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News in Brief - October 2022
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Week beginning 3rd October 2022
News, articles, advocacy
Sweden Forum member @MittEremitage has written a thorough series about brain training after a doctor claimed in a podcast that this is a documented treatment for ME, and refers to an ongoing trial on brain training and Long Covid. The blog posts are titled: "Is ME your own fault?", "Can brain training cure ME and Long Covid?", "Can you recover by persuasion?", "Are DNRS, Gupta program and ANS rewire the same?", "Are there differences between miracle workers and doctors?"
Blog series here Thread with links to google translations here
USA - NIH On October 4th the NIH Director's Blog posted "Understanding Long-Term COVID-19 Symptoms and Enhancing Recovery" that discussed the NIH RECOVER initiative. It also included the observation that "post-viral conditions are not a new concept. Many, but not all, of the symptoms reported in Long COVID, including fatigue, post-exertional malaise, chronic musculoskeletal pain, sleep disorders, postural orthostatic tachycardia (POTS), and cognitive issues, overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
Blog post here Thread here
On Point: "How Chronic Fatigue Syndrome is helping doctors understand long COVID"
The October 5th episode of On Point (podcast) talks about Long Covid with Dr. David Putrino, director of rehabilitation innovation for Mount Sinai Health System, and Dr. Lucinda Bateman, founder and medical director of the Bateman Horne Resource Center. Some interview highlights from the audio have been transcribed. About 47 minutes long.
Episode here Thread here
Trial by Error by David Tuller
"Mt Sinai's David Putrino on Long Covid, Post-Exertional Malaise, and Lazy Doctors - Text Version"
A transcribed and edited version from a video interview Tuller made with neuroscientist and physical therapist David Putrino in May 2022.
Article here Thread here
"What I've Read Recently-Yong, Jason, Prior & Lowenstein, & Eliot Smith"
Recent articles Tuller recommends, and comment on how ME is finally having its media moment.
Article here Thread here
Healthcare Hubris blog "Spotlight on ME/CFS: Who is lobbying whom?" Parts 1 and 2 by Jo Hunt. These two articles review some of the interactions between Wessely, Aylward and White and the UK government benefits department (DWP, formerly DSS) in the early 1990's based on archive material obtained using FOI by Valerie Eliot Smith.
Artlcles here Thread here
Sweden In an article on the private clinic Bragée kliniker's website, physiotherapist and researcher on burnout syndrome Britt Bragée argues that diseases as fibromyalgia and ME/CFS are connected to difficult childhoods.
Article here Thread here
Denmark Article in the newspaper B.T. about Bendt Nielsen, MD, who suffers from ME and says the health care service has been of more damage than help for him. He deteriorated after having followed advice to exercise and is now bed bound.
Article here Thread here
UK Office of National Statistics publishes monthly updates on the prevalence of Long Covid. Latest estimates are 2.3 million with symptoms at least 4 weeks after infection, including half a million with symptoms for over 2 years.
ONS data here Thread here
USA CEPR (Center for Economic and Policy Research) "Understanding and Addressing Long COVID"
A summary of a report on findings and recommendations concerning Long Covid published in conjunction with the Congressional Progressive Caucus Center. Says prevalence of ME/CFS may rise to over 5 million people due to Covid-19 and that USA could have been in a better position today had research into ME/CFS been better funded in the past.
Article here Thread here
............
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023. Tuller has written an article titled "Berkeley's October Crowdfunding Campaign" with a recap and background information about his work.
Crowdfunding here Article here Thread here
............
Coming Events
UK - OMEGA (Oxfordshire ME Group for Action) AGM & talk by Caroline Struthers "An activist waiting to happen: my journey from ignorance to critic of establishment-backed research."
Sat, 29 October 2022, 14:00 – 16:00 BST, online
Register here Thread here
Webinar The Norwegian ME Association is organizing a webinar by Prof. Luis Nacul who was on the UK NICE ME/CFS guideline committee titled: “Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?”
The webinar is free and takes place October 13th at 14.00.
Registration here Thread here
UK BACME (British Association of Clinicians in ME/CFS) have a new website. They are holding an online conference for clinicians on 9th November titled 'Post exertional malaise and beyond.'
Website here Conference details here Thread here
USA - The Massachusetts ME/CFS and FM Association presents, "ME/CFS and Long COVID: Emerging Similarities and Why it Matters" featuring Dr. Anthony L. Komaroff. The meeting is scheduled for Saturday, October 22, from 1:00 - 3:00 P.M. Eastern Time.
Register here Thread here
..............
Research news and commentary
Frontiers in Neurology
Study protocol: "Multimodal MRI of ME/CFS: A cross-sectional neuroimaging study toward its neuropathophysiology and diagnosis" by Shan et al.
288 participants (91 ME/CFS, 61 chronic fatigue, 91 healthy sedentary controls, 45 fibromyalgia). The aim is to use MRI imaging to test the 'hypothesis that abnormal neurovascular coupling (NVC) may be the neurobiological origin of ME/CFS.' Blood flow changes with a cognitive task and with breath holding will be tested. The data will be randomly divided into a training group and a validation group for the analysis.
Protocol here Thread here
COMET initiative "Core Outcome Set for CFS/ME"
The COMET initiative promotes the development of core outcomes for different diseases in order to standardise research outcomes. This one for ME/CFS is currently underway, carried out by Dena Zeraatkar and Jason Busse from McMaster University, Canada. Forum members are concerned that they are not known to have relevant expertise.
Protocol here Thread here
UK ME Genetics research symposium 3 videos now available on YouTube:
Steve Gardner from Precision Life on 'Genetic Risk Factors for M.E./CFS Identified using Combinatorial Analysis'; Marte Viken of Oslo University Hospital on 'An immunogenetic study of ME/CFS patients'; Plenary session with feedback from workshops.
Videos here (each about 30 minutes) Thread here
USA - NIH The ME/CFS Research Network has published a newsletter that provides "updates and information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research news, ME/CFS Collaborative Research Network (MECFSnet) news, and new and ongoing activities at the NIH related to ME/CFS."
PDF here Thread here
..............
Research
Preprint MedRxiv
"Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS" by Helliwell, Tate et al
The researchers mapped genomic changes in 2 patients during a relapse recovery cycle and compared with 1 control. From the abstract: 'Severe health relapses in ME/CFS patients result in functionally important changes in their DNA methylomes that, while differing among patients, lead to similar compromised physiology.' The genes involved 'indicating disturbed metabolic, immune and inflammatory functions occurring during the relapse.'
Preprint here Thread here
Annals of Clinical and Translational Neurology
"Genetics of COVID-19 and ME/CFS: a systematic review" by Tziastoudi et al
In this review of previous studies of genetic components common to both diseases, and computer analysis of the results, the authors found some common pathways and conclude: 'Our results suggest that the pathogenesis of both syndromes could involve some immune dysfunction.'
Article here Thread here
Neuroscience & Biobehavioral Reviews
“Post-Viral Fatigue in COVID-19: A Review of Symptom Assessment Methods, Mental, Cognitive, and Physical Impairment” by Campos et al.
This review presents an overview of the most used instruments in assessing fatigue in long COVID-19.
Article here Thread here
University of Wolverhampton
“Factors That Influence How Relationships Adjust to a Diagnosis of Chronic Fatigue Syndrome: A Grounded Theory Study” by Jennifer Swinton
This thesis sought to illuminate couples’ experiences of ME/CFS, in order to
gain a greater understanding of the factors that influence adaptation to the condition in their joint relationship.
Thesis here Thread here
ResearchSquare
“Circadian skin temperature rhythm and dysautonomia in ME/CFS: the role of endothelin-1 in the vascular dysregulation” by Cambras et al.
This paper reports that circulating levels of endothelin-1 (ET-1) and vascular cell adhesion molecule-1 (VCAM-1) were significantly higher in ME/CFS compared to healthy controls.
Article here Thread here
Deutsche Medizinische Wochenschrift
“When COVID does not heal: post-COVID courses with fatigue and exercise intolerance” by Renz-Polster and Scheibenbogen.
This German article co-authored by ME/CFS researcher Carmen Scheibenbogen gives a brief overview of post-COVID symptoms of fatigue and exercise intolerance.
Article here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
News, articles, advocacy
Sweden Forum member @MittEremitage has written a thorough series about brain training after a doctor claimed in a podcast that this is a documented treatment for ME, and refers to an ongoing trial on brain training and Long Covid. The blog posts are titled: "Is ME your own fault?", "Can brain training cure ME and Long Covid?", "Can you recover by persuasion?", "Are DNRS, Gupta program and ANS rewire the same?", "Are there differences between miracle workers and doctors?"
Blog series here Thread with links to google translations here
USA - NIH On October 4th the NIH Director's Blog posted "Understanding Long-Term COVID-19 Symptoms and Enhancing Recovery" that discussed the NIH RECOVER initiative. It also included the observation that "post-viral conditions are not a new concept. Many, but not all, of the symptoms reported in Long COVID, including fatigue, post-exertional malaise, chronic musculoskeletal pain, sleep disorders, postural orthostatic tachycardia (POTS), and cognitive issues, overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
Blog post here Thread here
On Point: "How Chronic Fatigue Syndrome is helping doctors understand long COVID"
The October 5th episode of On Point (podcast) talks about Long Covid with Dr. David Putrino, director of rehabilitation innovation for Mount Sinai Health System, and Dr. Lucinda Bateman, founder and medical director of the Bateman Horne Resource Center. Some interview highlights from the audio have been transcribed. About 47 minutes long.
Episode here Thread here
Trial by Error by David Tuller
"Mt Sinai's David Putrino on Long Covid, Post-Exertional Malaise, and Lazy Doctors - Text Version"
A transcribed and edited version from a video interview Tuller made with neuroscientist and physical therapist David Putrino in May 2022.
Article here Thread here
"What I've Read Recently-Yong, Jason, Prior & Lowenstein, & Eliot Smith"
Recent articles Tuller recommends, and comment on how ME is finally having its media moment.
Article here Thread here
Healthcare Hubris blog "Spotlight on ME/CFS: Who is lobbying whom?" Parts 1 and 2 by Jo Hunt. These two articles review some of the interactions between Wessely, Aylward and White and the UK government benefits department (DWP, formerly DSS) in the early 1990's based on archive material obtained using FOI by Valerie Eliot Smith.
Artlcles here Thread here
Sweden In an article on the private clinic Bragée kliniker's website, physiotherapist and researcher on burnout syndrome Britt Bragée argues that diseases as fibromyalgia and ME/CFS are connected to difficult childhoods.
Article here Thread here
Denmark Article in the newspaper B.T. about Bendt Nielsen, MD, who suffers from ME and says the health care service has been of more damage than help for him. He deteriorated after having followed advice to exercise and is now bed bound.
Article here Thread here
UK Office of National Statistics publishes monthly updates on the prevalence of Long Covid. Latest estimates are 2.3 million with symptoms at least 4 weeks after infection, including half a million with symptoms for over 2 years.
ONS data here Thread here
USA CEPR (Center for Economic and Policy Research) "Understanding and Addressing Long COVID"
A summary of a report on findings and recommendations concerning Long Covid published in conjunction with the Congressional Progressive Caucus Center. Says prevalence of ME/CFS may rise to over 5 million people due to Covid-19 and that USA could have been in a better position today had research into ME/CFS been better funded in the past.
Article here Thread here
............
Crowdfunding
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023. Tuller has written an article titled "Berkeley's October Crowdfunding Campaign" with a recap and background information about his work.
Crowdfunding here Article here Thread here
............
Coming Events
UK - OMEGA (Oxfordshire ME Group for Action) AGM & talk by Caroline Struthers "An activist waiting to happen: my journey from ignorance to critic of establishment-backed research."
Sat, 29 October 2022, 14:00 – 16:00 BST, online
Register here Thread here
Webinar The Norwegian ME Association is organizing a webinar by Prof. Luis Nacul who was on the UK NICE ME/CFS guideline committee titled: “Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?”
The webinar is free and takes place October 13th at 14.00.
Registration here Thread here
UK BACME (British Association of Clinicians in ME/CFS) have a new website. They are holding an online conference for clinicians on 9th November titled 'Post exertional malaise and beyond.'
Website here Conference details here Thread here
USA - The Massachusetts ME/CFS and FM Association presents, "ME/CFS and Long COVID: Emerging Similarities and Why it Matters" featuring Dr. Anthony L. Komaroff. The meeting is scheduled for Saturday, October 22, from 1:00 - 3:00 P.M. Eastern Time.
Register here Thread here
..............
Research news and commentary
Frontiers in Neurology
Study protocol: "Multimodal MRI of ME/CFS: A cross-sectional neuroimaging study toward its neuropathophysiology and diagnosis" by Shan et al.
288 participants (91 ME/CFS, 61 chronic fatigue, 91 healthy sedentary controls, 45 fibromyalgia). The aim is to use MRI imaging to test the 'hypothesis that abnormal neurovascular coupling (NVC) may be the neurobiological origin of ME/CFS.' Blood flow changes with a cognitive task and with breath holding will be tested. The data will be randomly divided into a training group and a validation group for the analysis.
Protocol here Thread here
COMET initiative "Core Outcome Set for CFS/ME"
The COMET initiative promotes the development of core outcomes for different diseases in order to standardise research outcomes. This one for ME/CFS is currently underway, carried out by Dena Zeraatkar and Jason Busse from McMaster University, Canada. Forum members are concerned that they are not known to have relevant expertise.
Protocol here Thread here
UK ME Genetics research symposium 3 videos now available on YouTube:
Steve Gardner from Precision Life on 'Genetic Risk Factors for M.E./CFS Identified using Combinatorial Analysis'; Marte Viken of Oslo University Hospital on 'An immunogenetic study of ME/CFS patients'; Plenary session with feedback from workshops.
Videos here (each about 30 minutes) Thread here
USA - NIH The ME/CFS Research Network has published a newsletter that provides "updates and information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research news, ME/CFS Collaborative Research Network (MECFSnet) news, and new and ongoing activities at the NIH related to ME/CFS."
PDF here Thread here
..............
Research
Preprint MedRxiv
"Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS" by Helliwell, Tate et al
The researchers mapped genomic changes in 2 patients during a relapse recovery cycle and compared with 1 control. From the abstract: 'Severe health relapses in ME/CFS patients result in functionally important changes in their DNA methylomes that, while differing among patients, lead to similar compromised physiology.' The genes involved 'indicating disturbed metabolic, immune and inflammatory functions occurring during the relapse.'
Preprint here Thread here
Annals of Clinical and Translational Neurology
"Genetics of COVID-19 and ME/CFS: a systematic review" by Tziastoudi et al
In this review of previous studies of genetic components common to both diseases, and computer analysis of the results, the authors found some common pathways and conclude: 'Our results suggest that the pathogenesis of both syndromes could involve some immune dysfunction.'
Article here Thread here
Neuroscience & Biobehavioral Reviews
“Post-Viral Fatigue in COVID-19: A Review of Symptom Assessment Methods, Mental, Cognitive, and Physical Impairment” by Campos et al.
This review presents an overview of the most used instruments in assessing fatigue in long COVID-19.
Article here Thread here
University of Wolverhampton
“Factors That Influence How Relationships Adjust to a Diagnosis of Chronic Fatigue Syndrome: A Grounded Theory Study” by Jennifer Swinton
This thesis sought to illuminate couples’ experiences of ME/CFS, in order to
gain a greater understanding of the factors that influence adaptation to the condition in their joint relationship.
Thesis here Thread here
ResearchSquare
“Circadian skin temperature rhythm and dysautonomia in ME/CFS: the role of endothelin-1 in the vascular dysregulation” by Cambras et al.
This paper reports that circulating levels of endothelin-1 (ET-1) and vascular cell adhesion molecule-1 (VCAM-1) were significantly higher in ME/CFS compared to healthy controls.
Article here Thread here
Deutsche Medizinische Wochenschrift
“When COVID does not heal: post-COVID courses with fatigue and exercise intolerance” by Renz-Polster and Scheibenbogen.
This German article co-authored by ME/CFS researcher Carmen Scheibenbogen gives a brief overview of post-COVID symptoms of fatigue and exercise intolerance.
Article here Thread here
..............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 10th October 2022 - Part 1 of 2
News, articles, advocacy
Germany
The draft report on ME/CFS by IQWIG, The German Institute for Quality and Efficiency in Health Care, has been released. It controversially recommends graded exercise and cognitive behavior therapy. Stakeholders are invited to provide comments on the draft report.
Report here Thread here
The Irish Times ME: 'I spend 20 hours a day lying down. I have four upright hours in the day'
Excellent and well researched article about the history of ME, research, and living with the disease. It features ME patients, carers and advocates including Moira Dillion from the ME Advocates Ireland and Tom Kindlon from the Irish ME CFS Association as well as experts including Professor Brian Hughes and Dr. William Weir. "Sufferers of myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease."
Article here Thread here
UK Doctors with ME "Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards" In an article addressing the current delivery plan discussions set up by former Health secretary Sajid Javid, DwME give examples of failure of care, and say: 'We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/CFS patients. It takes the form of official guidance called “Rights and Obligations in ME/CFS”'
Article here Thread here
Norway In a recent entertainment podcast two comedians claimed many doctors are afraid to say what they really think about ME and that the patients don't understand that body and mind are intertwined. The comedians then called patient advocate Frøydis Lilledalen and compared it to calling ISIS. The podcast episode was discussed on a debate programme on TV with one of the comedians and patient advocate Nina E. Steinkopf who said the podcast contributes to misinformation and stigmatisation of ME patients. The newspaper Dagsavisen followed up with an article where Lilledalen says she had participated in the podcast in the hope of decreasing prejudice and encourages the comedians to do more research. ME sufferer Laura Maria Neal wrote an opinion piece in Aftenposten saying yes, it's scary to talk about ME, but most scary for the patients themselves due to all the stigma.
TV debate here Dagsavisen article here Opinion piece here Thread here
Journal of The Royal New Zealand College of General Practitioners
Following Dr Vallings article warning against the Lightning Process for ME/CFS, the journal has now published a reply from an academic and an LP trainer defending LP with inaccurate arguments.
Letter here Thread here
The Guardian WHO chief urges immediate action to tackle 'devastating' long Covid
"Long Covid is “devastating” the lives and livelihoods of tens of millions of people, and wreaking havoc on health systems and economies, the head of the World Health Organization (WHO) has warned as he urged countries to launch “immediate” and “sustained” efforts to tackle the “very serious” crisis."
Article here Thread here
The Guardian series "Living with on Long Covid".
The Guardian invited readers to submit their stories of their Long Covid experiences as well as comments from clinicians. These have been published in a series of articles over several days.
Guardian's series list with links here Thread here
STAT A doctor's humbling journey treating long Covid: 'The second we think we know what we are doing, we fall flat on our face'
Conversation with Wes Ely, MD on how long Covid is pushing doctors outside their comfort zone with illnesses they can't define.
Article here Thread here
WPR Medically maligned Chronic Fatigue Syndrome holds clues to long Covid
Excellent radio interview with Jamie Seltzer, researcher and ME sufferer, and with David Kaufman, MD on ME, Long Covid and their overlap.
Programme here Thread here
Medscape Will Fatalism Kill the Needed Response to Long COVID?
Commentary by David Putrino, PhD. "Given the enormous numbers of people who develop long COVID symptoms following acute infection, and the general air of fatalism that we are observing toward long-term public health policy to prevent SARS-CoV-2 infection, it's clear that we have failed to adequately sound the alarm about long COVID. As a result, the long-term health of millions of Americans could be forever changed."
Article here Thread here
USA - The CDC has included a story about ME/CFS as a post-COVID condition to their "Voice of the Patient" series. The story summary is "Eleanor received a diagnosis of ME/CFS following COVID illness."
Story here Thread here
USA - NewsNation "Long COVID believed to be impacting 20 million Americans"
A 5 minute video interview with Dr. William Li about Long Covid. Long Covid is described as a serious chronic illness that can cause disability but it is framed as brand new "mystery" illness without mentioning any other post-viral conditions such as ME.
Story here Thread here
................
Fundraising
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023.
Nearly $25,000 donated so far. Closes 31st October.
Crowdfunding here Thread here
................
Coming events
Webinar - Dr David Tuller on "Epidemiological sleight of hand and Medically Unexplained Symptoms", Tues 18th Oct, 2-4pm BST
'... about the trope of ‘medically unexplained symptoms’ (MUS) and the bolstering of research findings to support the tenuous inferences that surround them. The talk will touch on a range of case studies, including ME/CFS, Long COVID, and POTS.'
Register here Thread here
UK #MillionsMissing London Parliament Square, Tuesday 18th October 1-3pm, organised by #MEAction UK. Several MP's have agreed to attend. Speakers include Prof. Kell on his research, Claire Tripp on DecodeME and Sarah Boothby, Maeve Boothby O’Neill’s mother, a registered social worker advocating (pro bono) for families where death from ME is a possibility will be talking about her experiences. There are also virtual actions planned.
Details here Details of virtual actions here Thread here
USA - CDC The next CDC ME/CFS Webinar will be held via Zoom on December 6 at 3 PM Eastern Time. After CDC updates guest speaker David Systrom will give a presentation, "Neurovascular Dysregulation Underlies Exercise Intolerance in ME/CFS."
Announcement here Thread here
...............
Research news and commentary
USA - Solve ME has announced the latest group of Ramsay researchers who will be doing ME/CFS and Long Covid studies.
Article here Thread here
UK DecodeME The researchers report that so far there are 18,000 registered participants. 13,500 have completed the questionnaire part of the study and some of these have been sent spit kits for the genetic part of the study. An excellent start, but many more UK based participants are needed.
Thread here
UK DecodeME The video of Prof. Chris Ponting's presentation and Q&A to the Sheffield ME and Fibro group is now available. A fascinating session including a glimpse into Chris Ponting's scientific journey, news on how the study is going, and what happens next.
Duration 1 hour.
Video here Thread here
Video - Prof Douglas Kell, Research Chair in Systems Biology, University of Liverpool. "Post-exertional malaise as a Chronic Ischaemia-Reperfusion injury in Long COVID and M.E./CFS resulting from fibrin amyloid micro clots." Duration 42 minutes.
Video here Thread here
Video - "What To Do When Working Out Isn't Working Out"
A recording of a presentation by Dr. Todd Davenport, given at the San Diego Pain Summit on February 26, 2021, is now available. Subtitled "Insights from the Physiology of Post-Exertional Symptom Exacerbation (PESE)" this talk discusses the differences between deconditioning and PESE and why graded exercise therapy is harmful for patients with PESE. Duration about 55 minutes.
Video here Thread here
Video: Prof Karl Morten "Mitochondrial dysfunction: Chronic Fatigue Syndrome and long COVID" Duration 1hour 17 min.
Video here Thread here
Trial by Error by David Tuller Update on Professor Crawley's Uncorrected Ethics Statements
Back in 2019, Bristol and the UK's Health Research Authority (HRA) requested that Professor Crawley corrected 11 papers on ME. When Tuller recently alerted the HRA that only four of the papers have been corrected, they said they would look into it and get back by October 4th. This has now been delayed due to a request from the university of an extension.
Article here Thread here
USA - AIM ImmunoTech has announced a Phase 2 trial of Ampligen (rintatolimod) for the treatment of Post-Covid conditions (Long Covid).
Press release here Article here Thread here
PLOS ONE
"Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol" by Heaton-Shrestha et al
The protocol for a UK NIHR funded project where people with Long Covid and rehabilitation specialists will work together to design resources and programs for individualised rehabilitation.
Protocol here Thread here
................
see next post for part 2 - Research
News, articles, advocacy
Germany
The draft report on ME/CFS by IQWIG, The German Institute for Quality and Efficiency in Health Care, has been released. It controversially recommends graded exercise and cognitive behavior therapy. Stakeholders are invited to provide comments on the draft report.
Report here Thread here
The Irish Times ME: 'I spend 20 hours a day lying down. I have four upright hours in the day'
Excellent and well researched article about the history of ME, research, and living with the disease. It features ME patients, carers and advocates including Moira Dillion from the ME Advocates Ireland and Tom Kindlon from the Irish ME CFS Association as well as experts including Professor Brian Hughes and Dr. William Weir. "Sufferers of myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease."
Article here Thread here
UK Doctors with ME "Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards" In an article addressing the current delivery plan discussions set up by former Health secretary Sajid Javid, DwME give examples of failure of care, and say: 'We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/CFS patients. It takes the form of official guidance called “Rights and Obligations in ME/CFS”'
Article here Thread here
Norway In a recent entertainment podcast two comedians claimed many doctors are afraid to say what they really think about ME and that the patients don't understand that body and mind are intertwined. The comedians then called patient advocate Frøydis Lilledalen and compared it to calling ISIS. The podcast episode was discussed on a debate programme on TV with one of the comedians and patient advocate Nina E. Steinkopf who said the podcast contributes to misinformation and stigmatisation of ME patients. The newspaper Dagsavisen followed up with an article where Lilledalen says she had participated in the podcast in the hope of decreasing prejudice and encourages the comedians to do more research. ME sufferer Laura Maria Neal wrote an opinion piece in Aftenposten saying yes, it's scary to talk about ME, but most scary for the patients themselves due to all the stigma.
TV debate here Dagsavisen article here Opinion piece here Thread here
Journal of The Royal New Zealand College of General Practitioners
Following Dr Vallings article warning against the Lightning Process for ME/CFS, the journal has now published a reply from an academic and an LP trainer defending LP with inaccurate arguments.
Letter here Thread here
The Guardian WHO chief urges immediate action to tackle 'devastating' long Covid
"Long Covid is “devastating” the lives and livelihoods of tens of millions of people, and wreaking havoc on health systems and economies, the head of the World Health Organization (WHO) has warned as he urged countries to launch “immediate” and “sustained” efforts to tackle the “very serious” crisis."
Article here Thread here
The Guardian series "Living with on Long Covid".
The Guardian invited readers to submit their stories of their Long Covid experiences as well as comments from clinicians. These have been published in a series of articles over several days.
Guardian's series list with links here Thread here
STAT A doctor's humbling journey treating long Covid: 'The second we think we know what we are doing, we fall flat on our face'
Conversation with Wes Ely, MD on how long Covid is pushing doctors outside their comfort zone with illnesses they can't define.
Article here Thread here
WPR Medically maligned Chronic Fatigue Syndrome holds clues to long Covid
Excellent radio interview with Jamie Seltzer, researcher and ME sufferer, and with David Kaufman, MD on ME, Long Covid and their overlap.
Programme here Thread here
Medscape Will Fatalism Kill the Needed Response to Long COVID?
Commentary by David Putrino, PhD. "Given the enormous numbers of people who develop long COVID symptoms following acute infection, and the general air of fatalism that we are observing toward long-term public health policy to prevent SARS-CoV-2 infection, it's clear that we have failed to adequately sound the alarm about long COVID. As a result, the long-term health of millions of Americans could be forever changed."
Article here Thread here
USA - The CDC has included a story about ME/CFS as a post-COVID condition to their "Voice of the Patient" series. The story summary is "Eleanor received a diagnosis of ME/CFS following COVID illness."
Story here Thread here
USA - NewsNation "Long COVID believed to be impacting 20 million Americans"
A 5 minute video interview with Dr. William Li about Long Covid. Long Covid is described as a serious chronic illness that can cause disability but it is framed as brand new "mystery" illness without mentioning any other post-viral conditions such as ME.
Story here Thread here
................
Fundraising
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023.
Nearly $25,000 donated so far. Closes 31st October.
Crowdfunding here Thread here
................
Coming events
Webinar - Dr David Tuller on "Epidemiological sleight of hand and Medically Unexplained Symptoms", Tues 18th Oct, 2-4pm BST
'... about the trope of ‘medically unexplained symptoms’ (MUS) and the bolstering of research findings to support the tenuous inferences that surround them. The talk will touch on a range of case studies, including ME/CFS, Long COVID, and POTS.'
Register here Thread here
UK #MillionsMissing London Parliament Square, Tuesday 18th October 1-3pm, organised by #MEAction UK. Several MP's have agreed to attend. Speakers include Prof. Kell on his research, Claire Tripp on DecodeME and Sarah Boothby, Maeve Boothby O’Neill’s mother, a registered social worker advocating (pro bono) for families where death from ME is a possibility will be talking about her experiences. There are also virtual actions planned.
Details here Details of virtual actions here Thread here
USA - CDC The next CDC ME/CFS Webinar will be held via Zoom on December 6 at 3 PM Eastern Time. After CDC updates guest speaker David Systrom will give a presentation, "Neurovascular Dysregulation Underlies Exercise Intolerance in ME/CFS."
Announcement here Thread here
...............
Research news and commentary
USA - Solve ME has announced the latest group of Ramsay researchers who will be doing ME/CFS and Long Covid studies.
Article here Thread here
UK DecodeME The researchers report that so far there are 18,000 registered participants. 13,500 have completed the questionnaire part of the study and some of these have been sent spit kits for the genetic part of the study. An excellent start, but many more UK based participants are needed.
Thread here
UK DecodeME The video of Prof. Chris Ponting's presentation and Q&A to the Sheffield ME and Fibro group is now available. A fascinating session including a glimpse into Chris Ponting's scientific journey, news on how the study is going, and what happens next.
Duration 1 hour.
Video here Thread here
Video - Prof Douglas Kell, Research Chair in Systems Biology, University of Liverpool. "Post-exertional malaise as a Chronic Ischaemia-Reperfusion injury in Long COVID and M.E./CFS resulting from fibrin amyloid micro clots." Duration 42 minutes.
Video here Thread here
Video - "What To Do When Working Out Isn't Working Out"
A recording of a presentation by Dr. Todd Davenport, given at the San Diego Pain Summit on February 26, 2021, is now available. Subtitled "Insights from the Physiology of Post-Exertional Symptom Exacerbation (PESE)" this talk discusses the differences between deconditioning and PESE and why graded exercise therapy is harmful for patients with PESE. Duration about 55 minutes.
Video here Thread here
Video: Prof Karl Morten "Mitochondrial dysfunction: Chronic Fatigue Syndrome and long COVID" Duration 1hour 17 min.
Video here Thread here
Trial by Error by David Tuller Update on Professor Crawley's Uncorrected Ethics Statements
Back in 2019, Bristol and the UK's Health Research Authority (HRA) requested that Professor Crawley corrected 11 papers on ME. When Tuller recently alerted the HRA that only four of the papers have been corrected, they said they would look into it and get back by October 4th. This has now been delayed due to a request from the university of an extension.
Article here Thread here
USA - AIM ImmunoTech has announced a Phase 2 trial of Ampligen (rintatolimod) for the treatment of Post-Covid conditions (Long Covid).
Press release here Article here Thread here
PLOS ONE
"Co-designing personalised self-management support for people living with long Covid: The LISTEN protocol" by Heaton-Shrestha et al
The protocol for a UK NIHR funded project where people with Long Covid and rehabilitation specialists will work together to design resources and programs for individualised rehabilitation.
Protocol here Thread here
................
see next post for part 2 - Research
continued from previous post
Week beginning 10th October 2022 - Part 2
Research
Neuron
"The neurobiology of Long Covid" by Monje and Iwasaki
In this perspective article the authors 'review what is understood about the pathobiology of post-acute COVID-19 impacts on the CNS and discuss possible neurobiological underpinnings of the cognitive symptoms affecting COVID-19 survivors. We propose the chief mechanisms that may contribute to this emerging neurological health crisis.'
Article here Explanation on twitter by Monje here Thread here
Cardiology
"Use of Cardiopulmonary Exercise Testing to Evaluate Long COVID-19 Symptoms in Adults A Systematic Review and Meta-analysis" by Durstenfeld et al
38 studies were included. With low confinence because of heterogeneity of studies, the authors identified reduced exercise capacity and conclude: 'Potential mechanisms for exertional intolerance other than deconditioning include altered autonomic function (eg, chronotropic incompetence, dysfunctional breathing), endothelial dysfunction, and muscular or mitochondrial pathology.'
Article here Thread here
Frontiers in Immunology
“Biomarkers in the diagnostic algorithm of myalgic encephalomyelitis/chronic fatigue syndrome” by Gravelsina et al.
This Latvian study found increased levels of autoantibodies against beta2-adrenergic receptors (b2AdR) and muscarinic acetylcholine receptors (M4 AChR) in 133 ME/CFS patients compared to controls. In addition, ME/CFS patients with a high load of Human herpesvirus 6 a had a more severe course of the disease.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“A new clinical challenge: supporting patients coping with the long-term effects of COVID-19” by Goldberg et al.
In this paper, a collaborative of researchers and patients with ME/CFS and/or Long Covid gives recommendations on how Mental Health Practitioners can support patients coping with the long-term effects of COVID-19.
Article here Thread here
BioRxiv preprint (not yet peer reviewed)
"ME/CFS and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes" bt Schutzer et al
30 ME/CFS patients, half of whom also had a diagnosis of fibromyalgia. No significant between group differences were found between the proteomes in the cerebrospinal fluid. There was no control group or fibromyalgia only group.
Preprint here Thread here
Psychoanalysis, Culture & Society
“Fatigue as an unconscious refusal of the demands of late capitalism” by Amanda Diserholt.
In this doctoral research, the author interviewed 9 ME/CFS patients to examine how the emergence of fatigue might be one way of unconsciously refusing the demand for constant activity. The paper relies on Lacanian psychoanalytic theory. Concerns have been raised in forum discussion about unfounded assumptions and conclusions.
Article here Thread here
Epidemiological Methods
“Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by Gaglio et al.
The authors studied 242 ME/CFS patients using the DePaul Symptom Questionnaire. They found that neurocognitive symptoms and orthostatic intolerance (OI) greatly overlap in ME/CFS.
Article here Thread here
Journal of Consciousness Studies
“Grief in Chronic Illness: A Case Study of CFS/ME” by Alexandra Byrne
Using a case study of ME/CFS, the author argues that the losses of illness can be genuine objects of grief and that this grief can be easily mistaken for depression.
Article here Thread here
................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 10th October 2022 - Part 2
Research
Neuron
"The neurobiology of Long Covid" by Monje and Iwasaki
In this perspective article the authors 'review what is understood about the pathobiology of post-acute COVID-19 impacts on the CNS and discuss possible neurobiological underpinnings of the cognitive symptoms affecting COVID-19 survivors. We propose the chief mechanisms that may contribute to this emerging neurological health crisis.'
Article here Explanation on twitter by Monje here Thread here
Cardiology
"Use of Cardiopulmonary Exercise Testing to Evaluate Long COVID-19 Symptoms in Adults A Systematic Review and Meta-analysis" by Durstenfeld et al
38 studies were included. With low confinence because of heterogeneity of studies, the authors identified reduced exercise capacity and conclude: 'Potential mechanisms for exertional intolerance other than deconditioning include altered autonomic function (eg, chronotropic incompetence, dysfunctional breathing), endothelial dysfunction, and muscular or mitochondrial pathology.'
Article here Thread here
Frontiers in Immunology
“Biomarkers in the diagnostic algorithm of myalgic encephalomyelitis/chronic fatigue syndrome” by Gravelsina et al.
This Latvian study found increased levels of autoantibodies against beta2-adrenergic receptors (b2AdR) and muscarinic acetylcholine receptors (M4 AChR) in 133 ME/CFS patients compared to controls. In addition, ME/CFS patients with a high load of Human herpesvirus 6 a had a more severe course of the disease.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“A new clinical challenge: supporting patients coping with the long-term effects of COVID-19” by Goldberg et al.
In this paper, a collaborative of researchers and patients with ME/CFS and/or Long Covid gives recommendations on how Mental Health Practitioners can support patients coping with the long-term effects of COVID-19.
Article here Thread here
BioRxiv preprint (not yet peer reviewed)
"ME/CFS and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes" bt Schutzer et al
30 ME/CFS patients, half of whom also had a diagnosis of fibromyalgia. No significant between group differences were found between the proteomes in the cerebrospinal fluid. There was no control group or fibromyalgia only group.
Preprint here Thread here
Psychoanalysis, Culture & Society
“Fatigue as an unconscious refusal of the demands of late capitalism” by Amanda Diserholt.
In this doctoral research, the author interviewed 9 ME/CFS patients to examine how the emergence of fatigue might be one way of unconsciously refusing the demand for constant activity. The paper relies on Lacanian psychoanalytic theory. Concerns have been raised in forum discussion about unfounded assumptions and conclusions.
Article here Thread here
Epidemiological Methods
“Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by Gaglio et al.
The authors studied 242 ME/CFS patients using the DePaul Symptom Questionnaire. They found that neurocognitive symptoms and orthostatic intolerance (OI) greatly overlap in ME/CFS.
Article here Thread here
Journal of Consciousness Studies
“Grief in Chronic Illness: A Case Study of CFS/ME” by Alexandra Byrne
Using a case study of ME/CFS, the author argues that the losses of illness can be genuine objects of grief and that this grief can be easily mistaken for depression.
Article here Thread here
................
S4ME social media: Facebook, Twitter and YouTube
Week beginning 17th October 2022
In the media
San Fransisco Chronicle A long-hidden disease is pulled from the shadows by its cousin, long COVID
Article about severe ME sufferer Whitney Dafoe, cared for by his parents Ron Davis and Janet Dafoe. Davis talks about the frustration over lack of research funds into ME and says there's no time to lose. Vicky Whittemore from the NIH says they're focusing now on long COVID because its trigger is known, but patient advocates Jaime Seltzer, Adriane Tillman and Terri Wilder argue a collaboration would be beneficial for both diseases.
Article here Thread here
The Guardian
Can long Covid research unlock other great medical mysteries of our time?
ME sufferer and advocate Lili Lim says the stories from long Covid patients were recognisable for her from early on. Researcher Ziyad Al-Aly says post-viral illness has been ignored for the last 100 years. Professor Leonard Jason sees some social progress for post-viral patients as the push for Long Covid answers continues.
Article here Thread here
'They can't ignore us any more': five women on long Covid and medical misogyny
On the history of the dismissal of diseases afflicting mostly females and its impact on Long Covid. Researcher Al-Aly says "Instead of acknowledging the limitations of our knowledge, we default to explanations that put the burden or the blame on the patient". We learn the stories of five Long Covid and ME sufferers.
Article here Thread here
Norway TV news segments and articles from TV2 about a severe ME patient who improved after receiving treatment for breast cancer. Researchers and MDs Fluge and Rekeland say they've had several patients with similar stories at their hospital. In the second article researcher Anne Kielland is investigating how ME patients are met in the health care system and is horrified by the results. Professor Emeritus Kristian Sommerfelt is not surprised by the results and says ME patients are a cowed patient group. Trude Schei from the Norwegian ME Association says the research confirms what the association has been saying for many years.
Articles here and here Thread here
Sweden - Professor Jonas Bergquis
TV4 Play had a segment about ME where Smilla talks about having suffered from ME since she was 13 years old. Professor Bergquist was also in studio and talked about research into ME and that he wants new technology from USA on brain imaging to come to Sweden and Europe.
TV segments here and here
Last month four MDs including Professor Bergquist wrote an opinion piece in the Journal of the Swedish Medical Association where they ask for the approach to post infectious diseases as Long Covid and ME/CFS to be based on knowledge and curiosity. They received a critical reply from the three MDs Gyll, Sjöstrom and Vogt who argue for broader perspective and a biopsychosocial approach. This led to an answer from Bergquist et al expressing worry over a stagnation of the Long Covid field due to a debate questioning its origin, existence and nature.
Opinion pieces here, here and here Thread here
Sweden 22 year old athlete Anna Amholt is forced to quit her ice hockey carrier due to Long Covid. She's now being assessed for ME, according to the newspaper Aftonbladet.
Article here Thread here
Denmark Patient advocate Madelleine Müller with excellent opinion piece in the newspaper Information about the horrible situation for ME patients in Denmark. She criticises the Danish Health Authority for not involving ME patients or biomedical ME experts when developing care for this patient group, which means they are left with outdated and harmful approaches such as graded exercise therapy. She points to Norway's clinic for severe ME sufferers (Røysumtunet) and the NICE guidelines for ME from UK as positive examples of progress.
Opinion piece here Thread here
...................
Fundraising
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023. 51% donated so far. Closes 31st October.
Crowdfunding here Thread here
..................
Research news and commentary
Videos from the recent ME conference in Sweden organised by RME are now available with talks from Øystein Fluge, Karl Johan Tronstad, Peter Rowe, Trude Schei and Brian Hughes.
Videos here Thread here
Trial by Error by David Tuller Did the Dog Eat Professor Crawley's Seven Missing Corrections?
Correspondence between Tuller and the UK's Health Research Authority (HRA) shows there's been a further delay from Bristol University concerning the correction from Professor Crawley of 11 papers on ME, as requested by HRA.
Article here Thread here
TCTMD Cardiopulmonary Tests in Long COVID Offer Some Clues, Pose More Questions
About a recent Jama paper that showed reduced exercise capacity in Long Covid patients. Donna Mancini from Icahn School of Medicine at Mount Sinai comments and says ME/CFS and Long Covid overlap "with shared symptoms like reduced peak VO2 and chronotropic incompetence" but that one can't look at CFS for treatments to apply to Long Covid, because there aren't any.
Article here Thread here
...............
Research
PLOS ONE
"Fibromyalgia and Chronic Fatigue Syndromes: A systematic review and meta-analysis of cardiorespiratory fitness and neuromuscular function compared with healthy individuals" by Zambolin et al.
'Our results demonstrate lower cardiorespiratory fitness and muscle function in those living with FMS or CFS when compared to controls.'
Review here Thread here
Healthcare
Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset ME/CFS Patients" by Van Campen and Visser
14 patients from each group had a tilt table test with cerebral blood flow test. 'No differences between the three groups were present in the prevalence of OI, heart rate and blood pressure changes, changes in cerebral blood flow or in cardiac index during the tilt test.' The authors suggest this means Long Covid is the essentially the same disease as ME/CFS.
Paper here Thread here
Healthcare
"Long-Haul COVID Patients Prevalence of POTS Are Reduced but Cerebral Blood Flow Abnormalities Remain Abnormal with Longer Disease Duration" by Visser and van Campen
29 long Covid patients, tilt table and cerebral blood flow tests. Times since infection varied from 3 to 28 months. Conclusion: 'In LHC patients, hemodynamic abnormalities of a tilt test change over time. Patients studied early after the onset of the disease mainly exhibit POTS, but patients studied later in the time course mainly show a normHRBP or OH. In addition, the abnormal CBF reduction improves over time, but CBF remains abnormal.'
Paper here Thread here
Frontiers in Immunology
"Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with ME/CFS"
by Eirini Apostolou et al
Paper here Thread here
MedRxiv Preprint
"Long COVID Risk and Pre-COVID Vaccination: An EHR-Based Cohort Study from the RECOVER Program" Brannock et al
This study found vaccination reduced the risk of developing Long COVID.
Preprint here Thread here
Death Studies
Risk factors for suicidal ideation in a chronic illness by Elliot & Jason
This study identified sleep-related symptoms, stigma, disability status, physical functioning, and marital status as risk factors for suicidal ideation in a sample of 559 ME/CFS patients.
Article here Thread here
Scandinavian Journal of Public Health
Examine the public health impacts of functional somatic disorders using the DanFunD study by Jørgensen et al.
The authors report that the prevalence of functional somatic disorders is approximately 10-15% in the Danish population and that it is twice as common in women as in men.
Article here Thread here
Diagnostics
“Factors Influencing the Prognosis of Patients with ME/CFS” by Ghali et al.
The authors looked at the data of 168 ME/CFS patients retrospectively and found that recovery and improvement rates were only 8.3% and 4.8%, respectively. Patients who recovered or improved were older when they got ill and had less diagnostic delay than the rest of the patient cohort.
Article here Thread here
International Journal of Environmental Research and Public Health
"Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe ME/CFS"
The authors report that their multidisciplinary hospital-based rehabilitation program for moderate and severe ME/CFS was associated with improvement in at least one area of well-being in 85% of patients they receive.
Article here Thread here
Chronic Illness
“Experiences of carers of youth, adult children and spouses with ME/CFS” by Bakken et al.
36 people completed an online survey on their experiences of caring for youth, young adults, and spouses with ME/CFS. Two super-ordinate themes were identified: “Lack of knowledge and understanding” and “Holistic Impact”.
Article here Thread here
...............
S4ME social media: Facebook, Twitter and YouTube
In the media
San Fransisco Chronicle A long-hidden disease is pulled from the shadows by its cousin, long COVID
Article about severe ME sufferer Whitney Dafoe, cared for by his parents Ron Davis and Janet Dafoe. Davis talks about the frustration over lack of research funds into ME and says there's no time to lose. Vicky Whittemore from the NIH says they're focusing now on long COVID because its trigger is known, but patient advocates Jaime Seltzer, Adriane Tillman and Terri Wilder argue a collaboration would be beneficial for both diseases.
Article here Thread here
The Guardian
Can long Covid research unlock other great medical mysteries of our time?
ME sufferer and advocate Lili Lim says the stories from long Covid patients were recognisable for her from early on. Researcher Ziyad Al-Aly says post-viral illness has been ignored for the last 100 years. Professor Leonard Jason sees some social progress for post-viral patients as the push for Long Covid answers continues.
Article here Thread here
'They can't ignore us any more': five women on long Covid and medical misogyny
On the history of the dismissal of diseases afflicting mostly females and its impact on Long Covid. Researcher Al-Aly says "Instead of acknowledging the limitations of our knowledge, we default to explanations that put the burden or the blame on the patient". We learn the stories of five Long Covid and ME sufferers.
Article here Thread here
Norway TV news segments and articles from TV2 about a severe ME patient who improved after receiving treatment for breast cancer. Researchers and MDs Fluge and Rekeland say they've had several patients with similar stories at their hospital. In the second article researcher Anne Kielland is investigating how ME patients are met in the health care system and is horrified by the results. Professor Emeritus Kristian Sommerfelt is not surprised by the results and says ME patients are a cowed patient group. Trude Schei from the Norwegian ME Association says the research confirms what the association has been saying for many years.
Articles here and here Thread here
Sweden - Professor Jonas Bergquis
TV4 Play had a segment about ME where Smilla talks about having suffered from ME since she was 13 years old. Professor Bergquist was also in studio and talked about research into ME and that he wants new technology from USA on brain imaging to come to Sweden and Europe.
TV segments here and here
Last month four MDs including Professor Bergquist wrote an opinion piece in the Journal of the Swedish Medical Association where they ask for the approach to post infectious diseases as Long Covid and ME/CFS to be based on knowledge and curiosity. They received a critical reply from the three MDs Gyll, Sjöstrom and Vogt who argue for broader perspective and a biopsychosocial approach. This led to an answer from Bergquist et al expressing worry over a stagnation of the Long Covid field due to a debate questioning its origin, existence and nature.
Opinion pieces here, here and here Thread here
Sweden 22 year old athlete Anna Amholt is forced to quit her ice hockey carrier due to Long Covid. She's now being assessed for ME, according to the newspaper Aftonbladet.
Article here Thread here
Denmark Patient advocate Madelleine Müller with excellent opinion piece in the newspaper Information about the horrible situation for ME patients in Denmark. She criticises the Danish Health Authority for not involving ME patients or biomedical ME experts when developing care for this patient group, which means they are left with outdated and harmful approaches such as graded exercise therapy. She points to Norway's clinic for severe ME sufferers (Røysumtunet) and the NICE guidelines for ME from UK as positive examples of progress.
Opinion piece here Thread here
...................
Fundraising
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023. 51% donated so far. Closes 31st October.
Crowdfunding here Thread here
..................
Research news and commentary
Videos from the recent ME conference in Sweden organised by RME are now available with talks from Øystein Fluge, Karl Johan Tronstad, Peter Rowe, Trude Schei and Brian Hughes.
Videos here Thread here
Trial by Error by David Tuller Did the Dog Eat Professor Crawley's Seven Missing Corrections?
Correspondence between Tuller and the UK's Health Research Authority (HRA) shows there's been a further delay from Bristol University concerning the correction from Professor Crawley of 11 papers on ME, as requested by HRA.
Article here Thread here
TCTMD Cardiopulmonary Tests in Long COVID Offer Some Clues, Pose More Questions
About a recent Jama paper that showed reduced exercise capacity in Long Covid patients. Donna Mancini from Icahn School of Medicine at Mount Sinai comments and says ME/CFS and Long Covid overlap "with shared symptoms like reduced peak VO2 and chronotropic incompetence" but that one can't look at CFS for treatments to apply to Long Covid, because there aren't any.
Article here Thread here
...............
Research
PLOS ONE
"Fibromyalgia and Chronic Fatigue Syndromes: A systematic review and meta-analysis of cardiorespiratory fitness and neuromuscular function compared with healthy individuals" by Zambolin et al.
'Our results demonstrate lower cardiorespiratory fitness and muscle function in those living with FMS or CFS when compared to controls.'
Review here Thread here
Healthcare
Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset ME/CFS Patients" by Van Campen and Visser
14 patients from each group had a tilt table test with cerebral blood flow test. 'No differences between the three groups were present in the prevalence of OI, heart rate and blood pressure changes, changes in cerebral blood flow or in cardiac index during the tilt test.' The authors suggest this means Long Covid is the essentially the same disease as ME/CFS.
Paper here Thread here
Healthcare
"Long-Haul COVID Patients Prevalence of POTS Are Reduced but Cerebral Blood Flow Abnormalities Remain Abnormal with Longer Disease Duration" by Visser and van Campen
29 long Covid patients, tilt table and cerebral blood flow tests. Times since infection varied from 3 to 28 months. Conclusion: 'In LHC patients, hemodynamic abnormalities of a tilt test change over time. Patients studied early after the onset of the disease mainly exhibit POTS, but patients studied later in the time course mainly show a normHRBP or OH. In addition, the abnormal CBF reduction improves over time, but CBF remains abnormal.'
Paper here Thread here
Frontiers in Immunology
"Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with ME/CFS"
by Eirini Apostolou et al
Paper here Thread here
MedRxiv Preprint
"Long COVID Risk and Pre-COVID Vaccination: An EHR-Based Cohort Study from the RECOVER Program" Brannock et al
This study found vaccination reduced the risk of developing Long COVID.
Preprint here Thread here
Death Studies
Risk factors for suicidal ideation in a chronic illness by Elliot & Jason
This study identified sleep-related symptoms, stigma, disability status, physical functioning, and marital status as risk factors for suicidal ideation in a sample of 559 ME/CFS patients.
Article here Thread here
Scandinavian Journal of Public Health
Examine the public health impacts of functional somatic disorders using the DanFunD study by Jørgensen et al.
The authors report that the prevalence of functional somatic disorders is approximately 10-15% in the Danish population and that it is twice as common in women as in men.
Article here Thread here
Diagnostics
“Factors Influencing the Prognosis of Patients with ME/CFS” by Ghali et al.
The authors looked at the data of 168 ME/CFS patients retrospectively and found that recovery and improvement rates were only 8.3% and 4.8%, respectively. Patients who recovered or improved were older when they got ill and had less diagnostic delay than the rest of the patient cohort.
Article here Thread here
International Journal of Environmental Research and Public Health
"Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe ME/CFS"
The authors report that their multidisciplinary hospital-based rehabilitation program for moderate and severe ME/CFS was associated with improvement in at least one area of well-being in 85% of patients they receive.
Article here Thread here
Chronic Illness
“Experiences of carers of youth, adult children and spouses with ME/CFS” by Bakken et al.
36 people completed an online survey on their experiences of caring for youth, young adults, and spouses with ME/CFS. Two super-ordinate themes were identified: “Lack of knowledge and understanding” and “Holistic Impact”.
Article here Thread here
...............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 24th October 2022
News, articles and advocacy
Australia "Inquiry into Long COVID and Repeated COVID Infections" Submissions to this inquiry are invited. The closing date is 18th November.
Information here Thread here
Centrelink have released a draft of 'Proposed changes to the Disability Support Pension (DSP) Impairment Tables' which specifically mention ME/CFS and PEM.
'The department has developed an Explanation of Proposed Changes paper which provides details about the changes and a questionnaire to help you have your say' by 11th November.
Draft here Thread here
The New York Times "Protesters So Ill, They Couldn’t Get Arrested"
Article that talks about post-exertional malaise and the symptom exacerbation that ME/CFS and Long Covid patients got after attending the recent 2022 Millions Missing protest.
Article here Thread here
UK - BMJ "Activists demand more funds for ME research" A brief report of the demonstration outside the UK parliament organised by #MEAction.
Article here Thread here
New Zealand The Spinoff "If you get Long Covid, who's going to help?"
'...But despite the size of the long Covid health crisis, not to mention an estimated 25,000 New Zealanders with ME/CFS, we receive nothing from the Ministry of Health. Something has to change.'
Article here Thread here
David Tuller
Epidemiological Sleight-of-Hand: The Troubling Case of "medically Unexplained Symptoms"
Great talk by Tuller, organised by Hidden Epidemics, University of Cambridge, on "the trope of 'medically unexplained symptoms' (MUS) and the bolstering of research findings to support the tenuous inferences that surround them. The talk touched on a range of case studies, including ME/CFS, Long COVID, and POTS". Duration: 1 h 22min
Talk here Thread here
Trial by Error: So the Dog Ate Professor Crawley's Corrections AND Her Correspondence As Well
Tuller has alerted the UK's Health Research Authority that their request for Professor Crawley to correct 11 papers on ME has not been fully followed through. Bristol University says the journals were contacted and asked to make the changes, but there's no record of the communication.
Article here Thread here
Trial by Error: German Draft Report on ME/CFS Raises Alarms for Promoting CBT and GET
A repost of The European ME Coalition's (EMEC) statement concerning an ME report from the Institute for Quality and Efficiency in Health Care (IQWiG) from Germany which among other things promotes CBT and GET as treatments.
Article here Thread here
Trial by Error: The Seventh Anniversary of My Initial Effort to Debunk the Fraudulent PACE Trial
This month it's seven years ago since Tuller published his 15.000-word investigation "of the egregiously flawed and fraudulent piece of crap known as the PACE trial".
Article here Thread here
UK - The Daily Telegraph Could long Covid hold the key to curing chronic fatigue?
Article about the newly published book "The Long Covid Handbook" by Gez Medinger and Dr. Danny Altmann. The article provides good background information about ME and how it's been neglected. Medinger says: "My great hope is that if there's one good thing that comes out of long Covid blighting our world is that in the process of trying to crack it, we will crack ME/CFS too. It's been a travesty - the gaslighting, dismissal and minimisation. But we have an opportunity to do something about it".
Tweet with article here Thread here
Norway The newspaper Morgenbladet had an article about a recent seminar in Oslo for researchers with a biopsychosocial approach to ME. The organisor Professor Reme felt they needed security guards and police on stand-by because she believes patients are out to get them. Professor Emeritus Rolf Rønning wrote an opinion piece for the same newspaper saying the only thing the biopsychosocial ME-movement has to fear is acceptance that their approach is outdated.
Article here Opinion piece here Thread here
TV2 has covered an ongoing research project about how ME patients are met in the health care system, and the results are shocking according to the researchers. The Prime Minister and the Minister of Health are not planning to do anything concrete to make matters better.
Article here Thread here
Professors Reme and Wyller and research director at the Norwegian Institute for public health, Flottorp, wrote an opinion piece in Aftenposten saying that ME often resolves by itself and that GET and CBT can make many ME patients recover. They also say it's dishonest to claim there's evidence for ME patients deteriorating from GET and CBT and further that there's no reason to avoid rehabilitation.
Patient advocates Nina E. Steinkopf and Jørn Tore Haugen responded in Aftenposten explaining the reason behind GET and CBT are being left as treatment approaches and saying it's harmful when professionals keep using outdated and refuted myths.
Reme et al's opinion piece here Steinkopf/Haugen's opinion piece here Thread here
Medscape I'm a Physician Battling Long COVID. I Can Assure You It's Real
Commentary by Monica Verduzzon Gutierrez, MD, where she tells of her experiences as Long Covid sufferer and urges more physicians should be trained in treating post infectious conditions.
Article here Thread here
The Long Covid Survival Guide
This book, subtitled "How to Take Care of Yourself and What Comes Next," is described as a "patient-to-patient guide for people living with Long COVID." The release date is November 8 but it's available for pre-order now.
Book Info here Thread here
...................
Fundraising
David Tuller Fundraising closes on Monday 31st October.
Crowdfunding here Thread here
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Useful resources
The ME Association Clinical & Research Guide 2022: Children & Adolescents
The MEA has made available as a download the 6 page chapter on children and adolescents from it's most recent Clinical and Research Guide. This includes sections on diagnosis, management, education and safeguarding.
Document here Thread here
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Research news and commentary
UK DecodeME Thousands more people in the UK diagnosed with ME/CFS and aged over 16 are needed to participate in this study. There are flyers you can print off on the website to hand out, and information on ways to share on social media to help spread the word.
Ways to share here Sign up here Thread here
Solve ME/CFS
On 24 October, ME/CFS researchers Carmen Scheibenbogen held a webinar titled “COVID-19 as a Trigger for ME/CFS: Severity Biomarkers and Underlying Mechanisms”. The talk can be rewatched on Solve ME/CFS’s YouTube channel.
Video here Thread here
Norway The video is available on YouTube of the recent conference presentation: "Defective energy metabolism in ME/CFS" by Karl Johan Tronstad from the ME Research Group at University of Bergen and Haukeland University Hospital. Duration 35 minutes.
Video here Thread here
...................
Research
BioRxiv preprint
"Single-cell transcriptomics of the immune system in ME/CFS at baseline and following symptom provocation" by Ahmed, Hanson et al.
Tests before and after exercise on ME/CFS patients and controls found between group differences related to classical monocytes and platelets.
Preprint here Thread here
Nature - Molecular Psychiatry
"Long-COVID post-viral chronic fatigue and affective symptoms are associated with oxidative damage, lowered antioxidant defenses and inflammation: a proof of concept and mechanism study" by Maes et al.
Study compared 120 Long COVID individuals and 36 controls.
Paper here Thread here
Biopsychosocial Medicine
“Global prevalence of chronic fatigue syndrome among long COVID-19 patients: A systematic review and meta-analysis” by Salari et al.
The authors conducted a meta-analysis and report that 45% of COVID-19 patients had chronic fatigue syndrome. While they use the term ‘chronic fatigue syndrome’ they seem to mean chronic fatigue, rather than ME/CFS.
Article here Thread here
King's College London
“Applying latent class cluster analysis and data mining methods to identify classes of chronic fatigue syndrome patients that are predictive of treatment success” by Ben Clapperton.
This doctoral thesis used complex statistical techniques to look for variables that predicted a successful treatment outcome in patients with CFS. The data used came from the controversial PACE trial. The abstract does not describe any results that stood out.
Article here Thread here
Open Forum Infectious Diseases (Infectious Diseases Society of America)
"Long COVID and Post-infective Fatigue Syndrome: A Review" by Wyller, Moss-Morris, Crawley, Knoop, Lloyd et al
A group of clinicians who promote the biopsychosocial approach reviewed data on Long Covid and other post infectious fatigue syndromes, emphasising psychological factors. They avoid using the terms ME/CFS and PEM/PESE. While suggesting some biomedical tests in Long Covid, they emphasise their ideas about perpetuating factors include HPA axis (stress), and 'abnormal illness beliefs and behavioral changes such as activity patterns that are boom-bust or avoidant.'
Article here Thread here
JACC: Case Reports
“An Exercise Prescription as a Novel Management Strategy for Treatment of Long COVID” by Rudofker et al.
The authors report a case series of patients with long COVID whose symptoms improved or resolved with exercise and argue that long COVID is mostly due to cardiac deconditioning.
Article here Thread here
Journal of Economic Behavior & Organization
“Doctors’ attitudes toward specific medical conditions” by Scoles & Nicodemo.
The authors analyzed the language and words used by physicians on Reddit’s ”Medicine” subreddit (r/medicine) to comment on diverse illnesses. The results for ME/CFS included over four times more negative words than the results for depression.
Article here Thread here
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S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
Australia "Inquiry into Long COVID and Repeated COVID Infections" Submissions to this inquiry are invited. The closing date is 18th November.
Information here Thread here
Centrelink have released a draft of 'Proposed changes to the Disability Support Pension (DSP) Impairment Tables' which specifically mention ME/CFS and PEM.
'The department has developed an Explanation of Proposed Changes paper which provides details about the changes and a questionnaire to help you have your say' by 11th November.
Draft here Thread here
The New York Times "Protesters So Ill, They Couldn’t Get Arrested"
Article that talks about post-exertional malaise and the symptom exacerbation that ME/CFS and Long Covid patients got after attending the recent 2022 Millions Missing protest.
Article here Thread here
UK - BMJ "Activists demand more funds for ME research" A brief report of the demonstration outside the UK parliament organised by #MEAction.
Article here Thread here
New Zealand The Spinoff "If you get Long Covid, who's going to help?"
'...But despite the size of the long Covid health crisis, not to mention an estimated 25,000 New Zealanders with ME/CFS, we receive nothing from the Ministry of Health. Something has to change.'
Article here Thread here
David Tuller
Epidemiological Sleight-of-Hand: The Troubling Case of "medically Unexplained Symptoms"
Great talk by Tuller, organised by Hidden Epidemics, University of Cambridge, on "the trope of 'medically unexplained symptoms' (MUS) and the bolstering of research findings to support the tenuous inferences that surround them. The talk touched on a range of case studies, including ME/CFS, Long COVID, and POTS". Duration: 1 h 22min
Talk here Thread here
Trial by Error: So the Dog Ate Professor Crawley's Corrections AND Her Correspondence As Well
Tuller has alerted the UK's Health Research Authority that their request for Professor Crawley to correct 11 papers on ME has not been fully followed through. Bristol University says the journals were contacted and asked to make the changes, but there's no record of the communication.
Article here Thread here
Trial by Error: German Draft Report on ME/CFS Raises Alarms for Promoting CBT and GET
A repost of The European ME Coalition's (EMEC) statement concerning an ME report from the Institute for Quality and Efficiency in Health Care (IQWiG) from Germany which among other things promotes CBT and GET as treatments.
Article here Thread here
Trial by Error: The Seventh Anniversary of My Initial Effort to Debunk the Fraudulent PACE Trial
This month it's seven years ago since Tuller published his 15.000-word investigation "of the egregiously flawed and fraudulent piece of crap known as the PACE trial".
Article here Thread here
UK - The Daily Telegraph Could long Covid hold the key to curing chronic fatigue?
Article about the newly published book "The Long Covid Handbook" by Gez Medinger and Dr. Danny Altmann. The article provides good background information about ME and how it's been neglected. Medinger says: "My great hope is that if there's one good thing that comes out of long Covid blighting our world is that in the process of trying to crack it, we will crack ME/CFS too. It's been a travesty - the gaslighting, dismissal and minimisation. But we have an opportunity to do something about it".
Tweet with article here Thread here
Norway The newspaper Morgenbladet had an article about a recent seminar in Oslo for researchers with a biopsychosocial approach to ME. The organisor Professor Reme felt they needed security guards and police on stand-by because she believes patients are out to get them. Professor Emeritus Rolf Rønning wrote an opinion piece for the same newspaper saying the only thing the biopsychosocial ME-movement has to fear is acceptance that their approach is outdated.
Article here Opinion piece here Thread here
TV2 has covered an ongoing research project about how ME patients are met in the health care system, and the results are shocking according to the researchers. The Prime Minister and the Minister of Health are not planning to do anything concrete to make matters better.
Article here Thread here
Professors Reme and Wyller and research director at the Norwegian Institute for public health, Flottorp, wrote an opinion piece in Aftenposten saying that ME often resolves by itself and that GET and CBT can make many ME patients recover. They also say it's dishonest to claim there's evidence for ME patients deteriorating from GET and CBT and further that there's no reason to avoid rehabilitation.
Patient advocates Nina E. Steinkopf and Jørn Tore Haugen responded in Aftenposten explaining the reason behind GET and CBT are being left as treatment approaches and saying it's harmful when professionals keep using outdated and refuted myths.
Reme et al's opinion piece here Steinkopf/Haugen's opinion piece here Thread here
Medscape I'm a Physician Battling Long COVID. I Can Assure You It's Real
Commentary by Monica Verduzzon Gutierrez, MD, where she tells of her experiences as Long Covid sufferer and urges more physicians should be trained in treating post infectious conditions.
Article here Thread here
The Long Covid Survival Guide
This book, subtitled "How to Take Care of Yourself and What Comes Next," is described as a "patient-to-patient guide for people living with Long COVID." The release date is November 8 but it's available for pre-order now.
Book Info here Thread here
...................
Fundraising
David Tuller Fundraising closes on Monday 31st October.
Crowdfunding here Thread here
...................
Useful resources
The ME Association Clinical & Research Guide 2022: Children & Adolescents
The MEA has made available as a download the 6 page chapter on children and adolescents from it's most recent Clinical and Research Guide. This includes sections on diagnosis, management, education and safeguarding.
Document here Thread here
.................
Research news and commentary
UK DecodeME Thousands more people in the UK diagnosed with ME/CFS and aged over 16 are needed to participate in this study. There are flyers you can print off on the website to hand out, and information on ways to share on social media to help spread the word.
Ways to share here Sign up here Thread here
Solve ME/CFS
On 24 October, ME/CFS researchers Carmen Scheibenbogen held a webinar titled “COVID-19 as a Trigger for ME/CFS: Severity Biomarkers and Underlying Mechanisms”. The talk can be rewatched on Solve ME/CFS’s YouTube channel.
Video here Thread here
Norway The video is available on YouTube of the recent conference presentation: "Defective energy metabolism in ME/CFS" by Karl Johan Tronstad from the ME Research Group at University of Bergen and Haukeland University Hospital. Duration 35 minutes.
Video here Thread here
...................
Research
BioRxiv preprint
"Single-cell transcriptomics of the immune system in ME/CFS at baseline and following symptom provocation" by Ahmed, Hanson et al.
Tests before and after exercise on ME/CFS patients and controls found between group differences related to classical monocytes and platelets.
Preprint here Thread here
Nature - Molecular Psychiatry
"Long-COVID post-viral chronic fatigue and affective symptoms are associated with oxidative damage, lowered antioxidant defenses and inflammation: a proof of concept and mechanism study" by Maes et al.
Study compared 120 Long COVID individuals and 36 controls.
Paper here Thread here
Biopsychosocial Medicine
“Global prevalence of chronic fatigue syndrome among long COVID-19 patients: A systematic review and meta-analysis” by Salari et al.
The authors conducted a meta-analysis and report that 45% of COVID-19 patients had chronic fatigue syndrome. While they use the term ‘chronic fatigue syndrome’ they seem to mean chronic fatigue, rather than ME/CFS.
Article here Thread here
King's College London
“Applying latent class cluster analysis and data mining methods to identify classes of chronic fatigue syndrome patients that are predictive of treatment success” by Ben Clapperton.
This doctoral thesis used complex statistical techniques to look for variables that predicted a successful treatment outcome in patients with CFS. The data used came from the controversial PACE trial. The abstract does not describe any results that stood out.
Article here Thread here
Open Forum Infectious Diseases (Infectious Diseases Society of America)
"Long COVID and Post-infective Fatigue Syndrome: A Review" by Wyller, Moss-Morris, Crawley, Knoop, Lloyd et al
A group of clinicians who promote the biopsychosocial approach reviewed data on Long Covid and other post infectious fatigue syndromes, emphasising psychological factors. They avoid using the terms ME/CFS and PEM/PESE. While suggesting some biomedical tests in Long Covid, they emphasise their ideas about perpetuating factors include HPA axis (stress), and 'abnormal illness beliefs and behavioral changes such as activity patterns that are boom-bust or avoidant.'
Article here Thread here
JACC: Case Reports
“An Exercise Prescription as a Novel Management Strategy for Treatment of Long COVID” by Rudofker et al.
The authors report a case series of patients with long COVID whose symptoms improved or resolved with exercise and argue that long COVID is mostly due to cardiac deconditioning.
Article here Thread here
Journal of Economic Behavior & Organization
“Doctors’ attitudes toward specific medical conditions” by Scoles & Nicodemo.
The authors analyzed the language and words used by physicians on Reddit’s ”Medicine” subreddit (r/medicine) to comment on diverse illnesses. The results for ME/CFS included over four times more negative words than the results for depression.
Article here Thread here
....................
S4ME social media: Facebook, Twitter and YouTube
Go to this thread for next month's news:
News in Brief - November 2022
News in Brief - November 2022