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News in Brief - November 2022
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Week beginning 31st October 2022
News, articles and advocacy
New Zealand The petition to the government asking that ME/CFS be classed as a disability has been referred to the Health Committee and ANZMES' submission documents can be downloaded from the parliament website.
Submission here Thread here
Australia A webinar on "ME/CFS - diagnosing and managing in general practice" by the North Western Melbourne Primary Health Network is available on YouTube. Duration 1:19 hours.
Video here Thread here
Solve M.E. - COVID-19 as a Trigger for ME/CFS: Severity Biomarkers and Underlying Mechanisms
A recording of this Oct. 24 webinar is now available online (about one hour).
Video here Thread here
#MEAction wrote an article about cultivating relationships with journalists (which includes education about ME) and how that has led to some high profile press coverage for ME.
Article here Thread here
Norway An article in Morgenbladet where BPS researcher Reme claimed it was necessary with guards for a seminar on ME because patients allegedly are out to get researchers (see last week's news brief) was followed up with an interview with Anne Kielland who is researching ME patient's meeting with the health care services. Kielland says it's time to put the foot down when people don't take this patient group seriously. She describes the patient group as being cowed and grateful even for very little. The articles have in addition been followed up with more opinion pieces. One where the leader of the organisation Recovery Norge disagrees with it being characterised as a movement, which received a response from Saugstad, Steinkopf and Rønning explaining how the organisation is hindering ME patients in receiving help.
Thread with summaries and links here
Trial by Error by David Tuller Norwegian CBT/GET Ideologues Take Aim at Critics Who Reject Their Views
A critical response from Tuller to an opinion piece by Professors Reme and Wyller and research director at the Norwegian Institute for public health, Flottorp, where they argued for GET/CBT as ME treatments (see last week's news brief).
Article here Thread here
Yale School of Medicine Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS?
The article tells the story of advocate and ME sufferer Rivka Solomon who says the lack of understanding of the history of post-infectious chronic illness among the research community is still evident. MIT researcher Beth Pollack describes ME/CFS as a "neuroimmune, neuroinflammatory illness that affects numerous organ systems throughout the body, involving dysfunction of the vascular, autonomic, neurological, mitochondrial, metabolic, connective tissues, endocrine, and immune systems" and says "having adequate funding to study these illnesses would have helped us be better prepared for the pandemic and long COVID". Professor Iwasaki says: "The pandemic has opened the world's eye to the fact that many chronic illnesses have been largely ignored, dismissed, and ridiculed".
Article here Thread here
The Sydney Morning Herald We failed Australians with chronic fatigue. Will we do the same with long COVID?
The article includes an interview with researcher Chris Armstrong, director of the Melbourne ME/CFS Collaboration, who says that ME/CFS is effectively a more severe form of long Covid and that with long Covid we're getting the high-quality biological studies long missing from ME/CFS. Anne Wilson, CEO of Emerge Australia says "fund research that builds on existing work on ME/CFS. And make long COVID a national health priority".
Article here Thread here
Boston Globe Long COVID affects millions. What is being done about it?
Good opinion piece from Katie Bach and David Cutler on Long Covid and how the neglect of ME/CFS has made the situation more challenging. They have four suggestions, among others to create an NIH Institute dedicated to long Covid and other infection-associated chronic illness.
Opinion piece here Thread here
The Guardian John is disabled, be he can't access his pension. Why? Long Covid isn't on the list
Opinion piece by union rep Lydia Richards on the very difficult situation Long Covid sufferers are in, as the diagnosis is not grounds for retirement through ill health in UK. She also urges employers to be more flexible with those Long Covid sufferers who are still able to work.
Opinion piece here Thread here
Intelligencer Has Long COVID Always Existed? by Jeff Wise
A long article about some of the history of ME. The article is unfortunately in line with the psychosomatic approach to the disease, and suggests among other things that recent developments such as CBT/GET no longer being recommended as treatment approaches isn't based on scientific grounds. David Tuller, whose work on PACE is misrepresented in the article, has explained to the author on Twitter.
Article here Tuller on Twitter here Thread here
UK Office of National Statistics Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK
Monthly estimates for October 2022 include: 'Long COVID symptoms adversely affected the day-to-day activities of 1.6 million people (73% of those with self-reported long COVID), with 333,000 (16%) reporting that their ability to undertake their day-to-day activities had been "limited a lot".'
ONS website here Thread here
................
Useful resources
Preprints
"What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults" by Kingdon, Lowe, Shepherd and Nacul.
This article summarises the key points in the new guideline with explanations of the roles of GP's and specialist teams and the importance of ongoing review and support.
Article here Thread here
.................
Coming Events
Solve M.E. has announced a Solve Spotlight webinar series:
* November 14: Ryan Prior will talk about his new book The Long Haul
* November 22: Fiona Lowenstein (editor) and Dona Kim Murphey (author of one of the chapters) will discuss the new book The Long Covid Survival Guide
* January 23: Meghan O'Rourke will discuss her book The Invisible Kingdom
Event info here Thread here
Workwell Foundation & Norwegian ME Association
"Heart Rate Biofeedback for Myalgic Encephalomyelitis: From Physiology to Practice"
November 16, 9 am Pacific Time
At this webinar Todd Davenport and Mark Van Ness will present "current information regarding the physiology of PEM, activity pacing, and how to use data from commercially available wearable sensors."
Register here Thread here
................
Research news
UK DecodeME "People diagnosed with ME invited to take part in world’s largest genetic study of the disease" - article published on the UK NIHR (National Institute for Health and Care Research) website. 'DecodeME will analyse DNA in the saliva of 20,000 donated samples from people with ME/CFS to explore whether the disease is partly genetic. The study includes a ‘post-COVID’ arm, analysing the DNA of a further 5,000 people who have been diagnosed with ME after COVID-19 infection.' More participants are needed.
Article here Take part here Thread here
Tempi Foundation
The Tempi Foundation announced Prof. Akiko Iwasaki as the recipient of their 2022 "Johadamis MECFS Research Grant." In collaboration with Polybio, Iwasaki will screen the blood and cerebrospinal fluid of ME/CFS patients for signs of infection.
Announcement here Thread here
ClinicalTrials.gov
“Rehabilitation Therapy for Post COVID 19 Chronic Fatigue Syndrome”
This trial registration by Samar Hosny, Cairo University plans to test a combined rehabilitation therapy in the form of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) to treat patients with post COVID19 chronic fatigue syndrome. Patients will be selected using the Oxford diagnostic criteria for CFS.
Trial registration here Thread here
................
Research
Cornell University - PhD Thesis
"Investigating the Enterovirus Theory of Disease Aetiology in ME/CFS" by Adam O'Neal
From the abstract: 'A review of prior ME/CFS investigations in ME/CFS revealed a strong prevalence of chronic EV infections across ME/CFS cohorts.' However, in O'Neal's research, 'EVs were undetected in both ME/CFS and healthy control samples despite all approaches that were pursued.'
Abstract here Thread here
The Lancet
"High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial" by K. Hansen et al
In this Danish double blinded crossover trial with 121 Long COVID patients, no difference was found in number or severity of symptoms between groups, so the treatment was ineffective.
Paper here Thread here
Nature Scientific Reports
"Extended coagulation profile of children with Long Covid: a prospective study" by Di Gennaro et al
The coagulation profile was generally within normal range, but those with more severe Long Covid 'had abnormal D-dimer levels compared to other children that fully recovered from an acute SARS-CoV-2 infection'.
Paper here Thread here
Journal of Occupational Rehabilitation
“What is Safe Long COVID Rehabilitation?” DeMars et al.
In September 2022, the patient-led association Long COVID Physio organized the two-day online Long COVID Physio International Forum. This paper represents the findings of the discussion.
Article here Thread here
Massey University
"Support Experiences of Children and Youth with ME/CFS and Epilepsy in New Zealand Schools: A Parental Perspective” by Kirstin Louise Bierre
This Master’s thesis at Massey University, New Zealand explored the experiences of 20 parents of children with ME/CFS and the impact the condition has on schooling.
Thesis here Thread here
................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
New Zealand The petition to the government asking that ME/CFS be classed as a disability has been referred to the Health Committee and ANZMES' submission documents can be downloaded from the parliament website.
Submission here Thread here
Australia A webinar on "ME/CFS - diagnosing and managing in general practice" by the North Western Melbourne Primary Health Network is available on YouTube. Duration 1:19 hours.
Video here Thread here
Solve M.E. - COVID-19 as a Trigger for ME/CFS: Severity Biomarkers and Underlying Mechanisms
A recording of this Oct. 24 webinar is now available online (about one hour).
Video here Thread here
#MEAction wrote an article about cultivating relationships with journalists (which includes education about ME) and how that has led to some high profile press coverage for ME.
Article here Thread here
Norway An article in Morgenbladet where BPS researcher Reme claimed it was necessary with guards for a seminar on ME because patients allegedly are out to get researchers (see last week's news brief) was followed up with an interview with Anne Kielland who is researching ME patient's meeting with the health care services. Kielland says it's time to put the foot down when people don't take this patient group seriously. She describes the patient group as being cowed and grateful even for very little. The articles have in addition been followed up with more opinion pieces. One where the leader of the organisation Recovery Norge disagrees with it being characterised as a movement, which received a response from Saugstad, Steinkopf and Rønning explaining how the organisation is hindering ME patients in receiving help.
Thread with summaries and links here
Trial by Error by David Tuller Norwegian CBT/GET Ideologues Take Aim at Critics Who Reject Their Views
A critical response from Tuller to an opinion piece by Professors Reme and Wyller and research director at the Norwegian Institute for public health, Flottorp, where they argued for GET/CBT as ME treatments (see last week's news brief).
Article here Thread here
Yale School of Medicine Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS?
The article tells the story of advocate and ME sufferer Rivka Solomon who says the lack of understanding of the history of post-infectious chronic illness among the research community is still evident. MIT researcher Beth Pollack describes ME/CFS as a "neuroimmune, neuroinflammatory illness that affects numerous organ systems throughout the body, involving dysfunction of the vascular, autonomic, neurological, mitochondrial, metabolic, connective tissues, endocrine, and immune systems" and says "having adequate funding to study these illnesses would have helped us be better prepared for the pandemic and long COVID". Professor Iwasaki says: "The pandemic has opened the world's eye to the fact that many chronic illnesses have been largely ignored, dismissed, and ridiculed".
Article here Thread here
The Sydney Morning Herald We failed Australians with chronic fatigue. Will we do the same with long COVID?
The article includes an interview with researcher Chris Armstrong, director of the Melbourne ME/CFS Collaboration, who says that ME/CFS is effectively a more severe form of long Covid and that with long Covid we're getting the high-quality biological studies long missing from ME/CFS. Anne Wilson, CEO of Emerge Australia says "fund research that builds on existing work on ME/CFS. And make long COVID a national health priority".
Article here Thread here
Boston Globe Long COVID affects millions. What is being done about it?
Good opinion piece from Katie Bach and David Cutler on Long Covid and how the neglect of ME/CFS has made the situation more challenging. They have four suggestions, among others to create an NIH Institute dedicated to long Covid and other infection-associated chronic illness.
Opinion piece here Thread here
The Guardian John is disabled, be he can't access his pension. Why? Long Covid isn't on the list
Opinion piece by union rep Lydia Richards on the very difficult situation Long Covid sufferers are in, as the diagnosis is not grounds for retirement through ill health in UK. She also urges employers to be more flexible with those Long Covid sufferers who are still able to work.
Opinion piece here Thread here
Intelligencer Has Long COVID Always Existed? by Jeff Wise
A long article about some of the history of ME. The article is unfortunately in line with the psychosomatic approach to the disease, and suggests among other things that recent developments such as CBT/GET no longer being recommended as treatment approaches isn't based on scientific grounds. David Tuller, whose work on PACE is misrepresented in the article, has explained to the author on Twitter.
Article here Tuller on Twitter here Thread here
UK Office of National Statistics Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK
Monthly estimates for October 2022 include: 'Long COVID symptoms adversely affected the day-to-day activities of 1.6 million people (73% of those with self-reported long COVID), with 333,000 (16%) reporting that their ability to undertake their day-to-day activities had been "limited a lot".'
ONS website here Thread here
................
Useful resources
Preprints
"What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults" by Kingdon, Lowe, Shepherd and Nacul.
This article summarises the key points in the new guideline with explanations of the roles of GP's and specialist teams and the importance of ongoing review and support.
Article here Thread here
.................
Coming Events
Solve M.E. has announced a Solve Spotlight webinar series:
* November 14: Ryan Prior will talk about his new book The Long Haul
* November 22: Fiona Lowenstein (editor) and Dona Kim Murphey (author of one of the chapters) will discuss the new book The Long Covid Survival Guide
* January 23: Meghan O'Rourke will discuss her book The Invisible Kingdom
Event info here Thread here
Workwell Foundation & Norwegian ME Association
"Heart Rate Biofeedback for Myalgic Encephalomyelitis: From Physiology to Practice"
November 16, 9 am Pacific Time
At this webinar Todd Davenport and Mark Van Ness will present "current information regarding the physiology of PEM, activity pacing, and how to use data from commercially available wearable sensors."
Register here Thread here
................
Research news
UK DecodeME "People diagnosed with ME invited to take part in world’s largest genetic study of the disease" - article published on the UK NIHR (National Institute for Health and Care Research) website. 'DecodeME will analyse DNA in the saliva of 20,000 donated samples from people with ME/CFS to explore whether the disease is partly genetic. The study includes a ‘post-COVID’ arm, analysing the DNA of a further 5,000 people who have been diagnosed with ME after COVID-19 infection.' More participants are needed.
Article here Take part here Thread here
Tempi Foundation
The Tempi Foundation announced Prof. Akiko Iwasaki as the recipient of their 2022 "Johadamis MECFS Research Grant." In collaboration with Polybio, Iwasaki will screen the blood and cerebrospinal fluid of ME/CFS patients for signs of infection.
Announcement here Thread here
ClinicalTrials.gov
“Rehabilitation Therapy for Post COVID 19 Chronic Fatigue Syndrome”
This trial registration by Samar Hosny, Cairo University plans to test a combined rehabilitation therapy in the form of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) to treat patients with post COVID19 chronic fatigue syndrome. Patients will be selected using the Oxford diagnostic criteria for CFS.
Trial registration here Thread here
................
Research
Cornell University - PhD Thesis
"Investigating the Enterovirus Theory of Disease Aetiology in ME/CFS" by Adam O'Neal
From the abstract: 'A review of prior ME/CFS investigations in ME/CFS revealed a strong prevalence of chronic EV infections across ME/CFS cohorts.' However, in O'Neal's research, 'EVs were undetected in both ME/CFS and healthy control samples despite all approaches that were pursued.'
Abstract here Thread here
The Lancet
"High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial" by K. Hansen et al
In this Danish double blinded crossover trial with 121 Long COVID patients, no difference was found in number or severity of symptoms between groups, so the treatment was ineffective.
Paper here Thread here
Nature Scientific Reports
"Extended coagulation profile of children with Long Covid: a prospective study" by Di Gennaro et al
The coagulation profile was generally within normal range, but those with more severe Long Covid 'had abnormal D-dimer levels compared to other children that fully recovered from an acute SARS-CoV-2 infection'.
Paper here Thread here
Journal of Occupational Rehabilitation
“What is Safe Long COVID Rehabilitation?” DeMars et al.
In September 2022, the patient-led association Long COVID Physio organized the two-day online Long COVID Physio International Forum. This paper represents the findings of the discussion.
Article here Thread here
Massey University
"Support Experiences of Children and Youth with ME/CFS and Epilepsy in New Zealand Schools: A Parental Perspective” by Kirstin Louise Bierre
This Master’s thesis at Massey University, New Zealand explored the experiences of 20 parents of children with ME/CFS and the impact the condition has on schooling.
Thesis here Thread here
................
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 7th November 2022
News, articles and advocacy
New York Magazine - Intelligencer: 'Has Long Covid Always Existed' by Jeff Wise. Following the publication of this problematic article (see last week's news), there have been further attempts on Twitter by ME/CFS experts to explain to the author the factual inaccuracies in his article. These include doctors Todd Davenport, David Putrino and David Tuller. #MEAction have written to the author and editors to explain why the article is so wrong.
Thread here
Trial By Error by David Tuller "More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid"
Dr Tuller highlights problems with the Jeff Wise article, links to critical commentary by ME/CFS experts on Twitter and elsewhere, and explains why Jeff Wise's main source, Professor Michael Sharpe, is 'an unreliable narrator'.
Article here Thread here
Solve ME "Solve M.E. & Community Partners Denounce Misleading New York Magazine Article" by Lucinda Bateman, MD, Mady Hornig, MA, MD and Emily Taylor, MA.
Three experts whose comments were misrepresented in the article have written of their concern at this article that is so out of step with current research and collaboration with patients. They conclude: 'We have contacted Wise and NYM and have called for a retraction of the article. We will continue to further educate, advance the science, and advocate for these underserved and misrepresented people in our communities.'
Article here Thread here
.....
Germany
The deadline for submitting comments to the report on ME/CFS by the German Institute for Quality and Efficiency in Health Care (IQWiG) is 27 November. There are formal requirements attached to the submission of comments and these can be found here.
Thread here
Health Affairs The Sun Sneaks In: More Poems On Disability And Health
Four poems which were finalists in the 2022 Narrative Matters poetry contest on disability and health. Three of the poems are written by ME sufferers. One, by Veronica Ashenhurst, is a poem based on words from Anthony L. Komaroff's paper: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering is Multiplied".
Poems here Thread here
The Lerner Blog - Interview with Tessa Brunton, author of the comic collection called Notes from a Sickbed which was inspired by her experiences as an ME patient.
Interview here Thread here
The Sydney Morning Herald We're in the hydroxychloroquine era of long COVID
A warning against offering treatments for Long Covid that are not evidence based while we wait for clinical trials. Uses Graded Exercise Therapy as example and goes into why this has been such a problematic approach to ME.
Article here Thread here
CNBC Why Long Covid Could Cost The U.S. $3.7 Trillion
On the severity of Long Covid, it's high prevalence and the struggle to receive disability and medical help. Dr. Monica Verduzco-Gutierrez explains some clinical features as PEM and compares Long Covid with ME/CFS. Duration: 15 minutes.
Segment here Thread here
Norwegian ME Association Webinar
Leonard Jason's presentation on "Energy Envelope and Pacing," recorded on November 10, is now available. (about one hour including Q&A session)
Video here Thread here
UK Nursing Times
The Queen’s Nursing Institute (QNI) has published an updated resource for community nurses caring for patients with long Covid. However an article in Nursing Times is critical: “While this may not have been intentional, it feeds into the perception among some parts of the health service that long Covid is primarily psychosomatic rather than mental health issues being caused by having an illness that severely impacts everyday life,” said Dr Twycross, who has had long Covid since 2020.
Article here Guide here Thread here
..................
Coming Events
Online panel discussion
“Science Journalism & Disability” Online Pop-up Panel & Discussion on Tuesday, November 15. Panel members include include Maya Dusenbery, Sandhya Kambhampati, Fiona Lowenstein, Ryan Prior, Julie Rehmeyer, David Tuller and Elizabeth Weaver.
Register here Thread here
UK DecodeME webinar on Wednesday 16th November, 1 - 2pm (GMT) on Zoom and Facebook Live. 'Join Sonya Chowdhury and Chris Ponting to hear more about the study and some preliminary findings from the questionnaire stage. You will also learn more about how you can help us spread the word and reach more participants.'
Webinar here Join the study here Thread here
..................
Research news
Germany
Researchers at Charité Berlin have created a National Clinical Study Group to conduct clinical trials for the treatment ME/CFS and Long Covid. The project is funded by the Federal Ministry of Education and Research (BMBF) with an investment of approximately 10 million euros.
Article here Thread here
UK Brunel University Current research "Reactivation of herpesviruses in Chronic Fatigue Syndrome" A pilot study found 'that the concentration of DNA from HHV-6B was higher in saliva from people with ME/CFS, and that the concentration correlated with the severity of symptoms'. In order to study whether the reactivation is the cause or a downstream effect of reactivated virus, Dr Jaqueline Cliff is performing a larger prospective study.
Article here Thread here
Open Medicine Foundation (OMF) has published two articles as part of their "Triple Giving November" fund raising campaign. "Does ME/CFS Change Molecularly Throughout a Day?" talks about a study by Jonas Bergquist & Christopher Armstrong that uses high frequency blood testing.
Article here Thread here
"Does ME/CFS Have a Biomolecular Signature?" talks about research being done by Dr. Alain Moreau using Raman Spectroscopy technology.
Article here Thread here
Australia - University of the Sunshine Coast’s Thompson Institute is recruiting patients for a research study looking at how the brain controls blood flow. They're looking for "about 300 participants with ME/CFS, fibromyalgia and others who are sedentary ... but in good health."
Article here Thread here
..................
Research
Brain Connectivity
"Connectivity between Salience and Default Mode Networks and subcortical nodes distinguishes between two classes of ME/CFS" by Su et al
Using resting state and task fMRI, the abstract concludes: 'Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes.'
Article here (paywalled) Thread here
Autoimmunity Reviews
Review article "Autoimmune autonomic nervous system imbalance and conditions: Chronic fatigue syndrome, fibromyalgia, silicone breast implants, COVID and post-COVID syndrome, sick building syndrome, post-orthostatic tachycardia syndrome, autoimmune diseases and autoimmune/inflammatory syndrome induced by adjuvants" by Malkova et al.
Article here Thread here
Neuropsychiatric Disease and Treatment
“Mindfulness Meditation Interventions for Long COVID: Biobehavioral Gene Expression and Neuroimmune Functioning” by Porter & Jason
This review examines how meditation may influence the immune system of patients with ME/CFS and Long Covid.
Article here Thread here
Disability and Rehabilitation
“The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis” by Casson et al.
This review concludes that “activity pacing interventions” are effective in reducing fatigue and psychological distress in patients with CFS, particularly when people are encouraged to gradually increase activities.
Article here Thread here
Scandinavian Journal of Primary Health Care
“Discovering strengths in patients with medically unexplained symptoms – a focus group study with general practitioners” by Jøssang et al.
The authors conducted interviews with 17 GPs in Norway. Identifying strengths in patients with unexplained symptoms required a deliberate effort on the GPs’ behalf, and this seemed to be a result of a strong focus on biomedical disease and loss of function.
Article here Thread here
International Journal of Qualitative Studies on Health and Well-being
"The fragile process of Homecoming - Young women in recovery from severe ME/CFS" by Krabbe et al
This Norwegian team used interviews with several young women who had experienced improvement or recovery from ME/CFS to construct a narrative 'informed by a phenomenological theoretical perspective'. The abstract concludes: 'Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.'
Article here Thread here
Long Covid research
There many publications of research into Long Covid, too many to list individually in this brief news bulletin. A few are listed below.
Annals of Clinical and Translational Neurology
"Cognitive dysfunction 1 year after COVID-19: evidence from eye tracking" by Carbone et al.
Article here Thread here
medRxiv
"Transcutaneous Vagus Nerve Stimulation in the Treatment of Long Covid Chronic Fatigue Syndrome" by Natelson et al.
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
New York Magazine - Intelligencer: 'Has Long Covid Always Existed' by Jeff Wise. Following the publication of this problematic article (see last week's news), there have been further attempts on Twitter by ME/CFS experts to explain to the author the factual inaccuracies in his article. These include doctors Todd Davenport, David Putrino and David Tuller. #MEAction have written to the author and editors to explain why the article is so wrong.
Thread here
Trial By Error by David Tuller "More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid"
Dr Tuller highlights problems with the Jeff Wise article, links to critical commentary by ME/CFS experts on Twitter and elsewhere, and explains why Jeff Wise's main source, Professor Michael Sharpe, is 'an unreliable narrator'.
Article here Thread here
Solve ME "Solve M.E. & Community Partners Denounce Misleading New York Magazine Article" by Lucinda Bateman, MD, Mady Hornig, MA, MD and Emily Taylor, MA.
Three experts whose comments were misrepresented in the article have written of their concern at this article that is so out of step with current research and collaboration with patients. They conclude: 'We have contacted Wise and NYM and have called for a retraction of the article. We will continue to further educate, advance the science, and advocate for these underserved and misrepresented people in our communities.'
Article here Thread here
.....
Germany
The deadline for submitting comments to the report on ME/CFS by the German Institute for Quality and Efficiency in Health Care (IQWiG) is 27 November. There are formal requirements attached to the submission of comments and these can be found here.
Thread here
Health Affairs The Sun Sneaks In: More Poems On Disability And Health
Four poems which were finalists in the 2022 Narrative Matters poetry contest on disability and health. Three of the poems are written by ME sufferers. One, by Veronica Ashenhurst, is a poem based on words from Anthony L. Komaroff's paper: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering is Multiplied".
Poems here Thread here
The Lerner Blog - Interview with Tessa Brunton, author of the comic collection called Notes from a Sickbed which was inspired by her experiences as an ME patient.
Interview here Thread here
The Sydney Morning Herald We're in the hydroxychloroquine era of long COVID
A warning against offering treatments for Long Covid that are not evidence based while we wait for clinical trials. Uses Graded Exercise Therapy as example and goes into why this has been such a problematic approach to ME.
Article here Thread here
CNBC Why Long Covid Could Cost The U.S. $3.7 Trillion
On the severity of Long Covid, it's high prevalence and the struggle to receive disability and medical help. Dr. Monica Verduzco-Gutierrez explains some clinical features as PEM and compares Long Covid with ME/CFS. Duration: 15 minutes.
Segment here Thread here
Norwegian ME Association Webinar
Leonard Jason's presentation on "Energy Envelope and Pacing," recorded on November 10, is now available. (about one hour including Q&A session)
Video here Thread here
UK Nursing Times
The Queen’s Nursing Institute (QNI) has published an updated resource for community nurses caring for patients with long Covid. However an article in Nursing Times is critical: “While this may not have been intentional, it feeds into the perception among some parts of the health service that long Covid is primarily psychosomatic rather than mental health issues being caused by having an illness that severely impacts everyday life,” said Dr Twycross, who has had long Covid since 2020.
Article here Guide here Thread here
..................
Coming Events
Online panel discussion
“Science Journalism & Disability” Online Pop-up Panel & Discussion on Tuesday, November 15. Panel members include include Maya Dusenbery, Sandhya Kambhampati, Fiona Lowenstein, Ryan Prior, Julie Rehmeyer, David Tuller and Elizabeth Weaver.
Register here Thread here
UK DecodeME webinar on Wednesday 16th November, 1 - 2pm (GMT) on Zoom and Facebook Live. 'Join Sonya Chowdhury and Chris Ponting to hear more about the study and some preliminary findings from the questionnaire stage. You will also learn more about how you can help us spread the word and reach more participants.'
Webinar here Join the study here Thread here
..................
Research news
Germany
Researchers at Charité Berlin have created a National Clinical Study Group to conduct clinical trials for the treatment ME/CFS and Long Covid. The project is funded by the Federal Ministry of Education and Research (BMBF) with an investment of approximately 10 million euros.
Article here Thread here
UK Brunel University Current research "Reactivation of herpesviruses in Chronic Fatigue Syndrome" A pilot study found 'that the concentration of DNA from HHV-6B was higher in saliva from people with ME/CFS, and that the concentration correlated with the severity of symptoms'. In order to study whether the reactivation is the cause or a downstream effect of reactivated virus, Dr Jaqueline Cliff is performing a larger prospective study.
Article here Thread here
Open Medicine Foundation (OMF) has published two articles as part of their "Triple Giving November" fund raising campaign. "Does ME/CFS Change Molecularly Throughout a Day?" talks about a study by Jonas Bergquist & Christopher Armstrong that uses high frequency blood testing.
Article here Thread here
"Does ME/CFS Have a Biomolecular Signature?" talks about research being done by Dr. Alain Moreau using Raman Spectroscopy technology.
Article here Thread here
Australia - University of the Sunshine Coast’s Thompson Institute is recruiting patients for a research study looking at how the brain controls blood flow. They're looking for "about 300 participants with ME/CFS, fibromyalgia and others who are sedentary ... but in good health."
Article here Thread here
..................
Research
Brain Connectivity
"Connectivity between Salience and Default Mode Networks and subcortical nodes distinguishes between two classes of ME/CFS" by Su et al
Using resting state and task fMRI, the abstract concludes: 'Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes.'
Article here (paywalled) Thread here
Autoimmunity Reviews
Review article "Autoimmune autonomic nervous system imbalance and conditions: Chronic fatigue syndrome, fibromyalgia, silicone breast implants, COVID and post-COVID syndrome, sick building syndrome, post-orthostatic tachycardia syndrome, autoimmune diseases and autoimmune/inflammatory syndrome induced by adjuvants" by Malkova et al.
Article here Thread here
Neuropsychiatric Disease and Treatment
“Mindfulness Meditation Interventions for Long COVID: Biobehavioral Gene Expression and Neuroimmune Functioning” by Porter & Jason
This review examines how meditation may influence the immune system of patients with ME/CFS and Long Covid.
Article here Thread here
Disability and Rehabilitation
“The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis” by Casson et al.
This review concludes that “activity pacing interventions” are effective in reducing fatigue and psychological distress in patients with CFS, particularly when people are encouraged to gradually increase activities.
Article here Thread here
Scandinavian Journal of Primary Health Care
“Discovering strengths in patients with medically unexplained symptoms – a focus group study with general practitioners” by Jøssang et al.
The authors conducted interviews with 17 GPs in Norway. Identifying strengths in patients with unexplained symptoms required a deliberate effort on the GPs’ behalf, and this seemed to be a result of a strong focus on biomedical disease and loss of function.
Article here Thread here
International Journal of Qualitative Studies on Health and Well-being
"The fragile process of Homecoming - Young women in recovery from severe ME/CFS" by Krabbe et al
This Norwegian team used interviews with several young women who had experienced improvement or recovery from ME/CFS to construct a narrative 'informed by a phenomenological theoretical perspective'. The abstract concludes: 'Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.'
Article here Thread here
Long Covid research
There many publications of research into Long Covid, too many to list individually in this brief news bulletin. A few are listed below.
Annals of Clinical and Translational Neurology
"Cognitive dysfunction 1 year after COVID-19: evidence from eye tracking" by Carbone et al.
Article here Thread here
medRxiv
"Transcutaneous Vagus Nerve Stimulation in the Treatment of Long Covid Chronic Fatigue Syndrome" by Natelson et al.
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 14th November 2022
News, articles and advocacy
BMJ Blog - Evidence based nursing
"Long Covid – What can we learn about the cause and management from ME/CFS?" by Dr Charles Shepherd
Dr Shepherd highlights the numbers of people being disabled by Long Covid, and that many of these fulfil diagnostic criteria for ME/CFS. He expresses serious concern that clinics are providing innappropriate advice on activity management, or patients are offered psychological treatments or discharged.
The article links The MEA guide to Long Covid and ME/CFS
Article here Thread here
UK Parliament There was a House of Lords Debate on Long Covid. Baroness Scott raised important points about many people fitting ME diagnostic criteria and the importance of learning from ME experiences about energy management.
Hansard transcript here Thread here
Ryan Prior The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They are Changing Healthcare Forever
Book by CNN journalist Ryan Prior who suffers from both ME and Long Covid. The Los Angeles Times writes: "Prior distills nearly three years of pandemic research and interviews into a careful mosaic of patient narratives, recounting the story of long COVID alongside his own journey with ME. He also chronicles how activist-patients have led the struggle towards acknowledgment and research in the hope of finding treatment and eventually a cure".
Book here LA Times article here Thread here
USA - #MEAction The latest episode of the Chronically Complex podcast features an interview with Ryan Prior, author of the The Long Haul.
Podcast here Thread here
Medscape "ME/CFS and Long COVID: Q&A With the CDC's Dr Jennifer Cope"
This Q&A session covers basic questions about ME/CFS and Long Covid. No paywall, but access to Medscape may require registration (email/password).
Article here Thread here
David Tuller
Trial by Error More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid
A summary of critical reactions to a recent article claiming long Covid and ME/CFS are psychosomatic as well as a breakdown of the article's misrepresentation of Tuller's work on the PACE trial.
Article here Thread here
ME-debate in Aftenposten Tuller calls out nonsense in a recent opinion piece by Reme, Flottorp and Wyller where they defended GET/CBT as ME treatments. He receives a critical reply from Paul Garner who supports a psychological approach.
Tuller's opinion piece here Garner's opinion piece here Thread here
Sky News "How long COVID ruined my life, from crushing fatigue to brain fog"
Sky's correspondent Rowland Manthorpe tells of his struggle with long COVID, that treatment approaches GET and CBT have not been helpful, and of the need for more research into post viral illness. He has spoken to, among others, ME sufferer Dr. Charles Shepherd from the ME Association and says: "In the four decades between our collapses, almost no progress had been made in uncovering the nature of post-viral disease".
Article here Thread here
Sweden Botilda Guthenberg has a mother who is suffering from ME. In this opinion piece in the newspaper Länstidningen she calls for more knowledge and better health care for this patient group.
Opinion piece here Thread here
German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
Long Covid - where is the psychosomatics?” by Peter Henningsen
In this German article, Henningsen stresses the importance of a psychosomatic approach to Long Covid and the opposition against this approach coming from ME/CFS patients.
Article here Thread here
UK The Times "My long Covid: how I finally came back to life
Francesca Steele had given up hope. Then she tried an alternative health treatment". The author claims after trying many treatments that she was helped by the Lightning Process.
Article here and here Thread here
....................
In Memory
Professor Derek Pheby Dr Shepherd at the The ME Association reports the passing of their patron Prof Pheby who, as well as being a senior doctor in cancer epidemiology and public health, played leading roles relating to ME research in the UK and Europe. His son John tells of his poetry and support for children in Ukraine.
MEA obituary here Thread here (members only)
Marcus Sedgwick
The Guardian reports the death of children's author, Marcus Sedgwick, aged 54. In a Q&A published on the website Practical Pain Management in 2020, Sedgwick describes his experience of living with CFS. His book 'All in your head - What happens when your doctor doesn't believe you' was published recently.
Guardian obituary here Q&A here Thread here (members only)
....................
Research news
UK Decode ME
Enable magazine has a full page article about DecodeME with quotes from Andy Devereux-Cooke who explains the study and the importance of patient involvement in research.
The Mirror newspaper has published an article 'Largest genetic study of ME could finally provide answers around the condition'.
Enable magazine here Mirror article here Take part here Thread here
Canada Dr. Alain Moreau's talk on ME/CFS research, presented at the 2022 Canadian Ehlers Danlos Syndromes Conference ("A Lifetime of Learning") on November 5, is now available online.
Video here Thread here
.....................
Research
Journal of Clinical Medicine
“Differences in Symptoms among Black and White Patients with ME/CFS” by Jason & Torres.
The authors report that while there were significant differences between patients with ME/CFS and controls, few differences existed between patients who identified as Black or White.
Article here Thread here
Behaviour Research and Therapy
“Transdiagnostic therapy for persistent physical symptoms: A mediation analysis of the PRINCE secondary trial” James et al.
The authors report that reductions in catastrophising and symptom focusing were the strongest mediators of transdiagnostic cognitive behavioural therapy on the Work and Social Adjustment Scale at the end of treatment.
Article here Thread here
Scientific Reports
“Neuroticism and adverse life events are important determinants in functional somatic disorders: the DanFunD study” by Petersen et al.
This Danish study found positive associations between neuroticism, adverse life events and functional somatic disorders.
Article here Thread here
.....................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
BMJ Blog - Evidence based nursing
"Long Covid – What can we learn about the cause and management from ME/CFS?" by Dr Charles Shepherd
Dr Shepherd highlights the numbers of people being disabled by Long Covid, and that many of these fulfil diagnostic criteria for ME/CFS. He expresses serious concern that clinics are providing innappropriate advice on activity management, or patients are offered psychological treatments or discharged.
The article links The MEA guide to Long Covid and ME/CFS
Article here Thread here
UK Parliament There was a House of Lords Debate on Long Covid. Baroness Scott raised important points about many people fitting ME diagnostic criteria and the importance of learning from ME experiences about energy management.
Hansard transcript here Thread here
Ryan Prior The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They are Changing Healthcare Forever
Book by CNN journalist Ryan Prior who suffers from both ME and Long Covid. The Los Angeles Times writes: "Prior distills nearly three years of pandemic research and interviews into a careful mosaic of patient narratives, recounting the story of long COVID alongside his own journey with ME. He also chronicles how activist-patients have led the struggle towards acknowledgment and research in the hope of finding treatment and eventually a cure".
Book here LA Times article here Thread here
USA - #MEAction The latest episode of the Chronically Complex podcast features an interview with Ryan Prior, author of the The Long Haul.
Podcast here Thread here
Medscape "ME/CFS and Long COVID: Q&A With the CDC's Dr Jennifer Cope"
This Q&A session covers basic questions about ME/CFS and Long Covid. No paywall, but access to Medscape may require registration (email/password).
Article here Thread here
David Tuller
Trial by Error More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid
A summary of critical reactions to a recent article claiming long Covid and ME/CFS are psychosomatic as well as a breakdown of the article's misrepresentation of Tuller's work on the PACE trial.
Article here Thread here
ME-debate in Aftenposten Tuller calls out nonsense in a recent opinion piece by Reme, Flottorp and Wyller where they defended GET/CBT as ME treatments. He receives a critical reply from Paul Garner who supports a psychological approach.
Tuller's opinion piece here Garner's opinion piece here Thread here
Sky News "How long COVID ruined my life, from crushing fatigue to brain fog"
Sky's correspondent Rowland Manthorpe tells of his struggle with long COVID, that treatment approaches GET and CBT have not been helpful, and of the need for more research into post viral illness. He has spoken to, among others, ME sufferer Dr. Charles Shepherd from the ME Association and says: "In the four decades between our collapses, almost no progress had been made in uncovering the nature of post-viral disease".
Article here Thread here
Sweden Botilda Guthenberg has a mother who is suffering from ME. In this opinion piece in the newspaper Länstidningen she calls for more knowledge and better health care for this patient group.
Opinion piece here Thread here
German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
Long Covid - where is the psychosomatics?” by Peter Henningsen
In this German article, Henningsen stresses the importance of a psychosomatic approach to Long Covid and the opposition against this approach coming from ME/CFS patients.
Article here Thread here
UK The Times "My long Covid: how I finally came back to life
Francesca Steele had given up hope. Then she tried an alternative health treatment". The author claims after trying many treatments that she was helped by the Lightning Process.
Article here and here Thread here
....................
In Memory
Professor Derek Pheby Dr Shepherd at the The ME Association reports the passing of their patron Prof Pheby who, as well as being a senior doctor in cancer epidemiology and public health, played leading roles relating to ME research in the UK and Europe. His son John tells of his poetry and support for children in Ukraine.
MEA obituary here Thread here (members only)
Marcus Sedgwick
The Guardian reports the death of children's author, Marcus Sedgwick, aged 54. In a Q&A published on the website Practical Pain Management in 2020, Sedgwick describes his experience of living with CFS. His book 'All in your head - What happens when your doctor doesn't believe you' was published recently.
Guardian obituary here Q&A here Thread here (members only)
....................
Research news
UK Decode ME
Enable magazine has a full page article about DecodeME with quotes from Andy Devereux-Cooke who explains the study and the importance of patient involvement in research.
The Mirror newspaper has published an article 'Largest genetic study of ME could finally provide answers around the condition'.
Enable magazine here Mirror article here Take part here Thread here
Canada Dr. Alain Moreau's talk on ME/CFS research, presented at the 2022 Canadian Ehlers Danlos Syndromes Conference ("A Lifetime of Learning") on November 5, is now available online.
Video here Thread here
.....................
Research
Journal of Clinical Medicine
“Differences in Symptoms among Black and White Patients with ME/CFS” by Jason & Torres.
The authors report that while there were significant differences between patients with ME/CFS and controls, few differences existed between patients who identified as Black or White.
Article here Thread here
Behaviour Research and Therapy
“Transdiagnostic therapy for persistent physical symptoms: A mediation analysis of the PRINCE secondary trial” James et al.
The authors report that reductions in catastrophising and symptom focusing were the strongest mediators of transdiagnostic cognitive behavioural therapy on the Work and Social Adjustment Scale at the end of treatment.
Article here Thread here
Scientific Reports
“Neuroticism and adverse life events are important determinants in functional somatic disorders: the DanFunD study” by Petersen et al.
This Danish study found positive associations between neuroticism, adverse life events and functional somatic disorders.
Article here Thread here
.....................
S4ME social media: Facebook, Twitter and YouTube
Last edited:
Week beginning 21st November 2022
News, articles and advocacy
UK ME Association Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!
'In early October, the ME Association sent a major mailing to all GP surgeries. In total 8,121 packages were sent, and each included a covering letter and 5 items of literature that we hope will keep frontline healthcare services informed about recent developments.' Materials include MEA guides on the ME/CFS NICE guideline, and on Long Covid.
MEA article here Thread here
Norway Two positive propositions about ME got passed in the Parliament: The Government is asked to review regulations and practice to ensure that ME patients have a right to equal and appropriate treatment when applying for disability benefits and that they'll not be subjected to treatment requirements that are unavailable or refused in the public healthcare system. Patient advocate Sissel Sunde has written a thorough article with details leading up to the resolutions.
Sunde's article here Thread here
An article from NRK about 25 year old Aurora who suffers from severe ME and has been living in an institution for the elderly against her will for nine months. She wishes to receive care at home instead and is supported by local politicians who ask the municipality to do more for her.
Article here Thread here
Medscape has posted a new CME (Continuing Medical Education) course with the title, "Do Fatigue and Exercise Intolerance Post-COVID-19 Indicate a Chronic Disease?" Listed authors include Miriam E. Tucker and Charles P. Vega.
CME course here Thread here
Trial by Error by David Tuller The Long COVID Survival Guide and the Role of Patients in Research
About the book "The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next - Stories and Advice from Twenty Long-Haulers and Experts". Tuller speaks with the editor of the book, Fiona Lowenstein, and contributors Lisa McCorkell and Padma Priya. Duration: 1 hour.
Interview here Thread here
Visible monitoring app for people with ME/CFS or Long Covid. The beta app has been launched and is free. The company also plan to sell subscriptions to Visible plus which will include a wearable monitor.
Website here Thread here
VTDigger Emerson Wheeler: We are failing the many people struggling with long Covid
A commentary by public health professional Wheeler on the devastating realities of long Covid.
Article here Thread here
Daily Record Young Scots teacher left unable to read books after crippling long covid battle
Article about Melanie More who has suffered from long Covid since 2020 and has been diagnosed with ME.
Article here Thread here
Solve ME - NBC affiliate WCHM-TV interviewed Dr. Peter Rowe and patient expert Cynthia Adinig about Long Covid. The 4 minute video is available on the Solve ME YouTube channel.
Video here Thread here
Occupy M.E. New York Magazine Article Biased and Riddled with Errors
Jennie Spotila prints an open letter to the editor of New York Magazine outlining the many errors and bias in their recent article, "Has Long COVID Always Existed?"
Article here Thread here
The Washington Post Desperate covid long-haulers turn to costly, unproven treatments
A critical article about the range of undocumented long covid treatments offered to desperate patients. Mentions that some clinicians are drawing on experience from conditions such as ME/CFS, POTS and post-ICU syndrome.
Article here Thread here
................
Research news
Patient-Led Research Collaborative has announced $4.8 million in biomedical research awards funding nine research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions.
Announcement here Thread here
UK DecodeME - a reminder that more UK participants with an ME/CFS diagnosis are needed for this questionnaire and genetic study.
Details and sign up here Thread here
TLC study Cardiovascular and immune parameters being evaluated in Birmingham's TLC Study. June 2022 webinars for this study now available.
Link here Thread here.
................
Research
Our research reports this week are all Long Covid research
HERV-W ENV antigenemia and correlation of increased anti-SARS-CoV-2 immunoglobulin levels with post-COVID-19 symptoms.
"SARS-CoV-2, in line with other infectious agents, has the capacity to activate dormant human endogenous retroviral sequences ancestrally integrated in human genomes (HERVs)."
Article here Thread here.
Long COVID: mechanisms, risk factors and recovery.
"We then interrogate the mechanisms that underlie long COVID symptoms, with a focus on impaired oxygen delivery due to micro-clotting and disruption of cellular energy metabolism, before considering treatment strategies that indirectly or directly tackle these mechanisms."
Article here Thread here
Vocal biomarker predicts fatigue in people with COVID-19: results from the prospective Predi-COVID cohort study.
"Vocal biomarkers, digitally integrated into telemedicine technologies, are expected to improve the monitoring of people with COVID-19 or Long-COVID."
Article here Thread here
Long Covid stigma: estimating burden and validating scale in a UK-based sample. Article here Thread here.
Susceptibility-Weighted Magnetic Resonance Imaging Highlights Brain Alterations in COVID Survivors.
"The group analysis showed that COVID recovered subjects had significantly higher susceptibility values in regions of the frontal lobe and brain stem."
Preprint here Thread here.
Molecular and cellular similarities in the brain of SARS-CoV-2 and Alzheimer’s disease individuals.
"Here we show similar alterations of neuroinflammation and blood-brain barrier integrity in SARS-CoV-2, AD, and SARS-CoV-2 infected AD individuals."
Preprint here Thread here.
................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
UK ME Association Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!
'In early October, the ME Association sent a major mailing to all GP surgeries. In total 8,121 packages were sent, and each included a covering letter and 5 items of literature that we hope will keep frontline healthcare services informed about recent developments.' Materials include MEA guides on the ME/CFS NICE guideline, and on Long Covid.
MEA article here Thread here
Norway Two positive propositions about ME got passed in the Parliament: The Government is asked to review regulations and practice to ensure that ME patients have a right to equal and appropriate treatment when applying for disability benefits and that they'll not be subjected to treatment requirements that are unavailable or refused in the public healthcare system. Patient advocate Sissel Sunde has written a thorough article with details leading up to the resolutions.
Sunde's article here Thread here
An article from NRK about 25 year old Aurora who suffers from severe ME and has been living in an institution for the elderly against her will for nine months. She wishes to receive care at home instead and is supported by local politicians who ask the municipality to do more for her.
Article here Thread here
Medscape has posted a new CME (Continuing Medical Education) course with the title, "Do Fatigue and Exercise Intolerance Post-COVID-19 Indicate a Chronic Disease?" Listed authors include Miriam E. Tucker and Charles P. Vega.
CME course here Thread here
Trial by Error by David Tuller The Long COVID Survival Guide and the Role of Patients in Research
About the book "The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next - Stories and Advice from Twenty Long-Haulers and Experts". Tuller speaks with the editor of the book, Fiona Lowenstein, and contributors Lisa McCorkell and Padma Priya. Duration: 1 hour.
Interview here Thread here
Visible monitoring app for people with ME/CFS or Long Covid. The beta app has been launched and is free. The company also plan to sell subscriptions to Visible plus which will include a wearable monitor.
Website here Thread here
VTDigger Emerson Wheeler: We are failing the many people struggling with long Covid
A commentary by public health professional Wheeler on the devastating realities of long Covid.
Article here Thread here
Daily Record Young Scots teacher left unable to read books after crippling long covid battle
Article about Melanie More who has suffered from long Covid since 2020 and has been diagnosed with ME.
Article here Thread here
Solve ME - NBC affiliate WCHM-TV interviewed Dr. Peter Rowe and patient expert Cynthia Adinig about Long Covid. The 4 minute video is available on the Solve ME YouTube channel.
Video here Thread here
Occupy M.E. New York Magazine Article Biased and Riddled with Errors
Jennie Spotila prints an open letter to the editor of New York Magazine outlining the many errors and bias in their recent article, "Has Long COVID Always Existed?"
Article here Thread here
The Washington Post Desperate covid long-haulers turn to costly, unproven treatments
A critical article about the range of undocumented long covid treatments offered to desperate patients. Mentions that some clinicians are drawing on experience from conditions such as ME/CFS, POTS and post-ICU syndrome.
Article here Thread here
................
Research news
Patient-Led Research Collaborative has announced $4.8 million in biomedical research awards funding nine research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions.
Announcement here Thread here
UK DecodeME - a reminder that more UK participants with an ME/CFS diagnosis are needed for this questionnaire and genetic study.
Details and sign up here Thread here
TLC study Cardiovascular and immune parameters being evaluated in Birmingham's TLC Study. June 2022 webinars for this study now available.
Link here Thread here.
................
Research
Our research reports this week are all Long Covid research
HERV-W ENV antigenemia and correlation of increased anti-SARS-CoV-2 immunoglobulin levels with post-COVID-19 symptoms.
"SARS-CoV-2, in line with other infectious agents, has the capacity to activate dormant human endogenous retroviral sequences ancestrally integrated in human genomes (HERVs)."
Article here Thread here.
Long COVID: mechanisms, risk factors and recovery.
"We then interrogate the mechanisms that underlie long COVID symptoms, with a focus on impaired oxygen delivery due to micro-clotting and disruption of cellular energy metabolism, before considering treatment strategies that indirectly or directly tackle these mechanisms."
Article here Thread here
Vocal biomarker predicts fatigue in people with COVID-19: results from the prospective Predi-COVID cohort study.
"Vocal biomarkers, digitally integrated into telemedicine technologies, are expected to improve the monitoring of people with COVID-19 or Long-COVID."
Article here Thread here
Long Covid stigma: estimating burden and validating scale in a UK-based sample. Article here Thread here.
Susceptibility-Weighted Magnetic Resonance Imaging Highlights Brain Alterations in COVID Survivors.
"The group analysis showed that COVID recovered subjects had significantly higher susceptibility values in regions of the frontal lobe and brain stem."
Preprint here Thread here.
Molecular and cellular similarities in the brain of SARS-CoV-2 and Alzheimer’s disease individuals.
"Here we show similar alterations of neuroinflammation and blood-brain barrier integrity in SARS-CoV-2, AD, and SARS-CoV-2 infected AD individuals."
Preprint here Thread here.
................
S4ME social media: Facebook, Twitter and YouTube
For next week's news go to this thread:
News in Brief - December 2022
News in Brief - December 2022