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News in Brief - November 2020
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Week beginning 2nd November 2020
News, articles, videos
UK NICE ME/CFS guideline The draft guideline is due to be published on Tuesday 10th November. Stakeholder organisations, including Science for ME, will be invited to respond. The consultation will begin on 10 November 2020 and end on 22 December 2020, and the new publication date is expected to be 21 April 2021.
Thread with link here
In Belgium, the Supreme Health Council has published its report on ME/CFS. Views about the report are mixed. The report cautions about graded exercise and pleads for more biomedical research. It says that PEM is now seen as an important characteristic of ME/CFS, rather than just fatigue and it advises the use of the IOM diagnostic criteria. The report also makes a plea for the biopsychosocial model and argues that this model should not be reduced to the cognitive-behavioural model.
Report here (in Dutch and French) Thread here
Dialogues for a neglected illness Two new high quality films by this project have been released. This time the focus is on "Patients' experiences" and provide more insight into the harsh reality of this disease through moving patient accounts. The films are:
Reduced Function (Duration 19 minutes)
How does the disease start? (Duration 27 minutes)
Website here Thread here
#MEAction UK have announced that they are no longer part of Forward-ME. They have also been removed as signatories of the recent Forward ME statement on spinal surgery and ME, following concern by some Forward ME members over Jen Brea's activity in this area.
#MEActionUK hope to continue to collaborate with other ME organisations, and state: 'Our aims over the coming months include submitting a robust response to NICE as part of their draft guideline consultation; continuing to reach out to the media to highlight the link between long-COVID and ME; and becoming a UK charity in our own right.'
Article here Thread here
Occupy ME: NIH Funding for ME in 2020: Falling Flat
New blog post from Jennie Spotila talking about the sad state of NIH research funding for 2020.
Blog here Thread here
ME/CFS skeptic: S4ME forum member Michiel Tack and European advocate Evelien Van Den brink have written an overview of positive developments in the worldwide ME/CFS community. They argue that “since 2015 significant progress is being made in the ME/CFS community and that advocates are achieving success worldwide.”
Article here Thread here
Solve ME/CFS Initiative 'October’s Fireside Zoom Chat features Citizen scientist, Marian Lemle and her collaboration with ME/CFS Researcher, Bindu Paul MSc, PhD., of Johns Hopkins University; showcasing the resolve of a loved one and her significant contribution to ME/CFS research and interest in Hydrogen Sulfide.' Duration 50 minutes.
Video here Thread here
UK - Forward ME now has its own website, including minutes of meetings and a list of linked organisations and associates.
Website here Thread here
ME Research UK Autumn newsletter, Breakthrough, is available. It includes reports on research they are funding, future plans, and research news from around the world.
Newsletter PDF here Thread here
...............
Trial by Error by David Tuller
No Links Between "Parental Separation" and Kids' ME Severity
A critical look at a recent, non peer reviewed, research report from, among others, pediatrician Terry Segal on whether parental separation predicts disease severity in young CFS/ME patients. No links were found and Tuller asks if they don't have better things to do.
Article here Thread here
...............
Research News
Call for journal submissions for special issue, "Biomarkers in Chronic Fatigue Syndrome (ME/CFS)", Biomolecules journal, Guest editor Dr. Bhupesh K. Prusty. Deadline 30th June 2021.
'...original research and review articles on any aspect of biomarker identification, biomarker characterization, or translational approaches of clinical relevance ... aims to bring ideas from different fields of science to one common platform that may stimulate further research and solve a modern day clinical mystery.'
Details here Thread here
Canada: Promising Research Underway at Montréal Research Center
An update discussing the research being done by the OMF-established ME/CFS Collaborative Research Center (CRC) at Université de Montréal.
Article here Thread here
Research participants wanted "Investigating sensory processing and cognitive function in people with ME: a pilot study" is recruiting participants for an online interview about sensory sensitivities. Dr Yazdani, Oxford Brookes University.
Thread with contact details here
......................
Biomedical research
Clinical Epigenetics
"Changes in DNA methylation profiles of ME/CFS patients reflect systemic dysfunctions" by Helliwell, Tate et al.
In this New Zealand study with 10 patients and 10 matched controls, 'Major differences were identified in the DNA methylation patterns of ME/CFS patients that clearly distinguished them from the healthy controls.' The authors conclude that 'a number of enriched neurotransmitter and neuropeptide reactome pathways highlighted a disturbed neurological pathophysiology within the patient group.'
Paper here Thread here
...............
Other research
Archives of Disease in Childhood
“A cohort study of whether parental separation and lack of contact with a parent predicts disease severity at diagnosis in young peoples chronic fatigue syndrome/myalgic encephalomyelitis” by O’ Donnell et al.
In this abstract, the authors report to have studied whether ME/CFS patients with parental separation and lack of contact with a parent have an increased disease severity. They looked at data of 123 patients. There was no difference in disease severity for the group who lacked contact with at least one parent or the group who had separated parents.
Abstract here Thread here
Archives of Disease in Childhood
“Adolescents and their parents’ experiences of internet delivered home treatment for chronic fatigue syndrome/me (fitnet-NHS trial)” by Parslow et al.
In this study, the authors conducted “in-depth qualitative interviews were undertaken with families taking part in the FITNET-NHS Trial to understand the acceptability of receiving treatment at home via the internet. In this abstract, the authors report that therapist contact was viewed as essential to provide specialist knowledge and support.
Article here Thread here
British Journal of Occupational Therapy
“Lived experiences in daily life with myalgic encephalomyelitis” by Sandhu et al.
In this study, the authors conducted in-depth qualitative interviews with seven adult persons with myalgic encephalomyelitis in Denmark. Pacing and environmental changes were the preferred coping strategies but these were not sufficient to secure a successful occupational adaptation.
Article here Thread here
...............
Coming events
Norway The Norwegian ME Association presents a knowledge campaign each November. This year's theme is "Children and adolescents with ME". The campaign includes several webinars about family, school and social life and also a webinar in English by Prof. Peter Rowe titled: Management of paediatric ME/CFS: insights from the Johns Hopkins clinic.
More information and registration here (in Norwegian) Thread here
UK Sussex based ME organisation, reMEmber, annual conference via Zoom Saturday 14th November, tickets £5. Several doctors including Charles Shepherd have been invited as speakers.
Details here Thread here
Massachusetts ME/CFS & FM Association: Research Club Support Group
Roshan Kumar, PHD will discuss recent studies looking at abnormalities in metabolism in ME/CFS patients. Sunday, Nov 22, 2020 05:00 PM Eastern Time (US and Canada)
Register here Thread here
Solve ME/CFS Webinar "Characterization of Post–exertional Malaise (PEM): Findings from a New Publication from NIH", Dec 2 6:00pm GMT.
Join lead author Barbara Stussman and co-author Dr. Brian Walitt of the NIH in a conversation about the 'important findings' of their research on PEM published in September, and 'their impact on the next chapter of ME/CFS research'.
Register here Thread here
................
Covid-19 and ME
The Daily Mail "Coronavirus: Children are now being hit by 'long Covid' symptoms too"
Interviews with, among others, Dr. Nigel Speight who says: "This is a massive blind spot. If adults can have long Covid, then children can too" and Dr. Charles Shepherd who says: "These children deserve to be listened to".
Article here Thread here
#MEAction UK Press Release: "COVID-19 Patients Are At Risk Of Developing Myalgic Encephalomyelitis"
Draws parallels between long Covid and other post viral illnesses including ME, and warns against exercise for those with post exertional malaise. They have written to the UK government Health Secretary, and #MEAction Scotland feature in a Sunday Express article warning about the dangers of exercise in covid rehabilitation programs.
Article here Thread here
#MEAction USA: "Meet the Long Haulers Developing ME/CFS"
#MEAction sent a press release to 300 major publications in the US to discuss COVID-19 "long hauler" patients and how many of these patients may end up developing ME.
Article here Thread here
UK Pre-announcement: Researching long-term COVID-19 effects in non-hospitalised individuals. 'NIHR and UKRI will be advertising a joint research call in early November, for projects starting in the New Year. The primary aim will be to fund ambitious and comprehensive research into the longer term, physical and mental effects of COVID-19 in non-hospitalised individuals.'
Information here Thread here
U.S. ME/CFS Clinician Coalition "Post-COVID "Long Haulers" and ME/CFS"
Open letter about the concern of COVID "Long Haulers" developing ME/CFS and a recommendation that ME/CFS is considered as a differential diagnosis of these patients.
Open letter here Thread here
Other items of interest
BMJ "Virology, transmission, and pathogenesis of SARS-CoV-2; comparison of post viral symptoms in previous outbreaks" Rapid Response by Dr. Derek Enlander
Response here Thread here
The Guardian "I had long Covid - but not everyone gets time to recover"
Opinion piece here Thread here
Neurology Today "Hundreds of 'Long Haulers' Present with Neurologic Complaints at Post-COVID-19 Clinics"
Article here Thread here
BBC "BBC correspondent: 'Long Covid has left me exhausted for seven months'"
Article here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
News, articles, videos
UK NICE ME/CFS guideline The draft guideline is due to be published on Tuesday 10th November. Stakeholder organisations, including Science for ME, will be invited to respond. The consultation will begin on 10 November 2020 and end on 22 December 2020, and the new publication date is expected to be 21 April 2021.
Thread with link here
In Belgium, the Supreme Health Council has published its report on ME/CFS. Views about the report are mixed. The report cautions about graded exercise and pleads for more biomedical research. It says that PEM is now seen as an important characteristic of ME/CFS, rather than just fatigue and it advises the use of the IOM diagnostic criteria. The report also makes a plea for the biopsychosocial model and argues that this model should not be reduced to the cognitive-behavioural model.
Report here (in Dutch and French) Thread here
Dialogues for a neglected illness Two new high quality films by this project have been released. This time the focus is on "Patients' experiences" and provide more insight into the harsh reality of this disease through moving patient accounts. The films are:
Reduced Function (Duration 19 minutes)
How does the disease start? (Duration 27 minutes)
Website here Thread here
#MEAction UK have announced that they are no longer part of Forward-ME. They have also been removed as signatories of the recent Forward ME statement on spinal surgery and ME, following concern by some Forward ME members over Jen Brea's activity in this area.
#MEActionUK hope to continue to collaborate with other ME organisations, and state: 'Our aims over the coming months include submitting a robust response to NICE as part of their draft guideline consultation; continuing to reach out to the media to highlight the link between long-COVID and ME; and becoming a UK charity in our own right.'
Article here Thread here
Occupy ME: NIH Funding for ME in 2020: Falling Flat
New blog post from Jennie Spotila talking about the sad state of NIH research funding for 2020.
Blog here Thread here
ME/CFS skeptic: S4ME forum member Michiel Tack and European advocate Evelien Van Den brink have written an overview of positive developments in the worldwide ME/CFS community. They argue that “since 2015 significant progress is being made in the ME/CFS community and that advocates are achieving success worldwide.”
Article here Thread here
Solve ME/CFS Initiative 'October’s Fireside Zoom Chat features Citizen scientist, Marian Lemle and her collaboration with ME/CFS Researcher, Bindu Paul MSc, PhD., of Johns Hopkins University; showcasing the resolve of a loved one and her significant contribution to ME/CFS research and interest in Hydrogen Sulfide.' Duration 50 minutes.
Video here Thread here
UK - Forward ME now has its own website, including minutes of meetings and a list of linked organisations and associates.
Website here Thread here
ME Research UK Autumn newsletter, Breakthrough, is available. It includes reports on research they are funding, future plans, and research news from around the world.
Newsletter PDF here Thread here
...............
Trial by Error by David Tuller
No Links Between "Parental Separation" and Kids' ME Severity
A critical look at a recent, non peer reviewed, research report from, among others, pediatrician Terry Segal on whether parental separation predicts disease severity in young CFS/ME patients. No links were found and Tuller asks if they don't have better things to do.
Article here Thread here
...............
Research News
Call for journal submissions for special issue, "Biomarkers in Chronic Fatigue Syndrome (ME/CFS)", Biomolecules journal, Guest editor Dr. Bhupesh K. Prusty. Deadline 30th June 2021.
'...original research and review articles on any aspect of biomarker identification, biomarker characterization, or translational approaches of clinical relevance ... aims to bring ideas from different fields of science to one common platform that may stimulate further research and solve a modern day clinical mystery.'
Details here Thread here
Canada: Promising Research Underway at Montréal Research Center
An update discussing the research being done by the OMF-established ME/CFS Collaborative Research Center (CRC) at Université de Montréal.
Article here Thread here
Research participants wanted "Investigating sensory processing and cognitive function in people with ME: a pilot study" is recruiting participants for an online interview about sensory sensitivities. Dr Yazdani, Oxford Brookes University.
Thread with contact details here
......................
Biomedical research
Clinical Epigenetics
"Changes in DNA methylation profiles of ME/CFS patients reflect systemic dysfunctions" by Helliwell, Tate et al.
In this New Zealand study with 10 patients and 10 matched controls, 'Major differences were identified in the DNA methylation patterns of ME/CFS patients that clearly distinguished them from the healthy controls.' The authors conclude that 'a number of enriched neurotransmitter and neuropeptide reactome pathways highlighted a disturbed neurological pathophysiology within the patient group.'
Paper here Thread here
...............
Other research
Archives of Disease in Childhood
“A cohort study of whether parental separation and lack of contact with a parent predicts disease severity at diagnosis in young peoples chronic fatigue syndrome/myalgic encephalomyelitis” by O’ Donnell et al.
In this abstract, the authors report to have studied whether ME/CFS patients with parental separation and lack of contact with a parent have an increased disease severity. They looked at data of 123 patients. There was no difference in disease severity for the group who lacked contact with at least one parent or the group who had separated parents.
Abstract here Thread here
Archives of Disease in Childhood
“Adolescents and their parents’ experiences of internet delivered home treatment for chronic fatigue syndrome/me (fitnet-NHS trial)” by Parslow et al.
In this study, the authors conducted “in-depth qualitative interviews were undertaken with families taking part in the FITNET-NHS Trial to understand the acceptability of receiving treatment at home via the internet. In this abstract, the authors report that therapist contact was viewed as essential to provide specialist knowledge and support.
Article here Thread here
British Journal of Occupational Therapy
“Lived experiences in daily life with myalgic encephalomyelitis” by Sandhu et al.
In this study, the authors conducted in-depth qualitative interviews with seven adult persons with myalgic encephalomyelitis in Denmark. Pacing and environmental changes were the preferred coping strategies but these were not sufficient to secure a successful occupational adaptation.
Article here Thread here
...............
Coming events
Norway The Norwegian ME Association presents a knowledge campaign each November. This year's theme is "Children and adolescents with ME". The campaign includes several webinars about family, school and social life and also a webinar in English by Prof. Peter Rowe titled: Management of paediatric ME/CFS: insights from the Johns Hopkins clinic.
More information and registration here (in Norwegian) Thread here
UK Sussex based ME organisation, reMEmber, annual conference via Zoom Saturday 14th November, tickets £5. Several doctors including Charles Shepherd have been invited as speakers.
Details here Thread here
Massachusetts ME/CFS & FM Association: Research Club Support Group
Roshan Kumar, PHD will discuss recent studies looking at abnormalities in metabolism in ME/CFS patients. Sunday, Nov 22, 2020 05:00 PM Eastern Time (US and Canada)
Register here Thread here
Solve ME/CFS Webinar "Characterization of Post–exertional Malaise (PEM): Findings from a New Publication from NIH", Dec 2 6:00pm GMT.
Join lead author Barbara Stussman and co-author Dr. Brian Walitt of the NIH in a conversation about the 'important findings' of their research on PEM published in September, and 'their impact on the next chapter of ME/CFS research'.
Register here Thread here
................
Covid-19 and ME
The Daily Mail "Coronavirus: Children are now being hit by 'long Covid' symptoms too"
Interviews with, among others, Dr. Nigel Speight who says: "This is a massive blind spot. If adults can have long Covid, then children can too" and Dr. Charles Shepherd who says: "These children deserve to be listened to".
Article here Thread here
#MEAction UK Press Release: "COVID-19 Patients Are At Risk Of Developing Myalgic Encephalomyelitis"
Draws parallels between long Covid and other post viral illnesses including ME, and warns against exercise for those with post exertional malaise. They have written to the UK government Health Secretary, and #MEAction Scotland feature in a Sunday Express article warning about the dangers of exercise in covid rehabilitation programs.
Article here Thread here
#MEAction USA: "Meet the Long Haulers Developing ME/CFS"
#MEAction sent a press release to 300 major publications in the US to discuss COVID-19 "long hauler" patients and how many of these patients may end up developing ME.
Article here Thread here
UK Pre-announcement: Researching long-term COVID-19 effects in non-hospitalised individuals. 'NIHR and UKRI will be advertising a joint research call in early November, for projects starting in the New Year. The primary aim will be to fund ambitious and comprehensive research into the longer term, physical and mental effects of COVID-19 in non-hospitalised individuals.'
Information here Thread here
U.S. ME/CFS Clinician Coalition "Post-COVID "Long Haulers" and ME/CFS"
Open letter about the concern of COVID "Long Haulers" developing ME/CFS and a recommendation that ME/CFS is considered as a differential diagnosis of these patients.
Open letter here Thread here
Other items of interest
BMJ "Virology, transmission, and pathogenesis of SARS-CoV-2; comparison of post viral symptoms in previous outbreaks" Rapid Response by Dr. Derek Enlander
Response here Thread here
The Guardian "I had long Covid - but not everyone gets time to recover"
Opinion piece here Thread here
Neurology Today "Hundreds of 'Long Haulers' Present with Neurologic Complaints at Post-COVID-19 Clinics"
Article here Thread here
BBC "BBC correspondent: 'Long Covid has left me exhausted for seven months'"
Article here Thread here
.................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 9th November 2020
Headline news
New draft NICE guideline for ME/CFS
The draft NICE guideline for ME/CFS has been published for a 6 week consultation period. The guideline has been generally welcomed by patient organisations, with its removal of Graded Exercise Therapy and removal of directive CBT that aims to change illness beliefs. The guideline recommends activity management to stay within the energy envelope and avoid PEM. It includes sections on severe and very severe ME/CFS, and ME/CFS in children.
There are still some points of disagreement which Science for ME members are discussing on the forum in preparation for a submission to the consultation. Other UK ME organisations are inviting people with ME to contribute to their responses too.
Draft Guideline here
NICE consultation page (including links to Evidence Reviews and Supporting Documentation and how to respond) here
Statement from NICE here
Professor Jonathan Edwards' and Dr Nina Muirhead's Expert Testimonies here
Summary of the guideline by Michiel Tack here
Responses
Media, blogs and ME organisations have published initial responses to the draft guideline. The removal of GET and directive CBT have been welcomed by ME organisations. Media response is mixed with some quoting the welcome from patients, and some the protests and continuing support for GET from its leading proponents in a Science Media Centre press statement. Some examples are listed below:
ME Association here MEActionUK here Invest in ME here
Action for ME article here survey here
Trial by Error by David Tuller here The Science Bit by Brian Hughes here
Centre for Welfare Reform here Science Media Centre here
The Guardian here The Times linked here The Telegraph here
Steve Topple in The Canary here
Medscape here British Medical Journal here and here The Pharmaceutical Journal here
Thread with links to further discussion threads here
....................
Other news, articles, videos
WHO classification
The World Health Organization (WHO) has finally decided to remove "Benign" from "Benign myalgic encephalomyelitis" in the 11th version of the International Classification of Diseases (ICD). Proposals to remove the term ‘benign’ from this classification were rejected but patient advocate Suzy Chapman submitted a new proposal earlier this year, that eventually was approved on 10 November 2020.
Thread here and here
Finland The Finnish Medical Society Duodecim has published their ME/CFS draft guideline recommending among other diagnostic criteria that includes PEM and usage of individual plans for exercise and rest. Deadline for comments is 4th December.
Guideline draft here (in Finnish) Thread here
USA The CDC has awarded Medscape Education three contracts to develop medical education programming. One of the topics is ME/CFS. The activities will be hosted at www.medscape.org and will be available for continuing education credit.
Article here Thread here
The Chronic Illness Inclusion Project
"Turning the Remote Access Revolution into Reasonable Adjustments"
The Chronic Illness Inclusion Project (CIIP) has published guidance on including disabled people in face-to-face meetings using videoconferencing technology. CIIP is hosted by the Centre for Welfare Reform and is part of Citizen Network.
Report here Thread here
USA #MEAction: Jennifer Brea will be stepping down as executive director of #MEAction and transitioning to a position on the board.
Article here Thread here
UK - Job vacancies
ME Association Webmaster to run the website. Part time.
Details here Thread here
Action for ME Crisis support and advocacy officer, and Administrator. Both part time.
Details here Thread here
................
Research news
Video "CAI Seminar Series: Detection of brain dysfunction in CFS using multimodal brain MRI" presented by Dr Leighton Barnden, National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Australia. Duration: 42 minutes.
Video here Thread here
MDPI call for articles
The International Journal of Environmental Research and Public Health has opened a call for manuscripts for a special issue “Chronic fatigue syndrome: Medical, Nursing and public health management.” The special issue editors are Australian researchers Professor Sonya Marshall- Gradisnik and Professor Donald Staines. Manuscripts are accepted up until 31 August 2021.
Announcement here Thread here
Qualitative Health Research
“Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME” by Cheshire et al.
The research team of Prof. Peter White conducted semi-structured interviews with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention in the GETSET-study. The authors explored how patients see recovery and conclude that “recovery is not always about eliminating all symptoms.”
Article here Thread here
.................
Coming Events
The Netherlands
ZonMw, the Dutch agency for health research and innovation is organizing a national conference on ME/CFS on 19 November. The conference will mainly be in Dutch. However, key notes on the current state of research on ME/CFS by scientists from abroad will be in English. Speakers include Anthony Komaroff, Michael Van Elzakker and Jonas Bergquist. Subtitled recordings of the full conference will be made available in the near future.
Article here Thread here
..................
Covid-19 and ME
This Week In Virology "Long-term COVID and ME/CFS"
Podcast hosted by Prof. Vincent Racaniello. "Mady Hornig, Fiona Lowenstein, and David Tuller join TWiV to discuss patients with long-term COVID and similarities and differences with ME/CFS". Duration: 1h 52min.
Podcast here Thread here
Other items of interest
tes "Long Covid: what teachers and pupils need to know"
Article here Thread here
ABC News "Doctors examining possible link between chronic fatigue syndrome and COVID-19"
Article here Thread here
Nature "Long COVID: don't consign ME/CFS to history" by Peter White
Comment here Thread here
The Current "COVID long haulers: NSU researchers looking into the long-sustained impacts of COVID-19"
Article here Thread here
BBC "Covid in Scotland: No clinics for thousands of 'long Covid' patients"
Article here Thread here
WSWS "Long-COVID post-viral syndrome: Lessons from the Russian Flu of 1889 for the COVID pandemic"
Article here Thread here
The Union "COVID-19 and chronic fatigue syndrome" by Jonathan Hawkins
Column here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
Headline news
New draft NICE guideline for ME/CFS
The draft NICE guideline for ME/CFS has been published for a 6 week consultation period. The guideline has been generally welcomed by patient organisations, with its removal of Graded Exercise Therapy and removal of directive CBT that aims to change illness beliefs. The guideline recommends activity management to stay within the energy envelope and avoid PEM. It includes sections on severe and very severe ME/CFS, and ME/CFS in children.
There are still some points of disagreement which Science for ME members are discussing on the forum in preparation for a submission to the consultation. Other UK ME organisations are inviting people with ME to contribute to their responses too.
Draft Guideline here
NICE consultation page (including links to Evidence Reviews and Supporting Documentation and how to respond) here
Statement from NICE here
Professor Jonathan Edwards' and Dr Nina Muirhead's Expert Testimonies here
Summary of the guideline by Michiel Tack here
Responses
Media, blogs and ME organisations have published initial responses to the draft guideline. The removal of GET and directive CBT have been welcomed by ME organisations. Media response is mixed with some quoting the welcome from patients, and some the protests and continuing support for GET from its leading proponents in a Science Media Centre press statement. Some examples are listed below:
ME Association here MEActionUK here Invest in ME here
Action for ME article here survey here
Trial by Error by David Tuller here The Science Bit by Brian Hughes here
Centre for Welfare Reform here Science Media Centre here
The Guardian here The Times linked here The Telegraph here
Steve Topple in The Canary here
Medscape here British Medical Journal here and here The Pharmaceutical Journal here
Thread with links to further discussion threads here
....................
Other news, articles, videos
WHO classification
The World Health Organization (WHO) has finally decided to remove "Benign" from "Benign myalgic encephalomyelitis" in the 11th version of the International Classification of Diseases (ICD). Proposals to remove the term ‘benign’ from this classification were rejected but patient advocate Suzy Chapman submitted a new proposal earlier this year, that eventually was approved on 10 November 2020.
Thread here and here
Finland The Finnish Medical Society Duodecim has published their ME/CFS draft guideline recommending among other diagnostic criteria that includes PEM and usage of individual plans for exercise and rest. Deadline for comments is 4th December.
Guideline draft here (in Finnish) Thread here
USA The CDC has awarded Medscape Education three contracts to develop medical education programming. One of the topics is ME/CFS. The activities will be hosted at www.medscape.org and will be available for continuing education credit.
Article here Thread here
The Chronic Illness Inclusion Project
"Turning the Remote Access Revolution into Reasonable Adjustments"
The Chronic Illness Inclusion Project (CIIP) has published guidance on including disabled people in face-to-face meetings using videoconferencing technology. CIIP is hosted by the Centre for Welfare Reform and is part of Citizen Network.
Report here Thread here
USA #MEAction: Jennifer Brea will be stepping down as executive director of #MEAction and transitioning to a position on the board.
Article here Thread here
UK - Job vacancies
ME Association Webmaster to run the website. Part time.
Details here Thread here
Action for ME Crisis support and advocacy officer, and Administrator. Both part time.
Details here Thread here
................
Research news
Video "CAI Seminar Series: Detection of brain dysfunction in CFS using multimodal brain MRI" presented by Dr Leighton Barnden, National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Australia. Duration: 42 minutes.
Video here Thread here
MDPI call for articles
The International Journal of Environmental Research and Public Health has opened a call for manuscripts for a special issue “Chronic fatigue syndrome: Medical, Nursing and public health management.” The special issue editors are Australian researchers Professor Sonya Marshall- Gradisnik and Professor Donald Staines. Manuscripts are accepted up until 31 August 2021.
Announcement here Thread here
Qualitative Health Research
“Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME” by Cheshire et al.
The research team of Prof. Peter White conducted semi-structured interviews with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention in the GETSET-study. The authors explored how patients see recovery and conclude that “recovery is not always about eliminating all symptoms.”
Article here Thread here
.................
Coming Events
The Netherlands
ZonMw, the Dutch agency for health research and innovation is organizing a national conference on ME/CFS on 19 November. The conference will mainly be in Dutch. However, key notes on the current state of research on ME/CFS by scientists from abroad will be in English. Speakers include Anthony Komaroff, Michael Van Elzakker and Jonas Bergquist. Subtitled recordings of the full conference will be made available in the near future.
Article here Thread here
..................
Covid-19 and ME
This Week In Virology "Long-term COVID and ME/CFS"
Podcast hosted by Prof. Vincent Racaniello. "Mady Hornig, Fiona Lowenstein, and David Tuller join TWiV to discuss patients with long-term COVID and similarities and differences with ME/CFS". Duration: 1h 52min.
Podcast here Thread here
Other items of interest
tes "Long Covid: what teachers and pupils need to know"
Article here Thread here
ABC News "Doctors examining possible link between chronic fatigue syndrome and COVID-19"
Article here Thread here
Nature "Long COVID: don't consign ME/CFS to history" by Peter White
Comment here Thread here
The Current "COVID long haulers: NSU researchers looking into the long-sustained impacts of COVID-19"
Article here Thread here
BBC "Covid in Scotland: No clinics for thousands of 'long Covid' patients"
Article here Thread here
WSWS "Long-COVID post-viral syndrome: Lessons from the Russian Flu of 1889 for the COVID pandemic"
Article here Thread here
The Union "COVID-19 and chronic fatigue syndrome" by Jonathan Hawkins
Column here Thread here
.....................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 16th November 2020
More responses to the draft NICE ME/CFS guideline
STAT "Proposed British guidelines reject useless chronic fatigue syndrome treatments"
Excellent opinion piece by David Tuller and Steven Lubet. "Clinical guidelines developed by NICE are influential in medical practice around the world, including in the U.S. Its new draft on ME/CFS is a long-overdue and much-needed corrective to years of misguided and potentially harmful recommendations."
Article here Thread here
The Science Bit "No more Mr NICE Guy..."
Brilliant summary by psychology professor Brian Hughes. "This is not just a turning point for people with ME, CFS, and related conditions — it is a high-profile exposure of exactly how, for years, entire subfields of the psychological sciences have been willing to overlook, if not embrace, shoddy standards."
Article here Thread here
Trial by Error by David Tuller "The Science Media Centre and UK's Coverage of New NICE Draft"
A summary and analysis of the press coverage of the draft guidelines for ME/CFS, including from the SMC.
Article here Thread here
CBT Watch "CBT Is Not A Treatment Or Cure for ME/CFS" by Dr Mike Scott.
'IAPT assesses the competence of its CFS clinicians, in part, by whether they explain the CBT model of MUS. They need an urgent rethink. ... 'Professor Jonathan Edwards submission to the NICE guideline Committee is a must read he highlights the importance of support over treatment.' ... 'His is a clarion call for basic humanity, being with people rather than believing that everything is fixable, walking the road with them. This should not be put under a CBT umbrella, to do so is a gross imperialism.'
Article here Thread here
The BMJ article reported last week, which can be read in full here, now has excellent rapid responses raising important points, including the lack of research funding, the outdated Cochrane reviews, and challenging the views of the CBT/GET supporters.
Andrew Devereux-Cooke (@Andy) here, Robert Saunders (@Robert 1973) here and @Caroline Struthers here Thread here and here
#MEAction UK “Loopholes Need Closing” – ME/CFS Draft Guideline Community Discussion was held online with 50 participants. You can sign up for the next discussion on Monday 23rd November at 8pm. These will contribute to the #MEAction UK’s response to NICE’s consultation on the draft guideline.
Article here Thread here
Norway Thorough article about the NICE guideline draft titled "Major changes in recommendation for the treatment of ME in the UK" on a news site about research.
Article here Thread here
..................
News, articles and videos
Dialogues for a neglected illness "Activity and Energy Management - Pacing"
Another excellent film from this project about ME. This time on pacing, with contributions from Mark VanNess, Todd Davenport, Charles Shepherd, Luis Nacul and two biobank donors. Duration: 15 minutes.
Film here Thread here
Jonas Bergquist A private clinic for functional medicine in Sweden has done an interview in English with professor Jonas Bergquist about ME and his research into the disease. Duration: 57 minutes
Interview here Thread here
Sheffield ME & Fibromyalgia Group
Dr Diane O'Leary, philosopher and bioethicist, gave an online talk entitled:
"Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid". A recording of the talk will be made available.
Thread with links here
Myriad Editions "My Bookish Life with... Paula Knight"
Interview with Paula Knight, author of comic book "The Facts of Life" (2012) and severe ME sufferer. "graphics author Paula Knight talks to us about living with ME during lockdown, scavenging foxes, and bed-bound diaries"
Interview here Thread here
Norway The Norwegian ME Association is launching a bi weekly news summary in Norwegian on their website.
News summary for week 46 and 47 here Thread here
Solve ME/CFS Chronicle
The Fall 2020 issue of the Solve ME/CFS Chronicle, the group's quarterly newsletter, is now available.
PDF version here Thread here
Trial by Error by David Tuller "Jennie Spotila's Annual Review of NIH Funding"
A repost of Jennie Spotila's recent annual analysis for NIH funding for ME at the blog Occupy M.E. "NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead."
Article here Thread here
..............
Biomedical research
Fatigue, Biomedicine, Health and Behavior
"A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise" by Colter, Jason et al.
216 ME/CFS patients attending an outpatient clinic for a 2 day cardiopulmonary exercise test had their respiratory rates measured on 2 consecutive days. The results showed that 'PEM was a significant predictor of tachypnea (rapid respiratory rate), while psychological/somatic assessments and sedentary behaviors were not significantly predictive of tachypnea.' The authors conclude: 'These findings suggest that respiratory rate may be useful as an objective clinical metric of PEM, and potentially ME/CFS.'
Paper here Thread here
Nature - Scientific Reports
"Profile of circulating microRNAs in ME and their relation to symptom severity, and disease pathophysiology" by Moreau et al.
Blood samples were taken from 11 ME/CFS patients and 8 matched controls, and a replication cohort of 32 ME/CFS and 17 controls, before and after a 90 minute 'post-exertional stress challenge' using an arm massager.
From the abstract: 'The present study uncovers specific microRNA expression signatures associated with ME/CFS in response to PEM induction and reports microRNA expression patterns associated to specific symptom severities.'
Paper here Thread here
Nature - Scientific Reports
"Deep phenotyping of ME/CFS in Japanese population" by Kitami et al.
A study of 48 patients and 52 controls found 26 potential distinguishing biomarkers. From the abstract: 'Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers.' '...we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.' They conclude that 'Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.'
Paper here Thread here
Frontiers in Immunology
"Impact of Long-Term Cryopreservation on Blood Immune Cell Markers in ME/CFS: Implications for Biomarker Discovery" by Gómez-Mora et al.
From the abstract: 'A correlation analysis of marker cryostability across immune cell subsets based on flow cytometry immunophenotyping of fresh blood and frozen PBMC samples collected from individuals with ME/CFS (n = 18) and matched healthy controls (n = 18) was performed.' Some markers were found to be stable after freezing but others were not. 'Our findings show that some of the previously identified immune markers in T and NK cell subsets become unstable after cell biobanking, thus limiting their use in further immunophenotyping studies for ME/CFS.' The authors point to the importance of this finding for future multicentre studies using biobanked samples.
Paper here Thread here
..............
Other research
Mayo Clinic Proceedings
“Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19” by Mohabbat et al.
In this commentary, physicians from Mayo Clinic write that fibromyalgia and CFS “although medically distinct, share a common pathophysiological etiology: central sensitization (CS).” The authors argue that patients suffering from these conditions may be extra vulnerable for stressors and isolation caused by the coronacrisis. They recommend treatments including CBT and graded exercise therapy.
Article here Thread here
Journal of Psychosomatic Research
In this Dutch study, 50 ME/CFS patients were followed up using ecological momentary assessment (EMA). 22 behaviours, cognitions and affects, were measured, including actigraphy, to look for factors that might perpetuate fatigue. Two perpetuating components were found in individual patients: “psychological discomfort” and “activity”. For the total patient group, however, both perpetuating components did not predict fatigue on a following time-point.
Article here Thread here
.................
Advocacy
#MEAction is looking to hire a new Executive Director. Applicants must live in the USA. To be considered submit an online application by December 15, 2020.
Details here Thread here
.................
Coming events
Czech Republic A webinar about clinical aspects of ME/CFS will be held on 25 November 2020 at the Institute of Postgraduate Medical Education in Prague. Talks in English will include Susan Levine, Betsy Keller, and Kristian Sommerfelt.
Announcement here Thread here
USA - NIAID-hosted workshop: "Workshop on Post-Acute Sequelae of COVID-19"
Registration is now open for a two day virtual workshop, December 3 & 4, 2020, from 10:00 am to 5:00 pm Eastern Time.
Register here Thread here
.................
Fundraising
USA The Solve ME/CFS Initiative (Solve M.E.) announced a $500,000 matching grant as part of their #GivingTuesday campaign. Solve M.E. board members have promised to match all gifts made before midnight on December 31st up to $500,000.
Donate here Thread here
.................
Covid-19 and ME
Open Medicine Foundation
OMF announced an anonymous, $1,000,000 grant to fund research into the relationship between COVID-19 and the possible trajectory to ME/CFS. The study will be conducted at the internationally-based Collaborative Research Centers.
Announcement here Thread here
The Guardian "Long Covid: overlap emerges with ME - including debate over treatment"
On similarities between ME and Long Covid. Interview with Dr. and patient Amy Small who raises concerns about graded exercise therapy as treatment approach. Consultant in rehabilitation medicine Dr. Manoj Sivan believes "future research will look into targeting specific rehabilitation approaches to specific subgroups".
Article here Thread here
Physios for ME "Cardio-Respiratory Rehab COVID19 Update: Goverment Update and When not to Exercise". A zoom presentation to over 400 cardiorespiratory physios about rehab of long Covid, learning lessons from the ME population. Duration 1 hour.
Video here Thread here and here
Other items of interest
BBC radio Wales "The Long Tail - My Coronavirus Recovery"
Programme here Thread here
Edinburgh News "Doctor forced to give up her job after months of terrifying covid-19 symptoms call for one-stop clinics"
Article here Thread here
FiveThirtyEight "What We Know About 'Long COVID'" with among other Dr. Mady Hornig
Podcast here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
More responses to the draft NICE ME/CFS guideline
STAT "Proposed British guidelines reject useless chronic fatigue syndrome treatments"
Excellent opinion piece by David Tuller and Steven Lubet. "Clinical guidelines developed by NICE are influential in medical practice around the world, including in the U.S. Its new draft on ME/CFS is a long-overdue and much-needed corrective to years of misguided and potentially harmful recommendations."
Article here Thread here
The Science Bit "No more Mr NICE Guy..."
Brilliant summary by psychology professor Brian Hughes. "This is not just a turning point for people with ME, CFS, and related conditions — it is a high-profile exposure of exactly how, for years, entire subfields of the psychological sciences have been willing to overlook, if not embrace, shoddy standards."
Article here Thread here
Trial by Error by David Tuller "The Science Media Centre and UK's Coverage of New NICE Draft"
A summary and analysis of the press coverage of the draft guidelines for ME/CFS, including from the SMC.
Article here Thread here
CBT Watch "CBT Is Not A Treatment Or Cure for ME/CFS" by Dr Mike Scott.
'IAPT assesses the competence of its CFS clinicians, in part, by whether they explain the CBT model of MUS. They need an urgent rethink. ... 'Professor Jonathan Edwards submission to the NICE guideline Committee is a must read he highlights the importance of support over treatment.' ... 'His is a clarion call for basic humanity, being with people rather than believing that everything is fixable, walking the road with them. This should not be put under a CBT umbrella, to do so is a gross imperialism.'
Article here Thread here
The BMJ article reported last week, which can be read in full here, now has excellent rapid responses raising important points, including the lack of research funding, the outdated Cochrane reviews, and challenging the views of the CBT/GET supporters.
Andrew Devereux-Cooke (@Andy) here, Robert Saunders (@Robert 1973) here and @Caroline Struthers here Thread here and here
#MEAction UK “Loopholes Need Closing” – ME/CFS Draft Guideline Community Discussion was held online with 50 participants. You can sign up for the next discussion on Monday 23rd November at 8pm. These will contribute to the #MEAction UK’s response to NICE’s consultation on the draft guideline.
Article here Thread here
Norway Thorough article about the NICE guideline draft titled "Major changes in recommendation for the treatment of ME in the UK" on a news site about research.
Article here Thread here
..................
News, articles and videos
Dialogues for a neglected illness "Activity and Energy Management - Pacing"
Another excellent film from this project about ME. This time on pacing, with contributions from Mark VanNess, Todd Davenport, Charles Shepherd, Luis Nacul and two biobank donors. Duration: 15 minutes.
Film here Thread here
Jonas Bergquist A private clinic for functional medicine in Sweden has done an interview in English with professor Jonas Bergquist about ME and his research into the disease. Duration: 57 minutes
Interview here Thread here
Sheffield ME & Fibromyalgia Group
Dr Diane O'Leary, philosopher and bioethicist, gave an online talk entitled:
"Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid". A recording of the talk will be made available.
Thread with links here
Myriad Editions "My Bookish Life with... Paula Knight"
Interview with Paula Knight, author of comic book "The Facts of Life" (2012) and severe ME sufferer. "graphics author Paula Knight talks to us about living with ME during lockdown, scavenging foxes, and bed-bound diaries"
Interview here Thread here
Norway The Norwegian ME Association is launching a bi weekly news summary in Norwegian on their website.
News summary for week 46 and 47 here Thread here
Solve ME/CFS Chronicle
The Fall 2020 issue of the Solve ME/CFS Chronicle, the group's quarterly newsletter, is now available.
PDF version here Thread here
Trial by Error by David Tuller "Jennie Spotila's Annual Review of NIH Funding"
A repost of Jennie Spotila's recent annual analysis for NIH funding for ME at the blog Occupy M.E. "NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead."
Article here Thread here
..............
Biomedical research
Fatigue, Biomedicine, Health and Behavior
"A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise" by Colter, Jason et al.
216 ME/CFS patients attending an outpatient clinic for a 2 day cardiopulmonary exercise test had their respiratory rates measured on 2 consecutive days. The results showed that 'PEM was a significant predictor of tachypnea (rapid respiratory rate), while psychological/somatic assessments and sedentary behaviors were not significantly predictive of tachypnea.' The authors conclude: 'These findings suggest that respiratory rate may be useful as an objective clinical metric of PEM, and potentially ME/CFS.'
Paper here Thread here
Nature - Scientific Reports
"Profile of circulating microRNAs in ME and their relation to symptom severity, and disease pathophysiology" by Moreau et al.
Blood samples were taken from 11 ME/CFS patients and 8 matched controls, and a replication cohort of 32 ME/CFS and 17 controls, before and after a 90 minute 'post-exertional stress challenge' using an arm massager.
From the abstract: 'The present study uncovers specific microRNA expression signatures associated with ME/CFS in response to PEM induction and reports microRNA expression patterns associated to specific symptom severities.'
Paper here Thread here
Nature - Scientific Reports
"Deep phenotyping of ME/CFS in Japanese population" by Kitami et al.
A study of 48 patients and 52 controls found 26 potential distinguishing biomarkers. From the abstract: 'Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers.' '...we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.' They conclude that 'Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.'
Paper here Thread here
Frontiers in Immunology
"Impact of Long-Term Cryopreservation on Blood Immune Cell Markers in ME/CFS: Implications for Biomarker Discovery" by Gómez-Mora et al.
From the abstract: 'A correlation analysis of marker cryostability across immune cell subsets based on flow cytometry immunophenotyping of fresh blood and frozen PBMC samples collected from individuals with ME/CFS (n = 18) and matched healthy controls (n = 18) was performed.' Some markers were found to be stable after freezing but others were not. 'Our findings show that some of the previously identified immune markers in T and NK cell subsets become unstable after cell biobanking, thus limiting their use in further immunophenotyping studies for ME/CFS.' The authors point to the importance of this finding for future multicentre studies using biobanked samples.
Paper here Thread here
..............
Other research
Mayo Clinic Proceedings
“Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19” by Mohabbat et al.
In this commentary, physicians from Mayo Clinic write that fibromyalgia and CFS “although medically distinct, share a common pathophysiological etiology: central sensitization (CS).” The authors argue that patients suffering from these conditions may be extra vulnerable for stressors and isolation caused by the coronacrisis. They recommend treatments including CBT and graded exercise therapy.
Article here Thread here
Journal of Psychosomatic Research
In this Dutch study, 50 ME/CFS patients were followed up using ecological momentary assessment (EMA). 22 behaviours, cognitions and affects, were measured, including actigraphy, to look for factors that might perpetuate fatigue. Two perpetuating components were found in individual patients: “psychological discomfort” and “activity”. For the total patient group, however, both perpetuating components did not predict fatigue on a following time-point.
Article here Thread here
.................
Advocacy
#MEAction is looking to hire a new Executive Director. Applicants must live in the USA. To be considered submit an online application by December 15, 2020.
Details here Thread here
.................
Coming events
Czech Republic A webinar about clinical aspects of ME/CFS will be held on 25 November 2020 at the Institute of Postgraduate Medical Education in Prague. Talks in English will include Susan Levine, Betsy Keller, and Kristian Sommerfelt.
Announcement here Thread here
USA - NIAID-hosted workshop: "Workshop on Post-Acute Sequelae of COVID-19"
Registration is now open for a two day virtual workshop, December 3 & 4, 2020, from 10:00 am to 5:00 pm Eastern Time.
Register here Thread here
.................
Fundraising
USA The Solve ME/CFS Initiative (Solve M.E.) announced a $500,000 matching grant as part of their #GivingTuesday campaign. Solve M.E. board members have promised to match all gifts made before midnight on December 31st up to $500,000.
Donate here Thread here
.................
Covid-19 and ME
Open Medicine Foundation
OMF announced an anonymous, $1,000,000 grant to fund research into the relationship between COVID-19 and the possible trajectory to ME/CFS. The study will be conducted at the internationally-based Collaborative Research Centers.
Announcement here Thread here
The Guardian "Long Covid: overlap emerges with ME - including debate over treatment"
On similarities between ME and Long Covid. Interview with Dr. and patient Amy Small who raises concerns about graded exercise therapy as treatment approach. Consultant in rehabilitation medicine Dr. Manoj Sivan believes "future research will look into targeting specific rehabilitation approaches to specific subgroups".
Article here Thread here
Physios for ME "Cardio-Respiratory Rehab COVID19 Update: Goverment Update and When not to Exercise". A zoom presentation to over 400 cardiorespiratory physios about rehab of long Covid, learning lessons from the ME population. Duration 1 hour.
Video here Thread here and here
Other items of interest
BBC radio Wales "The Long Tail - My Coronavirus Recovery"
Programme here Thread here
Edinburgh News "Doctor forced to give up her job after months of terrifying covid-19 symptoms call for one-stop clinics"
Article here Thread here
FiveThirtyEight "What We Know About 'Long COVID'" with among other Dr. Mady Hornig
Podcast here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 23rd November 2020
News, articles and videos
Dialogues for a neglected illness Post Exertional Malaise
Another film from this outstanding project. This is the third film under the headline Patient's Accounts - Symptoms. It gives a good introduction to PEM through written facts and 9 patient's powerful descriptions. Duration: 22 minutes
Film here Thread here
Sweden The Swedish patient organisation RME has posted on Facebook that the popular national ME clinic at Stora Sköndal will be closing. An official announcement concerning these news is expected from Stora Sköndal during next week.
Thread here
Sweden Overview article on inflammation, chronic fatigue and pain in the Journal of the Swedish Medical Association by MDs Gunnarsson, Julin and Norén. Says general knowledge is low among doctors, that level of inflammation explains fatigue with both ME/CFS and fibromyalgia and that inflammation and PEM are characteristic for both diagnoses.
Article here Thread here
New Zealand University of Otago: Emeritus Professor Warren Tate's 2020 BHRC Lecture, entitled "Understanding the biological basis of ME/CFS and its sudden increase in public profile with COVID-19". Now available. Duration 1 hour 21 min.
Video here Thread here
Webinars Webinars from the Norwegian ME Association's annual knowledge campaign are now available on the association's YouTube channel. This year's theme was children and adolescents with ME. Four webinars are in Norwegian, one in English by Prof. Peter Rowe titled Management of paediatric ME/CFS: insights from the Johns Hopkins clinic. Prof. Rowe speaks about orthostatic intolerance, overlapping comorbid conditions, neural strain, outcomes and considerations in refractory cases. Duration: 1h 7m.
Prof. Peter Rowe's lecture here Thread here
USA Journalist Tracie White has written a book on Ron Davis and Whitney Dafoe called "The Puzzle Solver" (USA title) or "Waiting for Superman" (UK title). Publisher's Weekly calls it "a moving look at 'legendary Stanford University scientist' Davis and his fight to cure his son’s chronic fatigue syndrome." The book is available for pre-order now with a release date of Jan. 5, 2021.
Details here Thread here
HealthyControl “Request to Cochrane to withdraw two reviews on Exercise therapy and CBT for Chronic Fatigue Syndrome”
Caroline Struthers, senior research fellow at Oxford University, notified the Editor in Chief of Cochrane, Karla Soares-Weiser, about issues raised about two Cochrane reviews, namely those on exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome. On 24 November Struthers received an email that Cochrane intend to conclude the investigation into the errors in both reviews by January 2021.
Blog here Thread here
Australia EMERGE Australia ME/CFS ambassador speaks to the media.
UK Daily Mail "Australian motorsport superstar Casey Stoner reveals he's been diagnosed with a condition that is 'destroying him' - and there is no cure".
Mail article here Thread here
MElivet “Music therapy study: BMJ refuses to publish critical comments”. In this blog post, Nina Steinkopf writes how BMJ Paediatrics Open refused to publish two comments (one by her and one by forum member Michiel Tack) on a controversial paper on chronic fatigue following Epstein-Barr Virus infection.
Blog here Thread here
.................
Trial by Error by David Tuller
Update on BMJ's CBT-Music Therapy Study (h/t Steinkopf and Tack)
A summary of BMJ's evasive handling of criticism from Steinkopf, Tack and Tuller of this controversial study and its publication process. Also includes Tuller's latest received letter from BMJ's research integrity coordinator and the comment Tack has submitted to the journal.
Article here Thread here
My Letter to BMJ Paediatric Open about the CBT-Music Therapy Study
Excellent reply from Tuller to the BMJ Research Integrity Coordinator on how they're still avoiding addressing the criticism that has been raised.
Article here Thread here
.................
Biomedical research
BMC Musculoskeletal Disorders Preprint not yet peer reviewed.
"Involvement of Cervical Muscle Lesions and Autonomic Nervous System in ME/CFS" by Matsui et al.
1,226 inpatients with Fukuda criteria ME/CFS who were resistant to outpatient care were enrolled in this study over 11 years. All were given daily neck muscle treatment while in hospital to reduce stiffness. The self rated recovery rate of ME/CFS after this local therapy was 55.5%. 'Recovered' patients had greater pupil dilation decrease than non recovered, used as a measure of autonomic function. There was no control group. The authors suggest hospital rest might also have been a significant factor in recovery.
Article here Thread here
.................
Other research
Fatigue, Biomedicine, Health & Behavior
“Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS” by Tack et al.
Randomized trials on exercise therapy for CFS were not blinded and relied on patient-reported outcome measures. The authors of this paper argue that bias introduced by this study design likely influenced the results of these studies. They write that “this might explain the discrepancy between positive results reported in randomized trials and views on exercise therapy expressed by patient organizations.”
Paper here Thread here
Psychiatric aspects of general medicine
“Chronic fatigue syndrome” by Stephen E. Perry.
In this outdated review article on CFS, Stephen Perry argues that “effective treatments are available in the form of cognitive behavioural therapy and graded exercise therapy, and both treatments have been recommended by the National Institute for Health and Care Excellence.” The draft of the new NICE guideline, however, suggests that this information is outdated as it explicitly recommends against these therapies.
Article here Thread here
..................
Coming events
Solve M.E. Webinar: "Characterization of Post–exertional Malaise (PEM)"
Wednesday, Dec. 2, 1:00 - 2:00 pm Eastern Time
Barbara Stussman and co-author Dr. Brian Walitt of the NIH will discuss findings from their recent NIH study on PEM.
Register here Thread here
Solve M.E. Webinar: "COVID Long Haulers and the ME/CFS Community"
Thursday, Dec. 10, 1:00 - 2:00 pm Eastern Time (edited with date change).
Join Hunter Howard (Hormone Therapeutics CEO), Karyn Bishof (founder of the COVID-19 Long Hauler Advocacy Project), Oved Amity (Solve M.E. President & CEO) and Emily Taylor (Solve M.E. Advocacy & Community Relations Director) to discuss how COVID long haulers and the ME/CFS community can join forces for progress.
Register here Thread here
Solve M.E. Webinar: "You + ME: A Registry for the Whole ME/CFS Community"
Wednesday, Dec. 16, 1:00 - 2:00 pm Eastern Time
In this webinar, Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker and CEO Oved Amitay take a closer look at what this patient registry has to offer.
Register here Thread here
...................
Covid-19 and ME
Chronic Diseases and Translational Medicine
"Role of mitochondria, oxidative stress and the response to antioxidants in ME/CFS: a possible approach to SARS-CoV-2 ‘long-haulers’?" Warren Tate et al.
In this review article the authors review areas of ME/CFS research and suggest they provide pointers for long Covid research.
Article here Thread here
Other items of interest
biznews "Inside Covid-19: Vaccine race; SA's PANDA goes global; pandemic damages, scars minds" with Prof. Leonard Jason from 25 minutes
Podcast here Thread here
Dr. Steven Phillips & Dana Parish "Interview with Dr. Michael VanElzakker & Dr. Amy Proal". Duration 46 minutes
Interview here Thread here
CBC "Guelph researchers look for answers on lasting misery of coronavirus long-haulers"
Article here Thread here
SomersetLive "Bath woman describes 'harrowing' impact of living with long Covid"
Article here Thread here
BBC "Long Covid: How knowledge of ME could help sufferers"
Video here Thread here
Healio "Q&A: Neurological symptoms of COVID-19 remain an 'evolving story'
Article here Thread here
EMSWORLD "Long Haulers: The Continuing Casualties of COVID-19"
Article here Thread here
EatThis,NotThat! "Signs You've Already Had COVID, Says Dr. Fauci"
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Dialogues for a neglected illness Post Exertional Malaise
Another film from this outstanding project. This is the third film under the headline Patient's Accounts - Symptoms. It gives a good introduction to PEM through written facts and 9 patient's powerful descriptions. Duration: 22 minutes
Film here Thread here
Sweden The Swedish patient organisation RME has posted on Facebook that the popular national ME clinic at Stora Sköndal will be closing. An official announcement concerning these news is expected from Stora Sköndal during next week.
Thread here
Sweden Overview article on inflammation, chronic fatigue and pain in the Journal of the Swedish Medical Association by MDs Gunnarsson, Julin and Norén. Says general knowledge is low among doctors, that level of inflammation explains fatigue with both ME/CFS and fibromyalgia and that inflammation and PEM are characteristic for both diagnoses.
Article here Thread here
New Zealand University of Otago: Emeritus Professor Warren Tate's 2020 BHRC Lecture, entitled "Understanding the biological basis of ME/CFS and its sudden increase in public profile with COVID-19". Now available. Duration 1 hour 21 min.
Video here Thread here
Webinars Webinars from the Norwegian ME Association's annual knowledge campaign are now available on the association's YouTube channel. This year's theme was children and adolescents with ME. Four webinars are in Norwegian, one in English by Prof. Peter Rowe titled Management of paediatric ME/CFS: insights from the Johns Hopkins clinic. Prof. Rowe speaks about orthostatic intolerance, overlapping comorbid conditions, neural strain, outcomes and considerations in refractory cases. Duration: 1h 7m.
Prof. Peter Rowe's lecture here Thread here
USA Journalist Tracie White has written a book on Ron Davis and Whitney Dafoe called "The Puzzle Solver" (USA title) or "Waiting for Superman" (UK title). Publisher's Weekly calls it "a moving look at 'legendary Stanford University scientist' Davis and his fight to cure his son’s chronic fatigue syndrome." The book is available for pre-order now with a release date of Jan. 5, 2021.
Details here Thread here
HealthyControl “Request to Cochrane to withdraw two reviews on Exercise therapy and CBT for Chronic Fatigue Syndrome”
Caroline Struthers, senior research fellow at Oxford University, notified the Editor in Chief of Cochrane, Karla Soares-Weiser, about issues raised about two Cochrane reviews, namely those on exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome. On 24 November Struthers received an email that Cochrane intend to conclude the investigation into the errors in both reviews by January 2021.
Blog here Thread here
Australia EMERGE Australia ME/CFS ambassador speaks to the media.
UK Daily Mail "Australian motorsport superstar Casey Stoner reveals he's been diagnosed with a condition that is 'destroying him' - and there is no cure".
Mail article here Thread here
MElivet “Music therapy study: BMJ refuses to publish critical comments”. In this blog post, Nina Steinkopf writes how BMJ Paediatrics Open refused to publish two comments (one by her and one by forum member Michiel Tack) on a controversial paper on chronic fatigue following Epstein-Barr Virus infection.
Blog here Thread here
.................
Trial by Error by David Tuller
Update on BMJ's CBT-Music Therapy Study (h/t Steinkopf and Tack)
A summary of BMJ's evasive handling of criticism from Steinkopf, Tack and Tuller of this controversial study and its publication process. Also includes Tuller's latest received letter from BMJ's research integrity coordinator and the comment Tack has submitted to the journal.
Article here Thread here
My Letter to BMJ Paediatric Open about the CBT-Music Therapy Study
Excellent reply from Tuller to the BMJ Research Integrity Coordinator on how they're still avoiding addressing the criticism that has been raised.
Article here Thread here
.................
Biomedical research
BMC Musculoskeletal Disorders Preprint not yet peer reviewed.
"Involvement of Cervical Muscle Lesions and Autonomic Nervous System in ME/CFS" by Matsui et al.
1,226 inpatients with Fukuda criteria ME/CFS who were resistant to outpatient care were enrolled in this study over 11 years. All were given daily neck muscle treatment while in hospital to reduce stiffness. The self rated recovery rate of ME/CFS after this local therapy was 55.5%. 'Recovered' patients had greater pupil dilation decrease than non recovered, used as a measure of autonomic function. There was no control group. The authors suggest hospital rest might also have been a significant factor in recovery.
Article here Thread here
.................
Other research
Fatigue, Biomedicine, Health & Behavior
“Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS” by Tack et al.
Randomized trials on exercise therapy for CFS were not blinded and relied on patient-reported outcome measures. The authors of this paper argue that bias introduced by this study design likely influenced the results of these studies. They write that “this might explain the discrepancy between positive results reported in randomized trials and views on exercise therapy expressed by patient organizations.”
Paper here Thread here
Psychiatric aspects of general medicine
“Chronic fatigue syndrome” by Stephen E. Perry.
In this outdated review article on CFS, Stephen Perry argues that “effective treatments are available in the form of cognitive behavioural therapy and graded exercise therapy, and both treatments have been recommended by the National Institute for Health and Care Excellence.” The draft of the new NICE guideline, however, suggests that this information is outdated as it explicitly recommends against these therapies.
Article here Thread here
..................
Coming events
Solve M.E. Webinar: "Characterization of Post–exertional Malaise (PEM)"
Wednesday, Dec. 2, 1:00 - 2:00 pm Eastern Time
Barbara Stussman and co-author Dr. Brian Walitt of the NIH will discuss findings from their recent NIH study on PEM.
Register here Thread here
Solve M.E. Webinar: "COVID Long Haulers and the ME/CFS Community"
Thursday, Dec. 10, 1:00 - 2:00 pm Eastern Time (edited with date change).
Join Hunter Howard (Hormone Therapeutics CEO), Karyn Bishof (founder of the COVID-19 Long Hauler Advocacy Project), Oved Amity (Solve M.E. President & CEO) and Emily Taylor (Solve M.E. Advocacy & Community Relations Director) to discuss how COVID long haulers and the ME/CFS community can join forces for progress.
Register here Thread here
Solve M.E. Webinar: "You + ME: A Registry for the Whole ME/CFS Community"
Wednesday, Dec. 16, 1:00 - 2:00 pm Eastern Time
In this webinar, Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker and CEO Oved Amitay take a closer look at what this patient registry has to offer.
Register here Thread here
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Covid-19 and ME
Chronic Diseases and Translational Medicine
"Role of mitochondria, oxidative stress and the response to antioxidants in ME/CFS: a possible approach to SARS-CoV-2 ‘long-haulers’?" Warren Tate et al.
In this review article the authors review areas of ME/CFS research and suggest they provide pointers for long Covid research.
Article here Thread here
Other items of interest
biznews "Inside Covid-19: Vaccine race; SA's PANDA goes global; pandemic damages, scars minds" with Prof. Leonard Jason from 25 minutes
Podcast here Thread here
Dr. Steven Phillips & Dana Parish "Interview with Dr. Michael VanElzakker & Dr. Amy Proal". Duration 46 minutes
Interview here Thread here
CBC "Guelph researchers look for answers on lasting misery of coronavirus long-haulers"
Article here Thread here
SomersetLive "Bath woman describes 'harrowing' impact of living with long Covid"
Article here Thread here
BBC "Long Covid: How knowledge of ME could help sufferers"
Video here Thread here
Healio "Q&A: Neurological symptoms of COVID-19 remain an 'evolving story'
Article here Thread here
EMSWORLD "Long Haulers: The Continuing Casualties of COVID-19"
Article here Thread here
EatThis,NotThat! "Signs You've Already Had COVID, Says Dr. Fauci"
Article here Thread here
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