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News in Brief - July 2021
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Week beginning 5th July 2021
News, articles and advocacy
ARTE
European broadcaster ARTE has published a very good TV documentary on living with ME/CFS. Several patients with ME/CFS and one with Long Covid talk about their symptoms and show the impact on their lives, and researchers including Carmen Scheibenbogen and Bhupesh Prusty talk about their research and the need for more funding. Although the documentary is originally in German, subtitles are available in multiple languages (including English). Duration 53 minutes.
Documentary here Threads here and here
UK ME Association "Announcing The Howes Goudsmit Prize for Severe ME Research" created by a donation from Dr Ellen Goudsmit. 'The 2021 Howes Goudsmit Prize has been awarded – by unanimous decision – to Helen Baxter, Dr Nigel Speight, and Dr William Weir. They co-authored an important item of research into the recognition and management of life-threatening malnutrition in Severe ME.'
Article here Thread here
Law and Health Blog "Beyond the NICE guideline: MEComms© and the case for a public inquiry". Valerie Eliot Smith makes further recommendations on a strategic communications rethink and beginning the move towards a public inquiry.
Article here Thread here
...................
Research and commentary
Fatigue: Biomedicine, Health & Behavior
“CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome” by Anderson et al.
This paper compares the Lightning Process to other behavioral interventions for pediatric ME/CFS such as graded exercise therapy, activity management, and cognitive behavioral therapy. The authors include Esther Crawley and, designer of the Lightning Process, Phil Parker. Several S4ME forum members have criticized the paper.
Article here Thread here
Journal of Clinical Medicine
“Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective—In Light of COVID-19” by Araja et al.
This Latvian study conducted a survey among ME/CFS patients, patients with ME/CFS who might have been undiagnosed with ME/CFS and post COVID-19 patients. The latter group reported more psychological distress (anxiety) and episodic fatigue.
Article here Thread here
Journal of Health Psychology
"Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome” by Froehlich et al.
The authors conducted a survey on stigma in 499 participants with self-diagnosed ME/CFS. The perception that others view the illness as controllable and changeable indirectly predicted lower health-related quality of life for people with ME/CFS.
Article here Thread here
Trial by Error by David Tuller
"Quartet of Trials Reveals Limitations of CBT for "Medically Unexplained Symptoms""
A useful walkthrough of the main issues with the trials PACE, ACTIB, CODES and PRINCE Secondary. "All four studies engage in methodological and/or statistical gymnastics to avoid having to conclude or at least consider the possibility that CBT might not be an effective intervention after all".
Article here Thread here
...................
Covid-19 and ME
Bateman Horne Center Post-Acute Sequelae of COVID-19: Long COVID & COVID Long Haulers
"BHC's Dr. Brayden Yellman teams up with Lisa O'Brien (Founder of the Utah Long Hauler Group) and Dr. Jeannette P. Brown (Medical Director of the UUH Post-COVID Care Clinic) to deliver a presentation for medical providers addressing post-acute sequelae of COVID-19 at the University of Utah Health's Project *ECHO COVID-19 program." Duration 1 hour.
YouTube film here Thread here
Global News "Canadian with long COVID: Sick and, increasingly, worried they'll go broke"
"More than half of COVID-19 patients might be suffering from long-term symptoms more than 12 weeks after testing positive, according to a new review by the Public Health Agency of Canada. To date, 1.39 million Canadians have contracted the virus and survived, according to official statistics. But many of the country’s COVID long-haulers say they’re falling through the cracks of both private workplace insurance benefits and government income supports."
Article here Thread here
U.S. News "Meet 3 Black Women Fighting for Long COVID Recognition"
Article tells the stories of the three patient advocates Chimére Smith, Ashanti Daniel and Ashely Jackson. Two of them are Long Covid sufferers and one is suffering from ME. "Their stories draw attention to the country's long history of medical racism as well as modern day disparities in health care quality."
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
ARTE
European broadcaster ARTE has published a very good TV documentary on living with ME/CFS. Several patients with ME/CFS and one with Long Covid talk about their symptoms and show the impact on their lives, and researchers including Carmen Scheibenbogen and Bhupesh Prusty talk about their research and the need for more funding. Although the documentary is originally in German, subtitles are available in multiple languages (including English). Duration 53 minutes.
Documentary here Threads here and here
UK ME Association "Announcing The Howes Goudsmit Prize for Severe ME Research" created by a donation from Dr Ellen Goudsmit. 'The 2021 Howes Goudsmit Prize has been awarded – by unanimous decision – to Helen Baxter, Dr Nigel Speight, and Dr William Weir. They co-authored an important item of research into the recognition and management of life-threatening malnutrition in Severe ME.'
Article here Thread here
Law and Health Blog "Beyond the NICE guideline: MEComms© and the case for a public inquiry". Valerie Eliot Smith makes further recommendations on a strategic communications rethink and beginning the move towards a public inquiry.
Article here Thread here
...................
Research and commentary
Fatigue: Biomedicine, Health & Behavior
“CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome” by Anderson et al.
This paper compares the Lightning Process to other behavioral interventions for pediatric ME/CFS such as graded exercise therapy, activity management, and cognitive behavioral therapy. The authors include Esther Crawley and, designer of the Lightning Process, Phil Parker. Several S4ME forum members have criticized the paper.
Article here Thread here
Journal of Clinical Medicine
“Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective—In Light of COVID-19” by Araja et al.
This Latvian study conducted a survey among ME/CFS patients, patients with ME/CFS who might have been undiagnosed with ME/CFS and post COVID-19 patients. The latter group reported more psychological distress (anxiety) and episodic fatigue.
Article here Thread here
Journal of Health Psychology
"Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome” by Froehlich et al.
The authors conducted a survey on stigma in 499 participants with self-diagnosed ME/CFS. The perception that others view the illness as controllable and changeable indirectly predicted lower health-related quality of life for people with ME/CFS.
Article here Thread here
Trial by Error by David Tuller
"Quartet of Trials Reveals Limitations of CBT for "Medically Unexplained Symptoms""
A useful walkthrough of the main issues with the trials PACE, ACTIB, CODES and PRINCE Secondary. "All four studies engage in methodological and/or statistical gymnastics to avoid having to conclude or at least consider the possibility that CBT might not be an effective intervention after all".
Article here Thread here
...................
Covid-19 and ME
Bateman Horne Center Post-Acute Sequelae of COVID-19: Long COVID & COVID Long Haulers
"BHC's Dr. Brayden Yellman teams up with Lisa O'Brien (Founder of the Utah Long Hauler Group) and Dr. Jeannette P. Brown (Medical Director of the UUH Post-COVID Care Clinic) to deliver a presentation for medical providers addressing post-acute sequelae of COVID-19 at the University of Utah Health's Project *ECHO COVID-19 program." Duration 1 hour.
YouTube film here Thread here
Global News "Canadian with long COVID: Sick and, increasingly, worried they'll go broke"
"More than half of COVID-19 patients might be suffering from long-term symptoms more than 12 weeks after testing positive, according to a new review by the Public Health Agency of Canada. To date, 1.39 million Canadians have contracted the virus and survived, according to official statistics. But many of the country’s COVID long-haulers say they’re falling through the cracks of both private workplace insurance benefits and government income supports."
Article here Thread here
U.S. News "Meet 3 Black Women Fighting for Long COVID Recognition"
Article tells the stories of the three patient advocates Chimére Smith, Ashanti Daniel and Ashely Jackson. Two of them are Long Covid sufferers and one is suffering from ME. "Their stories draw attention to the country's long history of medical racism as well as modern day disparities in health care quality."
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 12th July 2021
News, articles and advocacy
Royal College of Physicians "Doctors believe in ME" by Dr. Nina Muirhead
An excellent blog post about the recent increase of interest in ME/CFS by doctors and some significant developments within the field.
Article here Thread here
Doctors with ME highlight the above article by one of their Directors, Dr Muirhead, and publish a response. 'In reply, Doctors with M.E. Honorary Fellow, Professor Derek Pheby, further details the background of stigma and denial and concurs that the future for ME/CFS is looking bright.'
Article here Thread here
USA Solve M.E. is asking people to contact their senators to support a funding increase for ME/CFS. They have set up an automated tool for this purpose.
Link here Thread here
USA Solve M.E. posted a reminder about making comments on the CDC ME/CFS Interim Report (published in May). There are concerns that this report could lead to harmful or ineffective treatment guidelines. Comments must be submitted to the CDC by August 16, 2021.
Report here Submit comments here Thread here
UK - ME/CFS and Long Covid Group for Black Communities
From an #MEAction article: "Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the aim of improving our wellbeing."
Website here #MEAction article here Thread here
Trial by Error by David Tuller Some Lightning Process Updates
The article covers three topics;
Aftermaths of the recent decision to remove the ethical approval of a Lightning Process study in Norway.
A website called Voices of Recovery by unknown founders who have become official stakeholders to NICE's new clinical ME/CFS guidelines.
A critical look on a recent paper in the journal Fatigue: Biomedicine, Health & Behavior on similarities between CBT and Lightning Process which was co-authored by the method's inventor.
Article here Thread here
Norway An opinion piece from Sigmund Olafsen in the academic news site Khrono where he supports the recent decision about the withdrawal of ethical approval of a planned study on the alternative method Lightning Process as treatment for ME.
Opinion piece here Thread here
Health Rising "We are Failing People with Very Severe ME/CFS"
Amber Ella shares her experiences from having advocated for severe and extremely vulnerable ME/CFS patients in a health care system that lacks knowledge and routines for this patient group. She identifies five actions that should be taken to ease this work and offers a list of useful resources from the medical literature.
Article here Thread here (members only)
A Girl In One Room Jessica Taylor-Bearman's book A Girl In One Room (A Girl Behind Dark Glasses Book 2) is #1 Best Seller in the category Teen & Young Adult Diseases, Illnesses & Injuries Fiction eBooks at Amazon.
Twitter announcement here Thread here
Sweden Ann-Marie Högberg tells the magazine HejaOlika that her adult daughter who suffers from severe ME is left without no help or care from the Swedish Social Insurance Agency or the health care system.
Article here Thread here
#MEAction has announced their Severe ME Artists Project. This project is an opportunity for those with severe ME to showcase their artwork. There will be multiple ways to participate.
Link here Thread here
.................
Biomedical Research
Journal of Clinical Endocrinology and Metabolism
"Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome" by De Bellis, Montoya et al.
30 women with ME/CFS and 25 matched controls were investigated. 56% of those with ME/CFS had anti-pituitary, and 33% anti-hypothalamic antibodies. None were found in the controls. The 13 patients with higher antibody titres 'showed ACTH/cortisol and GH peak/ IGF1 levels significantly lower and more severe forms of ME/CFS.'
Paper here Thread here
Journal of Clinical Investigation
"Pathomechanisms and possible interventions in ME/CFS" by Fluge et al.
From the abstract: 'Herein, we suggest a framework model for the initiation and maintenance of ME/CFS consisting of three principal steps: (a) an initial aberrant immune response; (b) an effector system for symptom generation and maintenance; and (c) compensatory adaptations.' The article also discusses 'possible therapeutic opportunities'
Paper here Thread here
Frontiers in Immunology
"Potential therapeutic benefit of Low Dose Naltrexone in [ME/CFS]: Role of Transient Receptor Potential Melastatin 3 ion channels" by Cabanas et al
In vitro tests on NK cells from 9 ME/CFS patients already taking LDN and 9 matched healthy controls 'support the hypothesis that LDN may have potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment involving TRPM3 and opioid receptors in NK cells'.
Paper here Thread here
Journal of Clinical Medicine
"Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with ME/CFS" by Baklund et al.
Compared results of routine tests between 149 ME/CFS patients from a tertiary clinic in Norway and 264 healthy blood donor controls (not closely matched for age, gender or comorbidities). The authors conclude: 'Our findings, particularly that of a decreased CK and creatinine, may indicate greater metabolic abnormalities among patients and is worthy of future studies. This is also true of results that may indicate a possible low-grade inflammation in ME/CFS patients.'
Paper here Thread here
Journal of Translational Medicine
"The effect of IL-2 stimulation and treatment of TRPM3 on channel co-localisation with PIP2 and NK cell function in ME/CFS patients" by Staines et al.
In vitro tests on NK cells from 15 ME/CFS patients and 15 matched healthy controls showed some between group differences relating to NK cell cytotoxicity.
Paper here Thread here
...................
Other research
Fatigue: Biomedicine, Health & Behavior
"Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey" by Morehouse et al.
Researchers, from Saginaw Valley State University conducted an online questionnaire on online ME/CFS support groups. 76 patients provided full responses. Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS.
Article here Thread here
Journal of Ethics
“What to do when symptoms are difficult to see or measure”
The July issue of AMA Journal of Ethics investigates the ethical, clinical and social stakes of failing to view patients as authorities about their bodies and illness experiences. It also offers CME credit.
Article here Thread here
Food and Nutrition Research
"A preliminary investigation of nutritional intake and supplement use in Australians with ME/CFS and the implications on health-related quality of life" by Weigel et al.
24 self selected people with ME/CFS filled in on-line questionnnaires and the results compared with population data. There were some differences in diet and higher supplement use in the patient population. ' No consistent trends between nutrition and supplement use with patients’ HRQoL (health related quality of life) could be identified.'
Paper here Thread here
.................
Fundraising
UK ME Association Big Giving to raise funds for biomedical research is asking for pledges of matching funds for their appeal.
Article here Thread here
UK Invest in ME Research is looking for runners to join their team for a London half marathon to raise awareness of ME, and donations in support of their research funds.
Article here Thread here
.................
Covid-19 and ME
Center for solutions for ME/CFS ME/CFS Research: State of the Art, State of the Science
Dr. Anthony Komaroff provides a comprehensible summary of a recent paper by him and Dr. W. Ian Lipkin about how insight from research into ME may help unravel the pathogenesis of postacute COVID-19 syndrome.
Article here Thread here
Frontiers in Cellular Neuroscience
"Endothelial Senescence and Chronic Fatigue Syndrome, a COVID-19 Based Hypothesis" by Sfera et al.
'Here, we hypothesize further that post-viral sequelae, including [ME/CFS], are promoted by the gut microbes or toxin translocation from the gastrointestinal tract into other tissues, including the brain. This model is supported by the SARS-CoV-2 interaction with host proteins and bacterial lipopolysaccharide. Conversely, targeting microbial translocation and cellular senescence may ameliorate the symptoms of this disabling illness.'
Article here Thread here
Gez Medinger has a YouTube channel with an expert interview series about Long Covid. In the latest two episodes he and Dr. Asada Khan discuss pacing and graded exercise with Prof. Todd Davenport, Sue Pemberton, Darren Brown and Ruth Ainley.
Part 1: The Why, When and How of Pacing l Long Covid's Most Important Lesson here
Part 2: Pacing vs Graded Exercise Therapy l The Academic Battle - in Reality here
Thread here
Solve M.E. has posted a webinar on YouTube, the first in a 3-part series, called "Long Covid: What Do We Know So Far?" The discussion is moderated by Sadie Whittaker and features Dr. Nisreen Alwan and Dr. Natalie Lambert.
Video here Thread here
Other items of interest
Daily Mail Can long Covid be cured by a monthly dose of the vaccine?
Article here Thread here
Nature Communications Medicine The teachings of Long COVID by Nisreen A. Alwan
Article here Thread here
Financial Times Long Covid defies understanding as sufferers despair: Doctors fear 'tens of thousands' of people could be afflicted by multiple symptoms
Article here (paywalled) Thread here
Healthcare IT news Meet the informaticist trying to solve the mystery of long COVID
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
Royal College of Physicians "Doctors believe in ME" by Dr. Nina Muirhead
An excellent blog post about the recent increase of interest in ME/CFS by doctors and some significant developments within the field.
Article here Thread here
Doctors with ME highlight the above article by one of their Directors, Dr Muirhead, and publish a response. 'In reply, Doctors with M.E. Honorary Fellow, Professor Derek Pheby, further details the background of stigma and denial and concurs that the future for ME/CFS is looking bright.'
Article here Thread here
USA Solve M.E. is asking people to contact their senators to support a funding increase for ME/CFS. They have set up an automated tool for this purpose.
Link here Thread here
USA Solve M.E. posted a reminder about making comments on the CDC ME/CFS Interim Report (published in May). There are concerns that this report could lead to harmful or ineffective treatment guidelines. Comments must be submitted to the CDC by August 16, 2021.
Report here Submit comments here Thread here
UK - ME/CFS and Long Covid Group for Black Communities
From an #MEAction article: "Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the aim of improving our wellbeing."
Website here #MEAction article here Thread here
Trial by Error by David Tuller Some Lightning Process Updates
The article covers three topics;
Aftermaths of the recent decision to remove the ethical approval of a Lightning Process study in Norway.
A website called Voices of Recovery by unknown founders who have become official stakeholders to NICE's new clinical ME/CFS guidelines.
A critical look on a recent paper in the journal Fatigue: Biomedicine, Health & Behavior on similarities between CBT and Lightning Process which was co-authored by the method's inventor.
Article here Thread here
Norway An opinion piece from Sigmund Olafsen in the academic news site Khrono where he supports the recent decision about the withdrawal of ethical approval of a planned study on the alternative method Lightning Process as treatment for ME.
Opinion piece here Thread here
Health Rising "We are Failing People with Very Severe ME/CFS"
Amber Ella shares her experiences from having advocated for severe and extremely vulnerable ME/CFS patients in a health care system that lacks knowledge and routines for this patient group. She identifies five actions that should be taken to ease this work and offers a list of useful resources from the medical literature.
Article here Thread here (members only)
A Girl In One Room Jessica Taylor-Bearman's book A Girl In One Room (A Girl Behind Dark Glasses Book 2) is #1 Best Seller in the category Teen & Young Adult Diseases, Illnesses & Injuries Fiction eBooks at Amazon.
Twitter announcement here Thread here
Sweden Ann-Marie Högberg tells the magazine HejaOlika that her adult daughter who suffers from severe ME is left without no help or care from the Swedish Social Insurance Agency or the health care system.
Article here Thread here
#MEAction has announced their Severe ME Artists Project. This project is an opportunity for those with severe ME to showcase their artwork. There will be multiple ways to participate.
Link here Thread here
.................
Biomedical Research
Journal of Clinical Endocrinology and Metabolism
"Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome" by De Bellis, Montoya et al.
30 women with ME/CFS and 25 matched controls were investigated. 56% of those with ME/CFS had anti-pituitary, and 33% anti-hypothalamic antibodies. None were found in the controls. The 13 patients with higher antibody titres 'showed ACTH/cortisol and GH peak/ IGF1 levels significantly lower and more severe forms of ME/CFS.'
Paper here Thread here
Journal of Clinical Investigation
"Pathomechanisms and possible interventions in ME/CFS" by Fluge et al.
From the abstract: 'Herein, we suggest a framework model for the initiation and maintenance of ME/CFS consisting of three principal steps: (a) an initial aberrant immune response; (b) an effector system for symptom generation and maintenance; and (c) compensatory adaptations.' The article also discusses 'possible therapeutic opportunities'
Paper here Thread here
Frontiers in Immunology
"Potential therapeutic benefit of Low Dose Naltrexone in [ME/CFS]: Role of Transient Receptor Potential Melastatin 3 ion channels" by Cabanas et al
In vitro tests on NK cells from 9 ME/CFS patients already taking LDN and 9 matched healthy controls 'support the hypothesis that LDN may have potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment involving TRPM3 and opioid receptors in NK cells'.
Paper here Thread here
Journal of Clinical Medicine
"Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with ME/CFS" by Baklund et al.
Compared results of routine tests between 149 ME/CFS patients from a tertiary clinic in Norway and 264 healthy blood donor controls (not closely matched for age, gender or comorbidities). The authors conclude: 'Our findings, particularly that of a decreased CK and creatinine, may indicate greater metabolic abnormalities among patients and is worthy of future studies. This is also true of results that may indicate a possible low-grade inflammation in ME/CFS patients.'
Paper here Thread here
Journal of Translational Medicine
"The effect of IL-2 stimulation and treatment of TRPM3 on channel co-localisation with PIP2 and NK cell function in ME/CFS patients" by Staines et al.
In vitro tests on NK cells from 15 ME/CFS patients and 15 matched healthy controls showed some between group differences relating to NK cell cytotoxicity.
Paper here Thread here
...................
Other research
Fatigue: Biomedicine, Health & Behavior
"Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey" by Morehouse et al.
Researchers, from Saginaw Valley State University conducted an online questionnaire on online ME/CFS support groups. 76 patients provided full responses. Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS.
Article here Thread here
Journal of Ethics
“What to do when symptoms are difficult to see or measure”
The July issue of AMA Journal of Ethics investigates the ethical, clinical and social stakes of failing to view patients as authorities about their bodies and illness experiences. It also offers CME credit.
Article here Thread here
Food and Nutrition Research
"A preliminary investigation of nutritional intake and supplement use in Australians with ME/CFS and the implications on health-related quality of life" by Weigel et al.
24 self selected people with ME/CFS filled in on-line questionnnaires and the results compared with population data. There were some differences in diet and higher supplement use in the patient population. ' No consistent trends between nutrition and supplement use with patients’ HRQoL (health related quality of life) could be identified.'
Paper here Thread here
.................
Fundraising
UK ME Association Big Giving to raise funds for biomedical research is asking for pledges of matching funds for their appeal.
Article here Thread here
UK Invest in ME Research is looking for runners to join their team for a London half marathon to raise awareness of ME, and donations in support of their research funds.
Article here Thread here
.................
Covid-19 and ME
Center for solutions for ME/CFS ME/CFS Research: State of the Art, State of the Science
Dr. Anthony Komaroff provides a comprehensible summary of a recent paper by him and Dr. W. Ian Lipkin about how insight from research into ME may help unravel the pathogenesis of postacute COVID-19 syndrome.
Article here Thread here
Frontiers in Cellular Neuroscience
"Endothelial Senescence and Chronic Fatigue Syndrome, a COVID-19 Based Hypothesis" by Sfera et al.
'Here, we hypothesize further that post-viral sequelae, including [ME/CFS], are promoted by the gut microbes or toxin translocation from the gastrointestinal tract into other tissues, including the brain. This model is supported by the SARS-CoV-2 interaction with host proteins and bacterial lipopolysaccharide. Conversely, targeting microbial translocation and cellular senescence may ameliorate the symptoms of this disabling illness.'
Article here Thread here
Gez Medinger has a YouTube channel with an expert interview series about Long Covid. In the latest two episodes he and Dr. Asada Khan discuss pacing and graded exercise with Prof. Todd Davenport, Sue Pemberton, Darren Brown and Ruth Ainley.
Part 1: The Why, When and How of Pacing l Long Covid's Most Important Lesson here
Part 2: Pacing vs Graded Exercise Therapy l The Academic Battle - in Reality here
Thread here
Solve M.E. has posted a webinar on YouTube, the first in a 3-part series, called "Long Covid: What Do We Know So Far?" The discussion is moderated by Sadie Whittaker and features Dr. Nisreen Alwan and Dr. Natalie Lambert.
Video here Thread here
Other items of interest
Daily Mail Can long Covid be cured by a monthly dose of the vaccine?
Article here Thread here
Nature Communications Medicine The teachings of Long COVID by Nisreen A. Alwan
Article here Thread here
Financial Times Long Covid defies understanding as sufferers despair: Doctors fear 'tens of thousands' of people could be afflicted by multiple symptoms
Article here (paywalled) Thread here
Healthcare IT news Meet the informaticist trying to solve the mystery of long COVID
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 19th July 2021
News and media
George Monbiot In this interview George Monbiot touches upon many topics, including a few minutes about ME, Long Covid, the BPS lobby, the SMC and more. "I think it's one of the greatest medical scandals of the last century, the way that this massive illness or series of illnesses of post viral syndrome have been denied and downplayed". Duration: 54 minutes. The segment about ME begins at 34.15.
Interview here Thread here
A Life Hidden "What Freedom Day Means for Those Who Aren't Free"
A blog post by Naomi Whittingham on the occasion of pandemic-restrictions having been lifted in the UK. "Today I join hands with all those too vulnerable to return to normality, but whose spirits are strong with courage. We will come through this."
Article here Thread here
Comic "But...... you did it before by Mahli Quinn"
A good YouTube video explaining ME by the use of comic. The film is made by Mahli Quinn and posted by the ME Association. Duration: 6 minutes.
Video here Thread here
...............
Trial by Error by David Tuller
"CBT Model of Medically Unexplained Symptoms, Explained; CBT Trial for q-Fever Fatigue"
A critical look at an article from UK (2007) outlining the rationale behind CBT as treatment approach for MUS, and a clinical trial from the Netherlands (2017) on CBT as treatment for Q-fever Fatigue Syndrome. ".. if scientists refuse to self-correct no matter how poor their results, then what's the point?"
Article here Thread here
"Tack and I Write to Psych Medicine; Struthers Writes to Medical Research Council"
David Tuller and Michiel Tack have written a letter to the journal Psychological Medicine which published a paper with null results on CBT as treatment for persistent physical symptoms, but with an abstract claiming otherwise. Caroline Struthers follows up a previous statement from Prof. Fiona Watt, Executive Chair of the UK Medical Research Council explaining why Prof. Watt's claim of there being sound evidence behind CBT/GET as treatment for ME/CFS is wrong.
Article here Thread here
..................
Surveys
UK - Equality and Human Rights Commission Inquiry into how older and disabled adults and unpaid carers can challenge local council decisions about social care and support in England and Wales. A survey to hear from those affected by the issues closes on 15th September.
Details here Survey here Thread here
UK - WAMES (Wales Association of CFS and ME support) "Do GP's in Wales use NICE guidance?" 'Your responses will be included in a report and used in discussions on how the 2021 NICE guidance can help improve healthcare for people with ME in Wales.'
Article with link to survey here Thread here
...............
Coming Events
2021 IACFS/ME Virtual Conference A special registration option has been added for people who want to attend ONLY the patient/public lecture series on August 19. The discount price is $50 for IACFS/ME members and $65 for non-members (must register before August 12).
Registration here Thread here
..................
Biomedical research commentary and conference talks
Healthcare
Commentary: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied" by Anthony Komaroff
This short commentary highlights the problem of doctors assuming that if routine blood tests are normal, there is nothing wrong. 'In the past 20 years, however, new research technologies have uncovered a series of biological abnormalities in people with ME/CFS. Unfortunately, many physicians remain unaware of this, and some tell patients that “there is nothing wrong” with them. This skepticism delegitimizes, and thereby multiplies, the patients’ suffering.'
Article here Thread here
Saugstad, Jelstad Two lectures from a recent digital ME conference in Stryn, Norway are now available on YouTube with English subtitles. The lectures are by professor emeritus Ola Didrik Saugstad and Jørgen Jelstad. The lectures lasts for 1 hour each and provide an informative and general view of current status on ME and research.
Saugstad's lecture here Jelstad's lecture here Thread here
................
Covid-19 and ME
Trial by Error by David Tuller
"Medical Societies and new Komaroff-Lipkin Paper Highlight Long COVID and ME/CFS Links"
A summary of three recent and good articles on parallels between Long COVID and ME. "A lot of doctors read these and other professional newsletters. If any were inclined to dismiss either Long COVID or ME/CFS as psychogenic or arising from anxiety and excess focusing on symptoms, perhaps these posts will encourage them to take both diseases more seriously."
Article here Thread here
Critical Care Explorations "Cardiopulmonary Exercise Testing in Critically Ill Coronavirus Disease 2019 Survivors: Evidence of a Sustained Exercise Intolerance and Hypermetabolism"
This small study found that exercise intolerance '... did not result from residual pulmonary or cardiac dysfunction but rather from a metabolic disorder characterized by a sustained hypermetabolism and an impaired oxygen utilization.'
Paper here Thread here
Healio Long COVID: A 'mysterious' syndrome with 'no clear pattern' of symptoms
Article here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
News and media
George Monbiot In this interview George Monbiot touches upon many topics, including a few minutes about ME, Long Covid, the BPS lobby, the SMC and more. "I think it's one of the greatest medical scandals of the last century, the way that this massive illness or series of illnesses of post viral syndrome have been denied and downplayed". Duration: 54 minutes. The segment about ME begins at 34.15.
Interview here Thread here
A Life Hidden "What Freedom Day Means for Those Who Aren't Free"
A blog post by Naomi Whittingham on the occasion of pandemic-restrictions having been lifted in the UK. "Today I join hands with all those too vulnerable to return to normality, but whose spirits are strong with courage. We will come through this."
Article here Thread here
Comic "But...... you did it before by Mahli Quinn"
A good YouTube video explaining ME by the use of comic. The film is made by Mahli Quinn and posted by the ME Association. Duration: 6 minutes.
Video here Thread here
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Trial by Error by David Tuller
"CBT Model of Medically Unexplained Symptoms, Explained; CBT Trial for q-Fever Fatigue"
A critical look at an article from UK (2007) outlining the rationale behind CBT as treatment approach for MUS, and a clinical trial from the Netherlands (2017) on CBT as treatment for Q-fever Fatigue Syndrome. ".. if scientists refuse to self-correct no matter how poor their results, then what's the point?"
Article here Thread here
"Tack and I Write to Psych Medicine; Struthers Writes to Medical Research Council"
David Tuller and Michiel Tack have written a letter to the journal Psychological Medicine which published a paper with null results on CBT as treatment for persistent physical symptoms, but with an abstract claiming otherwise. Caroline Struthers follows up a previous statement from Prof. Fiona Watt, Executive Chair of the UK Medical Research Council explaining why Prof. Watt's claim of there being sound evidence behind CBT/GET as treatment for ME/CFS is wrong.
Article here Thread here
..................
Surveys
UK - Equality and Human Rights Commission Inquiry into how older and disabled adults and unpaid carers can challenge local council decisions about social care and support in England and Wales. A survey to hear from those affected by the issues closes on 15th September.
Details here Survey here Thread here
UK - WAMES (Wales Association of CFS and ME support) "Do GP's in Wales use NICE guidance?" 'Your responses will be included in a report and used in discussions on how the 2021 NICE guidance can help improve healthcare for people with ME in Wales.'
Article with link to survey here Thread here
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Coming Events
2021 IACFS/ME Virtual Conference A special registration option has been added for people who want to attend ONLY the patient/public lecture series on August 19. The discount price is $50 for IACFS/ME members and $65 for non-members (must register before August 12).
Registration here Thread here
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Biomedical research commentary and conference talks
Healthcare
Commentary: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied" by Anthony Komaroff
This short commentary highlights the problem of doctors assuming that if routine blood tests are normal, there is nothing wrong. 'In the past 20 years, however, new research technologies have uncovered a series of biological abnormalities in people with ME/CFS. Unfortunately, many physicians remain unaware of this, and some tell patients that “there is nothing wrong” with them. This skepticism delegitimizes, and thereby multiplies, the patients’ suffering.'
Article here Thread here
Saugstad, Jelstad Two lectures from a recent digital ME conference in Stryn, Norway are now available on YouTube with English subtitles. The lectures are by professor emeritus Ola Didrik Saugstad and Jørgen Jelstad. The lectures lasts for 1 hour each and provide an informative and general view of current status on ME and research.
Saugstad's lecture here Jelstad's lecture here Thread here
................
Covid-19 and ME
Trial by Error by David Tuller
"Medical Societies and new Komaroff-Lipkin Paper Highlight Long COVID and ME/CFS Links"
A summary of three recent and good articles on parallels between Long COVID and ME. "A lot of doctors read these and other professional newsletters. If any were inclined to dismiss either Long COVID or ME/CFS as psychogenic or arising from anxiety and excess focusing on symptoms, perhaps these posts will encourage them to take both diseases more seriously."
Article here Thread here
Critical Care Explorations "Cardiopulmonary Exercise Testing in Critically Ill Coronavirus Disease 2019 Survivors: Evidence of a Sustained Exercise Intolerance and Hypermetabolism"
This small study found that exercise intolerance '... did not result from residual pulmonary or cardiac dysfunction but rather from a metabolic disorder characterized by a sustained hypermetabolism and an impaired oxygen utilization.'
Paper here Thread here
Healio Long COVID: A 'mysterious' syndrome with 'no clear pattern' of symptoms
Article here Thread here
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S4ME social media: Facebook, Twitter and You Tube
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Week beginning 26th July 2021
News, articles and advocacy
European ME Coalition (EMEC)
In response to the ME/CFS petition and resolution, the European Commission plans to conduct a scoping study. This could eventually lead to the permanent inclusion of a special category of under-researched illnesses such as ME/CFS in future work programs of Horizon Europe. EMEC sent a letter to Director General Jean-Eric Paquet to highlight the lack of realization thus far and the need to make progress.
Article here Thread here
In the meantime, the first Horizon Europe calls have been published. EMEC highlights three calls that might provide funding opportunities for ME/CFS researchers. Importantly, research in the US, UK, and Norway are also eligible to receive funding under these Horizon Europe calls.
Article here Thread here
UK - Forward ME has a new website which includes sections on its members, news and minutes of meetings. 'Forward-ME’s overall objective is to ensure the needs of people with ME/CFS are better met by promoting and facilitating unity across the ME field and forging greater collaboration with stakeholders.'
Website here Thread here
UK CMRC (CFS/ME Research Collaborative) Dr David Strain is the new chair replacing Sir Stephen Holgate. Action for ME is no longer providing the secretary.
Post here
UK - Action for ME is the subject of a misconduct complaint to the Charity Commission over its endorsement of the PACE trial when it began in 2005. This is reported in the Sunday Telegraph newspaper, where Sonya Chowdhury, Chief Executive of AfME is quoted as saying they have not seen the details of the complaint. In a statement on the AfME website she says, "We categorically do not endorse its results, as clearly indicated on our website with our commentary on CBT and GET."
Action for ME statement here Thread here
Healthycontrol
Caroline Struthers, Senior Equator Research Fellow at Oxford University wrote to Matt Westmore, Chief Executive of Health Research Authority (HRA), about the HRA’s report on the PACE Trial. She copied in Carol Monaghan from the Science and Technology Select Committee. The letter has been made public on her blog, healthycontrol.
Article here Thread here
Trial by Error by David Tuller
"Neurology Journal Fixes False Claim in MUS Paper–But Fails to Publish a Correction Notice". Dr Tuller has succeeded in getting several journals to correct an overstatement of the prevalence of MUS in papers they published. In this case the correction has been made, but there is no accompanying corrigendum to draw attention to the correction, as us usually done.
Article here Thread here
......................
Biomedical research and news
Fatigue, Biomedicine, Health and Behavior
"A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spontaneous intracranial hypotension; caused by cranial venous outflow obstruction" by Higgins et al.
The authors speculate that ME may be caused by changes in intracranial pressure, with increased pressure caused by acquired, intermittent, compromised cranial venous outflow, alternating with reduced pressure due to cerebrospinal fluid leaks.
Article here Thread here
Journal of Clinical Medicine
"Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease" by Morizot et al.
50 patients with this rare, ill-understood blood condition, all female smokers, had symptoms overlapping with SEID (ME/CFS) on questionnaires.
Paper here Thread here
Nutrients
"Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related Quality of Life in Individuals with ME/CFS: A Prospective, Randomized, Double-Blind, Placebo-Controlled Trial" by
Castro-Marrero et al.
207 patients over 12 weeks took either the supplement or matched placebo in this double blind trial. No between group differences were found on any of the questionnaires, showing the treatment is ineffective. However, in the abstract the authors have chosen to cherry pick and highlight some minor within group fluctuations in the treatment group, using this to claim some evidence of clinical benefits justifying further research.
Paper here Thread here
ME Research UK has announced funding for a study: 'Cell-type specificity, molecular scope and epigenetic basis for mitochondrial and cellular dysfunction in ME/CFS', Principal investigator, Dr Sarah Annesley, La Trobe University, Australia.
Article here Thread here
USA Solve M.E. has announced a study to see whether peptide levels from saliva samples can be used to diagnose ME/CFS.
Article here Thread here
......................
Covid-19 and ME
British Medical Journal
Rapid responses to the recent BMJ article 'CFS and Long Covid, moving beyond the controversy' have been published. These include the excellent letter to the editor: 'Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS'
by Dr Charles Shepherd. 'People with ME/CFS who have not been listened to by health professionals and told that their symptoms are “all in the mind” deserve an apology. This attitude has meant that biomedical research into the underlying cause of ME/CFS has not taken place at the speed it should.'
Article with rapid responses here Letter here Thread here
BMJ
“Long covid—mechanisms, risk factors, and management” by Crook et al.
The authors provide an overview of research on long covid and also briefly discuss ME/CFS. In a rapid response, Mark Vink and Alexandra Vink-Niese explain that their and other reviews found that graded exercise therapy and cognitive behavioral therapy are not effective for ME/CFS patients.
Article here Letter here Thread here
The Body With or Without HIV, Folks Living With Long COVID and ME/CFS Are Desperate for a Breakthrough
Features Abdul-Aliy Muhammad who lives with HIV and has Long Covid. Former The Body editor JD Davids who lives with ME/CFS and long COVID says that just as with federal funding for HIV, advocates will have to monitor the use of long-COVID funds. Researcher Avindra Nath believes genetic factors may trigger a prolonged immune activation in Long Covid and that something similar might be going on with ME/CFS. He thinks antivirals and immunotherapy can be applicable to both ME and Long Covid.
Article here Thread here
Harvard Law - Bill of Health How Long COVID Is Forcing a Reckoning with the Neglect of Post-Infection Chronic Illnesses
A great article by Colleen Campbell about the neglect of post-viral illnesses and the consequences this has had for patients, particularly for female Black patients. Tells about the advocacy work of Wilhelmina Jenkins and Rivka Solomon as well as about the challenges Long COVID patients are inheriting, and how they are responding to them.
Article here Thread here
Stanford Medicine Stanford Medicine opens clinic for patients struggling with long COVID
Article by Tracie White about a long Covid clinic at Stanford and how the clinic is "taking cues from what is known about other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
Other items of interest
The Scotsman "Long Covid has shed new light on ME (chronic fatigue syndrome), once disparagingly dismissed as 'yuppie flu' - Professor Eleanor Riley"
Article here Thread here
The Conversation "Why governments will have to consider the costs of long COVID when easing pandemic restrictions"
Article here Thread here
Psychology Today "The Link Between Long Covid and Chronic Fatigue"
Article here Thread here
Tagesspiegel The chairman for the German ME/CFS Association, Daniel Hattesohl, has written an opinion piece about why Long Covid should not come as any surprise.
Article here (German) Thread here
Science "The road to addressing Long Covid" by Nisreen A. Alwan
Article here Thread here
SBS News "'Wise to be thinking now': Calls for Australia to consider the burden of long COVID"
Article here Thread here
ABC Science Friction The long COVID doctors (Part 2 of 2). Radio programme with 3 doctors as guests sharing their experiences with long COVID. Duration: 32 minutes.
Programme here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
European ME Coalition (EMEC)
In response to the ME/CFS petition and resolution, the European Commission plans to conduct a scoping study. This could eventually lead to the permanent inclusion of a special category of under-researched illnesses such as ME/CFS in future work programs of Horizon Europe. EMEC sent a letter to Director General Jean-Eric Paquet to highlight the lack of realization thus far and the need to make progress.
Article here Thread here
In the meantime, the first Horizon Europe calls have been published. EMEC highlights three calls that might provide funding opportunities for ME/CFS researchers. Importantly, research in the US, UK, and Norway are also eligible to receive funding under these Horizon Europe calls.
Article here Thread here
UK - Forward ME has a new website which includes sections on its members, news and minutes of meetings. 'Forward-ME’s overall objective is to ensure the needs of people with ME/CFS are better met by promoting and facilitating unity across the ME field and forging greater collaboration with stakeholders.'
Website here Thread here
UK CMRC (CFS/ME Research Collaborative) Dr David Strain is the new chair replacing Sir Stephen Holgate. Action for ME is no longer providing the secretary.
Post here
UK - Action for ME is the subject of a misconduct complaint to the Charity Commission over its endorsement of the PACE trial when it began in 2005. This is reported in the Sunday Telegraph newspaper, where Sonya Chowdhury, Chief Executive of AfME is quoted as saying they have not seen the details of the complaint. In a statement on the AfME website she says, "We categorically do not endorse its results, as clearly indicated on our website with our commentary on CBT and GET."
Action for ME statement here Thread here
Healthycontrol
Caroline Struthers, Senior Equator Research Fellow at Oxford University wrote to Matt Westmore, Chief Executive of Health Research Authority (HRA), about the HRA’s report on the PACE Trial. She copied in Carol Monaghan from the Science and Technology Select Committee. The letter has been made public on her blog, healthycontrol.
Article here Thread here
Trial by Error by David Tuller
"Neurology Journal Fixes False Claim in MUS Paper–But Fails to Publish a Correction Notice". Dr Tuller has succeeded in getting several journals to correct an overstatement of the prevalence of MUS in papers they published. In this case the correction has been made, but there is no accompanying corrigendum to draw attention to the correction, as us usually done.
Article here Thread here
......................
Biomedical research and news
Fatigue, Biomedicine, Health and Behavior
"A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spontaneous intracranial hypotension; caused by cranial venous outflow obstruction" by Higgins et al.
The authors speculate that ME may be caused by changes in intracranial pressure, with increased pressure caused by acquired, intermittent, compromised cranial venous outflow, alternating with reduced pressure due to cerebrospinal fluid leaks.
Article here Thread here
Journal of Clinical Medicine
"Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease" by Morizot et al.
50 patients with this rare, ill-understood blood condition, all female smokers, had symptoms overlapping with SEID (ME/CFS) on questionnaires.
Paper here Thread here
Nutrients
"Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related Quality of Life in Individuals with ME/CFS: A Prospective, Randomized, Double-Blind, Placebo-Controlled Trial" by
Castro-Marrero et al.
207 patients over 12 weeks took either the supplement or matched placebo in this double blind trial. No between group differences were found on any of the questionnaires, showing the treatment is ineffective. However, in the abstract the authors have chosen to cherry pick and highlight some minor within group fluctuations in the treatment group, using this to claim some evidence of clinical benefits justifying further research.
Paper here Thread here
ME Research UK has announced funding for a study: 'Cell-type specificity, molecular scope and epigenetic basis for mitochondrial and cellular dysfunction in ME/CFS', Principal investigator, Dr Sarah Annesley, La Trobe University, Australia.
Article here Thread here
USA Solve M.E. has announced a study to see whether peptide levels from saliva samples can be used to diagnose ME/CFS.
Article here Thread here
......................
Covid-19 and ME
British Medical Journal
Rapid responses to the recent BMJ article 'CFS and Long Covid, moving beyond the controversy' have been published. These include the excellent letter to the editor: 'Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS'
by Dr Charles Shepherd. 'People with ME/CFS who have not been listened to by health professionals and told that their symptoms are “all in the mind” deserve an apology. This attitude has meant that biomedical research into the underlying cause of ME/CFS has not taken place at the speed it should.'
Article with rapid responses here Letter here Thread here
BMJ
“Long covid—mechanisms, risk factors, and management” by Crook et al.
The authors provide an overview of research on long covid and also briefly discuss ME/CFS. In a rapid response, Mark Vink and Alexandra Vink-Niese explain that their and other reviews found that graded exercise therapy and cognitive behavioral therapy are not effective for ME/CFS patients.
Article here Letter here Thread here
The Body With or Without HIV, Folks Living With Long COVID and ME/CFS Are Desperate for a Breakthrough
Features Abdul-Aliy Muhammad who lives with HIV and has Long Covid. Former The Body editor JD Davids who lives with ME/CFS and long COVID says that just as with federal funding for HIV, advocates will have to monitor the use of long-COVID funds. Researcher Avindra Nath believes genetic factors may trigger a prolonged immune activation in Long Covid and that something similar might be going on with ME/CFS. He thinks antivirals and immunotherapy can be applicable to both ME and Long Covid.
Article here Thread here
Harvard Law - Bill of Health How Long COVID Is Forcing a Reckoning with the Neglect of Post-Infection Chronic Illnesses
A great article by Colleen Campbell about the neglect of post-viral illnesses and the consequences this has had for patients, particularly for female Black patients. Tells about the advocacy work of Wilhelmina Jenkins and Rivka Solomon as well as about the challenges Long COVID patients are inheriting, and how they are responding to them.
Article here Thread here
Stanford Medicine Stanford Medicine opens clinic for patients struggling with long COVID
Article by Tracie White about a long Covid clinic at Stanford and how the clinic is "taking cues from what is known about other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome".
Article here Thread here
Other items of interest
The Scotsman "Long Covid has shed new light on ME (chronic fatigue syndrome), once disparagingly dismissed as 'yuppie flu' - Professor Eleanor Riley"
Article here Thread here
The Conversation "Why governments will have to consider the costs of long COVID when easing pandemic restrictions"
Article here Thread here
Psychology Today "The Link Between Long Covid and Chronic Fatigue"
Article here Thread here
Tagesspiegel The chairman for the German ME/CFS Association, Daniel Hattesohl, has written an opinion piece about why Long Covid should not come as any surprise.
Article here (German) Thread here
Science "The road to addressing Long Covid" by Nisreen A. Alwan
Article here Thread here
SBS News "'Wise to be thinking now': Calls for Australia to consider the burden of long COVID"
Article here Thread here
ABC Science Friction The long COVID doctors (Part 2 of 2). Radio programme with 3 doctors as guests sharing their experiences with long COVID. Duration: 32 minutes.
Programme here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
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