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News in Brief - December 2023
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Week beginning 27th November 2023
News, advocacy and media
Action for ME Podcast: Learn about M.E. and Paediatrics
"Hear from consultant Dr Binita Kane how her experience of her and her family’s health has made her reconsider her understanding of post-viral illnesses like M.E. and Long COVID, alongside insight and guidance from Helen Gibson, whose teenage daughter has M.E."
Podcast l Thread
#MEAction A Year of Exciting Medical Education Achievements
An update on medical education projects. Highlights include a Concise Clinical Review called Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (published in the Mayo Clinic Proceedings), a video-based CME (continuing medical education) series, and a new diagnostic and treatment algorithm for ME/CFS on AskMayoExpert.
Article | Thread
S4ME complaints to Cochrane
There has been no reply yet from Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team to the S4ME letter of 20th November.
The petition remains open and the S4ME committee are considering their next step.
Letter | Petition | Thread
Sabine Hossenfelder Long COVID: All you need to know
Dr. Hossenfelder is a physicist and science communicator. In this 20 minute long YouTube video she provides a broad introduction to Long Covid which also includes mentions of ME/CFS.
Video l Thread
New Scientist Long covid: What we now know about its causes and possible treatments
On current working hypotheses regarding long Covid. Includes interview with David Putrino who says "I think the interventional landscape is certainly a lot more exciting and interesting than it was a year ago" and Dr. Amy Proal who says she thinks viral persistence may be a key to long covid as an upstream driver.
Article (archived) l Thread
The New York Times How Viral Infections Cause Long-Term Health Problems
A general article on post viral illness, with a couple of mentions of ME. "Scientists have long known that infection can set the body down the path of autoimmune disease. The classic example is Epstein-Barr virus".
Article (gift link) l Thread
Technology Networks Long COVID Research Is a Bit of a Mess
On current status on Long Covid research. 386 trials on Long Covid are underway, but only 94 of those are interventional "...and only 12 trials were testing pharmacological interventions; the rest were testing the effects of food supplements, psychological support, acupuncture and other non-drugs". The article also has a paragraph titled "The ME in the room" and argues: ".. if ME had been studied more thoroughly - or even just believed years ago, much of the foundational work of long COVID research may already have been achieved".
Article l Thread
..............
Coming events
USA NIH Conference Registration is open for the NIH ME/CFS Research Conference "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID,” on December 12-13, 2023 at NIH Campus in Bethesda, MD. This will be a hybrid in-person and online meeting.
Details | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, December 5, 1:00 - 2:00 PM Mountain Time
Topic: Improving the Holiday Moments While Ill
Tuesday, December 12, 1:00 - 2:00 PM Mountain Time
Topic: Grounding
Advance registration required.
Event Calendar | Thread
Solve M.E. webinar - The Patient-Doctor Partnership
Thursday, December 7, Noon Pacific Time / 3 PM Eastern Time
Solve M.E. welcomes three medical providers who will share their experience with treating Long Covid, ME/CFS, POTS, and dysautonomia patients across rural, urban, and suburban settings.
Announcement | Thread
USA - CDC Stakeholder Engagement and Communication (SEC) Call
Monday, December 18, Noon Pacific Time / 3 PM Eastern Time
Regular SEC call to update the ME/CFS community on CDC activities.
Announcement | Thread
..............
Research news
UK DecodeME
A reminder to participants who have been asked to provide a saliva sample for genetic testing to return their spit kit by 31st January.
Webinar Genomics and Genetic Susceptibilities: Professor Chris Ponting's talk as part of the NIH ME/CFS Research Roadmap Webinar Series on 1st November is now available on YouTube at 11:57 - 49:35 minutes.
Video | Thread
Visible Introducing: David Putrino’s Research Study
Short article introducing the new in-app research study using data from users of the Visible app. "The research team are particularly interested in the relationship between biometrics, like Heart Rate Variability, and symptoms."
Article | Thread
Germany
Journalist Martin Rücker has posted his impressions of the recent Long Covid congress in Jena, Germany. There were more than 60 scientific lectures with more than 3000 participants (on site and online).
Post | Thread
The Netherlands
The UMC UTrecht is offering a position for an PhD-student to work in a multidisciplinary team that is studying the pathophysiological mechanisms underlying ME/CFS and building a Dutch pediatric ME/CFS cohort.
Article | Thread
..............
Research
ME/CFS research
Journal of Pain Research
DNA Methylation Changes in Blood Cells of Fibromyalgia and Chronic Fatigue Syndrome Patients - Przybylowicz et al
"Methylomes of the blood cells of patients with FM and CFS in three independent studies have shown methylation changes that appear to be implicated in the pathogenesis of these syndromes."
Article | Thread
Frontiers in Immunology
Exploring the Joint Potential of Inflammation, Immunity, and Receptor-Based Biomarkers for Evaluating ME/CFS Progression - Berkis et al
Statistical analysis and random forest modelling using data from 134 people with ME/CFS and 54 controls. "Association between inflammatome and immunome markers is a candidate for controlled clinical study of ME/CFS progression markers that could be used for treatment individualization."
Article | Thread
Molecular Neurobiology
Dysregulation of the Kynurenine Pathway, Cytokine Expression Pattern, and Proteomics Profile Link to Symptomology in ME/CFS - Kavyani et al.
Patient (59 cases) and healthy control plasma was analysed in a series of tests. "Here, we report that plasma levels of most bioactive KP metabolites differed significantly between ME/CFS patients and healthy controls in a manner consistent with their known contribution to symptomology in other neurological disorders."
Article | Thread
Biochemistry
Catalytic Antibodies May Contribute to Demyelination in ME/CFS - Jensen et al
Compared 19 ME/CFS, 19 healthy control and 3 MS plasma samples in a series of tests and found differences in some of the ME/CFS samples from health controls.
Article | Thread
Autoimmunity Reviews
Brain-regional characteristics and neuroinflammation in ME/CFS patients from neuroimaging: A systematic review and meta-analysis - Lee et al
"Regional alterations were most frequently identified in the cerebral cortex, with a notable focus on the frontal cortex. However, our meta-analysis data revealed a significant hypoactivity in the insular and thalamic regions.." Forum discussion raises concerns about the authors' interpretation of the data.
Article | Thread
UK ME Association Research Review: Mortality in ME/CFS
Office for National Statistics data between 2001 and 2021 shows 150 deaths in England and Wales were partly or fully attributable to ME/CFS. The most common causes of death attributable to ME/CFS are malnutrition and suicide.
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 Finnish research group has developed its own psychological group intervention for ME/CFS. In the current paper, they published findings of interviews they conducted with patients who underwent the intervention and found it 'useful and not harmful'.
Article | Thread
Clinical Leader
Identifying Digital Endpoints For Fatigue To Drive Better Clinical Care And Treatments - Michele Veldsman
This article provides more background on: IDEA-FAST, a consortium of 46 partners spanning 15 countries that aims to develop digital biomarkers for fatigue and sleep disturbances and track their relationship to activities of daily living and health-related quality of life.
Article | Thread
Fatigue, Biomedicine Health and Behavior
An international survey of experiences and attitudes towards transcutaneous auricular vagus nerve stimulation for people with Myalgic Encephalomyelitis/chronic fatigue syndrome - Leslie et al.
The authors conducted an online survey on transcutaneous auricular vagus nerve stimulation for ME/CFS. 116 responses were received. 56% of respondents reported favourable effects.
Article | Thread
Long Covid research
JAMA Network Open
Gray Matter Thickness and Subcortical Nuclear Volume in Men After SARS-CoV-2 Omicron Infection — Yanyao Du et al.
“In this cohort study of 61 male patients with Omicron infection, the gray matter thickness in the left precuneus and right lateral occipital region and the ratio of the right hippocampus volume to the total intracranial volume were significantly reduced in the acute phase. Gray matter thickness and subcortical nuclear volume injury were significantly associated with anxiety and cognitive function.”
Article | Thread
The Journal of Nervous and Mental Disease
Drawing the Line Between Postacute Sequelae of COVID-19 and Functional Neurologic Disorders. A Daunting Clinical Overlap or Irrelevant Conundrum? - Sales et al.
"This review summarizes the literature on the overlapping nature and discrimination of PASC from FND in COVID-19 survivors."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
Action for ME Podcast: Learn about M.E. and Paediatrics
"Hear from consultant Dr Binita Kane how her experience of her and her family’s health has made her reconsider her understanding of post-viral illnesses like M.E. and Long COVID, alongside insight and guidance from Helen Gibson, whose teenage daughter has M.E."
Podcast l Thread
#MEAction A Year of Exciting Medical Education Achievements
An update on medical education projects. Highlights include a Concise Clinical Review called Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (published in the Mayo Clinic Proceedings), a video-based CME (continuing medical education) series, and a new diagnostic and treatment algorithm for ME/CFS on AskMayoExpert.
Article | Thread
S4ME complaints to Cochrane
There has been no reply yet from Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team to the S4ME letter of 20th November.
The petition remains open and the S4ME committee are considering their next step.
Letter | Petition | Thread
Sabine Hossenfelder Long COVID: All you need to know
Dr. Hossenfelder is a physicist and science communicator. In this 20 minute long YouTube video she provides a broad introduction to Long Covid which also includes mentions of ME/CFS.
Video l Thread
New Scientist Long covid: What we now know about its causes and possible treatments
On current working hypotheses regarding long Covid. Includes interview with David Putrino who says "I think the interventional landscape is certainly a lot more exciting and interesting than it was a year ago" and Dr. Amy Proal who says she thinks viral persistence may be a key to long covid as an upstream driver.
Article (archived) l Thread
The New York Times How Viral Infections Cause Long-Term Health Problems
A general article on post viral illness, with a couple of mentions of ME. "Scientists have long known that infection can set the body down the path of autoimmune disease. The classic example is Epstein-Barr virus".
Article (gift link) l Thread
Technology Networks Long COVID Research Is a Bit of a Mess
On current status on Long Covid research. 386 trials on Long Covid are underway, but only 94 of those are interventional "...and only 12 trials were testing pharmacological interventions; the rest were testing the effects of food supplements, psychological support, acupuncture and other non-drugs". The article also has a paragraph titled "The ME in the room" and argues: ".. if ME had been studied more thoroughly - or even just believed years ago, much of the foundational work of long COVID research may already have been achieved".
Article l Thread
..............
Coming events
USA NIH Conference Registration is open for the NIH ME/CFS Research Conference "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID,” on December 12-13, 2023 at NIH Campus in Bethesda, MD. This will be a hybrid in-person and online meeting.
Details | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, December 5, 1:00 - 2:00 PM Mountain Time
Topic: Improving the Holiday Moments While Ill
Tuesday, December 12, 1:00 - 2:00 PM Mountain Time
Topic: Grounding
Advance registration required.
Event Calendar | Thread
Solve M.E. webinar - The Patient-Doctor Partnership
Thursday, December 7, Noon Pacific Time / 3 PM Eastern Time
Solve M.E. welcomes three medical providers who will share their experience with treating Long Covid, ME/CFS, POTS, and dysautonomia patients across rural, urban, and suburban settings.
Announcement | Thread
USA - CDC Stakeholder Engagement and Communication (SEC) Call
Monday, December 18, Noon Pacific Time / 3 PM Eastern Time
Regular SEC call to update the ME/CFS community on CDC activities.
Announcement | Thread
..............
Research news
UK DecodeME
A reminder to participants who have been asked to provide a saliva sample for genetic testing to return their spit kit by 31st January.
Webinar Genomics and Genetic Susceptibilities: Professor Chris Ponting's talk as part of the NIH ME/CFS Research Roadmap Webinar Series on 1st November is now available on YouTube at 11:57 - 49:35 minutes.
Video | Thread
Visible Introducing: David Putrino’s Research Study
Short article introducing the new in-app research study using data from users of the Visible app. "The research team are particularly interested in the relationship between biometrics, like Heart Rate Variability, and symptoms."
Article | Thread
Germany
Journalist Martin Rücker has posted his impressions of the recent Long Covid congress in Jena, Germany. There were more than 60 scientific lectures with more than 3000 participants (on site and online).
Post | Thread
The Netherlands
The UMC UTrecht is offering a position for an PhD-student to work in a multidisciplinary team that is studying the pathophysiological mechanisms underlying ME/CFS and building a Dutch pediatric ME/CFS cohort.
Article | Thread
..............
Research
ME/CFS research
Journal of Pain Research
DNA Methylation Changes in Blood Cells of Fibromyalgia and Chronic Fatigue Syndrome Patients - Przybylowicz et al
"Methylomes of the blood cells of patients with FM and CFS in three independent studies have shown methylation changes that appear to be implicated in the pathogenesis of these syndromes."
Article | Thread
Frontiers in Immunology
Exploring the Joint Potential of Inflammation, Immunity, and Receptor-Based Biomarkers for Evaluating ME/CFS Progression - Berkis et al
Statistical analysis and random forest modelling using data from 134 people with ME/CFS and 54 controls. "Association between inflammatome and immunome markers is a candidate for controlled clinical study of ME/CFS progression markers that could be used for treatment individualization."
Article | Thread
Molecular Neurobiology
Dysregulation of the Kynurenine Pathway, Cytokine Expression Pattern, and Proteomics Profile Link to Symptomology in ME/CFS - Kavyani et al.
Patient (59 cases) and healthy control plasma was analysed in a series of tests. "Here, we report that plasma levels of most bioactive KP metabolites differed significantly between ME/CFS patients and healthy controls in a manner consistent with their known contribution to symptomology in other neurological disorders."
Article | Thread
Biochemistry
Catalytic Antibodies May Contribute to Demyelination in ME/CFS - Jensen et al
Compared 19 ME/CFS, 19 healthy control and 3 MS plasma samples in a series of tests and found differences in some of the ME/CFS samples from health controls.
Article | Thread
Autoimmunity Reviews
Brain-regional characteristics and neuroinflammation in ME/CFS patients from neuroimaging: A systematic review and meta-analysis - Lee et al
"Regional alterations were most frequently identified in the cerebral cortex, with a notable focus on the frontal cortex. However, our meta-analysis data revealed a significant hypoactivity in the insular and thalamic regions.." Forum discussion raises concerns about the authors' interpretation of the data.
Article | Thread
UK ME Association Research Review: Mortality in ME/CFS
Office for National Statistics data between 2001 and 2021 shows 150 deaths in England and Wales were partly or fully attributable to ME/CFS. The most common causes of death attributable to ME/CFS are malnutrition and suicide.
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 Finnish research group has developed its own psychological group intervention for ME/CFS. In the current paper, they published findings of interviews they conducted with patients who underwent the intervention and found it 'useful and not harmful'.
Article | Thread
Clinical Leader
Identifying Digital Endpoints For Fatigue To Drive Better Clinical Care And Treatments - Michele Veldsman
This article provides more background on: IDEA-FAST, a consortium of 46 partners spanning 15 countries that aims to develop digital biomarkers for fatigue and sleep disturbances and track their relationship to activities of daily living and health-related quality of life.
Article | Thread
Fatigue, Biomedicine Health and Behavior
An international survey of experiences and attitudes towards transcutaneous auricular vagus nerve stimulation for people with Myalgic Encephalomyelitis/chronic fatigue syndrome - Leslie et al.
The authors conducted an online survey on transcutaneous auricular vagus nerve stimulation for ME/CFS. 116 responses were received. 56% of respondents reported favourable effects.
Article | Thread
Long Covid research
JAMA Network Open
Gray Matter Thickness and Subcortical Nuclear Volume in Men After SARS-CoV-2 Omicron Infection — Yanyao Du et al.
“In this cohort study of 61 male patients with Omicron infection, the gray matter thickness in the left precuneus and right lateral occipital region and the ratio of the right hippocampus volume to the total intracranial volume were significantly reduced in the acute phase. Gray matter thickness and subcortical nuclear volume injury were significantly associated with anxiety and cognitive function.”
Article | Thread
The Journal of Nervous and Mental Disease
Drawing the Line Between Postacute Sequelae of COVID-19 and Functional Neurologic Disorders. A Daunting Clinical Overlap or Irrelevant Conundrum? - Sales et al.
"This review summarizes the literature on the overlapping nature and discrimination of PASC from FND in COVID-19 survivors."
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 4th December 2023
News, advocacy and media
Trial by Error by David Tuller Dutch Survey respondents Rate GET/CBT as "the Worst" Approach, Per New Report
Graded exercise therapy was rated as the worst intervention in a Dutch survey with more than 1500 ME/CFS participants. The survey is part of the development of new treatment guidelines and Tuller writes about the expected backlash from professionals with vested interests in such approaches.
Article l Thread
USA CDC National Center for Health Statistics
A National Health Interview survey conducted in 2021-2022 found that 1.3% of adults in the USA had ME/CFS. Women (1.7%) were more likely than men (0.9%) to have ME/CFS. Adults in families with lower income also had higher rates of ME/CFS.
Report | Thread
UK ME Association AGM 11th December. The Chairman's report includes changes to staff and trustees, and aspects of their work helping people with ME through ME Connect, advocacy particularly related to implemention of the NICE guideline, and funding research.
Article | Thread
Sweden The public broadcaster SVT has done three articles about undocumented ME treatment at the private Amelie clinic. The treatments include the antiviral drug Valganciclovir and the HIV drug Ritonavir. Some patients have reported the clinic which has led to a lot of debate within the patient community. The immunologist Jonas Axelsson is the clinic's doctor and says his approach is evidence based practice. Dr. Axelsson had initiated a clinical trial on Valganciclovir, but the project has been stopped.
Articles 1 2 3 4 l Thread
Sweden Journalist Agnis Arpi has written a text for the feminist magazine Hertha about lack of resources directed towards women's health and mentions ME as one example.
Article l Thread
Aotearoa New Zealand RNZ Saturday
Sean O'Neill discusses his daughter Maeve, who died at the age of 27 in 2021 from malnutrition in the context of very severe ME/CFS. An official inquest into her care under the UK NHS is in process. Further comments by Otago's Emeritus Prof Warren Tate.
Link | Thread
Germany The newspaper Frankfurter Allgemeine with article about ME sufferer Jonas.
Article l Thread
..........
Coming events
Bateman Horne Center - Lunch and Learn
Topic: My Favorite Things
Thursday, December 14, 11:30 AM - 1:30 PM Mountain Time
(see thread for time in your time zone)
Announcement | Thread
#MEAction - Partner Caregiver Support Call
Sunday, December 16
3:00 - 4:00 PM Eastern time
Zoom call for partner caregivers of people with ME or Long COVID.
(see thread for time in your time zone)
Announcement | Thread
Finland Webinar 24.01.2024 on Long Covid, ME/CFS and hyper mobility. Organised by Suomen Psykofyysisen Fysioterapian Yhdistys.
More information l Thread
.........
Research news
UK DecodeME Coming soon – DecodeME’s Second Questionnaire
Everyone who submitted the first questionnaire will be invited to complete a second questionnaire. "This second questionnaire is designed to complement the first by delving deeper into your experience of ME/CFS."
Article | Thread
"If you have been invited to the DNA stage, and have yet to return your spit kit, please do so by the 31 January 2024. The more samples we have the better the science will be!"
Website | Thread
Workwell Foundation Workwell Teams up with STAT Health
Blog post about an in-ear wearable device that tracks blood flow to the head. "Workwell and STAT Health hope to understand whether blood flow to the head is reduced during PEM and if this index helps explain the worsened orthostatic symptoms that many report."
Blog | Thread
NL Times Netherlands to lead major study to test existing medications for long Covid treatment
"Preparations are underway in the Netherlands for an extensive European study aimed at determining whether existing, readily available, and affordable medications can alleviate symptoms in long Covid patients, NOS reported on Friday."
Article | Thread
Academic Medical Education
The recording of the 'Demystifying Long COVID International Conference 2023' has been put online on Youtube.
Day 1 | Day 2 | Day 3 | Thread
...........
Research
ME/CFS research
International Journal of Molecular Sciences
Investigating the Human Intestinal DNA Virome and Predicting Disease-Associated Virus–Host Interactions in Severe ME/CFS - Hsieh, Carding et al.
"Using an in silico approach, we predicted interactions between members of the Anaerotruncus genus and unique viruses present in ME/CFS microbiomes."
Article | Thread
Preprint
Immunological Patient Stratification in ME/CFS - Rohrhofer et al
An attempt to stratify people with ME/CFS into two groups based on their immune competence and to relate this to "inflammatory immune mediators and biomarkers for intestinal barrier integrity".
Preprint | Thread
Frontiers in Physiology
Post-exertional malaise in daily life and experimental exercise models in patients with [ME/CFS] - Vollestad & Mengshoel
This review argues that "there are indications of altered muscular metabolism and autonomic nervous responses if exercise is repeated on successive days in patients with ME/CFS."
Article | Thread
MMW - Fortschritte der Medizin
Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patient perspective - Horstmeier & Horstmeier
This article in German summarises the findings of a survey on 544 ME/CFS patients. Participants reported a significant deterioration in their health as a result of misdiagnoses, incorrect treatments, and the lack of support from the physicians.
Article | Thread
Long Covid research
Preprint: BioRxiv
Dysregulated Platelet Function in Patients with Post-Acute Sequelae of COVID-19 — Anu Aggarwal et al.
“The most significant finding in our study is that platelet-deplete plasma in PASC patients ‘primes’ and markedly activates healthy, washed platelets through every receptor signaling pathway evaluated.” ”The hyper-reactive platelet effect caused by PASC plasma persisted even after heating plasma to 55°C suggesting the complement cascade or circulating antibodies are likely not responsible for augmented platelet activation.”
Article | Thread
Clinical Nutrition ESPEN
Maximal oxidative capacity during exercise is associated with muscle power output in patients with long coronavirus disease 2019 (COVID-19) syndrome. A moderation analysis — Robinson Ramírez-Vélez et al.
“In summary, we have provided a preliminary report of lower [maximal fatty acid oxidation] during exercise in patients with LCS compared with healthy controls, potentially indicating mitochondrial dysfunction.”
Article | Thread
Journal of Proteome Research
Proteomic Evolution from Acute to Post-COVID-19 Conditions — Yassene Mohammed et al.
“Proteins associated with six key lipid-related pathways increased from admission to 3 and 6 months; conversely, proteins related to innate immune responses and vasoconstriction-related proteins decreased.”
Article | Thread
Preprint: MedRxiv
Long COVID is associated with severe cognitive slowing — Sijia Zhao et al.
“We identified pronounced cognitive slowing in PCC patients, which distinguished them from age-matched healthy individuals who previously had symptomatic COVID-19 but did not manifest PCC.”
Article | Thread
International Journal of Epidemiology
Prevalence and determinants of post-acute sequelae of COVID-19 in Liberia — Gwaikolo et al.
“Our findings suggest that the long-term health impact of COVID-19 in people infected during this period of the pandemic in [sub-Saharan Africa] could be more significant than previously recognized.”
Article | Thread
Nature Scientific Reports
Incidence and burden of long COVID in Africa: a systematic review and meta-analysis — Frallonardo et al.
“In this study, fatigue was the most common symptom (35.4%, 95%CI 25.6–45.2) which represents the most debilitating long COVID symptom, and the first reason patients seek for medical assistance. This is concerning because, in Africa, it has the potential to lead to important impairment in productivity and further loss of economic agency.”
Article | Thread
Nature Reviews Neuroscience
The neurobiology of SARS-CoV-2 infection — Meinhardt et al.
“In this Review, we put special emphasis on discussing the methodological difficulties of viral detection in CNS tissue and discuss immune-based (systemic and central) effects contributing to COVID-19-related CNS affection.”
Article | Thread
The Lancet Infectious Diseases
A synbiotic preparation (SIM01) for post-acute COVID-19 syndrome in Hong Kong (RECOVERY): a randomised, double-blind, placebo-controlled trial — Raphaela I Lau et al.
“We identified favourable changes in the gut microbiome, including increased bacterial diversity and short-chain acid-producing bacteria and decreased resistome in the SIM01 group but not placebo group after 6 months of treatment” “The present study did not identify a significant difference in quality of life and physical activity between the two groups at 6 months.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
Trial by Error by David Tuller Dutch Survey respondents Rate GET/CBT as "the Worst" Approach, Per New Report
Graded exercise therapy was rated as the worst intervention in a Dutch survey with more than 1500 ME/CFS participants. The survey is part of the development of new treatment guidelines and Tuller writes about the expected backlash from professionals with vested interests in such approaches.
Article l Thread
USA CDC National Center for Health Statistics
A National Health Interview survey conducted in 2021-2022 found that 1.3% of adults in the USA had ME/CFS. Women (1.7%) were more likely than men (0.9%) to have ME/CFS. Adults in families with lower income also had higher rates of ME/CFS.
Report | Thread
UK ME Association AGM 11th December. The Chairman's report includes changes to staff and trustees, and aspects of their work helping people with ME through ME Connect, advocacy particularly related to implemention of the NICE guideline, and funding research.
Article | Thread
Sweden The public broadcaster SVT has done three articles about undocumented ME treatment at the private Amelie clinic. The treatments include the antiviral drug Valganciclovir and the HIV drug Ritonavir. Some patients have reported the clinic which has led to a lot of debate within the patient community. The immunologist Jonas Axelsson is the clinic's doctor and says his approach is evidence based practice. Dr. Axelsson had initiated a clinical trial on Valganciclovir, but the project has been stopped.
Articles 1 2 3 4 l Thread
Sweden Journalist Agnis Arpi has written a text for the feminist magazine Hertha about lack of resources directed towards women's health and mentions ME as one example.
Article l Thread
Aotearoa New Zealand RNZ Saturday
Sean O'Neill discusses his daughter Maeve, who died at the age of 27 in 2021 from malnutrition in the context of very severe ME/CFS. An official inquest into her care under the UK NHS is in process. Further comments by Otago's Emeritus Prof Warren Tate.
Link | Thread
Germany The newspaper Frankfurter Allgemeine with article about ME sufferer Jonas.
Article l Thread
..........
Coming events
Bateman Horne Center - Lunch and Learn
Topic: My Favorite Things
Thursday, December 14, 11:30 AM - 1:30 PM Mountain Time
(see thread for time in your time zone)
Announcement | Thread
#MEAction - Partner Caregiver Support Call
Sunday, December 16
3:00 - 4:00 PM Eastern time
Zoom call for partner caregivers of people with ME or Long COVID.
(see thread for time in your time zone)
Announcement | Thread
Finland Webinar 24.01.2024 on Long Covid, ME/CFS and hyper mobility. Organised by Suomen Psykofyysisen Fysioterapian Yhdistys.
More information l Thread
.........
Research news
UK DecodeME Coming soon – DecodeME’s Second Questionnaire
Everyone who submitted the first questionnaire will be invited to complete a second questionnaire. "This second questionnaire is designed to complement the first by delving deeper into your experience of ME/CFS."
Article | Thread
"If you have been invited to the DNA stage, and have yet to return your spit kit, please do so by the 31 January 2024. The more samples we have the better the science will be!"
Website | Thread
Workwell Foundation Workwell Teams up with STAT Health
Blog post about an in-ear wearable device that tracks blood flow to the head. "Workwell and STAT Health hope to understand whether blood flow to the head is reduced during PEM and if this index helps explain the worsened orthostatic symptoms that many report."
Blog | Thread
NL Times Netherlands to lead major study to test existing medications for long Covid treatment
"Preparations are underway in the Netherlands for an extensive European study aimed at determining whether existing, readily available, and affordable medications can alleviate symptoms in long Covid patients, NOS reported on Friday."
Article | Thread
Academic Medical Education
The recording of the 'Demystifying Long COVID International Conference 2023' has been put online on Youtube.
Day 1 | Day 2 | Day 3 | Thread
...........
Research
ME/CFS research
International Journal of Molecular Sciences
Investigating the Human Intestinal DNA Virome and Predicting Disease-Associated Virus–Host Interactions in Severe ME/CFS - Hsieh, Carding et al.
"Using an in silico approach, we predicted interactions between members of the Anaerotruncus genus and unique viruses present in ME/CFS microbiomes."
Article | Thread
Preprint
Immunological Patient Stratification in ME/CFS - Rohrhofer et al
An attempt to stratify people with ME/CFS into two groups based on their immune competence and to relate this to "inflammatory immune mediators and biomarkers for intestinal barrier integrity".
Preprint | Thread
Frontiers in Physiology
Post-exertional malaise in daily life and experimental exercise models in patients with [ME/CFS] - Vollestad & Mengshoel
This review argues that "there are indications of altered muscular metabolism and autonomic nervous responses if exercise is repeated on successive days in patients with ME/CFS."
Article | Thread
MMW - Fortschritte der Medizin
Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patient perspective - Horstmeier & Horstmeier
This article in German summarises the findings of a survey on 544 ME/CFS patients. Participants reported a significant deterioration in their health as a result of misdiagnoses, incorrect treatments, and the lack of support from the physicians.
Article | Thread
Long Covid research
Preprint: BioRxiv
Dysregulated Platelet Function in Patients with Post-Acute Sequelae of COVID-19 — Anu Aggarwal et al.
“The most significant finding in our study is that platelet-deplete plasma in PASC patients ‘primes’ and markedly activates healthy, washed platelets through every receptor signaling pathway evaluated.” ”The hyper-reactive platelet effect caused by PASC plasma persisted even after heating plasma to 55°C suggesting the complement cascade or circulating antibodies are likely not responsible for augmented platelet activation.”
Article | Thread
Clinical Nutrition ESPEN
Maximal oxidative capacity during exercise is associated with muscle power output in patients with long coronavirus disease 2019 (COVID-19) syndrome. A moderation analysis — Robinson Ramírez-Vélez et al.
“In summary, we have provided a preliminary report of lower [maximal fatty acid oxidation] during exercise in patients with LCS compared with healthy controls, potentially indicating mitochondrial dysfunction.”
Article | Thread
Journal of Proteome Research
Proteomic Evolution from Acute to Post-COVID-19 Conditions — Yassene Mohammed et al.
“Proteins associated with six key lipid-related pathways increased from admission to 3 and 6 months; conversely, proteins related to innate immune responses and vasoconstriction-related proteins decreased.”
Article | Thread
Preprint: MedRxiv
Long COVID is associated with severe cognitive slowing — Sijia Zhao et al.
“We identified pronounced cognitive slowing in PCC patients, which distinguished them from age-matched healthy individuals who previously had symptomatic COVID-19 but did not manifest PCC.”
Article | Thread
International Journal of Epidemiology
Prevalence and determinants of post-acute sequelae of COVID-19 in Liberia — Gwaikolo et al.
“Our findings suggest that the long-term health impact of COVID-19 in people infected during this period of the pandemic in [sub-Saharan Africa] could be more significant than previously recognized.”
Article | Thread
Nature Scientific Reports
Incidence and burden of long COVID in Africa: a systematic review and meta-analysis — Frallonardo et al.
“In this study, fatigue was the most common symptom (35.4%, 95%CI 25.6–45.2) which represents the most debilitating long COVID symptom, and the first reason patients seek for medical assistance. This is concerning because, in Africa, it has the potential to lead to important impairment in productivity and further loss of economic agency.”
Article | Thread
Nature Reviews Neuroscience
The neurobiology of SARS-CoV-2 infection — Meinhardt et al.
“In this Review, we put special emphasis on discussing the methodological difficulties of viral detection in CNS tissue and discuss immune-based (systemic and central) effects contributing to COVID-19-related CNS affection.”
Article | Thread
The Lancet Infectious Diseases
A synbiotic preparation (SIM01) for post-acute COVID-19 syndrome in Hong Kong (RECOVERY): a randomised, double-blind, placebo-controlled trial — Raphaela I Lau et al.
“We identified favourable changes in the gut microbiome, including increased bacterial diversity and short-chain acid-producing bacteria and decreased resistome in the SIM01 group but not placebo group after 6 months of treatment” “The present study did not identify a significant difference in quality of life and physical activity between the two groups at 6 months.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 11th December 2023
News, advocacy and media
#MEAction has announced plans for Millions Missing 2024, "a national campaign to educate hospital systems and medical schools about ME/CFS." The goal is to hold in person events at medical schools and hospitals during the week of May 3 - 12. Volunteers for these #TeachMETreatME events are needed.
Announcement | Thread
Sweden A local newspaper in Stockholm writes about a post Covid clinic at Karolinska which is extending their care to include ME/CFS patients as they overlap.
Article l Thread
A Life Hidden Reclaiming the Narrative: Finding the Real Me
A beautifully written and important article from Naomi Whittingham who has suffered from ME since the age of 13. She writes about having lived "under the shadow of other people's narrative" about her illness and that she's now reclaiming the narrative. "Buried beneath what I thought was failure, I have instead found a courage that astonishes the adult me. I’ve found a girl who endured the truly unendurable; who clung to life, even when it was the hardest thing she could have done."
Article l Thread
The New York Times 1,374 Days - My life with Long COVID
Georgia Lupi uses her skills as an information designer to describe her experience of having lived with Long Covid for over three years and the struggle of getting proper medical care. She has also been diagnosed with among other things ME.
Article l Thread
The New York Times Reporting on Long Covid Taught Me to Be a Better Journalist
Excellent guest essay by Pulitzer prize winning journalist Ed Yong on covering Long Covid and ME/CFS. "I am far from the only journalist covering this topic but clearly there aren’t enough of us. How could so many people feel so thoroughly unrepresented by an industry that purports to give voice to the voiceless?"
Article l Thread
..............
Research news
UK DecodeME The recent webinar is available on YouTube. Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke provide an update with information about a second questionnaire coming soon, accessiblity of the data for other researchers, and answers to questions about what the data might show.
A reminder to those with spit kits to return them by the end of January so your genetic data can contribute to the research.
Webinar (duration 1 hour) | Article with transcript | Thread
UK - The LOCOME project (LOng COvid and Myalgic Encephalomyelitis diagnostics and stratification) has been awarded a £622,000 grant by Innovate UK's Advancing Precision Medicine programme to improve diagnosis and treatment for the millions of people affected by ME/CFS and long Covid.
It will "extend PrecisionLife’s previous analyses to include deeper multimodal data for a wider group of patients from long Covid datasets and the world's largest study of ME/CFS, led by the DecodeME Partnership, which includes Action for M.E. and the MRC Human Genetics Unit."
Precision Life article | UK Bioindustry Association article | Thread
ME Research UK The impact of ME/CFS on visual sensory processing and selective attention
MERUK has awarded funding for a PhD student at Leicester University to work on this project.
Article | Thread
NIH In a recent meeting the NIH budget director announced that the RECOVER initiative has secured an additional $200 million for a second round of clinical trials for Long Covid treatments.
Thread
Germany
In 2024, a new ME/CFS research project will start at the Charite Hospital in Berlin, which is jointly funding by LostVoicesStiftung and the ME/CFS Research Foundation. The project will research biomarkers and disease mechanisms using an advanced blood analysis methods.
Article | Thread
...........
Research
ME/CFS research
Frontiers in Immunology
In vitro B cell experiments explore the role of CD24, CD38 and energy metabolism in ME/CFS - Armstrong et al
"Immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with increased usage of additional substrates to maintain necessary ATP levels. Disturbances in energy metabolism in ME/CFS B cells were thus confirmed in a dynamic in vitro model, providing the basis for further mechanistic investigations."
Article | Thread
Nature Scientific Reports
A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis - Peppercorn, Tate et al
"To investigate the pathophysiology of LC, a pilot study of patients (n = 6) and healthy controls (n = 5) has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins. ... There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions."
Article | Thread
Preprint
Augmentation of Anaerobic Pentose Phosphate Pathway Dysregulates Tetrahydrobiopterin Metabolism in ME/CFS Patients with Orthostatic Intolerance: A Pilot Study - Bulbule, Roy et al
The authors used a series of in vitro tests to study this biochemical pathway.
"Here, we report that the activation of the non-oxidative pentose phosphate pathway (PPP) plays a critical role in the biosynthesis of BH4 in ME + OI patients."
Preprint | Thread
Medicina
Worsening Symptoms Is Associated with Larger Cerebral Blood Flow Abnormalities during Tilt-Testing in [ME/CFS] - van Campen et al.
Using their database of previous patients whose severity level and cerebral perfusion during tilt testing was tested on two visits. The group whose health had worsened also showed worse cerebral perfusion. Those whose symptom severity stayed the same also had unchanged perfusion.
Article | Thread
Sociology of Health & Illness
Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in” - Nathalie Wotherspoon
This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME).
Article | Thread
International Journal of Clinical and Health Psychology
A taxonomy of threat and soothing influences in rheumatic and musculoskeletal diseases and central sensitivity syndromes - Hijne et al.
A large online survey was used to identify threat and soothing influences that may worsen or alleviate physical symptoms in people with rheumatic and musculoskeletal diseases and central sensitivity syndromes. The latter included chronic fatigue syndrome.
Article | Thread
Frontiers in Neuroscience
A cross-sectional study exploring the relationship between symptoms of anxiety/depression and P50 sensory gating in adult patients diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis - Liu et al.
This study analyzed anxiety/depression symptoms in patients with CFS and the association with the P50 SG (sensory gate) ratio, a neurophysiological measure that assesses the brain's ability to filter redundant sensory stimuli.
Article | Thread
Deutsche Medizinische Wochenschrift (DMW)
Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective - Habermann-Horstmeier & Horstmeier
This german article surveyed 544 patients on their experience being diagnosed with ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness and ignore patient knowledge and disregard scientific information provided.
Article | Thread
Preprint
Microvascular Capillary and Precapillary Cardiovascular Disturbances Strongly Interact to Severely Affect Tissue Perfusion and Mitochondrial Function in ME/CFS Evolving from the Post COVID-19 Syndrome - Wirth and Löhn
A hypothesis article describing a vicious cycle of circulatory disturbances leading to "a particular kind of perfusion disturbance - capillary ischemia-reperfusion - which has a high potential of causing mitochondrial dysfunction by inducing sodium- and calcium-overload in skeletal muscles."
Preprint | Thread
Long Covid research
Acta Neuropathologica Communications
Post-COVID exercise intolerance is associated with capillary alterations and immune dysregulations in skeletal muscles — Aschman et al.
“Compared to two independent historical control cohorts, patients with post‑COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169 + macrophages.” “We hypothesize that the initial viral infection may have caused immune‑mediated structural changes of the microvasculature, potentially explaining the exercise‑dependent fatigue and muscle pain.”
Article | Thread
Preprint: MedRxiv
Mechanisms underlying exercise intolerance in Long COVID: an accumulation of multi-system dysfunction — Alexandra Jamieson et al.
“Long COVID is associated with reduced measures of exercise performance and skeletal muscle oxidative capacity in the absence of evidence of microvascular dysfunction, suggesting mitochondrial pathology. There was evidence of attendant ANS dysregulation in a significant proportion.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
#MEAction has announced plans for Millions Missing 2024, "a national campaign to educate hospital systems and medical schools about ME/CFS." The goal is to hold in person events at medical schools and hospitals during the week of May 3 - 12. Volunteers for these #TeachMETreatME events are needed.
Announcement | Thread
Sweden A local newspaper in Stockholm writes about a post Covid clinic at Karolinska which is extending their care to include ME/CFS patients as they overlap.
Article l Thread
A Life Hidden Reclaiming the Narrative: Finding the Real Me
A beautifully written and important article from Naomi Whittingham who has suffered from ME since the age of 13. She writes about having lived "under the shadow of other people's narrative" about her illness and that she's now reclaiming the narrative. "Buried beneath what I thought was failure, I have instead found a courage that astonishes the adult me. I’ve found a girl who endured the truly unendurable; who clung to life, even when it was the hardest thing she could have done."
Article l Thread
The New York Times 1,374 Days - My life with Long COVID
Georgia Lupi uses her skills as an information designer to describe her experience of having lived with Long Covid for over three years and the struggle of getting proper medical care. She has also been diagnosed with among other things ME.
Article l Thread
The New York Times Reporting on Long Covid Taught Me to Be a Better Journalist
Excellent guest essay by Pulitzer prize winning journalist Ed Yong on covering Long Covid and ME/CFS. "I am far from the only journalist covering this topic but clearly there aren’t enough of us. How could so many people feel so thoroughly unrepresented by an industry that purports to give voice to the voiceless?"
Article l Thread
..............
Research news
UK DecodeME The recent webinar is available on YouTube. Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke provide an update with information about a second questionnaire coming soon, accessiblity of the data for other researchers, and answers to questions about what the data might show.
A reminder to those with spit kits to return them by the end of January so your genetic data can contribute to the research.
Webinar (duration 1 hour) | Article with transcript | Thread
UK - The LOCOME project (LOng COvid and Myalgic Encephalomyelitis diagnostics and stratification) has been awarded a £622,000 grant by Innovate UK's Advancing Precision Medicine programme to improve diagnosis and treatment for the millions of people affected by ME/CFS and long Covid.
It will "extend PrecisionLife’s previous analyses to include deeper multimodal data for a wider group of patients from long Covid datasets and the world's largest study of ME/CFS, led by the DecodeME Partnership, which includes Action for M.E. and the MRC Human Genetics Unit."
Precision Life article | UK Bioindustry Association article | Thread
ME Research UK The impact of ME/CFS on visual sensory processing and selective attention
MERUK has awarded funding for a PhD student at Leicester University to work on this project.
Article | Thread
NIH In a recent meeting the NIH budget director announced that the RECOVER initiative has secured an additional $200 million for a second round of clinical trials for Long Covid treatments.
Thread
Germany
In 2024, a new ME/CFS research project will start at the Charite Hospital in Berlin, which is jointly funding by LostVoicesStiftung and the ME/CFS Research Foundation. The project will research biomarkers and disease mechanisms using an advanced blood analysis methods.
Article | Thread
...........
Research
ME/CFS research
Frontiers in Immunology
In vitro B cell experiments explore the role of CD24, CD38 and energy metabolism in ME/CFS - Armstrong et al
"Immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with increased usage of additional substrates to maintain necessary ATP levels. Disturbances in energy metabolism in ME/CFS B cells were thus confirmed in a dynamic in vitro model, providing the basis for further mechanistic investigations."
Article | Thread
Nature Scientific Reports
A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis - Peppercorn, Tate et al
"To investigate the pathophysiology of LC, a pilot study of patients (n = 6) and healthy controls (n = 5) has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins. ... There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions."
Article | Thread
Preprint
Augmentation of Anaerobic Pentose Phosphate Pathway Dysregulates Tetrahydrobiopterin Metabolism in ME/CFS Patients with Orthostatic Intolerance: A Pilot Study - Bulbule, Roy et al
The authors used a series of in vitro tests to study this biochemical pathway.
"Here, we report that the activation of the non-oxidative pentose phosphate pathway (PPP) plays a critical role in the biosynthesis of BH4 in ME + OI patients."
Preprint | Thread
Medicina
Worsening Symptoms Is Associated with Larger Cerebral Blood Flow Abnormalities during Tilt-Testing in [ME/CFS] - van Campen et al.
Using their database of previous patients whose severity level and cerebral perfusion during tilt testing was tested on two visits. The group whose health had worsened also showed worse cerebral perfusion. Those whose symptom severity stayed the same also had unchanged perfusion.
Article | Thread
Sociology of Health & Illness
Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in” - Nathalie Wotherspoon
This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME).
Article | Thread
International Journal of Clinical and Health Psychology
A taxonomy of threat and soothing influences in rheumatic and musculoskeletal diseases and central sensitivity syndromes - Hijne et al.
A large online survey was used to identify threat and soothing influences that may worsen or alleviate physical symptoms in people with rheumatic and musculoskeletal diseases and central sensitivity syndromes. The latter included chronic fatigue syndrome.
Article | Thread
Frontiers in Neuroscience
A cross-sectional study exploring the relationship between symptoms of anxiety/depression and P50 sensory gating in adult patients diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis - Liu et al.
This study analyzed anxiety/depression symptoms in patients with CFS and the association with the P50 SG (sensory gate) ratio, a neurophysiological measure that assesses the brain's ability to filter redundant sensory stimuli.
Article | Thread
Deutsche Medizinische Wochenschrift (DMW)
Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective - Habermann-Horstmeier & Horstmeier
This german article surveyed 544 patients on their experience being diagnosed with ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness and ignore patient knowledge and disregard scientific information provided.
Article | Thread
Preprint
Microvascular Capillary and Precapillary Cardiovascular Disturbances Strongly Interact to Severely Affect Tissue Perfusion and Mitochondrial Function in ME/CFS Evolving from the Post COVID-19 Syndrome - Wirth and Löhn
A hypothesis article describing a vicious cycle of circulatory disturbances leading to "a particular kind of perfusion disturbance - capillary ischemia-reperfusion - which has a high potential of causing mitochondrial dysfunction by inducing sodium- and calcium-overload in skeletal muscles."
Preprint | Thread
Long Covid research
Acta Neuropathologica Communications
Post-COVID exercise intolerance is associated with capillary alterations and immune dysregulations in skeletal muscles — Aschman et al.
“Compared to two independent historical control cohorts, patients with post‑COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169 + macrophages.” “We hypothesize that the initial viral infection may have caused immune‑mediated structural changes of the microvasculature, potentially explaining the exercise‑dependent fatigue and muscle pain.”
Article | Thread
Preprint: MedRxiv
Mechanisms underlying exercise intolerance in Long COVID: an accumulation of multi-system dysfunction — Alexandra Jamieson et al.
“Long COVID is associated with reduced measures of exercise performance and skeletal muscle oxidative capacity in the absence of evidence of microvascular dysfunction, suggesting mitochondrial pathology. There was evidence of attendant ANS dysregulation in a significant proportion.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 18th December 2023
Part 1 of 2
Seasonal good wishes to all our readers
News, advocacy and media
Patient Led Research Collaborative Open letter sent to President Biden
An open letter signed by clinicians, researchers, research organizations, journalists, patient groups, and many more was sent to President Biden. The letter urges him to "address the crisis of Long COVID and other infection-associated chronic conditions" in the fiscal year budget for 2025.
Announcement | Letter | Thread
Bateman Horne Center Long COVID & Post-Viral Syndromes ECHO: When Exercise Doesn't Help
Hour long video where occupational therapist, Amy Mooney, MS, OTR/L, and physical therapist, Clayton Powers, DPT "address the importance of screening for PEM and redefine 'exercise' in patients with PEM/PESE."
Video | Thread
Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
The 18th December update to the petition reports that to date there is no reply to our letter sent a month ago to Cochrane's head of governance. "We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints."
The letter requesting withdawal is now supported by 69 organisations and the petition by over 9700 signatories. The S4ME committee intend to formally present the petition to Cochrane soon and is considering further action.
Petition | Petition update | Letter thread | Petition thread
Letter from Cochrane On 19th December the S4ME committee received a response to our letter of a month earlier in which we assumed on the basis of previous correspondence that our complaints were not being considered. In this letter, Jordi Pardo Pardo, Interim Chair. Cochrane Governing Board clarifies the position. He says that some of the points we have raised had been considered already after complaints in 2020. And concludes his letter:
"However, the other matters you have raised are under review, and we will get back to you in due course."
Thread with letter
Cochrane IAG The 20th December 2023 report from the Independent Advisory Group for the planned new review is now available online.
The IAG expects to hold a consultation on its paper on past critiques of the review early in the new year, and to report on a new editorial structure soon.
On complaints, Hilda Bastian reports: "We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future."
On IAG membership: "There is one final vacant position on the IAG. A primary consideration in filling this position will be addressing concerns expressed about a perception of bias in the makeup of the IAG." This is expected to be filled by "a medical practitioner working with patients with ME/CFS." Nominations to be sent to Hilda by the end of January.
Cochrane IAG Update | Thread
Harvard Health Publishing Chronic fatigue syndrome is rising
A short article on ME/CFS, mentioning that CDC newly estimated that "3.3 million Americans - including many with long COVID - may have this tricky-to-diagnose condition". Also includes a video with Lili, where she shares her story of becoming ill and living with ME/CFS.
Article l Thread
BMJ Opinion
Long covid: where are we, what does it say about our pandemic response, and where next? - Altmann and Pagel
The authors take a look at UK Long Covid prevalence data, including large numbers unable to work. They state LC is a physiological condition, probably with subgroups with different biochemical pathways, and make the case for more research funding and clinical trials. They criticise the absence of LC from SAGE modelling during the pandemic, and importance of highlighting this in the current Covid Inquiry in advice for future pandemics.
Article | Thread
BMJ Rapid response
Mark Vink, MD has written a rapid response to the above article.
Vink refers to similarities between ME/CFS and Long Covid and comments: "What a shame that the medical profession has been psychologising post infectious diseases like ME/CFS for decades. If we had taken them seriously as we should have, then by now we would have had many different effective pharmacological treatments for Long Covid and the article by Altmann et al. would not have been necessary."
Rapid response
Harvard Business manager There Is Money in Prevention
Thorough article by Managing Editor of Harvard Business manager Britta Domke who has been studying the pandemic's impact on the economy. "Leaders face a choice: Do they want to keep watching the "mass disabling event" in the working population and just accept the shortage of skilled workers? Or will they take action and protect their workforce from new infections.."
Article l Thread
KTSP News No treatment, no cure: Patients await answers about debilitating disease related to long COVID
This report, from KTSP in Saint Paul, Minnesota, includes comments from two ME/CFS patients: one who got an ME/CFS diagnosis after a COVID infection and another who was diagnosed before the pandemic. The program manager of the long COVID program at the Minnesota Department of Health says that doctors don't have the tools necessary to diagnose and treat long COVID.
Article | Thread
Medical News Bulletin The ME/CFS Myth
Article from December 15th addressing the myths that ME/CFS is psychogenic and treatable with exercise.
Article l Thread
UK BBC Radio Devon and BBC news article
Daughter's death 'could have been avoided'
"The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition. Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."
Article | Thread
__________________
In memory
Beth Mazur
#MEAction shared the sad news that Beth Mazur, one of the co-founders of #MEAction, has passed away.
"It is with deep sadness that we share with you that we lost one of our heroes and dedicated champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause."
Article | Thread (members only)
__________________
For research news and research go to the next post.
Part 1 of 2
Seasonal good wishes to all our readers News, advocacy and media
Patient Led Research Collaborative Open letter sent to President Biden
An open letter signed by clinicians, researchers, research organizations, journalists, patient groups, and many more was sent to President Biden. The letter urges him to "address the crisis of Long COVID and other infection-associated chronic conditions" in the fiscal year budget for 2025.
Announcement | Letter | Thread
Bateman Horne Center Long COVID & Post-Viral Syndromes ECHO: When Exercise Doesn't Help
Hour long video where occupational therapist, Amy Mooney, MS, OTR/L, and physical therapist, Clayton Powers, DPT "address the importance of screening for PEM and redefine 'exercise' in patients with PEM/PESE."
Video | Thread
Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
The 18th December update to the petition reports that to date there is no reply to our letter sent a month ago to Cochrane's head of governance. "We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints."
The letter requesting withdawal is now supported by 69 organisations and the petition by over 9700 signatories. The S4ME committee intend to formally present the petition to Cochrane soon and is considering further action.
Petition | Petition update | Letter thread | Petition thread
Letter from Cochrane On 19th December the S4ME committee received a response to our letter of a month earlier in which we assumed on the basis of previous correspondence that our complaints were not being considered. In this letter, Jordi Pardo Pardo, Interim Chair. Cochrane Governing Board clarifies the position. He says that some of the points we have raised had been considered already after complaints in 2020. And concludes his letter:
"However, the other matters you have raised are under review, and we will get back to you in due course."
Thread with letter
Cochrane IAG The 20th December 2023 report from the Independent Advisory Group for the planned new review is now available online.
The IAG expects to hold a consultation on its paper on past critiques of the review early in the new year, and to report on a new editorial structure soon.
On complaints, Hilda Bastian reports: "We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future."
On IAG membership: "There is one final vacant position on the IAG. A primary consideration in filling this position will be addressing concerns expressed about a perception of bias in the makeup of the IAG." This is expected to be filled by "a medical practitioner working with patients with ME/CFS." Nominations to be sent to Hilda by the end of January.
Cochrane IAG Update | Thread
Harvard Health Publishing Chronic fatigue syndrome is rising
A short article on ME/CFS, mentioning that CDC newly estimated that "3.3 million Americans - including many with long COVID - may have this tricky-to-diagnose condition". Also includes a video with Lili, where she shares her story of becoming ill and living with ME/CFS.
Article l Thread
BMJ Opinion
Long covid: where are we, what does it say about our pandemic response, and where next? - Altmann and Pagel
The authors take a look at UK Long Covid prevalence data, including large numbers unable to work. They state LC is a physiological condition, probably with subgroups with different biochemical pathways, and make the case for more research funding and clinical trials. They criticise the absence of LC from SAGE modelling during the pandemic, and importance of highlighting this in the current Covid Inquiry in advice for future pandemics.
Article | Thread
BMJ Rapid response
Mark Vink, MD has written a rapid response to the above article.
Vink refers to similarities between ME/CFS and Long Covid and comments: "What a shame that the medical profession has been psychologising post infectious diseases like ME/CFS for decades. If we had taken them seriously as we should have, then by now we would have had many different effective pharmacological treatments for Long Covid and the article by Altmann et al. would not have been necessary."
Rapid response
Harvard Business manager There Is Money in Prevention
Thorough article by Managing Editor of Harvard Business manager Britta Domke who has been studying the pandemic's impact on the economy. "Leaders face a choice: Do they want to keep watching the "mass disabling event" in the working population and just accept the shortage of skilled workers? Or will they take action and protect their workforce from new infections.."
Article l Thread
KTSP News No treatment, no cure: Patients await answers about debilitating disease related to long COVID
This report, from KTSP in Saint Paul, Minnesota, includes comments from two ME/CFS patients: one who got an ME/CFS diagnosis after a COVID infection and another who was diagnosed before the pandemic. The program manager of the long COVID program at the Minnesota Department of Health says that doctors don't have the tools necessary to diagnose and treat long COVID.
Article | Thread
Medical News Bulletin The ME/CFS Myth
Article from December 15th addressing the myths that ME/CFS is psychogenic and treatable with exercise.
Article l Thread
UK BBC Radio Devon and BBC news article
Daughter's death 'could have been avoided'
"The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition. Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."
Article | Thread
__________________
In memory
Beth Mazur
#MEAction shared the sad news that Beth Mazur, one of the co-founders of #MEAction, has passed away.
"It is with deep sadness that we share with you that we lost one of our heroes and dedicated champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause."
Article | Thread (members only)
__________________
For research news and research go to the next post.
Week beginning 18th December 2023
Part 2 of 2
Research news
UK Invest in ME Research LunaNova Fellowship
Applications are invited for a Postdoctoral Research Fellowship to join Prof Simon Carding at Quadram Institute Bioscience (QIB), based in Norwich, UK.
"The successful candidate will contribute to the groups' studies on the aetiology of ME/CFS and in particular the role that gastrointestinal tract-derived microbes and endogenous viruses play in disease pathophysiology."
Closing date for applications 2nd February 2024.
Details | Thread
UK DecodeME
"Our focus now is on getting as many spit kits back as possible.
If you are yet to return your kit, please do so by the 31 January 2024 at the latest. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."
Thread
USA - NIH Recordings from two webinars in the #MECFS Research Roadmap series, Chronic Infections (November 30) and Physiology (December 8) are now available. Transcripts for both videos are still to come.
Website | Thread
Medscape New Research Aims to Unravel Both ME/CFS and Long Covid
Miriam Tucker reports from the conference "Advancing ME/CFS Research: Identifying Targets for Potential Intervention and Learning from Long COVID" which recently took place at the US National Institutes of Health (NIH).
Article l Thread
David M Tuller Conversation with #MEAction's Jamie Seltzer about last week's NIH gathering
"Last Tuesday and Wednesday (December 12th and 13th), the US National Institutes of Health--and, specifically, the National Institute of Allergy and Infectious Diseases--held a two-day meeting called "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID." In 2019, I'd physically attended a similar NIH gathering in person; this time, I caught many of the presentations online instead. Jaime Seltzer, MEAction's scientific director, was there in person. In an interview last Friday, she shared some of her impressions of the event."
Interview l Thread
Medical News Bulletin Ask the expert: the ME/CFS Mystery.
"Dr Paul Hwang explains a little more about his PNAS paper 'WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in [ME/CFS]"
Article | Thread
2023: looking back on a year of ME/CFS research
Forum member ME/CFS skeptic has written a review of the most interesting ME/CFS studies in 2023.
Article | Thread
Netherlands
The Dutch research funding agency ZonMW has announced funding for 4 Long Covid projects.
Article | Thread
.............
Research
ME/CFS research
Preprint
Association of circulating biomarkers with illness severity measures differentiates ME/CFS and post-COVID-19 condition: a prospective cohort study - Domingo et al.
31 ME/CFS, 23 long COVID, and 31 matched healthy subjects were included.
"Principal component analysis supported differentiation between groups on self-reported outcome measures and endothelial and inflammatory biomarkers."
Preprint | Thread
The American Journal of Medicine
Post-Traumatic Stress Disorder and Complex Post-Traumatic Stress Disorder in people with long COVID, ME/CFS, and controls - Sanal-Hayes
The authors found that Post-Traumatic Stress Disorder (PTSD) and Complex Post-Traumatic Stress Disorder (CPTSD) were more common in Long Covid compared to ME/CFS patients.
Article | Thread
Health Psychology
Effectiveness of an Online Multicomponent Program (FATIGUEWALK) for Chronic Fatigue Syndrome: A Randomized Controlled Trial - Serrat et al.
This randomized trial evaluated an online multicomponent intervention called FATIGUEWALK that included pain neuroscience education, therapeutic exercise, cognitive restructuring, and mindfulness training.
Article | Thread
Long Covid research
ERJ Open Research
Differential Cardiopulmonary Hemodynamic Phenotypes in PASC Related Exercise Intolerance — Peter A. Kahn et al.
“our study suggests that a large portion of patients with PASC associated exertional intolerance exhibit impaired [peripheral oxygen extraction]”
Article | Thread
CHEST Pulmonary
Invasive Cardiopulmonary Exercise Testing Identifies Distinct Physiologic Endotypes in Postacute Sequelae of SARS-CoV-2 Infection — Michael G. Risbano et al.
“Our study uniquely describes the overlap of decreased [oxygen extraction] with [chronic thromboembolic pulmonary disease] and preload insufficiency.”
Article | Thread
Open Forum Infectious Diseases
Decreased Self-reported Physical Fitness Following SARS-CoV-2 Infection and the Impact of Vaccine Boosters in a Cohort Study — Richard et al.
“A substantial proportion of US service members in this cohort reported that their service-mandated FT scores were affected after COVID-19; this proportion was significantly higher than in those without a known history of SARS-CoV-2 infection.”
Article | Thread
Nature Communications
Para-infectious brain injury in COVID-19 persists at follow-up despite attenuated cytokine and autoantibody responses — Michael et al.
“neurological complications of COVID-19 are associated with evidence of neuroglial injury in both acute and late disease and these correlate with dysregulated innate and adaptive immune responses acutely.”
Article | Thread
International Journal of Infectious Diseases
Long COVID patients continue to experience significant symptoms at 12 months and factors associated with improvement: a prospective cohort study in France (PERSICOR) — Salmon et al.
“The cumulative percentages of complete remission at 12 months were 8.7%(95%CI:5.4%-13.1%). A significant improvement (score at 8-9) was reported by 28.6% while 62.7% reported minor or no significant improvement in symptoms (score < 8). No significant difference in significant improvement was observed when comparing individuals who received or did not receive the vaccine.”
Article | Thread
Preprint: MedRxiv
Prevalence of orthostatic intolerance in Long Covid clinic patients: A multicentre observational study — Cassie Lee et al.
“More than half of long covid patients experienced OI symptoms during [Nasa Lean Test] and more than one in ten patients met the criteria for either PoTS or OH, half of whom did not report previous typical OI symptoms.”
Article | Thread
European Respiratory Review
Balancing the value and risk of exercise-based therapy post-COVID-19: a narrative review — Sally J. Singh et al.
“some precautions may be necessary prior to embarking on an exercise programme. Areas of concern include ongoing complex lung pathologies, such as fibrosis, cardiovascular abnormalities and fatigue, and concerns regarding post-exertional symptom exacerbation.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
Research news
UK Invest in ME Research LunaNova Fellowship
Applications are invited for a Postdoctoral Research Fellowship to join Prof Simon Carding at Quadram Institute Bioscience (QIB), based in Norwich, UK.
"The successful candidate will contribute to the groups' studies on the aetiology of ME/CFS and in particular the role that gastrointestinal tract-derived microbes and endogenous viruses play in disease pathophysiology."
Closing date for applications 2nd February 2024.
Details | Thread
UK DecodeME
"Our focus now is on getting as many spit kits back as possible.
If you are yet to return your kit, please do so by the 31 January 2024 at the latest. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."
Thread
USA - NIH Recordings from two webinars in the #MECFS Research Roadmap series, Chronic Infections (November 30) and Physiology (December 8) are now available. Transcripts for both videos are still to come.
Website | Thread
Medscape New Research Aims to Unravel Both ME/CFS and Long Covid
Miriam Tucker reports from the conference "Advancing ME/CFS Research: Identifying Targets for Potential Intervention and Learning from Long COVID" which recently took place at the US National Institutes of Health (NIH).
Article l Thread
David M Tuller Conversation with #MEAction's Jamie Seltzer about last week's NIH gathering
"Last Tuesday and Wednesday (December 12th and 13th), the US National Institutes of Health--and, specifically, the National Institute of Allergy and Infectious Diseases--held a two-day meeting called "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID." In 2019, I'd physically attended a similar NIH gathering in person; this time, I caught many of the presentations online instead. Jaime Seltzer, MEAction's scientific director, was there in person. In an interview last Friday, she shared some of her impressions of the event."
Interview l Thread
Medical News Bulletin Ask the expert: the ME/CFS Mystery.
"Dr Paul Hwang explains a little more about his PNAS paper 'WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in [ME/CFS]"
Article | Thread
2023: looking back on a year of ME/CFS research
Forum member ME/CFS skeptic has written a review of the most interesting ME/CFS studies in 2023.
Article | Thread
Netherlands
The Dutch research funding agency ZonMW has announced funding for 4 Long Covid projects.
Article | Thread
.............
Research
ME/CFS research
Preprint
Association of circulating biomarkers with illness severity measures differentiates ME/CFS and post-COVID-19 condition: a prospective cohort study - Domingo et al.
31 ME/CFS, 23 long COVID, and 31 matched healthy subjects were included.
"Principal component analysis supported differentiation between groups on self-reported outcome measures and endothelial and inflammatory biomarkers."
Preprint | Thread
The American Journal of Medicine
Post-Traumatic Stress Disorder and Complex Post-Traumatic Stress Disorder in people with long COVID, ME/CFS, and controls - Sanal-Hayes
The authors found that Post-Traumatic Stress Disorder (PTSD) and Complex Post-Traumatic Stress Disorder (CPTSD) were more common in Long Covid compared to ME/CFS patients.
Article | Thread
Health Psychology
Effectiveness of an Online Multicomponent Program (FATIGUEWALK) for Chronic Fatigue Syndrome: A Randomized Controlled Trial - Serrat et al.
This randomized trial evaluated an online multicomponent intervention called FATIGUEWALK that included pain neuroscience education, therapeutic exercise, cognitive restructuring, and mindfulness training.
Article | Thread
Long Covid research
ERJ Open Research
Differential Cardiopulmonary Hemodynamic Phenotypes in PASC Related Exercise Intolerance — Peter A. Kahn et al.
“our study suggests that a large portion of patients with PASC associated exertional intolerance exhibit impaired [peripheral oxygen extraction]”
Article | Thread
CHEST Pulmonary
Invasive Cardiopulmonary Exercise Testing Identifies Distinct Physiologic Endotypes in Postacute Sequelae of SARS-CoV-2 Infection — Michael G. Risbano et al.
“Our study uniquely describes the overlap of decreased [oxygen extraction] with [chronic thromboembolic pulmonary disease] and preload insufficiency.”
Article | Thread
Open Forum Infectious Diseases
Decreased Self-reported Physical Fitness Following SARS-CoV-2 Infection and the Impact of Vaccine Boosters in a Cohort Study — Richard et al.
“A substantial proportion of US service members in this cohort reported that their service-mandated FT scores were affected after COVID-19; this proportion was significantly higher than in those without a known history of SARS-CoV-2 infection.”
Article | Thread
Nature Communications
Para-infectious brain injury in COVID-19 persists at follow-up despite attenuated cytokine and autoantibody responses — Michael et al.
“neurological complications of COVID-19 are associated with evidence of neuroglial injury in both acute and late disease and these correlate with dysregulated innate and adaptive immune responses acutely.”
Article | Thread
International Journal of Infectious Diseases
Long COVID patients continue to experience significant symptoms at 12 months and factors associated with improvement: a prospective cohort study in France (PERSICOR) — Salmon et al.
“The cumulative percentages of complete remission at 12 months were 8.7%(95%CI:5.4%-13.1%). A significant improvement (score at 8-9) was reported by 28.6% while 62.7% reported minor or no significant improvement in symptoms (score < 8). No significant difference in significant improvement was observed when comparing individuals who received or did not receive the vaccine.”
Article | Thread
Preprint: MedRxiv
Prevalence of orthostatic intolerance in Long Covid clinic patients: A multicentre observational study — Cassie Lee et al.
“More than half of long covid patients experienced OI symptoms during [Nasa Lean Test] and more than one in ten patients met the criteria for either PoTS or OH, half of whom did not report previous typical OI symptoms.”
Article | Thread
European Respiratory Review
Balancing the value and risk of exercise-based therapy post-COVID-19: a narrative review — Sally J. Singh et al.
“some precautions may be necessary prior to embarking on an exercise programme. Areas of concern include ongoing complex lung pathologies, such as fibrosis, cardiovascular abnormalities and fatigue, and concerns regarding post-exertional symptom exacerbation.”
Article | Thread
............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 25th December 2023
News, advocacy and media
UK Yahoo News Council responds to billboard criticism from long Covid campaigners
"The Medical Research Council has reacted to criticism by long Covid campaigners who put up a large billboard near its Swindon office." Responding to the awareness raising campaign and call for more research funding the MRC lists its funding for LC and ME/CFS research.
Article | Thread
The Sick Times Long Covid advocates send "unhappy holiday" cards to their representatives
About a campaign organised by the Long Covid Moonshot demanding more funding and help for infection-associated chronic illnesses.
Article l Thread
ABC News Long COVID will take your health, your wealth - then it will come for your marriage
Article about how illnesses such as Long Covid and ME not only affect the patients, but also their partners, family and society overall. David Putrino is among those interviewed and says he wishes people understood the social impact of long COVID: "I'm talking about the workforce being diminished, the fact that people can't think the way they used to think - we're losing intellectual capital, we're losing physical capital, we're losing social capital".
Article l Thread
Denmark The Danish newspaper B.T. shared the story of severe ME sufferer who hasn't been able to take a shower since April and is missing out on her life. It also mentions how the Danish classification of ME as a functional disorder is harmful for the patients.
Article l Thread
Finland Article about 32 year old Niko who suffers from severe ME and despite being bed bound has been declared fit for work.
Article l Thread
Norway ME sufferer and specialist in psychology Frøydis Lilledalen has given a talk on YouTube titled "With hope for 2024" as a Christmas greeting for ME patients.
Talk l Thread
Compilation 2023 Forum member Kalliope has made a compilation of media articles about ME throughout the year based on the forum's weekly news briefs. There's been an upward trend over the last five years starting in 2019 with 10 ME articles to this year with 128 articles.
Thread
..................
Coming Events
USA - NIH Next two ME/CFS Research Roadmap webinars
Topic: Less Studied Pathologies
Friday, January 5, 11 AM Pacific / 8 AM Eastern
Topic: Circulation
Thursday, January 11, 11 AM Pacific / 8 AM Eastern
Webinars will be recorded and posted online, with a transcript, after the event.
Agendas | Registration | Thread
In memory of Beth Mazur
A memorial service will be held on January 13 at 1 PM Pacific Time in San Francisco. "Anyone who feels that their life was touched by hers in any way is invited. We will also stream it." ME/CFS and Long Covid patients and allies are welcome. Add your name to the evite to get more details.
Evite | Thread (members only)
...................
Research news
UK DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."
Thread
WE and ME Foundation
The WE and ME foundation has announced the recipients of the 2023 Johadamis ME/CFS € 100.000 Research Grant for the project "UNRAVELING ME/CFS": The Role of Hidden Viral Infections in Peripheral Blood and Gut-Specific Lymphatic Tissue in the Pathogenesis of ME/CFS. The project is led by Dr. Max Augustin and Prof. Dr. Alexander Zoulafy from Clinic Favoriten Vienna.
Article | Thread
USA - NIH Recordings have been posted for both days of the Dec. 12-13 webinar, Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from Long COVID. Closed captions available.
Day 1 | Day 2 | Thread
UK ME/CFS research Forum member Andy has started a thread gathering information on current studies of ME/CFS, or that include ME/CFS in their description, funded by UK charities and government funders.
Thread
...............
Research
Biomedical ME/CFS and Long Covid research
Brain, Behaviour and Immunity - Health
Identification of CD8 T-cell dysfunction associated with symptoms in ME/CFS and Long COVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series - Gil et al.
"Both Long COVID and ME/CFS are characterized by dysfunctional CD8 T-cells with severe deficiencies in their abilities to produce IFNγ and TNFα. In a small Long COVID and ME/CFS case series, patients' immune deficiency and health improve during treatment period with a neubilzed antioxidant, anti-pathogen and immune-modulatory pharmacological agent."
Article | Thread
Frontiers in Neuroscience
Subcortical and Default Mode Network connectivity is impaired in ME/CFS - Inderyas et al
"Compared functional connectivity differences between 31 ME/CFS and 15 healthy controls using 7 Tesla MRI."
"This novel investigation is the first to report extensive involvement of aberrant ponto-cerebellar connections consistent with ME/CFS symptomatology."
Article | Thread
International Journal of Tryptophan Research
Urine Metabolite Analysis to Identify Pathomechanisms of Long COVID: A Pilot Study - Taenzer et al
25 Long Covid, 8 ME/CFS and 8 healthy controls. "...our results suggest that amino acid metabolism and neurotransmitter synthesis is disturbed in patients with LC and ME/CFS."
Article | Thread
iScience
Glymphatic system dysfunction in recovered patients with mild COVID-19: A DTI-ALPS study — Lin Wu et al.
“In this study, we demonstrated that mild COVID-19 patients experienced asymmetric bilateral glymphatic function decline after four months of recovery, and the decrease in glymphatic function was more obvious in older recovered patients.”
Article | Thread
iScience
Single-cell RNA-Seq reveals intracellular microbial diversity within immune cells during SARS-CoV-2 infection and recovery — Sunita Yadav et al.
“We utilized single-cell RNA-seq from PBMCs to probe intracellular microbes in healthy, SARS-CoV-2-positive, and recovered individuals.” “Among 76 bacterial species detected, 16 showed significant abundance differences.”
Article | Thread
Pathogens and Immunity
Arterial Stiffness and Oxidized LDL Independently Associated With Post-Acute Sequalae of SARS-CoV-2 — Sokratis Zisis et al.
“There is evidence of an independent association between PASC, ox-LDL, and arterial stiffness with neurological and/or cardiopulmonary phenotypes having the worst arterial elasticity.”
Article | Thread
Psychosocial research and commentary
The European Journal of Health Economics
Impact of Long COVID on productivity and informal caregiving — Kwon et al.
“This study hence finds that the younger working age population has been disproportionately affected in terms of labour market participation.”
Article | Thread
Preprint: MedRxiv
Healthcare utilisation in people with long COVID: an OpenSAFELY cohort study — Liang-Yu Lin et al.
“Our study found that people with long COVID had increased healthcare utilisation and costs across all healthcare sectors, compared with people without long COVID.” ”We showed that people with a long COVID diagnosis typically had a higher historical healthcare burden, but that a long COVID diagnosis greatly increased their utilisation and the associated cost to the health service.”
Article | Thread
Preprint: Research Square
Long-Term Effects of COVID-19 in Children and Young People: A 24-Month National Cohort Study — Snehal Pinto Pereira et al.
“We found about one-quarter of CYP fulfilled the published PCC research definition at 24-months after either an initial negative or positive PCR test, perhaps reflecting that by 24-months all CYP are likely to have been infected at least once even if a proportion are asymptomatic and unaware that they have been infected.”
Article | Thread
Quarterly Journal of Speech
Framing the activists: gender, race, and rhetorical disability in contested illnesses - Jo Hsu
This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases.
Article | Thread
Value in Health
Cost-Effectiveness of Online Cognitive Behavioral Therapy for Children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Compared to Online Activity Management: FITNET-NHS Trial Findings - Cochrane et al.
This poster presentation reports the first results from the £1M FITNET-NHS trial for ME/CFS at Bristol University. The authors report that 'FITNET-NHS (online CBT) is unlikely to be cost-effective compared to online Activity Management' for children with ME/CFS.
Article | Thread
Trial by Error by David Tuller Disastrous Results for Professor Crawley's Paediatric Online CBT Trial
"Pediatrician Esther Crawley, Bristol University’s mathematically and factually challenged grant magnet, has released what seem to be the first outcome results from her much-hyped but fatally flawed FITNET-NHS trial—and they are disastrous."
Article l Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, advocacy and media
UK Yahoo News Council responds to billboard criticism from long Covid campaigners
"The Medical Research Council has reacted to criticism by long Covid campaigners who put up a large billboard near its Swindon office." Responding to the awareness raising campaign and call for more research funding the MRC lists its funding for LC and ME/CFS research.
Article | Thread
The Sick Times Long Covid advocates send "unhappy holiday" cards to their representatives
About a campaign organised by the Long Covid Moonshot demanding more funding and help for infection-associated chronic illnesses.
Article l Thread
ABC News Long COVID will take your health, your wealth - then it will come for your marriage
Article about how illnesses such as Long Covid and ME not only affect the patients, but also their partners, family and society overall. David Putrino is among those interviewed and says he wishes people understood the social impact of long COVID: "I'm talking about the workforce being diminished, the fact that people can't think the way they used to think - we're losing intellectual capital, we're losing physical capital, we're losing social capital".
Article l Thread
Denmark The Danish newspaper B.T. shared the story of severe ME sufferer who hasn't been able to take a shower since April and is missing out on her life. It also mentions how the Danish classification of ME as a functional disorder is harmful for the patients.
Article l Thread
Finland Article about 32 year old Niko who suffers from severe ME and despite being bed bound has been declared fit for work.
Article l Thread
Norway ME sufferer and specialist in psychology Frøydis Lilledalen has given a talk on YouTube titled "With hope for 2024" as a Christmas greeting for ME patients.
Talk l Thread
Compilation 2023 Forum member Kalliope has made a compilation of media articles about ME throughout the year based on the forum's weekly news briefs. There's been an upward trend over the last five years starting in 2019 with 10 ME articles to this year with 128 articles.
Thread
..................
Coming Events
USA - NIH Next two ME/CFS Research Roadmap webinars
Topic: Less Studied Pathologies
Friday, January 5, 11 AM Pacific / 8 AM Eastern
Topic: Circulation
Thursday, January 11, 11 AM Pacific / 8 AM Eastern
Webinars will be recorded and posted online, with a transcript, after the event.
Agendas | Registration | Thread
In memory of Beth Mazur
A memorial service will be held on January 13 at 1 PM Pacific Time in San Francisco. "Anyone who feels that their life was touched by hers in any way is invited. We will also stream it." ME/CFS and Long Covid patients and allies are welcome. Add your name to the evite to get more details.
Evite | Thread (members only)
...................
Research news
UK DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."
Thread
WE and ME Foundation
The WE and ME foundation has announced the recipients of the 2023 Johadamis ME/CFS € 100.000 Research Grant for the project "UNRAVELING ME/CFS": The Role of Hidden Viral Infections in Peripheral Blood and Gut-Specific Lymphatic Tissue in the Pathogenesis of ME/CFS. The project is led by Dr. Max Augustin and Prof. Dr. Alexander Zoulafy from Clinic Favoriten Vienna.
Article | Thread
USA - NIH Recordings have been posted for both days of the Dec. 12-13 webinar, Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from Long COVID. Closed captions available.
Day 1 | Day 2 | Thread
UK ME/CFS research Forum member Andy has started a thread gathering information on current studies of ME/CFS, or that include ME/CFS in their description, funded by UK charities and government funders.
Thread
...............
Research
Biomedical ME/CFS and Long Covid research
Brain, Behaviour and Immunity - Health
Identification of CD8 T-cell dysfunction associated with symptoms in ME/CFS and Long COVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series - Gil et al.
"Both Long COVID and ME/CFS are characterized by dysfunctional CD8 T-cells with severe deficiencies in their abilities to produce IFNγ and TNFα. In a small Long COVID and ME/CFS case series, patients' immune deficiency and health improve during treatment period with a neubilzed antioxidant, anti-pathogen and immune-modulatory pharmacological agent."
Article | Thread
Frontiers in Neuroscience
Subcortical and Default Mode Network connectivity is impaired in ME/CFS - Inderyas et al
"Compared functional connectivity differences between 31 ME/CFS and 15 healthy controls using 7 Tesla MRI."
"This novel investigation is the first to report extensive involvement of aberrant ponto-cerebellar connections consistent with ME/CFS symptomatology."
Article | Thread
International Journal of Tryptophan Research
Urine Metabolite Analysis to Identify Pathomechanisms of Long COVID: A Pilot Study - Taenzer et al
25 Long Covid, 8 ME/CFS and 8 healthy controls. "...our results suggest that amino acid metabolism and neurotransmitter synthesis is disturbed in patients with LC and ME/CFS."
Article | Thread
iScience
Glymphatic system dysfunction in recovered patients with mild COVID-19: A DTI-ALPS study — Lin Wu et al.
“In this study, we demonstrated that mild COVID-19 patients experienced asymmetric bilateral glymphatic function decline after four months of recovery, and the decrease in glymphatic function was more obvious in older recovered patients.”
Article | Thread
iScience
Single-cell RNA-Seq reveals intracellular microbial diversity within immune cells during SARS-CoV-2 infection and recovery — Sunita Yadav et al.
“We utilized single-cell RNA-seq from PBMCs to probe intracellular microbes in healthy, SARS-CoV-2-positive, and recovered individuals.” “Among 76 bacterial species detected, 16 showed significant abundance differences.”
Article | Thread
Pathogens and Immunity
Arterial Stiffness and Oxidized LDL Independently Associated With Post-Acute Sequalae of SARS-CoV-2 — Sokratis Zisis et al.
“There is evidence of an independent association between PASC, ox-LDL, and arterial stiffness with neurological and/or cardiopulmonary phenotypes having the worst arterial elasticity.”
Article | Thread
Psychosocial research and commentary
The European Journal of Health Economics
Impact of Long COVID on productivity and informal caregiving — Kwon et al.
“This study hence finds that the younger working age population has been disproportionately affected in terms of labour market participation.”
Article | Thread
Preprint: MedRxiv
Healthcare utilisation in people with long COVID: an OpenSAFELY cohort study — Liang-Yu Lin et al.
“Our study found that people with long COVID had increased healthcare utilisation and costs across all healthcare sectors, compared with people without long COVID.” ”We showed that people with a long COVID diagnosis typically had a higher historical healthcare burden, but that a long COVID diagnosis greatly increased their utilisation and the associated cost to the health service.”
Article | Thread
Preprint: Research Square
Long-Term Effects of COVID-19 in Children and Young People: A 24-Month National Cohort Study — Snehal Pinto Pereira et al.
“We found about one-quarter of CYP fulfilled the published PCC research definition at 24-months after either an initial negative or positive PCR test, perhaps reflecting that by 24-months all CYP are likely to have been infected at least once even if a proportion are asymptomatic and unaware that they have been infected.”
Article | Thread
Quarterly Journal of Speech
Framing the activists: gender, race, and rhetorical disability in contested illnesses - Jo Hsu
This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases.
Article | Thread
Value in Health
Cost-Effectiveness of Online Cognitive Behavioral Therapy for Children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Compared to Online Activity Management: FITNET-NHS Trial Findings - Cochrane et al.
This poster presentation reports the first results from the £1M FITNET-NHS trial for ME/CFS at Bristol University. The authors report that 'FITNET-NHS (online CBT) is unlikely to be cost-effective compared to online Activity Management' for children with ME/CFS.
Article | Thread
Trial by Error by David Tuller Disastrous Results for Professor Crawley's Paediatric Online CBT Trial
"Pediatrician Esther Crawley, Bristol University’s mathematically and factually challenged grant magnet, has released what seem to be the first outcome results from her much-hyped but fatally flawed FITNET-NHS trial—and they are disastrous."
Article l Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube