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News in Brief - July 2023
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Week beginning 3rd July 2023
News, articles and advocacy
Europe
At the 9th Congress of the European Academy of Neurology on Underprioritized Neurology Conditions and Symptoms. One of the people participating in the discussion was Gracemarie Bricalli, representing the European ME Alliance (EMEA), talking about ME/CFS.
Article | Thread
Germany The newspaper Tagesspiel has written an article about planned initiatives for Long Covid that will be presented on Wednesday by the Minister of Health Professor Karl Lauterbach and by Professor Carmen Scheibenbogen.
On Twitter Prof. Lauterbach says the initiatives are for both Long Covid and ME/CFS.
Article l Tweet l Thread
USA Solve M.E. Oved Amitay will be stepping down from his role as President and CEO.
Thread
USA National Academies of Sciences, Engineering, and Medicine
Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors
The Touched By Lyme blog reports on the June 29-30 event and the attempt to shift the paradigm and break down silos in the research done for these illnesses.
Blog | Thread
World ME Alliance has released a guide called “Involving People with ME and Other Energy Limiting Conditions" in order to "promote inclusivity and empower individuals" who live with these conditions. Currently available in English and French, more languages to come.
Announcement | Thread
Video: Dr William Weir A talk entitled "ME/CFS: Past, Present & Future", hosted by the Irish ME/CFS Association at 5 locations in Ireland, is now available on YouTube. Duration 1 hour 7 minutes.
Video | Thread
British Medical Association First major survey of doctors with Long Covid reveals debilitating impact on health, life and work
In this press release on a report, entitled "Over-exposed and under-protected: the long-term impact of COVID-19 on doctor", results of a survey of over 600 doctors with Long Covid are highlighted. Key findings include high proportions infected at work with lack of respiratory protective equipment; ongoing symptoms and impact on ability to work; and lack of medical investigation and referral to specialist clinics.
Press release | Report | Thread
Sky News One in five doctors with long COVID forced to stop working or cut back hours
About the above BMA report. Professor David Strain says: "We can't afford to have fully trained, very able staff, not able to do the job they've been trained for at this moment, it's a disaster in a health service that is very short-staffed already". Dr. Amy Small says: "So many of us are still ill, many of us have lost our jobs and their houses and their livelihoods, and they're not likely to get them back anytime soon so this isn't a past problem, it's a very live problem which is going to have ongoing consequences for many years".
Article l Thread
The Sydney Morning Herald What is POTS, and how is it related to COVID?
A short and informative article on POTS following Covid-19. It's estimated that 200,000 Australians are living with it.
Article l Thread
The Netherlands
The science program 'Focus' has broadcasted a two-part documentary (in Dutch) on Long Covid called 'Ziek na corona'.
Video | Thread
JAMA Skeptical of Skeptics
An article from 1991 by MD and ME sufferer Thomas L. English."Four years ago I was diagnosed as having chronic fatigue syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering."
Article (paywalled) l Full text by NJME/CFSA l Thread
..........
Coming events
ME Association "Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) joins Healthwatch Northumberland on Friday 14th July 1pm-2pm to talk about Long Covid." This is a free online event and you can register to join via the link in the article.
Article | Thread
#MEAction "Caregiver Support Call"
Free online support group for caregivers of people with ME, Long Covid and associated conditions will be held on Saturday, July 15, 3:30 pm EDT.
Announcement | Thread
See #MEAction calendar of events for more support groups.
Solve M.E. will host their next Advocacy Cafe, a monthly session to help US advocates working on policy, on July 21 at 12:00 pm Pacific Time. No registration required.
Announcement | Thread
Bateman Horne Center "Living Alone w/Chronic Illness"
Free online support group, advanced registration required.
Tuesday, July 18, 1 - 2 PM Mountain Time
Announcement | Thread
See Bateman Horne Center calendar of events for more support groups.
Sweden Digital seminar August 30th about ME in general practice organised by Akademiskt primärvårdcentrum. Lecturers are Kent Nilsson, MD, Anna Lindquist, MD, Ewa Wadhagen Wedlund, Occupational therapist, and Jeanette Sass, Physiotherapist. The seminar is for health care workers in Region Stockholm.
More information l Thread
...........
Research news and commentary
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
The science bit "A science that does not allow opposing opinions abolishes knowledge." Er, kind of
Professor Brian Hughes and colleagues have responded to a recent ME review in a German neurology journal with familiar and outdated psychosomatic views. Hughes et al provided a critique which in 8 points explained why the review was not in line with current evidence. The journal published a reply from the review authors which Hughes deems as poor. Hughes comments: "It seems that editors are increasingly sitting on the sidelines these days.." and "Weak arguments are given the same airtime as strong ones, all in the interest of "balance". This practice skews scholarship".
Article l Thread
............
Research
ME/CFS research
Brain, Behavior, & Immunity - Health
Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in [ME/CFS] - Uhde, Vernon et al.
"...we identify a state of suppressed acute-phase innate immune response to microbial translocation in conjunction with a compromised gut epithelium in ME/ CFS. This immunosuppression, along with observed enhancement of compensatory antibody responses to counter the microbial translocation, was associated with and may be mediated by alterations in glucose and citrate metabolism and an IL-10 immunoregulatory response."
Paper | Thread
The Korean Journal of Pain
Review article: Antimicrobial therapies for chronic pain (part 2): the prevention and treatment of chronic pain - Wang et al
"Antimicrobials have demonstrated analgesic effects in conditions that involve dysbiosis or potential subclinical infection". ME/CFS is included in the list. "...
when equipoise exists among several antimicrobial treatment options, the potential analgesic benefits of certain antimicrobial agents might be a valuable aspect to consider in clinical decision-making."
Article | Thread
Journal of Translational Medicine
A systematic review and meta-analysis of urinary biomarkers in (ME/CFS) - Taccori et al
Few relevant studies were found and results on possible biomarkers such as cortisol and the metabolome were too inconsistent between studies and sample sizes too small to draw conclusions.
Article | Thread
Long Covid research
Frontiers in Immunology
Divergent Adaptive Immune Responses Define Two Types Of Long Covid — Kervevan et al.
“These findings provide evidence for two major types of antiviral immune responses in long COVID. Seropositive patients showed coordinated cellular and humoral responses at least as high as those of recovered patients. In contrast, ELISA-seronegative long COVID patients showed overall low antiviral responses, with detectable specific CD4+ T cells and/or antibodies in close to half of patients (52.2%).”
Article | Thread
Preprint: MedRxiv
Genome-wide Association Study of Long COVID — Vilma Lammi et al.
“In this study, we aimed to understand the host genetic factors that contribute to Long COVID, using data from 24 studies across 16 countries. Our analysis identified genetic variants within the FOXP4 locus as a risk factor for Long COVID.”
Article | Thread
The Journal of Chemical Physics
SARS-COV-2 spike protein fragment eases amyloidogenesis of α-synuclein — Chesney et al.
“Parkinson’s disease is accompanied by the presence of amyloids in the brain that are formed of α-synuclein chains.” “Using molecular dynamic simulations, we show that the fragment FKNIDGYFKI of the spike protein, which is unique for SARS-COV-2, preferentially shifts the ensemble of α-synuclein monomer toward rod-like fibril seeding conformations and, at the same time, differentially stabilizes this polymorph over the competing twister-like structure.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
Europe
At the 9th Congress of the European Academy of Neurology on Underprioritized Neurology Conditions and Symptoms. One of the people participating in the discussion was Gracemarie Bricalli, representing the European ME Alliance (EMEA), talking about ME/CFS.
Article | Thread
Germany The newspaper Tagesspiel has written an article about planned initiatives for Long Covid that will be presented on Wednesday by the Minister of Health Professor Karl Lauterbach and by Professor Carmen Scheibenbogen.
On Twitter Prof. Lauterbach says the initiatives are for both Long Covid and ME/CFS.
Article l Tweet l Thread
USA Solve M.E. Oved Amitay will be stepping down from his role as President and CEO.
Thread
USA National Academies of Sciences, Engineering, and Medicine
Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors
The Touched By Lyme blog reports on the June 29-30 event and the attempt to shift the paradigm and break down silos in the research done for these illnesses.
Blog | Thread
World ME Alliance has released a guide called “Involving People with ME and Other Energy Limiting Conditions" in order to "promote inclusivity and empower individuals" who live with these conditions. Currently available in English and French, more languages to come.
Announcement | Thread
Video: Dr William Weir A talk entitled "ME/CFS: Past, Present & Future", hosted by the Irish ME/CFS Association at 5 locations in Ireland, is now available on YouTube. Duration 1 hour 7 minutes.
Video | Thread
British Medical Association First major survey of doctors with Long Covid reveals debilitating impact on health, life and work
In this press release on a report, entitled "Over-exposed and under-protected: the long-term impact of COVID-19 on doctor", results of a survey of over 600 doctors with Long Covid are highlighted. Key findings include high proportions infected at work with lack of respiratory protective equipment; ongoing symptoms and impact on ability to work; and lack of medical investigation and referral to specialist clinics.
Press release | Report | Thread
Sky News One in five doctors with long COVID forced to stop working or cut back hours
About the above BMA report. Professor David Strain says: "We can't afford to have fully trained, very able staff, not able to do the job they've been trained for at this moment, it's a disaster in a health service that is very short-staffed already". Dr. Amy Small says: "So many of us are still ill, many of us have lost our jobs and their houses and their livelihoods, and they're not likely to get them back anytime soon so this isn't a past problem, it's a very live problem which is going to have ongoing consequences for many years".
Article l Thread
The Sydney Morning Herald What is POTS, and how is it related to COVID?
A short and informative article on POTS following Covid-19. It's estimated that 200,000 Australians are living with it.
Article l Thread
The Netherlands
The science program 'Focus' has broadcasted a two-part documentary (in Dutch) on Long Covid called 'Ziek na corona'.
Video | Thread
JAMA Skeptical of Skeptics
An article from 1991 by MD and ME sufferer Thomas L. English."Four years ago I was diagnosed as having chronic fatigue syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering."
Article (paywalled) l Full text by NJME/CFSA l Thread
..........
Coming events
ME Association "Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) joins Healthwatch Northumberland on Friday 14th July 1pm-2pm to talk about Long Covid." This is a free online event and you can register to join via the link in the article.
Article | Thread
#MEAction "Caregiver Support Call"
Free online support group for caregivers of people with ME, Long Covid and associated conditions will be held on Saturday, July 15, 3:30 pm EDT.
Announcement | Thread
See #MEAction calendar of events for more support groups.
Solve M.E. will host their next Advocacy Cafe, a monthly session to help US advocates working on policy, on July 21 at 12:00 pm Pacific Time. No registration required.
Announcement | Thread
Bateman Horne Center "Living Alone w/Chronic Illness"
Free online support group, advanced registration required.
Tuesday, July 18, 1 - 2 PM Mountain Time
Announcement | Thread
See Bateman Horne Center calendar of events for more support groups.
Sweden Digital seminar August 30th about ME in general practice organised by Akademiskt primärvårdcentrum. Lecturers are Kent Nilsson, MD, Anna Lindquist, MD, Ewa Wadhagen Wedlund, Occupational therapist, and Jeanette Sass, Physiotherapist. The seminar is for health care workers in Region Stockholm.
More information l Thread
...........
Research news and commentary
UK DecodeME Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word | Take part | Thread
The science bit "A science that does not allow opposing opinions abolishes knowledge." Er, kind of
Professor Brian Hughes and colleagues have responded to a recent ME review in a German neurology journal with familiar and outdated psychosomatic views. Hughes et al provided a critique which in 8 points explained why the review was not in line with current evidence. The journal published a reply from the review authors which Hughes deems as poor. Hughes comments: "It seems that editors are increasingly sitting on the sidelines these days.." and "Weak arguments are given the same airtime as strong ones, all in the interest of "balance". This practice skews scholarship".
Article l Thread
............
Research
ME/CFS research
Brain, Behavior, & Immunity - Health
Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in [ME/CFS] - Uhde, Vernon et al.
"...we identify a state of suppressed acute-phase innate immune response to microbial translocation in conjunction with a compromised gut epithelium in ME/ CFS. This immunosuppression, along with observed enhancement of compensatory antibody responses to counter the microbial translocation, was associated with and may be mediated by alterations in glucose and citrate metabolism and an IL-10 immunoregulatory response."
Paper | Thread
The Korean Journal of Pain
Review article: Antimicrobial therapies for chronic pain (part 2): the prevention and treatment of chronic pain - Wang et al
"Antimicrobials have demonstrated analgesic effects in conditions that involve dysbiosis or potential subclinical infection". ME/CFS is included in the list. "...
when equipoise exists among several antimicrobial treatment options, the potential analgesic benefits of certain antimicrobial agents might be a valuable aspect to consider in clinical decision-making."
Article | Thread
Journal of Translational Medicine
A systematic review and meta-analysis of urinary biomarkers in (ME/CFS) - Taccori et al
Few relevant studies were found and results on possible biomarkers such as cortisol and the metabolome were too inconsistent between studies and sample sizes too small to draw conclusions.
Article | Thread
Long Covid research
Frontiers in Immunology
Divergent Adaptive Immune Responses Define Two Types Of Long Covid — Kervevan et al.
“These findings provide evidence for two major types of antiviral immune responses in long COVID. Seropositive patients showed coordinated cellular and humoral responses at least as high as those of recovered patients. In contrast, ELISA-seronegative long COVID patients showed overall low antiviral responses, with detectable specific CD4+ T cells and/or antibodies in close to half of patients (52.2%).”
Article | Thread
Preprint: MedRxiv
Genome-wide Association Study of Long COVID — Vilma Lammi et al.
“In this study, we aimed to understand the host genetic factors that contribute to Long COVID, using data from 24 studies across 16 countries. Our analysis identified genetic variants within the FOXP4 locus as a risk factor for Long COVID.”
Article | Thread
The Journal of Chemical Physics
SARS-COV-2 spike protein fragment eases amyloidogenesis of α-synuclein — Chesney et al.
“Parkinson’s disease is accompanied by the presence of amyloids in the brain that are formed of α-synuclein chains.” “Using molecular dynamic simulations, we show that the fragment FKNIDGYFKI of the spike protein, which is unique for SARS-COV-2, preferentially shifts the ensemble of α-synuclein monomer toward rod-like fibril seeding conformations and, at the same time, differentially stabilizes this polymorph over the competing twister-like structure.”
Article | Thread
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 10th July 2023
Part 1 of 2
News, articles and advocacy
Australia Parliamentary Friends For ME/CFS
"Emerge Australia along with members of the ME/CFS community and key stakeholders met in Canberra on Tuesday June 13th for the much awaited launch of the Parliamentary Friends of ME/CFS Group... The three main speakers at the event were Andrew Bretherton a patient from Call for Change Australia, Emerge Australia’s CEO Anne Wilson and Penelope McMillan from ME/CFS Australia."
Article with links | Thread
Australia The government appointed Post-Acute Sequelae of COVID-19 (PASC) Research Plan Expert Advisory Panel will advise on priorities for spending of a $50 million research fund. Forum discussion raises concerns about the appointees and their views on post infectious syndromes.
Government document | Thread
Australia ME/CFS And Long COVID Education In Demand At GPCE Sydney 2023
"Emerge Australia returned to Sydney GPCE this year, 19-21st May, to continue educating GPs about ME/CFS and Long COVID – especially when PEM is a feature. Emerge Australia’s Medical Director, Dr Richard Schoeffel, delivered an Advanced Education course twice during the conference, educating 180 GPs about ME/CFS and Long COVID."
Article | Thread
USA - American Family Physician published a guideline on fatigue in their July issue, "Fatigue in Adults: Evaluation and Management." It includes information on ME/CFS and Long Covid.
Document | Thread
USA - NASEM (National Academies of Sciences, Engineering, and Medicine) has updated their website with video recordings and meeting materials for their June 29-30 event, a workshop on research for infection-associated chronic illness.
Website | Thread
The Times Our grief for Maeve is frozen in time by the wait for an inquest
Sean O´Neill writes about the death of his daughter Maeve who suffered from very severe ME and did not receive the care she needed. The long waiting time for a promised inquest on her death is adding an extra burden to the family, and there are several other families in the same situation.
Article (paywalled) l Thread
..............
Research news
Trial by Error by David Tuller Dutch Team Offers "Dog-Ate-My-Data" Excuses for Not Reporting Null Objective Findings
Dr. Tuller picks apart the poor arguments from researchers for not including objective data in the publication of a Dutch CBT study for Long Covid fatigue.
Article l Thread
UK DecodeME
A reminder to anyone over 16 in the UK with an ME/CFS diagnosis, including those diagnosed following Covid-19 that there is still time to participate in this important study. Participation is from home, so all severity levels can take part.
Spread the word | Take part | Thread
...............
Research
ME/CFS research
Preprint
Bioimpedance spectroscopy characterization of osmotic stress processes in ME/CFS blood samples - Fernandez et al
The authors designed a device and used it on "peripheral blood mononuclear cells from four chronic fatigue patients and four healthy controls, after an osmotic stress of the samples with NaCl solution 1M." Some between group differences in impedance were found.
Preprint | Thread
University of Utah
System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data - Yifei Sun.
In this thesis for a bachelor in computer science, Sun collaborated with the Bateman Horne Center to develop a prototype to collect inertial measurement unit time-series data. Upright Position Time and Hours of Upright Activity more clearly differentiated ME/CFS patients from healthy controls than Step Count.
Thesis | Thread
Medical Research Archive
An understanding of the immune dysfunction in susceptible people who develop the post-viral fatigue syndromes ME/CFS and Long COVID - Walker et al.
This review by the New Zealand research team of Warren Tate looks at immunological factors that may explain why some patients never recover from viral infections. It argues that the corona pandemic "provides an unprecedented opportunity to understand the progression of these post-viral diseases."
Article | Thread
Heliyon
Association analysis between symptomology and herpesvirus IgG antibody concentrations in ME/CFS and multiple sclerosis - Dias Dominguez et al.
The authors studied IGg antibodies against herpesviruses and found that this data "explains "more the symptomology of MS patients than the one of ME/CFS patients."
Article | Thread
Long Covid research
Nature Reviews Immunology
The immunology of long COVID — Altmann et al.
“Here, we focus on current thinking about the pathophysiology of long COVID and the evidence for potential underpinning mechanisms.” “It should be clear from the above that, in the few years that it has taken to recognize and define long COVID, a huge amount of high-quality research has been conducted and many aspects of the puzzle of pathogenesis have been put in place.”
Article | Thread
International Journal of Molecular Sciences
Laboratory Findings and Biomarkers in Long COVID: What Do We Know So Far? Insights into Epidemiology, Pathogenesis, Therapeutic Perspectives and Challenges — Tsilingiris et al.
“Herein, we aim to review the available evidence on the typical laboratory manifestations and candidate biomarkers of LC, their classification based on etiopathogenetic mechanisms and the main LC symptomatology in the frame of the epidemiological and pathogenetic aspects of the syndrome and furthermore assess potential implications in candidate therapeutic interventions.”
Article | Thread
Nature Communications
Chronic inflammation, neutrophil activity, and autoreactivity splits long COVID — Woodruff et al.
“signatures of complement and clotting cascades, active antigen processing, and EGFR signaling were more consistently associated across the group, with the identification of unanticipated targets, such as EREG, that may hold important diagnostic and therapeutic value.”
Article | Thread
Preprint
Determinants of the Onset and Prognosis of the Post-COVID-19 Condition: A 2-Year Prospective Cohort Study — Mateu et al.
Concluding: “Preexisting medical and socioeconomic factors, as well as acute COVID-19 symptoms, predict the development of and recovery from the PCC. Recovery is extremely rare during the first 2 years, posing a major challenge to healthcare systems.”
Article | Thread
Brain Research Bulletin
Chronic inflammation, neuroglia dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between post-COVID-19 symptoms and myalgic encephalomyelitis/chronic fatigue syndrome — Chaves et al.
Hypothesis paper: “Here, we proposed a pathobiological model for post-COVID-19 and ME/CFS based on their common inflammation and dysfunctional glial reactivity, and highlighted the emerging implications of plasmalogen deficiency in the underlying mechanisms”
Article | Thread
................
See next post for part 2.
Part 1 of 2
News, articles and advocacy
Australia Parliamentary Friends For ME/CFS
"Emerge Australia along with members of the ME/CFS community and key stakeholders met in Canberra on Tuesday June 13th for the much awaited launch of the Parliamentary Friends of ME/CFS Group... The three main speakers at the event were Andrew Bretherton a patient from Call for Change Australia, Emerge Australia’s CEO Anne Wilson and Penelope McMillan from ME/CFS Australia."
Article with links | Thread
Australia The government appointed Post-Acute Sequelae of COVID-19 (PASC) Research Plan Expert Advisory Panel will advise on priorities for spending of a $50 million research fund. Forum discussion raises concerns about the appointees and their views on post infectious syndromes.
Government document | Thread
Australia ME/CFS And Long COVID Education In Demand At GPCE Sydney 2023
"Emerge Australia returned to Sydney GPCE this year, 19-21st May, to continue educating GPs about ME/CFS and Long COVID – especially when PEM is a feature. Emerge Australia’s Medical Director, Dr Richard Schoeffel, delivered an Advanced Education course twice during the conference, educating 180 GPs about ME/CFS and Long COVID."
Article | Thread
USA - American Family Physician published a guideline on fatigue in their July issue, "Fatigue in Adults: Evaluation and Management." It includes information on ME/CFS and Long Covid.
Document | Thread
USA - NASEM (National Academies of Sciences, Engineering, and Medicine) has updated their website with video recordings and meeting materials for their June 29-30 event, a workshop on research for infection-associated chronic illness.
Website | Thread
The Times Our grief for Maeve is frozen in time by the wait for an inquest
Sean O´Neill writes about the death of his daughter Maeve who suffered from very severe ME and did not receive the care she needed. The long waiting time for a promised inquest on her death is adding an extra burden to the family, and there are several other families in the same situation.
Article (paywalled) l Thread
..............
Research news
Trial by Error by David Tuller Dutch Team Offers "Dog-Ate-My-Data" Excuses for Not Reporting Null Objective Findings
Dr. Tuller picks apart the poor arguments from researchers for not including objective data in the publication of a Dutch CBT study for Long Covid fatigue.
Article l Thread
UK DecodeME
A reminder to anyone over 16 in the UK with an ME/CFS diagnosis, including those diagnosed following Covid-19 that there is still time to participate in this important study. Participation is from home, so all severity levels can take part.
Spread the word | Take part | Thread
...............
Research
ME/CFS research
Preprint
Bioimpedance spectroscopy characterization of osmotic stress processes in ME/CFS blood samples - Fernandez et al
The authors designed a device and used it on "peripheral blood mononuclear cells from four chronic fatigue patients and four healthy controls, after an osmotic stress of the samples with NaCl solution 1M." Some between group differences in impedance were found.
Preprint | Thread
University of Utah
System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data - Yifei Sun.
In this thesis for a bachelor in computer science, Sun collaborated with the Bateman Horne Center to develop a prototype to collect inertial measurement unit time-series data. Upright Position Time and Hours of Upright Activity more clearly differentiated ME/CFS patients from healthy controls than Step Count.
Thesis | Thread
Medical Research Archive
An understanding of the immune dysfunction in susceptible people who develop the post-viral fatigue syndromes ME/CFS and Long COVID - Walker et al.
This review by the New Zealand research team of Warren Tate looks at immunological factors that may explain why some patients never recover from viral infections. It argues that the corona pandemic "provides an unprecedented opportunity to understand the progression of these post-viral diseases."
Article | Thread
Heliyon
Association analysis between symptomology and herpesvirus IgG antibody concentrations in ME/CFS and multiple sclerosis - Dias Dominguez et al.
The authors studied IGg antibodies against herpesviruses and found that this data "explains "more the symptomology of MS patients than the one of ME/CFS patients."
Article | Thread
Long Covid research
Nature Reviews Immunology
The immunology of long COVID — Altmann et al.
“Here, we focus on current thinking about the pathophysiology of long COVID and the evidence for potential underpinning mechanisms.” “It should be clear from the above that, in the few years that it has taken to recognize and define long COVID, a huge amount of high-quality research has been conducted and many aspects of the puzzle of pathogenesis have been put in place.”
Article | Thread
International Journal of Molecular Sciences
Laboratory Findings and Biomarkers in Long COVID: What Do We Know So Far? Insights into Epidemiology, Pathogenesis, Therapeutic Perspectives and Challenges — Tsilingiris et al.
“Herein, we aim to review the available evidence on the typical laboratory manifestations and candidate biomarkers of LC, their classification based on etiopathogenetic mechanisms and the main LC symptomatology in the frame of the epidemiological and pathogenetic aspects of the syndrome and furthermore assess potential implications in candidate therapeutic interventions.”
Article | Thread
Nature Communications
Chronic inflammation, neutrophil activity, and autoreactivity splits long COVID — Woodruff et al.
“signatures of complement and clotting cascades, active antigen processing, and EGFR signaling were more consistently associated across the group, with the identification of unanticipated targets, such as EREG, that may hold important diagnostic and therapeutic value.”
Article | Thread
Preprint
Determinants of the Onset and Prognosis of the Post-COVID-19 Condition: A 2-Year Prospective Cohort Study — Mateu et al.
Concluding: “Preexisting medical and socioeconomic factors, as well as acute COVID-19 symptoms, predict the development of and recovery from the PCC. Recovery is extremely rare during the first 2 years, posing a major challenge to healthcare systems.”
Article | Thread
Brain Research Bulletin
Chronic inflammation, neuroglia dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between post-COVID-19 symptoms and myalgic encephalomyelitis/chronic fatigue syndrome — Chaves et al.
Hypothesis paper: “Here, we proposed a pathobiological model for post-COVID-19 and ME/CFS based on their common inflammation and dysfunctional glial reactivity, and highlighted the emerging implications of plasmalogen deficiency in the underlying mechanisms”
Article | Thread
................
See next post for part 2.
Week beginning 10th July 2023
Part 2 of 2
UK 2021 NICE ME/CFS Guideline - Commentary
BMJ Journal of Neurology, Neurosurgery and Psychiatry
Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis - White et al. (51 authors including Chalder, Sharpe, Wessely, Fink, Knoop, Wyller)
The authors make 8 arguments to support their conclusion that "... the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability."
Article | Thread | Prior thread on the prereleased 8 points
BMJ News ME/CFS: Researchers question credibility of NICE guidance - Elisabeth Mahase
"Guidance from [NICE] on [ME/CFS] “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed. More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence..."
"NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines."
Article | Thread
BMJ Rapid Response People with ME/CFS welcome the recommendations in the NICE guideline - Dr Charles Shepherd
Reports on his experience on the NICE committee: "They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and acknowledged that people with ME/CFS have consistently reported that CBT was ineffective and that GET made their condition worse - some ending up in wheelchairs as a result of receiving harmful advice on activity management."
Rapid Response | Thread
Dr Shepherd on Facebook: "NB: The first part of my letter, which was concentrating on the conflicts of interest by some of the clinicians and researchers who authored this paper, has not been published."
Thread
Press statement
Kings College London Researchers produce systematic critique of 2021 NICE guideline on CFS and ME
"A new analysis of the 2021 revision of NICE guideline for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) has outlined eight shortcomings in the review process and its interpretation of evidence."
This press statement from the employer of Trudie Chalder and Simon Wessely lists the 8 "anomalies" and provides quotes from Chalder and Garner.
Article | Thread
Commentary
The Science Bit The cries for help are getting louder. And that’s a good sign
Psychology professor Brian Hughes summarises his previous article that demonstrated the logical fallacies in the authors' 8 arguments. He also highlights the long list of conflicts of interest of the authors. He concludes: "The JNNP article is little more than a self-serving letter to a friendly editor, infused with special pleading and groupthink. It has no standing other than as a work of academic contrarianship. It is a cry for help. Please, nobody help them."
Article | Previous article | Thread
MEAction UK publish a copy of their letter sent to the Guardian raising problems with the article. "The guideline is a real improvement on the previous version and the removal of Graded Exercise Therapy as a recommended treatment was greeted with relief."
MEAction UK have also submitted a Rapid response to the Journal JNNP and posted a copy on their website. They explain several key mistakes in the White et al article, including on diagnostic criteria, the use of GRADE in the evidence review, and the claims about fixed increments for graded exercise. "If the treatment was delivered in a different way in practice it would indicate that the GET as researched wasn’t effective in clinical settings."
Article with letter to the Guardian | Article with Rapid response to JNNP | Thread
World ME Alliance NICE guideline is robust and globally supported
"Our 24 member organisations are coordinating a global response to this study to demonstrate, on record, the unity of the ME community."
The article includes a copy of a letter sent to the Guardian.
"... it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives."
Article | Thread
ME Association The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS
“These recommendations have been widely welcomed by the ME/CFS patient community, and by most health professionals who are actively involved in managing people with ME/ CFS in both primary and secondary care here in the UK and overseas.”
Article | Thread
Media articles
The Guardian Chronic fatigue guidance discouraging exercise is flawed, say researchers - Rachel Hall
"Study criticises research method behind new Nice guidelines, which also no longer recommend cognitive behavioural therapy"
Chalder and Garner are quoted supporting the analysis and claiming that the new guideline will harm patients.
NICE is quoted: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. [...] We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
Article | Thread
Canary The Guardian has thrown the ME community under the bus, using bias and misinformation - Steve Topple
"Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades".
Article | Thread
More media articles Yahoo! Life: ‘Shortcomings’ identified in chronic fatigue syndrome guidance - Ella Pickover, PA Health Correspondent
Quotes parts of the JNNP article, and responses from NICE and Charles Shepherd.
Article | Thread
Other media articles also quote the authors' uncritically, some also quoting NICE or Charles Shepherd
Evening Standard | The Independent | Yahoo News | Pulse Today
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Part 2 of 2
UK 2021 NICE ME/CFS Guideline - Commentary
BMJ Journal of Neurology, Neurosurgery and Psychiatry
Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis - White et al. (51 authors including Chalder, Sharpe, Wessely, Fink, Knoop, Wyller)
The authors make 8 arguments to support their conclusion that "... the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability."
Article | Thread | Prior thread on the prereleased 8 points
BMJ News ME/CFS: Researchers question credibility of NICE guidance - Elisabeth Mahase
"Guidance from [NICE] on [ME/CFS] “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed. More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence..."
"NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines."
Article | Thread
BMJ Rapid Response People with ME/CFS welcome the recommendations in the NICE guideline - Dr Charles Shepherd
Reports on his experience on the NICE committee: "They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and acknowledged that people with ME/CFS have consistently reported that CBT was ineffective and that GET made their condition worse - some ending up in wheelchairs as a result of receiving harmful advice on activity management."
Rapid Response | Thread
Dr Shepherd on Facebook: "NB: The first part of my letter, which was concentrating on the conflicts of interest by some of the clinicians and researchers who authored this paper, has not been published."
Thread
Press statement
Kings College London Researchers produce systematic critique of 2021 NICE guideline on CFS and ME
"A new analysis of the 2021 revision of NICE guideline for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) has outlined eight shortcomings in the review process and its interpretation of evidence."
This press statement from the employer of Trudie Chalder and Simon Wessely lists the 8 "anomalies" and provides quotes from Chalder and Garner.
Article | Thread
Commentary
The Science Bit The cries for help are getting louder. And that’s a good sign
Psychology professor Brian Hughes summarises his previous article that demonstrated the logical fallacies in the authors' 8 arguments. He also highlights the long list of conflicts of interest of the authors. He concludes: "The JNNP article is little more than a self-serving letter to a friendly editor, infused with special pleading and groupthink. It has no standing other than as a work of academic contrarianship. It is a cry for help. Please, nobody help them."
Article | Previous article | Thread
MEAction UK publish a copy of their letter sent to the Guardian raising problems with the article. "The guideline is a real improvement on the previous version and the removal of Graded Exercise Therapy as a recommended treatment was greeted with relief."
MEAction UK have also submitted a Rapid response to the Journal JNNP and posted a copy on their website. They explain several key mistakes in the White et al article, including on diagnostic criteria, the use of GRADE in the evidence review, and the claims about fixed increments for graded exercise. "If the treatment was delivered in a different way in practice it would indicate that the GET as researched wasn’t effective in clinical settings."
Article with letter to the Guardian | Article with Rapid response to JNNP | Thread
World ME Alliance NICE guideline is robust and globally supported
"Our 24 member organisations are coordinating a global response to this study to demonstrate, on record, the unity of the ME community."
The article includes a copy of a letter sent to the Guardian.
"... it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives."
Article | Thread
ME Association The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS
“These recommendations have been widely welcomed by the ME/CFS patient community, and by most health professionals who are actively involved in managing people with ME/ CFS in both primary and secondary care here in the UK and overseas.”
Article | Thread
Media articles
The Guardian Chronic fatigue guidance discouraging exercise is flawed, say researchers - Rachel Hall
"Study criticises research method behind new Nice guidelines, which also no longer recommend cognitive behavioural therapy"
Chalder and Garner are quoted supporting the analysis and claiming that the new guideline will harm patients.
NICE is quoted: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. [...] We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
Article | Thread
Canary The Guardian has thrown the ME community under the bus, using bias and misinformation - Steve Topple
"Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades".
Article | Thread
More media articles Yahoo! Life: ‘Shortcomings’ identified in chronic fatigue syndrome guidance - Ella Pickover, PA Health Correspondent
Quotes parts of the JNNP article, and responses from NICE and Charles Shepherd.
Article | Thread
Other media articles also quote the authors' uncritically, some also quoting NICE or Charles Shepherd
Evening Standard | The Independent | Yahoo News | Pulse Today
..............
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 17th July 2023
News, articles and advocacy
MEActionUK's excellent rapid response to the article by White et al, reported in last week's news, has been published by the journal JNNP.
"The ME community support NICE and reject the misguided attack in ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS and ME]"
Rapid response | Thread
World ME Alliance has also submitted a response, not yet published.
Thread
World ME Alliance has published their annual report for 2022-2023. This group has grown from 13 member organisations to 21.
Website | Thread
#MEAction will now host Body Politic’s advocacy work as a project. "As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all."
Announcement | Thread
Germany
It has been reported that instead of €100 million as originally announced, Health Minister Karl Lauterbach (Social Democrat, SPD) wants to make only €21 million available for research on Long Covid.
Article | Thread
UK Parliament All Party Parliamentary Group for ME draft minutes of the meeting on 14th June are available. After election of officers the main subject was severe ME/CFS - patients' experiences and specialist and hospital care.
Minutes | Thread
RNZ Prof Danny Altmann: the burden of long COVID
Interview (text and audio) with Professor Altmann about Long Covid and his recently published Nature review on the immunology of Long Covid. ME is also discussed: "I think we're at a kind of Rosetta Stone moment where understanding one can illuminate the other in a bi-directional way, because so many things that were discussed over the years in ME/CFS are almost certainly relevant for long Covid and vice versa".
Interview l Thread l Thread
UK ME Association Long Covid talk with Dr Charles Shepherd organised with Healthwatch Northumberland. "...about Long Covid and the similarities with ME/Chronic Fatigue Syndrome. He explains what is known about the condition and how functional ability and quality of life might be improved."
Duration 57 minutes.
Video | Thread
Daily Maverick Collusion to exclude Long Covid - the long history of energy-limiting disability denial by insurance firms
Good article by Sam Pearce on the history of the biopsychosocial model of ME from UK psychiatrists and its ties to insurance companies. "Thanks to half a century of being painted as "shirkers and scroungers", people disabled by energy-limiting chronic illness have to suffer stigma as well as their "catastrophic" symptoms".
Pearce also wrote an article in May titled: Exhausting the exhausted - how employers and insurers cruelly add to the burden of Long Covid. "Psychologisation, obfuscation and delaying tactics are deliberately being implemented by employers and insurers to exhaust the already exhausted, to force them to give up".
Article l Article l Thread
Sweden A short interview with Professor Jonas Bergquist by the Swedish University of Agricultural Sciences. He talks about research into horses and whether biochemical markers can be used for finding the right amount of exercise. He also mentions his research into ME as something in his career that feels particular important. "It's a patient group that is completely hidden. The phenomenon is known since a 100 years back, and it's a large group that's affected."
Interview l Thread
Norway Interview with Kristine Kornelia Paulsen about her development from mononucleosis into severe ME. Due to fundraising she has been able to stay at Røysumtunet, an institution with an offer for severe ME patients, and has improved a bit.
Article l Thread
................
Coming Events
Solve M.E. webinar: "The Future of Symptom Tracking"
STAT Health CEO Daniel Lee will discuss an in-ear device that "measures blood flow to the head [and] tracks changes in heart rate and blood pressure trend when users stand up."
Tuesday, July 25, 2-3 PM Pacific Time
Announcement | Thread
................
Research news
Visible app research Imperial and Visible launch app-based health studies into Long COVID
People with Long COVID using the Visible app to track their heart rate and symptoms are being invited to sign up for either of two studies, 'The menstrual cycle and Long COVID' and 'Economic Impact of Long Covid', run by researchers at Imperial College London.
Article | Thread
UK DecodeME Join the world’s largest ME/CFS study
"We aim to find genetic causes of why people become ill with ME/CFS with our ground-breaking research. Take part from your home." The website has information on the study, how to spread the word, and how to take part.
Website | Thread
................
Research
ME/CFS research
Preprint
Short report: Comparison of T-cell Receptor Diversity of people with Myalgic Encephalomyelitis versus controls - Dibble, Ponting et al
Tested blood from 40 each of people with severe ME, mild to moderate ME, MS as a disease comparitor, and healthy controls. "we sequenced the genomic loci of a/d, b and g T-cell receptors (TCR)". "Our findings do not support the hypothesis that blood samples from people with ME/CFS frequently contain altered T-cell receptor diversity."
Preprint | Thread
Journal of Clinical Medicine
Utility of Serum Ferritin for Predicting ME/CFS in Patients with Long COVID
A retrospective observational study of 234 patients who visited a hospital for long COVID. The 50 who were diagnosed with ME/CFS had significantly higher serum Ferritin levels and fatigue scores. "Conclusions: Serum ferritin level is a possible predictor of the development of ME/CFS related to long COVID, especially in female patients."
Paper | Thread
Journal of Health Psychology
A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome - Snell et al.
The authors conducted interviews with men on the experience of having chronic fatigue syndrome. The struggle to come to terms with a different lifestyle and sense of masculinity prevailed.
Article | Thread
BMJ Neurology Open
The journal BMJ Neurology Open is calling for papers on a new Topic Collection called 'Advances in Functional Neurological Disorder'. In the description 'chronic fatigue syndrome' is included as an FND.
Article | Thread
Long Covid research
Clinical Neurophysiology
Myopathy as a cause of Long COVID fatigue: Evidence from quantitative and single fiber EMG and muscle histopathology — Agergaard et al.
“In addition to our previously published mitochondrial changes, inflammation, and capillary injury, we show now in muscle biopsies damage of terminal nerves and motor endplate with abundant basal lamina material.”
Article | Thread
Nature
A common allele of HLA is associated with asymptomatic SARS-CoV-2 infection — Augusto et al.
“we show that T cells from pre-pandemic samples from individuals carrying HLA-B*15:01 were reactive to the immunodominant SARS-CoV-2 S-derived peptide NQKLIANQF. The majority of the reactive T cells displayed a memory phenotype, were highly polyfunctional and were cross-reactive to a peptide derived from seasonal coronaviruses.”
Article | Thread
Clinical Infectious Diseases
Association between duration of SARS-CoV-2 positivity and long COVID — Pozzi et al.
“In an observational study, we analyzed 1,293 healthcare workers previously infected with SARSCoV-2, of which 34.1% developed long COVID. Using a multivariate logistic regression model, we demonstrate that the likelihood of developing long COVID in infected individuals rises with the increasing of duration of infection and that three doses of the BNT162b2 vaccine are protective, even during the Omicron wave.”
Article | Thread
Lancet: eBioMedicine
Hippocampal subfield abnormalities and biomarkers of pathologic brain changes: from SARS-CoV-2 acute infection to post-COVID syndrome — Maria Díez-Cirarda et al.
“In vivo analyses revealed that hippocampal grey matter atrophy is accompanied by altered microstructural integrity, hypoperfusion, and functional connectivity changes in PCS patients.“
Article | Thread
Lancet: eClinicalMedicine
The effects of COVID-19 on cognitive performance in a community-based cohort: a COVID symptom study biobank prospective cohort study — Nathan J. Cheetham et al.
“Cognitive deficits following SARS-CoV-2 infection were detectable nearly two years post infection, and largest for individuals with longer symptom durations, ongoing symptoms, and/or more severe infection. However, no such deficits were detected in individuals who reported full recovery from COVID-19.”
Article | Thread
Preprint
Genetic Risk Factors for Severe and Fatigue Dominant Long COVID and Commonalities with ME/CFS Identified by Combinatorial Analysis - Taylor et al.
In this preprint, the authors evaluated genetic signatures previously identified in an ME/CFS population against this long COVID population to understand similarities with other fatigue disorders that may be triggered by a prior viral infection.
Article | Thread
Clinical Infectious Diseases
Issues with Expectation Bias, Absence of Data Relating to Objective Trial Outcome Measures, the Use of Low Quality Trial Design Methods and Choice of Flawed Psychological Model in ReCOVer Trial for Prolonged Fatigue Post Covid-19 Infection - Joan Crawford.
In this letter S4ME forum member Joan Crawford highlights multiple flaws in a Dutch trial of cognitive behavioral therapy for Long Covid.
Article | Thread
...................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
MEActionUK's excellent rapid response to the article by White et al, reported in last week's news, has been published by the journal JNNP.
"The ME community support NICE and reject the misguided attack in ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS and ME]"
Rapid response | Thread
World ME Alliance has also submitted a response, not yet published.
Thread
World ME Alliance has published their annual report for 2022-2023. This group has grown from 13 member organisations to 21.
Website | Thread
#MEAction will now host Body Politic’s advocacy work as a project. "As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all."
Announcement | Thread
Germany
It has been reported that instead of €100 million as originally announced, Health Minister Karl Lauterbach (Social Democrat, SPD) wants to make only €21 million available for research on Long Covid.
Article | Thread
UK Parliament All Party Parliamentary Group for ME draft minutes of the meeting on 14th June are available. After election of officers the main subject was severe ME/CFS - patients' experiences and specialist and hospital care.
Minutes | Thread
RNZ Prof Danny Altmann: the burden of long COVID
Interview (text and audio) with Professor Altmann about Long Covid and his recently published Nature review on the immunology of Long Covid. ME is also discussed: "I think we're at a kind of Rosetta Stone moment where understanding one can illuminate the other in a bi-directional way, because so many things that were discussed over the years in ME/CFS are almost certainly relevant for long Covid and vice versa".
Interview l Thread l Thread
UK ME Association Long Covid talk with Dr Charles Shepherd organised with Healthwatch Northumberland. "...about Long Covid and the similarities with ME/Chronic Fatigue Syndrome. He explains what is known about the condition and how functional ability and quality of life might be improved."
Duration 57 minutes.
Video | Thread
Daily Maverick Collusion to exclude Long Covid - the long history of energy-limiting disability denial by insurance firms
Good article by Sam Pearce on the history of the biopsychosocial model of ME from UK psychiatrists and its ties to insurance companies. "Thanks to half a century of being painted as "shirkers and scroungers", people disabled by energy-limiting chronic illness have to suffer stigma as well as their "catastrophic" symptoms".
Pearce also wrote an article in May titled: Exhausting the exhausted - how employers and insurers cruelly add to the burden of Long Covid. "Psychologisation, obfuscation and delaying tactics are deliberately being implemented by employers and insurers to exhaust the already exhausted, to force them to give up".
Article l Article l Thread
Sweden A short interview with Professor Jonas Bergquist by the Swedish University of Agricultural Sciences. He talks about research into horses and whether biochemical markers can be used for finding the right amount of exercise. He also mentions his research into ME as something in his career that feels particular important. "It's a patient group that is completely hidden. The phenomenon is known since a 100 years back, and it's a large group that's affected."
Interview l Thread
Norway Interview with Kristine Kornelia Paulsen about her development from mononucleosis into severe ME. Due to fundraising she has been able to stay at Røysumtunet, an institution with an offer for severe ME patients, and has improved a bit.
Article l Thread
................
Coming Events
Solve M.E. webinar: "The Future of Symptom Tracking"
STAT Health CEO Daniel Lee will discuss an in-ear device that "measures blood flow to the head [and] tracks changes in heart rate and blood pressure trend when users stand up."
Tuesday, July 25, 2-3 PM Pacific Time
Announcement | Thread
................
Research news
Visible app research Imperial and Visible launch app-based health studies into Long COVID
People with Long COVID using the Visible app to track their heart rate and symptoms are being invited to sign up for either of two studies, 'The menstrual cycle and Long COVID' and 'Economic Impact of Long Covid', run by researchers at Imperial College London.
Article | Thread
UK DecodeME Join the world’s largest ME/CFS study
"We aim to find genetic causes of why people become ill with ME/CFS with our ground-breaking research. Take part from your home." The website has information on the study, how to spread the word, and how to take part.
Website | Thread
................
Research
ME/CFS research
Preprint
Short report: Comparison of T-cell Receptor Diversity of people with Myalgic Encephalomyelitis versus controls - Dibble, Ponting et al
Tested blood from 40 each of people with severe ME, mild to moderate ME, MS as a disease comparitor, and healthy controls. "we sequenced the genomic loci of a/d, b and g T-cell receptors (TCR)". "Our findings do not support the hypothesis that blood samples from people with ME/CFS frequently contain altered T-cell receptor diversity."
Preprint | Thread
Journal of Clinical Medicine
Utility of Serum Ferritin for Predicting ME/CFS in Patients with Long COVID
A retrospective observational study of 234 patients who visited a hospital for long COVID. The 50 who were diagnosed with ME/CFS had significantly higher serum Ferritin levels and fatigue scores. "Conclusions: Serum ferritin level is a possible predictor of the development of ME/CFS related to long COVID, especially in female patients."
Paper | Thread
Journal of Health Psychology
A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome - Snell et al.
The authors conducted interviews with men on the experience of having chronic fatigue syndrome. The struggle to come to terms with a different lifestyle and sense of masculinity prevailed.
Article | Thread
BMJ Neurology Open
The journal BMJ Neurology Open is calling for papers on a new Topic Collection called 'Advances in Functional Neurological Disorder'. In the description 'chronic fatigue syndrome' is included as an FND.
Article | Thread
Long Covid research
Clinical Neurophysiology
Myopathy as a cause of Long COVID fatigue: Evidence from quantitative and single fiber EMG and muscle histopathology — Agergaard et al.
“In addition to our previously published mitochondrial changes, inflammation, and capillary injury, we show now in muscle biopsies damage of terminal nerves and motor endplate with abundant basal lamina material.”
Article | Thread
Nature
A common allele of HLA is associated with asymptomatic SARS-CoV-2 infection — Augusto et al.
“we show that T cells from pre-pandemic samples from individuals carrying HLA-B*15:01 were reactive to the immunodominant SARS-CoV-2 S-derived peptide NQKLIANQF. The majority of the reactive T cells displayed a memory phenotype, were highly polyfunctional and were cross-reactive to a peptide derived from seasonal coronaviruses.”
Article | Thread
Clinical Infectious Diseases
Association between duration of SARS-CoV-2 positivity and long COVID — Pozzi et al.
“In an observational study, we analyzed 1,293 healthcare workers previously infected with SARSCoV-2, of which 34.1% developed long COVID. Using a multivariate logistic regression model, we demonstrate that the likelihood of developing long COVID in infected individuals rises with the increasing of duration of infection and that three doses of the BNT162b2 vaccine are protective, even during the Omicron wave.”
Article | Thread
Lancet: eBioMedicine
Hippocampal subfield abnormalities and biomarkers of pathologic brain changes: from SARS-CoV-2 acute infection to post-COVID syndrome — Maria Díez-Cirarda et al.
“In vivo analyses revealed that hippocampal grey matter atrophy is accompanied by altered microstructural integrity, hypoperfusion, and functional connectivity changes in PCS patients.“
Article | Thread
Lancet: eClinicalMedicine
The effects of COVID-19 on cognitive performance in a community-based cohort: a COVID symptom study biobank prospective cohort study — Nathan J. Cheetham et al.
“Cognitive deficits following SARS-CoV-2 infection were detectable nearly two years post infection, and largest for individuals with longer symptom durations, ongoing symptoms, and/or more severe infection. However, no such deficits were detected in individuals who reported full recovery from COVID-19.”
Article | Thread
Preprint
Genetic Risk Factors for Severe and Fatigue Dominant Long COVID and Commonalities with ME/CFS Identified by Combinatorial Analysis - Taylor et al.
In this preprint, the authors evaluated genetic signatures previously identified in an ME/CFS population against this long COVID population to understand similarities with other fatigue disorders that may be triggered by a prior viral infection.
Article | Thread
Clinical Infectious Diseases
Issues with Expectation Bias, Absence of Data Relating to Objective Trial Outcome Measures, the Use of Low Quality Trial Design Methods and Choice of Flawed Psychological Model in ReCOVer Trial for Prolonged Fatigue Post Covid-19 Infection - Joan Crawford.
In this letter S4ME forum member Joan Crawford highlights multiple flaws in a Dutch trial of cognitive behavioral therapy for Long Covid.
Article | Thread
...................
S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
Week beginning 24th July 2023
News, articles and advocacy
The Atlantic Fatigue Can Shatter a Person
A brilliant article by the Pulitzer price winning journalist Ed Yong on fatigue in diseases such as long COVID and ME/CFS. It discusses PEM and pacing, and medicine's and society's scepticism and misunderstanding of energy-limiting illnesses. Yong has also provided a summary of the article on Twitter.
Article | Webarchive l Twitter summary l Thread
This Week in Virology David Tuller on Long Covid and ME/CFS
"David Tuller returns to TWiV to provide an update on ME/CFS, the PACE trial, developments related to the NICE guidelines, and how similar practices and ideologies are being applied to long COVID." Duration: 1 hour
Interview l Thread
BMJ Journal of Neurology, Neurosurgery and Psychiatry
Rapid Responses to White et al. "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS/ME]"
The MEActionUK Rapid response published last week has been remove by the journal which has posted a statement that begins: "...Notice Regarding Rapid Responses ... Please note that a previously posted Rapid Response was taken down because of inappropriate inflammatory language. While we encourage scientific discourse, it should be polite and non-defamatory."
Notice | Thread
The trustees of MEActionUK have written to JNNP to express their disappointment and ask for clarification of why their RR was removed:
"It is also intimated in the online notice that our response fell foul of the ‘hostile or hateful speech’ clause. This was not mentioned in the email to us and is a particularly egregious accusation in relation to a marginalised patient group who have repeatedly reported being gaslit by the medical establishment. [...] Is it the case that you have been instructed to take this exceptional step by lawyers or under pressure from the authors of the paper and supporters, rather than ‘inflammatory language’?"
MEActionUK | Thread
.............
Coming events
UK Brighton and Sussex Medical School
Looking forwards: formulating the next steps in pain and fatigue research
Friday, September 8 · 12 - 4:30pm BST. In person event with recordings made available afterwards.
Led by Dr Jessica Eccles, this is a public engagement event to discuss priorities for future research on pain and fatigue in ME/CFS, fibromyalgia and Long COVID, possibly including a trial of low dose naltrexone.
Details | Thread
..............
Research news
UK DecodeME "We’ve have over 18k DNA participants! Thank you to everyone who has taken part so far and for the great support in helping us spread the word! We are 75% of the way there, so keep sharing!" People in the UK over 16 diagnosed with ME/CFS, including those diagnosed following Covid-19 infection are encouraged to participate.
Take part | Thread
CDC - A recording of the May 17 CDC SEC Call (SEC = Stakeholder Engagement and Communication) has been posted on YouTube. Links for the video, slide presentation, and call transcript are all available on the CDC website.
Website | Video | Thread
Solve M.E. has posted a recording of their July 25 webinar, a presentation about the STAT Health wearable that measures blood flow to the head, on YouTube.
Video | Thread
..............
Research
ME/CFS research
International Journal of Molecular Sciences
Surveying the Metabolic and Dysfunctional Profiles of T Cells and NK Cells in ME/CFS - Jessica Maya
"This comprehensive review of the ME/CFS immunometabolic literature identifies CD8+ T cell exhaustion as a probable contender, underscores the need for further investigation into the dysfunctional state of CD4+ T cells and NK cells, and explores the functional implications of molecular findings in these immune-cell types."
Article | Thread
Preprint
A Proposed Explainable Artificial Intelligence-Based Machine Learning Model for Discriminative Metabolites for ME/CFS - Yagin et al
Metabalomics data came from a US data repository. Data was from 26 people with ME/CFS and 26 health controls. According to the computer modelling: "The metabolomics of C-glycosyltryptophan, oleoylcholine, cortisone, and 3-hydroxydecanoate were determined to be crucial for ME/CFS diagnosis."
Preprint | Thread
British Journal of General Practice
The experiences of remote consulting for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia in primary care - Leach et al.
This preliminary analysis indicates that remote consulting is acceptable for patients with CFS/ME and fibromyalgia, but only if they feel validated, listened to, and with a clinician who considers a holistic view with continuity of care.
Article | Thread
medRxiv preprint
One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus - Pricoco et al.
This German preprint of the research team of Uta Behrends followed-up on 24 patients with ME/CFS following Infectious mononucleosis, caused by the Epstein-Barr Virus to study the impact on their quality of life.
Article | Thread
Long Covid research
The Lancet Infectious Diseases
Where are the long COVID trials?
This Editorial laments that of 94 registered trials for Long Covid, only 12 of plan to test test pharmacological interventions. Among the reasons for this lack of research, the editorial lists "historical neglect of other postviral conditions such as myalgic encephalomyelitis/chronic fatigue syndrome" and "minimisation of long COVID because of insurance and disability costs".
Article | Thread
The American Journal of Medicine
People with Long Covid and ME/CFS Exhibit Similarly Impaired Balance and Physical Capacity: A Case-Case-Control Study — Lawrence D. Hayes et al.
“The present study's findings support the now overwhelming evidence that ME/CFS and long COVID have real, physiological symptoms that impact health and well-being and need to be directly addressed.”
Article | Thread
Journal of Thrombosis and Haemostasis
Uncertainties about the Roles of Anticoagulation and Microclots in Post-acute Sequelae of SARS-CoV-2 Infection — Jean M. Connors and Robert A.S. Ariëns
“In this Forum article, we focus on findings from patients with PASC that have led to the suggestion of using anticoagulants and discuss alternative considerations.”
Article | Thread
Cochrane Database of Systematic Reviews
Plasmapheresis to remove amyloid fibrin(ogen) particles for treating the post‐COVID‐19 condition — Tilly Fox et al.
“In the absence of reliable research showing that amyloid fibrin(ogen) particles contribute to the pathophysiology of PCC, there is no rationale for plasmapheresis to remove amyloid fibrin(ogen) particles in PCC. Plasmapheresis for this indication should not be used outside the context of a well-conducted randomized controlled trial.”
Article | Thread
Clinical Infectious Diseases
Long COVID: Alice Evans, brucellosis, and reflections on infectious causes of chronic disease — Smith
“Many long COVID patients today will recognize the fatigue Evans describes in her request for work-from-home accommodations, and the frustration she describes at her colleagues’ suggestion that chronic Brucella infection is merely an excuse to collect disability insurance.”
Article | Thread
Preprint: MedRxiv
Cortical thickness alterations and systemic inflammation define long-COVID patients with cognitive impairment — Bianca Besteher et al.
“We identified distinct cortical areas showing a progressive increase in cortical thickness across different groups, starting from healthy individuals who had never been infected with COVID-19, followed by healthy COVID-19 survivors, long-COVID patients without cognitive deficits (MoCA ≥ 26), and finally, long-COVID patients exhibiting significant cognitive deficits (MoCA < 26).”
Article | Thread
Preprint: MedRxiv
Covid-19 related cognitive, structural and functional brain changes among Italian adolescents and young adults: a multimodal longitudinal case-control study — Azzurra Invernizzi et al.
“Here, we investigated the neural activities underlying COVID-19 related outcomes in a case-control study of mildly infected youth enrolled in a longitudinal study in Lombardy, Italy, a global hotspot of COVID-19.” “Our results show persistent structural, functional and cognitive brain changes in key brain areas associated with olfaction and cognition.”
Article | Thread
eBioMedicine
Prolonged indoleamine 2,3-dioxygenase-2 activity and associated cellular stress in post-acute sequelae of SARS-CoV-2 infection — Guo et al.
“With this study we aimed to clarify whether IDO2 is expressed and active in PASC, and may contribute to PASC symptoms and pathophysiology. We showed that monocytes and lymphocytes of PASC patients collected 294 (median) days after the SARS-CoV-2 infection indeed displayed IDO2 activity, which was paralleled by enhanced levels of kynurenine metabolites in the circulation”
Article | Thread
Inflammopharmacology
Multisystem inflammatory syndrome in children (MIS-C): Implications for long COVID — Constantin et al.
“By examining current evidence and insights from the literature, this review aims to contribute to the development of effective prevention and treatment strategies for COVID-19, MIS-C, and long COVID syndromes in children.”
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
The Atlantic Fatigue Can Shatter a Person
A brilliant article by the Pulitzer price winning journalist Ed Yong on fatigue in diseases such as long COVID and ME/CFS. It discusses PEM and pacing, and medicine's and society's scepticism and misunderstanding of energy-limiting illnesses. Yong has also provided a summary of the article on Twitter.
Article | Webarchive l Twitter summary l Thread
This Week in Virology David Tuller on Long Covid and ME/CFS
"David Tuller returns to TWiV to provide an update on ME/CFS, the PACE trial, developments related to the NICE guidelines, and how similar practices and ideologies are being applied to long COVID." Duration: 1 hour
Interview l Thread
BMJ Journal of Neurology, Neurosurgery and Psychiatry
Rapid Responses to White et al. "Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS/ME]"
The MEActionUK Rapid response published last week has been remove by the journal which has posted a statement that begins: "...Notice Regarding Rapid Responses ... Please note that a previously posted Rapid Response was taken down because of inappropriate inflammatory language. While we encourage scientific discourse, it should be polite and non-defamatory."
Notice | Thread
The trustees of MEActionUK have written to JNNP to express their disappointment and ask for clarification of why their RR was removed:
"It is also intimated in the online notice that our response fell foul of the ‘hostile or hateful speech’ clause. This was not mentioned in the email to us and is a particularly egregious accusation in relation to a marginalised patient group who have repeatedly reported being gaslit by the medical establishment. [...] Is it the case that you have been instructed to take this exceptional step by lawyers or under pressure from the authors of the paper and supporters, rather than ‘inflammatory language’?"
MEActionUK | Thread
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Coming events
UK Brighton and Sussex Medical School
Looking forwards: formulating the next steps in pain and fatigue research
Friday, September 8 · 12 - 4:30pm BST. In person event with recordings made available afterwards.
Led by Dr Jessica Eccles, this is a public engagement event to discuss priorities for future research on pain and fatigue in ME/CFS, fibromyalgia and Long COVID, possibly including a trial of low dose naltrexone.
Details | Thread
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Research news
UK DecodeME "We’ve have over 18k DNA participants! Thank you to everyone who has taken part so far and for the great support in helping us spread the word! We are 75% of the way there, so keep sharing!" People in the UK over 16 diagnosed with ME/CFS, including those diagnosed following Covid-19 infection are encouraged to participate.
Take part | Thread
CDC - A recording of the May 17 CDC SEC Call (SEC = Stakeholder Engagement and Communication) has been posted on YouTube. Links for the video, slide presentation, and call transcript are all available on the CDC website.
Website | Video | Thread
Solve M.E. has posted a recording of their July 25 webinar, a presentation about the STAT Health wearable that measures blood flow to the head, on YouTube.
Video | Thread
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Research
ME/CFS research
International Journal of Molecular Sciences
Surveying the Metabolic and Dysfunctional Profiles of T Cells and NK Cells in ME/CFS - Jessica Maya
"This comprehensive review of the ME/CFS immunometabolic literature identifies CD8+ T cell exhaustion as a probable contender, underscores the need for further investigation into the dysfunctional state of CD4+ T cells and NK cells, and explores the functional implications of molecular findings in these immune-cell types."
Article | Thread
Preprint
A Proposed Explainable Artificial Intelligence-Based Machine Learning Model for Discriminative Metabolites for ME/CFS - Yagin et al
Metabalomics data came from a US data repository. Data was from 26 people with ME/CFS and 26 health controls. According to the computer modelling: "The metabolomics of C-glycosyltryptophan, oleoylcholine, cortisone, and 3-hydroxydecanoate were determined to be crucial for ME/CFS diagnosis."
Preprint | Thread
British Journal of General Practice
The experiences of remote consulting for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia in primary care - Leach et al.
This preliminary analysis indicates that remote consulting is acceptable for patients with CFS/ME and fibromyalgia, but only if they feel validated, listened to, and with a clinician who considers a holistic view with continuity of care.
Article | Thread
medRxiv preprint
One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus - Pricoco et al.
This German preprint of the research team of Uta Behrends followed-up on 24 patients with ME/CFS following Infectious mononucleosis, caused by the Epstein-Barr Virus to study the impact on their quality of life.
Article | Thread
Long Covid research
The Lancet Infectious Diseases
Where are the long COVID trials?
This Editorial laments that of 94 registered trials for Long Covid, only 12 of plan to test test pharmacological interventions. Among the reasons for this lack of research, the editorial lists "historical neglect of other postviral conditions such as myalgic encephalomyelitis/chronic fatigue syndrome" and "minimisation of long COVID because of insurance and disability costs".
Article | Thread
The American Journal of Medicine
People with Long Covid and ME/CFS Exhibit Similarly Impaired Balance and Physical Capacity: A Case-Case-Control Study — Lawrence D. Hayes et al.
“The present study's findings support the now overwhelming evidence that ME/CFS and long COVID have real, physiological symptoms that impact health and well-being and need to be directly addressed.”
Article | Thread
Journal of Thrombosis and Haemostasis
Uncertainties about the Roles of Anticoagulation and Microclots in Post-acute Sequelae of SARS-CoV-2 Infection — Jean M. Connors and Robert A.S. Ariëns
“In this Forum article, we focus on findings from patients with PASC that have led to the suggestion of using anticoagulants and discuss alternative considerations.”
Article | Thread
Cochrane Database of Systematic Reviews
Plasmapheresis to remove amyloid fibrin(ogen) particles for treating the post‐COVID‐19 condition — Tilly Fox et al.
“In the absence of reliable research showing that amyloid fibrin(ogen) particles contribute to the pathophysiology of PCC, there is no rationale for plasmapheresis to remove amyloid fibrin(ogen) particles in PCC. Plasmapheresis for this indication should not be used outside the context of a well-conducted randomized controlled trial.”
Article | Thread
Clinical Infectious Diseases
Long COVID: Alice Evans, brucellosis, and reflections on infectious causes of chronic disease — Smith
“Many long COVID patients today will recognize the fatigue Evans describes in her request for work-from-home accommodations, and the frustration she describes at her colleagues’ suggestion that chronic Brucella infection is merely an excuse to collect disability insurance.”
Article | Thread
Preprint: MedRxiv
Cortical thickness alterations and systemic inflammation define long-COVID patients with cognitive impairment — Bianca Besteher et al.
“We identified distinct cortical areas showing a progressive increase in cortical thickness across different groups, starting from healthy individuals who had never been infected with COVID-19, followed by healthy COVID-19 survivors, long-COVID patients without cognitive deficits (MoCA ≥ 26), and finally, long-COVID patients exhibiting significant cognitive deficits (MoCA < 26).”
Article | Thread
Preprint: MedRxiv
Covid-19 related cognitive, structural and functional brain changes among Italian adolescents and young adults: a multimodal longitudinal case-control study — Azzurra Invernizzi et al.
“Here, we investigated the neural activities underlying COVID-19 related outcomes in a case-control study of mildly infected youth enrolled in a longitudinal study in Lombardy, Italy, a global hotspot of COVID-19.” “Our results show persistent structural, functional and cognitive brain changes in key brain areas associated with olfaction and cognition.”
Article | Thread
eBioMedicine
Prolonged indoleamine 2,3-dioxygenase-2 activity and associated cellular stress in post-acute sequelae of SARS-CoV-2 infection — Guo et al.
“With this study we aimed to clarify whether IDO2 is expressed and active in PASC, and may contribute to PASC symptoms and pathophysiology. We showed that monocytes and lymphocytes of PASC patients collected 294 (median) days after the SARS-CoV-2 infection indeed displayed IDO2 activity, which was paralleled by enhanced levels of kynurenine metabolites in the circulation”
Article | Thread
Inflammopharmacology
Multisystem inflammatory syndrome in children (MIS-C): Implications for long COVID — Constantin et al.
“By examining current evidence and insights from the literature, this review aims to contribute to the development of effective prevention and treatment strategies for COVID-19, MIS-C, and long COVID syndromes in children.”
Article | Thread
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S4ME social media: Forum, Facebook, Twitter, Mastodon and YouTube
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News in Brief - August 2023
News in Brief - August 2023