of any effective treatment and very low research funding.
Article | Thread
.............
Useful resources
UK Royal College of Anaesthetists ME/CFS and anaesthesia
In association with the ME Association the College has produced an information leaflet for people with ME/CFS undergoing surgery with general anaesthesia.
ME Association Announcement | Download Leaflet | Thread
..................
Research news and commentary
Netherlands
The recording of The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium first symposium on 21 January 2024 has been made available online.
Video | Thread
OMF The Open Medicine Foundation newsletter research summary refers to
Dr. Jonas Bergquist's recently published research on Tryptophan levels in human plasma, and his plan to use this method to investigate the Kynurenine trap model for ME/CFS.
Thread
UK Physios for ME on Twitter: Now recruiting: A pilot study to explore the everyday levels of lactic acid in people with M.E and healthy controls.
Tweet | Thread
.............
Coming events
Portugal
An International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID will take place on April 3 and 4, 2024, in Lisbon, at the premises of FLAD – Luso-American Development Foundation. You can attend in person (places are limited) or participate online via streaming.
Article | Thread
Bateman Horne Center - Free Online Support Groups
Thursday, February 16, 1:00 - 2:00 PM Mountain Time
Topic: Minority Survival Skills: Facing Internal and External Ableism
Tuesday, February 20, 1:00 - 2:00 PM Mountain Time
Topic: Moving from Shame to Pride: Moving Away from Inappropriate Guilt
See thread for times in your time zone.
Event Calendar | Thread
#MEAction - Caregiver Support Call
Saturday, February 17, 3:30 - 4:30 PM Eastern time
For caregivers of people with chronic diseases such as ME or Long COVID.
See thread for time in your time zone.
Announcement | Thread
..............
Research
ME/CFS research
Lancet: eClinicalMedicine
How does post COVID differ from other post-viral conditions in childhood and adolescence (0–20 years old)? A systematic review — Chiara Minotti et al.
“The pattern of long-lasting symptoms among children, including fatigue, cough, thoracic pain, dyspnea, palpitations, headache, altered smell/taste, myalgia/ arthralgia, difficulty concentrating, diarrhea, and abdominal pain, was reproducible among the retrieved studies, and this may demonstrate these are defining symptoms of post COVID, similarly to studies on adults.”
Article | Thread
Long Covid research
Vascular Medicine
Dysregulated platelet function in patients with postacute sequelae of COVID-19 — Anu Aggarwal et al.
“The most significant finding in our study is that platelet-deplete plasma in patients with PASC ‘primes’ and markedly activates healthy, washed platelets through every receptor signaling pathway evaluated.”
Article | Thread
European Respiratory Journal
Cluster Analysis to Identify Long COVID Phenotypes Using 129Xe Magnetic Resonance Imaging: A Multi-centre Evaluation — Rachel L Eddy et al.
“Low RBC/Mem in Cluster2 in the absence of airway or parenchymal abnormalities adds to the growing evidence of post-COVID microvascular abnormalities such as pulmonary capillary inflammation, vasoconstrictive remodeling or thrombosis that inhibit transfer of gas.”
Article | Thread
Preprint: Research Square
Neuroinflammatory imaging markers in white matter: insights into the cerebral consequences of post-acute sequelae of COVID-19 PASC — Clouston et al.
“Whole-brain white matter and cortical gray matter health were assessed using multi-shell diffusion tensor imaging.” “This study identified changes across measures of white and gray matter connectivity, neuroinflammation, and cerebral atrophy that were interrelated and associated with differences in symptoms of PASC.”
Article | Thread
Frontiers in Immunology
Associations between post-acute sequelae of SARS-CoV-2, COVID-19 vaccination and HIV infection: a United States cohort study — Yendewa et al.
“In this study from a large health network in the United States, we showed that compared to the general population, HIV infection was significantly associated with increased odds of experiencing PASC” “We further showed COVID-19 vaccination had a protective effect against the development of new-onset conditions among PWH.”
Article | Thread
Journal of Clinical Immunology
High Prevalence of Long COVID in Common Variable Immunodeficiency: An Italian Multicentric Study — Villa et al.
“in this multicenter observational cohort study, we demonstrated that CVID patients present an increased prevalence of LC when compared to the general population.”
Article | Thread
Computational and Structural Biotechnology Journal
Assessing the effect of selective serotonin reuptake inhibitors in the prevention of post-acute sequelae of COVID-19 — Hythem Sidky et al.
“A 29% reduction in the RR of PASC (0.704 [95% CI, 0.58–0.85]) was seen among patients who received an S1R agonist SSRI compared to SSRI unexposed patients and a 21% reduction in the RR of PASC was seen among those receiving an SSRI without S1R agonist activity (0.79 [95% CI, 0.67 -0.93]).”
Article | Thread
Pediatrics
Postacute Sequelae of SARS-CoV-2 in Children — Rao et al.
“This state-of-the-art narrative review provides a summary of our current knowledge about PASC in children” “Three years after the start of the pandemic, we are developing an enhanced understanding of the varied presentations of PASC in children, as well as risk factors and trajectory. However, much remains yet to be discovered.”
Article | Thread
BMJ
Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial — Gordon McGregor et al.
This study has received significant attention on social media, suggesting that exercise therapy is beneficial in LC. The study looked at previously hospitalised patients, excluded PEM, was unblinded and used subjective outcomes. Even with uncontrolled bias the outcomes for physical improvement showed minimal effect sizes.
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
World ME Alliance has announced a theme/hashtag for World ME Day 12th May 2024: "Become a #GlobalVoiceForME." The website has tools to help folks post on social media and make custom posters. There's also an ME fact sheet, videos, and images that can be shared.
Website | Thread
Aotearoa New Zealand ANZMES
"This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME."
Announcement | Thread
The Tyee Why So Quiet about Long COVID?
About the high prevalence of long Covid and information presented by researcher Al-Aly at his testimony during the recent U.S. Senate hearing about the topic. “If we learn one thing from this pandemic, we must recognize that ‘pandemics disable people’ — that is acute infections can lead to chronic disabling disease.”
Article l Thread
Bay Area Lyme Foundation Long Covid: What We Have Learned About Chronic Illness from the Front Lines
Host Dana Parish interviews David Putrino (about 1 1/2 hours long).
Video | Thread
Katie Johnstone blog (ME/CFS Medical Education Campaign UK)
"The British Association of Clinicians in ME/CFS (BACME) doesn't understand post-exertional malaise. - They think it's a type of fatigue.”
Article | Thread
A Life Hidden by Naomi Whittingham Why the pandemic isn't over for me
About navigating in the pandemic when you have an underlying condition making you more vulnerable for the infection. "In the early days of the pandemic we were known as the clinically vulnerable: now we are rarely spoken about at all. I cannot remember the last time I saw the mainstream media address our existence – it is as though we disappeared in 2022 when the final restrictions were lifted and society returned to normal. In reality, we are still here."
Article l Thread
#MEAction has restructured their volunteer program. There are now separate working groups "to ensure your skills are being put to good use."
Announcement | Thread
The Skeptic
Dragons’ Den’s uncritical promotion of ear seeds is an insult to ME/cfs patients like me - Sorrel Kinton
Excellent article placing profiteering from quack treatments to people with ME/CFS, and the BBC program's promotion of quackery, in the wider context including the history, lack of any effective treatment and very low research funding.
Article | Thread
.............
Useful resources
UK Royal College of Anaesthetists ME/CFS and anaesthesia
In association with the ME Association the College has produced an information leaflet for people with ME/CFS undergoing surgery with general anaesthesia.
ME Association Announcement | Download Leaflet | Thread
..................
Research news and commentary
Netherlands
The recording of The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium first symposium on 21 January 2024 has been made available online.
Video | Thread
OMF The Open Medicine Foundation newsletter research summary refers to
Dr. Jonas Bergquist's recently published research on Tryptophan levels in human plasma, and his plan to use this method to investigate the Kynurenine trap model for ME/CFS.
Thread
UK Physios for ME on Twitter: Now recruiting: A pilot study to explore the everyday levels of lactic acid in people with M.E and healthy controls.
Tweet | Thread
.............
Coming events
Portugal
An International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID will take place on April 3 and 4, 2024, in Lisbon, at the premises of FLAD – Luso-American Development Foundation. You can attend in person (places are limited) or participate online via streaming.
Article | Thread
Bateman Horne Center - Free Online Support Groups
Thursday, February 16, 1:00 - 2:00 PM Mountain Time
Topic: Minority Survival Skills: Facing Internal and External Ableism
Tuesday, February 20, 1:00 - 2:00 PM Mountain Time
Topic: Moving from Shame to Pride: Moving Away from Inappropriate Guilt
See thread for times in your time zone.
Event Calendar | Thread
#MEAction - Caregiver Support Call
Saturday, February 17, 3:30 - 4:30 PM Eastern time
For caregivers of people with chronic diseases such as ME or Long COVID.
See thread for time in your time zone.
Announcement | Thread
..............
Research
ME/CFS research
Lancet: eClinicalMedicine
How does post COVID differ from other post-viral conditions in childhood and adolescence (0–20 years old)? A systematic review — Chiara Minotti et al.
“The pattern of long-lasting symptoms among children, including fatigue, cough, thoracic pain, dyspnea, palpitations, headache, altered smell/taste, myalgia/ arthralgia, difficulty concentrating, diarrhea, and abdominal pain, was reproducible among the retrieved studies, and this may demonstrate these are defining symptoms of post COVID, similarly to studies on adults.”
Article | Thread
Long Covid research
Vascular Medicine
Dysregulated platelet function in patients with postacute sequelae of COVID-19 — Anu Aggarwal et al.
“The most significant finding in our study is that platelet-deplete plasma in patients with PASC ‘primes’ and markedly activates healthy, washed platelets through every receptor signaling pathway evaluated.”
Article | Thread
European Respiratory Journal
Cluster Analysis to Identify Long COVID Phenotypes Using 129Xe Magnetic Resonance Imaging: A Multi-centre Evaluation — Rachel L Eddy et al.
“Low RBC/Mem in Cluster2 in the absence of airway or parenchymal abnormalities adds to the growing evidence of post-COVID microvascular abnormalities such as pulmonary capillary inflammation, vasoconstrictive remodeling or thrombosis that inhibit transfer of gas.”
Article | Thread
Preprint: Research Square
Neuroinflammatory imaging markers in white matter: insights into the cerebral consequences of post-acute sequelae of COVID-19 PASC — Clouston et al.
“Whole-brain white matter and cortical gray matter health were assessed using multi-shell diffusion tensor imaging.” “This study identified changes across measures of white and gray matter connectivity, neuroinflammation, and cerebral atrophy that were interrelated and associated with differences in symptoms of PASC.”
Article | Thread
Frontiers in Immunology
Associations between post-acute sequelae of SARS-CoV-2, COVID-19 vaccination and HIV infection: a United States cohort study — Yendewa et al.
“In this study from a large health network in the United States, we showed that compared to the general population, HIV infection was significantly associated with increased odds of experiencing PASC” “We further showed COVID-19 vaccination had a protective effect against the development of new-onset conditions among PWH.”
Article | Thread
Journal of Clinical Immunology
High Prevalence of Long COVID in Common Variable Immunodeficiency: An Italian Multicentric Study — Villa et al.
“in this multicenter observational cohort study, we demonstrated that CVID patients present an increased prevalence of LC when compared to the general population.”
Article | Thread
Computational and Structural Biotechnology Journal
Assessing the effect of selective serotonin reuptake inhibitors in the prevention of post-acute sequelae of COVID-19 — Hythem Sidky et al.
“A 29% reduction in the RR of PASC (0.704 [95% CI, 0.58–0.85]) was seen among patients who received an S1R agonist SSRI compared to SSRI unexposed patients and a 21% reduction in the RR of PASC was seen among those receiving an SSRI without S1R agonist activity (0.79 [95% CI, 0.67 -0.93]).”
Article | Thread
Pediatrics
Postacute Sequelae of SARS-CoV-2 in Children — Rao et al.
“This state-of-the-art narrative review provides a summary of our current knowledge about PASC in children” “Three years after the start of the pandemic, we are developing an enhanced understanding of the varied presentations of PASC in children, as well as risk factors and trajectory. However, much remains yet to be discovered.”
Article | Thread
BMJ
Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial — Gordon McGregor et al.
This study has received significant attention on social media, suggesting that exercise therapy is beneficial in LC. The study looked at previously hospitalised patients, excluded PEM, was unblinded and used subjective outcomes. Even with uncontrolled bias the outcomes for physical improvement showed minimal effect sizes.
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 12th February 2024
News, advocacy and media
The Netherlands
On February 15, the Dutch Parliament voted on several amendments including one for €4,4 million of additional funding for ME/CFS research and one on €27 million for the establishment of Long Covid clinics. Both amendments were accepted.
Article | Thread
Germany
The ME/CFS Research Foundation has created a research register. It offers comprehensive information on MECFS projects, researchers, and publications. It currently focuses on Germany and Austria but more countries will be added in the future.
Article | Thread
Gavi Long COVID patients need scientific ambition, not defeatism
Great article by forum member Ravi Veriah Jacques together with K. Lynch, J. Moen and C. Maddison on the historical neglect of ME/CFS and how the pandemic should ramp up research effort. "Giving up at this early juncture would likely doom many Long COVID patients to the same fate ME/CFS sufferers have faced for decades: debilitating illness without end. We want our lives back, and the only path to that is scientific ambition."
Article l Thread
Cochrane petition Science for ME committee has added an update, "We are still waiting", to the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review". There has been no news from Cochrane about out complaints or from Hilda Bastian about progress towards the new review since December.
Petition update | Thread
............
Research news and commentary
The University of Manchester are looking for adults with ME/CFS or Long Covid to take part in a study to develop a clinical assessment toolkit. Testing a new questionnaire, with repeat test 2 weeks later. Online or on paper, takes 10-15 minutes.
Details with link | Thread
Trial by Error by David Tuller
Finally, Our Letter on Inflated Claims of FND Prevalence Is Published
Tuller et al have published a letter in the journal NeuroImage: Clinical as a response to an article by Perez et al containing inflated claims of FND prevalence. The letter is posted in full in the article and concludes: "...the published findings cited by Perez et al and addressed in this letter do not support either the claim that it is the “2nd most common” diagnosis in outpatient neurology clinics or the related claim that its prevalence at these venues is 16%."
Article l Thread
Unconvincing Response to Letter on FND Prevalence Inflation
Perez et al had first agreed to a correction of their mistake regarding FND prevalence, but then withdrew that agreement and instead wrote a response in the journal. Tuller critiques their argumentation and concludes: "The bottom line here is this: A group of distinguished researchers misrepresented key data from a prominent study in their field. They got called out. Instead of forthrightly acknowledging their mistake and correcting it, they have issued an unconvincing response—in the process documenting the validity of the criticism."
Article l Thread
.............
Coming events
USA - NIH ME/CFS Advocacy Call
March 4, 11 AM to Noon Eastern Time
This webinar will include updates on the NIH ME/CFS Research Roadmap by Vicky Whittemore, Ph.D., Maureen Hanson, Ph.D., and Lucinda (Cindy) Bateman, M.D. During the webinar attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. Please register in advance.
Announcement | Registration | Thread
.............
Research
ME/CFS research
Critical Social Policy
Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID - Joanne Hunt
"The UK government's recent announcement that the highly controversial Work Capability Assessment (WCA) will likely be abolished leaves questions of what precisely will emerge in its place." Hunt outlines the history of the construct of "‘deserving’ and ‘undeserving’ impairment, ill-health and related disability" that causes problems for people with ME/CFS, and likely also for people with Long COVID.
Article | Thread
BMJ Neurology Open
Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study - Stussman et al.
This exploratory study includes qualitative interviews of 10 ME/CFS patients who underwent cardiopulmonary exercise testing.
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Can a consensus occur on a research case definition for ME/CFS? - Jason et al.
A brief questionnaire was distributed to an international group of patients to assess key issues involving ME and ME/CFS case definitions. Post-exertional malaise, cognitive impairment, fatigue, and unrefreshing sleep were the most endorsed core symptoms with at least 80% consensus among participants.
Article | Thread
Long Covid research
Mitochondrion
Altered mitochondrial respiration in peripheral blood mononuclear cells of post-acute sequelae of SARS-CoV-2 infection — Dirajlal-Fargo et al.
“these findings suggest that the increase in the energetic needs of PASC PBMC contributes to the symptoms of PASC. The results herein lead to two novel hypotheses to describe the pathomechanisms leading to PASC, one involving immune dysregulation facilitated by monocytes and the other involving a residual viral reservoir in [haematopoietic stem cells].”
Article | Thread
Preprint: MedRxiv
Restrained memory CD8+ T cell responses favors viral persistence and elevated IgG responses in patients with severe Long COVID — Lucie Rodriguez et al.
“This proxy measure correlates with both innate inflammatory responses, and a restrained, unexpanded memory CD8 +T cell response towards SARS-CoV-2” “We find monocyte redistribution in favor of CD33-expressing classical monocytes in Long COVID”
Article | Thread
Med
Complement dysregulation is a prevalent and therapeutically amenable feature of long COVID — Kirsten Baillie et al.
“We found that markers of complement activation spanning the classical (C1s-C1INH), alternative (iC3b, Ba), and terminal pathways (C5a, TCC), but not the lectin pathway (MASP1-C1INH), were all significantly elevated in patients with long COVID”
Article | Thread
Nature Scientific Reports
Gut microbiota composition is altered in postural orthostatic tachycardia syndrome and post-acute COVID-19 syndrome — Hamrefors et al.
“The main findings of the present study were the lower richness in alpha diversity in patients with POTS and PACS compared with controls, and the differences in beta diversity between patient groups and controls.”
Article | Thread
Preprint: MedRxiv
Genome-wide association study reveals different T cell distributions in peripheral blood of healthy individuals at high genetic risk of type 1 diabetes and long COVID — Laura Deecke et al.
“Our novel results now show that the genetic predisposition to T1D and long COVID leads to different immune cell compositions of CD8+ and CD4+ T cells already in the pre-disease state.”
Article | Thread
Emerging Infectious Diseases journal
Early Release - Estimates of Incidence and Predictors of Fatiguing Illness after SARS-CoV-2 Infection - Volume 30, Number 3—March 2024 - Emerging Infectious Diseases journal - CDC — Quan M. Vu et al.
“A substantial percentage of patients with fatigue remain ill for many months with an illness similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an unexplained syndrome sometimes seen after infections that is characterized by functional limitations that impair patients’ ability to maintain daily activities and is associated with profound fatigue.”
Article | Thread
European Respiratory Journal
Core Outcome Measurement Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID) in Children and Young People: An International Delphi Consensus Study “PC-COS Children” — Nina Seylanova et al.
“four instruments met a priori consensus criteria for inclusion: 'PedsQL multidimensional Fatigue scale' for 'fatigue'; 'PedsQL Gastrointestinal symptom scales' for 'gastrointestinal'; 'PedsQL Cognitive Functioning Scale' for 'Neuro-cognitive' and 'EQ5D family' for ‘physical functioning’.”
Article | Thread
International Journal of Molecular Sciences
Longitudinal NMR-Based Metabolomics Study Reveals How Hospitalized COVID-19 Patients Recover: Evidence of Dyslipidemia and Energy Metabolism Dysregulation — Ansone et al.
“In our study, two important overlapping pathways of energy metabolism, glycolysis/gluconeogenesis and pyruvate metabolism, were identified as significantly different between COVID-19 patients (at all timepoints) and population controls.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
The Netherlands
On February 15, the Dutch Parliament voted on several amendments including one for €4,4 million of additional funding for ME/CFS research and one on €27 million for the establishment of Long Covid clinics. Both amendments were accepted.
Article | Thread
Germany
The ME/CFS Research Foundation has created a research register. It offers comprehensive information on MECFS projects, researchers, and publications. It currently focuses on Germany and Austria but more countries will be added in the future.
Article | Thread
Gavi Long COVID patients need scientific ambition, not defeatism
Great article by forum member Ravi Veriah Jacques together with K. Lynch, J. Moen and C. Maddison on the historical neglect of ME/CFS and how the pandemic should ramp up research effort. "Giving up at this early juncture would likely doom many Long COVID patients to the same fate ME/CFS sufferers have faced for decades: debilitating illness without end. We want our lives back, and the only path to that is scientific ambition."
Article l Thread
Cochrane petition Science for ME committee has added an update, "We are still waiting", to the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review". There has been no news from Cochrane about out complaints or from Hilda Bastian about progress towards the new review since December.
Petition update | Thread
............
Research news and commentary
The University of Manchester are looking for adults with ME/CFS or Long Covid to take part in a study to develop a clinical assessment toolkit. Testing a new questionnaire, with repeat test 2 weeks later. Online or on paper, takes 10-15 minutes.
Details with link | Thread
Trial by Error by David Tuller
Finally, Our Letter on Inflated Claims of FND Prevalence Is Published
Tuller et al have published a letter in the journal NeuroImage: Clinical as a response to an article by Perez et al containing inflated claims of FND prevalence. The letter is posted in full in the article and concludes: "...the published findings cited by Perez et al and addressed in this letter do not support either the claim that it is the “2nd most common” diagnosis in outpatient neurology clinics or the related claim that its prevalence at these venues is 16%."
Article l Thread
Unconvincing Response to Letter on FND Prevalence Inflation
Perez et al had first agreed to a correction of their mistake regarding FND prevalence, but then withdrew that agreement and instead wrote a response in the journal. Tuller critiques their argumentation and concludes: "The bottom line here is this: A group of distinguished researchers misrepresented key data from a prominent study in their field. They got called out. Instead of forthrightly acknowledging their mistake and correcting it, they have issued an unconvincing response—in the process documenting the validity of the criticism."
Article l Thread
.............
Coming events
USA - NIH ME/CFS Advocacy Call
March 4, 11 AM to Noon Eastern Time
This webinar will include updates on the NIH ME/CFS Research Roadmap by Vicky Whittemore, Ph.D., Maureen Hanson, Ph.D., and Lucinda (Cindy) Bateman, M.D. During the webinar attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. Please register in advance.
Announcement | Registration | Thread
.............
Research
ME/CFS research
Critical Social Policy
Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID - Joanne Hunt
"The UK government's recent announcement that the highly controversial Work Capability Assessment (WCA) will likely be abolished leaves questions of what precisely will emerge in its place." Hunt outlines the history of the construct of "‘deserving’ and ‘undeserving’ impairment, ill-health and related disability" that causes problems for people with ME/CFS, and likely also for people with Long COVID.
Article | Thread
BMJ Neurology Open
Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study - Stussman et al.
This exploratory study includes qualitative interviews of 10 ME/CFS patients who underwent cardiopulmonary exercise testing.
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Can a consensus occur on a research case definition for ME/CFS? - Jason et al.
A brief questionnaire was distributed to an international group of patients to assess key issues involving ME and ME/CFS case definitions. Post-exertional malaise, cognitive impairment, fatigue, and unrefreshing sleep were the most endorsed core symptoms with at least 80% consensus among participants.
Article | Thread
Long Covid research
Mitochondrion
Altered mitochondrial respiration in peripheral blood mononuclear cells of post-acute sequelae of SARS-CoV-2 infection — Dirajlal-Fargo et al.
“these findings suggest that the increase in the energetic needs of PASC PBMC contributes to the symptoms of PASC. The results herein lead to two novel hypotheses to describe the pathomechanisms leading to PASC, one involving immune dysregulation facilitated by monocytes and the other involving a residual viral reservoir in [haematopoietic stem cells].”
Article | Thread
Preprint: MedRxiv
Restrained memory CD8+ T cell responses favors viral persistence and elevated IgG responses in patients with severe Long COVID — Lucie Rodriguez et al.
“This proxy measure correlates with both innate inflammatory responses, and a restrained, unexpanded memory CD8 +T cell response towards SARS-CoV-2” “We find monocyte redistribution in favor of CD33-expressing classical monocytes in Long COVID”
Article | Thread
Med
Complement dysregulation is a prevalent and therapeutically amenable feature of long COVID — Kirsten Baillie et al.
“We found that markers of complement activation spanning the classical (C1s-C1INH), alternative (iC3b, Ba), and terminal pathways (C5a, TCC), but not the lectin pathway (MASP1-C1INH), were all significantly elevated in patients with long COVID”
Article | Thread
Nature Scientific Reports
Gut microbiota composition is altered in postural orthostatic tachycardia syndrome and post-acute COVID-19 syndrome — Hamrefors et al.
“The main findings of the present study were the lower richness in alpha diversity in patients with POTS and PACS compared with controls, and the differences in beta diversity between patient groups and controls.”
Article | Thread
Preprint: MedRxiv
Genome-wide association study reveals different T cell distributions in peripheral blood of healthy individuals at high genetic risk of type 1 diabetes and long COVID — Laura Deecke et al.
“Our novel results now show that the genetic predisposition to T1D and long COVID leads to different immune cell compositions of CD8+ and CD4+ T cells already in the pre-disease state.”
Article | Thread
Emerging Infectious Diseases journal
Early Release - Estimates of Incidence and Predictors of Fatiguing Illness after SARS-CoV-2 Infection - Volume 30, Number 3—March 2024 - Emerging Infectious Diseases journal - CDC — Quan M. Vu et al.
“A substantial percentage of patients with fatigue remain ill for many months with an illness similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an unexplained syndrome sometimes seen after infections that is characterized by functional limitations that impair patients’ ability to maintain daily activities and is associated with profound fatigue.”
Article | Thread
European Respiratory Journal
Core Outcome Measurement Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID) in Children and Young People: An International Delphi Consensus Study “PC-COS Children” — Nina Seylanova et al.
“four instruments met a priori consensus criteria for inclusion: 'PedsQL multidimensional Fatigue scale' for 'fatigue'; 'PedsQL Gastrointestinal symptom scales' for 'gastrointestinal'; 'PedsQL Cognitive Functioning Scale' for 'Neuro-cognitive' and 'EQ5D family' for ‘physical functioning’.”
Article | Thread
International Journal of Molecular Sciences
Longitudinal NMR-Based Metabolomics Study Reveals How Hospitalized COVID-19 Patients Recover: Evidence of Dyslipidemia and Energy Metabolism Dysregulation — Ansone et al.
“In our study, two important overlapping pathways of energy metabolism, glycolysis/gluconeogenesis and pyruvate metabolism, were identified as significantly different between COVID-19 patients (at all timepoints) and population controls.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 19th February 2024
News, advocacy and media
UK Channel 4 News M.E.: Lives devastated - and sufferers told it's made up
An honest and heartbreaking report about the situation for very severe ME patients in the UK. Clare Norton tells the story of her daughter Merryn Croft and Sean O'Neill tells the story about his daughter Maeve. Both were completely let down by the health care system and died of ME. Sonya Chowdhury, CEO at Action from ME says there are still many doctors who disbelieve ME and who don't follow the clinical guideline.
News segment l Thread
Australia Government response to recommendations of Long COVID Parliamentary Enquiry
The govt response is subtitled "Sick and tired: Casting a long shadow". Statement also made by the Minister for Health and Aged Care.
Govt Response | Minister's Statement | ABC News Item | Thread
UK APPG The annual general meeting of the All Party Parliamentary Group on ME/CFS was held this week. Carol Monaghan MP has done a 2 minute video report, leading with their agreement to sign in support of the Science for ME letter to Cochrane requesting withdrawal of the Exercise therapy for CFS review. Also discussed the contribution of the 2022 APPG report to the government's implementation planning for ME/CFS. For the coming year they expect to focus on severe ME and on following progress in research including DecodeME.
Thread with link to video
Sweden The private Bragée ME clinic recently closed down suddenly. Their 2500 patients are currently not getting specialised care nor renewed prescriptions for off-label treatment from the clinic while a new offer is under the development for post viral illness within public health care. Sveriges Radio has had two news segments on this situation. Patient advocate MittEremitage asks why the off-label treatments weren't instead prescribed within clinical trials.
News segment 1 l News segment 2 l MittEremitage article l Thread
ScienceAlert The Number of People With Persistent Fatigue Could Soon Double. Here's Why.
"A study from a team in Germany, published in Internal Medicine, says that the long-lasting effects of COVID-19 on many individuals will mean they could meet the diagnostic criteria for ME/CFS. While it's not yet clear if long COVID and ME/CFS are the same, they share enough similarities that mean ME/CFS case numbers could rise significantly in the coming years."
Article l Thread
..............
Fundraising
Mike Harley posted an update about his next two marathons (Serbia and Albania) to raise funds for Invest in ME. Quote: "I'm only £906 short of £50K fundraising in what is coming up to my 10th year running for ME research."
Just Giving | Thread
..............
Research news and commentary
Science Solving the puzzle of Long Covid - Ziad Al-Aly and Eric Topol
A good summary of current knowledge on Long Covid. The authors argue that the pandemic has revealed that long-term health loss due to infections has been a blind spot in epidemiology and surveillance data. "Governments and funding agencies should support a comprehensive portfolio of research in infection-associated chronic illnesses. Although SARS-CoV-2 can cause chronic disease, it is not alone. Influenza virus, Epstein-Barr virus, Ebola virus, polio virus, and many others also have long-term health effects. Myalgic encephalomyelitis/ chronic fatigue syndrome is also likely triggered by infection. However, how infectious agents cause chronic disease is not fully understood, and research in this area has been disproportionately underfunded relative to the burden of long-term disability and disease caused by infections."
Article l Thread
Australia Emerge AusME Biobank
Request for blood donations from patients and healthy volunteers living in New South Wales or Victoria.
AusME Biobank | Thread
Australia NCNED Low Dose Naltrexone Clinical Trial in Long Covid
NCNED announces they will be starting this trial very shortly.
Facebook Post | Thread
................
Coming events
USA - NIH ME/CFS Advocacy Call
Monday, March 4, 11 AM to Noon Eastern Time
This webinar will include updates on the NIH ME/CFS Research Roadmap by Vicky Whittemore, Ph.D., Maureen Hanson, Ph.D., and Lucinda (Cindy) Bateman, M.D. During the webinar attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. Please register in advance.
Announcement | Registration | Thread
#MEAction - Partner Caregiver Support Call
Sunday, March 3, 3:00 - 4:00 PM Eastern time
Zoom call for caregivers of people with chronic diseases such as ME or Long COVID. See thread for time in your time zone.
Announcement | Thread
.................
Research
ME/CFS research
Nature Communications
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome - Walitt, Nath et al.
The long awaited publication of the NIH intramural study of post infectious ME/CFS had 17 participants with ME/CFS and 25 controls. Findings include autonomic and immune dysfunction and brain abnormalities. Response is mixed including concerns about conclusions being drawn from tiny subsamples of patients, and use of the term 'effort preference'. Media coverage is generally positive.
Article | Thread
Press Statement
“We think that the immune activation is affecting the brain in various ways, causing biochemical changes and downstream effects like motor, autonomic, and cardiorespiratory dysfunction,” said Avindra Nath, M.D., clinical director at NINDS and senior author of the study.
Media: Stat | New York Times | Science Media Centre
Scientific American | Independent | Science | Guardian
Live Science | NPR | MedPage Today | Pulse
Journal of Psychosomatic Research
Psychological risk factors of somatic symptom disorder: A systematic review and meta-analysis of cross-sectional and longitudinal studies - Smakowski et al.
This review found that patients with somatic symptom disorder were more impaired by depression and anxiety compared to healthy controls.
Article | Thread
Long Covid research
Journal of Infection and Public Health
Lipidomics signature in post-COVID patient sera and its influence on the prolonged inflammatory response — Garrido et al.
“The study uncovered substantial changes in various lipid subclasses, presenting a detailed profile of the polar lipid fraction in PCC patients.” “Classification models, such as multinomial regression (MR) and random forest (RF), successfully differentiated between symptomatic and asymptomatic PCC groups using lipidomic profiles.”
Article | Thread
Nature Neuroscience
Proteomic and transcriptomic profiling of brainstem, cerebellum and olfactory tissues in early- and late-phase COVID-19 — Radke et al.
“Our results indicate that even without persistence of severe acute respiratory syndrome coronavirus 2 in the central nervous system, local immune reactions are prevailing, potentially causing functional disturbances that contribute to neurological complications of COVID-19.”
Article | Thread
Nature Neuroscience
Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment — Greene et al.
“While standard diagnostic MRI scans showed no clinically relevant pathological findings in any participant, DCE-MRI imaging revealed significantly increased whole-brain leakage in patients with long COVID with brain fog”
Article | Thread
SLEEP Advances
Impact of sleep disruption on cognitive function in patients with postacute sequelae of SARS-CoV-2 infection: initial findings from a Neuro-COVID-19 clinic — Reid et al.
“Actigraphy showed Neuro-PASC patients had lower sleep efficiency, longer sleep latency (both p < 0.001), and later sleep midpoint (p = 0.039) compared to 71 age-matched healthy controls with no PASC history.”
Article | Thread
European Journal of Neurology
Cognitive domains affected post-COVID-19; a systematic review and meta-analysis — Jack B. Fanshawe et al.
“This review found moderate impairments across multiple domains of cognition in patients post-COVID-19, with no specific pattern.” “The finding of consistent impairment across a range of cognitive tasks suggests broad, as opposed to domain-specific, brain dysfunction.”
Article | Thread
Nature
Prevalence of persistent SARS-CoV-2 in a large community surveillance study — Ghafari et al.
“Here, using viral sequence data collected as part of a national infection survey, we identified 381 individuals with SARS-CoV-2 RNA at high titre persisting for at least 30 days, of which 54 had viral RNA persisting at least 60 days.”
Article | Thread
Journal of Translational Medicine
Fatigue and symptom-based clusters in post COVID-19 patients: a multicentre, prospective, observational cohort study — Cornelissen et al.
“This study shows persistent fatigue and diverse symptomatology in post COVID-19 patients, up to 12–18 months after SARS-CoV-2 infection. Clustering showed that post COVID-19 patients occurred in 11 of the clusters that have been observed in the ME/CFS cohort.”
Article | Thread
Science Advances
Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid — Benjamin A. Krishna et al.
“In this study, we reveal that CD8 + T cells from patients diagnosed with Long Covid secrete increased levels of IFN-γ, spontaneously without peptide stimulation, compared to healthy controls. This high IFN-γ secretion correlated with symptom persistence in patients with Long Covid.”
Article | Thread
Nature Communications Medicine
Carotid body dysregulation contributes to Long COVID symptoms — El-Medany et al.
“The carotid chemoreflex is sensitised in long COVID and may explain dysregulated breathing and exercise intolerance in these participants.”
Article | Thread
Frontiers in Neurology
Neurological involvement among non-hospitalized adolescents and young adults 6 months after acute COVID-19 — Havdal et al.
“Serum levels of Nfl and GFAp were almost equal across groups and did not differ from reference values in healthy populations.“
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
UK Channel 4 News M.E.: Lives devastated - and sufferers told it's made up
An honest and heartbreaking report about the situation for very severe ME patients in the UK. Clare Norton tells the story of her daughter Merryn Croft and Sean O'Neill tells the story about his daughter Maeve. Both were completely let down by the health care system and died of ME. Sonya Chowdhury, CEO at Action from ME says there are still many doctors who disbelieve ME and who don't follow the clinical guideline.
News segment l Thread
Australia Government response to recommendations of Long COVID Parliamentary Enquiry
The govt response is subtitled "Sick and tired: Casting a long shadow". Statement also made by the Minister for Health and Aged Care.
Govt Response | Minister's Statement | ABC News Item | Thread
UK APPG The annual general meeting of the All Party Parliamentary Group on ME/CFS was held this week. Carol Monaghan MP has done a 2 minute video report, leading with their agreement to sign in support of the Science for ME letter to Cochrane requesting withdrawal of the Exercise therapy for CFS review. Also discussed the contribution of the 2022 APPG report to the government's implementation planning for ME/CFS. For the coming year they expect to focus on severe ME and on following progress in research including DecodeME.
Thread with link to video
Sweden The private Bragée ME clinic recently closed down suddenly. Their 2500 patients are currently not getting specialised care nor renewed prescriptions for off-label treatment from the clinic while a new offer is under the development for post viral illness within public health care. Sveriges Radio has had two news segments on this situation. Patient advocate MittEremitage asks why the off-label treatments weren't instead prescribed within clinical trials.
News segment 1 l News segment 2 l MittEremitage article l Thread
ScienceAlert The Number of People With Persistent Fatigue Could Soon Double. Here's Why.
"A study from a team in Germany, published in Internal Medicine, says that the long-lasting effects of COVID-19 on many individuals will mean they could meet the diagnostic criteria for ME/CFS. While it's not yet clear if long COVID and ME/CFS are the same, they share enough similarities that mean ME/CFS case numbers could rise significantly in the coming years."
Article l Thread
..............
Fundraising
Mike Harley posted an update about his next two marathons (Serbia and Albania) to raise funds for Invest in ME. Quote: "I'm only £906 short of £50K fundraising in what is coming up to my 10th year running for ME research."
Just Giving | Thread
..............
Research news and commentary
Science Solving the puzzle of Long Covid - Ziad Al-Aly and Eric Topol
A good summary of current knowledge on Long Covid. The authors argue that the pandemic has revealed that long-term health loss due to infections has been a blind spot in epidemiology and surveillance data. "Governments and funding agencies should support a comprehensive portfolio of research in infection-associated chronic illnesses. Although SARS-CoV-2 can cause chronic disease, it is not alone. Influenza virus, Epstein-Barr virus, Ebola virus, polio virus, and many others also have long-term health effects. Myalgic encephalomyelitis/ chronic fatigue syndrome is also likely triggered by infection. However, how infectious agents cause chronic disease is not fully understood, and research in this area has been disproportionately underfunded relative to the burden of long-term disability and disease caused by infections."
Article l Thread
Australia Emerge AusME Biobank
Request for blood donations from patients and healthy volunteers living in New South Wales or Victoria.
AusME Biobank | Thread
Australia NCNED Low Dose Naltrexone Clinical Trial in Long Covid
NCNED announces they will be starting this trial very shortly.
Facebook Post | Thread
................
Coming events
USA - NIH ME/CFS Advocacy Call
Monday, March 4, 11 AM to Noon Eastern Time
This webinar will include updates on the NIH ME/CFS Research Roadmap by Vicky Whittemore, Ph.D., Maureen Hanson, Ph.D., and Lucinda (Cindy) Bateman, M.D. During the webinar attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. Please register in advance.
Announcement | Registration | Thread
#MEAction - Partner Caregiver Support Call
Sunday, March 3, 3:00 - 4:00 PM Eastern time
Zoom call for caregivers of people with chronic diseases such as ME or Long COVID. See thread for time in your time zone.
Announcement | Thread
.................
Research
ME/CFS research
Nature Communications
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome - Walitt, Nath et al.
The long awaited publication of the NIH intramural study of post infectious ME/CFS had 17 participants with ME/CFS and 25 controls. Findings include autonomic and immune dysfunction and brain abnormalities. Response is mixed including concerns about conclusions being drawn from tiny subsamples of patients, and use of the term 'effort preference'. Media coverage is generally positive.
Article | Thread
Press Statement
“We think that the immune activation is affecting the brain in various ways, causing biochemical changes and downstream effects like motor, autonomic, and cardiorespiratory dysfunction,” said Avindra Nath, M.D., clinical director at NINDS and senior author of the study.
Media: Stat | New York Times | Science Media Centre
Scientific American | Independent | Science | Guardian
Live Science | NPR | MedPage Today | Pulse
Journal of Psychosomatic Research
Psychological risk factors of somatic symptom disorder: A systematic review and meta-analysis of cross-sectional and longitudinal studies - Smakowski et al.
This review found that patients with somatic symptom disorder were more impaired by depression and anxiety compared to healthy controls.
Article | Thread
Long Covid research
Journal of Infection and Public Health
Lipidomics signature in post-COVID patient sera and its influence on the prolonged inflammatory response — Garrido et al.
“The study uncovered substantial changes in various lipid subclasses, presenting a detailed profile of the polar lipid fraction in PCC patients.” “Classification models, such as multinomial regression (MR) and random forest (RF), successfully differentiated between symptomatic and asymptomatic PCC groups using lipidomic profiles.”
Article | Thread
Nature Neuroscience
Proteomic and transcriptomic profiling of brainstem, cerebellum and olfactory tissues in early- and late-phase COVID-19 — Radke et al.
“Our results indicate that even without persistence of severe acute respiratory syndrome coronavirus 2 in the central nervous system, local immune reactions are prevailing, potentially causing functional disturbances that contribute to neurological complications of COVID-19.”
Article | Thread
Nature Neuroscience
Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment — Greene et al.
“While standard diagnostic MRI scans showed no clinically relevant pathological findings in any participant, DCE-MRI imaging revealed significantly increased whole-brain leakage in patients with long COVID with brain fog”
Article | Thread
SLEEP Advances
Impact of sleep disruption on cognitive function in patients with postacute sequelae of SARS-CoV-2 infection: initial findings from a Neuro-COVID-19 clinic — Reid et al.
“Actigraphy showed Neuro-PASC patients had lower sleep efficiency, longer sleep latency (both p < 0.001), and later sleep midpoint (p = 0.039) compared to 71 age-matched healthy controls with no PASC history.”
Article | Thread
European Journal of Neurology
Cognitive domains affected post-COVID-19; a systematic review and meta-analysis — Jack B. Fanshawe et al.
“This review found moderate impairments across multiple domains of cognition in patients post-COVID-19, with no specific pattern.” “The finding of consistent impairment across a range of cognitive tasks suggests broad, as opposed to domain-specific, brain dysfunction.”
Article | Thread
Nature
Prevalence of persistent SARS-CoV-2 in a large community surveillance study — Ghafari et al.
“Here, using viral sequence data collected as part of a national infection survey, we identified 381 individuals with SARS-CoV-2 RNA at high titre persisting for at least 30 days, of which 54 had viral RNA persisting at least 60 days.”
Article | Thread
Journal of Translational Medicine
Fatigue and symptom-based clusters in post COVID-19 patients: a multicentre, prospective, observational cohort study — Cornelissen et al.
“This study shows persistent fatigue and diverse symptomatology in post COVID-19 patients, up to 12–18 months after SARS-CoV-2 infection. Clustering showed that post COVID-19 patients occurred in 11 of the clusters that have been observed in the ME/CFS cohort.”
Article | Thread
Science Advances
Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid — Benjamin A. Krishna et al.
“In this study, we reveal that CD8 + T cells from patients diagnosed with Long Covid secrete increased levels of IFN-γ, spontaneously without peptide stimulation, compared to healthy controls. This high IFN-γ secretion correlated with symptom persistence in patients with Long Covid.”
Article | Thread
Nature Communications Medicine
Carotid body dysregulation contributes to Long COVID symptoms — El-Medany et al.
“The carotid chemoreflex is sensitised in long COVID and may explain dysregulated breathing and exercise intolerance in these participants.”
Article | Thread
Frontiers in Neurology
Neurological involvement among non-hospitalized adolescents and young adults 6 months after acute COVID-19 — Havdal et al.
“Serum levels of Nfl and GFAp were almost equal across groups and did not differ from reference values in healthy populations.“
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
For next week's news go to:
News in Brief - March 2024
News in Brief - March 2024