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News in Brief - August 2023
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Week beginning 31st July 2023
Part 1 of 2
News and articles
USA NIH selects Dr. Jeanne Marrazzo as director of the National Institute of Allergy and Infectious Diseases
This is the department that was run by Dr. Fauci, and deals with infections including COVID and Long COVID.
NIH announcement | Thread
STAT news | Washington Post
Drug Discovery News Blood tests for chronic fatigue syndrome
About research into finding a biomarker for ME, featuring Ron Davis, Maureen Hanson and Alain Moreau and their different approaches. Maureen Hanson says: "One problem with developing a marker is that there are lots of differences between individuals".
Article l Thread
Nature Connecting the dots from viral infection to disease
An editorial on the importance of research into viruses as causative agents of disease. "... multi-centre collaborations are needed to enable well-documented, large, longitudinal cohort studies. Ideally, these large cohorts would include a diverse set of participants (considering race and/or ethnicity, geographical location, sex, age, pregnancy status, socioeconomic status) in order to unravel the complexities of virus-induced diseases, such as long COVID and ME/CFS."
Article l Thread
.................
Coming events
Severe ME Day
Next week is Severe ME day August 8th and severe ME week. The forum has a thread with an overview of activities, advocacy initiatives and more.
Thread
USA NANDSC (National Institute of Neurologal Disorders and Stroke)
ME/CFS Research Roadmap Webinar Series
"Join an upcoming webinar to learn about current research, knowledge gaps, and future research opportunities for ME/CFS and contribute your ideas!"
The first webinar is Nervous System: August 25, 2023
Details and registration | Thread
.................
Research news
USA Government Department of Health and Human Services
"HHS Announces the Formation of the Office of Long COVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative"
Article | Thread
NIH RECOVER Initiative
NIH launches long COVID clinical trials through RECOVER Initiative, opening enrollment
The trials are grouped as follows:
RECOVER-VITAL testing the antiviral Paxlovid
RECOVER-NEURO for brain fog with trials testing brain training, web based goal management training, and transcranial direct current stimulation.
RECOVER-SLEEP treating hypersomnia with "two wakefulness-promoting drugs"
RECOVER-AUTONOMIC testing POTS and high heart rate treatments.
" A fifth platform protocol, focusing on exercise intolerance and fatigue, is under development with input from the patient community and scientific experts."
NIH article | Thread
Nature NIH launches trials for long-COVID treatments: what scientists think
"“The fact there were no trials until this point has been highly discouraging,” says Eric Topol, executive vice-president at Scripps Research in La Jolla, California. “The community of people suffering are desperate and want to see the investment by NIH bear fruit.”"
Nature | Thread
STAT News NIH begins long-delayed clinical trials for long Covid, announces new research office
"The NIH again delayed a particularly controversial trial to address exercise intolerance that has drawn a firestorm of criticism from experts and patients, who were concerned that the methods under consideration could harm patients with a condition called post-exertional malaise. The NIH said the trial is still under development and gave no timeline for when it might begin."
STAT news | Thread
More media coverage:
Washington Post | Thread
ABC News | CNN | AP article
_____________________
Canada ICanCME Research Network Funding Announcement
"... a national research network funded by the Canadian Institutes of Health Research (CIHR). .. The ME Stars of Tomorrow Scholarship Program supports the work of promising graduate students who are conducting Myalgic Encephalomyelitis research as part of their masters or doctoral research project."
Call for Proposal: English (word, pdf) Deadline: August 30, 2023.
Article | Thread
OMF Australia "We take immense pride in announcing the gracious gift of $500,000 to Open Medicine Foundation Australia Limited (OMFAL) to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program." The gift is from the McCusker Charitable Foundation.
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
.................
See next post for Research
Part 1 of 2
News and articles
USA NIH selects Dr. Jeanne Marrazzo as director of the National Institute of Allergy and Infectious Diseases
This is the department that was run by Dr. Fauci, and deals with infections including COVID and Long COVID.
NIH announcement | Thread
STAT news | Washington Post
Drug Discovery News Blood tests for chronic fatigue syndrome
About research into finding a biomarker for ME, featuring Ron Davis, Maureen Hanson and Alain Moreau and their different approaches. Maureen Hanson says: "One problem with developing a marker is that there are lots of differences between individuals".
Article l Thread
Nature Connecting the dots from viral infection to disease
An editorial on the importance of research into viruses as causative agents of disease. "... multi-centre collaborations are needed to enable well-documented, large, longitudinal cohort studies. Ideally, these large cohorts would include a diverse set of participants (considering race and/or ethnicity, geographical location, sex, age, pregnancy status, socioeconomic status) in order to unravel the complexities of virus-induced diseases, such as long COVID and ME/CFS."
Article l Thread
.................
Coming events
Severe ME Day
Next week is Severe ME day August 8th and severe ME week. The forum has a thread with an overview of activities, advocacy initiatives and more.
Thread
USA NANDSC (National Institute of Neurologal Disorders and Stroke)
ME/CFS Research Roadmap Webinar Series
"Join an upcoming webinar to learn about current research, knowledge gaps, and future research opportunities for ME/CFS and contribute your ideas!"
The first webinar is Nervous System: August 25, 2023
Details and registration | Thread
.................
Research news
USA Government Department of Health and Human Services
"HHS Announces the Formation of the Office of Long COVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative"
Article | Thread
NIH RECOVER Initiative
NIH launches long COVID clinical trials through RECOVER Initiative, opening enrollment
The trials are grouped as follows:
RECOVER-VITAL testing the antiviral Paxlovid
RECOVER-NEURO for brain fog with trials testing brain training, web based goal management training, and transcranial direct current stimulation.
RECOVER-SLEEP treating hypersomnia with "two wakefulness-promoting drugs"
RECOVER-AUTONOMIC testing POTS and high heart rate treatments.
" A fifth platform protocol, focusing on exercise intolerance and fatigue, is under development with input from the patient community and scientific experts."
NIH article | Thread
Nature NIH launches trials for long-COVID treatments: what scientists think
"“The fact there were no trials until this point has been highly discouraging,” says Eric Topol, executive vice-president at Scripps Research in La Jolla, California. “The community of people suffering are desperate and want to see the investment by NIH bear fruit.”"
Nature | Thread
STAT News NIH begins long-delayed clinical trials for long Covid, announces new research office
"The NIH again delayed a particularly controversial trial to address exercise intolerance that has drawn a firestorm of criticism from experts and patients, who were concerned that the methods under consideration could harm patients with a condition called post-exertional malaise. The NIH said the trial is still under development and gave no timeline for when it might begin."
STAT news | Thread
More media coverage:
Washington Post | Thread
ABC News | CNN | AP article
_____________________
Canada ICanCME Research Network Funding Announcement
"... a national research network funded by the Canadian Institutes of Health Research (CIHR). .. The ME Stars of Tomorrow Scholarship Program supports the work of promising graduate students who are conducting Myalgic Encephalomyelitis research as part of their masters or doctoral research project."
Call for Proposal: English (word, pdf) Deadline: August 30, 2023.
Article | Thread
OMF Australia "We take immense pride in announcing the gracious gift of $500,000 to Open Medicine Foundation Australia Limited (OMFAL) to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program." The gift is from the McCusker Charitable Foundation.
Article | Thread
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
.................
See next post for Research
Week beginning 31st July 2023
Part 2 of 2
Research
ME/CFS research
Journal of Medical Virology
A multicenter virome analysis of blood, feces, and saliva in ME/CFS - Briese et al.
"We found no consistent group‐specific differences other than a lower prevalence of anelloviruses in cases compared to healthy controls. Our findings suggest that future investigations into viral infections in ME/CFS should focus on adaptive immune responses rather than surveillance for viral gene products."
Article | Thread
Journal of Translational Medicine
Randomized, double-blinded, placebo-controlled pilot study: efficacy of faecal microbiota transplantation on chronic fatigue syndrome - Salonen et al.
In this small trial in Finland, 5 people with ME/CFS were given a single FMT dose and 6 were dosed using their own sample. No changes in symptoms or overall health occurred in either group over 6 months. The authors conclude: "FMT was safe but did not relieve symptoms or improve the HRQOL of patients with CFS. Small number of study subjects limits the generalizability of these results."
Article | Thread
Clinical Biomechanics
Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS - Retornaz et al.
"This retrospective study compared two groups of patients who presented (n = 30) or not (n = 28) alterations of M waves evoked by direct muscle stimulation during and after a cycling exercise bout." "Post-exercise changes in Maximal handgrip strength and M wave were positively correlated. The post exercise sarcolemma fatigue measured could be the cause of muscle failure in these patients."
Article | Thread
Preprint
The Potential Role of Ocular & Otolaryngological Mucus Proteins in ME/CFS -
Craddock et al
"Based on genetic analysis, and computational theory and modeling we hypothesize that mucin protein dysfunction may contribute to ME/CFS symptoms ... especially in the ocular and otolaryngological pathways leading to low grade chronic inflammation and the exacerbation of symptoms."
Preprint | Thread
Psychosomatic Medicine
DNA methylation signatures of functional somatic syndromes: Systematic review - Fischer et al
"Individuals with chronic fatigue syndrome and fibromyalgia syndrome appear to be characterised by altered DNA methylation of genes regulating cellular signalling and immune functioning."
Article | Thread
Rovira i Virgili University, Spain
Grief, corporality and violence: An Anthropological critique of biopsychiatric approaches to Chronic Fatigue Syndrome - Jenny Paola Becerra Castro.
This thesis criticises the biopsychiatric approach approach to ME/CFS using Galtung's theory of violence. In-depth interviews and digital focus groups were conducted.
Thesis | Thread
University of Miami
The Effects of Symptomatic and Intervention-Specific Heterogeneity on Outcomes for Patients with Chronic Fatigue Syndrome - Marcella May.
This dissertation evaluated Cognitive Behavioral Stress Management (CBSM) for patients diagnosed with CFS and their partners.
Thesis | Thread
Healthcare
Evaluation of a Webinar to Increase Health Professionals’ Knowledge about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - Froelich et al.
The authors tested a German webinar which appeared successful in increasing health professionals’ knowledge about ME/CFS.
Article | Thread
Health Expectations
‘I became more aware of my actions’—A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome - Keurulainen et al.
This Finish research group conducted interviews with 10 adult patients that had received a psychological group intervention for managing ME/CFS.
Article | Thread
Fatigue: Biomedicine, Health & Behavior
A population-based investigation into the prevalence of chronic fatigue syndrome in United States military Veterans with chronic pain - Adamowicz et al.
This study included Veterans Health Administration (VHA) data on 2,261,030 patients with chronic pain in 2018. A total of 15,248 (0.67%) of Veterans with CP also had a diagnosis of CFS.
Article | Thread
Long Covid research
Preprint: MedRxiv
Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for Up to Two Years Following COVID-19 — Michael J Peluso et al.
“Overall, these observations challenge the paradigm that COVID-19 is a transient acute viral infection and provide evidence for T cell activation and viral persistence in tissues well beyond the initial illness.”
Article | Thread
iScience
Extracellular vesicles in COVID-19 convalescence can regulate T cell metabolism and function — Molly S. George et al.
“We provide evidence that [extracellular vesicles] can modulate T cell responses several weeks post COVID-19 disease, impacting T cell activation, metabolic profile, and effector functions. Specifically following mild infection, EV are suppressive to T cell function.”
Article | Thread
Angiogenesis
VEGF-A plasma levels are associated with impaired DLCO and radiological sequelae in long COVID patients — Philippe et al.
“To the best of our knowledge, this is the first study to comprehensively examine a wide range of endothelial circulating biomarkers and evaluate pulmonary function in the context of PASC. Among the angiogenic biomarkers studied, VEGFA emerged as the most predictive marker for decreased DLCO and CT scan abnormalities.”
Article | Thread
Heliyon
Persistent immune and clotting dysfunction detected in saliva and blood plasma after COVID-19 — Hyesun Jang et al.
“Shotgun proteomics revealed persistent inflammatory patterns in convalescent samples including dysfunction of salivary innate immune cells, such as neutrophil markers (e.g., myeloperoxidase), and clotting factors in plasma (e.g., fibrinogen), with positive correlations to acute COVID-19 disease severity.”
Article | Thread
Nature Scientific Reports
The plasma metabolome of long COVID patients two years after infection — López-Hernández et al.
“Mitochondrial dysfunction, redox state imbalance, impaired energy metabolism, and chronic immune dysregulation are likely to be the main hallmarks of long COVID even two years after acute COVID-19 infection.”
Article | Thread
Expert Opinion on Investigational Drugs
Experimental drugs in randomized controlled trials for long-COVID: what’s in the pipeline? A systematic and critical review — Shin Jie Yong et al.
“We identified four completed and 22 ongoing RCTs, investigating 22 unique drugs. However, most drugs were deemed to not have high potential for treating long-COVID, according to three pre-specified domains, a testament to the ordeal of treating long-COVID.”
Article | Thread
Journal of Neurology
Pediatric de novo movement disorders and ataxia in the context of SARS-CoV-2 — Wilpert et al.
“Infection with SARS-CoV-2 can trigger de novo movement disorders and cerebellar impairment in children and adolescents, likely through post-viral humoral autoimmunity.” “Here, we identified CSF antibodies against structures of the basal ganglia, but details on the pathophysiology are yet to be discovered.”
Article | Thread
Journal of Neuroinflammation
Longitudinal positron emission tomography and postmortem analysis reveals widespread neuroinflammation in SARS-CoV-2 infected rhesus macaques — Nieuwland et al.
“To study these inflammatory responses we show the value of PET with [18 F]DPA714 as radiotracer to visualize SARS-CoV-2-associated glial and vascular changes in the brain over time”
Article | Thread
Wiener klinische Wochenschrift
Guide for the management of consequences of viral disease with SARS-CoV-2 from the point of view of occupational therapy - Costa et al.
This article, written in German, aims to provide recommendations for occupational therapy practice for patients infected by SARS-CoV-2.
Article | Thread
.......................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
Journal of Medical Virology
A multicenter virome analysis of blood, feces, and saliva in ME/CFS - Briese et al.
"We found no consistent group‐specific differences other than a lower prevalence of anelloviruses in cases compared to healthy controls. Our findings suggest that future investigations into viral infections in ME/CFS should focus on adaptive immune responses rather than surveillance for viral gene products."
Article | Thread
Journal of Translational Medicine
Randomized, double-blinded, placebo-controlled pilot study: efficacy of faecal microbiota transplantation on chronic fatigue syndrome - Salonen et al.
In this small trial in Finland, 5 people with ME/CFS were given a single FMT dose and 6 were dosed using their own sample. No changes in symptoms or overall health occurred in either group over 6 months. The authors conclude: "FMT was safe but did not relieve symptoms or improve the HRQOL of patients with CFS. Small number of study subjects limits the generalizability of these results."
Article | Thread
Clinical Biomechanics
Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS - Retornaz et al.
"This retrospective study compared two groups of patients who presented (n = 30) or not (n = 28) alterations of M waves evoked by direct muscle stimulation during and after a cycling exercise bout." "Post-exercise changes in Maximal handgrip strength and M wave were positively correlated. The post exercise sarcolemma fatigue measured could be the cause of muscle failure in these patients."
Article | Thread
Preprint
The Potential Role of Ocular & Otolaryngological Mucus Proteins in ME/CFS -
Craddock et al
"Based on genetic analysis, and computational theory and modeling we hypothesize that mucin protein dysfunction may contribute to ME/CFS symptoms ... especially in the ocular and otolaryngological pathways leading to low grade chronic inflammation and the exacerbation of symptoms."
Preprint | Thread
Psychosomatic Medicine
DNA methylation signatures of functional somatic syndromes: Systematic review - Fischer et al
"Individuals with chronic fatigue syndrome and fibromyalgia syndrome appear to be characterised by altered DNA methylation of genes regulating cellular signalling and immune functioning."
Article | Thread
Rovira i Virgili University, Spain
Grief, corporality and violence: An Anthropological critique of biopsychiatric approaches to Chronic Fatigue Syndrome - Jenny Paola Becerra Castro.
This thesis criticises the biopsychiatric approach approach to ME/CFS using Galtung's theory of violence. In-depth interviews and digital focus groups were conducted.
Thesis | Thread
University of Miami
The Effects of Symptomatic and Intervention-Specific Heterogeneity on Outcomes for Patients with Chronic Fatigue Syndrome - Marcella May.
This dissertation evaluated Cognitive Behavioral Stress Management (CBSM) for patients diagnosed with CFS and their partners.
Thesis | Thread
Healthcare
Evaluation of a Webinar to Increase Health Professionals’ Knowledge about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - Froelich et al.
The authors tested a German webinar which appeared successful in increasing health professionals’ knowledge about ME/CFS.
Article | Thread
Health Expectations
‘I became more aware of my actions’—A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome - Keurulainen et al.
This Finish research group conducted interviews with 10 adult patients that had received a psychological group intervention for managing ME/CFS.
Article | Thread
Fatigue: Biomedicine, Health & Behavior
A population-based investigation into the prevalence of chronic fatigue syndrome in United States military Veterans with chronic pain - Adamowicz et al.
This study included Veterans Health Administration (VHA) data on 2,261,030 patients with chronic pain in 2018. A total of 15,248 (0.67%) of Veterans with CP also had a diagnosis of CFS.
Article | Thread
Long Covid research
Preprint: MedRxiv
Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for Up to Two Years Following COVID-19 — Michael J Peluso et al.
“Overall, these observations challenge the paradigm that COVID-19 is a transient acute viral infection and provide evidence for T cell activation and viral persistence in tissues well beyond the initial illness.”
Article | Thread
iScience
Extracellular vesicles in COVID-19 convalescence can regulate T cell metabolism and function — Molly S. George et al.
“We provide evidence that [extracellular vesicles] can modulate T cell responses several weeks post COVID-19 disease, impacting T cell activation, metabolic profile, and effector functions. Specifically following mild infection, EV are suppressive to T cell function.”
Article | Thread
Angiogenesis
VEGF-A plasma levels are associated with impaired DLCO and radiological sequelae in long COVID patients — Philippe et al.
“To the best of our knowledge, this is the first study to comprehensively examine a wide range of endothelial circulating biomarkers and evaluate pulmonary function in the context of PASC. Among the angiogenic biomarkers studied, VEGFA emerged as the most predictive marker for decreased DLCO and CT scan abnormalities.”
Article | Thread
Heliyon
Persistent immune and clotting dysfunction detected in saliva and blood plasma after COVID-19 — Hyesun Jang et al.
“Shotgun proteomics revealed persistent inflammatory patterns in convalescent samples including dysfunction of salivary innate immune cells, such as neutrophil markers (e.g., myeloperoxidase), and clotting factors in plasma (e.g., fibrinogen), with positive correlations to acute COVID-19 disease severity.”
Article | Thread
Nature Scientific Reports
The plasma metabolome of long COVID patients two years after infection — López-Hernández et al.
“Mitochondrial dysfunction, redox state imbalance, impaired energy metabolism, and chronic immune dysregulation are likely to be the main hallmarks of long COVID even two years after acute COVID-19 infection.”
Article | Thread
Expert Opinion on Investigational Drugs
Experimental drugs in randomized controlled trials for long-COVID: what’s in the pipeline? A systematic and critical review — Shin Jie Yong et al.
“We identified four completed and 22 ongoing RCTs, investigating 22 unique drugs. However, most drugs were deemed to not have high potential for treating long-COVID, according to three pre-specified domains, a testament to the ordeal of treating long-COVID.”
Article | Thread
Journal of Neurology
Pediatric de novo movement disorders and ataxia in the context of SARS-CoV-2 — Wilpert et al.
“Infection with SARS-CoV-2 can trigger de novo movement disorders and cerebellar impairment in children and adolescents, likely through post-viral humoral autoimmunity.” “Here, we identified CSF antibodies against structures of the basal ganglia, but details on the pathophysiology are yet to be discovered.”
Article | Thread
Journal of Neuroinflammation
Longitudinal positron emission tomography and postmortem analysis reveals widespread neuroinflammation in SARS-CoV-2 infected rhesus macaques — Nieuwland et al.
“To study these inflammatory responses we show the value of PET with [18 F]DPA714 as radiotracer to visualize SARS-CoV-2-associated glial and vascular changes in the brain over time”
Article | Thread
Wiener klinische Wochenschrift
Guide for the management of consequences of viral disease with SARS-CoV-2 from the point of view of occupational therapy - Costa et al.
This article, written in German, aims to provide recommendations for occupational therapy practice for patients infected by SARS-CoV-2.
Article | Thread
.......................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 7th August 2023
News and advocacy
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
"We're seeking your views on an interim delivery plan to improve the experiences and outcomes of people with ME/CFS. This consultation closes at
11:59pm on 4 October 2023.
The consultation asks for your views on specific chapters and actions on: research, attitudes and education, living with ME/CFS, and language used in relation to ME/CFS. We’ll use the responses to help us understand: how well the plan identifies and addresses the issues most important to the ME/CFS community, where further action may be required."
Website | Plan | Consultation | Thread
The Times NHS told to stop blaming ME patients for being ill and improve care
A good article outlining the government plan:
"The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness. Doctors and medical students will be offered greater training as part of a national strategy vowing to “improve attitudes” to ME and “trust and listen to those with personal experience”."
The article quotes Sean O'Neill: "My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness."
O'Niell was also interviewed on Times Radio (starts 1:38:40)
Article | Archived article | Radio interview | Thread
The Massachusetts ME/CFS and FM Association August newsletter notes that ME/CFS advocates in Minnesota helped craft legislation that includes "comprehensive, statewide monitoring and support program for individuals suffering from Long COVID, ME/CFS, Dysautonomia, and POTS."
Newsletter | Thread
The Netherlands
After reviewing the decisions taken by ZonMw and carefully weighing the interests of ME/CFS patients, the Dutch ME/CFS Association has decided to file a pro forma appeal with the court. In this letter, the court is requested, among other things, to destroy ZonMw's decision on the pro-forma objection and to deal with it as well as to declare the objections well-founded.
Article | Thread
Germany
German Chancellor Scholz answered a question from a Long Covid patient, explaining this is a serious debilitating condition that needs more research and that he personally knows a young man lying in a dark room all day. He briefly discussed ways to speed up testing of new drugs for Long Covid.
Video | Thread
Germany
A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses and held signs. After the walk of 300 metres, there was a lying down demonstration. There were several press reports, even the public news in an evening television programme.
Photos | Thread
....................
Resources and articles
Clinician training
Dr. Nina Muirhead has produced a helpful short CPD module on severe ME/CFS. It is available free from Learna and takes about 10 minutes.
Course | Thread
Workwell Foundation I Have ME/CFS or Long COVID; Where do I go from here?
An informative introduction to ME and long COVID with emphasis on PEM/PESE, the importance of pacing and of avoiding graded exercise therapy.
Article l Thread
Book A Physiotherapist's Guide to Understanding and Managing ME/CFS
Karen Leslie, Michelle Bull, Nicola Clague-Baker and Natalie Hilliard (from Physios4ME) are launching a book on 21st August.
"This guide includes an in-depth explanation and history of ME/CFS whilst also describing symptoms, varying degrees of severity, and how to manage ME/CFS in children. It also provides detailed management advice and discussion on how the information can directly inform physiotherapy practice, supplemented with patient case studies."
Publisher's presentation l Thread
#NIETHERSTELD Interview with Anil van der Zee for severe M.E. Awareness Day 2023
An insightful interview with severe ME sufferer, professional dancer and forum member Anil van der Zee from his bed. He talks about his day-to-day life and raises the needs of severe ME sufferers. Duration: 32 minutes. English subtitles.
Interview YouTube l Thread
Broken Battery Very Severe ME/CFS
Another short and well made ME-video from Broken Battery. This time about very severe ME/CFS. Duration: 2.18 minutes.
Video l Thread
Healthcare Hubris blog by Joanne Hunt
Who is lobbying whom? Addendum: An eminent abuse of power
This article continues Hunt's research on the history of the psychosocial approach to ME/CFS in the UK, particularly the government's Disability Handbook of 1992 and the influence of Wessely, White and Aylward. The article concludes with: "However this dynamic is theorised, it is eminently clear (no pun intended) that (bio)psychosocial ascendency is rooted in abuse of power."
Article | Thread
Trial by Error by David Tuller More on the Perplexing Dutch Claim that Null results for Objective Measures of Physical Activity Are Irrelevant to Fatigue
On the justification from Professor Knoop et al concerning omitting actigraphy null results from the publication of the ReCOVer-trial on CBT as treatment of fatigue following Covid. In short summarised as an "embarrassment".
Article l Thread
Washington Post Long covid has derailed my life. Make no mistake: It could yours, too
Opinion piece by author and Long Covid sufferer Madeline Miller. She describes Long Covid and PEM, and writes about the struggle for more awareness and for proper health care. ".. the truth is that however immortal we feel, we are all just one infection away from a new life".
Article l Thread
Patient advocate Nina E. Steinkopf has collated 19 examples of poor quality ME studies describes how this has lead to stigma and harmful treatments.
Article l Thread
Long Covid Physio Pacing
"Pacing is the balance between rest and activities. This video describes pacing, provides tips on how to pace when living with an energy-limiting condition, and identifies some of the common barriers people may encounter when trying to successfully pace." Duration: 8.10 minutes
Video l Thread
The Century Foundation "A Paradigm Shift in Research for Infection-Associated Illnesses"
An article by Ryan Prior on the need for "an Office at the National Institutes of Health (NIH) solely dedicated to researching infection-associated chronic illness."
Article | Thread
ANZMES Episode 5 of the Know ME video podcast series
Lived and Professional Experience of ME and long COVID with Dr Asad Khan
Video | Thread
JNNP Rapid responses
Shortcomings in the commentary by White et al. - Dom Salisbury with Robert Saunders and Jonathan Edwards
As we reported last month, The BMJ Journal of Neurology, Neurosurgery and Psychiatry published an article criticising the 2021 NICE ME/CFS evidence review and guideline by White et al, supporters of the outdated CBT/GET approach to ME/CFS.
Salisbury's excellent response focuses on four main shortcomings: case definition, blinding and subjective outcomes, use of long-term follow up data, and evidence of harms.
Rapid response | Thread
World ME Alliance Standing Strong: Global ME Community unified in support of NICE 2021 ME/CFS Guideline
A copy of a rapid response submitted to the JNNP, signed by representatives of many ME organisations, including representatives of Science for ME. The response points out some of the inaccuracies in the White et al article, and support for the guideline by ME organisations worldwide. JNNP has, so far, not published it.
Article | Thread
............
Coming events
The Massachusetts ME/CFS & FM Association announced that Pulitzer Prize winning science writer Ed Yong will be guest speaker at their fall Annual Meeting, scheduled for Saturday, October 28, 1 to 3 PM Eastern Time. More details to come.
Announcement | Thread
............
Research
ME/CFS research
European Journal of Psychotherapy & Counselling
An exploration of victim blaming in ‘medically unexplained symptoms’: Neoliberalism and the need to justify the self, group and the system - Jo Hunt.
In this article, Hunt argues that "Narratives within mainstream psy disciplines around ‘medically unexplained symptoms’ (MUS), as constructed through (bio)psychosocial theorising, have been charged with promoting victim blaming."
Article | Thread
IOS Press
Development and measurement properties of the PEM/PESE activity questionnaire (PAQ) -Davenport et al.
More than 600 respondents filled in the questionnaire. Test-retest reliability was generally fair to excellent while ceiling and floor effects were noted infrequently.
Article | Thread
Quality of Life Research
Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments - Orji et al.
This online survey relied on participants' self-reports of ME/CFS diagnoses and found that ME/CFS have a severely reduced quality of life corresponding to an average score of 0.46 on the EQ-5D-5L questionnaire.
Article | Thread
Long Covid research
Science Translational Medicine
Core mitochondrial genes are down-regulated during SARS-CoV-2 infection of rodent and human hosts — Joseph W. Guarnieri et al.
“… the sustained partial inhibition of OXPHOS potentially could be a contributor to long COVID, with chronic inhibition of mitochondrial bioenergetics contributing to the chronic malaise associated with COVID-19.”
Article | Thread
Journal of Neuroinflammation
Differential effects of SARS-CoV-2 variants on central nervous system cells and blood–brain barrier functions — Proust et al.
“Altogether, our work suggests that SARS-CoV-2 affects the normal physiological functions of the BBB and its cellular components and thus contributes to the wide spectrum of neurological manifestations of SARSCoV-2 that have been observed clinically. More specifically, our results demonstrate that the WT virus and the Omicron variant may have a higher potential for neurological damage due to their ability to induce CNS cell stress, affect extracellular glutamate concentration, and damage BBB cellular components.”
Article | Thread
eClinicalMedicine
Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach — Owen et al.
“Similarly, in line with existing research that exercise may be detrimental for people with long COVID and ME/CFS, or PEM the panel disagreed that long COVID support mechanisms should include low-level physical activities that result in moderate increases in heart rate, activities incorporating muscle use, and support to increase flexibility and functional movement proficiency, but plans should be individualised and tailored to the needs of the patient. PESE and PEM are commonly experienced by those with long COVID and presents a significant challenge such as reduced capacity to work, and reduced physical and social functioning.”
Article | Thread
Journal of Magnetic Resonance Imaging
Review of Hyperpolarized Pulmonary Functional 129Xe MR for Long-COVID — Jim M. Wild et al.
“Pulmonary functional MRI using inhaled hyperpolarized 129 Xe gas has played a role in detecting gas-exchange and ventilation abnormalities providing complementary information that may help develop our understanding of the root causes of long-COVID.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News and advocacy
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
"We're seeking your views on an interim delivery plan to improve the experiences and outcomes of people with ME/CFS. This consultation closes at
11:59pm on 4 October 2023.
The consultation asks for your views on specific chapters and actions on: research, attitudes and education, living with ME/CFS, and language used in relation to ME/CFS. We’ll use the responses to help us understand: how well the plan identifies and addresses the issues most important to the ME/CFS community, where further action may be required."
Website | Plan | Consultation | Thread
The Times NHS told to stop blaming ME patients for being ill and improve care
A good article outlining the government plan:
"The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness. Doctors and medical students will be offered greater training as part of a national strategy vowing to “improve attitudes” to ME and “trust and listen to those with personal experience”."
The article quotes Sean O'Neill: "My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness."
O'Niell was also interviewed on Times Radio (starts 1:38:40)
Article | Archived article | Radio interview | Thread
The Massachusetts ME/CFS and FM Association August newsletter notes that ME/CFS advocates in Minnesota helped craft legislation that includes "comprehensive, statewide monitoring and support program for individuals suffering from Long COVID, ME/CFS, Dysautonomia, and POTS."
Newsletter | Thread
The Netherlands
After reviewing the decisions taken by ZonMw and carefully weighing the interests of ME/CFS patients, the Dutch ME/CFS Association has decided to file a pro forma appeal with the court. In this letter, the court is requested, among other things, to destroy ZonMw's decision on the pro-forma objection and to deal with it as well as to declare the objections well-founded.
Article | Thread
Germany
German Chancellor Scholz answered a question from a Long Covid patient, explaining this is a serious debilitating condition that needs more research and that he personally knows a young man lying in a dark room all day. He briefly discussed ways to speed up testing of new drugs for Long Covid.
Video | Thread
Germany
A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses and held signs. After the walk of 300 metres, there was a lying down demonstration. There were several press reports, even the public news in an evening television programme.
Photos | Thread
....................
Resources and articles
Clinician training
Dr. Nina Muirhead has produced a helpful short CPD module on severe ME/CFS. It is available free from Learna and takes about 10 minutes.
Course | Thread
Workwell Foundation I Have ME/CFS or Long COVID; Where do I go from here?
An informative introduction to ME and long COVID with emphasis on PEM/PESE, the importance of pacing and of avoiding graded exercise therapy.
Article l Thread
Book A Physiotherapist's Guide to Understanding and Managing ME/CFS
Karen Leslie, Michelle Bull, Nicola Clague-Baker and Natalie Hilliard (from Physios4ME) are launching a book on 21st August.
"This guide includes an in-depth explanation and history of ME/CFS whilst also describing symptoms, varying degrees of severity, and how to manage ME/CFS in children. It also provides detailed management advice and discussion on how the information can directly inform physiotherapy practice, supplemented with patient case studies."
Publisher's presentation l Thread
#NIETHERSTELD Interview with Anil van der Zee for severe M.E. Awareness Day 2023
An insightful interview with severe ME sufferer, professional dancer and forum member Anil van der Zee from his bed. He talks about his day-to-day life and raises the needs of severe ME sufferers. Duration: 32 minutes. English subtitles.
Interview YouTube l Thread
Broken Battery Very Severe ME/CFS
Another short and well made ME-video from Broken Battery. This time about very severe ME/CFS. Duration: 2.18 minutes.
Video l Thread
Healthcare Hubris blog by Joanne Hunt
Who is lobbying whom? Addendum: An eminent abuse of power
This article continues Hunt's research on the history of the psychosocial approach to ME/CFS in the UK, particularly the government's Disability Handbook of 1992 and the influence of Wessely, White and Aylward. The article concludes with: "However this dynamic is theorised, it is eminently clear (no pun intended) that (bio)psychosocial ascendency is rooted in abuse of power."
Article | Thread
Trial by Error by David Tuller More on the Perplexing Dutch Claim that Null results for Objective Measures of Physical Activity Are Irrelevant to Fatigue
On the justification from Professor Knoop et al concerning omitting actigraphy null results from the publication of the ReCOVer-trial on CBT as treatment of fatigue following Covid. In short summarised as an "embarrassment".
Article l Thread
Washington Post Long covid has derailed my life. Make no mistake: It could yours, too
Opinion piece by author and Long Covid sufferer Madeline Miller. She describes Long Covid and PEM, and writes about the struggle for more awareness and for proper health care. ".. the truth is that however immortal we feel, we are all just one infection away from a new life".
Article l Thread
Patient advocate Nina E. Steinkopf has collated 19 examples of poor quality ME studies describes how this has lead to stigma and harmful treatments.
Article l Thread
Long Covid Physio Pacing
"Pacing is the balance between rest and activities. This video describes pacing, provides tips on how to pace when living with an energy-limiting condition, and identifies some of the common barriers people may encounter when trying to successfully pace." Duration: 8.10 minutes
Video l Thread
The Century Foundation "A Paradigm Shift in Research for Infection-Associated Illnesses"
An article by Ryan Prior on the need for "an Office at the National Institutes of Health (NIH) solely dedicated to researching infection-associated chronic illness."
Article | Thread
ANZMES Episode 5 of the Know ME video podcast series
Lived and Professional Experience of ME and long COVID with Dr Asad Khan
Video | Thread
JNNP Rapid responses
Shortcomings in the commentary by White et al. - Dom Salisbury with Robert Saunders and Jonathan Edwards
As we reported last month, The BMJ Journal of Neurology, Neurosurgery and Psychiatry published an article criticising the 2021 NICE ME/CFS evidence review and guideline by White et al, supporters of the outdated CBT/GET approach to ME/CFS.
Salisbury's excellent response focuses on four main shortcomings: case definition, blinding and subjective outcomes, use of long-term follow up data, and evidence of harms.
Rapid response | Thread
World ME Alliance Standing Strong: Global ME Community unified in support of NICE 2021 ME/CFS Guideline
A copy of a rapid response submitted to the JNNP, signed by representatives of many ME organisations, including representatives of Science for ME. The response points out some of the inaccuracies in the White et al article, and support for the guideline by ME organisations worldwide. JNNP has, so far, not published it.
Article | Thread
............
Coming events
The Massachusetts ME/CFS & FM Association announced that Pulitzer Prize winning science writer Ed Yong will be guest speaker at their fall Annual Meeting, scheduled for Saturday, October 28, 1 to 3 PM Eastern Time. More details to come.
Announcement | Thread
............
Research
ME/CFS research
European Journal of Psychotherapy & Counselling
An exploration of victim blaming in ‘medically unexplained symptoms’: Neoliberalism and the need to justify the self, group and the system - Jo Hunt.
In this article, Hunt argues that "Narratives within mainstream psy disciplines around ‘medically unexplained symptoms’ (MUS), as constructed through (bio)psychosocial theorising, have been charged with promoting victim blaming."
Article | Thread
IOS Press
Development and measurement properties of the PEM/PESE activity questionnaire (PAQ) -Davenport et al.
More than 600 respondents filled in the questionnaire. Test-retest reliability was generally fair to excellent while ceiling and floor effects were noted infrequently.
Article | Thread
Quality of Life Research
Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments - Orji et al.
This online survey relied on participants' self-reports of ME/CFS diagnoses and found that ME/CFS have a severely reduced quality of life corresponding to an average score of 0.46 on the EQ-5D-5L questionnaire.
Article | Thread
Long Covid research
Science Translational Medicine
Core mitochondrial genes are down-regulated during SARS-CoV-2 infection of rodent and human hosts — Joseph W. Guarnieri et al.
“… the sustained partial inhibition of OXPHOS potentially could be a contributor to long COVID, with chronic inhibition of mitochondrial bioenergetics contributing to the chronic malaise associated with COVID-19.”
Article | Thread
Journal of Neuroinflammation
Differential effects of SARS-CoV-2 variants on central nervous system cells and blood–brain barrier functions — Proust et al.
“Altogether, our work suggests that SARS-CoV-2 affects the normal physiological functions of the BBB and its cellular components and thus contributes to the wide spectrum of neurological manifestations of SARSCoV-2 that have been observed clinically. More specifically, our results demonstrate that the WT virus and the Omicron variant may have a higher potential for neurological damage due to their ability to induce CNS cell stress, affect extracellular glutamate concentration, and damage BBB cellular components.”
Article | Thread
eClinicalMedicine
Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach — Owen et al.
“Similarly, in line with existing research that exercise may be detrimental for people with long COVID and ME/CFS, or PEM the panel disagreed that long COVID support mechanisms should include low-level physical activities that result in moderate increases in heart rate, activities incorporating muscle use, and support to increase flexibility and functional movement proficiency, but plans should be individualised and tailored to the needs of the patient. PESE and PEM are commonly experienced by those with long COVID and presents a significant challenge such as reduced capacity to work, and reduced physical and social functioning.”
Article | Thread
Journal of Magnetic Resonance Imaging
Review of Hyperpolarized Pulmonary Functional 129Xe MR for Long-COVID — Jim M. Wild et al.
“Pulmonary functional MRI using inhaled hyperpolarized 129 Xe gas has played a role in detecting gas-exchange and ventilation abnormalities providing complementary information that may help develop our understanding of the root causes of long-COVID.”
Article | Thread
.............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 14th August 2023
News and advocacy
Aotearoa New Zealand Parliament Select Committee Response to Petition
The Health Committee has considered the petition of Associated Myalgic Encephalomyelitis Society Incorporated—Reclassification of ME/CFS to disability—and recommends that the House take note of its report —
We agree that having ME/CFS classified within Whaikaha’s [Minstry of Disabled People] definition of a disability would validate people’s experiences and make them feel heard. We therefore encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.
Petition | Response | Thread
#MEAction posted an update about their work, including working with Mayo Clinic on medical education, urging the US Congress to establish a COVID-19 Task Force, working with media outlets to improve coverage of ME/CFS and Long Covid, and many more projects.
Article | Thread
Germany
The ME/CFS Research Foundation has announced its research funding strategy and its international scientific advisory board.
Article | Thread
Austria
"Artists severely affected by #MECFS have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna.
Article | Thread
JNNP Rapid responses
As we reported last month, The BMJ Journal of Neurology, Neurosurgery and Psychiatry published an article criticising the 2021 NICE ME/CFS evidence review and guideline by White et al. Only one response (Salisbury et al.) has been published, as we reported last week. The Science for ME forum has collated all responses, or links to responses, made available to us that were submitted.
These include, in no particular order, letters by the World ME Alliance, #MEActionUK, @Trish, @rvallee, @Joan Crawford, and Peter White (not the paper's author).
Thread
Trial by Error by David Tuller Rapid Response to Anti-NICE Whine de Coeur; UK Government Seeks Input to Interim Delivery Plan for ME/CFS
On the rapid response from Dom Salisbury et al in JNNP to a paper criticising the ME NICE guideline (see item above). Tuller also writes about an open consultation for the UK government's ME/CFS delivery plan.
"Notwithstanding the regressive thinking represented in the recent JNNP article from those on the losing side of the NICE debate, responsible policy-makers in the UK’s public health establishment appear to be looking forward in a manner much more likely to be beneficial to patients. Perhaps the tide has turned—at least a bit."
Article l Thread
UK Oxford University NHS Foundation Trust has a post advertised for a Clinical Psychologist - CFS & Renal. The job description refers to 'eliciting/discussing experiences of trauma or childhood abuse' and 'unconscious denial of psychological conflicts', and describes patients as 'hostile, antagonistic, highly anxious or psychotic'.
ME Association Dr Charles Shepherd has written to the Trust, quoting problems with the use of language to and about people with ME/CFS highlighted in the government's interim delivery plan. "I hope that you will therefore urgently remove the offensive language in this advert that puts the communication blame on patients rather than health professionals."
The Canary A disgraceful NHS trust just showed why people living with ME don’t trust medical professionals at all - Steve Topple
Points out that Professor Michael Sharpe is head of the trust, and that people with ME don't need the kind of psychological interventions described in the advert.
Job ad. | MEA | Canary | Thread
.............
Resources and articles
The Bateman Horne Center has a new video, "Post-Exertional Malaise (PEM/PESE): Cardiopulmonary Exercise Studies, Part 3 of 7." This series of videos is intended to help healthcare professionals recognize and understand PEM/PESE.
Video | Thread
Huffpost I Begged My Doctors To Figure Out What Was Wrong With Me. Instead, I Was Medically Gaslit.
Health communication specialist and writer Julie Strack on her experiences as a Long Covid sufferer and how this has given her "a firsthand look at the dismissal faced by patients, especially women, who have chronic illnesses" and that this is "a familiar story for many people with illnesses as chronic pain and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS".
Article l Thread
The Atlantic Fatigue Can Wreck You
Excellent interview with science journalist Ed Yong on ME, Long Covid, PEM, pacing, stigma and fatigue. "All the people I know who have long COVID and ME and who are also health-care professionals tell me that they never learned about these conditions when they were going through their training and were completely shocked to see for themselves that a body could lack energy in these profound ways."
The interview is available in text and audio versions.
Interview l Thread
..............
Coming events
USA NANDSC (National Institute of Neurologal Disorders and Stroke)
ME/CFS Research Roadmap Webinar Series
"Join an upcoming webinar to learn about current research, knowledge gaps, and future research opportunities for ME/CFS and contribute your ideas!"
The first webinar is Nervous System: August 25, 2023
Details | Thread
UK Royal College of Medicine: Long Covid webinar, 12:00pm to 2:30pm, 28 Sept 2023
Speakers from the Long Covid Multi-disciplinary Consortium to Optimise Treatments and Services across the NHS (LOCOMOTION)
Patients and carers can apply for discounted price tickets.
Details | Thread
...............
Research news
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Article by a participant | Thread
..............
Research
ME/CFS research
PNAS
WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome - Hwang, Nath et al
"This study shows that endoplasmic reticulum (ER) stress–induced WASF3 [Wiskott-Aldrich Syndrome Protein Family Member 3] protein localizes to mitochondria and disrupts respiratory supercomplex assembly, leading to decreased oxygen consumption and exercise endurance." Data came initially from a single patient. "Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/CFS showed increased WASF3 protein levels and aberrant ER stress activation."
Article | Thread
Science A protein that disrupt cell's energy centers may be a culprit in chronic fatigue syndrome
Article | Thread
Science Alert This Protein Could be Responsible For The Exhaustion in Chronic Fatigue Syndrome
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study - Clague-Baker et al.
This study assessed the feasibility and acceptability of a home-based testing protocol to measure physiological responses in ME to everyday activity.
Article | Thread
PLOS Pathogens
The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome - Maureen R. Hanson
Discussion under the headings: "Can any infection lead to ME/CFS?
Why is the enterovirus family the most likely culprit in ME/CFS?
What is the relationship between human herpesviruses (HHVs) and ME/CFS?
Should the post-SARS-CoV-2 infection syndromes be called “ME/CFS”?
Hanson concludes that more attention needs to be given to the role of the enterovirus family as prime candidates for causing ME/CFS.
Article | Thread
IOVS (US Veterans organisation journal of vision science)
Meeting abstract: Symptoms and signs of dry eye in US veterans with Myalgic encephalomyelitis/chronic fatigue syndrome - Sanchez et al.
"Conclusions : Individuals who met criteria for ME/CFS had more severe ocular surface pain, but similar signs of DE, compared to controls. This suggests that nerve, and not tear, abnormalities contribute to ocular surface pain in ME/CFS."
Abstract | Thread
SocArXiv Papers (preprint)
Contesting oppressive regimes of truth: A critical feminist re-examination of (bio)psychosocial hegemony in the field of myalgic encephalomyelitis / chronic fatigue syndrome - Joanne Hunt
This preprint article re-examines the ascendancy of psychosocial therapies and related practices through a critical feminist psychology and Foucauldian lens.
Article | Thread
MedrXiv (preprint)
A Scoping Review of ‘Pacing’ for Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Lessons Learned for the Long COVID Pandemic - Sanal-Hayes et al.
"Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing"
Article | Thread
Frontiers in Public Health
The demographic features of fatigue in the general population worldwide: a systematic review and meta-analysis - Yoon et al.
This review included 91 studies and found that the prevalence of general fatigue (fatigue lasting more than 6 months, or fatigue of unspecified duration) was 20.4% in adults.
Article | Thread
Medicine
Determinants of life dissatisfaction among adults in the United States: A cross-sectional analysis of the National Health Interview Survey - Bhattacharyya et al.
"Among subgroups of physical health characteristics, the highest percentage of adults dissatisfied with life was 32.9% among those self-reporting poor general health status, 22.2% in individuals with dementia, 20.7% in individuals with chronic fatigue syndrome, and 18.2% in individuals with a disability.
Article | Thread
Long Covid research
Annals of Clinical and Translational Neurology
The kynurenine pathway relates to post-acute COVID-19 objective cognitive impairment and PASC — Lucette A. Cysique et al.
“The pattern of activation of the KP was associated with poorer cognitive function, and greater likelihood of cognitive impairment over-time. Importantly, no other blood biomarkers, sex, or clinical factors (pre-existing mental health or mental health during the study period, olfaction, medical comorbidities, disease severity or respiratory function) were associated with cognition.”
Article | Thread
Circulation
Long COVID-19 Cardiac Complications Are Associated With Autoimmunity to Cardiac Self-Antigens Sufficient to Cause Cardiac Dysfunction — Marco Cremonesi et al.
“The pathogenesis of post–COVID-19 sequelae has many potential causal factors, including inflammation. Our data suggest self-reactive B cells may be significantly involved.”
Article | Thread
Nature Scientific Reports
Serum ferritin level during hospitalization is associated with Brain Fog after COVID-19 — Ishikura et al.
“We investigated the symptoms of Brain Fog after COVID-19 among patients admitted to our hospital via a questionnaire. Patients with Brain Fog 1 month after onset of COVID-19 had significantly higher peak ferritin levels during hospitalization than those without, and Brain Fog levels were positively correlated with peak ferritin levels during hospitalization.”
Article | Thread
Biochemical Journal
Are fibrinaloid microclots a cause of autoimmunity in Long Covid and other post-infection diseases? — Kell and Pretorius
“A chief premise of this review is that the anomalous folding of proteins in amyloid forms, and in particular of fibrinaloids, leads to the display of novel epitopes (neoepitopes or neoantigens) that — unlike their parent protein, which is seen as ‘self’ — can induce autoantibodies that may also attack the normal form of the target.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News and advocacy
Aotearoa New Zealand Parliament Select Committee Response to Petition
The Health Committee has considered the petition of Associated Myalgic Encephalomyelitis Society Incorporated—Reclassification of ME/CFS to disability—and recommends that the House take note of its report —
We agree that having ME/CFS classified within Whaikaha’s [Minstry of Disabled People] definition of a disability would validate people’s experiences and make them feel heard. We therefore encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.
Petition | Response | Thread
#MEAction posted an update about their work, including working with Mayo Clinic on medical education, urging the US Congress to establish a COVID-19 Task Force, working with media outlets to improve coverage of ME/CFS and Long Covid, and many more projects.
Article | Thread
Germany
The ME/CFS Research Foundation has announced its research funding strategy and its international scientific advisory board.
Article | Thread
Austria
"Artists severely affected by #MECFS have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna.
Article | Thread
JNNP Rapid responses
As we reported last month, The BMJ Journal of Neurology, Neurosurgery and Psychiatry published an article criticising the 2021 NICE ME/CFS evidence review and guideline by White et al. Only one response (Salisbury et al.) has been published, as we reported last week. The Science for ME forum has collated all responses, or links to responses, made available to us that were submitted.
These include, in no particular order, letters by the World ME Alliance, #MEActionUK, @Trish, @rvallee, @Joan Crawford, and Peter White (not the paper's author).
Thread
Trial by Error by David Tuller Rapid Response to Anti-NICE Whine de Coeur; UK Government Seeks Input to Interim Delivery Plan for ME/CFS
On the rapid response from Dom Salisbury et al in JNNP to a paper criticising the ME NICE guideline (see item above). Tuller also writes about an open consultation for the UK government's ME/CFS delivery plan.
"Notwithstanding the regressive thinking represented in the recent JNNP article from those on the losing side of the NICE debate, responsible policy-makers in the UK’s public health establishment appear to be looking forward in a manner much more likely to be beneficial to patients. Perhaps the tide has turned—at least a bit."
Article l Thread
UK Oxford University NHS Foundation Trust has a post advertised for a Clinical Psychologist - CFS & Renal. The job description refers to 'eliciting/discussing experiences of trauma or childhood abuse' and 'unconscious denial of psychological conflicts', and describes patients as 'hostile, antagonistic, highly anxious or psychotic'.
ME Association Dr Charles Shepherd has written to the Trust, quoting problems with the use of language to and about people with ME/CFS highlighted in the government's interim delivery plan. "I hope that you will therefore urgently remove the offensive language in this advert that puts the communication blame on patients rather than health professionals."
The Canary A disgraceful NHS trust just showed why people living with ME don’t trust medical professionals at all - Steve Topple
Points out that Professor Michael Sharpe is head of the trust, and that people with ME don't need the kind of psychological interventions described in the advert.
Job ad. | MEA | Canary | Thread
.............
Resources and articles
The Bateman Horne Center has a new video, "Post-Exertional Malaise (PEM/PESE): Cardiopulmonary Exercise Studies, Part 3 of 7." This series of videos is intended to help healthcare professionals recognize and understand PEM/PESE.
Video | Thread
Huffpost I Begged My Doctors To Figure Out What Was Wrong With Me. Instead, I Was Medically Gaslit.
Health communication specialist and writer Julie Strack on her experiences as a Long Covid sufferer and how this has given her "a firsthand look at the dismissal faced by patients, especially women, who have chronic illnesses" and that this is "a familiar story for many people with illnesses as chronic pain and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS".
Article l Thread
The Atlantic Fatigue Can Wreck You
Excellent interview with science journalist Ed Yong on ME, Long Covid, PEM, pacing, stigma and fatigue. "All the people I know who have long COVID and ME and who are also health-care professionals tell me that they never learned about these conditions when they were going through their training and were completely shocked to see for themselves that a body could lack energy in these profound ways."
The interview is available in text and audio versions.
Interview l Thread
..............
Coming events
USA NANDSC (National Institute of Neurologal Disorders and Stroke)
ME/CFS Research Roadmap Webinar Series
"Join an upcoming webinar to learn about current research, knowledge gaps, and future research opportunities for ME/CFS and contribute your ideas!"
The first webinar is Nervous System: August 25, 2023
Details | Thread
UK Royal College of Medicine: Long Covid webinar, 12:00pm to 2:30pm, 28 Sept 2023
Speakers from the Long Covid Multi-disciplinary Consortium to Optimise Treatments and Services across the NHS (LOCOMOTION)
Patients and carers can apply for discounted price tickets.
Details | Thread
...............
Research news
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Article by a participant | Thread
..............
Research
ME/CFS research
PNAS
WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome - Hwang, Nath et al
"This study shows that endoplasmic reticulum (ER) stress–induced WASF3 [Wiskott-Aldrich Syndrome Protein Family Member 3] protein localizes to mitochondria and disrupts respiratory supercomplex assembly, leading to decreased oxygen consumption and exercise endurance." Data came initially from a single patient. "Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/CFS showed increased WASF3 protein levels and aberrant ER stress activation."
Article | Thread
Science A protein that disrupt cell's energy centers may be a culprit in chronic fatigue syndrome
Article | Thread
Science Alert This Protein Could be Responsible For The Exhaustion in Chronic Fatigue Syndrome
Article | Thread
Fatigue: Biomedicine, Health & Behavior
Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study - Clague-Baker et al.
This study assessed the feasibility and acceptability of a home-based testing protocol to measure physiological responses in ME to everyday activity.
Article | Thread
PLOS Pathogens
The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome - Maureen R. Hanson
Discussion under the headings: "Can any infection lead to ME/CFS?
Why is the enterovirus family the most likely culprit in ME/CFS?
What is the relationship between human herpesviruses (HHVs) and ME/CFS?
Should the post-SARS-CoV-2 infection syndromes be called “ME/CFS”?
Hanson concludes that more attention needs to be given to the role of the enterovirus family as prime candidates for causing ME/CFS.
Article | Thread
IOVS (US Veterans organisation journal of vision science)
Meeting abstract: Symptoms and signs of dry eye in US veterans with Myalgic encephalomyelitis/chronic fatigue syndrome - Sanchez et al.
"Conclusions : Individuals who met criteria for ME/CFS had more severe ocular surface pain, but similar signs of DE, compared to controls. This suggests that nerve, and not tear, abnormalities contribute to ocular surface pain in ME/CFS."
Abstract | Thread
SocArXiv Papers (preprint)
Contesting oppressive regimes of truth: A critical feminist re-examination of (bio)psychosocial hegemony in the field of myalgic encephalomyelitis / chronic fatigue syndrome - Joanne Hunt
This preprint article re-examines the ascendancy of psychosocial therapies and related practices through a critical feminist psychology and Foucauldian lens.
Article | Thread
MedrXiv (preprint)
A Scoping Review of ‘Pacing’ for Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Lessons Learned for the Long COVID Pandemic - Sanal-Hayes et al.
"Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing"
Article | Thread
Frontiers in Public Health
The demographic features of fatigue in the general population worldwide: a systematic review and meta-analysis - Yoon et al.
This review included 91 studies and found that the prevalence of general fatigue (fatigue lasting more than 6 months, or fatigue of unspecified duration) was 20.4% in adults.
Article | Thread
Medicine
Determinants of life dissatisfaction among adults in the United States: A cross-sectional analysis of the National Health Interview Survey - Bhattacharyya et al.
"Among subgroups of physical health characteristics, the highest percentage of adults dissatisfied with life was 32.9% among those self-reporting poor general health status, 22.2% in individuals with dementia, 20.7% in individuals with chronic fatigue syndrome, and 18.2% in individuals with a disability.
Article | Thread
Long Covid research
Annals of Clinical and Translational Neurology
The kynurenine pathway relates to post-acute COVID-19 objective cognitive impairment and PASC — Lucette A. Cysique et al.
“The pattern of activation of the KP was associated with poorer cognitive function, and greater likelihood of cognitive impairment over-time. Importantly, no other blood biomarkers, sex, or clinical factors (pre-existing mental health or mental health during the study period, olfaction, medical comorbidities, disease severity or respiratory function) were associated with cognition.”
Article | Thread
Circulation
Long COVID-19 Cardiac Complications Are Associated With Autoimmunity to Cardiac Self-Antigens Sufficient to Cause Cardiac Dysfunction — Marco Cremonesi et al.
“The pathogenesis of post–COVID-19 sequelae has many potential causal factors, including inflammation. Our data suggest self-reactive B cells may be significantly involved.”
Article | Thread
Nature Scientific Reports
Serum ferritin level during hospitalization is associated with Brain Fog after COVID-19 — Ishikura et al.
“We investigated the symptoms of Brain Fog after COVID-19 among patients admitted to our hospital via a questionnaire. Patients with Brain Fog 1 month after onset of COVID-19 had significantly higher peak ferritin levels during hospitalization than those without, and Brain Fog levels were positively correlated with peak ferritin levels during hospitalization.”
Article | Thread
Biochemical Journal
Are fibrinaloid microclots a cause of autoimmunity in Long Covid and other post-infection diseases? — Kell and Pretorius
“A chief premise of this review is that the anomalous folding of proteins in amyloid forms, and in particular of fibrinaloids, leads to the display of novel epitopes (neoepitopes or neoantigens) that — unlike their parent protein, which is seen as ‘self’ — can induce autoantibodies that may also attack the normal form of the target.”
Article | Thread
..................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 21st August 2023
News and advocacy
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
Website | Plan | Consultation | Thread
ME Research UK has published a response to the research section of the UK government delivery plan. While they welcome some aspects, they express disappointment that there is no commitment to increase research funding for ME/CFS.
Article | Thread
UK ME Association responds to disappointing reply from Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert
Having received a response refusing to change the offensive job advertisement, (see last week's news) Dr Charles Shepherd replied that he will "raise my concerns with Professor Meghana Pandit, Chief Executive of the OUH NHS Trust."
Article | Thread
The Netherlands
On Saturday 2 September at 2 p.m., the Dutch radio program Argos on radio 1 will talk about the problems with the ME/CFS biomedical research program by ZonMw. ME/CFS patient Celine Corsius will be interviewed.
Thread
#MEAction and Long COVID Justice have issued a press statement expressing concerns about the planned clinical trials included in the NIH RECOVER research program.
Article | Thread
..............
Resources and articles
Trial by Error by David Tuller DecodeME Team Describes Study Sample; The Atlantic's Ed Yong Cover PEM; STAT Busts NIH's Stumbling Long Covid Efforts
On the DecodeME paper (see items below), Ed Yong's brilliant article on Post Exertional Malaise for The Atlantic, and a critical article from STAT's Betsy Ladyhetz on the lack of results from RECOVER, the Long Covid research initiative from USA.
Article l Thread
The Conversation Existential crisis: how long COVID patients helped us understand what it's like to lose your sense of identity and purpose in life
The authors summarise findings from three interview rounds in UK with 80 people with Long Covid.
"What seems remarkable is that the existential concerns shared with us transcended age, ethnicity, health and wealth, affecting individuals from all walks of life. In this, our study echoes previous research into people with chronic, acute and terminal illnesses, as well as of older people grappling with “feeling forgotten” and fading away, and of teenagers and middle-age individuals during major life-stage transitions."
Article l Thread
..............
Coming events
Australia 3rd ME/CFS & Long COVID International Conference 2023: RID- Research, Innovation & Discovery, hosted by the National Centre for Neuroimmunology and Emerging Diseases, Griffith University. 8th to 10th November 2023.
Abstract submissions open untll 4th October.
Dr Brian Walitt will be presenting as a Keynote Speaker.
Thread
..............
Research news
UK DecodeME newletter includes "... over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample... we are still only 75% of the way to reaching our goal, so we still need more participants!"
Take part | Spread the word | Thread
DecodeME study publication (see below)
UK Research and Innovation Study shows women more severely affected by ME/CFS
Quotes Chris Ponting: "ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started. Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others."
Further coverage includes: DecodeME blog | Guardian | Sky news |
Clip from Sky News | Independent | STV News website | Scottish Herald |
Good Morning Scotland from 43 minutes
...............
Research
ME/CFS research
NIHR Open Research
Typing myalgic encephalomyelitis by infection at onset: A DecodeME study - Bretherick et al
An analysis of questionnaire data from the first 17,000 participants in the DecodeME study. Results include: "83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity."
Paper | Thread
Work
A special section of the scientific journal Work provides insights into the overlap and differences between ME/CFS and Long Covid. Amy Mooney is Guest Editor of this curated collection.
Article | Thread
BMJ Open
Investigating the factors associated with meaningful improvement on the SF-36- PFS and exploring the appropriateness of this measure for young people with ME/CFS accessing an NHS specialist service: a prospective cohort study - Gaunt et al.
This paper describes the (lack of) improvements on the SF-36-Physical Function Subscale of young patients attending the ME/CFS clinic of Esther Crawley in the Southwest of England.
Article | Thread
Long Covid research
Neurology - Neuroimmunology Neuroinflammation
SARS-CoV-2–Specific Immune Responses in Patients With Postviral Syndrome After Suspected COVID-19 — Zachary S. Orban et al.
“Our data suggest that millions of Americans presenting with PVS resembling NeuroPASC were indeed exposed to SARS-CoV-2 at the beginning of the pandemic, and they deserve the same access to care and inclusion in research studies as patients with NP with confirmed COVID-19 diagnosis.”
Article | Thread
Nature Communications
Persistent symptoms after COVID-19 are not associated with differential SARS-CoV-2 antibody or T cell immunity — Altmann et al.
“Here, we analyze SARS-CoV-2 humoral and cellular immunity in 86 healthcare workers with laboratory confirmed mild or asymptomatic SARS-CoV-2 infection during the first wave.” “Thus, quantitative differences in these measured parameters of SARS-CoV-2 adaptive immunity following mild or asymptomatic acute infection are unlikely to have contributed to Long Covid causality.”
Article | Thread
Nature Medicine
Postacute sequelae of COVID-19 at 2 years — Bowe et al.
“Taken together the findings suggest that the risk horizon for postacute sequelae after SARS-CoV-2 infection is prolonged even among nonhospitalized individuals and is further prolonged among hospitalized individuals—highlighting the importance of reducing risk of hospitalization among people with SARS-CoV-2 infection (and reinfection) as a means to reduce the risk of long-term health loss.”
Article | Thread
Cell
Epigenetic memory of coronavirus infection in innate immune cells and their progenitors — Jin-Gyu Cheong et al.
“Our study indicates persisting post-infection transcriptional and epigenetic programs in monocytes (and their progenitors) associated with activation, differentiation, migration, and antigen presentation. These programs may contribute to ongoing pathology in tissues with inflammation and activated vasculature.”
Article | Thread
BMJ Case Reports CP
Reduced athletic performance post-COVID-19 is associated with reduced anaerobic threshold — Robert M Barker-Davies et al.
“Focusing exclusively on V̇O 2maximum risks missing an impairment of oxidative metabolism. Reduced [anaerobic threshold] suggests a peripheral disorder of aerobic metabolism. This finding may result from virally mediated mitochondrial dysfunction beyond normal ’deconditioning’, associated with impaired fat oxidation.”
Article | Thread
BMC Public Health
Long-term health consequences among individuals with SARS-CoV-2 infection compared to individuals without infection: results of the population-based cohort study CoMoLo Follow-up — Heidemann et al.
“Even after more than one year, individuals with SARS-CoV-2 infection showed an increased risk of various health complaints, functional limitations, and worse subjective well-being, pointing toward profound health consequences of SARS-CoV-2 infection relevant for public health.”
Article | Thread
Mayo Clinic Proceedings
Post-COVID Conditions — Michael R. Mueller et al.
“Perhaps the most common symptom in patients with PCC is fatigue associated with postexertional malaise.” ”Note that current guidelines for the treatment of ME/CFS do not include graded exercise therapy for patients with postexertional malaise.”
Article | Thread
BMJ
Pathophysiology, diagnosis, and management of neuroinflammation in covid-19 — Rachel L Brown et al.
Includes patient commentary — “As a doctor myself, I am all too aware of poorly understood clinical presentations. I now carefully frame how I tell a patient that their test results are normal. Instead I tell them that the results don’t explain their symptoms. This avoids a misunderstanding that I might think their symptoms are imagined or due to anxiety.”
Article | Thread
NEJM Evidence
Long-Term Dysfunction of Taste Papillae in SARS-CoV-2 — Qin Yao et al.
“We performed fungiform papillae biopsies on 16 patients who reported taste disturbance lasting more than 6 weeks after […] infection.” “In all patients, we found evidence of SARS-CoV-2, accompanying immune response and misshapen or absent taste buds with loss of intergemmal neurite fibers”
Article | Thread
Social Psychiatry and Psychiatric Epidemiology
Incidence of long COVID and associated psychosocial characteristics in a large U.S. city — Tsai et al.
“Residual effects of COVID-19 are very common and nearly one-fifth of our sample met the most restrictive definition of Long COVID warranting concern as a public health issue.”
Article | Thread
Antibodies
Psychiatric Symptoms in Acute and Persisting Forms of COVID-19 Associated with Neural Autoantibodies — Hansen
“In this narrative review, we focus on neural autoantibodies in patients with […] persisting symptoms of post-COVID-19 syndrome with a psychiatric presentation.”
Article | Thread
Preprint: MedRxiv
High proportions of post-exertional malaise and orthostatic intolerance in people living with post-COVID-19 condition: the PRIME post-COVID study — Demi M. E. Pagen et al.
“Data from 3,783 participants was analyzed. In PL-PCC, proportion of PEM was 48.1% and 41.2%, and proportion of OI was 29.3% and 27.9% in women and in men, respectively.”
Article | Thread
.................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News and advocacy
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
Website | Plan | Consultation | Thread
ME Research UK has published a response to the research section of the UK government delivery plan. While they welcome some aspects, they express disappointment that there is no commitment to increase research funding for ME/CFS.
Article | Thread
UK ME Association responds to disappointing reply from Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert
Having received a response refusing to change the offensive job advertisement, (see last week's news) Dr Charles Shepherd replied that he will "raise my concerns with Professor Meghana Pandit, Chief Executive of the OUH NHS Trust."
Article | Thread
The Netherlands
On Saturday 2 September at 2 p.m., the Dutch radio program Argos on radio 1 will talk about the problems with the ME/CFS biomedical research program by ZonMw. ME/CFS patient Celine Corsius will be interviewed.
Thread
#MEAction and Long COVID Justice have issued a press statement expressing concerns about the planned clinical trials included in the NIH RECOVER research program.
Article | Thread
..............
Resources and articles
Trial by Error by David Tuller DecodeME Team Describes Study Sample; The Atlantic's Ed Yong Cover PEM; STAT Busts NIH's Stumbling Long Covid Efforts
On the DecodeME paper (see items below), Ed Yong's brilliant article on Post Exertional Malaise for The Atlantic, and a critical article from STAT's Betsy Ladyhetz on the lack of results from RECOVER, the Long Covid research initiative from USA.
Article l Thread
The Conversation Existential crisis: how long COVID patients helped us understand what it's like to lose your sense of identity and purpose in life
The authors summarise findings from three interview rounds in UK with 80 people with Long Covid.
"What seems remarkable is that the existential concerns shared with us transcended age, ethnicity, health and wealth, affecting individuals from all walks of life. In this, our study echoes previous research into people with chronic, acute and terminal illnesses, as well as of older people grappling with “feeling forgotten” and fading away, and of teenagers and middle-age individuals during major life-stage transitions."
Article l Thread
..............
Coming events
Australia 3rd ME/CFS & Long COVID International Conference 2023: RID- Research, Innovation & Discovery, hosted by the National Centre for Neuroimmunology and Emerging Diseases, Griffith University. 8th to 10th November 2023.
Abstract submissions open untll 4th October.
Dr Brian Walitt will be presenting as a Keynote Speaker.
Thread
..............
Research news
UK DecodeME newletter includes "... over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample... we are still only 75% of the way to reaching our goal, so we still need more participants!"
Take part | Spread the word | Thread
DecodeME study publication (see below)
UK Research and Innovation Study shows women more severely affected by ME/CFS
Quotes Chris Ponting: "ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started. Our hope is that DecodeME’s genetic results will shed light on why certain groups are more susceptible to ME/CFS than others."
Further coverage includes: DecodeME blog | Guardian | Sky news |
Clip from Sky News | Independent | STV News website | Scottish Herald |
Good Morning Scotland from 43 minutes
...............
Research
ME/CFS research
NIHR Open Research
Typing myalgic encephalomyelitis by infection at onset: A DecodeME study - Bretherick et al
An analysis of questionnaire data from the first 17,000 participants in the DecodeME study. Results include: "83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity."
Paper | Thread
Work
A special section of the scientific journal Work provides insights into the overlap and differences between ME/CFS and Long Covid. Amy Mooney is Guest Editor of this curated collection.
Article | Thread
BMJ Open
Investigating the factors associated with meaningful improvement on the SF-36- PFS and exploring the appropriateness of this measure for young people with ME/CFS accessing an NHS specialist service: a prospective cohort study - Gaunt et al.
This paper describes the (lack of) improvements on the SF-36-Physical Function Subscale of young patients attending the ME/CFS clinic of Esther Crawley in the Southwest of England.
Article | Thread
Long Covid research
Neurology - Neuroimmunology Neuroinflammation
SARS-CoV-2–Specific Immune Responses in Patients With Postviral Syndrome After Suspected COVID-19 — Zachary S. Orban et al.
“Our data suggest that millions of Americans presenting with PVS resembling NeuroPASC were indeed exposed to SARS-CoV-2 at the beginning of the pandemic, and they deserve the same access to care and inclusion in research studies as patients with NP with confirmed COVID-19 diagnosis.”
Article | Thread
Nature Communications
Persistent symptoms after COVID-19 are not associated with differential SARS-CoV-2 antibody or T cell immunity — Altmann et al.
“Here, we analyze SARS-CoV-2 humoral and cellular immunity in 86 healthcare workers with laboratory confirmed mild or asymptomatic SARS-CoV-2 infection during the first wave.” “Thus, quantitative differences in these measured parameters of SARS-CoV-2 adaptive immunity following mild or asymptomatic acute infection are unlikely to have contributed to Long Covid causality.”
Article | Thread
Nature Medicine
Postacute sequelae of COVID-19 at 2 years — Bowe et al.
“Taken together the findings suggest that the risk horizon for postacute sequelae after SARS-CoV-2 infection is prolonged even among nonhospitalized individuals and is further prolonged among hospitalized individuals—highlighting the importance of reducing risk of hospitalization among people with SARS-CoV-2 infection (and reinfection) as a means to reduce the risk of long-term health loss.”
Article | Thread
Cell
Epigenetic memory of coronavirus infection in innate immune cells and their progenitors — Jin-Gyu Cheong et al.
“Our study indicates persisting post-infection transcriptional and epigenetic programs in monocytes (and their progenitors) associated with activation, differentiation, migration, and antigen presentation. These programs may contribute to ongoing pathology in tissues with inflammation and activated vasculature.”
Article | Thread
BMJ Case Reports CP
Reduced athletic performance post-COVID-19 is associated with reduced anaerobic threshold — Robert M Barker-Davies et al.
“Focusing exclusively on V̇O 2maximum risks missing an impairment of oxidative metabolism. Reduced [anaerobic threshold] suggests a peripheral disorder of aerobic metabolism. This finding may result from virally mediated mitochondrial dysfunction beyond normal ’deconditioning’, associated with impaired fat oxidation.”
Article | Thread
BMC Public Health
Long-term health consequences among individuals with SARS-CoV-2 infection compared to individuals without infection: results of the population-based cohort study CoMoLo Follow-up — Heidemann et al.
“Even after more than one year, individuals with SARS-CoV-2 infection showed an increased risk of various health complaints, functional limitations, and worse subjective well-being, pointing toward profound health consequences of SARS-CoV-2 infection relevant for public health.”
Article | Thread
Mayo Clinic Proceedings
Post-COVID Conditions — Michael R. Mueller et al.
“Perhaps the most common symptom in patients with PCC is fatigue associated with postexertional malaise.” ”Note that current guidelines for the treatment of ME/CFS do not include graded exercise therapy for patients with postexertional malaise.”
Article | Thread
BMJ
Pathophysiology, diagnosis, and management of neuroinflammation in covid-19 — Rachel L Brown et al.
Includes patient commentary — “As a doctor myself, I am all too aware of poorly understood clinical presentations. I now carefully frame how I tell a patient that their test results are normal. Instead I tell them that the results don’t explain their symptoms. This avoids a misunderstanding that I might think their symptoms are imagined or due to anxiety.”
Article | Thread
NEJM Evidence
Long-Term Dysfunction of Taste Papillae in SARS-CoV-2 — Qin Yao et al.
“We performed fungiform papillae biopsies on 16 patients who reported taste disturbance lasting more than 6 weeks after […] infection.” “In all patients, we found evidence of SARS-CoV-2, accompanying immune response and misshapen or absent taste buds with loss of intergemmal neurite fibers”
Article | Thread
Social Psychiatry and Psychiatric Epidemiology
Incidence of long COVID and associated psychosocial characteristics in a large U.S. city — Tsai et al.
“Residual effects of COVID-19 are very common and nearly one-fifth of our sample met the most restrictive definition of Long COVID warranting concern as a public health issue.”
Article | Thread
Antibodies
Psychiatric Symptoms in Acute and Persisting Forms of COVID-19 Associated with Neural Autoantibodies — Hansen
“In this narrative review, we focus on neural autoantibodies in patients with […] persisting symptoms of post-COVID-19 syndrome with a psychiatric presentation.”
Article | Thread
Preprint: MedRxiv
High proportions of post-exertional malaise and orthostatic intolerance in people living with post-COVID-19 condition: the PRIME post-COVID study — Demi M. E. Pagen et al.
“Data from 3,783 participants was analyzed. In PL-PCC, proportion of PEM was 48.1% and 41.2%, and proportion of OI was 29.3% and 27.9% in women and in men, respectively.”
Article | Thread
.................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 28th August 2023
Part 1 of 2
News and advocacy
Cochrane Exercise therapy for ME/CFS review
The S4ME committee has sent on behalf of members an Open Letter to Karla Soares-Weiser, editor-in-chief of Cochrane, requesting:
"1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions. AND
2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now. OR Abandonment of the new review process."
The letter and accompanying document provide a timeline with quotes from key people at Cochrane, showing that there has been none of the promised public consultation, and none of the promised monthly updates for the last two years. Individuals and organisations are invited to add their names to the list of supporters of the letter. There is an email address for non forum members to add their names.
Thread with copies of the letter, supporting document and list of supporters including how to add your name.
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
Website | Plan | Consultation | Thread
..............
Resources and articles
The Hill "After the pandemic ends, long COVID still needs congressional attention"
Opinion piece by senators Time Kaine (D-VA) and Todd Young (R-IN), and former senator Jim Inhofe (R-OK), urging the government to do more to "to help understand, prevent and treat long COVID."
Article | Thread
Denmark The weekly magazine Se&Hør has written a series of articles about ME with several stories from severe ME sufferers. They also write about how the disease wrongfully has been categorised as a "functional disorder", leading to harmful treatments. These articles have resulted in the Minister of Health being asked to explain why Danish ME patients are being treated this way.
Article with links to the other articles towards the end l Thread
NPR It's likely you know someone dealing with long COVID
Excellent audio interview with science journalist Ed Yong and co-founder of the Patient-Led Research Collaborative and LongCovid/ME sufferer Hannah Davis. Duration: 24 minutes.
Interview l Thread
The Netherlands
"Opinion article: Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline." A Dutch psychologist and ME patient argues that the current CFS guidelines that promote cognitive behavioral therapy, go against the Dutch Code of Ethics for Psychologists.
Article | Thread
ScienceAlert Viral Origins of Chronic Fatigue Syndrome May Be Hiding in Plain Sight
About the recent review paper in PLOS Pathogens from Maureen Hanson suggesting that enteroviruses might be the "most likely culprit" of ME/CFS.
Article l Thread
...............
Coming events
UK Chronic Illness Inclusion and researchers from two Liverpool universities.
"Challenging Disbelief and Disregard in the Lives of People living with Chronic Illness - A research project funded by BA/Leverhulme to look at the Experiences of People living with Chronic Illness and Energy Limiting Chronic Illness"
Webinar: Research findings launch: gender, health care + energy limiting conditions. Thursday, September 14, 2pm.
Project website | Webinar | Thread
USA IACCPAC Initiative
"Power of Community: Infection Associated Chronic Conditions Patient Advocacy Coalition Initiative Webinar"
The IACCPAC Initiative team presents findings from a new report about the needs and priorities of the infection-associated chronic conditions community.
Tuesday, October 24
12 pm Eastern / 9 am Pacific
Announcement | Registration | Thread
...............
Research news
Patient and Public Involvement opportunities in ME/CFS and other research - S4ME forum thread.
"As Patient and Public Involvement (PPI) in research becomes more widely accepted, and expected, by funders, there already is a growing need for PPI members with lived experience of ME/CFS, Long Covid and other related conditions.
This thread is intended as a space where requests for PPI members by researchers can be made."
Thread
Video recordings from the 2023 IACFS/ME Conference are now available for purchase. The price is $250 US for IACFS/ME members and $300 US for non-members.
Details | Thread
Icahn School of Medicine at Mount Sinai
Mount Sinai’s Center for Post-COVID Care is recruiting patients for a novel, multisite study that is investigating whether abnormal pituitary hormone levels are implicated in post-COVID fatigue.
Article | Thread
David M Tuller Interview about DecodeME with Professor Chris Ponting
"Professor Chris Ponting is a geneticist at the University of Edinburgh. He is also the principal investigator for DecodeME, a genome wide association study. The DecodeME team recently published findings from more than 17,000 questionnaires it had collected from patients. In our conversation, Professor Ponting discussed these results, why it is important to have patients involved in the research, and related issues." Duration: 23 minutes
YouTube video l Thread
UK DecodeME Many more UK people with ME/CFS are needed for this study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
...............
Fundraising
The Morton group at Oxford University is fundraising to support more research on Raman spectroscopy for diagnosing ME/CFS, to enable them to validate their research reported below.
Donate | Thread
..............
See part 2 for Research.
Part 1 of 2
News and advocacy
Cochrane Exercise therapy for ME/CFS review
The S4ME committee has sent on behalf of members an Open Letter to Karla Soares-Weiser, editor-in-chief of Cochrane, requesting:
"1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions. AND
2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now. OR Abandonment of the new review process."
The letter and accompanying document provide a timeline with quotes from key people at Cochrane, showing that there has been none of the promised public consultation, and none of the promised monthly updates for the last two years. Individuals and organisations are invited to add their names to the list of supporters of the letter. There is an email address for non forum members to add their names.
Thread with copies of the letter, supporting document and list of supporters including how to add your name.
UK Government Open consultation
Improving the experiences of people with ME/CFS: interim delivery plan
A reminder that the consultation ends on 4th October.
Website | Plan | Consultation | Thread
..............
Resources and articles
The Hill "After the pandemic ends, long COVID still needs congressional attention"
Opinion piece by senators Time Kaine (D-VA) and Todd Young (R-IN), and former senator Jim Inhofe (R-OK), urging the government to do more to "to help understand, prevent and treat long COVID."
Article | Thread
Denmark The weekly magazine Se&Hør has written a series of articles about ME with several stories from severe ME sufferers. They also write about how the disease wrongfully has been categorised as a "functional disorder", leading to harmful treatments. These articles have resulted in the Minister of Health being asked to explain why Danish ME patients are being treated this way.
Article with links to the other articles towards the end l Thread
NPR It's likely you know someone dealing with long COVID
Excellent audio interview with science journalist Ed Yong and co-founder of the Patient-Led Research Collaborative and LongCovid/ME sufferer Hannah Davis. Duration: 24 minutes.
Interview l Thread
The Netherlands
"Opinion article: Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline." A Dutch psychologist and ME patient argues that the current CFS guidelines that promote cognitive behavioral therapy, go against the Dutch Code of Ethics for Psychologists.
Article | Thread
ScienceAlert Viral Origins of Chronic Fatigue Syndrome May Be Hiding in Plain Sight
About the recent review paper in PLOS Pathogens from Maureen Hanson suggesting that enteroviruses might be the "most likely culprit" of ME/CFS.
Article l Thread
...............
Coming events
UK Chronic Illness Inclusion and researchers from two Liverpool universities.
"Challenging Disbelief and Disregard in the Lives of People living with Chronic Illness - A research project funded by BA/Leverhulme to look at the Experiences of People living with Chronic Illness and Energy Limiting Chronic Illness"
Webinar: Research findings launch: gender, health care + energy limiting conditions. Thursday, September 14, 2pm.
Project website | Webinar | Thread
USA IACCPAC Initiative
"Power of Community: Infection Associated Chronic Conditions Patient Advocacy Coalition Initiative Webinar"
The IACCPAC Initiative team presents findings from a new report about the needs and priorities of the infection-associated chronic conditions community.
Tuesday, October 24
12 pm Eastern / 9 am Pacific
Announcement | Registration | Thread
...............
Research news
Patient and Public Involvement opportunities in ME/CFS and other research - S4ME forum thread.
"As Patient and Public Involvement (PPI) in research becomes more widely accepted, and expected, by funders, there already is a growing need for PPI members with lived experience of ME/CFS, Long Covid and other related conditions.
This thread is intended as a space where requests for PPI members by researchers can be made."
Thread
Video recordings from the 2023 IACFS/ME Conference are now available for purchase. The price is $250 US for IACFS/ME members and $300 US for non-members.
Details | Thread
Icahn School of Medicine at Mount Sinai
Mount Sinai’s Center for Post-COVID Care is recruiting patients for a novel, multisite study that is investigating whether abnormal pituitary hormone levels are implicated in post-COVID fatigue.
Article | Thread
David M Tuller Interview about DecodeME with Professor Chris Ponting
"Professor Chris Ponting is a geneticist at the University of Edinburgh. He is also the principal investigator for DecodeME, a genome wide association study. The DecodeME team recently published findings from more than 17,000 questionnaires it had collected from patients. In our conversation, Professor Ponting discussed these results, why it is important to have patients involved in the research, and related issues." Duration: 23 minutes
YouTube video l Thread
UK DecodeME Many more UK people with ME/CFS are needed for this study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
...............
Fundraising
The Morton group at Oxford University is fundraising to support more research on Raman spectroscopy for diagnosing ME/CFS, to enable them to validate their research reported below.
Donate | Thread
..............
See part 2 for Research.
Week beginning 28th August 2023
Part 2 of 2
Research
ME/CFS research
Wiley Advanced Science
Developing a Blood Cell-Based Diagnostic Test for [ME/CFS] Using Peripheral Blood Mononuclear Cells - Jiabao Xu, Morton et al.
".. a single-cell Raman platform and artificial intelligence are utilized to analyze blood cells from 98 human subjects, including 61 ME/CFS patients of varying disease severity and 37 healthy and disease controls. These results demonstrate that Raman profiles of blood cells can distinguish between healthy individuals, disease controls, and ME/CFS patients with high accuracy (91%), and can further differentiate between mild, moderate, and severe ME/CFS patients (84%). Additionally, specific Raman peaks ... correlate with ME/CFS phenotypes.."
Article | Thread
Preprint
Dysregulation of extracellular vesicle protein cargo in female ME/CFS cases & sedentary controls in response to maximal exercise - Giloteaux et al
18 female ME/CFS patients and 17 matched controls tested before and after CPET. "Differentially abundant proteins in ME/CFS patients vs. controls were involved in many pathways and systems, including coagulation processes, muscle contraction (both smooth and skeletal muscle), cytoskeletal proteins, the immune system, and brain signaling."
Preprint | Thread
Scientific Reports
A synthetic data generation system for myalgic encephalomyelitis/chronic fatigue syndrome questionnaires - Lacasa et al.
The authors used machine learning on data from 2522 ME/CFS patients at the the Vall Hebron Hospital Specialized Unit in Barcelona, Spain. The final model requires SF-36 responses and returns responses from HAD, SCL-90R, FIS8, FIS40, and PSQI questionnaires.
Article | Thread
Frontiers in Immunology
Increased gut permeability and bacterial translocation are associated with fibromyalgia and [ME/CFS] implications for disease-related biomarker discovery - Martin et al.
"Biomarkers of intestinal barrier function and inflammation were associated with autonomic dysfunction assessed by COMPASS-31 scores in FM and ME/CFS respectively... Further studies are needed to assess whether these findings are causal and can therefore be applied in clinical practice."
Article | Thread
MedRxiv preprint
Observational Study of Repeat Immunoadsorption (RIA) in Post-COVID ME/CFS Patients with Elevated Beta-2-Adrenergic Receptor Autoantibodies - Stein, Scheibenbogen et al.
"... we report here the interim results of the first ten patients with seven responders defined by an increase of between 10 and 35 points in the Short-Form 36 Physical Function (SF36-PF) at week four after IA. The results of this observational study will provide the basis for patient selection for a randomised controlled trial (RTC) including sham apheresis and for a RTC combining IA with B-cell depletion therapy."
Preprint | Thread
Long Covid research
Nature Medicine
Acute blood biomarker profiles predict cognitive deficits 6 and 12 months after COVID-19 hospitalization — Taquet et al.
“This prospective cohort study of 1,837 patients hospitalized for COVID-19, augmented with a separate retrospective cohort study of EHR data, revealed two distinct dimensions linking acute blood biomarkers and post-acute cognitive deficits.” “Taken together, our findings regarding the first dimension of covariation might reflect a combination of hypercoagulable state and the direct effects of fibrinogen on the brain.”
Article | Thread
European Journal of Internal Medicine
The Long-COVID autonomic syndrome in hospitalized patients: A one-year prospective cohort study — Stefano Rigo et al.
“In a group of hospitalized patients with severe SARS CoV2, the overall autonomic symptoms measured by COMPASS-31 score followed a bi-phasic pattern over time. Symptoms worsened during the acute phase, improved from 1 to 3 months post-discharge, but aggravated at 6 and 12 months.”
Article | Thread
Lancet: eClinicalMedicine
Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome: results from a prospective observational cohort — Franziska Legler et al.
“Our findings suggest that PCS can persist beyond 20 months post-infection and encompass the full scope of post-infectious ME/CFS as defined by the CCC. Sub-classifying patients with PCS based on the CCC can assist in the management and monitoring of patients with PCS-ME/CFS due to their persistently higher symptom severity.”
Article | Thread
Nature Scientific Reports
SARS-CoV-2 spike protein induces endothelial inflammation via ACE2 independently of viral replication — Montezano et al.
“Endotheliitis has been described in COVID-19 patients, and molecular mechanisms involved are still under debate. Here we demonstrate that SARS-CoV-2 is a potent inducer of pro-inflammatory molecules, such as cytokines (IL-6, TNFα), chemokines (MCP-1), PAI-1 and adhesion molecules (ICAM-1, VCAM-1), and that it activates pro-inflammatory signalling through NFκB and ERK1/2 in endothelial cells.”
Article | Thread
Journal of Magnetic Resonance Imaging
Gray Matter Changes Following Mild COVID-19: An MR Morphometric Study in Healthy Young People — Gábor Perlaki et al.
“To investigate the chronic effects of COVID-19 on cerebral grey matter in a group of young patients without comorbidities, with mild course of COVID infection and no medical complaints at the time of examination.” “Even without any subjective or objective neurological complaints at the time of the MR scan, subjects in the COVID group showed gray matter alterations in cortical thickness and subcortical gray matter volume.”
Article | Thread
Heliyon
Accelerating discovery: A novel flow cytometric method for detecting fibrin(ogen) amyloid microclots using long COVID as a model — Simone Turner et al.
“This study represents a preliminary investigation into the detection of fibrin(ogen) amyloid microclots using imaging flow cytometry in Long COVID patients.”
Article | Thread
Nature Scientific Reports
Retrospective study of COVID-19 experiences in elite multinational aquatic athletes — Juhász et al.
“The majority reported mild (51%) or moderate (27%) symptoms, while 16% remained asymptomatic. Reinfection occurred in 13%, and 10% of initial infections led to long COVID, with fatigue (65%) and shortness of breath (48%) being the most common long-term symptoms.”
Article | Thread
The Journal of Pain
Prevalence and Risk Factors of de Novo Widespread Post-COVID Pain in Non-Hospitalized COVID-19 Survivors: A Nation-Wide Exploratory Population-Based Survey — Brian D. Ebbesen et al.
“In conclusion, de novo widespread post-COVID pain was present in 5.3% of non-hospitalized COVID-19 survivors one year after infection (14.4±6.0 months).”
Article | Thread
.................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research
ME/CFS research
Wiley Advanced Science
Developing a Blood Cell-Based Diagnostic Test for [ME/CFS] Using Peripheral Blood Mononuclear Cells - Jiabao Xu, Morton et al.
".. a single-cell Raman platform and artificial intelligence are utilized to analyze blood cells from 98 human subjects, including 61 ME/CFS patients of varying disease severity and 37 healthy and disease controls. These results demonstrate that Raman profiles of blood cells can distinguish between healthy individuals, disease controls, and ME/CFS patients with high accuracy (91%), and can further differentiate between mild, moderate, and severe ME/CFS patients (84%). Additionally, specific Raman peaks ... correlate with ME/CFS phenotypes.."
Article | Thread
Preprint
Dysregulation of extracellular vesicle protein cargo in female ME/CFS cases & sedentary controls in response to maximal exercise - Giloteaux et al
18 female ME/CFS patients and 17 matched controls tested before and after CPET. "Differentially abundant proteins in ME/CFS patients vs. controls were involved in many pathways and systems, including coagulation processes, muscle contraction (both smooth and skeletal muscle), cytoskeletal proteins, the immune system, and brain signaling."
Preprint | Thread
Scientific Reports
A synthetic data generation system for myalgic encephalomyelitis/chronic fatigue syndrome questionnaires - Lacasa et al.
The authors used machine learning on data from 2522 ME/CFS patients at the the Vall Hebron Hospital Specialized Unit in Barcelona, Spain. The final model requires SF-36 responses and returns responses from HAD, SCL-90R, FIS8, FIS40, and PSQI questionnaires.
Article | Thread
Frontiers in Immunology
Increased gut permeability and bacterial translocation are associated with fibromyalgia and [ME/CFS] implications for disease-related biomarker discovery - Martin et al.
"Biomarkers of intestinal barrier function and inflammation were associated with autonomic dysfunction assessed by COMPASS-31 scores in FM and ME/CFS respectively... Further studies are needed to assess whether these findings are causal and can therefore be applied in clinical practice."
Article | Thread
MedRxiv preprint
Observational Study of Repeat Immunoadsorption (RIA) in Post-COVID ME/CFS Patients with Elevated Beta-2-Adrenergic Receptor Autoantibodies - Stein, Scheibenbogen et al.
"... we report here the interim results of the first ten patients with seven responders defined by an increase of between 10 and 35 points in the Short-Form 36 Physical Function (SF36-PF) at week four after IA. The results of this observational study will provide the basis for patient selection for a randomised controlled trial (RTC) including sham apheresis and for a RTC combining IA with B-cell depletion therapy."
Preprint | Thread
Long Covid research
Nature Medicine
Acute blood biomarker profiles predict cognitive deficits 6 and 12 months after COVID-19 hospitalization — Taquet et al.
“This prospective cohort study of 1,837 patients hospitalized for COVID-19, augmented with a separate retrospective cohort study of EHR data, revealed two distinct dimensions linking acute blood biomarkers and post-acute cognitive deficits.” “Taken together, our findings regarding the first dimension of covariation might reflect a combination of hypercoagulable state and the direct effects of fibrinogen on the brain.”
Article | Thread
European Journal of Internal Medicine
The Long-COVID autonomic syndrome in hospitalized patients: A one-year prospective cohort study — Stefano Rigo et al.
“In a group of hospitalized patients with severe SARS CoV2, the overall autonomic symptoms measured by COMPASS-31 score followed a bi-phasic pattern over time. Symptoms worsened during the acute phase, improved from 1 to 3 months post-discharge, but aggravated at 6 and 12 months.”
Article | Thread
Lancet: eClinicalMedicine
Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome: results from a prospective observational cohort — Franziska Legler et al.
“Our findings suggest that PCS can persist beyond 20 months post-infection and encompass the full scope of post-infectious ME/CFS as defined by the CCC. Sub-classifying patients with PCS based on the CCC can assist in the management and monitoring of patients with PCS-ME/CFS due to their persistently higher symptom severity.”
Article | Thread
Nature Scientific Reports
SARS-CoV-2 spike protein induces endothelial inflammation via ACE2 independently of viral replication — Montezano et al.
“Endotheliitis has been described in COVID-19 patients, and molecular mechanisms involved are still under debate. Here we demonstrate that SARS-CoV-2 is a potent inducer of pro-inflammatory molecules, such as cytokines (IL-6, TNFα), chemokines (MCP-1), PAI-1 and adhesion molecules (ICAM-1, VCAM-1), and that it activates pro-inflammatory signalling through NFκB and ERK1/2 in endothelial cells.”
Article | Thread
Journal of Magnetic Resonance Imaging
Gray Matter Changes Following Mild COVID-19: An MR Morphometric Study in Healthy Young People — Gábor Perlaki et al.
“To investigate the chronic effects of COVID-19 on cerebral grey matter in a group of young patients without comorbidities, with mild course of COVID infection and no medical complaints at the time of examination.” “Even without any subjective or objective neurological complaints at the time of the MR scan, subjects in the COVID group showed gray matter alterations in cortical thickness and subcortical gray matter volume.”
Article | Thread
Heliyon
Accelerating discovery: A novel flow cytometric method for detecting fibrin(ogen) amyloid microclots using long COVID as a model — Simone Turner et al.
“This study represents a preliminary investigation into the detection of fibrin(ogen) amyloid microclots using imaging flow cytometry in Long COVID patients.”
Article | Thread
Nature Scientific Reports
Retrospective study of COVID-19 experiences in elite multinational aquatic athletes — Juhász et al.
“The majority reported mild (51%) or moderate (27%) symptoms, while 16% remained asymptomatic. Reinfection occurred in 13%, and 10% of initial infections led to long COVID, with fatigue (65%) and shortness of breath (48%) being the most common long-term symptoms.”
Article | Thread
The Journal of Pain
Prevalence and Risk Factors of de Novo Widespread Post-COVID Pain in Non-Hospitalized COVID-19 Survivors: A Nation-Wide Exploratory Population-Based Survey — Brian D. Ebbesen et al.
“In conclusion, de novo widespread post-COVID pain was present in 5.3% of non-hospitalized COVID-19 survivors one year after infection (14.4±6.0 months).”
Article | Thread
.................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
For next month's news go to this thread:
News in Brief - September 2023
News in Brief - September 2023