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News in Brief - February 2022
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Week beginning 31st January 2022
News, articles and advocacy
Professor Øystein Fluge gave a lecture in November 2021 at a conference organised by the Norwegian ME Association. The lecture was titled: "Disease mechanisms in ME/CFS - a model" and has now been uploaded to YouTube. The lecture is in Norwegian only, but there is a summary in English in the thread.
Lecture here Thread here
#MEAction Scotland report that they are a stakeholder in the consultation over implementation of the NICE ME/CFS guideline in Scotland.
Article here Thread here
Sweden Article from December 2021 in a medical journal about the new NICE guidelines from UK informing that CBT and GET as treatment approaches to ME are now gone. The guideline is welcomed by vice chairman of the Swedish patient organisation dr. Sture Eriksson who says this represents a change in the perception of the disease.
Article here Thread here
Infection Control Today Getting a Head Start on Treating Long COVID
Excellent interview with Jamie Seltzer, director of scientific and medical outreach for #MEAction. "We have so much history - recent history as well as 100 years ago - to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications".
Article here Thread here
ME Awareness New Zealand "Position statement on alternative medicine and therapy programmes including the Lightning Process or The Switch."
A good article warning that unevidenced and potentially harmful treatments are being promoted to health care professionals who are recommending them to patients.
Article here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity" by Davenport et al.
In this first of 4 articles on the JOSPT blog, Davenport and team describe Post Exertional Symptom Exacerbation and how to identify it, including using a 2 day cardiopulmonary exercise test, and how to advise patients with Long Covid or ME/CFS on management.
Article here Thread here
Video: The Most Underfunded Disease at the NIH
Excellent advocacy video by Winston Blick explaining that NIH research funding for ME/CFS is not commensurate with its disease burden or its estimated cost to the economy.
Video here Thread here
#MEAction "Facets of ME"
#MEAction has launched a new educational feature called Facets of ME. One specific aspect of ME will be discussed online (Twitter, Facebook, Instagram, and their website) each month, on the first Friday of the month.
Announcement here Thread here
Trial by Error by David Tuller More on the Dutch CBT Long Covid Trial; Finnish Study of "Amygdala Retraining" Program
About a problematic Dutch trial on CBT as prevention of severe fatigue in Long Covid. Now three patient organisations have published their own critical report about the study in the hope that future grants instead will be awarded to treatments based on scientific knowledge about the disease.
Tuller also calls out a Finnish clinical trial as a farce. The trial is on "Amygdala and Insula Retraining (AIR)" for BDS, Fibromyalgia, Long Covid and ME/CFS.
Article here Thread here
.......................
Research
BMJ Open
“What treatments work for anxiety and depression in children and adolescents with chronic fatigue syndrome? An updated systematic review” by Clery et al.
The authors updated a systematic review, identifying two new studies. Their review concludes, however, that “the evidence is of poor quality and insufficient to conclude which interventions are effective at treating comorbid anxiety and/or depression in paediatric CFS/ME.”
Article here Thread here
Current research studies on ME/CFS and related conditions
Forum member Andy has started threads for some studies in progress worldwide. They are listed in the research forums here, here and here.
Some examples include:
Intestinal Microbiota and Chronic Fatigue Syndrome
Assessment of Exercise Response in CFS/ ME
Inspiratory Muscle Training in ME/CFS and COVID-19 Survivors (Inspire ME)
A Longitudinal Study on Longstanding Complicated Fatigue: (ME/CFS), Burnout Syndrome and Post-covid Fatigue
CBT Based Group Therapy for Patients With CFS
........................
Other media items
Vox What causes long Covid? Scientists are zeroing in on the answer
Includes interviews with several scientists who are narrowing Long Covid down to either symptoms driven by the immune system or persistent virus. Microbiologist Amy Proal mentions previous work on ME suggesting that persistent virus can lead to chronic illness after acute infection.
Article here Thread here
PolyBio Research center
A lecture by dr Michael VanElzakker titled "Considerations when developing 'Long-COVID' therapeutic" that he recently gave to the American Society of Gene & Cell Therapy.
Dr. Amy Proal with new podcast episode titled "Interview with Dr. Akiko Iwasaki: An overview of her research on LongCovid and ME/CFS.
VanElzakker talk here Interview with dr. Iwasaki here Thread here
The Tyee Ed Yong Explained the Plague Expertly. Now, 'Magical' Animals
Interview with Ed Yong about his new book and his coverage of the pandemic as science journalist. He says reporting on Long Covid broadened his understanding of chronic illness. "I hadn't ever written about things like dysautonomia or ME (also called chronic fatigue syndrome) before this pandemic happened, and now I don't think I'll ever not thing about them"
Article here Thread here
The Nevada Independent When will I get better from COVID-19?
Article by professor emeritus Caroline Christian on Long Covid where she urges that medicine and policies advances quickly to help those with long-term problems after Covid, and that research into Long Covid must build on ME/CFS research.
Article here Thread here
The Guardian The great gaslighting: how Covid long haulers are still fighting for recognition
A good feature article by Mike Mariani who himself suffers from ME. He makes comparisons with the gaslighting long Covid sufferers are subjected to to the misdiagnosing and psychologising previous patients groups have experienced.
Article here Thread here
Other items of interest
SFGate Coronavirus cases are dropping. It's time to talk about long COVID.
Article here Thread here
Science News A faulty immune response may be behind lingering brain trouble after COVID-19
Article here Thread here
BMJ The BMJ Interview: Peter Piot
Article here (Paywalled) Thread here
YouTube Congresswoman Ayanna Pressley speaks with COVID-19 Longhauler Advocacy Project. Includes a segment with dr. Lucinda Bateman at 1h 3m.
Video here Thread here
The Project TV What Makes Some More Vulnerable to Long COVID Than Others?
Tweet with TV segment here Thread here
Time Long COVID Patients Are Waiting Months for Care, and the Problem May Only Get Worse
Article here Thread here
news.com.au 'Mass disability event' warning as huge numbers diagnosed with long Covid
Article here Thread here
........................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Professor Øystein Fluge gave a lecture in November 2021 at a conference organised by the Norwegian ME Association. The lecture was titled: "Disease mechanisms in ME/CFS - a model" and has now been uploaded to YouTube. The lecture is in Norwegian only, but there is a summary in English in the thread.
Lecture here Thread here
#MEAction Scotland report that they are a stakeholder in the consultation over implementation of the NICE ME/CFS guideline in Scotland.
Article here Thread here
Sweden Article from December 2021 in a medical journal about the new NICE guidelines from UK informing that CBT and GET as treatment approaches to ME are now gone. The guideline is welcomed by vice chairman of the Swedish patient organisation dr. Sture Eriksson who says this represents a change in the perception of the disease.
Article here Thread here
Infection Control Today Getting a Head Start on Treating Long COVID
Excellent interview with Jamie Seltzer, director of scientific and medical outreach for #MEAction. "We have so much history - recent history as well as 100 years ago - to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications".
Article here Thread here
ME Awareness New Zealand "Position statement on alternative medicine and therapy programmes including the Lightning Process or The Switch."
A good article warning that unevidenced and potentially harmful treatments are being promoted to health care professionals who are recommending them to patients.
Article here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity" by Davenport et al.
In this first of 4 articles on the JOSPT blog, Davenport and team describe Post Exertional Symptom Exacerbation and how to identify it, including using a 2 day cardiopulmonary exercise test, and how to advise patients with Long Covid or ME/CFS on management.
Article here Thread here
Video: The Most Underfunded Disease at the NIH
Excellent advocacy video by Winston Blick explaining that NIH research funding for ME/CFS is not commensurate with its disease burden or its estimated cost to the economy.
Video here Thread here
#MEAction "Facets of ME"
#MEAction has launched a new educational feature called Facets of ME. One specific aspect of ME will be discussed online (Twitter, Facebook, Instagram, and their website) each month, on the first Friday of the month.
Announcement here Thread here
Trial by Error by David Tuller More on the Dutch CBT Long Covid Trial; Finnish Study of "Amygdala Retraining" Program
About a problematic Dutch trial on CBT as prevention of severe fatigue in Long Covid. Now three patient organisations have published their own critical report about the study in the hope that future grants instead will be awarded to treatments based on scientific knowledge about the disease.
Tuller also calls out a Finnish clinical trial as a farce. The trial is on "Amygdala and Insula Retraining (AIR)" for BDS, Fibromyalgia, Long Covid and ME/CFS.
Article here Thread here
.......................
Research
BMJ Open
“What treatments work for anxiety and depression in children and adolescents with chronic fatigue syndrome? An updated systematic review” by Clery et al.
The authors updated a systematic review, identifying two new studies. Their review concludes, however, that “the evidence is of poor quality and insufficient to conclude which interventions are effective at treating comorbid anxiety and/or depression in paediatric CFS/ME.”
Article here Thread here
Current research studies on ME/CFS and related conditions
Forum member Andy has started threads for some studies in progress worldwide. They are listed in the research forums here, here and here.
Some examples include:
Intestinal Microbiota and Chronic Fatigue Syndrome
Assessment of Exercise Response in CFS/ ME
Inspiratory Muscle Training in ME/CFS and COVID-19 Survivors (Inspire ME)
A Longitudinal Study on Longstanding Complicated Fatigue: (ME/CFS), Burnout Syndrome and Post-covid Fatigue
CBT Based Group Therapy for Patients With CFS
........................
Other media items
Vox What causes long Covid? Scientists are zeroing in on the answer
Includes interviews with several scientists who are narrowing Long Covid down to either symptoms driven by the immune system or persistent virus. Microbiologist Amy Proal mentions previous work on ME suggesting that persistent virus can lead to chronic illness after acute infection.
Article here Thread here
PolyBio Research center
A lecture by dr Michael VanElzakker titled "Considerations when developing 'Long-COVID' therapeutic" that he recently gave to the American Society of Gene & Cell Therapy.
Dr. Amy Proal with new podcast episode titled "Interview with Dr. Akiko Iwasaki: An overview of her research on LongCovid and ME/CFS.
VanElzakker talk here Interview with dr. Iwasaki here Thread here
The Tyee Ed Yong Explained the Plague Expertly. Now, 'Magical' Animals
Interview with Ed Yong about his new book and his coverage of the pandemic as science journalist. He says reporting on Long Covid broadened his understanding of chronic illness. "I hadn't ever written about things like dysautonomia or ME (also called chronic fatigue syndrome) before this pandemic happened, and now I don't think I'll ever not thing about them"
Article here Thread here
The Nevada Independent When will I get better from COVID-19?
Article by professor emeritus Caroline Christian on Long Covid where she urges that medicine and policies advances quickly to help those with long-term problems after Covid, and that research into Long Covid must build on ME/CFS research.
Article here Thread here
The Guardian The great gaslighting: how Covid long haulers are still fighting for recognition
A good feature article by Mike Mariani who himself suffers from ME. He makes comparisons with the gaslighting long Covid sufferers are subjected to to the misdiagnosing and psychologising previous patients groups have experienced.
Article here Thread here
Other items of interest
SFGate Coronavirus cases are dropping. It's time to talk about long COVID.
Article here Thread here
Science News A faulty immune response may be behind lingering brain trouble after COVID-19
Article here Thread here
BMJ The BMJ Interview: Peter Piot
Article here (Paywalled) Thread here
YouTube Congresswoman Ayanna Pressley speaks with COVID-19 Longhauler Advocacy Project. Includes a segment with dr. Lucinda Bateman at 1h 3m.
Video here Thread here
The Project TV What Makes Some More Vulnerable to Long COVID Than Others?
Tweet with TV segment here Thread here
Time Long COVID Patients Are Waiting Months for Care, and the Problem May Only Get Worse
Article here Thread here
news.com.au 'Mass disability event' warning as huge numbers diagnosed with long Covid
Article here Thread here
........................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 7th February 2022
News, articles and advocacy
UK - DecodeME The January webinar video and audio recordings and transcript are now available on the DecodeME website. The webinar includes updates from Prof Ponting and input from patients and carers.
Article with links here Thread here
Norway A controversial study on the alternative method Lightning Process as treatment for ME lost its ethical approval last year. One of the Regional Committees for Medical and Health Research Ethics has now granted a new approval after some minor changes to the protocol. Patient advocate Nina E. Steinkopf has followed the case closely and written a blog post about the recent developments. Also a news site about research and a news site from academia have written about the renewed approval.
Steinkopf's article here (in Norwegian) News articles here and here (in Norwegian) Thread here
Trial by Error by David Tuller My exchange of Letters on Amygdala Retraining; That Undead Lightning Process Study
Tuller's recent letter with some critical questions to a researcher behind a Finnish study on "amygdala and insula retraining" as treatment for ME/CFS and other diagnoses, was met with a refusal to discuss details of the study. Tuller also gives an update concerning the new ethical approval of a study on the alternative method Lightning Process (see item above).
Article here Thread here
Mike's EU Marathons Mike Harley will be running his final marathon in Rome in March to raise funds for Invest in ME Research UK. He was interviewed briefly about this project on Radio Bristol this week.
Radio link here Fundraiser here Thread here
Emerge Australia has appointed Dr. Richard Schloeffel to the position of Medical Director. His role will include advising on scientific and clinical aspects of ME/CFS. S4ME members have raised concerns about his use of unevidenced alternative therapies in his medical practice.
Thread here
NIH webinar "Columbia University, Center for Solutions for ME/CFS"
This video, part of the MECFSnet webinar series, is from the Columbia University Center for Solutions for ME/CFS. Dr. Ian Lipkin and his research team discuss their latest findings.
Video here Thread here
The Lancet
"New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp et al.
In this paywalled article several well known proponents of the CBT/GET approach to treatment for ME/CFS suggest the new NICE guideline removal of these treatments was unduly influenced by ideology, preconceptions and conflicts of interest on the guideline committee. 'The new guideline presents strengthened evidence, but a major shift in interpretation. How could this happen?'.
Article here Thread here
Denmark Opinion piece by dr. Jesper Mehlsen and psychologist Peter La Cour in the newspaper Kristeligt Dagblad. They criticise Denmark's approach to ME as a functional disorder, the health authorities for not following up the 2019 Parliament notion on using WHO's classification of ME and urge Denmark to keep up with the UK NICE guidelines.
Article here (paywalled) Thread here
European ME Coalition (EMEC)
On 28 January 2022, the first meeting of a new parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was held. Organized by Pascal Arimont, the group will allow for a more structured collaboration on topics concerning the illness ME/CFS in the European Parliament.
Article here Thread here
Germany
The hearing on the SIGNforMECFS petition will take place on Monday 14 February at 12 noon (German time) in the Bundestag. The session will be broadcast live. Meanwhile, more votes have been counted, totaling 97,000 votes in a period of 28 days.
Thread here
ME/CFS Skeptic: The dark psychosomatic history of cancer part II
The blog ME/CFS skeptic explores the problematic history of cancer. The second installment is about the myth that people who repress their anger and emotions are more likely to develop cancer. It also investigate claims made about ‘a fighting spirit’, that linger on to this day.
Article here Thread here
.................
Useful Resources
Myalgic Encephalomyelitis: Educational Webinar Series
Doctors with ME article listing, linking and describing the webinars in this series organised by Hope 4 ME and Fibro Northern Ireland.
Article here Thread here
Bateman Horne Center The ME/CFS Crash Survival Guide
Bateman Horne Center has made a Crash Survival Guide to support patients, network and medical providers on how to prevent or manage an ME/CFS crash.
Guide here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 2: Physiological Characteristics During Acute Exercise Are Abnormal in People With Postexertional Symptoms Excacerbation"
The second in this series of JOSPT blog articles summarises key physiological findings based on the team's 2-day cardiopulmonary testing.
Article here Thread here
..................
Research
Scientific Reports
"Systematic review and meta-analysis of cognitive impairment in ME/CFS" by Sebaiti et al
Analysis of 33 studies using objective cognitive tests found heterogeneous results. Some aspects of cognitive function were significantly impaired in ME/CFS patients: 'immediate visual memory, reaction time and processing speed (reading and writing) seemed preferentially affected in ME/CFS patients, while attentional capacities and episodic memory appeared affected less constantly.' The pattern of deficits was different from those found in depression and chronic pain. The authors make suggestions for screening tests and for future research.
Article here Thread here
Pediatrics International
Clinical Notes "Myalgic encephalomyelitis/chronic fatigue syndrome post coronavirus disease 2019" by Yoshiki Kusama et al.
A case report of a 14 year old boy hospitalised with long Covid ME/CFS.
'The exacerbation of symptoms upon exertion is known as PEM; avoiding extensive work is the essential aspect of ME/CFS management. In this case, the patient's muscle fatigue and weakness dramatically improved with activity restriction due to hospitalization.'
Article here Thread here
Preprint (not peer reviewed)
"Broken Connections: The Evidence for Neuroglial Failure in ME/CFS" by
Herbert Renz-Polster and Dorothee Bienzle
The lead author explains that he is a pediatrician, not a neurologist, and has written this 50+ page hypothesis article based on reading research papers on ME/CFS which he has suffered from for several years. The article focuses on 'finding the final pathogenetic pathway(s) which may underlie the clinical manifestations of ME/CFS'.
Article here Thread here
Preprint (not yet peer reviewed)
"Targeting the Monocytic-Endothelial-Platelet Axis with Maraviroc and Pravastatin as a Therapeutic Option to Treat Long COVID/Post-Acute Sequelae of COVID (PASC)" by Patterson et al.
Reports on a small pilot study using a combination of 2 drugs maraviroc, and pravastatin. The authors conclude that patient improvements on the treatment provide a basis for a future double blind trial.
Article here Thread here
The Lancet Child & Adolescent Health
“Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study” by Stephenson et al.
This is one of the first publications from the CLoCk research project. The authors report that “adolescents who tested positive for SARS-CoV-2 had similar symptoms to those who tested negative, but had a higher prevalence of single and, particularly, multiple symptoms at the time of PCR testing and 3 months later.”
Article here Thread here
The Pediatric Infectious Disease Journal
“Pediatric Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Overlaps and Opportunities” by Sibbery & Rowe.
In this commentary, Vikram Siberry and Peter Rowe discuss the overlap between Long COVID and ME/CFS in children. They write: “historically, there has been medical neglect of patients with ME/CFS due in part to the incorrect assumption that the etiology of the illness was behavioral or psychiatric in nature.”
Article here Thread here
.................
Other items of interest
The Mercury News What does COVID-19 do to your brain?
About Dr. Serena Spudich's and Dr. Avindra Nath's recent paper in Science on nervous system consequences of COVID-19. Includes quotes from Jaime Seltzer from #MEAction saying neurological symptoms of Long COVID can provide insight in ME.
Article here Thread here
BR24 Article from Germany on vaccination's effect on Long Covid. Professor Carmen Scheibenbogen is quoted and says ME/CFS is the most severe and chronic form of Long Covid. She estimates that around 1% of people with Covid-19 could develop ME/CFS.
Article here (in German) Thread here
The Guardian 'We never seem to recover': the Australians grappling with long Covid
Includes some mentions of ME. "The idea that viruses can have long-term ramifications isn't really new. We have decided over the past 100 years not to pay attention to it".
Article here Thread here
The New York Times 'I Had Never Felt Worse': Long Covid Sufferers Are Struggling With Exercise
About PEM in Long Covid. Includes an interview with Dr. David Systrom and mentions that physicians have been advising CFS patients to exercise, but that the treatment made the patients worse and is no longer recommended.
Article here Thread here
Bloomberg What Experts Know About 'Long Covid' and Who Gets It
Article here Thread here
Medscape Promising Leads to Crack Long COVID Discovered
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
UK - DecodeME The January webinar video and audio recordings and transcript are now available on the DecodeME website. The webinar includes updates from Prof Ponting and input from patients and carers.
Article with links here Thread here
Norway A controversial study on the alternative method Lightning Process as treatment for ME lost its ethical approval last year. One of the Regional Committees for Medical and Health Research Ethics has now granted a new approval after some minor changes to the protocol. Patient advocate Nina E. Steinkopf has followed the case closely and written a blog post about the recent developments. Also a news site about research and a news site from academia have written about the renewed approval.
Steinkopf's article here (in Norwegian) News articles here and here (in Norwegian) Thread here
Trial by Error by David Tuller My exchange of Letters on Amygdala Retraining; That Undead Lightning Process Study
Tuller's recent letter with some critical questions to a researcher behind a Finnish study on "amygdala and insula retraining" as treatment for ME/CFS and other diagnoses, was met with a refusal to discuss details of the study. Tuller also gives an update concerning the new ethical approval of a study on the alternative method Lightning Process (see item above).
Article here Thread here
Mike's EU Marathons Mike Harley will be running his final marathon in Rome in March to raise funds for Invest in ME Research UK. He was interviewed briefly about this project on Radio Bristol this week.
Radio link here Fundraiser here Thread here
Emerge Australia has appointed Dr. Richard Schloeffel to the position of Medical Director. His role will include advising on scientific and clinical aspects of ME/CFS. S4ME members have raised concerns about his use of unevidenced alternative therapies in his medical practice.
Thread here
NIH webinar "Columbia University, Center for Solutions for ME/CFS"
This video, part of the MECFSnet webinar series, is from the Columbia University Center for Solutions for ME/CFS. Dr. Ian Lipkin and his research team discuss their latest findings.
Video here Thread here
The Lancet
"New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp et al.
In this paywalled article several well known proponents of the CBT/GET approach to treatment for ME/CFS suggest the new NICE guideline removal of these treatments was unduly influenced by ideology, preconceptions and conflicts of interest on the guideline committee. 'The new guideline presents strengthened evidence, but a major shift in interpretation. How could this happen?'.
Article here Thread here
Denmark Opinion piece by dr. Jesper Mehlsen and psychologist Peter La Cour in the newspaper Kristeligt Dagblad. They criticise Denmark's approach to ME as a functional disorder, the health authorities for not following up the 2019 Parliament notion on using WHO's classification of ME and urge Denmark to keep up with the UK NICE guidelines.
Article here (paywalled) Thread here
European ME Coalition (EMEC)
On 28 January 2022, the first meeting of a new parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was held. Organized by Pascal Arimont, the group will allow for a more structured collaboration on topics concerning the illness ME/CFS in the European Parliament.
Article here Thread here
Germany
The hearing on the SIGNforMECFS petition will take place on Monday 14 February at 12 noon (German time) in the Bundestag. The session will be broadcast live. Meanwhile, more votes have been counted, totaling 97,000 votes in a period of 28 days.
Thread here
ME/CFS Skeptic: The dark psychosomatic history of cancer part II
The blog ME/CFS skeptic explores the problematic history of cancer. The second installment is about the myth that people who repress their anger and emotions are more likely to develop cancer. It also investigate claims made about ‘a fighting spirit’, that linger on to this day.
Article here Thread here
.................
Useful Resources
Myalgic Encephalomyelitis: Educational Webinar Series
Doctors with ME article listing, linking and describing the webinars in this series organised by Hope 4 ME and Fibro Northern Ireland.
Article here Thread here
Bateman Horne Center The ME/CFS Crash Survival Guide
Bateman Horne Center has made a Crash Survival Guide to support patients, network and medical providers on how to prevent or manage an ME/CFS crash.
Guide here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 2: Physiological Characteristics During Acute Exercise Are Abnormal in People With Postexertional Symptoms Excacerbation"
The second in this series of JOSPT blog articles summarises key physiological findings based on the team's 2-day cardiopulmonary testing.
Article here Thread here
..................
Research
Scientific Reports
"Systematic review and meta-analysis of cognitive impairment in ME/CFS" by Sebaiti et al
Analysis of 33 studies using objective cognitive tests found heterogeneous results. Some aspects of cognitive function were significantly impaired in ME/CFS patients: 'immediate visual memory, reaction time and processing speed (reading and writing) seemed preferentially affected in ME/CFS patients, while attentional capacities and episodic memory appeared affected less constantly.' The pattern of deficits was different from those found in depression and chronic pain. The authors make suggestions for screening tests and for future research.
Article here Thread here
Pediatrics International
Clinical Notes "Myalgic encephalomyelitis/chronic fatigue syndrome post coronavirus disease 2019" by Yoshiki Kusama et al.
A case report of a 14 year old boy hospitalised with long Covid ME/CFS.
'The exacerbation of symptoms upon exertion is known as PEM; avoiding extensive work is the essential aspect of ME/CFS management. In this case, the patient's muscle fatigue and weakness dramatically improved with activity restriction due to hospitalization.'
Article here Thread here
Preprint (not peer reviewed)
"Broken Connections: The Evidence for Neuroglial Failure in ME/CFS" by
Herbert Renz-Polster and Dorothee Bienzle
The lead author explains that he is a pediatrician, not a neurologist, and has written this 50+ page hypothesis article based on reading research papers on ME/CFS which he has suffered from for several years. The article focuses on 'finding the final pathogenetic pathway(s) which may underlie the clinical manifestations of ME/CFS'.
Article here Thread here
Preprint (not yet peer reviewed)
"Targeting the Monocytic-Endothelial-Platelet Axis with Maraviroc and Pravastatin as a Therapeutic Option to Treat Long COVID/Post-Acute Sequelae of COVID (PASC)" by Patterson et al.
Reports on a small pilot study using a combination of 2 drugs maraviroc, and pravastatin. The authors conclude that patient improvements on the treatment provide a basis for a future double blind trial.
Article here Thread here
The Lancet Child & Adolescent Health
“Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study” by Stephenson et al.
This is one of the first publications from the CLoCk research project. The authors report that “adolescents who tested positive for SARS-CoV-2 had similar symptoms to those who tested negative, but had a higher prevalence of single and, particularly, multiple symptoms at the time of PCR testing and 3 months later.”
Article here Thread here
The Pediatric Infectious Disease Journal
“Pediatric Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Overlaps and Opportunities” by Sibbery & Rowe.
In this commentary, Vikram Siberry and Peter Rowe discuss the overlap between Long COVID and ME/CFS in children. They write: “historically, there has been medical neglect of patients with ME/CFS due in part to the incorrect assumption that the etiology of the illness was behavioral or psychiatric in nature.”
Article here Thread here
.................
Other items of interest
The Mercury News What does COVID-19 do to your brain?
About Dr. Serena Spudich's and Dr. Avindra Nath's recent paper in Science on nervous system consequences of COVID-19. Includes quotes from Jaime Seltzer from #MEAction saying neurological symptoms of Long COVID can provide insight in ME.
Article here Thread here
BR24 Article from Germany on vaccination's effect on Long Covid. Professor Carmen Scheibenbogen is quoted and says ME/CFS is the most severe and chronic form of Long Covid. She estimates that around 1% of people with Covid-19 could develop ME/CFS.
Article here (in German) Thread here
The Guardian 'We never seem to recover': the Australians grappling with long Covid
Includes some mentions of ME. "The idea that viruses can have long-term ramifications isn't really new. We have decided over the past 100 years not to pay attention to it".
Article here Thread here
The New York Times 'I Had Never Felt Worse': Long Covid Sufferers Are Struggling With Exercise
About PEM in Long Covid. Includes an interview with Dr. David Systrom and mentions that physicians have been advising CFS patients to exercise, but that the treatment made the patients worse and is no longer recommended.
Article here Thread here
Bloomberg What Experts Know About 'Long Covid' and Who Gets It
Article here Thread here
Medscape Promising Leads to Crack Long COVID Discovered
Article here Thread here
...................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 14th February 2022
News, articles and advocacy
USA NIH has announced new grants for the ME/CFS Collaborative Research Center (CRC) program.
Announcements here and here Thread here
MEAction "NIH Comes Up Short Again"
The latest NIH announcement of research funding shows no increase even though the "CRCs themselves have previously stated they do not have the necessary funds to carry out their mission."
Article here Thread here
Germany The German ME/CFS Association has published an article on the parliamentary hearing on ME/CFS on 14 February. One of the petitioners and patient with ME/CFS, Daniel Loy, gave a powerful opening statement while Prof. Carmen Scheibenbogen provided further information about ME/CFS.
Article here Thread here
UK parliamentary petition "Fund research into any relationship between microclots and long Covid and ME".
This has received a written response from the Department of Health and Social Care. It states the amount spent recently on ME/CFS and Long Covid research, and says there is a highlight notice for some specified aspects of biomedical ME/CFS research but funds are not ringfenced for particular topics.
Thread with response here
UK Daily Express published an article under the heading "Chronic fatigue syndrome: Study finds the most effective treatment to reduce symptoms" which reported a CBT study with claims of effectiveness. Following a complaint from Forward ME the article was significantly amended with quotes from the new NICE guideline under the new heading"Chronic fatigue syndrome: Important guideline change for CBT as 'treatment' for condition".
Article here Thread here
Trial by Error by David Tuller
"My Letter Responding to Norway Health Leader's Efforts to Denigrate My "Activist" Work"
In an email from 2020 to Norway's Research Center in Complementary and Alternative medicine (NAFKAM), Dr Flottorp from the Norwegian Institute of Public Health characterised Dr David Tuller as an "ME-activist" while dismissing criticism of Prof. Crawley's LP study. Tuller writes to head of NAFKAM, Dr Miek Jong filling her in on both his academic credentials and why the study is criticised.
Letter here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 3: “Energy System First Aid” for People With Postexertional Symptom Exacerbation (PESE)" by Davenport et al.
In this third of 4 articles on the JOSPT blog, Davenport and team explain that aerobic activity does not function properly for people with PESE, and therefore 'quota-based progressive exercise jeopardizes the ability to attain initial physiological and symptom stabilization'. They provide summary advice on pacing using the energy envelope idea, and suggest heart rate monitoring and key symptom tracking can help.
Article here Thread here
Norway A new website has been launched sharing over 30 inside stories from people who have tried the controversial alternative method The Lightning Process.
Website here (in Norwegian) Thread here
A Life Hidden What It Means to Be Clinically Vulnerable in a World of Covid
Naomi Whittingham writes about the exposed position for clinically vulnerable people as society is easing Covid restrictions. "There is a glaring lack of consistent, scientifically-based support and advice for those with pre-existing conditions. Two years into a global pandemic, this is a terrible indictment of those in charge".
Article here Thread here
Denmark Article in a medical journal about ME sufferer Rasmus' long journey for a diagnosis and help to live with the disease. The article also mentions the new NICE guidelines and the motion from the Danish Parliament to stop classifying ME as a functional disorder.
Article here Thread here
UK Maudsley Learning Podcast Chronic Fatigue Syndrome/ME with Dr Charles Shepherd
A 1 hour interview with Hon Medical Advisor to the ME Association, Charles Shepherd covering a broad range of topics concerning ME.
Podcast here Thread here
...............
Opinion piece about the NICE ME/CFS guideline and responses
The Lancet
"New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp, Brurberg, Fink, Knoop and Wyller.
As we reported last week, the authors, all well known supporters of the biopsychosocial model of ME/CFS and CBT/GET treatments, argued that the guideline committee was biased in its review of evidence. Below are some responses:
Trial by Error by David Tuller
"The Lancet Published Whine de Coeur from Impassioned GET/CBT Defenders"
About the recent Lancet comment from Flottorp et al accusing the NICE ME guideline for relying more on ideology than science. "They are on the wrong side of a crumbling paradigm, and they sense it, and in this tendentious document they come across as dismayed, confused, and even scared."
Article here Thread here
ME/CFS skeptic
A new blog post by ME/CFS Skeptic provides and excellent detailed dissection of the arguments made by Flottorp and colleagues in their critique of the new NICE guidance in the Lancet.
Article here Thread here
Professor Jonathan Edwards, expert witness on clinical trial methodology to the NICE guideline committee, has written to the authors and included Professor Garner who has supported the article on social media. He points out that he has no vested interests, unlike the authors. 'What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons.'
Letter here
...............
Advocacy action
UK Forward ME Survey A Picture of_ME: media images of ME
As part of a project to encourage the media to use more appropriate images to illustrate articles about ME, Forward ME have set up a survey asking people to rate the suitability of 6 images used in UK media articles.
Thread with link to the survey here
UK Forward ME are asking for feedback on whether ME/CFS clinics' communications have been updated to reflect the new NICE guideline.
Thread here
....................
Coming events
New Zealand Webinar for health professionals
A practical approach to ME/CFS (Chronic Fatigue Syndrome) by Dr Cathy Stephenson - Wed 23rd Feb 7-8PM
The My HealthHub webinar series are endorsed by the Royal New Zealand College of General Practitioners (RNZCGP) and 1 CME credit can be claimed.
Details here Thread here
...............
Job vacancy
ME Research UK is advertising for a full time science writer. Closing date for applications 15th March 2022.
'Our Science Writer will hold a key position within a small but growing team of staff tasked with interpreting, explaining and contextualising research into ME/CFS in order to raise the charity’s presence and visibility'.
Details here Thread here
..................
Research
Journal of Translational Medicine
"Impaired TRPM3-dependent calcium influx and restoration using Naltrexone in natural killer cells of ME/CFS" by Eaton-Fitch et al
This team from Griffith University have previously hypothesised from small studies that ME/CFS an NK cell ion channel disorder. In this study NK cells were isolated from10 ME/CFS patients and10 matched healthy controls. They found that naltrexone restores impaired TRPM3 function in NK cells of ME/CFS patients.
Paper here Thread here
Environmental Research and Public Health
"Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS Patients" by Ting Yu Wu et al.
This preliminary study of 236 ME/CFS patients in Florida who had a history of exposure to mold in water damaged buildings found mycotoxins in the urine of 92%. The authors discuss the effects of mycotoxins on the body and suggest they may play a role in ME/CFS symptoms for some patients, and further investigations are warranted, however there was no control group comparison.
Article here Thread here
Journal of Translational Medicine
"Physiological assessment of orthostatic intolerance in chronic fatigue syndrome" by Natelson et al.
63 patients diagnosed with Fukuda criteria did a 10 minute standing lean test for orthostatic intolerance. The researchers found some patients had postural orthostatic syndrome of hypocapnia [POSH] which is normally caused by hyperventilation. Some others had postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH).
Paper here Thread here
International Journal of Molecular Sciences
"Implication of Covid-19 on Erythrocytes Functionality: Red Blood Cell Biochemical Implications and Morpho-Functional Aspects" by Russo et al.
During acute Covid-19 infection severity of changes in red blood cells matched severity of illness. The authors suggest it would be helpful to track this in severely ill patients. 'Finally monitored changes in erythrocytes and blood, in general, may be one of the causes of the condition known as Long COVID.'
Paper here Thread here
Healthcare
“Is It Useful to Question the Recovery Behaviour of Patients with ME/CFS or Long COVID?” by Vink and Vink-Niese
ME/CFS patient and former insurance physician Mark Vink made a comprehensive overview of the effect of rehabilitative interventions on work-related outcomes in ME/CFS. The authors conclude that more patients are unable to work after treatment with cognitive behavior therapy and graded exercise therapy than before treatment with them.
Article here Thread here
..............
Other items of interest
Scientific American "COVID Long Haulers Are Calling Attention to Chronic Illness"
On how the scope of Long Covid is making post viral disease more visible with several mentions of ME/CFS. "It is time for medical researchers to investigate these long-contested illnesses with the full force of science's power and for medical educators to train doctors in how to effectively care for chronically ill patients".
Article here Thread here
northjersey.com "COVID could launch an epidemic of chronic fatigue syndrome, doctors warn"
The article refers to research suggesting the pandemic might more than triple the prevalence of ME. Robert Sklans from #MEAction Network says: "When we saw COVID happening, people in the ME community were some of the first to raise alarm bells that his was going to be a mass disabling event". NIH's Koroshetz says: "doctors will have to become skilled in taking care of persistent problems... The silver lining is it may increase good care for people with ME/CFS, whether from COVID or not".
Article here Thread here
New England Journal of Medicine (Supplement) "Studying Long COVID"
In this 30 minute interview (audio only, no transcript) the editors talk with Cliff Rosen, principal investigator in the NIH-funded RECOVER Initiative’s study of long Covid.
Interview here Thread here
NYT How Long Covid Exhausts the Body
On current hypotheses concerning Long Covid pathology with mentions of similarities to ME. Prof. Akiko Iwasaki, Dr. Avindra Nath and Dr. David Systrom are among the experts interviewed for the article.
Article here Thread here
Independent.ie Tackling brain fog and other nasty legacies Covid-19 has left in its wake
Article here (paywalled) Thread here
Kyodo News FEATURE: Reduced brain function, immune disorder a possibility of "long COVID"
Article here Thread here
Nature Lessons from Long COVID: working with patients to design better research
Article here Thread here
New Haven Register Long COVID fatigue may not be a heart or lung problem, Yale doctors say
Article here Thread here
uchealth People get help for a variety of confusing symptoms of long COVID
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
USA NIH has announced new grants for the ME/CFS Collaborative Research Center (CRC) program.
Announcements here and here Thread here
MEAction "NIH Comes Up Short Again"
The latest NIH announcement of research funding shows no increase even though the "CRCs themselves have previously stated they do not have the necessary funds to carry out their mission."
Article here Thread here
Germany The German ME/CFS Association has published an article on the parliamentary hearing on ME/CFS on 14 February. One of the petitioners and patient with ME/CFS, Daniel Loy, gave a powerful opening statement while Prof. Carmen Scheibenbogen provided further information about ME/CFS.
Article here Thread here
UK parliamentary petition "Fund research into any relationship between microclots and long Covid and ME".
This has received a written response from the Department of Health and Social Care. It states the amount spent recently on ME/CFS and Long Covid research, and says there is a highlight notice for some specified aspects of biomedical ME/CFS research but funds are not ringfenced for particular topics.
Thread with response here
UK Daily Express published an article under the heading "Chronic fatigue syndrome: Study finds the most effective treatment to reduce symptoms" which reported a CBT study with claims of effectiveness. Following a complaint from Forward ME the article was significantly amended with quotes from the new NICE guideline under the new heading"Chronic fatigue syndrome: Important guideline change for CBT as 'treatment' for condition".
Article here Thread here
Trial by Error by David Tuller
"My Letter Responding to Norway Health Leader's Efforts to Denigrate My "Activist" Work"
In an email from 2020 to Norway's Research Center in Complementary and Alternative medicine (NAFKAM), Dr Flottorp from the Norwegian Institute of Public Health characterised Dr David Tuller as an "ME-activist" while dismissing criticism of Prof. Crawley's LP study. Tuller writes to head of NAFKAM, Dr Miek Jong filling her in on both his academic credentials and why the study is criticised.
Letter here Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 3: “Energy System First Aid” for People With Postexertional Symptom Exacerbation (PESE)" by Davenport et al.
In this third of 4 articles on the JOSPT blog, Davenport and team explain that aerobic activity does not function properly for people with PESE, and therefore 'quota-based progressive exercise jeopardizes the ability to attain initial physiological and symptom stabilization'. They provide summary advice on pacing using the energy envelope idea, and suggest heart rate monitoring and key symptom tracking can help.
Article here Thread here
Norway A new website has been launched sharing over 30 inside stories from people who have tried the controversial alternative method The Lightning Process.
Website here (in Norwegian) Thread here
A Life Hidden What It Means to Be Clinically Vulnerable in a World of Covid
Naomi Whittingham writes about the exposed position for clinically vulnerable people as society is easing Covid restrictions. "There is a glaring lack of consistent, scientifically-based support and advice for those with pre-existing conditions. Two years into a global pandemic, this is a terrible indictment of those in charge".
Article here Thread here
Denmark Article in a medical journal about ME sufferer Rasmus' long journey for a diagnosis and help to live with the disease. The article also mentions the new NICE guidelines and the motion from the Danish Parliament to stop classifying ME as a functional disorder.
Article here Thread here
UK Maudsley Learning Podcast Chronic Fatigue Syndrome/ME with Dr Charles Shepherd
A 1 hour interview with Hon Medical Advisor to the ME Association, Charles Shepherd covering a broad range of topics concerning ME.
Podcast here Thread here
...............
Opinion piece about the NICE ME/CFS guideline and responses
The Lancet
"New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp, Brurberg, Fink, Knoop and Wyller.
As we reported last week, the authors, all well known supporters of the biopsychosocial model of ME/CFS and CBT/GET treatments, argued that the guideline committee was biased in its review of evidence. Below are some responses:
Trial by Error by David Tuller
"The Lancet Published Whine de Coeur from Impassioned GET/CBT Defenders"
About the recent Lancet comment from Flottorp et al accusing the NICE ME guideline for relying more on ideology than science. "They are on the wrong side of a crumbling paradigm, and they sense it, and in this tendentious document they come across as dismayed, confused, and even scared."
Article here Thread here
ME/CFS skeptic
A new blog post by ME/CFS Skeptic provides and excellent detailed dissection of the arguments made by Flottorp and colleagues in their critique of the new NICE guidance in the Lancet.
Article here Thread here
Professor Jonathan Edwards, expert witness on clinical trial methodology to the NICE guideline committee, has written to the authors and included Professor Garner who has supported the article on social media. He points out that he has no vested interests, unlike the authors. 'What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons.'
Letter here
...............
Advocacy action
UK Forward ME Survey A Picture of_ME: media images of ME
As part of a project to encourage the media to use more appropriate images to illustrate articles about ME, Forward ME have set up a survey asking people to rate the suitability of 6 images used in UK media articles.
Thread with link to the survey here
UK Forward ME are asking for feedback on whether ME/CFS clinics' communications have been updated to reflect the new NICE guideline.
Thread here
....................
Coming events
New Zealand Webinar for health professionals
A practical approach to ME/CFS (Chronic Fatigue Syndrome) by Dr Cathy Stephenson - Wed 23rd Feb 7-8PM
The My HealthHub webinar series are endorsed by the Royal New Zealand College of General Practitioners (RNZCGP) and 1 CME credit can be claimed.
Details here Thread here
...............
Job vacancy
ME Research UK is advertising for a full time science writer. Closing date for applications 15th March 2022.
'Our Science Writer will hold a key position within a small but growing team of staff tasked with interpreting, explaining and contextualising research into ME/CFS in order to raise the charity’s presence and visibility'.
Details here Thread here
..................
Research
Journal of Translational Medicine
"Impaired TRPM3-dependent calcium influx and restoration using Naltrexone in natural killer cells of ME/CFS" by Eaton-Fitch et al
This team from Griffith University have previously hypothesised from small studies that ME/CFS an NK cell ion channel disorder. In this study NK cells were isolated from10 ME/CFS patients and10 matched healthy controls. They found that naltrexone restores impaired TRPM3 function in NK cells of ME/CFS patients.
Paper here Thread here
Environmental Research and Public Health
"Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS Patients" by Ting Yu Wu et al.
This preliminary study of 236 ME/CFS patients in Florida who had a history of exposure to mold in water damaged buildings found mycotoxins in the urine of 92%. The authors discuss the effects of mycotoxins on the body and suggest they may play a role in ME/CFS symptoms for some patients, and further investigations are warranted, however there was no control group comparison.
Article here Thread here
Journal of Translational Medicine
"Physiological assessment of orthostatic intolerance in chronic fatigue syndrome" by Natelson et al.
63 patients diagnosed with Fukuda criteria did a 10 minute standing lean test for orthostatic intolerance. The researchers found some patients had postural orthostatic syndrome of hypocapnia [POSH] which is normally caused by hyperventilation. Some others had postural orthostatic tachycardia syndrome (POTS) or orthostatic hypotension (OH).
Paper here Thread here
International Journal of Molecular Sciences
"Implication of Covid-19 on Erythrocytes Functionality: Red Blood Cell Biochemical Implications and Morpho-Functional Aspects" by Russo et al.
During acute Covid-19 infection severity of changes in red blood cells matched severity of illness. The authors suggest it would be helpful to track this in severely ill patients. 'Finally monitored changes in erythrocytes and blood, in general, may be one of the causes of the condition known as Long COVID.'
Paper here Thread here
Healthcare
“Is It Useful to Question the Recovery Behaviour of Patients with ME/CFS or Long COVID?” by Vink and Vink-Niese
ME/CFS patient and former insurance physician Mark Vink made a comprehensive overview of the effect of rehabilitative interventions on work-related outcomes in ME/CFS. The authors conclude that more patients are unable to work after treatment with cognitive behavior therapy and graded exercise therapy than before treatment with them.
Article here Thread here
..............
Other items of interest
Scientific American "COVID Long Haulers Are Calling Attention to Chronic Illness"
On how the scope of Long Covid is making post viral disease more visible with several mentions of ME/CFS. "It is time for medical researchers to investigate these long-contested illnesses with the full force of science's power and for medical educators to train doctors in how to effectively care for chronically ill patients".
Article here Thread here
northjersey.com "COVID could launch an epidemic of chronic fatigue syndrome, doctors warn"
The article refers to research suggesting the pandemic might more than triple the prevalence of ME. Robert Sklans from #MEAction Network says: "When we saw COVID happening, people in the ME community were some of the first to raise alarm bells that his was going to be a mass disabling event". NIH's Koroshetz says: "doctors will have to become skilled in taking care of persistent problems... The silver lining is it may increase good care for people with ME/CFS, whether from COVID or not".
Article here Thread here
New England Journal of Medicine (Supplement) "Studying Long COVID"
In this 30 minute interview (audio only, no transcript) the editors talk with Cliff Rosen, principal investigator in the NIH-funded RECOVER Initiative’s study of long Covid.
Interview here Thread here
NYT How Long Covid Exhausts the Body
On current hypotheses concerning Long Covid pathology with mentions of similarities to ME. Prof. Akiko Iwasaki, Dr. Avindra Nath and Dr. David Systrom are among the experts interviewed for the article.
Article here Thread here
Independent.ie Tackling brain fog and other nasty legacies Covid-19 has left in its wake
Article here (paywalled) Thread here
Kyodo News FEATURE: Reduced brain function, immune disorder a possibility of "long COVID"
Article here Thread here
Nature Lessons from Long COVID: working with patients to design better research
Article here Thread here
New Haven Register Long COVID fatigue may not be a heart or lung problem, Yale doctors say
Article here Thread here
uchealth People get help for a variety of confusing symptoms of long COVID
Article here Thread here
.............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 21st February 2022
News, articles and advocacy
Germany
The Deutsche Gesellschaft für ME/CFS and Long COVID Deutschland have submitted a "National Action Plan on ME/CFS and Post-COVID Syndrome" to the Federal Government. The aim of the action plan is to implement the measures mentioned in the coalition agreement and other urgently needed measures.
Article here Thread here
Doctors with ME surveyed over 600 people, mostly clinicians, who engaged in online learning about ME/CFS. Most supported the need for more medical education, research funding and better understanding of patients with ME/CFS.
Article here Thread here
Sweden Interview in a woman's magazine with the influencer Vanja Wikström whose husband Niklas is suffering from ME. She tells of how chronic disease affects their family life, of challenges and adjustments.
Article here Thread here
Literary Yard 'Bulwark: To Jane Eyre' and other poems
Three beautiful poems by Veronica Ashenhurst who suffers from severe ME.
Poems here Thread here
Norway
Psychologist, author and ME sufferer Frøydis Lilledalen has written an opinion piece for a news site about research explaining reasons behind ME patients' scepticism towards a planned study on the controversial alternative method Lightning Process.
Opinion piece here Thread here
The newspaper Klassekampen with a feature article about Emilie and the brutal reality of severe ME.
Article here (paywalled) Thread with summary here
Civil engineer and ME sufferer Benedikte Monrad-Khron has written an opinion piece for a medical newspaper about the importance of research into ME being beneficial to the patients.
Opinion piece here Thread here
The Wall Street Journal 'The Invisible Kingdom' Review: Malady Unknown'
About Meghan O'Rourke's book "The Invisible Kingdom: Reimagining Chronic Illness". "Living with chronic illness, like living with a disability, is an act of defiance against a world that would rather not see or hear you. To refuse this invisibility takes a great act of courage - a demand for better treatment from our medical system."
Article here (paywalled) Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation" by Davenport et al.
In this final article in their series on the JOSPT blog, Davenport and team suggest: 'A combination of HRM and symptom journaling will best assist patients and clinicians to track outcomes and adjust the HRM program as needed.' They suggest monitoring three key symptoms that limit the individual's function.
Article here Thread here
People News Chronicle Exercise isn't a cure-all - especially when recovering from a virus
About ME and the importance of convalescence for post viral infections. "As a highly stigmatised, under-researched condition that disrupts every single element of your waking life, let me tell you first-hand: you don’t want this illness."
Article here Thread here
................
Research
Frontiers in Medicine: Infectious Diseases - Surveillance, Prevention and Treatment
"Current Insights Into Complex Post-infection Fatigue Syndromes With Unknown Aetiology: The Case of ME/CFS" by Westermeier et al.
This editorial article is part of a research topic in the journal. It introduces topics covered in a series of articles focused on viral triggers of ME/CFS, disease-related pathomechanisms, and potential therapies. It concludes with the hope that the increase in ME/CFS cases following Sars-Cov-2 infection will lead to acceleration in ME/CFS research.
Article here Thread here
MedRxiv Preprint
"Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS" by Helliwell et al.
'Results DNA was isolated from Peripheral Blood Mononuclear Cells (PBMCs) from two patients and a healthy age/gender matched control in a longitudinal study to capture a patient relapse. [...] Severe health relapses in ME/CFS patients resulted in functionally important changes in their DNA methylomes that, while differing among patients, lead to similar compromised physiology.'
Paper here Thread here
JCI Insight
"Long-term follow-up of dynamic brain changes in patients recovered from COVID-19 without neurological manifestations" by Tian et al
34 discharged Covid-19 hospital patients without neurological manifestations were followed up for 10 months. Some brain changes such as hypoperfusion seen at 3 months had resolved at 10 months but some abnormalities remained in cases with more severe Long Covid, and may help guide clinical care.
Paper here Thread here
British Pharmacological Society
Review article: "Chronic cerebral aspects of long COVID, post-stroke syndromes and similar states share their pathogenesis and perispinal etanercept treatment logic" by A. Clark.
This article suggests various syndromes are caused by damage or infection provoked overproduction of TNF which in turn activates microglia. The author suggests a drug, etanercept would help by reducing TNF.
Article here Thread here
BMJ Paediatrics Open
“Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study” by Serafimova et al.
The research team of Esther Crawley conducted interviews with 13 children with ME/CFS about the pain they experience. The authors conclude that “pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.”
Article here Thread here
Journal of Consulting and Clinical Psychology
“Internet-based CBT for somatic symptom distress (iSOMA) in emerging adults: A randomized controlled trial” by Severin et al.
The authors conducted a trial of a guided, cognitive-behavioral internet intervention for somatic symptom distress. They claim that it is effective in reducing a broad range of persistent physical symptoms.
Article here Thread here
Journal of Psychosomatic Research
“Somatosensory amplification moderates the efficacy of internet-delivered CBT for somatic symptom distress in emerging adults: Exploratory analysis of a randomized controlled trial” by Henneman et al.
The authors analysed the results of a trial of internet-delivered cognitive-behavioral therapy (ICBT) for various persistent somatic symptoms. They claim that patients with moderate to high somatosensory amplification might benefit most from the intervention.
Article here Thread here
................
Other items of interest
National Geographic
"How COVID-19 can harm pregnancy and reproductive health"
Includes interview with Dr. Lucinda Bateman who tells why post-viral syndromes have driven her career and led her to open the Bateman Horne Center.
Article here Thread here
"As long COVID cases grow, clues emerge about who is most at risk"
Quotes Dr. Avindra Nath and mentions the research work at PolyBio Research Foundation.
Article here Thread here
International Business Times What Is Chronic Fatigue Syndrome? Overlooked Condition Shares Symptoms With Long COVID
Quotes from both Jamie Seltzer and Robert Skalns from #MEaction and says it's estimated that 1 in 10 infections may get CFS.
Article here Thread here
The Guardian How Covid changed medicine for the future
Article here Thread here
The Joe Rogan Experience Podcast Michael Osterholm
Podcast here Thread here
San Antonio TV The connection between COVID and Chronic Fatigue Syndrome
Thread with links here
VTDigger Vermonters with long Covid still face barriers to care
Article here Thread here
New Scientist Long covid - the best thing that ever happened to functional disorders
Editorial here (Paywalled) Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Germany
The Deutsche Gesellschaft für ME/CFS and Long COVID Deutschland have submitted a "National Action Plan on ME/CFS and Post-COVID Syndrome" to the Federal Government. The aim of the action plan is to implement the measures mentioned in the coalition agreement and other urgently needed measures.
Article here Thread here
Doctors with ME surveyed over 600 people, mostly clinicians, who engaged in online learning about ME/CFS. Most supported the need for more medical education, research funding and better understanding of patients with ME/CFS.
Article here Thread here
Sweden Interview in a woman's magazine with the influencer Vanja Wikström whose husband Niklas is suffering from ME. She tells of how chronic disease affects their family life, of challenges and adjustments.
Article here Thread here
Literary Yard 'Bulwark: To Jane Eyre' and other poems
Three beautiful poems by Veronica Ashenhurst who suffers from severe ME.
Poems here Thread here
Norway
Psychologist, author and ME sufferer Frøydis Lilledalen has written an opinion piece for a news site about research explaining reasons behind ME patients' scepticism towards a planned study on the controversial alternative method Lightning Process.
Opinion piece here Thread here
The newspaper Klassekampen with a feature article about Emilie and the brutal reality of severe ME.
Article here (paywalled) Thread with summary here
Civil engineer and ME sufferer Benedikte Monrad-Khron has written an opinion piece for a medical newspaper about the importance of research into ME being beneficial to the patients.
Opinion piece here Thread here
The Wall Street Journal 'The Invisible Kingdom' Review: Malady Unknown'
About Meghan O'Rourke's book "The Invisible Kingdom: Reimagining Chronic Illness". "Living with chronic illness, like living with a disability, is an act of defiance against a world that would rather not see or hear you. To refuse this invisibility takes a great act of courage - a demand for better treatment from our medical system."
Article here (paywalled) Thread here
Journal of Orthopaedic & Sports Physical Therapy
"Lessons from ME/CFS for Long COVID Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation" by Davenport et al.
In this final article in their series on the JOSPT blog, Davenport and team suggest: 'A combination of HRM and symptom journaling will best assist patients and clinicians to track outcomes and adjust the HRM program as needed.' They suggest monitoring three key symptoms that limit the individual's function.
Article here Thread here
People News Chronicle Exercise isn't a cure-all - especially when recovering from a virus
About ME and the importance of convalescence for post viral infections. "As a highly stigmatised, under-researched condition that disrupts every single element of your waking life, let me tell you first-hand: you don’t want this illness."
Article here Thread here
................
Research
Frontiers in Medicine: Infectious Diseases - Surveillance, Prevention and Treatment
"Current Insights Into Complex Post-infection Fatigue Syndromes With Unknown Aetiology: The Case of ME/CFS" by Westermeier et al.
This editorial article is part of a research topic in the journal. It introduces topics covered in a series of articles focused on viral triggers of ME/CFS, disease-related pathomechanisms, and potential therapies. It concludes with the hope that the increase in ME/CFS cases following Sars-Cov-2 infection will lead to acceleration in ME/CFS research.
Article here Thread here
MedRxiv Preprint
"Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS" by Helliwell et al.
'Results DNA was isolated from Peripheral Blood Mononuclear Cells (PBMCs) from two patients and a healthy age/gender matched control in a longitudinal study to capture a patient relapse. [...] Severe health relapses in ME/CFS patients resulted in functionally important changes in their DNA methylomes that, while differing among patients, lead to similar compromised physiology.'
Paper here Thread here
JCI Insight
"Long-term follow-up of dynamic brain changes in patients recovered from COVID-19 without neurological manifestations" by Tian et al
34 discharged Covid-19 hospital patients without neurological manifestations were followed up for 10 months. Some brain changes such as hypoperfusion seen at 3 months had resolved at 10 months but some abnormalities remained in cases with more severe Long Covid, and may help guide clinical care.
Paper here Thread here
British Pharmacological Society
Review article: "Chronic cerebral aspects of long COVID, post-stroke syndromes and similar states share their pathogenesis and perispinal etanercept treatment logic" by A. Clark.
This article suggests various syndromes are caused by damage or infection provoked overproduction of TNF which in turn activates microglia. The author suggests a drug, etanercept would help by reducing TNF.
Article here Thread here
BMJ Paediatrics Open
“Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study” by Serafimova et al.
The research team of Esther Crawley conducted interviews with 13 children with ME/CFS about the pain they experience. The authors conclude that “pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.”
Article here Thread here
Journal of Consulting and Clinical Psychology
“Internet-based CBT for somatic symptom distress (iSOMA) in emerging adults: A randomized controlled trial” by Severin et al.
The authors conducted a trial of a guided, cognitive-behavioral internet intervention for somatic symptom distress. They claim that it is effective in reducing a broad range of persistent physical symptoms.
Article here Thread here
Journal of Psychosomatic Research
“Somatosensory amplification moderates the efficacy of internet-delivered CBT for somatic symptom distress in emerging adults: Exploratory analysis of a randomized controlled trial” by Henneman et al.
The authors analysed the results of a trial of internet-delivered cognitive-behavioral therapy (ICBT) for various persistent somatic symptoms. They claim that patients with moderate to high somatosensory amplification might benefit most from the intervention.
Article here Thread here
................
Other items of interest
National Geographic
"How COVID-19 can harm pregnancy and reproductive health"
Includes interview with Dr. Lucinda Bateman who tells why post-viral syndromes have driven her career and led her to open the Bateman Horne Center.
Article here Thread here
"As long COVID cases grow, clues emerge about who is most at risk"
Quotes Dr. Avindra Nath and mentions the research work at PolyBio Research Foundation.
Article here Thread here
International Business Times What Is Chronic Fatigue Syndrome? Overlooked Condition Shares Symptoms With Long COVID
Quotes from both Jamie Seltzer and Robert Skalns from #MEaction and says it's estimated that 1 in 10 infections may get CFS.
Article here Thread here
The Guardian How Covid changed medicine for the future
Article here Thread here
The Joe Rogan Experience Podcast Michael Osterholm
Podcast here Thread here
San Antonio TV The connection between COVID and Chronic Fatigue Syndrome
Thread with links here
VTDigger Vermonters with long Covid still face barriers to care
Article here Thread here
New Scientist Long covid - the best thing that ever happened to functional disorders
Editorial here (Paywalled) Thread here
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