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News in Brief - March 2021
- Thread starter Trish
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Week beginning 1st March 2021
Articles
The Puzzle Solver David Tuller has done a Q-and-A with Tracie White, author of this book about ME sufferer Whitney Dafoe and his father Ron Davis' research into his disease. Tracie White has also written an article about the book for Stanford Medicine Scope.
Q-and-A here Stanford Medicine Scope article here Thread here
Japan "Man in Japan with rare disease calls for understanding after being slandered online"
Article in an English newspaper from Japan called The Mainichi where ME sufferer Yusuke shares his experience with discrimination and prejudice against the disease.
Article here Thread here
Sweden Article in a wellness magazine where former athlete Helena tells her story about becoming a severe ME sufferer.
Article here (in Swedish) Thread here
..............
Resources
Workwell Foundation New factsheet: "Activity Management with a Heart Rate Monitor". A single page pdf with advice for those who have not had a 2 day CPET on how to estimate your anaerobic threshold using a combination of resting heart rate plus 15 beats per minute and symptom monitoring. They advise not exceeding the limit for more than 2 minutes before resting to help avoid PEM.
Website here Factsheet here Thread here
...............
Current research projects
UK Action for ME has published a list of current studies in the UK, some of which are recruiting participants, and including a reminder to register for the DecodeME genome study.
Article here Thread here
Sweden "The ME-SH (Myalgic Encephalomyelitis in Stockholm-Harvard) Study: Structural Problems in Brainstem and Cervical Spine Cord in ME/CFS - a Case-control Study"
Due to start next month and run for 5 years, this study will include 100 people with ME/CFS and controls and will study 'prevalence of cervical obstructions, Cerebro spinal fluid (CSF) pressure and laboratory findings.'
Trial listing here Thread here
Belgium "The Influence of Epigenetic Modifications and Post-Exertional Malaise in People With ME/CFS" 2021 to 2022.
70 patients and 35 matched controls. The patients will either do a physical or cognitive challenge. 'The primary aim is to assess genetic and epigenetic mechanisms of BDNF, COMT and HDAC genes in response to exercise and the stress task'.
Trial listing here Thread here
..............
Biomedical research
International Journal of Environmental Research and Public Health
"Effects of Post-Exertional Malaise on Markers of Arterial Stiffness in Individuals with ME/CFS" by Bond et al.
In this small New Zealand study 11 patients and 11 matched controls had measures based on blood pressures and pulse waves taken before and after 2 cardiopulmanary exercise sessions with a 48 or 72 hour interval. One measure was statistically significantly different from controls in the 48 hour group after the exercise challenge. No other significant differences were found. The authors conclude: 'The findings suggest that those with ME/CFS may not experience exercise-induced vasodilation due to chronic vascular damage, which may be a contributor to the onset of post-exertional malaise.'
Paper here Thread here
Frontiers in Medicine - Infectious Diseases - Surveillance, Prevention and Treatment
"Reduced endothelial function in ME/CFS - results from open-label cyclophosphamide intervention study" by Sorland et al.
In this substudy of Fluge and Mella's open-label phase II trial “Cyclophosphamide in ME/CFS”, endothelial function was measured by Flow-mediated dilation (FMD) and Post-occlusive reactive hyperemia (PORH) at baseline and repeated after 12 months.
The abstract concludes: 'Patients with ME/CFS had reduced endothelial function affecting both large and small vessels compared to healthy controls. Changes in endothelial function did not follow clinical responses during follow-up after cyclophosphamide IV intervention.'
Paper here (provisionally accepted) Thread here
................
Other research
BMJ
"Rapid Response: Re: Updated NICE guidance on chronic fatigue syndrome" by Busse et al.
In a rapid Response on the BMJ website, Jason Busse and 10 colleagues criticize the NICE committee for ME/CFS of a “disastrous misapplication of GRADE methodology.” The list of authors includes Paul Garner, Signe Flottorp and Gordon Guyatt. Forum members Jonathan Edwards and Michiel Tack have each written a rapid response. Tack has also written a blog post that analyses the criticism by Busse and colleagues.
Rapid responses here Blog here Thread here
Medicina
“Our Evolving Understanding of ME/CFS” Friedman et al.
In this opinion piece, Kenneth Friedman, Modra Murovska, Derek Pheby and Paweł Zalewski write that “The similarity and overlap of ME/CFS and Longhaul COVID-19 symptoms suggest to us similar pathological processes.” Because of the overlap in symptoms, the authors argue that ME/CFS and Longhaul COVID-19 should be described as “Post Active Phase of Infection Syndromes (PAPIS).”
Article here Thread here
Applied Health Economics and Health Policy
“Cost‑effectiveness of Interventions for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis: A Systematic Review of Economic Evaluations.” By Cochrane et al.
The authors conducted a systematic review of papers that assessed the cost-efectiveness of CFS/ME interventions. Ten economic evaluations were found. There was evidence from three trials to support cognitive behaviour therapy (CBT) as a cost-effective treatment. Findings on CBT, however, were not uniform.
Article here Thread here
Medicina
“Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)” by Cullinan et al.
In this new EUROMENE publication each of the members commented on the (lack of) recognition ME/CFS in their home country. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result.
Article here Thread here
...............
Fundraising
Dr Keith Geraghty needs funds to enable him to continue his valuable research. "I am an unsalaried research fellow who relies on grant income. I am seeking funding to continue researching ME/CFS at the University of Manchester. I have made signficant headway over the past few years but I need your support to do even more. I am seeking crowdfunding to publish papers from existing projects and to do more work [...]". Target £35,000.
Donate here Thread here
...............
Coming events
Canada Canadian Institute of Health Research webinar 9th March
Dr Nina Muirhead 'will discuss: Diagnosis and Management of ME; The connection between ME and Long COVID; Current and Upcoming Research'.
Thread with details here
USA - Solve ME/CFS: The 5th Annual ME/CFS Advocacy Week April 18-24, 2021. 'This year, “ME/CFS & Long COVID Advocacy Day” welcomes our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in this virtual event.'
Registration here Thread with details here
................
Covid-19 and ME
UK long Covid research grants The UK National Institute for Health Research has awarded £18.5 million to 4 projects researching long Covid, including biomedical testing, symptom tracking, electronic monitoring, support services and treatments.
Details here Thread here
A Life Hidden "Seeking Peace in a World of Uncertainty"
Another excellent blog post from Naomi Whittingham. This time with reflections on the added uncertainties a pandemic brings on top of living with a long-term illness.
Article here Thread here
Sweden Great opinion piece by Agnes Arpi on how it will be impossible to dismiss Long Covid as it affects so many people at the same time, and how this new attention should also lead to better care for ME patients.
Article here (in Swedish) Thread here
Other items of interest
The Lancet "Young person with long COVID after mild disease"
Article here Thread here
Sally Howard "Long covid: let's learn from the medical profession's record with CFS/ME patients"
Article here Thread here
BBC4 "World at One"
Radio segment here (39.27-44.10) Thread here
..................
S4ME social media: Facebook, Twitter and You Tube
Articles
The Puzzle Solver David Tuller has done a Q-and-A with Tracie White, author of this book about ME sufferer Whitney Dafoe and his father Ron Davis' research into his disease. Tracie White has also written an article about the book for Stanford Medicine Scope.
Q-and-A here Stanford Medicine Scope article here Thread here
Japan "Man in Japan with rare disease calls for understanding after being slandered online"
Article in an English newspaper from Japan called The Mainichi where ME sufferer Yusuke shares his experience with discrimination and prejudice against the disease.
Article here Thread here
Sweden Article in a wellness magazine where former athlete Helena tells her story about becoming a severe ME sufferer.
Article here (in Swedish) Thread here
..............
Resources
Workwell Foundation New factsheet: "Activity Management with a Heart Rate Monitor". A single page pdf with advice for those who have not had a 2 day CPET on how to estimate your anaerobic threshold using a combination of resting heart rate plus 15 beats per minute and symptom monitoring. They advise not exceeding the limit for more than 2 minutes before resting to help avoid PEM.
Website here Factsheet here Thread here
...............
Current research projects
UK Action for ME has published a list of current studies in the UK, some of which are recruiting participants, and including a reminder to register for the DecodeME genome study.
Article here Thread here
Sweden "The ME-SH (Myalgic Encephalomyelitis in Stockholm-Harvard) Study: Structural Problems in Brainstem and Cervical Spine Cord in ME/CFS - a Case-control Study"
Due to start next month and run for 5 years, this study will include 100 people with ME/CFS and controls and will study 'prevalence of cervical obstructions, Cerebro spinal fluid (CSF) pressure and laboratory findings.'
Trial listing here Thread here
Belgium "The Influence of Epigenetic Modifications and Post-Exertional Malaise in People With ME/CFS" 2021 to 2022.
70 patients and 35 matched controls. The patients will either do a physical or cognitive challenge. 'The primary aim is to assess genetic and epigenetic mechanisms of BDNF, COMT and HDAC genes in response to exercise and the stress task'.
Trial listing here Thread here
..............
Biomedical research
International Journal of Environmental Research and Public Health
"Effects of Post-Exertional Malaise on Markers of Arterial Stiffness in Individuals with ME/CFS" by Bond et al.
In this small New Zealand study 11 patients and 11 matched controls had measures based on blood pressures and pulse waves taken before and after 2 cardiopulmanary exercise sessions with a 48 or 72 hour interval. One measure was statistically significantly different from controls in the 48 hour group after the exercise challenge. No other significant differences were found. The authors conclude: 'The findings suggest that those with ME/CFS may not experience exercise-induced vasodilation due to chronic vascular damage, which may be a contributor to the onset of post-exertional malaise.'
Paper here Thread here
Frontiers in Medicine - Infectious Diseases - Surveillance, Prevention and Treatment
"Reduced endothelial function in ME/CFS - results from open-label cyclophosphamide intervention study" by Sorland et al.
In this substudy of Fluge and Mella's open-label phase II trial “Cyclophosphamide in ME/CFS”, endothelial function was measured by Flow-mediated dilation (FMD) and Post-occlusive reactive hyperemia (PORH) at baseline and repeated after 12 months.
The abstract concludes: 'Patients with ME/CFS had reduced endothelial function affecting both large and small vessels compared to healthy controls. Changes in endothelial function did not follow clinical responses during follow-up after cyclophosphamide IV intervention.'
Paper here (provisionally accepted) Thread here
................
Other research
BMJ
"Rapid Response: Re: Updated NICE guidance on chronic fatigue syndrome" by Busse et al.
In a rapid Response on the BMJ website, Jason Busse and 10 colleagues criticize the NICE committee for ME/CFS of a “disastrous misapplication of GRADE methodology.” The list of authors includes Paul Garner, Signe Flottorp and Gordon Guyatt. Forum members Jonathan Edwards and Michiel Tack have each written a rapid response. Tack has also written a blog post that analyses the criticism by Busse and colleagues.
Rapid responses here Blog here Thread here
Medicina
“Our Evolving Understanding of ME/CFS” Friedman et al.
In this opinion piece, Kenneth Friedman, Modra Murovska, Derek Pheby and Paweł Zalewski write that “The similarity and overlap of ME/CFS and Longhaul COVID-19 symptoms suggest to us similar pathological processes.” Because of the overlap in symptoms, the authors argue that ME/CFS and Longhaul COVID-19 should be described as “Post Active Phase of Infection Syndromes (PAPIS).”
Article here Thread here
Applied Health Economics and Health Policy
“Cost‑effectiveness of Interventions for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis: A Systematic Review of Economic Evaluations.” By Cochrane et al.
The authors conducted a systematic review of papers that assessed the cost-efectiveness of CFS/ME interventions. Ten economic evaluations were found. There was evidence from three trials to support cognitive behaviour therapy (CBT) as a cost-effective treatment. Findings on CBT, however, were not uniform.
Article here Thread here
Medicina
“Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)” by Cullinan et al.
In this new EUROMENE publication each of the members commented on the (lack of) recognition ME/CFS in their home country. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result.
Article here Thread here
...............
Fundraising
Dr Keith Geraghty needs funds to enable him to continue his valuable research. "I am an unsalaried research fellow who relies on grant income. I am seeking funding to continue researching ME/CFS at the University of Manchester. I have made signficant headway over the past few years but I need your support to do even more. I am seeking crowdfunding to publish papers from existing projects and to do more work [...]". Target £35,000.
Donate here Thread here
...............
Coming events
Canada Canadian Institute of Health Research webinar 9th March
Dr Nina Muirhead 'will discuss: Diagnosis and Management of ME; The connection between ME and Long COVID; Current and Upcoming Research'.
Thread with details here
USA - Solve ME/CFS: The 5th Annual ME/CFS Advocacy Week April 18-24, 2021. 'This year, “ME/CFS & Long COVID Advocacy Day” welcomes our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in this virtual event.'
Registration here Thread with details here
................
Covid-19 and ME
UK long Covid research grants The UK National Institute for Health Research has awarded £18.5 million to 4 projects researching long Covid, including biomedical testing, symptom tracking, electronic monitoring, support services and treatments.
Details here Thread here
A Life Hidden "Seeking Peace in a World of Uncertainty"
Another excellent blog post from Naomi Whittingham. This time with reflections on the added uncertainties a pandemic brings on top of living with a long-term illness.
Article here Thread here
Sweden Great opinion piece by Agnes Arpi on how it will be impossible to dismiss Long Covid as it affects so many people at the same time, and how this new attention should also lead to better care for ME patients.
Article here (in Swedish) Thread here
Other items of interest
The Lancet "Young person with long COVID after mild disease"
Article here Thread here
Sally Howard "Long covid: let's learn from the medical profession's record with CFS/ME patients"
Article here Thread here
BBC4 "World at One"
Radio segment here (39.27-44.10) Thread here
..................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 8th March 2021
News
Norway "The course of the illness for ME patients in Norway: What are the typical courses of the illness, and what worsen or improve them?"
Summary in English of a survey by the Norwegian ME Association in 2019 with 5 822 ME patients as respondents.
Summary here Thread here
Action for ME and Solve ME/CFS Initative
From a tweet from Solve's You + ME registry: 'We're pleased to share that we're partnering with Action for ME on a post-doctoral fellowship, global advocacy + an exploration of a digital platform that connects people with ME with peer support + other resources.'
Tweet here Thread here
............
Trial by Error by David Tuller
Psychosomatics Journal Linked to PACE Authors Highlights Bias from Subjective Outcome
A recent article in the Journal of Psychosomatic Research written by its current and two former editors, defends a paper on a homeopathic treatment of CFS due to it being blinded. Tuller asks what their opinion then is of the PACE trial, particularly considering that two PACE authors are part of the journal's advisory board.
Article here Thread here
.............
Biomedical research
MedRxiv preprint
"Analysis of antibody data using Finite Mixture Models based on Scale Mixtures of Skew-Normal distributions" by: Domingues et al.
This Portugese team analysed data from samples from the UK ME/CFS biobank.
From the abstract: 'We illustrate the advantage of these alternative mixture models with a data set of 406 individuals in which antibodies against six different human herpesviruses were measured in the context of ME/CFS.' From the conclusions: 'In terms of the results concerning the example of application, there is no evidence for a different level of exposure of the patients with ME/CFS to these herpesviruses when compared to healthy controls and patients with multiple sclerosis.'
Article here Thread here
Frontiers in Medicine - Infectious Diseases preprint
Perspective article: "Ross River virus immune evasion strategies and the relevance to Post-Viral Fatigue, and ME onset" by Lidbury.
This mosquito bourne virus endemic in Australia is known to trigger PVFS and ME. The author discusses possible connections between RRV immune evasion and biomedical research findings for ME.
Article here Thread here
Open Medicine Foundation Ronald Tompkins, Chief Medical Office for OMF, has an update on their multi-year study to examine the potential transition of Post-COVID Syndrome to ME/CFS.
Article here Thread here
.............
Other research
Healthcare
“Three cases of severe ME/CFS in adults” by Williams & Isaacson-Barash.
In this paper Leah Williams and Carol Isaacson-Barash from the Massachusetts ME/CFS & FM Association present the cases of three ME/CFS patients “to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.”
Article here Thread here
Royal United Hospitals Bath
The ME/CFS centre at Bath is planning to test a new questionnaire for children with ME/CFS. The study is called POMME: Paediatric Outcome Measure ME. The authors plan to ask 313 young people with ME/CFS to complete the new questionnaire to work out which questions we can remove to make it shorter. They will then test the short-form questionnaire works in a second group of 313 children with ME/CFS at three separate times to see if the new questionnaire can measure change or improvement from treatment.
Article here Thread here
BMJ Open
“Long COVID and the role of physical activity: a qualitative study” by Humphreys et al.
The authors conducted interviews with 18 patients suffering from long COVID with a particular focus on the role of physical activity. Their findings “reflect concerns regarding the potential risk of long-term damage associated with postexertion malaise and PA [physical activity].”
Article here Thread here
David Marks, psychologist, writer and Editor of the Journal of Health Psychology has published several blog post where he critically examines the evidence of “The Wessely School approach to ME/CFS and MUS.” A discussion of these blog posts can be found in this thread.
ME/CFS and the Wessely School
ME/CFS and treatment harms
ME/CFS and deconditioning
ME/CFS and biased attention
ME/CFS and unhelpful beliefs
ME/CFS as a Breakdown in Homeostasis
..............
Coming Events
New Zealand Lecture: "The PACE trial for chronic fatigue syndrome: Lessons for clinical psychological science" by Dr Carolyn Wilshire.
Dr Wilshire was lead author on the reanalysis of the PACE data. The talk will include the problems with PACE, the reanalysis, and the implications for psychological research.
Friday March 27, 12-1pm, Victoria University of Wellington School of Psychology. It may be available on Zoom and recorded.
Thread with details here
..............
Covid-19 and ME
Sweden The patient organisations for EDS, Fibromyalgia and ME/CFS have written an opinion piece where they express happiness for the attention towards Long Covid while calling for better care for their patient groups as well.
Opinion piece here (in Swedish) Thread here
Long Covid Alliance Science for ME and the UK ME Association are now members of the recently formed Long Covid Alliance. This group has over 50 ME/CFS and Long Covid organisations.
MEA article here Thread here
Guardian letter UK Professors Peter White (PACE trial lead author) and Paul Garner and Dr Alastair Miller have written a letter headed 'Long Covid and graded exercise therapy' in which they claim GET is an effective treatment for ME/CFS and state that 'no trials of graded exercise have shown harm to patients'. They say people with Long Covid should not be discouraged from GET treatment. The MEA has published a rebuttal on their website, quoting the draft ME/CFS NICE guideline, and recommending rest, convalescence and cautious introduction of activity within the person's energy envelope.
Letter here MEA statement here Physios for ME twitter thread here Thread here
JACC Case Reports
"Long-Haul Post–COVID-19 Symptoms Presenting as a Variant of Postural Orthostatic Tachycardia Syndrome: The Swedish Experience" by Johansson et al.
A case study of 3 patients at a Swedish clinic describing their diagnosis and treatment.
Article here Thread here
Vox Long Covid isn't as unique as we thought
This thorough article about post infectious disease, including Long Covid and ME, has interviews with several patient advocates like Jamie Seltzer from ME Action and researchers as Amy Proal who says among other: "If Covid didn't cause chronic symptoms to occur in some people, it would be the only virus that didn't do that".
Article here Thread here
CNN A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers
Interview with Ron Davis by Ryan Prior.
Article here Thread here
The Mainichi Japanese experts suspect neuroimmune disease causing pain, fatigue as COVID-19 aftereffect
Article discussing link between Long Covid and ME/CFS.
Article here Thread here
Other items of interest
The Atlantic "Unlocking the Mysteries of Long COVID"
Article here Thread here
Bloomberg "The Long Covid Picture Is Stark. Why?"
Article here Thread here
California Health Online "For Covid 'Long Haulers,', Battling for Disability Adds Aggravation to Exhaustion" by David Tuller
Article here Thread here
Japan Article on ME/CFS as possible sequela of corona
Thread with links here
BBC "Long Covid: Warning over combining ME treatment"
Article here Thread here
BBC "Long Covid patients 'told to go away by GPs'"
Article here Thread here
itv "Living with long Covid: 'I can't work, I can't be a mum, I can't be a partner - I feel useless'"
Article here Thread here
..............
S4ME social media: Facebook, Twitter and You Tube
News
Norway "The course of the illness for ME patients in Norway: What are the typical courses of the illness, and what worsen or improve them?"
Summary in English of a survey by the Norwegian ME Association in 2019 with 5 822 ME patients as respondents.
Summary here Thread here
Action for ME and Solve ME/CFS Initative
From a tweet from Solve's You + ME registry: 'We're pleased to share that we're partnering with Action for ME on a post-doctoral fellowship, global advocacy + an exploration of a digital platform that connects people with ME with peer support + other resources.'
Tweet here Thread here
............
Trial by Error by David Tuller
Psychosomatics Journal Linked to PACE Authors Highlights Bias from Subjective Outcome
A recent article in the Journal of Psychosomatic Research written by its current and two former editors, defends a paper on a homeopathic treatment of CFS due to it being blinded. Tuller asks what their opinion then is of the PACE trial, particularly considering that two PACE authors are part of the journal's advisory board.
Article here Thread here
.............
Biomedical research
MedRxiv preprint
"Analysis of antibody data using Finite Mixture Models based on Scale Mixtures of Skew-Normal distributions" by: Domingues et al.
This Portugese team analysed data from samples from the UK ME/CFS biobank.
From the abstract: 'We illustrate the advantage of these alternative mixture models with a data set of 406 individuals in which antibodies against six different human herpesviruses were measured in the context of ME/CFS.' From the conclusions: 'In terms of the results concerning the example of application, there is no evidence for a different level of exposure of the patients with ME/CFS to these herpesviruses when compared to healthy controls and patients with multiple sclerosis.'
Article here Thread here
Frontiers in Medicine - Infectious Diseases preprint
Perspective article: "Ross River virus immune evasion strategies and the relevance to Post-Viral Fatigue, and ME onset" by Lidbury.
This mosquito bourne virus endemic in Australia is known to trigger PVFS and ME. The author discusses possible connections between RRV immune evasion and biomedical research findings for ME.
Article here Thread here
Open Medicine Foundation Ronald Tompkins, Chief Medical Office for OMF, has an update on their multi-year study to examine the potential transition of Post-COVID Syndrome to ME/CFS.
Article here Thread here
.............
Other research
Healthcare
“Three cases of severe ME/CFS in adults” by Williams & Isaacson-Barash.
In this paper Leah Williams and Carol Isaacson-Barash from the Massachusetts ME/CFS & FM Association present the cases of three ME/CFS patients “to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.”
Article here Thread here
Royal United Hospitals Bath
The ME/CFS centre at Bath is planning to test a new questionnaire for children with ME/CFS. The study is called POMME: Paediatric Outcome Measure ME. The authors plan to ask 313 young people with ME/CFS to complete the new questionnaire to work out which questions we can remove to make it shorter. They will then test the short-form questionnaire works in a second group of 313 children with ME/CFS at three separate times to see if the new questionnaire can measure change or improvement from treatment.
Article here Thread here
BMJ Open
“Long COVID and the role of physical activity: a qualitative study” by Humphreys et al.
The authors conducted interviews with 18 patients suffering from long COVID with a particular focus on the role of physical activity. Their findings “reflect concerns regarding the potential risk of long-term damage associated with postexertion malaise and PA [physical activity].”
Article here Thread here
David Marks, psychologist, writer and Editor of the Journal of Health Psychology has published several blog post where he critically examines the evidence of “The Wessely School approach to ME/CFS and MUS.” A discussion of these blog posts can be found in this thread.
ME/CFS and the Wessely School
ME/CFS and treatment harms
ME/CFS and deconditioning
ME/CFS and biased attention
ME/CFS and unhelpful beliefs
ME/CFS as a Breakdown in Homeostasis
..............
Coming Events
New Zealand Lecture: "The PACE trial for chronic fatigue syndrome: Lessons for clinical psychological science" by Dr Carolyn Wilshire.
Dr Wilshire was lead author on the reanalysis of the PACE data. The talk will include the problems with PACE, the reanalysis, and the implications for psychological research.
Friday March 27, 12-1pm, Victoria University of Wellington School of Psychology. It may be available on Zoom and recorded.
Thread with details here
..............
Covid-19 and ME
Sweden The patient organisations for EDS, Fibromyalgia and ME/CFS have written an opinion piece where they express happiness for the attention towards Long Covid while calling for better care for their patient groups as well.
Opinion piece here (in Swedish) Thread here
Long Covid Alliance Science for ME and the UK ME Association are now members of the recently formed Long Covid Alliance. This group has over 50 ME/CFS and Long Covid organisations.
MEA article here Thread here
Guardian letter UK Professors Peter White (PACE trial lead author) and Paul Garner and Dr Alastair Miller have written a letter headed 'Long Covid and graded exercise therapy' in which they claim GET is an effective treatment for ME/CFS and state that 'no trials of graded exercise have shown harm to patients'. They say people with Long Covid should not be discouraged from GET treatment. The MEA has published a rebuttal on their website, quoting the draft ME/CFS NICE guideline, and recommending rest, convalescence and cautious introduction of activity within the person's energy envelope.
Letter here MEA statement here Physios for ME twitter thread here Thread here
JACC Case Reports
"Long-Haul Post–COVID-19 Symptoms Presenting as a Variant of Postural Orthostatic Tachycardia Syndrome: The Swedish Experience" by Johansson et al.
A case study of 3 patients at a Swedish clinic describing their diagnosis and treatment.
Article here Thread here
Vox Long Covid isn't as unique as we thought
This thorough article about post infectious disease, including Long Covid and ME, has interviews with several patient advocates like Jamie Seltzer from ME Action and researchers as Amy Proal who says among other: "If Covid didn't cause chronic symptoms to occur in some people, it would be the only virus that didn't do that".
Article here Thread here
CNN A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers
Interview with Ron Davis by Ryan Prior.
Article here Thread here
The Mainichi Japanese experts suspect neuroimmune disease causing pain, fatigue as COVID-19 aftereffect
Article discussing link between Long Covid and ME/CFS.
Article here Thread here
Other items of interest
The Atlantic "Unlocking the Mysteries of Long COVID"
Article here Thread here
Bloomberg "The Long Covid Picture Is Stark. Why?"
Article here Thread here
California Health Online "For Covid 'Long Haulers,', Battling for Disability Adds Aggravation to Exhaustion" by David Tuller
Article here Thread here
Japan Article on ME/CFS as possible sequela of corona
Thread with links here
BBC "Long Covid: Warning over combining ME treatment"
Article here Thread here
BBC "Long Covid patients 'told to go away by GPs'"
Article here Thread here
itv "Living with long Covid: 'I can't work, I can't be a mum, I can't be a partner - I feel useless'"
Article here Thread here
..............
S4ME social media: Facebook, Twitter and You Tube
Week beginning 15th March 2021
News and articles
Emerge Australia has published its strategic plan for 2021 to 2024.
Key aims include ensuring good guidelines, ongoing efforts on research (including the biobank) and education.
PDF document here Thread here
Australia Daniel Missailidis, ME/CFS researcher, is a finalist in the National Protective Services Health and Wellbeing Award category in the Young Achievers Awards. You can vote daily until 12th April.
Vote here Thread here
UK DecodeME Details of the Patient and Public Involvement Steering Group, Management groups and the Scientific Advisory Board have been updated on the website.
Details here Thread here
Canada "A Conversation About Myalgic Encephalomyelitis"
A recording of the March 9th webinar featuring Dr. Nina Muirhead is now available on YouTube. This webinar discusses diagnosis and management of ME, the connection between ME and Long COVID, and current and upcoming research.
Video here Thread here
USA Solve M.E. video: "Advocacy in Action"
This video is part of a series highlighting the impact advocacy has on government and on the lives of people suffering from ME/CFS.
Video here Thread here
UK i news article "Women are still branded ‘hysterical’ because of chronic illnesses which are under-researched and under-funded" by Sarah Graham. Includes comments from Professor Julia Newton on ME, and mentions DecodeME.
Article here Thread here
David Marks, psychologist, writer and editor of the Journal of Health Psychology has published several new blog post on ME/CFS that criticize research into cognitive behaviour therapy (CBT) and the Lightning Process.
ME/CFS and the Lightning Process, Thread here
ME/CFS and the SMILE trial, Thread here
ME/CFS and CBT – a basic error, Thread here
.............
Research news
Solve M.E. has partnered with the Iris Cantor Women's Health Center of UCLA (University of California, Los Angeles) on a research study looking at brain stimulation in ME/CFS patients.
Announcement here Thread here
USA The NIH has awarded a $2.5M R01 grant to Drs Liisa Selin and Anna Gil for their work on altered T cells in ME/CFS. This follows their 2019 Ramsay award from Solve ME with which they obtained pilot data.
NIH report here Press release here Thread here
..............
Other research
Preprints (not yet peer reviewed)
"Medical School Education on Myalgic Encephalomyelitis" by Muirhead et al.
22 of the 34 UK Medical schools responded to a questionnaire. 59% teach ME/CFS, but none gave details of the what is taught. The authors conclude: 'UK medical school teaching in ME/CFS is shown to be inadequate.'
Article here Thread here
Journal of Psychosomatic Research
“An exploratory study of discrepancies between objective and subjective measurement of the physical activity level in female patients with chronic fatigue syndrome” by Vergauwen et al.
In this Belgian study on 66 ME/CFS patients, the authors report that there is only a weak association between an activity diary and the data obtained by an accelerometer, worn for 6 consecutive days.
Article here Thread here
Journal of Women's Health
“Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health” by Art Mirin.
This study analyzes the funding by the National Institutes of Health (NIH) adjusted for disease burden. The author concludes that “in nearly three-quarters of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded.”
Article here Thread here
National Institutes for Health Research (NIHR)
“People with chronic fatigue syndrome want to be taken seriously and to receive personalised, empathetic care” by Ridge et al.
In this overview published on the NIHR website, the authors summarize the findings of their meta-analysis of 47 studies that explored the views of people with ME/CFS. They conclude that ME/CFS patients often feel invisible and not believed, that they experience a difficult relationship with healthcare professionals and that they desire person-centred care.
Article here Thread here
...............
Coming Events
Solve M.E. Advocacy Week this year is Sunday, April 18, 2021 to Saturday, April 24, 2021. The keystone event is Advocacy Day on Tuesday, April 20. This virtual event connects you directly with your members of Congress using personalized online conversations. Registration deadline is March 23.
Register here Thread here
#MEAction On Thursday, March 25, #MEAction will host a press conference "to educate the media on how ME/CFS fits into the Long COVID picture." More details to come.
Announcement here Thread here
NIH The NIH will hold a telebriefing about ME/CFS research on March 30, 2021, from 2:00-3:00 pm Eastern Time. No pre-registration required.
Announcement here Thread here
Canada Webinar in French with Dr. Alain Moreau, April 2.
'Studying sequelae post COVID and the risk of developing ME'.
Thread with details here
...............
Covid-19 and ME
Journal of Orthopaedic & Sports Physical Therapy
JOSPT blogs: "We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID" by Davenport et al.
The Workwell team draw attention to the similarities in symptoms reported by people with long Covid at 6 months and the symptoms of ME/CFS, including fatigue, post exertional malaise and cognitive dysfunction. They highlight the mistakes made with ME/CFS including not listening to patients, mischaracterisation as psychological, and late diagnosis. They urge care in prescribing exercise, recommending pacing, and symptom and heart rate monitoring.
Article here Thread here
UK National Institute of Health Research (NIHR) part 2 of a publication called 'Living with Covid-19' reviews recent research on long Covid. It recognises similarities with ME/CFS for some patients and recommends care in prescribing exercise, quoting the draft ME/CFS guideline removal of GET.
Article here Thread here
Trial By Error by David Tuller "Biopsychosocial Brigades Seek Traction with Long Covid".
On different approaches to Long Covid in US and UK, and how some researchers from the BPS field are now positioning themselves for research into Long Covid. "Studies of all sorts of treatments for long Covid are of course warranted. However, the investigators responsible for much of the body of biopsychosocial ME/CFS research do not appear competent enough or knowledgeable enough about legitimate methodology and appropriate ethics to be entrusted with such an important mission."
Article here Thread here
VICE "The Medical System Should Have Been Prepared for Long COVID"
Long article written by associate professor of religious studies, Alan Levinovitz. It looks into how the concept of MUS and neglect of ME/CFS have been standing in the way of progress in medicine that could have made us better prepared for Long Covid. Among the people interviewed are David Tuller, Diane O´Leary, Jon Stone, Julie Rehmeyer and Jen Brea.
David Tuller has written a very good commentary to the article at Virology blog titled "Another Excellent Read on Long Covid, ME/CFS and Medically Unexplained Symptoms"
Vice article here David Tuller's comment here Thread here
Inside Sources Long COVID Has A Baffling Sister:ME/CFS
An opinion piece by Llewellyn King on similarities between Long Covid and ME/CFS. He shares from his thoughts and knowledge after having covered ME/CFS for over a decade. "My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease."
Article here Thread here
SolveCFS "Learning from the Past: The Long-Term Consequences of COVID-19"
"In this presentation, Solve M.E. President and CEO Oved Amitay and Dr. Anthony L. Komaroff discuss the potential impact of Long COVID on healthcare systems and the global economy, and how COVID long haulers, the ME/CFS community and other complex, chronic disease communities can join forces for progress in the study, understanding and management of Long COVID." Duration: 12.47 min.
Youtube video here Thread here
Guardian letters Two good responses to the letter we reported last week that recommended graded exercise therapy for Long Covid. Dr Charles Shepherd of the ME Association, points out that GET is no longer recommended for ME/CFS by NICE and patients report harm. He recommends 'a period of good old fashioned convalescence' at the start of Long Covid, and then 'gradual, flexible and cautious increases in physical and mental activity'.
An excellent letter from Physios for ME and Long Covid Physios was not published. It can be read on the Physios for ME website.
Letters here Physios for ME here Thread here
Other items of interest
TIME "A Year Into the Pandemic, Long COVID Is Still Burdening Patients - and Their Caregivers"
Article here Thread here
USNEWS "They Got COVID-19. Months Later, They're Still Sick. Who are the COVID Long Haulers?
Article here Thread here
NYT "Long Covid Is Not Rare. It's a Health Crisis" Oped by Fiona Lowenstein and Hannah Davis
Article here Thread here
Pharma Technology Focus "Long Covid: could chronic fatigue syndrome be taken seriously at last?"
Article here Thread here
Health Leaders Media "Long Covid Alliance launched to help Coronavirus 'Long Haulers'".
Article here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
News and articles
Emerge Australia has published its strategic plan for 2021 to 2024.
Key aims include ensuring good guidelines, ongoing efforts on research (including the biobank) and education.
PDF document here Thread here
Australia Daniel Missailidis, ME/CFS researcher, is a finalist in the National Protective Services Health and Wellbeing Award category in the Young Achievers Awards. You can vote daily until 12th April.
Vote here Thread here
UK DecodeME Details of the Patient and Public Involvement Steering Group, Management groups and the Scientific Advisory Board have been updated on the website.
Details here Thread here
Canada "A Conversation About Myalgic Encephalomyelitis"
A recording of the March 9th webinar featuring Dr. Nina Muirhead is now available on YouTube. This webinar discusses diagnosis and management of ME, the connection between ME and Long COVID, and current and upcoming research.
Video here Thread here
USA Solve M.E. video: "Advocacy in Action"
This video is part of a series highlighting the impact advocacy has on government and on the lives of people suffering from ME/CFS.
Video here Thread here
UK i news article "Women are still branded ‘hysterical’ because of chronic illnesses which are under-researched and under-funded" by Sarah Graham. Includes comments from Professor Julia Newton on ME, and mentions DecodeME.
Article here Thread here
David Marks, psychologist, writer and editor of the Journal of Health Psychology has published several new blog post on ME/CFS that criticize research into cognitive behaviour therapy (CBT) and the Lightning Process.
ME/CFS and the Lightning Process, Thread here
ME/CFS and the SMILE trial, Thread here
ME/CFS and CBT – a basic error, Thread here
.............
Research news
Solve M.E. has partnered with the Iris Cantor Women's Health Center of UCLA (University of California, Los Angeles) on a research study looking at brain stimulation in ME/CFS patients.
Announcement here Thread here
USA The NIH has awarded a $2.5M R01 grant to Drs Liisa Selin and Anna Gil for their work on altered T cells in ME/CFS. This follows their 2019 Ramsay award from Solve ME with which they obtained pilot data.
NIH report here Press release here Thread here
..............
Other research
Preprints (not yet peer reviewed)
"Medical School Education on Myalgic Encephalomyelitis" by Muirhead et al.
22 of the 34 UK Medical schools responded to a questionnaire. 59% teach ME/CFS, but none gave details of the what is taught. The authors conclude: 'UK medical school teaching in ME/CFS is shown to be inadequate.'
Article here Thread here
Journal of Psychosomatic Research
“An exploratory study of discrepancies between objective and subjective measurement of the physical activity level in female patients with chronic fatigue syndrome” by Vergauwen et al.
In this Belgian study on 66 ME/CFS patients, the authors report that there is only a weak association between an activity diary and the data obtained by an accelerometer, worn for 6 consecutive days.
Article here Thread here
Journal of Women's Health
“Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health” by Art Mirin.
This study analyzes the funding by the National Institutes of Health (NIH) adjusted for disease burden. The author concludes that “in nearly three-quarters of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded.”
Article here Thread here
National Institutes for Health Research (NIHR)
“People with chronic fatigue syndrome want to be taken seriously and to receive personalised, empathetic care” by Ridge et al.
In this overview published on the NIHR website, the authors summarize the findings of their meta-analysis of 47 studies that explored the views of people with ME/CFS. They conclude that ME/CFS patients often feel invisible and not believed, that they experience a difficult relationship with healthcare professionals and that they desire person-centred care.
Article here Thread here
...............
Coming Events
Solve M.E. Advocacy Week this year is Sunday, April 18, 2021 to Saturday, April 24, 2021. The keystone event is Advocacy Day on Tuesday, April 20. This virtual event connects you directly with your members of Congress using personalized online conversations. Registration deadline is March 23.
Register here Thread here
#MEAction On Thursday, March 25, #MEAction will host a press conference "to educate the media on how ME/CFS fits into the Long COVID picture." More details to come.
Announcement here Thread here
NIH The NIH will hold a telebriefing about ME/CFS research on March 30, 2021, from 2:00-3:00 pm Eastern Time. No pre-registration required.
Announcement here Thread here
Canada Webinar in French with Dr. Alain Moreau, April 2.
'Studying sequelae post COVID and the risk of developing ME'.
Thread with details here
...............
Covid-19 and ME
Journal of Orthopaedic & Sports Physical Therapy
JOSPT blogs: "We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID" by Davenport et al.
The Workwell team draw attention to the similarities in symptoms reported by people with long Covid at 6 months and the symptoms of ME/CFS, including fatigue, post exertional malaise and cognitive dysfunction. They highlight the mistakes made with ME/CFS including not listening to patients, mischaracterisation as psychological, and late diagnosis. They urge care in prescribing exercise, recommending pacing, and symptom and heart rate monitoring.
Article here Thread here
UK National Institute of Health Research (NIHR) part 2 of a publication called 'Living with Covid-19' reviews recent research on long Covid. It recognises similarities with ME/CFS for some patients and recommends care in prescribing exercise, quoting the draft ME/CFS guideline removal of GET.
Article here Thread here
Trial By Error by David Tuller "Biopsychosocial Brigades Seek Traction with Long Covid".
On different approaches to Long Covid in US and UK, and how some researchers from the BPS field are now positioning themselves for research into Long Covid. "Studies of all sorts of treatments for long Covid are of course warranted. However, the investigators responsible for much of the body of biopsychosocial ME/CFS research do not appear competent enough or knowledgeable enough about legitimate methodology and appropriate ethics to be entrusted with such an important mission."
Article here Thread here
VICE "The Medical System Should Have Been Prepared for Long COVID"
Long article written by associate professor of religious studies, Alan Levinovitz. It looks into how the concept of MUS and neglect of ME/CFS have been standing in the way of progress in medicine that could have made us better prepared for Long Covid. Among the people interviewed are David Tuller, Diane O´Leary, Jon Stone, Julie Rehmeyer and Jen Brea.
David Tuller has written a very good commentary to the article at Virology blog titled "Another Excellent Read on Long Covid, ME/CFS and Medically Unexplained Symptoms"
Vice article here David Tuller's comment here Thread here
Inside Sources Long COVID Has A Baffling Sister:ME/CFS
An opinion piece by Llewellyn King on similarities between Long Covid and ME/CFS. He shares from his thoughts and knowledge after having covered ME/CFS for over a decade. "My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease."
Article here Thread here
SolveCFS "Learning from the Past: The Long-Term Consequences of COVID-19"
"In this presentation, Solve M.E. President and CEO Oved Amitay and Dr. Anthony L. Komaroff discuss the potential impact of Long COVID on healthcare systems and the global economy, and how COVID long haulers, the ME/CFS community and other complex, chronic disease communities can join forces for progress in the study, understanding and management of Long COVID." Duration: 12.47 min.
Youtube video here Thread here
Guardian letters Two good responses to the letter we reported last week that recommended graded exercise therapy for Long Covid. Dr Charles Shepherd of the ME Association, points out that GET is no longer recommended for ME/CFS by NICE and patients report harm. He recommends 'a period of good old fashioned convalescence' at the start of Long Covid, and then 'gradual, flexible and cautious increases in physical and mental activity'.
An excellent letter from Physios for ME and Long Covid Physios was not published. It can be read on the Physios for ME website.
Letters here Physios for ME here Thread here
Other items of interest
TIME "A Year Into the Pandemic, Long COVID Is Still Burdening Patients - and Their Caregivers"
Article here Thread here
USNEWS "They Got COVID-19. Months Later, They're Still Sick. Who are the COVID Long Haulers?
Article here Thread here
NYT "Long Covid Is Not Rare. It's a Health Crisis" Oped by Fiona Lowenstein and Hannah Davis
Article here Thread here
Pharma Technology Focus "Long Covid: could chronic fatigue syndrome be taken seriously at last?"
Article here Thread here
Health Leaders Media "Long Covid Alliance launched to help Coronavirus 'Long Haulers'".
Article here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 22nd March 2021
News and media
Sweden The Swedish government has announced that it's assigning the Social Insurance Agency and the National Board of Health and Welfare to "further develop the health insurance system in collaboration with the healthcare system". In the announcement it's written that through this addition, the government wants to ensure that the measures are implemented to increase safety for patients with ME/CFS, post Covid or other symptom-based diagnosis.
Announcement here Thread here
Sveriges Radio has a related 4 minutes segment where ME sufferer Anna-Carin talks about the current frustrating situation in not receiving necessary help from the Social Insurance Agency.
Radio segment here Thread here
ME/CFS Alert Episode 124: Interview with Oved Amitay
Lewellyn King talks with Oved Amitay, CEO of the Solve ME/CFS Initiative, about research funded by the organization's Ramsey Grant Program and their You + ME Registry and Biobank. Duration: 23 minutes
Video here Thread here
Germany
The government factions in the Bavarian state parliament have introduced a motion on ME/CFS. The motion includes research at universities, improving the care for ME/CFS patients and informing the general public. The motion also mentions that ME/CFS is sometimes wrongly classified as a psychosomatic condition.
Info here Thread here
David Marks "Dog whistle medicine and disability denial". In this new blog post, David Marks, the editor of Health Psychology examines the corporate connections of the Wessely School with the insurance industry.
Article here Thread here
............
Biomedical research news
The Netherlands The Dutch Minister of Medical Care and Sport, Tamara van Ark, intends to ask ZonMw to carry out a biomedical research programme on ME/CFS. This was stated in a letter to the Dutch House of Representatives sent by Van Ark on the 23rd of March. There will be 28.5 million euros available to carry out a research programme with a duration of 10 years.
Article here Thread here
Emerge Australia article "Research Interview: Professor Ken Walder" by Jason Murphy. Walder, Chair of Metabolic Diseases at Deakin University, is an experienced researcher new to ME/CFS. The title of his NHMRC grant is "Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS". He plans to create muscle and brain tissue from stem cells. "After Walder and his team learn how to stress and dysregulate ME/CFS cells, the grant will fund the use of 1300 well-known, off-patent drugs to see which is best at restoring the cells to looking like healthy control cells."
Article here Thread here
Germany An article on the website of the University of Würzburg mentions that ME/CFS researcher Bhupesh Prusty, has obtained funding from the Amar Foundation and ME Research UK, reaching $900,000 in total.
Article here Thread here
............
Research
MedRxiv preprint (not yet peer reviewed)
"Statistical challenges of investigating a disease with a complex diagnosis" by Malato et al.
Data from 275 patients diagnosed with ME/CFS referred to the UK ME/CFS biobank were analysed according to CDC (Fukuda), IOM, CCC, and ICC criteria. 62.9% had a positive diagnosis across all the four case definitions, with percentages ranging from 97.8% Fukuda to 77.5% ICC.
The authors also analysed symptom profiles, and modelled statistically and through simulation possible impact of misclassification on an association analysis. They recommend 'a strong collaboration between these researchers and biostatisticians who have in principle the technical skills needed'.
Article here Thread here
Health Expectations
“'Reluctant pioneer': A qualitative study of doctors' experiences as patients with long COVID” by Taylor et al.
The authors, which include Carolyn Chew-Graham, conducted interviews with 13 doctors experiencing persistent symptoms following COVID-19. One participated noted how “a number of us on the group have said how ashamed we are of some of the attitudes we’ve had towards people, and lack of empathy… This concept of being irritated by patients when they’re not really pleased when something comes back normal.”
Article here Thread here
BMJ Case Reports
“Recovery from refractory chronic fatigue syndrome with CBT and modafinil” by Garg et al.
In this case report, three patients with ‘treatment-resistant’ CFS that were subsequently treated with modafinil in combination with CBT, were retrospectively reviewed. The authors conclude modafinil, “to be a potentially useful potentiating agent when added to CBT.”
Article here Thread here
MedRxiv preprint (not yet peer reviewed)
"Functional and microstructural brain abnormalities, fatigue, and cognitive dysfunction after mild COVID-19" Silva et al.
fMRI scans of the brains of 87 non-hospitalized recovered individuals 54 days after the laboratory confirmation of COVID-19 showed some 'cerebral white matter alterations' that correlated with cognitive symptoms, and 'severely disrupted brain hyperconnectivity and loss of resting-state networks specificity.'
Paper here Thread here
Preprints
"Listening to Long COVID: Epistemic Injustice and COVID-19 morbidity" by de Jesus et al.
'Despite certain differences from established chronic conditions, Long COVID can assist in understanding the struggles and mitigating the injustices faced by similar populations.' ME/CFS is included in conditions discussed.
Article here Thread here
.............
Coming events
Long COVID Alliance Webinar: "POTS and Dysautonomia in Longhaul COVID: Diagnosis, Treatment and Current Research" 7th April.
Details here Thread here
UK DecodeME webinar 6:00–6:45pm Thursday 15 April.
'Management Group Q&A webinar, which focuses specifically on our recruitment process, so that people wanting to take part in DecodeME know what to expect.'
Details here Thread here
...............
Job opportunities
UK Action for ME has 3 posts with application deadlines this week: Research Officer, Children and Young People's Advocacy Officer, and Advocacy Officer.
Details here Thread here
...............
Fundraising
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS, including on the PACE trial and on the negative impact of the psychological model of ME/CFS. So far about £9,500 has been raised of the target £25,000 to enable him to continue this work.
Details and donation here Thread here
....................
Covid-19 and ME
Medscape COVID-19 'Long-Haul' Symptoms Overlap With ME/CFS
Article is based on a recent press briefing by MEAction on an increasing number of Long Covid patients meeting diagnostic criteria for ME/CFS. Includes quotes from Anthony Komaroff, Lucinda Bateman and Avindra Nath.
Article here Thread here
Byline Times ME & LONG COVID When Will Our Exhausted Cries Be Heard?
"Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power"
Article here Thread here
Trial by Error by David Tuller "Clueless Wall Street Journal Op-Ed Endorses PACE as the "Prevailing View" Among Docs"
A critical view on an opinion piece from a resident psychiatrist suggesting a psychogenic explanation for both Long Covid and ME/CFS. Tuller describes the piece as "breathtakingly ill-informed".
Article here Thread here
USA - NPR WHYY The Aftermath of Viruses
This 49 minutes programme on post viral illness has a segment titled "How COVID long-haulers might renew the focus on chronic fatigue syndrome" that interviews Leonard Jason about ME.
Whole programme here Segment with Jason here (8 minutes) Thread here
Other items of interest
COVID-19 working group New York "Chronic injustice: Centering equitable health care and policies for Covid-19 and other chronic conditions"
Report here Thread here
The BMJ Opinion "Marija Pantelic and Nisreen Alwan: The stigma is real for people living with long Covid"
Opinion piece here Thread here
The Guardian "Women are more susceptible to long Covid, but will we listen to them?
Article here Thread here
Los Angeles Times "Cases of 'Long COVID' frustrate patients, puzzle scientists"
Article here Thread here
CNN "Doctor: My long-Covid patient's stories of recovery sound familiar to me"
Opinion piece here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
News and media
Sweden The Swedish government has announced that it's assigning the Social Insurance Agency and the National Board of Health and Welfare to "further develop the health insurance system in collaboration with the healthcare system". In the announcement it's written that through this addition, the government wants to ensure that the measures are implemented to increase safety for patients with ME/CFS, post Covid or other symptom-based diagnosis.
Announcement here Thread here
Sveriges Radio has a related 4 minutes segment where ME sufferer Anna-Carin talks about the current frustrating situation in not receiving necessary help from the Social Insurance Agency.
Radio segment here Thread here
ME/CFS Alert Episode 124: Interview with Oved Amitay
Lewellyn King talks with Oved Amitay, CEO of the Solve ME/CFS Initiative, about research funded by the organization's Ramsey Grant Program and their You + ME Registry and Biobank. Duration: 23 minutes
Video here Thread here
Germany
The government factions in the Bavarian state parliament have introduced a motion on ME/CFS. The motion includes research at universities, improving the care for ME/CFS patients and informing the general public. The motion also mentions that ME/CFS is sometimes wrongly classified as a psychosomatic condition.
Info here Thread here
David Marks "Dog whistle medicine and disability denial". In this new blog post, David Marks, the editor of Health Psychology examines the corporate connections of the Wessely School with the insurance industry.
Article here Thread here
............
Biomedical research news
The Netherlands The Dutch Minister of Medical Care and Sport, Tamara van Ark, intends to ask ZonMw to carry out a biomedical research programme on ME/CFS. This was stated in a letter to the Dutch House of Representatives sent by Van Ark on the 23rd of March. There will be 28.5 million euros available to carry out a research programme with a duration of 10 years.
Article here Thread here
Emerge Australia article "Research Interview: Professor Ken Walder" by Jason Murphy. Walder, Chair of Metabolic Diseases at Deakin University, is an experienced researcher new to ME/CFS. The title of his NHMRC grant is "Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS". He plans to create muscle and brain tissue from stem cells. "After Walder and his team learn how to stress and dysregulate ME/CFS cells, the grant will fund the use of 1300 well-known, off-patent drugs to see which is best at restoring the cells to looking like healthy control cells."
Article here Thread here
Germany An article on the website of the University of Würzburg mentions that ME/CFS researcher Bhupesh Prusty, has obtained funding from the Amar Foundation and ME Research UK, reaching $900,000 in total.
Article here Thread here
............
Research
MedRxiv preprint (not yet peer reviewed)
"Statistical challenges of investigating a disease with a complex diagnosis" by Malato et al.
Data from 275 patients diagnosed with ME/CFS referred to the UK ME/CFS biobank were analysed according to CDC (Fukuda), IOM, CCC, and ICC criteria. 62.9% had a positive diagnosis across all the four case definitions, with percentages ranging from 97.8% Fukuda to 77.5% ICC.
The authors also analysed symptom profiles, and modelled statistically and through simulation possible impact of misclassification on an association analysis. They recommend 'a strong collaboration between these researchers and biostatisticians who have in principle the technical skills needed'.
Article here Thread here
Health Expectations
“'Reluctant pioneer': A qualitative study of doctors' experiences as patients with long COVID” by Taylor et al.
The authors, which include Carolyn Chew-Graham, conducted interviews with 13 doctors experiencing persistent symptoms following COVID-19. One participated noted how “a number of us on the group have said how ashamed we are of some of the attitudes we’ve had towards people, and lack of empathy… This concept of being irritated by patients when they’re not really pleased when something comes back normal.”
Article here Thread here
BMJ Case Reports
“Recovery from refractory chronic fatigue syndrome with CBT and modafinil” by Garg et al.
In this case report, three patients with ‘treatment-resistant’ CFS that were subsequently treated with modafinil in combination with CBT, were retrospectively reviewed. The authors conclude modafinil, “to be a potentially useful potentiating agent when added to CBT.”
Article here Thread here
MedRxiv preprint (not yet peer reviewed)
"Functional and microstructural brain abnormalities, fatigue, and cognitive dysfunction after mild COVID-19" Silva et al.
fMRI scans of the brains of 87 non-hospitalized recovered individuals 54 days after the laboratory confirmation of COVID-19 showed some 'cerebral white matter alterations' that correlated with cognitive symptoms, and 'severely disrupted brain hyperconnectivity and loss of resting-state networks specificity.'
Paper here Thread here
Preprints
"Listening to Long COVID: Epistemic Injustice and COVID-19 morbidity" by de Jesus et al.
'Despite certain differences from established chronic conditions, Long COVID can assist in understanding the struggles and mitigating the injustices faced by similar populations.' ME/CFS is included in conditions discussed.
Article here Thread here
.............
Coming events
Long COVID Alliance Webinar: "POTS and Dysautonomia in Longhaul COVID: Diagnosis, Treatment and Current Research" 7th April.
Details here Thread here
UK DecodeME webinar 6:00–6:45pm Thursday 15 April.
'Management Group Q&A webinar, which focuses specifically on our recruitment process, so that people wanting to take part in DecodeME know what to expect.'
Details here Thread here
...............
Job opportunities
UK Action for ME has 3 posts with application deadlines this week: Research Officer, Children and Young People's Advocacy Officer, and Advocacy Officer.
Details here Thread here
...............
Fundraising
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS, including on the PACE trial and on the negative impact of the psychological model of ME/CFS. So far about £9,500 has been raised of the target £25,000 to enable him to continue this work.
Details and donation here Thread here
....................
Covid-19 and ME
Medscape COVID-19 'Long-Haul' Symptoms Overlap With ME/CFS
Article is based on a recent press briefing by MEAction on an increasing number of Long Covid patients meeting diagnostic criteria for ME/CFS. Includes quotes from Anthony Komaroff, Lucinda Bateman and Avindra Nath.
Article here Thread here
Byline Times ME & LONG COVID When Will Our Exhausted Cries Be Heard?
"Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power"
Article here Thread here
Trial by Error by David Tuller "Clueless Wall Street Journal Op-Ed Endorses PACE as the "Prevailing View" Among Docs"
A critical view on an opinion piece from a resident psychiatrist suggesting a psychogenic explanation for both Long Covid and ME/CFS. Tuller describes the piece as "breathtakingly ill-informed".
Article here Thread here
USA - NPR WHYY The Aftermath of Viruses
This 49 minutes programme on post viral illness has a segment titled "How COVID long-haulers might renew the focus on chronic fatigue syndrome" that interviews Leonard Jason about ME.
Whole programme here Segment with Jason here (8 minutes) Thread here
Other items of interest
COVID-19 working group New York "Chronic injustice: Centering equitable health care and policies for Covid-19 and other chronic conditions"
Report here Thread here
The BMJ Opinion "Marija Pantelic and Nisreen Alwan: The stigma is real for people living with long Covid"
Opinion piece here Thread here
The Guardian "Women are more susceptible to long Covid, but will we listen to them?
Article here Thread here
Los Angeles Times "Cases of 'Long COVID' frustrate patients, puzzle scientists"
Article here Thread here
CNN "Doctor: My long-Covid patient's stories of recovery sound familiar to me"
Opinion piece here Thread here
................
S4ME social media: Facebook, Twitter and You Tube