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News in Brief - January 2023
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Week beginning 2nd January 2023
News, articles and advocacy
Germany
The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". The chapter on ME/CFS follows and explicitly recommends the NICE and EUROMENE guidelines, as well as the CDC's recommendations.
Report | Thread
UK NHS England appointments of concern to people with ME/CFS.
Professor Sir Simon Wessely has been appointed as a Director of NHS England.
Dr Adrian Whittington is the new Clinical Lead for Psychological Professions at NHS England and Health Education England. He is also the clinical lead for IAPT (Improving Access to Psychological Therapies) and is quoted on CBT Watch as saying ‘we need to support a psychological approach as the norm for major health conditions. We know that these developments can support people to adjust and manage long term conditions more effectively, reducing unwarranted medical consultations’.
Wessely article | Thread | CBT Watch | Thread
USA - Workwell group announced the formation of Workwell Health to improve medical care for patients living with post-exertional malaise and post-exertional symptom exacerbation. Their new website includes online education/resources for clinicians and a virtual clinic for patients.
Website | Thread
USA - Bateman Horne Center has a blog entry called "Insights Into My Chronic Illness". It contains a letter to a loved one written from the perspective of a person with chronic illness. Originally posted in May 2021 but recently added to our forum's resources section.
Blog | Thread
Long Covid Corrections Letter
A correction letter to the New Republic concerning a problematic column from December by Natalie Shure which misrepresented Long Covid and ME. Anyone can sign.
Letter | Thread
The Scotsman SNP ministers accused of turning their backs on Scots suffering from ME
Short article quoting politicians arguing over whether there is adequate health service provision in Scotland for people with ME.
Article | Thread
The Guardian letters: The struggle to live a normal life with long Covid
Forum member Robert Saunders responds to an article. His letter concludes:
"In order for progress to be made with long Covid, doctors and leaders must acknowledge and learn from the mistakes that have been made with ME/CFS, including the decades of underinvestment in high-quality biomedical research and overinvestment in low-quality psychosocial research."
Letter | Thread
USA Today People who haven't had COVID will likely catch XBB.1.5 – and many will get reinfected, experts say.
The article highlights that this latest variant is spreading rapldiy, it is more infectious than previous variants, and vaccination reduces the risk of serious disease and long Covid.
Article | Thread
Norwegian TV2 write about Heidi Andresen who deteriorated from ME after third dose of Covid-19 vaccination. TV2 say they've been in contact with several ME patients who became worse after 2nd and 3rd dose of vaccine.
Article | Thread
.................
Research news
UK DecodeME The largest ever genetic study of ME/CFS needs more participants aged 16 and over in the UK who have been diagnosed with ME/CFS. The two part study needs tens of thousands to fill in the questionnaire part. Those invited to provide saliva, from which DNA will be extracted, will be sent a spit kit. The aim is for the genetic part of the study to include 25,000 people, including 5,000 diagnosed with ME/CFS following COVID-19 infection.
Information and take part | Thread
USA - The RECOVER Initiative is a program funding Long Covid research. They have produced a series of 18 research review videos, including this week: "Vascular Pathophysiology of Long Covid—research review". Duration 1hr 27min.
Video | Video series | Thread
Job vacancy - ME Research UK Science writer. This is a full time position and involves a range of writing tasks including a lead role in interpreting, analysing and commenting on global ME/CFS research by writing a number of regular pieces on a weekly basis, plus media, social media, press releases, etc. Applications close 27th January 2023.
Details | Thread
UK ME Research Collaborative (MERC) - A reminder that applications are invited for the Patient Advisory Group, a patient and carers group which plays an active role in promoting the voice and inclusion of people with ME/CFS in research activities. Applications are open until the end of February 2023.
Details | Thread
..................
Research
DovePress
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Adolescents: Practical Guidance and Management Challenges - Katherine Rowe
This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness.
Article | Thread
Women's Health Reports
“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia - Merone et al.
The authors conducted interviews with 20 adult Australian women with chronic conditions including chronic fatigue syndrome. There was a shared experience of feeling that the pain and suffering of women was dismissed. Many expressed trauma because of their experiences in health care and often this led to a fear of accessing health services.
Article | Thread
Long Covid research
Frontiers in Immunology
The relationship between chronic immune response and neurodegenerative damage in long COVID-19 — Elizade-Diaz et al
"The goal of this review is to explore the relationship between inflammatory and humoral immune markers and the major neurological damage manifested in post-COVID-19 patients."
Article | Thread
Frontiers in Immunology
Markers of blood-brain barrier disruption increase early and persistently in COVID-19 patients with neurological manifestations — Bonetto et al
"Blood biomarkers of BBB disruption were elevated in COVID-19 patients with levels comparable to or even higher than in ALS patients, pointing to neurological implications over a range of disease severities."
Article | Thread
Sociology of Health and Illness
The long tail of COVID and the tale of long COVID: Diagnostic construction and the management of ignorance — Barker et al
"To varying degrees, diagnoses are ignorance management strategies; they create a pathway through the uncertainty at the core of disease realities. However, while diagnoses circumscribe some types of ignorance, they produce others through the creation of blind spots and paths not taken."
Article | Thread
Sante Publique (in French)
Difficultés rencontrées par les patients COVID long dans le système de santé belge - Kohn et al.
In this Belgian study, researchers conducted interviews with 101 Long Covid patients to better understand their experience. The results showed that patients often experience a lack of empathy from some healthcare professionals and a lack of a proactive approach during the diagnostic assessment.
Article | Thread
The Lancet Respiratory Medicine
A new paradigm is needed to explain long COVID - Saunders et al.
In a brief but controversial commentary, researchers from Aarhus University, Denmark, suggest “it is time to break taboos based on a dualistic understanding of physical versus mental illness and bring in existing knowledge about functional somatic symptoms to provide improved explanations and treatments.”
Article | Thread
..................
Coming events
UK Action for ME "There is only 1 week to go before our Breaking Isolation Workshop, funded by BBC Children in Need! If you are aged 10-14 years old with M.E., register now for our free three-part workshop!" 11, 18, 25 January. 4.15pm on Zoom.
Article | Thread
UK - Post-Viral Illnesses Training Workshop - Exploring the long-term consequences of viral illnesses, learning from lived experience how employers can support their people through this. 26th January, 1-2pm.
Speakers from the ME Association and Brabners law firm.
Details | Thread
USA - #MEAction has announced an online discussion of The Long COVID Survival Guide on Tuesday, January 17, starting at 4pm PST / 6pm CST / 7pm EST. Panel members include editor Fiona Lowenstein and contributors Rachel Robles, Chimére L. Smith, and Terri L. Wilder from the recently released book.
Details | Thread
USA - The New York Public Library will host an online discussion of The Long COVID Survival Guide on Thursday, January 26, from 7 - 8:15 PM EST. Panel members include Chimére L. Smith, Fiona Lowenstein, Heather Hogan and JD Davids.
Details | Thread
...............
In Memory
Kara Jane Spencer A Heartbreaking Announcement
"Kara was a very special young woman who embraced life with love, generosity and endless determination. To know her was to know a unique human being, whose spirit never wavered despite the most tremendous suffering."
"Kara’s dream was to raise £100,000 to establish a post-mortem facility for research into the most severe cases of ME. Her passion, determination and beautiful music have ensured that this dream will live on. All proceeds from her album will continue to go to the fund she set up, and donations in her memory can be made here."
Article | Thread (members only)
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Germany
The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". The chapter on ME/CFS follows and explicitly recommends the NICE and EUROMENE guidelines, as well as the CDC's recommendations.
Report | Thread
UK NHS England appointments of concern to people with ME/CFS.
Professor Sir Simon Wessely has been appointed as a Director of NHS England.
Dr Adrian Whittington is the new Clinical Lead for Psychological Professions at NHS England and Health Education England. He is also the clinical lead for IAPT (Improving Access to Psychological Therapies) and is quoted on CBT Watch as saying ‘we need to support a psychological approach as the norm for major health conditions. We know that these developments can support people to adjust and manage long term conditions more effectively, reducing unwarranted medical consultations’.
Wessely article | Thread | CBT Watch | Thread
USA - Workwell group announced the formation of Workwell Health to improve medical care for patients living with post-exertional malaise and post-exertional symptom exacerbation. Their new website includes online education/resources for clinicians and a virtual clinic for patients.
Website | Thread
USA - Bateman Horne Center has a blog entry called "Insights Into My Chronic Illness". It contains a letter to a loved one written from the perspective of a person with chronic illness. Originally posted in May 2021 but recently added to our forum's resources section.
Blog | Thread
Long Covid Corrections Letter
A correction letter to the New Republic concerning a problematic column from December by Natalie Shure which misrepresented Long Covid and ME. Anyone can sign.
Letter | Thread
The Scotsman SNP ministers accused of turning their backs on Scots suffering from ME
Short article quoting politicians arguing over whether there is adequate health service provision in Scotland for people with ME.
Article | Thread
The Guardian letters: The struggle to live a normal life with long Covid
Forum member Robert Saunders responds to an article. His letter concludes:
"In order for progress to be made with long Covid, doctors and leaders must acknowledge and learn from the mistakes that have been made with ME/CFS, including the decades of underinvestment in high-quality biomedical research and overinvestment in low-quality psychosocial research."
Letter | Thread
USA Today People who haven't had COVID will likely catch XBB.1.5 – and many will get reinfected, experts say.
The article highlights that this latest variant is spreading rapldiy, it is more infectious than previous variants, and vaccination reduces the risk of serious disease and long Covid.
Article | Thread
Norwegian TV2 write about Heidi Andresen who deteriorated from ME after third dose of Covid-19 vaccination. TV2 say they've been in contact with several ME patients who became worse after 2nd and 3rd dose of vaccine.
Article | Thread
.................
Research news
UK DecodeME The largest ever genetic study of ME/CFS needs more participants aged 16 and over in the UK who have been diagnosed with ME/CFS. The two part study needs tens of thousands to fill in the questionnaire part. Those invited to provide saliva, from which DNA will be extracted, will be sent a spit kit. The aim is for the genetic part of the study to include 25,000 people, including 5,000 diagnosed with ME/CFS following COVID-19 infection.
Information and take part | Thread
USA - The RECOVER Initiative is a program funding Long Covid research. They have produced a series of 18 research review videos, including this week: "Vascular Pathophysiology of Long Covid—research review". Duration 1hr 27min.
Video | Video series | Thread
Job vacancy - ME Research UK Science writer. This is a full time position and involves a range of writing tasks including a lead role in interpreting, analysing and commenting on global ME/CFS research by writing a number of regular pieces on a weekly basis, plus media, social media, press releases, etc. Applications close 27th January 2023.
Details | Thread
UK ME Research Collaborative (MERC) - A reminder that applications are invited for the Patient Advisory Group, a patient and carers group which plays an active role in promoting the voice and inclusion of people with ME/CFS in research activities. Applications are open until the end of February 2023.
Details | Thread
..................
Research
DovePress
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Adolescents: Practical Guidance and Management Challenges - Katherine Rowe
This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness.
Article | Thread
Women's Health Reports
“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia - Merone et al.
The authors conducted interviews with 20 adult Australian women with chronic conditions including chronic fatigue syndrome. There was a shared experience of feeling that the pain and suffering of women was dismissed. Many expressed trauma because of their experiences in health care and often this led to a fear of accessing health services.
Article | Thread
Long Covid research
Frontiers in Immunology
The relationship between chronic immune response and neurodegenerative damage in long COVID-19 — Elizade-Diaz et al
"The goal of this review is to explore the relationship between inflammatory and humoral immune markers and the major neurological damage manifested in post-COVID-19 patients."
Article | Thread
Frontiers in Immunology
Markers of blood-brain barrier disruption increase early and persistently in COVID-19 patients with neurological manifestations — Bonetto et al
"Blood biomarkers of BBB disruption were elevated in COVID-19 patients with levels comparable to or even higher than in ALS patients, pointing to neurological implications over a range of disease severities."
Article | Thread
Sociology of Health and Illness
The long tail of COVID and the tale of long COVID: Diagnostic construction and the management of ignorance — Barker et al
"To varying degrees, diagnoses are ignorance management strategies; they create a pathway through the uncertainty at the core of disease realities. However, while diagnoses circumscribe some types of ignorance, they produce others through the creation of blind spots and paths not taken."
Article | Thread
Sante Publique (in French)
Difficultés rencontrées par les patients COVID long dans le système de santé belge - Kohn et al.
In this Belgian study, researchers conducted interviews with 101 Long Covid patients to better understand their experience. The results showed that patients often experience a lack of empathy from some healthcare professionals and a lack of a proactive approach during the diagnostic assessment.
Article | Thread
The Lancet Respiratory Medicine
A new paradigm is needed to explain long COVID - Saunders et al.
In a brief but controversial commentary, researchers from Aarhus University, Denmark, suggest “it is time to break taboos based on a dualistic understanding of physical versus mental illness and bring in existing knowledge about functional somatic symptoms to provide improved explanations and treatments.”
Article | Thread
..................
Coming events
UK Action for ME "There is only 1 week to go before our Breaking Isolation Workshop, funded by BBC Children in Need! If you are aged 10-14 years old with M.E., register now for our free three-part workshop!" 11, 18, 25 January. 4.15pm on Zoom.
Article | Thread
UK - Post-Viral Illnesses Training Workshop - Exploring the long-term consequences of viral illnesses, learning from lived experience how employers can support their people through this. 26th January, 1-2pm.
Speakers from the ME Association and Brabners law firm.
Details | Thread
USA - #MEAction has announced an online discussion of The Long COVID Survival Guide on Tuesday, January 17, starting at 4pm PST / 6pm CST / 7pm EST. Panel members include editor Fiona Lowenstein and contributors Rachel Robles, Chimére L. Smith, and Terri L. Wilder from the recently released book.
Details | Thread
USA - The New York Public Library will host an online discussion of The Long COVID Survival Guide on Thursday, January 26, from 7 - 8:15 PM EST. Panel members include Chimére L. Smith, Fiona Lowenstein, Heather Hogan and JD Davids.
Details | Thread
...............
In Memory
Kara Jane Spencer A Heartbreaking Announcement
"Kara was a very special young woman who embraced life with love, generosity and endless determination. To know her was to know a unique human being, whose spirit never wavered despite the most tremendous suffering."
"Kara’s dream was to raise £100,000 to establish a post-mortem facility for research into the most severe cases of ME. Her passion, determination and beautiful music have ensured that this dream will live on. All proceeds from her album will continue to go to the fund she set up, and donations in her memory can be made here."
Article | Thread (members only)
..............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 9th January 2023
News, articles and advocacy
USA - NIH The NIH is looking for "persons living with ME/CFS, individuals with a family history of ME/CFS, caregivers/care partners for persons with ME/CFS, or ME/CFS patient advocates" to serve on the NANDSC ME/CFS Research Roadmap Working Group. See website for details on eligibility, duties, and how to apply.
Website | Thread
The Science Bit
Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS
Psychology professor Brian Hughes responds to the snippets released on social media of a article expected to be published criticising the 2021 NICE ME/CFS guideline, with 43 authors including the PACE trial leaders.
"given the logical incoherence of the arguments mounted by these authors, and the consequent vapidity of their claim that NICE made eight (or even any) “major errors”, by rights this paper should never be accepted for publication in any journal that values its academic reputation."
Article | Thread
Trial by Error by David Tuller Why is the Department of Veterans Affairs Using a 1988 Definition of Chronic Fatigue Syndrome?
Tuller asks why the Holmes criteria from 1988, which was outdated from the start, are still being used today to assess disability claimants. Also, in a section about ME/CFS from the DVA's War Related Injury and Study Center graded aerobic exercise therapy and psychological therapies are listed as the first treatment suggestions.
Article l Thread
Broken Battery Chronic Fatigue Syndrome is a terrible name
A new excellent video from Broken Battery which explains how the name chronic fatigue syndrome came about and why it has been so problematic. Duration: 2 minutes.
Video l Thread
Podcast In the 7th podcast episode from #MEAction's "Chronically Complex" Jaime Seltzer and Steven Molony interview David Tuller about the PACE trial and other aspects of research into ME.
Podcast l Thread
Norway Article about Christine Moen who recovered from ME after treatment for breast cancer and has raised 700 000 NOK for research into ME at Haukeland University Hospital. Kari Sørland from the research team says they are convinced this is a disease that in principle is reversible and that they know of several patients who have experienced improvement after immune modulating treatment.
Article l Thread
Podcast Long Covid, ME and postviral illness got briefly discussed in the latest episode of "The Problem With Jon Stewart" as an area that is in need of a much more increased research effort. The twitter account Dakota has provided a transcript of the segment.
Podcast l Transcript l Thread
..................
Research news
Long Covid Podcast
"Episode 67 of the Long Covid Podcast is a chat with two wonderful people from the DecodeME genetics study – Professor Chris Ponting who is the lead on the study, and Andy Devereux-Cooke, co-founder of the Science for ME forum and also an investigator (PPI) on the DecodeME Management Group.
We discuss the study itself as well as some of the background behind it.
If you are interested in signing up (or would just like some more information about the study) please go to DecodeME.org.uk"
Podcast | Thread
Europe
The European ME Coalition (EMEC) has made an overview of grants in the second work program of Horizon Europe that may be relevant to ME/CFS researchers.
Article | Thread
..................
Research
Biomedicines
Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis - David Marks
A review article looking at the overlap in symptoms between ME/CFS and Long COVID makes a speculative hypothesis about biological mechanisms.
Article | Thread
COVID-19 and Long COVID research
Nature Reviews Microbiology
Long COVID: major findings, mechanisms and recommendations — Davis, Topol et al
Comprehensive biomedical overview article with lead authors from the Patient-Led Research Collaboration. "To ensure an adequate response to the long COVID crisis, we need research that builds on existing knowledge and is inclusive of the patient experience, training and education for the health-care and research workforce, a public communication campaign, and robust policies and funding to support research and care in long COVID."
Article | Thread
British Medical Journal
Long covid outcomes at one year after mild SARS-CoV-2 infection: nationwide cohort study — Mizrahi et al
Controversial paper that claims "patients with mild covid-19 are at risk for a small number of health outcomes, most of which are resolved within a year from diagnosis". The study only looked at PCR+ patients and has been criticised for lack of patient involvement in design and overlooking symptoms of fatigue and post-exertional malaise.
Article | Thread
Multidisciplinary Respiratory Medicine
Nebivolol: an effective option against long-lasting dyspnoea following COVID-19 pneumonia - a pivotal double-blind, cross-over controlled study — Dal Negro et al
This study looked at the effect on dyspnoea in patients otherwise recovered from COVID pneumonia. Significant symptomatic and physiological improvements were demonstrated after one week treatment with this selective ß1-adrenergic antagonist/ß3 agonist in this cross-over trial.
Article | Thread
....................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
USA - NIH The NIH is looking for "persons living with ME/CFS, individuals with a family history of ME/CFS, caregivers/care partners for persons with ME/CFS, or ME/CFS patient advocates" to serve on the NANDSC ME/CFS Research Roadmap Working Group. See website for details on eligibility, duties, and how to apply.
Website | Thread
The Science Bit
Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS
Psychology professor Brian Hughes responds to the snippets released on social media of a article expected to be published criticising the 2021 NICE ME/CFS guideline, with 43 authors including the PACE trial leaders.
"given the logical incoherence of the arguments mounted by these authors, and the consequent vapidity of their claim that NICE made eight (or even any) “major errors”, by rights this paper should never be accepted for publication in any journal that values its academic reputation."
Article | Thread
Trial by Error by David Tuller Why is the Department of Veterans Affairs Using a 1988 Definition of Chronic Fatigue Syndrome?
Tuller asks why the Holmes criteria from 1988, which was outdated from the start, are still being used today to assess disability claimants. Also, in a section about ME/CFS from the DVA's War Related Injury and Study Center graded aerobic exercise therapy and psychological therapies are listed as the first treatment suggestions.
Article l Thread
Broken Battery Chronic Fatigue Syndrome is a terrible name
A new excellent video from Broken Battery which explains how the name chronic fatigue syndrome came about and why it has been so problematic. Duration: 2 minutes.
Video l Thread
Podcast In the 7th podcast episode from #MEAction's "Chronically Complex" Jaime Seltzer and Steven Molony interview David Tuller about the PACE trial and other aspects of research into ME.
Podcast l Thread
Norway Article about Christine Moen who recovered from ME after treatment for breast cancer and has raised 700 000 NOK for research into ME at Haukeland University Hospital. Kari Sørland from the research team says they are convinced this is a disease that in principle is reversible and that they know of several patients who have experienced improvement after immune modulating treatment.
Article l Thread
Podcast Long Covid, ME and postviral illness got briefly discussed in the latest episode of "The Problem With Jon Stewart" as an area that is in need of a much more increased research effort. The twitter account Dakota has provided a transcript of the segment.
Podcast l Transcript l Thread
..................
Research news
Long Covid Podcast
"Episode 67 of the Long Covid Podcast is a chat with two wonderful people from the DecodeME genetics study – Professor Chris Ponting who is the lead on the study, and Andy Devereux-Cooke, co-founder of the Science for ME forum and also an investigator (PPI) on the DecodeME Management Group.
We discuss the study itself as well as some of the background behind it.
If you are interested in signing up (or would just like some more information about the study) please go to DecodeME.org.uk"
Podcast | Thread
Europe
The European ME Coalition (EMEC) has made an overview of grants in the second work program of Horizon Europe that may be relevant to ME/CFS researchers.
Article | Thread
..................
Research
Biomedicines
Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis - David Marks
A review article looking at the overlap in symptoms between ME/CFS and Long COVID makes a speculative hypothesis about biological mechanisms.
Article | Thread
COVID-19 and Long COVID research
Nature Reviews Microbiology
Long COVID: major findings, mechanisms and recommendations — Davis, Topol et al
Comprehensive biomedical overview article with lead authors from the Patient-Led Research Collaboration. "To ensure an adequate response to the long COVID crisis, we need research that builds on existing knowledge and is inclusive of the patient experience, training and education for the health-care and research workforce, a public communication campaign, and robust policies and funding to support research and care in long COVID."
Article | Thread
British Medical Journal
Long covid outcomes at one year after mild SARS-CoV-2 infection: nationwide cohort study — Mizrahi et al
Controversial paper that claims "patients with mild covid-19 are at risk for a small number of health outcomes, most of which are resolved within a year from diagnosis". The study only looked at PCR+ patients and has been criticised for lack of patient involvement in design and overlooking symptoms of fatigue and post-exertional malaise.
Article | Thread
Multidisciplinary Respiratory Medicine
Nebivolol: an effective option against long-lasting dyspnoea following COVID-19 pneumonia - a pivotal double-blind, cross-over controlled study — Dal Negro et al
This study looked at the effect on dyspnoea in patients otherwise recovered from COVID pneumonia. Significant symptomatic and physiological improvements were demonstrated after one week treatment with this selective ß1-adrenergic antagonist/ß3 agonist in this cross-over trial.
Article | Thread
....................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Last edited by a moderator:
Week beginning 16th January 2023
News, articles and advocacy
USA - The CDC has published an update for their "Systematic Review of the Evidence for Clinical Management of ME/CFS" including responses to public comments.
Website | Thread
Canada - The latest Canadian Medical Association Journal has several short articles about Long Covid. One of them, Treating common and potentially modifiable symptoms of post-COVID-19 condition (long COVID) in adults, includes: "Fatigue and postexertional malaise associated with long COVID should be treated with titrated structured activity and energy conservation strategies".
Journal | Thread
UK ME Association APPG Report: Inform Your MP About The Key Issues Relating To ME/CFS!
"Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report – Rethinking ME – and this highlighted vital recommendations to help people with ME receive good quality health and social care." The MEA encourages members to spread the word about the report with their MP and others.
Article | Thread
UK Parliament has published a Research Briefing paper headed 'Invisible Disabilities in Education and Employment'. The Chronic Illness Inclusion Project describes the publication as a 'landmark moment'. "The briefing highlighted that lack of understanding and stigma from others creates consistent barriers to people with invisible disabilities."
Document | Comment | Thread
Japan - The Japan ME Association has joined the World ME Alliance.
Announcement | Thread
The Unwritten Kara Jane died of M.E. When will we take post-viral illness seriously?
An honest and hard hitting text by Laura Elliot on the recent passing of musician and severe ME sufferer Kara Jane. "Watching our community lose people to this illness time and time again never gets easier. But what makes it far worse, is that governments and medical professionals aren’t paying attention."
Article l Thread
Media coverage of the paper "Long COVID: major findings, mechanisms and recommendations" by Hannah E. Davis et al (see last week's news brief):
The Sydney Morning Herald 'We're all vulnerable': One in 10 people will end up with long COVID, new study says
Comments from Australian experts as Professor Stephen Duckett who says it's "vital that the upcoming Australian Centre of Disease Control has a major focus on chronic conditions stemming from infection, such as long COVID and ME/CFS".
Article l Thread
New Zealand RNZ article 'Risk of debilitating illness from long Covid could grow - epidemiologist Michael Baker'.
"The number of reinfections is important because studies have shown the more times a person is infected, the greater chance they have of developing ongoing symptoms. "Any acute infection that results in a long-term disability is very serious from a social, economic and health perspective," said Baker."
Article | Thread
Science Magazine Positive book review of Ryan Prior's "The Long Haul". The reviewer mentions the connections Prior is making between Long Covid and other post viral illnesses such as ME.
Thread with review
The Washington Post For long covid fatigue, a strategy called 'pacing' helps, but at a cost
A thorough article about managing long Covid with pacing. Includes information about ME and the debate on pacing versus graded exercise therapy as strategies. Jamie Seltzer from #MEAction and Todd Davenport provide good information and advice. Peter White is also interviewed and says he stands by the results from the PACE trial. Whitney Dafoe says ME sufferers should think of pacing as a way of life: "Pacing is how you survive".
Article l Thread
WebMD Can 'Radical Rest' Help With Long COVID Symptoms?
Article about pacing and research into pathophysiological findings in Long Covid. David Putrino says rest and pacing are "currently the best defense we have against uncontrolled disease progression". He continues: "The more we look objectively, the more we see physiological changes that are associated with long COVID. There is a clear organic pathobiology that is causing the fatigue and post-exertional malaise". Article also mentions research by David Systrom and Peter Novak.
Article l Thread
................
Useful resources
Healthcare
What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults - Kingdon et al
This paper, written by 4 members of the guideline committee and previously seen as a preprint, has now been published. It provides a clear summary of key points from the 2021 NICE guideline as a useful guide for clinicians.
Article | Thread
................
Research news
UK DecodeME More UK participants are needed for this research. The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet. Some of the team described a visit this week to the National Biosample Centre: "As staff extract the DNA of thousands of participants, it is important to remember that each one is an individual living with this deeply disabling disease."
Sharing | Take part | Thread
USA - Patient-Led Research Collaborative, in partnership with CMSS & funded by PCORI, has developed new scorecards to evaluate "how effective a patient group and research partner collaboration will be at conducting truly patient-led research." Three webinars are planned to explain how to use these scorecards.
Scorecards (PDF) | Thread
HealthRising Blog - The Long COVID Clinical Trials: Big Drugs, Big Studies… and More. Cort Johnson gives his view on some current and planned research.
Website | Thread
.................
Research
Diseases
The Draft Report by the Institute for Quality and Efficiency in Healthcare Does Not Provide Any Evidence That Graded Exercise Therapy and Cognitive Behavioral Therapy Are Safe and Effective Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Vink & Vink-Niese
The authors analysed the draft report on ME/CFS by the German Institute for Quality and Efficiency in Healthcare (IQWiG) and conclude that “the studies used by the report do not provide any evidence that CBT and GET are safe and effective.”
Article | Thread
International Journal of Molecular Sciences
Altered Fatty Acid Oxidation in Lymphocyte Populations of ME/CFS - Maya, Hanson et al
Tests on a range of immune cell types from a small sample of patients and controls found some between group differences, leading the authors to conclude: "Our findings support the theory of a consistently altered bioenergetic state in ME/CFS immune cells, specific to certain immune cell types that rely on fatty acids more heavily than healthy control subjects." The research is explained in a 3:37 minute video.
Paper | Video | Thread
Journal of Translational Medicine
The persistent viral infections in the development and severity of ME/CFS - Rasa-Dzelzkaleja et al
200 patients and 150 controls in this study of human herpesviruses and parovirus. The abstract concludes: "Significantly more persistent HHV-6A/B, HHV-7, and B19V infection/co-infection in an active phase with a higher viral load and elevated levels of pro- and anti-inflammatory cytokines among patients with ME/CFS than healthy individuals indicate the importance of these infections/co-infections in ME/CFS development. The presence of these infections/co-infections influences the ME/CFS clinical course severity."
Paper | Thread
Complementary Medicine Research
Effects of Yijinjing Qigongin Alleviating Fatigue, Sleep Quality and Health Status on Patients with Chronic Fatigue Syndrome: A Randomized, Controlled, and Parallel Group Clinical Study - Xie et al
In this Chinese study 40 patients did either "a kind of health care practice from ancient China, consists of 12 movements" or CBT for 12 weeks. Based on questionnaires, the authors conclude that Yijinjing is more effective than CBT.
Paper | Thread
Long COVID research
Journal of Pathology
Persistent SARS-CoV-2 infection in patients seemingly recovered from COVID-19 — Bussani et al
Post-mortem study. "Together, these findings indicate that SARS-CoV-2 infection can persist significantly longer than suggested by standard PCR-negative tests, with specific infection of specific cell types in the lung."
Article | Thread
Viruses
The Post-Acute Phase of SARS-CoV-2 Infection in Two Macaque Species Is Associated with Signs of Ongoing Virus Replication and Pathology in Pulmonary and Extrapulmonary Tissues — Böszörmény et al
"Our data indicate widespread tissue dissemination of SARS-CoV-2 in individual monkeys and provide evidence for continuing virus replication in lungs and surrounding lymph nodes after alleged convalescence of infection. This finding is intriguing as it has been hypothesized that persistent infection contributes to long COVID-19 in humans."
Article | Thread
European Journal of Physical and Rehabilitation Medicine
Fatigue, post-exertional malaise and orthostatic intolerance: a map of Cochrane evidence relevant to rehabilitation for people with post COVID-19 condition - Arienti et al.
The authors synthesized Cochrane evidence relevant to rehabilitation for fatigue, post-exertional malaise, and orthostatic intolerance due to Post-Covid Condition. The overall quality of evidence was low to very low and the authors did not find reviews that specifically addressed post-exertional malaise or orthostatic intolerance.
Article | Thread
.................
Coming Events
Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig
Sunday, January 22, 2023, 4 pm EST / 1 pm PST
Event is free and will be recorded for later viewing.
Announcement | Thread
.................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
USA - The CDC has published an update for their "Systematic Review of the Evidence for Clinical Management of ME/CFS" including responses to public comments.
Website | Thread
Canada - The latest Canadian Medical Association Journal has several short articles about Long Covid. One of them, Treating common and potentially modifiable symptoms of post-COVID-19 condition (long COVID) in adults, includes: "Fatigue and postexertional malaise associated with long COVID should be treated with titrated structured activity and energy conservation strategies".
Journal | Thread
UK ME Association APPG Report: Inform Your MP About The Key Issues Relating To ME/CFS!
"Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report – Rethinking ME – and this highlighted vital recommendations to help people with ME receive good quality health and social care." The MEA encourages members to spread the word about the report with their MP and others.
Article | Thread
UK Parliament has published a Research Briefing paper headed 'Invisible Disabilities in Education and Employment'. The Chronic Illness Inclusion Project describes the publication as a 'landmark moment'. "The briefing highlighted that lack of understanding and stigma from others creates consistent barriers to people with invisible disabilities."
Document | Comment | Thread
Japan - The Japan ME Association has joined the World ME Alliance.
Announcement | Thread
The Unwritten Kara Jane died of M.E. When will we take post-viral illness seriously?
An honest and hard hitting text by Laura Elliot on the recent passing of musician and severe ME sufferer Kara Jane. "Watching our community lose people to this illness time and time again never gets easier. But what makes it far worse, is that governments and medical professionals aren’t paying attention."
Article l Thread
Media coverage of the paper "Long COVID: major findings, mechanisms and recommendations" by Hannah E. Davis et al (see last week's news brief):
The Sydney Morning Herald 'We're all vulnerable': One in 10 people will end up with long COVID, new study says
Comments from Australian experts as Professor Stephen Duckett who says it's "vital that the upcoming Australian Centre of Disease Control has a major focus on chronic conditions stemming from infection, such as long COVID and ME/CFS".
Article l Thread
New Zealand RNZ article 'Risk of debilitating illness from long Covid could grow - epidemiologist Michael Baker'.
"The number of reinfections is important because studies have shown the more times a person is infected, the greater chance they have of developing ongoing symptoms. "Any acute infection that results in a long-term disability is very serious from a social, economic and health perspective," said Baker."
Article | Thread
Science Magazine Positive book review of Ryan Prior's "The Long Haul". The reviewer mentions the connections Prior is making between Long Covid and other post viral illnesses such as ME.
Thread with review
The Washington Post For long covid fatigue, a strategy called 'pacing' helps, but at a cost
A thorough article about managing long Covid with pacing. Includes information about ME and the debate on pacing versus graded exercise therapy as strategies. Jamie Seltzer from #MEAction and Todd Davenport provide good information and advice. Peter White is also interviewed and says he stands by the results from the PACE trial. Whitney Dafoe says ME sufferers should think of pacing as a way of life: "Pacing is how you survive".
Article l Thread
WebMD Can 'Radical Rest' Help With Long COVID Symptoms?
Article about pacing and research into pathophysiological findings in Long Covid. David Putrino says rest and pacing are "currently the best defense we have against uncontrolled disease progression". He continues: "The more we look objectively, the more we see physiological changes that are associated with long COVID. There is a clear organic pathobiology that is causing the fatigue and post-exertional malaise". Article also mentions research by David Systrom and Peter Novak.
Article l Thread
................
Useful resources
Healthcare
What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults - Kingdon et al
This paper, written by 4 members of the guideline committee and previously seen as a preprint, has now been published. It provides a clear summary of key points from the 2021 NICE guideline as a useful guide for clinicians.
Article | Thread
................
Research news
UK DecodeME More UK participants are needed for this research. The website has ways to spread the word, including one click sharing to Twitter, Facebook and Whatsapp, suggested messages and a poster, flyer, information sheet and printable leaflet. Some of the team described a visit this week to the National Biosample Centre: "As staff extract the DNA of thousands of participants, it is important to remember that each one is an individual living with this deeply disabling disease."
Sharing | Take part | Thread
USA - Patient-Led Research Collaborative, in partnership with CMSS & funded by PCORI, has developed new scorecards to evaluate "how effective a patient group and research partner collaboration will be at conducting truly patient-led research." Three webinars are planned to explain how to use these scorecards.
Scorecards (PDF) | Thread
HealthRising Blog - The Long COVID Clinical Trials: Big Drugs, Big Studies… and More. Cort Johnson gives his view on some current and planned research.
Website | Thread
.................
Research
Diseases
The Draft Report by the Institute for Quality and Efficiency in Healthcare Does Not Provide Any Evidence That Graded Exercise Therapy and Cognitive Behavioral Therapy Are Safe and Effective Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Vink & Vink-Niese
The authors analysed the draft report on ME/CFS by the German Institute for Quality and Efficiency in Healthcare (IQWiG) and conclude that “the studies used by the report do not provide any evidence that CBT and GET are safe and effective.”
Article | Thread
International Journal of Molecular Sciences
Altered Fatty Acid Oxidation in Lymphocyte Populations of ME/CFS - Maya, Hanson et al
Tests on a range of immune cell types from a small sample of patients and controls found some between group differences, leading the authors to conclude: "Our findings support the theory of a consistently altered bioenergetic state in ME/CFS immune cells, specific to certain immune cell types that rely on fatty acids more heavily than healthy control subjects." The research is explained in a 3:37 minute video.
Paper | Video | Thread
Journal of Translational Medicine
The persistent viral infections in the development and severity of ME/CFS - Rasa-Dzelzkaleja et al
200 patients and 150 controls in this study of human herpesviruses and parovirus. The abstract concludes: "Significantly more persistent HHV-6A/B, HHV-7, and B19V infection/co-infection in an active phase with a higher viral load and elevated levels of pro- and anti-inflammatory cytokines among patients with ME/CFS than healthy individuals indicate the importance of these infections/co-infections in ME/CFS development. The presence of these infections/co-infections influences the ME/CFS clinical course severity."
Paper | Thread
Complementary Medicine Research
Effects of Yijinjing Qigongin Alleviating Fatigue, Sleep Quality and Health Status on Patients with Chronic Fatigue Syndrome: A Randomized, Controlled, and Parallel Group Clinical Study - Xie et al
In this Chinese study 40 patients did either "a kind of health care practice from ancient China, consists of 12 movements" or CBT for 12 weeks. Based on questionnaires, the authors conclude that Yijinjing is more effective than CBT.
Paper | Thread
Long COVID research
Journal of Pathology
Persistent SARS-CoV-2 infection in patients seemingly recovered from COVID-19 — Bussani et al
Post-mortem study. "Together, these findings indicate that SARS-CoV-2 infection can persist significantly longer than suggested by standard PCR-negative tests, with specific infection of specific cell types in the lung."
Article | Thread
Viruses
The Post-Acute Phase of SARS-CoV-2 Infection in Two Macaque Species Is Associated with Signs of Ongoing Virus Replication and Pathology in Pulmonary and Extrapulmonary Tissues — Böszörmény et al
"Our data indicate widespread tissue dissemination of SARS-CoV-2 in individual monkeys and provide evidence for continuing virus replication in lungs and surrounding lymph nodes after alleged convalescence of infection. This finding is intriguing as it has been hypothesized that persistent infection contributes to long COVID-19 in humans."
Article | Thread
European Journal of Physical and Rehabilitation Medicine
Fatigue, post-exertional malaise and orthostatic intolerance: a map of Cochrane evidence relevant to rehabilitation for people with post COVID-19 condition - Arienti et al.
The authors synthesized Cochrane evidence relevant to rehabilitation for fatigue, post-exertional malaise, and orthostatic intolerance due to Post-Covid Condition. The overall quality of evidence was low to very low and the authors did not find reviews that specifically addressed post-exertional malaise or orthostatic intolerance.
Article | Thread
.................
Coming Events
Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig
Sunday, January 22, 2023, 4 pm EST / 1 pm PST
Event is free and will be recorded for later viewing.
Announcement | Thread
.................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
Week beginning 23rd January 2023
News, articles and advocacy
.Coda When the doctor doesn't listen
Feature article by David Tuller on how patients with unexplained symptoms have been ignored and that Long Covid may represent a change.
Tuller tells the heartbreaking story of Maeve Boothby O´Neill, who died from severe ME at age 27 after a long and hard battle to get medical care. Maeve's mother hopes the coming inquest of her death will demonstrate "how socially, morally and ethically unjust it is to deny a biomedical cause to ME" and that Maeve "died by the incomprehension and disbelief of an acute hospital".
Article l Thread
Trial by Error by David Tuller Double Talk on Mind-Body "Dualism"?
A critical look at a recent editorial in the Journal of Psychosomatic Research titled "Why the hypothesis of psychological mechanisms in long COVID is worth considering". Tuller asks whether the editorial falls into its own trap and promotes a dualistic approach "while presenting itself as inveighing against it".
Article l Thread
Public Herald The New Republic Has Long Covid All Wrong
An open letter with a thorough rebuttal of an article in the New Republic by columnist Natalie Shure on Long Covid which had many inaccuracies. The letter is signed by over 200 journalists, researchers, physicians as well as patients with Long Covid, ME/CFS and other infection-associated illnesses.
In a response posted on the blogging site Medium, Shure attempts to justify her original article.
Open letter l Post linking Shure's response | Thread
Texas Standard Long COVID can lead to chronic fatigue syndrome. Doctors are working to help patients manage
Informative interview with disability journalist Amanda Morris on Long Covid and ME which also touches upon pacing as a management strategy.
Interview l Thread
..................
Research news
Open Medicine Foundation has posted a new video: Itaconate Shunt Hypothesis, Part 2. Robert Phair and Janet Dafoe discuss the mechanisms of the itaconate shunt and its potential implications for the field of ME/CFS research.
Video | Thread
DecodeME update - a reminder to those in the UK who signed up to receive updates: if you want to take part in the study you need to return to the website and fill in the questionnaire which has about 30 questions. You should then receive and email to tell you whether you will be sent a spit kit for the genetic part of the study.
Facebook update |Take part | Thread
Science Friday Here's What We Know About Long COVID, Three Years Later
Interview with Hannah Davis and Dr. Bhupesh Prusty on the recent Nature review on Long Covid and on research into Long Covid and ME/CFS.
Interview l Thread
..................
Research
Review article
Journal of Pain Research
The Link Between Empty Sella Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome: The Role of Increased Cerebrospinal Fluid Pressure - Hulens et al.
A narrative review that looks for evidence of similarities between these conditions, and hypotheses links between HPA axis hormonal changes and cerebrospinal fluid pressure dysregulation.
Article | Thread
Psychosomatic research
British Journal of Health Psychology
The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability, and validity across several long-term conditions - Picariello et al.
The authors report the psychometric properties of the CBRQ in patients with CFS, multiple sclerosis, haemodialysis, inflammatory bowel disease, and chronic dizziness.
Article | Thread
Contemporary Clinical Trials Communications
Internet-delivered treatment for patients suffering from severe functional somatic disorders: Protocol for a randomized controlled trial - Pedersen et al.
This is a protocol for a Danish randomized trial that will test an internet-delivered treatment program for severe functional somatic disorders.
Article | Thread
Journal of Psychosomatic Research
Explanations for functional somatic symptoms across European treatment settings: A mixed methods study - Saunders et al.
The authors conducted interviews with 186 healthcare professionals from 16 European countries on how they treated patients with functional somatic syndromes (FSS). Five main explanatory models for FSS were used across treatment settings: The ‘Multisystem Stress’ approach, ‘Sensitized Alarm’, ‘Malfunctioning software’, Embodied Experience’, and the person-centered ‘Symptoms’ approach.
Article | Thread
Long Covid research
Journal of Autoimmunity
Pre-existing conditions associated with post-acute sequelae of COVID-19 — Jacobs et al
"After adjustment for severity of acute SARS-CoV-2 infection and depression/anxiety, seasonal allergies (OR = 1.48; 95% CI 1.15–1.91) and autoimmune disease (OR = 3.78; 95% CI - 1.31-10.91) remained significantly associated with risk for PASC."
Article | Thread
Journal of Neurology
Brain positron emission tomography (PET) and cognitive abnormalities one year after COVID-19 — Ferrucci et al
"... our study is the first to assess cognitive functions, brain metabolic activity and in a patient also amyloid PET one year after COVID-19, demonstrating that cerebral effects of COVID-19 can largely outlast the acute phase of the disease and even be followed by amyloid deposition."
Article | Thread
...................
Resources for clinicians
Study PRN The free CPD (continuing professional development) module for clinicians on ME/CFS by Dr Nina Muirhead has been updated. It includes 10 brief case descriptions with questions, and takes about an hour to complete. It includes information on diagnosis, symptoms and management with quotes from the 2021 NICE guidleline.
Module | Thread
The CDC has announced a series of new CME courses, Expert Guidance on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). "The activities in this series will help clinicians recognize the ME/CFS symptom spectrum, treat those patients, and use evidence-based approaches to help alleviate or eliminate symptoms or comorbid conditions."
Website | Thread
................
Coming Events
How to Improve Your Score/Q&A Session
February 2, 3 pm Eastern Time / noon Pacific Time
Final webinar by Patient-Led Research Collaborative about their new scorecards to measure patient involvement in research.
Register | Thread
...................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
News, articles and advocacy
.Coda When the doctor doesn't listen
Feature article by David Tuller on how patients with unexplained symptoms have been ignored and that Long Covid may represent a change.
Tuller tells the heartbreaking story of Maeve Boothby O´Neill, who died from severe ME at age 27 after a long and hard battle to get medical care. Maeve's mother hopes the coming inquest of her death will demonstrate "how socially, morally and ethically unjust it is to deny a biomedical cause to ME" and that Maeve "died by the incomprehension and disbelief of an acute hospital".
Article l Thread
Trial by Error by David Tuller Double Talk on Mind-Body "Dualism"?
A critical look at a recent editorial in the Journal of Psychosomatic Research titled "Why the hypothesis of psychological mechanisms in long COVID is worth considering". Tuller asks whether the editorial falls into its own trap and promotes a dualistic approach "while presenting itself as inveighing against it".
Article l Thread
Public Herald The New Republic Has Long Covid All Wrong
An open letter with a thorough rebuttal of an article in the New Republic by columnist Natalie Shure on Long Covid which had many inaccuracies. The letter is signed by over 200 journalists, researchers, physicians as well as patients with Long Covid, ME/CFS and other infection-associated illnesses.
In a response posted on the blogging site Medium, Shure attempts to justify her original article.
Open letter l Post linking Shure's response | Thread
Texas Standard Long COVID can lead to chronic fatigue syndrome. Doctors are working to help patients manage
Informative interview with disability journalist Amanda Morris on Long Covid and ME which also touches upon pacing as a management strategy.
Interview l Thread
..................
Research news
Open Medicine Foundation has posted a new video: Itaconate Shunt Hypothesis, Part 2. Robert Phair and Janet Dafoe discuss the mechanisms of the itaconate shunt and its potential implications for the field of ME/CFS research.
Video | Thread
DecodeME update - a reminder to those in the UK who signed up to receive updates: if you want to take part in the study you need to return to the website and fill in the questionnaire which has about 30 questions. You should then receive and email to tell you whether you will be sent a spit kit for the genetic part of the study.
Facebook update |Take part | Thread
Science Friday Here's What We Know About Long COVID, Three Years Later
Interview with Hannah Davis and Dr. Bhupesh Prusty on the recent Nature review on Long Covid and on research into Long Covid and ME/CFS.
Interview l Thread
..................
Research
Review article
Journal of Pain Research
The Link Between Empty Sella Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome: The Role of Increased Cerebrospinal Fluid Pressure - Hulens et al.
A narrative review that looks for evidence of similarities between these conditions, and hypotheses links between HPA axis hormonal changes and cerebrospinal fluid pressure dysregulation.
Article | Thread
Psychosomatic research
British Journal of Health Psychology
The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability, and validity across several long-term conditions - Picariello et al.
The authors report the psychometric properties of the CBRQ in patients with CFS, multiple sclerosis, haemodialysis, inflammatory bowel disease, and chronic dizziness.
Article | Thread
Contemporary Clinical Trials Communications
Internet-delivered treatment for patients suffering from severe functional somatic disorders: Protocol for a randomized controlled trial - Pedersen et al.
This is a protocol for a Danish randomized trial that will test an internet-delivered treatment program for severe functional somatic disorders.
Article | Thread
Journal of Psychosomatic Research
Explanations for functional somatic symptoms across European treatment settings: A mixed methods study - Saunders et al.
The authors conducted interviews with 186 healthcare professionals from 16 European countries on how they treated patients with functional somatic syndromes (FSS). Five main explanatory models for FSS were used across treatment settings: The ‘Multisystem Stress’ approach, ‘Sensitized Alarm’, ‘Malfunctioning software’, Embodied Experience’, and the person-centered ‘Symptoms’ approach.
Article | Thread
Long Covid research
Journal of Autoimmunity
Pre-existing conditions associated with post-acute sequelae of COVID-19 — Jacobs et al
"After adjustment for severity of acute SARS-CoV-2 infection and depression/anxiety, seasonal allergies (OR = 1.48; 95% CI 1.15–1.91) and autoimmune disease (OR = 3.78; 95% CI - 1.31-10.91) remained significantly associated with risk for PASC."
Article | Thread
Journal of Neurology
Brain positron emission tomography (PET) and cognitive abnormalities one year after COVID-19 — Ferrucci et al
"... our study is the first to assess cognitive functions, brain metabolic activity and in a patient also amyloid PET one year after COVID-19, demonstrating that cerebral effects of COVID-19 can largely outlast the acute phase of the disease and even be followed by amyloid deposition."
Article | Thread
...................
Resources for clinicians
Study PRN The free CPD (continuing professional development) module for clinicians on ME/CFS by Dr Nina Muirhead has been updated. It includes 10 brief case descriptions with questions, and takes about an hour to complete. It includes information on diagnosis, symptoms and management with quotes from the 2021 NICE guidleline.
Module | Thread
The CDC has announced a series of new CME courses, Expert Guidance on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). "The activities in this series will help clinicians recognize the ME/CFS symptom spectrum, treat those patients, and use evidence-based approaches to help alleviate or eliminate symptoms or comorbid conditions."
Website | Thread
................
Coming Events
How to Improve Your Score/Q&A Session
February 2, 3 pm Eastern Time / noon Pacific Time
Final webinar by Patient-Led Research Collaborative about their new scorecards to measure patient involvement in research.
Register | Thread
...................
S4ME social media: Facebook, Twitter, Mastodon and YouTube
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For next week's news go to this thread:
News in Brief - February 2023
News in Brief - February 2023