-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
News in Brief - February 2023
- Thread starter S4ME News
- Start date
-
- Tags
- news news in brief
Week beginning 30th January 2023
News, articles and advocacy
UK - Scotland There was a debate in the Scottish parliament on the "Scottish Government Commissioned Review of ME Services and Future Action". The review from July 2022 raises the need for GP education and recommends setting up pilot services. MSP Sue Webber introduced the debate and she and others told constituents' stories. The minister who responded reported on plans and progress towards medical education and implementation of the NICE guideline. Some members of #MEAction Scotland attended.
Link to debate | Thread
Germany
The German Institute for Quality and Efficiency in Health Care (IQWiG) has extended its comment period on the general methods handbook.
Article here Thread here
Trial by Error by David Tuller A Response to Call for "A New Paradigm" for Long Covid in Lancet Respiratory Medicine
A critical letter to The Lancet by Dr. Tuller and Professor Tyson in response to the recent article "A new paradigm is needed to explain Long COVID" which claimed Long Covid is a functional disorder. Tuller/Tyson write: "Perhaps if the field of post-viral illness had not been neglected for decades, and patients with ME/CFS and related conditions had not been ignored and mistreated, we would understand a lot more now about the medical challenges confronting long Covid patients."
Article l Thread
Open Mind Gaslighting Long Haulers
Great article by Ryan Prior on the history of gaslighting of patients, including ME/CFS sufferers, and which now is in risk of being repeated with Long Covid sufferers.
Article l Thread
UK Dr Sarah Myhill, a private GP well known for claiming to be able to treat ME/CFS, has had her medical licence suspended for 9 months for spreading misinformation about Covid-19.
BBC article | Thread
......................
Podcasts and webinars
Podcast What actually is Post-Exertional Malaise?
The podcast The Rest Room by Natasha Lipman has a great conversation with Professor Todd Davenport on PEM.
Podcast l Thread
IACFS/ME - A recording of their Virtual Journal Club for January 2023 is now available. The topic is "Risk factors for suicidal ideation in a chronic illness" (about ME/CFS).
Video | Thread
Webinar with Leonard Jason
Title: Predictors of ME/CFS following mono: Implications for Long-Covid
The webinar was organised by the Norwegian ME Association. Duration: 1 hour.
Webinar l Thread
....................
Research news
UK DecodeME What we achieved in 2022
"At the time of writing, we have over 23,000 people registered as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, and nearly 9,000 people have already been sent a spit kit." Many more participants are needed.
Article | Take part | Thread
Europe
The European ME Coalition dissected the results of the long-awaited scoping study. This study defines “high-burden under-researched medical conditions” that will be targeted in future calls of the Horizon Europe research program.
Article here Thread here
USA - NIH The February 2023 issue of the NIH ME/CFS Newsletter, with updates on NIH’s ME/CFS-related research activities, is now available.
Newsletter | Thread
Australia Exercise & Sports Science Australia (ESSA) has awarded $50,000 to a Canberra team to research "Exercise Physiology in COVID recovery: exploring the feasibility and safety of graded exercise therapy in a COVID-Recovery Clinic". The team say: "In many parts of the world there is a resistance to using exercise in recovery from COVID and a lack of data to inform practice". Social media responses warn of potential harm to those with PESE/PEM.
Article | Thread
..................
Research
Biomedical ME/CFS research
Nature Scientific Reports
Circulating microRNA expression signatures accurately discriminate [ME] from fibromyalgia and comorbid conditions - Moreau et al
This study found differences in circulating miRNA between people with ME, FM, ME+FM and healthy controls. A machine learning model enabled the groups to be differentiated.
Paper | Thread
Int, J. Molecular Science
Stress-Induced Transcriptomic Changes in Females with ME/CFS Reveal Disrupted Immune Signatures - van Booven et al.
"Under maximal exertion, ME/CFS patients did not show significant changes in gene expression, while HCs demonstrated altered functional gene networks related to signaling and integral functions of their immune cells. During the recovery period (commonly during onset of PEM), female ME/CFS patients showed dysregulated immune signaling pathways and dysfunctional cellular responses to stress."
Paper | Thread
University of Edinburgh
Thesis: Investigating the Genetic and Immunological Aetiology of ME/CFS - Joshua Dibble
This PhD research involved a Genome Wide Association Study using UK biobank data, where one significant allele in males, and some other indicative alleles were found. In the second, "I developed a data analysis pipeline to analyse T-cell receptor (TCR) genomic DNA data..." The results did not support the hypothesis that "T-cell clonal expansion of people with ME/CFS would be greater than for healthy controls, and comparable to disease (multiple sclerosis) controls."
Thesis | Thread
PLoS One
Endothelial dysfunction in ME/CFS patients - Sandvik et al.
A substudy of the Fluge and Mella Rituximab trial. "Flow-mediated dilation (FMD) and post-occlusive reactive hyperemia (PORH) was measured at baseline and after 18 months of treatment in 39 patients and compared with healthy controls." Differences found led the authors to conclude: "ME/CFS patients had reduced macro- and microvascular endothelial function, indicating that vascular homeostasis may play a role in the clinical presentation of this disease."
Paper | Thread
Scandinavian Journal of Gastroenterology
Gastric dysmotility and gastrointestinal symptoms in ME/CFS - Steinsvik et al
In another substudy with patients on the rituximab trial, 20 people with ME/CFS with abdominal complaints did an ultrasound drink test. "The patients presented with fullness/bloating, nausea and epigastric pain, showed signs of impaired gastric accommodation and visceral hypersensitivity, showing that the gastrointestinal symptoms of ME/CFS patients are similar to functional dyspepsia."
Paper | Thread
Other ME/CFS research
Der Nervenarzt
Myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom: eine Übersicht zur aktuellen Evidenz - Ludwig et al.
In this German overview article by Austrian researchers, a psychosomatic approach to ME/CFS is proposed because of the high psychiatric comorbidity rate in ME/CFS patients.
Article here Thread here
Advances in Bioengineering and Biomedical Science Research
Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome - D. Marks
Health psychologist David Marks provides an overview of reviews that have amassed treatment harms to ME/CFS patients.
Article here Thread here
Diagnostics
Impact of Misdiagnosis in Case-Control Studies of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Malato
This article argues that if ME/CFS has a high rate of misdiagnosis, that most research studies on ME/CFS would have suboptimal statistical power to detect significant differences.
Article here Thread here
Long COVID research
Nature Immunology
A patient-centric modeling framework captures recovery from SARS-CoV-2 infection 2023 Ruffieux et al
"In particular, we found a strong inter-patient and intra-patient temporal covariation of innate immune cell numbers, kynurenine metabolites and lipid metabolites, which highlighted candidate immunologic and metabolic pathways influencing the restoration of homeostasis, the risk of death and that of long COVID."
Article | Thread
Nature Reviews Cardiology
Autonomic dysfunction and postural orthostatic tachycardia syndrome in post-acute COVID-19 syndrome — Fedorowski and Sutton
Summary and clinical outlook. "Microvascular dysfunction with inadequate regional microvascular and macrovascular responses, such as vasospasm and circulatory mismatch between local oxygen demands and supply, and venous retention leading to pooling and reduced venous return after standing, might explain the plethora of symptoms that are frequently observed in POTS."
Article | Thread
Frontiers in Immunology
Long-term high-dose immunoglobulin successfully treats long COVID patients with pulmonary, neurologic, and cardiologic symptoms — John S Thompson et al
Case report of 6 patients who demonstrated immunological abnormalities, including IgG subsets, who improved with high-dose long-term IV immunoglobulin therapy.
Article | Thread
Social Science and Medicine
Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review — Mullard, Greenhalgh et al
Evaluation of peer support in long COVID, with reference to "comparable chronic conditions that lead to substantial changes in lifestyle and impact daily activities", such as diabetes and HIV. ME/CFS is not covered.
Article | Thread
Preprint
Blood-brain barrier disruption in Long COVID-associated cognitive impairment — Greene et al
Using dynamic contrast-enhanced MRI of the brain as a clinically available imaging technique. "Our data suggest that BBB disruption is strongly associated with long COVID-associated cognitive impairment with regional differences in BBB integrity in long COVID patients displaying brain fog."
Article | Thread
Preprint
Long COVID brain fog and muscle pain are associated with longer time to clearance of SARS-CoV-2 RNA during acute infection — Yu et al
"This work indicates that at least two long COVID symptoms - brain fog and muscle pain – at 90+ days from acute COVID-19 onset are specifically associated with longer time to clearance of SARS-CoV-2 RNA from the upper respiratory tract."
Article | Thread
...................
Coming events
Sweden The Journal of the Swedish Medical Association has organised several seminars on burnout syndrome and ME/CFS. This year they are also including Long Covid. The seminar will be held as a webinar on Friday 17th February.
More information (in Swedish) l Thread
USA - Long Covid: What Will It Take To Accelerate Therapeutic Progress?
Webinar hosted by Solve M.E. and BIO
February 21 at 10:00 am - 1:00 pm Pacific / 1:00 pm - 4:00 pm Eastern
Announcement | Thread
USA - NIH posted a "save the date" message for an ME/CFS Research Conference planned for December 12-13, 2023, and a Young Investigator Workshop on December 11th. Full details are still to come.
Thread
.................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
UK - Scotland There was a debate in the Scottish parliament on the "Scottish Government Commissioned Review of ME Services and Future Action". The review from July 2022 raises the need for GP education and recommends setting up pilot services. MSP Sue Webber introduced the debate and she and others told constituents' stories. The minister who responded reported on plans and progress towards medical education and implementation of the NICE guideline. Some members of #MEAction Scotland attended.
Link to debate | Thread
Germany
The German Institute for Quality and Efficiency in Health Care (IQWiG) has extended its comment period on the general methods handbook.
Article here Thread here
Trial by Error by David Tuller A Response to Call for "A New Paradigm" for Long Covid in Lancet Respiratory Medicine
A critical letter to The Lancet by Dr. Tuller and Professor Tyson in response to the recent article "A new paradigm is needed to explain Long COVID" which claimed Long Covid is a functional disorder. Tuller/Tyson write: "Perhaps if the field of post-viral illness had not been neglected for decades, and patients with ME/CFS and related conditions had not been ignored and mistreated, we would understand a lot more now about the medical challenges confronting long Covid patients."
Article l Thread
Open Mind Gaslighting Long Haulers
Great article by Ryan Prior on the history of gaslighting of patients, including ME/CFS sufferers, and which now is in risk of being repeated with Long Covid sufferers.
Article l Thread
UK Dr Sarah Myhill, a private GP well known for claiming to be able to treat ME/CFS, has had her medical licence suspended for 9 months for spreading misinformation about Covid-19.
BBC article | Thread
......................
Podcasts and webinars
Podcast What actually is Post-Exertional Malaise?
The podcast The Rest Room by Natasha Lipman has a great conversation with Professor Todd Davenport on PEM.
Podcast l Thread
IACFS/ME - A recording of their Virtual Journal Club for January 2023 is now available. The topic is "Risk factors for suicidal ideation in a chronic illness" (about ME/CFS).
Video | Thread
Webinar with Leonard Jason
Title: Predictors of ME/CFS following mono: Implications for Long-Covid
The webinar was organised by the Norwegian ME Association. Duration: 1 hour.
Webinar l Thread
....................
Research news
UK DecodeME What we achieved in 2022
"At the time of writing, we have over 23,000 people registered as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, and nearly 9,000 people have already been sent a spit kit." Many more participants are needed.
Article | Take part | Thread
Europe
The European ME Coalition dissected the results of the long-awaited scoping study. This study defines “high-burden under-researched medical conditions” that will be targeted in future calls of the Horizon Europe research program.
Article here Thread here
USA - NIH The February 2023 issue of the NIH ME/CFS Newsletter, with updates on NIH’s ME/CFS-related research activities, is now available.
Newsletter | Thread
Australia Exercise & Sports Science Australia (ESSA) has awarded $50,000 to a Canberra team to research "Exercise Physiology in COVID recovery: exploring the feasibility and safety of graded exercise therapy in a COVID-Recovery Clinic". The team say: "In many parts of the world there is a resistance to using exercise in recovery from COVID and a lack of data to inform practice". Social media responses warn of potential harm to those with PESE/PEM.
Article | Thread
..................
Research
Biomedical ME/CFS research
Nature Scientific Reports
Circulating microRNA expression signatures accurately discriminate [ME] from fibromyalgia and comorbid conditions - Moreau et al
This study found differences in circulating miRNA between people with ME, FM, ME+FM and healthy controls. A machine learning model enabled the groups to be differentiated.
Paper | Thread
Int, J. Molecular Science
Stress-Induced Transcriptomic Changes in Females with ME/CFS Reveal Disrupted Immune Signatures - van Booven et al.
"Under maximal exertion, ME/CFS patients did not show significant changes in gene expression, while HCs demonstrated altered functional gene networks related to signaling and integral functions of their immune cells. During the recovery period (commonly during onset of PEM), female ME/CFS patients showed dysregulated immune signaling pathways and dysfunctional cellular responses to stress."
Paper | Thread
University of Edinburgh
Thesis: Investigating the Genetic and Immunological Aetiology of ME/CFS - Joshua Dibble
This PhD research involved a Genome Wide Association Study using UK biobank data, where one significant allele in males, and some other indicative alleles were found. In the second, "I developed a data analysis pipeline to analyse T-cell receptor (TCR) genomic DNA data..." The results did not support the hypothesis that "T-cell clonal expansion of people with ME/CFS would be greater than for healthy controls, and comparable to disease (multiple sclerosis) controls."
Thesis | Thread
PLoS One
Endothelial dysfunction in ME/CFS patients - Sandvik et al.
A substudy of the Fluge and Mella Rituximab trial. "Flow-mediated dilation (FMD) and post-occlusive reactive hyperemia (PORH) was measured at baseline and after 18 months of treatment in 39 patients and compared with healthy controls." Differences found led the authors to conclude: "ME/CFS patients had reduced macro- and microvascular endothelial function, indicating that vascular homeostasis may play a role in the clinical presentation of this disease."
Paper | Thread
Scandinavian Journal of Gastroenterology
Gastric dysmotility and gastrointestinal symptoms in ME/CFS - Steinsvik et al
In another substudy with patients on the rituximab trial, 20 people with ME/CFS with abdominal complaints did an ultrasound drink test. "The patients presented with fullness/bloating, nausea and epigastric pain, showed signs of impaired gastric accommodation and visceral hypersensitivity, showing that the gastrointestinal symptoms of ME/CFS patients are similar to functional dyspepsia."
Paper | Thread
Other ME/CFS research
Der Nervenarzt
Myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom: eine Übersicht zur aktuellen Evidenz - Ludwig et al.
In this German overview article by Austrian researchers, a psychosomatic approach to ME/CFS is proposed because of the high psychiatric comorbidity rate in ME/CFS patients.
Article here Thread here
Advances in Bioengineering and Biomedical Science Research
Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome - D. Marks
Health psychologist David Marks provides an overview of reviews that have amassed treatment harms to ME/CFS patients.
Article here Thread here
Diagnostics
Impact of Misdiagnosis in Case-Control Studies of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Malato
This article argues that if ME/CFS has a high rate of misdiagnosis, that most research studies on ME/CFS would have suboptimal statistical power to detect significant differences.
Article here Thread here
Long COVID research
Nature Immunology
A patient-centric modeling framework captures recovery from SARS-CoV-2 infection 2023 Ruffieux et al
"In particular, we found a strong inter-patient and intra-patient temporal covariation of innate immune cell numbers, kynurenine metabolites and lipid metabolites, which highlighted candidate immunologic and metabolic pathways influencing the restoration of homeostasis, the risk of death and that of long COVID."
Article | Thread
Nature Reviews Cardiology
Autonomic dysfunction and postural orthostatic tachycardia syndrome in post-acute COVID-19 syndrome — Fedorowski and Sutton
Summary and clinical outlook. "Microvascular dysfunction with inadequate regional microvascular and macrovascular responses, such as vasospasm and circulatory mismatch between local oxygen demands and supply, and venous retention leading to pooling and reduced venous return after standing, might explain the plethora of symptoms that are frequently observed in POTS."
Article | Thread
Frontiers in Immunology
Long-term high-dose immunoglobulin successfully treats long COVID patients with pulmonary, neurologic, and cardiologic symptoms — John S Thompson et al
Case report of 6 patients who demonstrated immunological abnormalities, including IgG subsets, who improved with high-dose long-term IV immunoglobulin therapy.
Article | Thread
Social Science and Medicine
Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review — Mullard, Greenhalgh et al
Evaluation of peer support in long COVID, with reference to "comparable chronic conditions that lead to substantial changes in lifestyle and impact daily activities", such as diabetes and HIV. ME/CFS is not covered.
Article | Thread
Preprint
Blood-brain barrier disruption in Long COVID-associated cognitive impairment — Greene et al
Using dynamic contrast-enhanced MRI of the brain as a clinically available imaging technique. "Our data suggest that BBB disruption is strongly associated with long COVID-associated cognitive impairment with regional differences in BBB integrity in long COVID patients displaying brain fog."
Article | Thread
Preprint
Long COVID brain fog and muscle pain are associated with longer time to clearance of SARS-CoV-2 RNA during acute infection — Yu et al
"This work indicates that at least two long COVID symptoms - brain fog and muscle pain – at 90+ days from acute COVID-19 onset are specifically associated with longer time to clearance of SARS-CoV-2 RNA from the upper respiratory tract."
Article | Thread
...................
Coming events
Sweden The Journal of the Swedish Medical Association has organised several seminars on burnout syndrome and ME/CFS. This year they are also including Long Covid. The seminar will be held as a webinar on Friday 17th February.
More information (in Swedish) l Thread
USA - Long Covid: What Will It Take To Accelerate Therapeutic Progress?
Webinar hosted by Solve M.E. and BIO
February 21 at 10:00 am - 1:00 pm Pacific / 1:00 pm - 4:00 pm Eastern
Announcement | Thread
USA - NIH posted a "save the date" message for an ME/CFS Research Conference planned for December 12-13, 2023, and a Young Investigator Workshop on December 11th. Full details are still to come.
Thread
.................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 6th February 2023
News, articles and advocacy
World ME Day May 12th 2023
World ME Alliance has announced the theme for World ME Day 2023 which will be post-exertional malaise with tagline: "ME: the disease where pushing harder can make you sicker".
Announcement l Thread
Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections. Documents detailing further consultations with clinicians have become available and are causing concern, as is the stopping of federal funding for Long Covid clinics.
Thread | Thread
BBC Radio Scotland interviewed ME Action Scotland for six minutes before last week's debate on ME in the Scottish Parliament. Broken Battery has uploaded the interview to YouTube.
Interview l Thread
The Inverness Courier Highlands MSP calls for national guidelines on chronic fatigue syndrome
About Highlands and Islands MSP Emma Roddick calling for the establishment of national guidelines for ME in Scotland. "Folk want their doctors to understand what their condition means".
Article l Thread
Action for M.E. In this five minute interview by Word On Health, Action for M.E. CEO Sonya Chowdhury provides an overview and general presentation of ME and also mentions associations to Long Covid.
Interview l Thread
Norway Psychology professor and Lightning Process researcher Silje Reme complained in a newspaper for academia about freedom of information requests concerning a controversial current study on LP as treatment for ME. Patient advocate Nina E. Steinkopf wrote in an onion piece in the same newspaper listing several questionable aspects with the research project and explaining it's not without reason these requests have occurred.
Article l Opinion piece l Thread
Outside How Chronic Fatigue Syndrome Grounded a World-Class Climber
Previous crack climber Mason Earle tells his story about becoming sick and being diagnosed with ME/CFS. He has tried numerous treatments and talks among other about adapting to a life with chronic illness.
Article l Thread
Germany
“He had prepared himself to die – then a doctor called”
Journalist Nina Weber has published a piece on ME/CFS patient Faraz Fallahi in the
influential German magazine Der Spiegel. Fallahi suffered from severe ME/CFS but has improved through the help of his physicians.
Article | Thread
.....................
Resources
NICE guideline summary A useful 4 page document summarising key elements from the 2021 ME/CFS NICE guideline, provided to accompany the free StudyPRN CPD module by Dr Nina Muirhead.
Document | CPD module | Thread
..................
Research news
Clinical Trials
Protocol: Randomized-controlled Trial of Immunoadsorption (IA) in Patients With Chronic Fatigue Syndrome (CFS) Including Patients With Post-COVID-19 CFS (PACS-CFS) - Burock
This trial is planned at the Charite University, Berlin, Germany.
It is a double-blinded, randomized, sham-controlled immunoadsorption (IA) study. A range of questionnaires and physical, cognitive and biomedical tests will be carried out. "The study will help to better understand disease mechanisms and thereby allow (hopefully biomarker associated) characterization of patients benefitting from such a costly but safe and often highly efficient therapy."
Protocol | Thread
DecodeME Article in PosAbility Magazine
"Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process."
"If you have ME/CFS, there’s still time to get involved. To find all the information you need, sign up for the study, and help change history, visit DecodeME.org.uk."
Article | Thread
.....................
Research
Biomedical ME/CFS research
Cell Host & Microbe
Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS — Cheng Guo et al.
“These findings provide unique insights into microbiome disturbances and the functional consequences of dysbiosis that may contribute to the manifestation of symptoms in ME/CFS and identify potentially actionable targets for disease classification and therapeutic testing.”
Article | Thread
Cell Host & Microbe
Multi-‘omics of gut microbiome-host interactions in short- and long-term myalgic encephalomyelitis/chronic fatigue syndrome patients — Ruoyun Xiong et al.
“Taken together, we have established a framework to study host-microbiome interactions leveraging ‘omics to identify host and microbial metabolites and functions implicit in ME/CFS, presenting a rich clinical and ‘omics dataset to further mechanistic hypotheses to better understand this debilitating disease.”
Article | Thread
Some articles about the two studies above:
NIH Studies find that microbiome changes may be a signature for ME/CFS Article
New Scientist Chronic fatigue syndrome linked to lower levels of some gut bacteria Article (paywalled)
Science Media Centre expert reaction to two studies on the gut microbiome and ME/CFS Article
Bateman Horne Center News Release: Microbiome Disturbances in ME/CFS Article
Infectious Agents and Cancer
Potential molecular mechanisms of chronic fatigue in long haul COVID and other viral diseases — Gottschalk et al.
Hypothesis paper that discusses potential explanations of long-term muscle fatigue. Covers possible roles of demyelination, cytotoxic CD8+ T-cell muscle infiltration, mitochondrial dysfunction neuroinflammation and EBV/HHV-6 reactivation.
Article | Thread
Frontiers in Neurology
Editorial: Infectious and inflammatory mechanistic underpinnings of CFS/ME - Alexander Robert Burton
A short historic summary of medical research into ME and of the renewed interest for CFS/ME and post-viral fatigue with SARS-Cov2. The latest edition of Frontiers in Neurology "renews focus on this poorly understood condition by offering innovative discussions of several potential pathophysiological mechanisms, mechanistic hypotheses and potential avenues for future treatments".
Article l Thread
Other research
BMC Medical Ethics
How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community - Borthwick et al.
The authors conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work.
Article | Thread
Journal of Translational Medicine
Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of chronic fatigue syndrome: a population-based study in Taiwan - Chen et al.
The authors used National Health Insurance Research Database of Taiwan and found that antidepressants, muscle relaxants and analgesic drugs increased the odds of being diagnosed with CFS.
Article | Thread
Journal of Translational Medicine
Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort - Vaes, Jason et al
"This study demonstrated that in ME/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME/CFS sample. Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options."
Paper l Thread
Nature Scientific Reports
Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue - Palacios, Komaroff et al
"In this large prospective cohort of female nurses who were followed for twenty years, we found that ME/CFS and Severe Fatigue had different risk factors, suggesting that the biological roots of ME/CFS may be different from those of the much more common state of Severe Fatigue. As have previous investigators, we also found an increased risk of ME/CFS in people with a history of infectious mononucleosis."
Paper l Thread
Long Covid research
Preprint
Long COVID manifests with T cell dysregulation, inflammation, and an uncoordinated adaptive immune response to SARS-CoV-2 — Kailin Yin et al.
“Most striking from our study was the finding that while fully recovered individuals exhibited coordinated humoral and cellular immune responses to SARS-CoV-2, this coordination was lost in the LC group. This finding is consistent with observations that about half of individuals with LC with no detectable SARS-CoV-2 antibodies have detectable SARS-CoV- 2-specific T cell responses. That improper crosstalk between T and B cells may be involved in the etiology of LC is also supported by our RNAseq data, which showed that a cluster of genes including both immunoglobulin synthesis and T cell function were co-upregulated in those without LC, but not in individuals with LC.”
Article | Thread
Journal of Applied Physiology
Exercise tolerance, fatigue, mental health and employment status at 5 and 12 months following COVID-19 illness in physically trained population — Ladlow et al.
“At 12-months, COVID-19-exposed participants had a reduced capacity for work at anaerobic threshold and at peak exercise levels of deconditioning persist, with many individuals struggling to return to strenuous activity.”
Article | Thread
Antioxidants
Potential of Nano-Antioxidants and Nanomedicine for Recovery from Neurological Disorders Linked to Long COVID Syndrome — Akanchise and Angelova
“Here, we present an overview of the current knowledge regarding the long-term neurological effects of COVID-19 and suggest therapeutic approaches involving nanoantioxidants and nanomedicine-based strategies in regeneration therapies of coronavirus-induced neurodegenerative cascades.”
Article | Thread
......................
Coming events
Northern Ireland Hope for ME and Fibro NI.
12th May ‘Delivering Together’ New NICE Guidelines for ME/CFS
"New NICE Guideline for ME/CFS was formally endorsed for NI on 19/1/22. We explore the radical changes, introduced for safe and adequate care."
A 3 hour session for professionals and legislators at the Parliament building.
Booking | Thread
Bateman Horne Center - Free Online Support Groups
Advance Registration Required
Topic: Practical Strategies for Talking to People Who Don’t Understand
Tuesday, February 14, 1 - 2 PM Mountain Time
Announcement | Thread
Topic: Spirituality and Hope
Tuesday, February 21, 1 - 2 PM Mountain Time
Announcement | Thread
IACFS/ME - Virtual Business Meeting
Friday, March 31, 2 PM Eastern Time
Email announcement only, no details yet on how to join this meeting.
Thread
......................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
World ME Day May 12th 2023
World ME Alliance has announced the theme for World ME Day 2023 which will be post-exertional malaise with tagline: "ME: the disease where pushing harder can make you sicker".
Announcement l Thread
Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections. Documents detailing further consultations with clinicians have become available and are causing concern, as is the stopping of federal funding for Long Covid clinics.
Thread | Thread
BBC Radio Scotland interviewed ME Action Scotland for six minutes before last week's debate on ME in the Scottish Parliament. Broken Battery has uploaded the interview to YouTube.
Interview l Thread
The Inverness Courier Highlands MSP calls for national guidelines on chronic fatigue syndrome
About Highlands and Islands MSP Emma Roddick calling for the establishment of national guidelines for ME in Scotland. "Folk want their doctors to understand what their condition means".
Article l Thread
Action for M.E. In this five minute interview by Word On Health, Action for M.E. CEO Sonya Chowdhury provides an overview and general presentation of ME and also mentions associations to Long Covid.
Interview l Thread
Norway Psychology professor and Lightning Process researcher Silje Reme complained in a newspaper for academia about freedom of information requests concerning a controversial current study on LP as treatment for ME. Patient advocate Nina E. Steinkopf wrote in an onion piece in the same newspaper listing several questionable aspects with the research project and explaining it's not without reason these requests have occurred.
Article l Opinion piece l Thread
Outside How Chronic Fatigue Syndrome Grounded a World-Class Climber
Previous crack climber Mason Earle tells his story about becoming sick and being diagnosed with ME/CFS. He has tried numerous treatments and talks among other about adapting to a life with chronic illness.
Article l Thread
Germany
“He had prepared himself to die – then a doctor called”
Journalist Nina Weber has published a piece on ME/CFS patient Faraz Fallahi in the
influential German magazine Der Spiegel. Fallahi suffered from severe ME/CFS but has improved through the help of his physicians.
Article | Thread
.....................
Resources
NICE guideline summary A useful 4 page document summarising key elements from the 2021 ME/CFS NICE guideline, provided to accompany the free StudyPRN CPD module by Dr Nina Muirhead.
Document | CPD module | Thread
..................
Research news
Clinical Trials
Protocol: Randomized-controlled Trial of Immunoadsorption (IA) in Patients With Chronic Fatigue Syndrome (CFS) Including Patients With Post-COVID-19 CFS (PACS-CFS) - Burock
This trial is planned at the Charite University, Berlin, Germany.
It is a double-blinded, randomized, sham-controlled immunoadsorption (IA) study. A range of questionnaires and physical, cognitive and biomedical tests will be carried out. "The study will help to better understand disease mechanisms and thereby allow (hopefully biomarker associated) characterization of patients benefitting from such a costly but safe and often highly efficient therapy."
Protocol | Thread
DecodeME Article in PosAbility Magazine
"Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process."
"If you have ME/CFS, there’s still time to get involved. To find all the information you need, sign up for the study, and help change history, visit DecodeME.org.uk."
Article | Thread
.....................
Research
Biomedical ME/CFS research
Cell Host & Microbe
Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS — Cheng Guo et al.
“These findings provide unique insights into microbiome disturbances and the functional consequences of dysbiosis that may contribute to the manifestation of symptoms in ME/CFS and identify potentially actionable targets for disease classification and therapeutic testing.”
Article | Thread
Cell Host & Microbe
Multi-‘omics of gut microbiome-host interactions in short- and long-term myalgic encephalomyelitis/chronic fatigue syndrome patients — Ruoyun Xiong et al.
“Taken together, we have established a framework to study host-microbiome interactions leveraging ‘omics to identify host and microbial metabolites and functions implicit in ME/CFS, presenting a rich clinical and ‘omics dataset to further mechanistic hypotheses to better understand this debilitating disease.”
Article | Thread
Some articles about the two studies above:
NIH Studies find that microbiome changes may be a signature for ME/CFS Article
New Scientist Chronic fatigue syndrome linked to lower levels of some gut bacteria Article (paywalled)
Science Media Centre expert reaction to two studies on the gut microbiome and ME/CFS Article
Bateman Horne Center News Release: Microbiome Disturbances in ME/CFS Article
Infectious Agents and Cancer
Potential molecular mechanisms of chronic fatigue in long haul COVID and other viral diseases — Gottschalk et al.
Hypothesis paper that discusses potential explanations of long-term muscle fatigue. Covers possible roles of demyelination, cytotoxic CD8+ T-cell muscle infiltration, mitochondrial dysfunction neuroinflammation and EBV/HHV-6 reactivation.
Article | Thread
Frontiers in Neurology
Editorial: Infectious and inflammatory mechanistic underpinnings of CFS/ME - Alexander Robert Burton
A short historic summary of medical research into ME and of the renewed interest for CFS/ME and post-viral fatigue with SARS-Cov2. The latest edition of Frontiers in Neurology "renews focus on this poorly understood condition by offering innovative discussions of several potential pathophysiological mechanisms, mechanistic hypotheses and potential avenues for future treatments".
Article l Thread
Other research
BMC Medical Ethics
How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community - Borthwick et al.
The authors conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work.
Article | Thread
Journal of Translational Medicine
Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of chronic fatigue syndrome: a population-based study in Taiwan - Chen et al.
The authors used National Health Insurance Research Database of Taiwan and found that antidepressants, muscle relaxants and analgesic drugs increased the odds of being diagnosed with CFS.
Article | Thread
Journal of Translational Medicine
Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort - Vaes, Jason et al
"This study demonstrated that in ME/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME/CFS sample. Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options."
Paper l Thread
Nature Scientific Reports
Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue - Palacios, Komaroff et al
"In this large prospective cohort of female nurses who were followed for twenty years, we found that ME/CFS and Severe Fatigue had different risk factors, suggesting that the biological roots of ME/CFS may be different from those of the much more common state of Severe Fatigue. As have previous investigators, we also found an increased risk of ME/CFS in people with a history of infectious mononucleosis."
Paper l Thread
Long Covid research
Preprint
Long COVID manifests with T cell dysregulation, inflammation, and an uncoordinated adaptive immune response to SARS-CoV-2 — Kailin Yin et al.
“Most striking from our study was the finding that while fully recovered individuals exhibited coordinated humoral and cellular immune responses to SARS-CoV-2, this coordination was lost in the LC group. This finding is consistent with observations that about half of individuals with LC with no detectable SARS-CoV-2 antibodies have detectable SARS-CoV- 2-specific T cell responses. That improper crosstalk between T and B cells may be involved in the etiology of LC is also supported by our RNAseq data, which showed that a cluster of genes including both immunoglobulin synthesis and T cell function were co-upregulated in those without LC, but not in individuals with LC.”
Article | Thread
Journal of Applied Physiology
Exercise tolerance, fatigue, mental health and employment status at 5 and 12 months following COVID-19 illness in physically trained population — Ladlow et al.
“At 12-months, COVID-19-exposed participants had a reduced capacity for work at anaerobic threshold and at peak exercise levels of deconditioning persist, with many individuals struggling to return to strenuous activity.”
Article | Thread
Antioxidants
Potential of Nano-Antioxidants and Nanomedicine for Recovery from Neurological Disorders Linked to Long COVID Syndrome — Akanchise and Angelova
“Here, we present an overview of the current knowledge regarding the long-term neurological effects of COVID-19 and suggest therapeutic approaches involving nanoantioxidants and nanomedicine-based strategies in regeneration therapies of coronavirus-induced neurodegenerative cascades.”
Article | Thread
......................
Coming events
Northern Ireland Hope for ME and Fibro NI.
12th May ‘Delivering Together’ New NICE Guidelines for ME/CFS
"New NICE Guideline for ME/CFS was formally endorsed for NI on 19/1/22. We explore the radical changes, introduced for safe and adequate care."
A 3 hour session for professionals and legislators at the Parliament building.
Booking | Thread
Bateman Horne Center - Free Online Support Groups
Advance Registration Required
Topic: Practical Strategies for Talking to People Who Don’t Understand
Tuesday, February 14, 1 - 2 PM Mountain Time
Announcement | Thread
Topic: Spirituality and Hope
Tuesday, February 21, 1 - 2 PM Mountain Time
Announcement | Thread
IACFS/ME - Virtual Business Meeting
Friday, March 31, 2 PM Eastern Time
Email announcement only, no details yet on how to join this meeting.
Thread
......................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 13th February 2023
News, articles and advocacy
World Health Organisation A clinical case definition for post COVID-19 condition in children and adolescents by expert consensus
This document is the result of a systematic review and clinicians meeting. The most common symptoms are listed as fatigue, altered smell/anosmia and anxiety.
WHO document | Thread
USA - CDC The next meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee is scheduled for March 7-8, 2023. One item on the agenda is a proposal to add a code for PEM/PESE to the symptoms section. This proposal was submitted last year (June 2022) by the Patient-Led Research Collaborative with support from other ME/CFS organisations in the USA.
Proposal (PDF) | Meeting Announcement | Thread
Finland Helsinki University Hospital is organising a symposium about Long Covid and ME with a "biopsychosocial" approach. Among speakers are Professor Michael Sharpe, Professor Paul Garner and Finnish promoters of "brain training programs". Millions Missing Finland says on Twitter they find the speaker list peculiar and worrying.
Thread with more information
Australia
The House Standing Committee on Health, Aged Care and Sport heard from Australians living with long COVID and other post-viral illness at a public hearing on 17 February at Parliament House in Canberra. The Guardian reported "Long Covid causing job losses and homelessness in Australia, inquiry hears". Penelope McMillan spoke about ME/CFS.
Parliament | Guardian | Thread
Canada The National ME/FM Action Network has published the Winter 2023 edition of their newsletter.
Newsletter | Thread
Sweden The patient organisation RME has published a statement expressing worry that a proposition to abolish and review the care option "Specialized rehabilitation for long-term pain and for fatigue syndrome" in The Stockholm Region will lead to a worsening of the care of ME patients.
Statement l Thread
STAT News The haunting brain science of long Covid
Dr. E. Wesley Ely writes about manifestations of cognitive disability in Long Covid, research findings and the lack of treatments. "... because of the dicey and unpredictable elements of post-exertional malaise, long Covid patients with ME/CFS must learn the daily art of pacing themselves".
Article l Thread
Scientific American Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments
The article includes a section on ME/CFS and an interview with Dr. Avindra Nath. Nath says they think mechanistically Long Covid and ME/CFS are going to be related and that the advantage with Long Covid is "that we know exactly what started the process, and you can catch cases early in the development of ME/CFS-like symptoms".
Article l Thread
Trial by Error by David Tuller Once More Regarding Inflated FND Rates- and a Reprise of a Letter to a Yale Neurologist
A number misrepresentation that causes an inflation of the prevalence of functional neurological disorders (FND) is still being used despite having been refuted. Lastly seen in an appeal in connection to a recent FND Parliamentary Awareness Day organised by the charity FND Hope UK. The source for this number is the same as was used by Yale neurologist Benjamin Tolchin in a 2021 paper on prevalence rates for FND. Tuller wrote to Dr Tolchin last year about this misrepresentation, never heard back, so has resent the letter.
Article l Thread
..................
Webinars
25% ME Group at The Malnutrition Task Force Sharing Practice Day
"Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focus on malnutrition in the elderly and Helen has drawn on the comparisons between the nutrition and care needs of the elderly and people with severe ME." 12 minute video.
Video | Thread
....................
Research news and commentary
UK DecodeME More UK participants are needed for this research which involves a questionnaire and a genome wide association study(GWAS). The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet.
Sharing | Take part | Thread
NIH Director's Blog More Clues into ME/CFS Discovered in Gut Microbiome
This blog discusses findings from two research papers that looked at the microbiome in ME/CFS patients. (see last week's news)
Blog | Thread
The Lancet Why we need a deeper understanding of the pathophysiology of long COVID - by Akiko Iwasaki and David Putrino
"Despite the multifactorial pathogenesis, available data show that long COVID is an organic post-acute infection syndrome (PAIS) with clear physiological dysfunction that is often not consistently apparent using standard medical diagnostic tests". The authors also argue for the inclusion of other forms of PAIS as comparison groups in long COVID research, as ME, CFS and post-treatment Lyme disease syndrome.
Comment l Thread
Trial by Error by David Tuller Correctives from Putrino & Iwasaki (and Others) to the Long-Covid-Is-Psychosomatic Claims
About several recent overviews and articles refuting the view of Long Covid as a psychosomatic illness. One of them is a paper in The Lancet (see item above) of which Tuller writes: "The Iwasaki/Putrino essay pokes holes in the argument that the failure to have already unravelled all of the long Covid's pathophysiological mechanisms means that this outpouring of reported symptoms is largely the result of "psychosocial strain" and related constructs".
Article l Thread
.....................
Research
ME/CFS biomedical research
International Journal of Molecular Sciences
Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients - Glass, Hanson et al
"The aim of this pilot study was to comprehensively characterize the urine metabolomes of eight female healthy sedentary control subjects and ten female ME/CFS patients in response to a maximal cardiopulmonary exercise test (CPET)." The abstract concludes: "Our most unanticipated discovery is the lack of changes in the urine metabolome of ME/CFS patients during recovery while significant changes are induced in controls after CPET, potentially demonstrating the lack of adaptation to a severe stress in ME/CFS patients."
Paper | Thread
Other research
Journal of Clinical Medicine
Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care - Sommerfelt et al.
This paper presents the finding of a Norwegian survey of 491 patients with severe and very severe ME/CFS.
Article | Thread
Behavioural and Cognitive Psychotherapy
Internet-delivered cognitive behavioural therapy for chronic fatigue among adolescents with a chronic medical condition: a single case study.
This Dutch paper describes an internet-based cognitive behavioural therapy (I-CBT) for chronically fatigued adolescents (FITNET-plus). The therapy was tested and applied in an adolescent with juvenile idiopathic arthritis.
Article | Thread
Journal of Psychosomatic Research
Persistent somatic symptom related stigmatisation by healthcare professionals: A systematic review of questionnaire measurement instruments
The authors conducted a systematic review to assess the quality of questionnaires that measures stigma among patients with persistent somatic symptoms (PSS).
Article | Thread
Long Covid research
Journal of the Royal Society of Medicine
Multi-organ impairment and long COVID: a 1-year prospective, longitudinal cohort study — Andrea Dennis et al.
“Organ impairment persisted in 59% of 331 individuals followed up at 1 year post COVID-19, with implications for symptoms, quality of life and longer-term health, signalling the need for prevention and integrated care of long COVID.”
Article | Thread
Journal of clinical & cellular immunology
Cytokine Deficiencies in Patients with Long-COVID — Elizabeth SCP Williams et al.
“We compared plasma cytokine levels from individuals with long-COVID to healthy individuals and found that those with long-COVID had 100% reductions in circulating levels of Interferon Gamma (IFNγ) and Interleukin-8 (IL-8). Additionally, we found significant reductions in levels of IL-6, IL-2, IL-17, IL-13, and IL-4 in individuals with long-COVID.”
Article | Thread
Journal of Clinical Medicine
Cardiopulmonary Long-Term Sequelae in Patients after Severe COVID-19 Disease — Niebauer et al.
“A total of 150 consecutive, hospitalized patients (February 2020 and April 2021) were included six months post hospital discharge for a clinical follow-up.” “Even 6 months after discharge, a majority fulfilled criteria for Long-COVID. While no associations between fatigue and cardiopulmonary abnormalities were found, exertional dyspnea correlated with impaired pulmonary function, reduced [Global Longitudinal Strain] and/or diastolic dysfunction.”
Article | Thread
Frontiers in Medicine
Case series: Maraviroc and pravastatin as a therapeutic option to treat long COVID/Post-acute sequelae of COVID (PASC) — Patterson et al.
“These findings suggest that by interrupting the monocytic-endothelial-platelet axis, maraviroc and pravastatin may restore the immune dysregulation observed in PASC and could be potential therapeutic options. This sets the framework for a future double-blinded, placebo-controlled randomized trial to further investigate the drug efficacy of maraviroc and pravastatin in treating PASC.”
Article | Thread
Cell Reports
SARS-CoV-2 spike protein induces TLR4-mediated long-term cognitive dysfunction recapitulating post-COVID syndrome in mice — Fabricia L. Fontes-Dantas et al.
“Collectively, these findings show that Spike protein impacts the mouse CNS, independent of virus infection, and identify TLR4 as a key mediator and interesting target to investigate the long-term cognitive dysfunction both in humans and rodents.”
Article | Thread
Preprint
Post-COVID syndrome is associated with capillary alterations, macrophage infiltration and distinct transcriptomic signatures in skeletal muscles — Tom Aschman et al.
“Compared to two independent historical control cohorts, patients with post-COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169+ macrophages. SARS-CoV-2 RNA could not be detected in the muscle tissues, but transcriptomic analysis revealed distinct gene signatures compared to the two control cohorts, indicating immune dysregulations and altered metabolic pathways.”
Article | Thread
......................
Coming events
UK - Invest in ME Research
Colloquium the 12th Biomedical Research into ME Research Colloquium, organised by IiMER for scientists and clinicians will be held on 31st May and 1st June 2023.
Conference IiMER will hold its first in person public international ME conference for 4 years on 2nd June 2023. It will include developments in Long Covid research relevant to ME/CFS. "Updates on research into ME from around the world will also be given - as well as input from the previous two days of the BRMEC12 closed researchers Colloquium."
Website | Thread
USA - National Academies of Sciences, Engineering, and Medicine
"Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors"
This 2-day event, which will be both virtual and in-person (Washington, DC), will discuss common factors in infection-associated chronic illnesses.
Announcement | Thread
.....................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
World Health Organisation A clinical case definition for post COVID-19 condition in children and adolescents by expert consensus
This document is the result of a systematic review and clinicians meeting. The most common symptoms are listed as fatigue, altered smell/anosmia and anxiety.
WHO document | Thread
USA - CDC The next meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee is scheduled for March 7-8, 2023. One item on the agenda is a proposal to add a code for PEM/PESE to the symptoms section. This proposal was submitted last year (June 2022) by the Patient-Led Research Collaborative with support from other ME/CFS organisations in the USA.
Proposal (PDF) | Meeting Announcement | Thread
Finland Helsinki University Hospital is organising a symposium about Long Covid and ME with a "biopsychosocial" approach. Among speakers are Professor Michael Sharpe, Professor Paul Garner and Finnish promoters of "brain training programs". Millions Missing Finland says on Twitter they find the speaker list peculiar and worrying.
Thread with more information
Australia
The House Standing Committee on Health, Aged Care and Sport heard from Australians living with long COVID and other post-viral illness at a public hearing on 17 February at Parliament House in Canberra. The Guardian reported "Long Covid causing job losses and homelessness in Australia, inquiry hears". Penelope McMillan spoke about ME/CFS.
Parliament | Guardian | Thread
Canada The National ME/FM Action Network has published the Winter 2023 edition of their newsletter.
Newsletter | Thread
Sweden The patient organisation RME has published a statement expressing worry that a proposition to abolish and review the care option "Specialized rehabilitation for long-term pain and for fatigue syndrome" in The Stockholm Region will lead to a worsening of the care of ME patients.
Statement l Thread
STAT News The haunting brain science of long Covid
Dr. E. Wesley Ely writes about manifestations of cognitive disability in Long Covid, research findings and the lack of treatments. "... because of the dicey and unpredictable elements of post-exertional malaise, long Covid patients with ME/CFS must learn the daily art of pacing themselves".
Article l Thread
Scientific American Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments
The article includes a section on ME/CFS and an interview with Dr. Avindra Nath. Nath says they think mechanistically Long Covid and ME/CFS are going to be related and that the advantage with Long Covid is "that we know exactly what started the process, and you can catch cases early in the development of ME/CFS-like symptoms".
Article l Thread
Trial by Error by David Tuller Once More Regarding Inflated FND Rates- and a Reprise of a Letter to a Yale Neurologist
A number misrepresentation that causes an inflation of the prevalence of functional neurological disorders (FND) is still being used despite having been refuted. Lastly seen in an appeal in connection to a recent FND Parliamentary Awareness Day organised by the charity FND Hope UK. The source for this number is the same as was used by Yale neurologist Benjamin Tolchin in a 2021 paper on prevalence rates for FND. Tuller wrote to Dr Tolchin last year about this misrepresentation, never heard back, so has resent the letter.
Article l Thread
..................
Webinars
25% ME Group at The Malnutrition Task Force Sharing Practice Day
"Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focus on malnutrition in the elderly and Helen has drawn on the comparisons between the nutrition and care needs of the elderly and people with severe ME." 12 minute video.
Video | Thread
....................
Research news and commentary
UK DecodeME More UK participants are needed for this research which involves a questionnaire and a genome wide association study(GWAS). The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet.
Sharing | Take part | Thread
NIH Director's Blog More Clues into ME/CFS Discovered in Gut Microbiome
This blog discusses findings from two research papers that looked at the microbiome in ME/CFS patients. (see last week's news)
Blog | Thread
The Lancet Why we need a deeper understanding of the pathophysiology of long COVID - by Akiko Iwasaki and David Putrino
"Despite the multifactorial pathogenesis, available data show that long COVID is an organic post-acute infection syndrome (PAIS) with clear physiological dysfunction that is often not consistently apparent using standard medical diagnostic tests". The authors also argue for the inclusion of other forms of PAIS as comparison groups in long COVID research, as ME, CFS and post-treatment Lyme disease syndrome.
Comment l Thread
Trial by Error by David Tuller Correctives from Putrino & Iwasaki (and Others) to the Long-Covid-Is-Psychosomatic Claims
About several recent overviews and articles refuting the view of Long Covid as a psychosomatic illness. One of them is a paper in The Lancet (see item above) of which Tuller writes: "The Iwasaki/Putrino essay pokes holes in the argument that the failure to have already unravelled all of the long Covid's pathophysiological mechanisms means that this outpouring of reported symptoms is largely the result of "psychosocial strain" and related constructs".
Article l Thread
.....................
Research
ME/CFS biomedical research
International Journal of Molecular Sciences
Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients - Glass, Hanson et al
"The aim of this pilot study was to comprehensively characterize the urine metabolomes of eight female healthy sedentary control subjects and ten female ME/CFS patients in response to a maximal cardiopulmonary exercise test (CPET)." The abstract concludes: "Our most unanticipated discovery is the lack of changes in the urine metabolome of ME/CFS patients during recovery while significant changes are induced in controls after CPET, potentially demonstrating the lack of adaptation to a severe stress in ME/CFS patients."
Paper | Thread
Other research
Journal of Clinical Medicine
Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care - Sommerfelt et al.
This paper presents the finding of a Norwegian survey of 491 patients with severe and very severe ME/CFS.
Article | Thread
Behavioural and Cognitive Psychotherapy
Internet-delivered cognitive behavioural therapy for chronic fatigue among adolescents with a chronic medical condition: a single case study.
This Dutch paper describes an internet-based cognitive behavioural therapy (I-CBT) for chronically fatigued adolescents (FITNET-plus). The therapy was tested and applied in an adolescent with juvenile idiopathic arthritis.
Article | Thread
Journal of Psychosomatic Research
Persistent somatic symptom related stigmatisation by healthcare professionals: A systematic review of questionnaire measurement instruments
The authors conducted a systematic review to assess the quality of questionnaires that measures stigma among patients with persistent somatic symptoms (PSS).
Article | Thread
Long Covid research
Journal of the Royal Society of Medicine
Multi-organ impairment and long COVID: a 1-year prospective, longitudinal cohort study — Andrea Dennis et al.
“Organ impairment persisted in 59% of 331 individuals followed up at 1 year post COVID-19, with implications for symptoms, quality of life and longer-term health, signalling the need for prevention and integrated care of long COVID.”
Article | Thread
Journal of clinical & cellular immunology
Cytokine Deficiencies in Patients with Long-COVID — Elizabeth SCP Williams et al.
“We compared plasma cytokine levels from individuals with long-COVID to healthy individuals and found that those with long-COVID had 100% reductions in circulating levels of Interferon Gamma (IFNγ) and Interleukin-8 (IL-8). Additionally, we found significant reductions in levels of IL-6, IL-2, IL-17, IL-13, and IL-4 in individuals with long-COVID.”
Article | Thread
Journal of Clinical Medicine
Cardiopulmonary Long-Term Sequelae in Patients after Severe COVID-19 Disease — Niebauer et al.
“A total of 150 consecutive, hospitalized patients (February 2020 and April 2021) were included six months post hospital discharge for a clinical follow-up.” “Even 6 months after discharge, a majority fulfilled criteria for Long-COVID. While no associations between fatigue and cardiopulmonary abnormalities were found, exertional dyspnea correlated with impaired pulmonary function, reduced [Global Longitudinal Strain] and/or diastolic dysfunction.”
Article | Thread
Frontiers in Medicine
Case series: Maraviroc and pravastatin as a therapeutic option to treat long COVID/Post-acute sequelae of COVID (PASC) — Patterson et al.
“These findings suggest that by interrupting the monocytic-endothelial-platelet axis, maraviroc and pravastatin may restore the immune dysregulation observed in PASC and could be potential therapeutic options. This sets the framework for a future double-blinded, placebo-controlled randomized trial to further investigate the drug efficacy of maraviroc and pravastatin in treating PASC.”
Article | Thread
Cell Reports
SARS-CoV-2 spike protein induces TLR4-mediated long-term cognitive dysfunction recapitulating post-COVID syndrome in mice — Fabricia L. Fontes-Dantas et al.
“Collectively, these findings show that Spike protein impacts the mouse CNS, independent of virus infection, and identify TLR4 as a key mediator and interesting target to investigate the long-term cognitive dysfunction both in humans and rodents.”
Article | Thread
Preprint
Post-COVID syndrome is associated with capillary alterations, macrophage infiltration and distinct transcriptomic signatures in skeletal muscles — Tom Aschman et al.
“Compared to two independent historical control cohorts, patients with post-COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169+ macrophages. SARS-CoV-2 RNA could not be detected in the muscle tissues, but transcriptomic analysis revealed distinct gene signatures compared to the two control cohorts, indicating immune dysregulations and altered metabolic pathways.”
Article | Thread
......................
Coming events
UK - Invest in ME Research
Colloquium the 12th Biomedical Research into ME Research Colloquium, organised by IiMER for scientists and clinicians will be held on 31st May and 1st June 2023.
Conference IiMER will hold its first in person public international ME conference for 4 years on 2nd June 2023. It will include developments in Long Covid research relevant to ME/CFS. "Updates on research into ME from around the world will also be given - as well as input from the previous two days of the BRMEC12 closed researchers Colloquium."
Website | Thread
USA - National Academies of Sciences, Engineering, and Medicine
"Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors"
This 2-day event, which will be both virtual and in-person (Washington, DC), will discuss common factors in infection-associated chronic illnesses.
Announcement | Thread
.....................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 20th February 2023
News, articles and advocacy
UK ReMEmber the ME charity run by Bill and Janice Kent has closed down on their retirement. They provided support, advocacy and education about ME for 25 years. 'Their award-winning work is recognized by the wide circle of supporters, patrons and above all the many, many people whose lives have benefited from the positive impact of their work.'
Announcement | Thread
World ME Alliance "Engaging with the WHO over disability health equity"
This article discusses meeting World Health Organization officials to discuss recommendations for the “Global report on health equity for persons with disabilities." This WHO report had gaps when it came to people with energy limiting disabilities.
Article | Thread
Trial by Error by David Tuller An upcoming "Biopsychosocial" Long Covid Conference in Finland
Tuller discusses a coming conference in Finland and its speakers. The conference has a biospychosocial approach to Long Covid and ME and Tuller asks why health care establishments in northern Europe are "so devoted to non-evidence-based approaches to treating serious medical conditions" (see also last week's news brief).
Article l Thread
USA The Calling all ME/CFS Allies! blog did an interview with Emily Taylor, Vice President of Advocacy and Engagement at Solve ME. One of the main topics was Solve M.E.'s Advocacy Week for 2023, but there was also discussion of Long Covid and other ME/CFS related topics.
Blog | Thread
The Conversation We got some key things wrong about long COVID. Here are 5 things we learned
Good article from Australia by Professor Peter Wark on Long Covid. ME/CFS is mentioned as a disease that shares symptoms associated with Long Covid.
Article l Thread
The Conversation We can learn a lot about long COVID from years of diagnosing and treating chronic fatigue syndrome
Article from Australia by Dr. Sarah Annesley, Dr. Elisha Josef and Dr. Michelle Tavoletti on similarities between long COVID and ME: "Post-viral illnesses are not new, and long COVID may represent the latest addition to this family. Each post-viral illness has some characteristics that make it unique, but they share similar clinical symptoms, and potentially, similar underlying disease mechanisms".
Article l Thread
Wired It's Fine to Never Meet IRL [in real life]
Fiona Lowenstein writes about the importance of cyber intimacy for high-risk individuals and that tech companies should do more to improve virtual meeting places.
Article l Thread
Financial Times Why Long Covid rehab must be very, very slow
About the challenges of fixed back-to-work-processes for Long Covid sufferers. Senior occupational therapist at North Bristol NHS Trust says it's common for the Long Covid patients she sees that their symptomas have flared up due to returning to work too quickly. The article also tells of how the concept of pacing from the ME field is being used in Long Covid.
Article l Thread
Stuff Young woman fed through straw, lives in darkness with chronic fatigue syndrome after Covid
About 22 year old Rebecca Cumming who has developed very severe ME after Covid and is now being nursed by her family. Professor emeritus Warren Tate says "We're seeing the same immune cell protein signature in long-Covid that we've characterised with ME/CFS".
Article l Thread
....................
Research news and commentary
UK DecodeME A visit to the UK Biocentre - Claire Tripp – Patient and Public Involvement Team Member. Three members of the team visited the centre where DNA is extracted from saliva samples. "The team at the UK Biocentre found the additional insight into DecodeME and the wider context of ME/CFS invaluable and moving."
Article | Take part | Thread
Open Medicine Foundation has posted an update on three research grants from Patient Led Research Collaborative. These projects "will investigate three key areas: sleep, drug repurposing, and multi-omics of ME/CFS and Long COVID".
Article | Thread
....................
Research
Circulation Reports
Orthostatic Intolerance and Chronotropic Incompetence in Patients With Myalgic Encephalomyelitis or Chronic Fatigue Syndrome - Kunihisa Miwa
"Some patients with ME were CI positive during standing tests, suggesting impaired sympathetic activation. The presence of POTS appears to be essential for maintaining orthostasis in these patients."
Paper | Thread
Preprint (not peer reviewed)
Decolonisation of Staphylococcus Aureus and therapeutic test to assist the diagnosis in ME/CFS, Long Covid, etc - Chang et al.
"We estimate that this Subgroup of patients presenting this persistent infection as a causal or contributing factor would be around a third of all cases."
Preprint | Thread
Journal of Psychosomatic Research
Dynamic modeling of experience sampling methodology data reveals large heterogeneity in biopsychosocial factors associated with persistent fatigue in young people living with a chronic condition - Vroegindeweij et al.
The authors used Experience Sampling Methodology (ESM) in 31 persistently fatigued adolescents and young adults with various chronic conditions. They found a high heterogeneity in biopsychosocial factors associated with fatigue.
Article | Thread
International Journal of Environmental Research and Public Health
Non-Pharmacological Therapies for Post-Viral Syndromes, Including Long COVID: A Systematic Review - Chandan et al.
The authors conducted a systematic review and found only 5 five studies on non-pharmacological interventions (Pilates, music therapy, telerehabilitation, resistance exercise, neuromodulation) that met their inclusion criteria. None provided robust evidence of efficacy.
Article | Thread
The Lancet Regional Health – Europe
Two-year follow-up of patients with post-COVID-19 condition in Sweden: a prospective cohort study — Wahlgren et al.
Follow-up of hospitalised patients. “Cognitive, sensorimotor, and fatigue symptoms were the most common persisting symptoms at 24 months. No clear difference was evident between individuals treated in the intensive care unit (ICU) and non-ICU-treated individuals. Approximately half of those who were on sick leave related to PCC at four months after infection were on sick leave at 24 months.”
Article | Thread
Frontiers in Psychology
Association between olfactory dysfunction and mood disturbances with objective and subjective cognitive deficits in long-COVID — Llana et al.
Concluding: “Olfactory dysfunction in the acute phase of the infection by COVID-19 is related to cognitive deficits in objective tests, and mood disturbances are associated with self-reported and objective memory.”
Article | Thread
....................
Coming events
Ireland
The Irish ME/CFS Association has arranged for Dr William Weir to give 5 ME/Chronic Fatigue Syndrome talks in Ireland around international ME/CFS Awareness Day, May 12 May. He will be speaking in Dublin, Cork, Limerick, Galway, and Sligo
Announcement | Thread
................
In memoriam
Dr. Paul Berg, PhD passed 15th February, announces OMF. Dr. Berg was a Nobel laureate scientist in the Chemistry category, received the National Medal of Science in 1983 and the National Library of Medicine Medal in 1986. He was a professor Emeritus as Stanford University and a National Academy of Sciences member. Dr. Berg joined OMF's scientific advisory board in 2014. OMF describes him as an invaluable member and that he "played a significant role in moving the needle forward in ME/CFS research".
Thread (members only)
Dr. Harald Inge Nyland, professor in neurology and medical researcher at Haukeland university hospital passed 15th February, 80 years old. He stood up for ME patients, acquired a lot of information about the disease, and treated the patient group with great respect. The Norwegian ME Association writes on Facebook: It is with deep gratitude that we will remember Harald Nyland's effort. Our work is based on everything he accomplished, as a doctor, professor, committed citizen and fellow human being.
Thread (members only)
James Robert Ellsworth We have heard of James Ellsworth's passing last October after 20 years living with ME/CFS, and with belatedly diagnosed cancer. He was well known in the ME community for his wise comments on David Tuller's blogs where he wrote as jimells, and he will be much missed.
Obituary | Thread (members only)
...........................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
UK ReMEmber the ME charity run by Bill and Janice Kent has closed down on their retirement. They provided support, advocacy and education about ME for 25 years. 'Their award-winning work is recognized by the wide circle of supporters, patrons and above all the many, many people whose lives have benefited from the positive impact of their work.'
Announcement | Thread
World ME Alliance "Engaging with the WHO over disability health equity"
This article discusses meeting World Health Organization officials to discuss recommendations for the “Global report on health equity for persons with disabilities." This WHO report had gaps when it came to people with energy limiting disabilities.
Article | Thread
Trial by Error by David Tuller An upcoming "Biopsychosocial" Long Covid Conference in Finland
Tuller discusses a coming conference in Finland and its speakers. The conference has a biospychosocial approach to Long Covid and ME and Tuller asks why health care establishments in northern Europe are "so devoted to non-evidence-based approaches to treating serious medical conditions" (see also last week's news brief).
Article l Thread
USA The Calling all ME/CFS Allies! blog did an interview with Emily Taylor, Vice President of Advocacy and Engagement at Solve ME. One of the main topics was Solve M.E.'s Advocacy Week for 2023, but there was also discussion of Long Covid and other ME/CFS related topics.
Blog | Thread
The Conversation We got some key things wrong about long COVID. Here are 5 things we learned
Good article from Australia by Professor Peter Wark on Long Covid. ME/CFS is mentioned as a disease that shares symptoms associated with Long Covid.
Article l Thread
The Conversation We can learn a lot about long COVID from years of diagnosing and treating chronic fatigue syndrome
Article from Australia by Dr. Sarah Annesley, Dr. Elisha Josef and Dr. Michelle Tavoletti on similarities between long COVID and ME: "Post-viral illnesses are not new, and long COVID may represent the latest addition to this family. Each post-viral illness has some characteristics that make it unique, but they share similar clinical symptoms, and potentially, similar underlying disease mechanisms".
Article l Thread
Wired It's Fine to Never Meet IRL [in real life]
Fiona Lowenstein writes about the importance of cyber intimacy for high-risk individuals and that tech companies should do more to improve virtual meeting places.
Article l Thread
Financial Times Why Long Covid rehab must be very, very slow
About the challenges of fixed back-to-work-processes for Long Covid sufferers. Senior occupational therapist at North Bristol NHS Trust says it's common for the Long Covid patients she sees that their symptomas have flared up due to returning to work too quickly. The article also tells of how the concept of pacing from the ME field is being used in Long Covid.
Article l Thread
Stuff Young woman fed through straw, lives in darkness with chronic fatigue syndrome after Covid
About 22 year old Rebecca Cumming who has developed very severe ME after Covid and is now being nursed by her family. Professor emeritus Warren Tate says "We're seeing the same immune cell protein signature in long-Covid that we've characterised with ME/CFS".
Article l Thread
....................
Research news and commentary
UK DecodeME A visit to the UK Biocentre - Claire Tripp – Patient and Public Involvement Team Member. Three members of the team visited the centre where DNA is extracted from saliva samples. "The team at the UK Biocentre found the additional insight into DecodeME and the wider context of ME/CFS invaluable and moving."
Article | Take part | Thread
Open Medicine Foundation has posted an update on three research grants from Patient Led Research Collaborative. These projects "will investigate three key areas: sleep, drug repurposing, and multi-omics of ME/CFS and Long COVID".
Article | Thread
....................
Research
Circulation Reports
Orthostatic Intolerance and Chronotropic Incompetence in Patients With Myalgic Encephalomyelitis or Chronic Fatigue Syndrome - Kunihisa Miwa
"Some patients with ME were CI positive during standing tests, suggesting impaired sympathetic activation. The presence of POTS appears to be essential for maintaining orthostasis in these patients."
Paper | Thread
Preprint (not peer reviewed)
Decolonisation of Staphylococcus Aureus and therapeutic test to assist the diagnosis in ME/CFS, Long Covid, etc - Chang et al.
"We estimate that this Subgroup of patients presenting this persistent infection as a causal or contributing factor would be around a third of all cases."
Preprint | Thread
Journal of Psychosomatic Research
Dynamic modeling of experience sampling methodology data reveals large heterogeneity in biopsychosocial factors associated with persistent fatigue in young people living with a chronic condition - Vroegindeweij et al.
The authors used Experience Sampling Methodology (ESM) in 31 persistently fatigued adolescents and young adults with various chronic conditions. They found a high heterogeneity in biopsychosocial factors associated with fatigue.
Article | Thread
International Journal of Environmental Research and Public Health
Non-Pharmacological Therapies for Post-Viral Syndromes, Including Long COVID: A Systematic Review - Chandan et al.
The authors conducted a systematic review and found only 5 five studies on non-pharmacological interventions (Pilates, music therapy, telerehabilitation, resistance exercise, neuromodulation) that met their inclusion criteria. None provided robust evidence of efficacy.
Article | Thread
The Lancet Regional Health – Europe
Two-year follow-up of patients with post-COVID-19 condition in Sweden: a prospective cohort study — Wahlgren et al.
Follow-up of hospitalised patients. “Cognitive, sensorimotor, and fatigue symptoms were the most common persisting symptoms at 24 months. No clear difference was evident between individuals treated in the intensive care unit (ICU) and non-ICU-treated individuals. Approximately half of those who were on sick leave related to PCC at four months after infection were on sick leave at 24 months.”
Article | Thread
Frontiers in Psychology
Association between olfactory dysfunction and mood disturbances with objective and subjective cognitive deficits in long-COVID — Llana et al.
Concluding: “Olfactory dysfunction in the acute phase of the infection by COVID-19 is related to cognitive deficits in objective tests, and mood disturbances are associated with self-reported and objective memory.”
Article | Thread
....................
Coming events
Ireland
The Irish ME/CFS Association has arranged for Dr William Weir to give 5 ME/Chronic Fatigue Syndrome talks in Ireland around international ME/CFS Awareness Day, May 12 May. He will be speaking in Dublin, Cork, Limerick, Galway, and Sligo
Announcement | Thread
................
In memoriam
Dr. Paul Berg, PhD passed 15th February, announces OMF. Dr. Berg was a Nobel laureate scientist in the Chemistry category, received the National Medal of Science in 1983 and the National Library of Medicine Medal in 1986. He was a professor Emeritus as Stanford University and a National Academy of Sciences member. Dr. Berg joined OMF's scientific advisory board in 2014. OMF describes him as an invaluable member and that he "played a significant role in moving the needle forward in ME/CFS research".
Thread (members only)
Dr. Harald Inge Nyland, professor in neurology and medical researcher at Haukeland university hospital passed 15th February, 80 years old. He stood up for ME patients, acquired a lot of information about the disease, and treated the patient group with great respect. The Norwegian ME Association writes on Facebook: It is with deep gratitude that we will remember Harald Nyland's effort. Our work is based on everything he accomplished, as a doctor, professor, committed citizen and fellow human being.
Thread (members only)
James Robert Ellsworth We have heard of James Ellsworth's passing last October after 20 years living with ME/CFS, and with belatedly diagnosed cancer. He was well known in the ME community for his wise comments on David Tuller's blogs where he wrote as jimells, and he will be much missed.
Obituary | Thread (members only)
...........................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator: