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News in Brief - February 2021
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Week beginning 1st February 2021
News and media
USA Eleven different ME/CFS organizations co-sign a letter to congress recommending where to direct research funding provided by the federal COVID-19 economic relief package.
Letter here Thread here
Emerge Australia has launched an online service, with facilitated community groups for patients, carers and others, and an ME/CFS community forum.
Details here Thread here
Norway Opinion piece by Nina E. Steinkopf in the Journal for the Norwegian Psychologist Association about NICE's guideline draft where GET/CBT have been removed as treatment approaches. She appeals to Norwegian health authorities to keep up with the new developments.
Article here Thread here
Australia - ABC radio "Is society getting better at understanding people living with invisible illness?" features excellent input from Heidi and Simone from Emerge Australia, and unhelpful comments from a doctor.
Podcast here (duration 51 minutes) Thread here
...................
Books
Marcus Sedgwick, prizewinning author of adult and young adult fiction, has had ME/CFS for 7 years and has written a book about his experiences, 'All in Your Head', and is creating a podcast series.
Article here Thread here
Josie George Guardian article "‘My personal lockdown has been much longer’: on chronic illness, before and after Covid" by Josie George who has ME. She describes her life with ME and how lockdown has affected it very little. She has a forthcoming book: A Still Life: A Memoir by Josie George is published by Bloomsbury on 18 February.
Article here Thread here
Tracie White and Ron Davis Zoom event Friday February 12th.
Conversation with the author of the book 'The Puzzle Solver', Tracie White with Ron Davis and Janet Dafoe, facilitated by Rivka Solomon.
Details here Thread here
.....................
Research news
Cochrane
"Notification of a serious error in reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome: resubmission"
Caroline Struthers has sent another letter to Cochrane, highlighting that the review on exercise therapy and the one on cognitive-behavioural therapy for ME/CFS contain serious errors that might lead to patients being harmed. Struthers argues that these reviews should be withdrawn.
Article and Thread here
NIH Further reporting on the news (reported last week) that NIH has launched two online digital resources for ME researchers to access data from multi-omic studies (mapMECFS) and biospecimens as well as clinical information on patients (searchMECFS). In the column "Director's Messages" NIH states: "We encourage investigators from a variety of disciplines and interests to use these tools to pursue new research avenues. Our sincere hope is that these ME/CFS tools will also benefit the larger research community. It will take a large-scale effort – from all of us – to help find critical answers to this devastating disease."
Press release here
Director's messages here
Coverage by GEN (Genetic Engineering & Biotechnology News) here
Thread here
.....................
Biomedical research
Pharmacological Research
"ME/CFS: Where Will the Drugs Come From?" by Toogood et al.
The authors 'review the current understanding, diagnosis and treatment of ME/CFS and summarize past clinical studies aimed at identifying effective therapies.' Treatment targets include autoimmunity, immune dysregulation, eg N-K cell function, and mitochondrial dysfunction. They conclude with the need for more investment in research.
Article here ME Association article by Charles Shepherd here Thread here
Clinical Neurophysiology
"Chronic fatigue syndrome: Abnormally fast muscle fiber conduction in the membranes of motor units at a low-level static force load" by Klaver-Krol et al.
Females with CFS (n=25), with FM (n=22), and healthy controls (n=21) underwent surface electromyography of the biceps. In the CFS patients, muscle conduction increased abnormally with force. The healthy controls it increased slightly and in FM not at all. The authors conclude 'Our results suggest disturbed membrane function in CFS patients, in their motor units involved in low force generation. Central neural deregulation may contribute to these findings.'
Paper here Thread here
Fatigue, Biomedicine, Health and Behavior
"Antibody-dependent cell-mediated cytotoxicity (ADCC) in familial ME/CFS" by Sung et al.
The authors explain that antibody-dependent cell-mediated cytotoxicity (ADCC) by NK lymphocytes helps control viral infections. Testing 5 families with more than one person with CFS (Fukuda), and healthy unrelated controls showed some differences.
'CFS patients and their family members had fewer CD16Apositive NK cells, required more antibody, and had ADCC that was lower than the unrelated controls. CFS family members were predominantly genetically CD16A F/F s for the variant with low affinity for antibodies.'
They conclude: 'Low ADCC may be a risk factor for familial CFS. Furthermore, characterization of familial CFS represents an opportunity to identify pathogenic mechanisms of CFS.'
Article here Thread here
MedRxiv preprint
"A Molecular network approach reveals shared cellular and molecular signatures between chronic fatigue syndrome and other fatiguing illnesses" by Comella et al.
15 people with CFS and 15 controls.
From the abstract: 'The immune cell type specific molecular signatures of CFS we identified, overlapped molecular signatures from other fatiguing illnesses [Covid, Lyme], demonstrating a common molecular etiology. Further, after constructing a probabilistic causal model of the CFS gene expression data, we identified master regulator genes modulating network states associated with CFS, suggesting potential therapeutic targets for CFS.'
Article here Thread here
Journal of Translational Medicine
"Off label use of Aripiprazole shows promise as a treatment for ME/CFS: a retrospective study of 101 patients treated with a low dose of Aripiprazole" by Bonilla et al.
On the basis of some evidence of neuroinflammation in ME/CFS, the doctors at the Stanford University ME/CFS clinic speculated that dopamine-modulating drugs like aripiprazole may lead to clinical improvement in fatigue and cognitive symptoms in ME/CFS. Patients at the clinic were prescribed varied low doses of the drug off label. This article takes a retrospective look at their clinical records. Some patients improved on subjective symptom severity questionnaires, some worsened or had to stop due to side effects. The authors conclude this is sufficient indication that a clinical trial is warranted.
Article here Thread here
Brain and Behavior
"Open‐label study with the monoamine stabilizer (‐)‐OSU6162 in ME/CFS" by Haghighi et al.
This Swedish 12 week trial was set up to investigate the safety and tolerability of the drug with 33 patients. 28 completed the trial. The abstract concludes: '(‐)‐OSU6162 is well tolerated in ME/CFS patients and shows promise as a novel treatment to mitigate fatigue and improve mood and health‐related quality of life in ME/CFS. Obviously, the present results need to be confirmed in future placebo‐controlled double‐blind trials.'
Paper here Thread here
.......................
Other research
BMJ Open
“Exploratory study into the relationship between the symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM) using a quasiexperimental design” by Mckay et al.
In this survey, the authors handed out fatigue and other symptom questionnaires to a group of ME/CFS and a group of fibromyalgia patients and concluded that there were few differences between the two groups.
Article here Thread here
Healthcare
“Experiences of Living with Severe CFS/ME” by Strassheim et al.
In this study, the authors conducted interviews with 5 individuals living with CFS/ME in its most severe form.
Article here Thread here
Journal of Mental Health
“Concern for Covid-19 cough, fever and impact on mental health. What about risk of Somatic Symptom Disorder?” by Willis & Chalder
In this editorial, the authors speculate that the COVID-19 and pandemic-related distress may lead to an increase of cases with Somatic Symptom Disorder.
Article here Thread here
Frontiers in Medicine
“Numeric Rating Scales Show Prolonged Post-exertional Symptoms After Orthostatic Testing of Adults With ME/CFS” van Campen et al.
In this study, the Dutch authors measured pain, fatigue and concentration difficulties for a period of up to 7 days after head-up tilt testing. While the symptom score increased slightly in the ME/CFS group (with or without fibromyalgia) it remained flat around zero in healthy controls.
Article here Thread here
.......................
Covid-19 and ME
Zebra Psych "I'd rather die than be sick for a year"
Wise reflection's from Louise Kenward on society's estranged views on illnesses and its "othering" of disabled people.
Article here Thread here
Podcast Long Covid Physio: "Long Covid Rehab Research"
Interesting conversation between Long Covid Physio Darren Brown and postdoc fellow Simon Décary. Décarey tells of how listening to patients and by familiarising himself with ME and PEM, took his research project on Long Covid and rehabilitation in a completely new direction with #StopRestPace as principle. Duration: 1 H 3 min.
Thread with episode as YouTube video here
TNR (The New Republic) "The Forever Disease: How Covid-19 Became a Chronic Condition"
A thorough and informative long read on Long Covid, ME, and the importance of further knowledge and research into post virus illness. Article is also available as audio version.
Article here Thread here
Blog "Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid"
Valerie Eliot Smith, in an excellent article, reviews Professor Paul Garner's series of articles in BMJ Opinion (see last week's news), and discusses her correspondence with him. 'Professor Garner’s post of 25 January 2021 demonstrates an extraordinary lack of empathy for a patient community with which he had previously identified so strongly. As to what caused such a profound and damaging volte-face, one can only speculate.'
Article here Thread here
Other items of interest
RNZ "Covid long haulers fighting to be heard"
Article here Thread here
The New York Times "Long-Haul Covid and the Chronic Illness Debate"
Article here Thread here
Dagens Medicin "Vården av långtidssjuka i covid måste säkerställas" Appeal by Swedish politician Catarina Wahlgren on securing care for patients with Long Covid and with ME.
Article here Thread here
ZDF "Immer erschöpft - Das Fatigue Syndrome" 6 minute TV news segment from Germany on Covid-19 and ME.
Video here Thread here
NIH - The Schor Line "Working together to understand long-term effects of Covid-19"
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
News and media
USA Eleven different ME/CFS organizations co-sign a letter to congress recommending where to direct research funding provided by the federal COVID-19 economic relief package.
Letter here Thread here
Emerge Australia has launched an online service, with facilitated community groups for patients, carers and others, and an ME/CFS community forum.
Details here Thread here
Norway Opinion piece by Nina E. Steinkopf in the Journal for the Norwegian Psychologist Association about NICE's guideline draft where GET/CBT have been removed as treatment approaches. She appeals to Norwegian health authorities to keep up with the new developments.
Article here Thread here
Australia - ABC radio "Is society getting better at understanding people living with invisible illness?" features excellent input from Heidi and Simone from Emerge Australia, and unhelpful comments from a doctor.
Podcast here (duration 51 minutes) Thread here
...................
Books
Marcus Sedgwick, prizewinning author of adult and young adult fiction, has had ME/CFS for 7 years and has written a book about his experiences, 'All in Your Head', and is creating a podcast series.
Article here Thread here
Josie George Guardian article "‘My personal lockdown has been much longer’: on chronic illness, before and after Covid" by Josie George who has ME. She describes her life with ME and how lockdown has affected it very little. She has a forthcoming book: A Still Life: A Memoir by Josie George is published by Bloomsbury on 18 February.
Article here Thread here
Tracie White and Ron Davis Zoom event Friday February 12th.
Conversation with the author of the book 'The Puzzle Solver', Tracie White with Ron Davis and Janet Dafoe, facilitated by Rivka Solomon.
Details here Thread here
.....................
Research news
Cochrane
"Notification of a serious error in reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome: resubmission"
Caroline Struthers has sent another letter to Cochrane, highlighting that the review on exercise therapy and the one on cognitive-behavioural therapy for ME/CFS contain serious errors that might lead to patients being harmed. Struthers argues that these reviews should be withdrawn.
Article and Thread here
NIH Further reporting on the news (reported last week) that NIH has launched two online digital resources for ME researchers to access data from multi-omic studies (mapMECFS) and biospecimens as well as clinical information on patients (searchMECFS). In the column "Director's Messages" NIH states: "We encourage investigators from a variety of disciplines and interests to use these tools to pursue new research avenues. Our sincere hope is that these ME/CFS tools will also benefit the larger research community. It will take a large-scale effort – from all of us – to help find critical answers to this devastating disease."
Press release here
Director's messages here
Coverage by GEN (Genetic Engineering & Biotechnology News) here
Thread here
.....................
Biomedical research
Pharmacological Research
"ME/CFS: Where Will the Drugs Come From?" by Toogood et al.
The authors 'review the current understanding, diagnosis and treatment of ME/CFS and summarize past clinical studies aimed at identifying effective therapies.' Treatment targets include autoimmunity, immune dysregulation, eg N-K cell function, and mitochondrial dysfunction. They conclude with the need for more investment in research.
Article here ME Association article by Charles Shepherd here Thread here
Clinical Neurophysiology
"Chronic fatigue syndrome: Abnormally fast muscle fiber conduction in the membranes of motor units at a low-level static force load" by Klaver-Krol et al.
Females with CFS (n=25), with FM (n=22), and healthy controls (n=21) underwent surface electromyography of the biceps. In the CFS patients, muscle conduction increased abnormally with force. The healthy controls it increased slightly and in FM not at all. The authors conclude 'Our results suggest disturbed membrane function in CFS patients, in their motor units involved in low force generation. Central neural deregulation may contribute to these findings.'
Paper here Thread here
Fatigue, Biomedicine, Health and Behavior
"Antibody-dependent cell-mediated cytotoxicity (ADCC) in familial ME/CFS" by Sung et al.
The authors explain that antibody-dependent cell-mediated cytotoxicity (ADCC) by NK lymphocytes helps control viral infections. Testing 5 families with more than one person with CFS (Fukuda), and healthy unrelated controls showed some differences.
'CFS patients and their family members had fewer CD16Apositive NK cells, required more antibody, and had ADCC that was lower than the unrelated controls. CFS family members were predominantly genetically CD16A F/F s for the variant with low affinity for antibodies.'
They conclude: 'Low ADCC may be a risk factor for familial CFS. Furthermore, characterization of familial CFS represents an opportunity to identify pathogenic mechanisms of CFS.'
Article here Thread here
MedRxiv preprint
"A Molecular network approach reveals shared cellular and molecular signatures between chronic fatigue syndrome and other fatiguing illnesses" by Comella et al.
15 people with CFS and 15 controls.
From the abstract: 'The immune cell type specific molecular signatures of CFS we identified, overlapped molecular signatures from other fatiguing illnesses [Covid, Lyme], demonstrating a common molecular etiology. Further, after constructing a probabilistic causal model of the CFS gene expression data, we identified master regulator genes modulating network states associated with CFS, suggesting potential therapeutic targets for CFS.'
Article here Thread here
Journal of Translational Medicine
"Off label use of Aripiprazole shows promise as a treatment for ME/CFS: a retrospective study of 101 patients treated with a low dose of Aripiprazole" by Bonilla et al.
On the basis of some evidence of neuroinflammation in ME/CFS, the doctors at the Stanford University ME/CFS clinic speculated that dopamine-modulating drugs like aripiprazole may lead to clinical improvement in fatigue and cognitive symptoms in ME/CFS. Patients at the clinic were prescribed varied low doses of the drug off label. This article takes a retrospective look at their clinical records. Some patients improved on subjective symptom severity questionnaires, some worsened or had to stop due to side effects. The authors conclude this is sufficient indication that a clinical trial is warranted.
Article here Thread here
Brain and Behavior
"Open‐label study with the monoamine stabilizer (‐)‐OSU6162 in ME/CFS" by Haghighi et al.
This Swedish 12 week trial was set up to investigate the safety and tolerability of the drug with 33 patients. 28 completed the trial. The abstract concludes: '(‐)‐OSU6162 is well tolerated in ME/CFS patients and shows promise as a novel treatment to mitigate fatigue and improve mood and health‐related quality of life in ME/CFS. Obviously, the present results need to be confirmed in future placebo‐controlled double‐blind trials.'
Paper here Thread here
.......................
Other research
BMJ Open
“Exploratory study into the relationship between the symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM) using a quasiexperimental design” by Mckay et al.
In this survey, the authors handed out fatigue and other symptom questionnaires to a group of ME/CFS and a group of fibromyalgia patients and concluded that there were few differences between the two groups.
Article here Thread here
Healthcare
“Experiences of Living with Severe CFS/ME” by Strassheim et al.
In this study, the authors conducted interviews with 5 individuals living with CFS/ME in its most severe form.
Article here Thread here
Journal of Mental Health
“Concern for Covid-19 cough, fever and impact on mental health. What about risk of Somatic Symptom Disorder?” by Willis & Chalder
In this editorial, the authors speculate that the COVID-19 and pandemic-related distress may lead to an increase of cases with Somatic Symptom Disorder.
Article here Thread here
Frontiers in Medicine
“Numeric Rating Scales Show Prolonged Post-exertional Symptoms After Orthostatic Testing of Adults With ME/CFS” van Campen et al.
In this study, the Dutch authors measured pain, fatigue and concentration difficulties for a period of up to 7 days after head-up tilt testing. While the symptom score increased slightly in the ME/CFS group (with or without fibromyalgia) it remained flat around zero in healthy controls.
Article here Thread here
.......................
Covid-19 and ME
Zebra Psych "I'd rather die than be sick for a year"
Wise reflection's from Louise Kenward on society's estranged views on illnesses and its "othering" of disabled people.
Article here Thread here
Podcast Long Covid Physio: "Long Covid Rehab Research"
Interesting conversation between Long Covid Physio Darren Brown and postdoc fellow Simon Décary. Décarey tells of how listening to patients and by familiarising himself with ME and PEM, took his research project on Long Covid and rehabilitation in a completely new direction with #StopRestPace as principle. Duration: 1 H 3 min.
Thread with episode as YouTube video here
TNR (The New Republic) "The Forever Disease: How Covid-19 Became a Chronic Condition"
A thorough and informative long read on Long Covid, ME, and the importance of further knowledge and research into post virus illness. Article is also available as audio version.
Article here Thread here
Blog "Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid"
Valerie Eliot Smith, in an excellent article, reviews Professor Paul Garner's series of articles in BMJ Opinion (see last week's news), and discusses her correspondence with him. 'Professor Garner’s post of 25 January 2021 demonstrates an extraordinary lack of empathy for a patient community with which he had previously identified so strongly. As to what caused such a profound and damaging volte-face, one can only speculate.'
Article here Thread here
Other items of interest
RNZ "Covid long haulers fighting to be heard"
Article here Thread here
The New York Times "Long-Haul Covid and the Chronic Illness Debate"
Article here Thread here
Dagens Medicin "Vården av långtidssjuka i covid måste säkerställas" Appeal by Swedish politician Catarina Wahlgren on securing care for patients with Long Covid and with ME.
Article here Thread here
ZDF "Immer erschöpft - Das Fatigue Syndrome" 6 minute TV news segment from Germany on Covid-19 and ME.
Video here Thread here
NIH - The Schor Line "Working together to understand long-term effects of Covid-19"
Article here Thread here
.......................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 8th February 2021
News, videos
#MEAction Scotland "Latest report shows people with ME have been failed by Scottish Government"
'The Scottish Government’s report published at the end of January, “ME-CFS healthcare needs assessment: Briefing”, shows repeated failures over the last 20 years to provide support for people with ME.'
Article here Government report here Thread here
Sweden The regional board of Västerbotten has decided that a specialist clinic for ME/CFS will open in Umeå. It's unknown when this can become a reality, but if it comes through, it will be the first ME/CFS clinic North of Stockholm.
Thread with more information here
ME Ireland "Online Talk and Q&A with Dr. Hanne Thürmer"
A recorded talk by cardiologist dr. Hanne Thürmer from Notodden community hospital, Norway. She gives an introduction to ME and talks about her clinical approach. Duration: 1H 4min.
Thread with link to talk here
....................
Biomedical research
Molecular Psychiatry
“Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis” by Safadi et al.
The authors combine results on gut dysbiosis for different illnesses, including bipolar disorder, depression, schizophrenia and ME/CFS. Results were similar in these illnesses suggesting “that gut dysbiosis may underlie symptoms of sickness behavior across traditional diagnostic boundaries.”
Article here Thread here
Chest Journal
"Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS" by Joseph, Systrom et al.
160 patients with ME/CFS were selected from a larger trial of upright invasive iCPETs performed to investigate exertional intolerance. Significant differences were found compared with controls. The authors conclude: 'These results identify two types of peripheral neurovascular dysregulation that are biologically plausible contributors to ME/CFS exertional intolerance–depressed Qc from impaired venous return, and impaired peripheral oxygen extraction.'
Skin biopsies found 36% had small fibre neuropathy: 'neuropathic dysregulation causing microvascular dilation may limit exertion by shunting oxygenated blood from capillary beds and reducing cardiac return.'
Paper here Thread here
Advances in Respiratory Medicine
"Case report: Young and exhausted" by Oleksak et al.
A 13 year old investigated for ME was found to have symptoms caused by disordered breathing, not ME. The paper is of interest because this Slovakian team is using the 2 day CPET (cardio pulmonary exercise test) as a diagnostic test for PEM, and hence for ME/CFS.
Paper here Thread here
Nutrients
"Diagnostic and Pharmacological Potency of Creatine in Post-Viral Fatigue Syndrome" by Ostojic.
The author, who holds a patent for a creatine supplement, hypothesises that it may be relevant to PVFS, citing several research papers.
Paper here Thread here
....................
Other research
European Child & Adolescent Psychiatry
"Mental health screening in adolescents with CFS/ME" by Loades et al.
The authors determined threshold scores for mental health problems in pediatric ME/CFS on two commonly used screening questionnaires. While the Revised Children’s Anxiety and Depression Scale (RCADS) was able to gets sufficient sensitivity and specificity in selecting patients with anxiety and/or depression, this was not the case for the commonly used Hospital Anxiety and Depression Scale (HADS).
Article here Thread here
Medrxiv
"Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study" by Freitag et al.
In this preprint, the German research team of Carmen Scheibenbogen and colleagues reports that 19 of the 42 patients with persistent complaints following COVID-19 infection met the Canadian Consensus Criteria for ME/CFS. The authors caution, however, that “recruitment bias may have contributed to the severity of symptoms, thus this cohort is probably not representative for all COVID-19 patients with persistent fatigue.”
Article here Thread here (edited to add missing links)
....................
Advocacy action
UK Petition "Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine". ME organisations are asking the government body that determines vaccine priority to classify ME/CFS with other long term conditions in group 6.
Petition here Thread here
UK ME Association is asking for short items on good and bad experiences of NHS and social care for people with ME in the UK in the last 2 years, to be used in their ME Awareness week publicity following the publication of the new NICE guideline. Deadline 29th March.
Details here Thread here
....................
Coming Events
CDC: The 2nd Interagency ME/CFS Working Group Meeting, February 25-26, 2021 The working group will address workforce development and education of ME/CFS healthcare providers as well as share updates about current activities to address prolonged illness following COVID-19, also referred to as “long COVID.”
Meetings will take place on two days: Thursday, February 25, from 1:00-5:00 PM Eastern Time and Friday, February 26, from 1:00-3:00 PM Eastern Time. Attendees can register for both days but they must register for each day separately.
Register here Thread here
....................
Covid-19 and ME
Physios for ME report on their virtual meeting with the group Long Covid Physio, a global peer support and advocacy group for physiotherapists and support workers living with Long Covid. 'For many it was a steep learning curve to realise that the typical rehabilitative approach of graded exercise was not going to help them, and could result in episodic disability.' The long covid group is taking the lead in education and advocacy for long Covid, and the two groups will continue to cooperate.
Article here Thread here
#MEAction UK have written an excellent letter to the UK All Party Parliamentary Groups for ME/CFS and for Long Covid to encourage them to collaborate on 3 areas: GET, PEM and the NICE guidelines; misleading advice from the online resource Your NHS Covid Recovery; and children and young people with ME or long Covid.
Thread with letter here
Trial by Error by David Tuller "New Biopsychosocial Paper on Long-Covid and Somatic Symptom Disorder"
Tuller takes a critical look at a recent editorial in the Journal of Mental Health on Long Covid and somatic symptom disorder written by Chalder et al.
Article here Thread here
Newsweek "Covid-19 Could Increase Dementia, Other Brain Disorders for Decades to Come"
Includes interview with dr. Avindra Nath (NIH) who says among other: - Research that starts with observations at early stages of the disease could be "an excellent opportunity" to increase understanding of chronic fatigue syndrome and other brain diseases.
Article here Thread here
BMA "Long COVID - we've been here before"
Splendid article in the British Medical Association about Long Covid and ME with interviews with Nina Muirhead, David Strain, Charles Shepherd and Amy Small. "This almost flurry of research into long COVID contrasts with the experience of many with ME/CFS, who often have felt ignored or misunderstood by the medical profession. But for some, the interest in long COVID is an opportunity to learn more about the longer-term consequences of viral infections – which could, in time, also benefit people with ME/CFS."
Article here Thread here
WHO (World Health Organization) A webinar called "Expanding Our Understanding of the Post COVID-19 Condition" was held on Feb. 9th. No recording yet, but patient researcher Hannah Davis live-tweeted during the presentation. There is also a short summary on the BMJ website.
Twitter thread here BMJ article here Thread here
Other items of interest
The Japan Times "Japanese doctors warn of long-lasting COVID-19 aftereffects among young people"
Article here Thread here
JOSPT "Physical Therapists Living With Long COVID, Part 2: When "Keep Pushing" Isn't the Answer"
Article here Thread here
Connacht Tribune "ME lessons for Long Covid"
Thread with article here
.....................
S4ME social media: Facebook, Twitter and You Tube
Edited for a typo and a couple of missed links.
News, videos
#MEAction Scotland "Latest report shows people with ME have been failed by Scottish Government"
'The Scottish Government’s report published at the end of January, “ME-CFS healthcare needs assessment: Briefing”, shows repeated failures over the last 20 years to provide support for people with ME.'
Article here Government report here Thread here
Sweden The regional board of Västerbotten has decided that a specialist clinic for ME/CFS will open in Umeå. It's unknown when this can become a reality, but if it comes through, it will be the first ME/CFS clinic North of Stockholm.
Thread with more information here
ME Ireland "Online Talk and Q&A with Dr. Hanne Thürmer"
A recorded talk by cardiologist dr. Hanne Thürmer from Notodden community hospital, Norway. She gives an introduction to ME and talks about her clinical approach. Duration: 1H 4min.
Thread with link to talk here
....................
Biomedical research
Molecular Psychiatry
“Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis” by Safadi et al.
The authors combine results on gut dysbiosis for different illnesses, including bipolar disorder, depression, schizophrenia and ME/CFS. Results were similar in these illnesses suggesting “that gut dysbiosis may underlie symptoms of sickness behavior across traditional diagnostic boundaries.”
Article here Thread here
Chest Journal
"Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS" by Joseph, Systrom et al.
160 patients with ME/CFS were selected from a larger trial of upright invasive iCPETs performed to investigate exertional intolerance. Significant differences were found compared with controls. The authors conclude: 'These results identify two types of peripheral neurovascular dysregulation that are biologically plausible contributors to ME/CFS exertional intolerance–depressed Qc from impaired venous return, and impaired peripheral oxygen extraction.'
Skin biopsies found 36% had small fibre neuropathy: 'neuropathic dysregulation causing microvascular dilation may limit exertion by shunting oxygenated blood from capillary beds and reducing cardiac return.'
Paper here Thread here
Advances in Respiratory Medicine
"Case report: Young and exhausted" by Oleksak et al.
A 13 year old investigated for ME was found to have symptoms caused by disordered breathing, not ME. The paper is of interest because this Slovakian team is using the 2 day CPET (cardio pulmonary exercise test) as a diagnostic test for PEM, and hence for ME/CFS.
Paper here Thread here
Nutrients
"Diagnostic and Pharmacological Potency of Creatine in Post-Viral Fatigue Syndrome" by Ostojic.
The author, who holds a patent for a creatine supplement, hypothesises that it may be relevant to PVFS, citing several research papers.
Paper here Thread here
....................
Other research
European Child & Adolescent Psychiatry
"Mental health screening in adolescents with CFS/ME" by Loades et al.
The authors determined threshold scores for mental health problems in pediatric ME/CFS on two commonly used screening questionnaires. While the Revised Children’s Anxiety and Depression Scale (RCADS) was able to gets sufficient sensitivity and specificity in selecting patients with anxiety and/or depression, this was not the case for the commonly used Hospital Anxiety and Depression Scale (HADS).
Article here Thread here
Medrxiv
"Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study" by Freitag et al.
In this preprint, the German research team of Carmen Scheibenbogen and colleagues reports that 19 of the 42 patients with persistent complaints following COVID-19 infection met the Canadian Consensus Criteria for ME/CFS. The authors caution, however, that “recruitment bias may have contributed to the severity of symptoms, thus this cohort is probably not representative for all COVID-19 patients with persistent fatigue.”
Article here Thread here (edited to add missing links)
....................
Advocacy action
UK Petition "Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine". ME organisations are asking the government body that determines vaccine priority to classify ME/CFS with other long term conditions in group 6.
Petition here Thread here
UK ME Association is asking for short items on good and bad experiences of NHS and social care for people with ME in the UK in the last 2 years, to be used in their ME Awareness week publicity following the publication of the new NICE guideline. Deadline 29th March.
Details here Thread here
....................
Coming Events
CDC: The 2nd Interagency ME/CFS Working Group Meeting, February 25-26, 2021 The working group will address workforce development and education of ME/CFS healthcare providers as well as share updates about current activities to address prolonged illness following COVID-19, also referred to as “long COVID.”
Meetings will take place on two days: Thursday, February 25, from 1:00-5:00 PM Eastern Time and Friday, February 26, from 1:00-3:00 PM Eastern Time. Attendees can register for both days but they must register for each day separately.
Register here Thread here
....................
Covid-19 and ME
Physios for ME report on their virtual meeting with the group Long Covid Physio, a global peer support and advocacy group for physiotherapists and support workers living with Long Covid. 'For many it was a steep learning curve to realise that the typical rehabilitative approach of graded exercise was not going to help them, and could result in episodic disability.' The long covid group is taking the lead in education and advocacy for long Covid, and the two groups will continue to cooperate.
Article here Thread here
#MEAction UK have written an excellent letter to the UK All Party Parliamentary Groups for ME/CFS and for Long Covid to encourage them to collaborate on 3 areas: GET, PEM and the NICE guidelines; misleading advice from the online resource Your NHS Covid Recovery; and children and young people with ME or long Covid.
Thread with letter here
Trial by Error by David Tuller "New Biopsychosocial Paper on Long-Covid and Somatic Symptom Disorder"
Tuller takes a critical look at a recent editorial in the Journal of Mental Health on Long Covid and somatic symptom disorder written by Chalder et al.
Article here Thread here
Newsweek "Covid-19 Could Increase Dementia, Other Brain Disorders for Decades to Come"
Includes interview with dr. Avindra Nath (NIH) who says among other: - Research that starts with observations at early stages of the disease could be "an excellent opportunity" to increase understanding of chronic fatigue syndrome and other brain diseases.
Article here Thread here
BMA "Long COVID - we've been here before"
Splendid article in the British Medical Association about Long Covid and ME with interviews with Nina Muirhead, David Strain, Charles Shepherd and Amy Small. "This almost flurry of research into long COVID contrasts with the experience of many with ME/CFS, who often have felt ignored or misunderstood by the medical profession. But for some, the interest in long COVID is an opportunity to learn more about the longer-term consequences of viral infections – which could, in time, also benefit people with ME/CFS."
Article here Thread here
WHO (World Health Organization) A webinar called "Expanding Our Understanding of the Post COVID-19 Condition" was held on Feb. 9th. No recording yet, but patient researcher Hannah Davis live-tweeted during the presentation. There is also a short summary on the BMJ website.
Twitter thread here BMJ article here Thread here
Other items of interest
The Japan Times "Japanese doctors warn of long-lasting COVID-19 aftereffects among young people"
Article here Thread here
JOSPT "Physical Therapists Living With Long COVID, Part 2: When "Keep Pushing" Isn't the Answer"
Article here Thread here
Connacht Tribune "ME lessons for Long Covid"
Thread with article here
.....................
S4ME social media: Facebook, Twitter and You Tube
Edited for a typo and a couple of missed links.
Last edited:
Week beginning 15th February 2021
News
Norway Opinion piece by civil engineer and ME patient Benedikte Monrad-Krohn for a news site about research. She urges to listen and believe patients, and not to generalise from anecdotes to a whole patient population, but rather focus on finding the right treatment for the right patients.
Article here Thread here
France The High Authority for Health (Haute Autorité de la Santé) has published a guideline on long covid. It doesn’t refer to ME/CFS and only mentions that it may take a while to recover from viral infections. An additional document about functional somatic symptoms (troubles somatiques fonctionnels) explicitly states that, although the cause of these symptoms is not well understood, they are often maintained by psychological factors and social circumstances.
Documents here Thread here
ME/CFS Skeptic "From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome." Michiel Tack and Evelien Van Den Brink have written a new blog post where they analyze the controversial views of Canadian historian Edward Shorter on ME/CFS. They write: “When someone writes extremely dismissively about ME/CFS, it is common to find a mention of Edward Shorter in their references (if they have any).”
Article here Thread here
ABC (Nightlife), Australia The Puzzle Solver by Tracie White
Radio interview with author Tracie White about her book "The Puzzle Solver". She talks about Whitney Dafoe and his severe ME, about his father Ron Davis and his effort to solve the disease and also about some of the history of the disease. Duration: 24 min.
Interview here Thread here
...............
Trial by Error by David Tuller
Happy Tenth Anniversary, PACE Trial!
It's ten years since the scandalous PACE trial was published. But this also became the starting point of David Tuller's enormous journalistic and academic effort for improving research into ME. "As I recognized the huge resistance being mounted to stave off change, I gradually become obsessed with a core feature of this entire saga: How was it possible that an entire academic and medical establishment could accept as legitimate a study in which participants could be “recovered” on key measures at baseline?"
Article here Thread here
Trial By Error: Hughes-Tuller Comment on Wessely-Chalder CBT Study Rejected by Journal, Posted Here
Dr David Tuller and Professor Brian Hughes have issued a detailed analysis of the data from Kings College on cognitive behaviour therapy for patients with chronic fatigue and CFS. Their manuscript was rejected by the Journal of the Royal Society of Medicine and published on Virology Blog. Tuller & Hughes argue that data from Kings College suffer from various methodological weakness including sampling ambiguity, survivor bias, missing data, and lack of a control group, and that a formal published correction is indicated.
Article here Thread here
...............
Research news
Germany Bhupesh Prusty, via Twitter: 'To bridge the knowledge gap between LongCovid and ME/CFS, we have acquired 2 grants worth almost 1 million Euro. Two new projects employing world class, state-of-the-art single cell RNA & protein biology will soon kick start in our group.' One grant was from ME Research UK.
Thread with link here
USA "Ohio State researchers isolate biomarker to test for chronic fatigue syndrome". Article on the university website about the paper published in January "ME/CFS: The Human Herpesviruses Are Back!"
Article here Thread here
USA "Chronic Illness: The Case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis" The research team of Leonard Jason has written a chapter on ME/CFS in the Handbook of Research Methods in Health Psychology. One section describes existing case definitions for ME and CFS, highlighting their limitations and the resulting methodological complications for researchers and clinicians.
Article here Thread here
..................
Biomedical research
International Journal of Molecular Sciences
"Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts" by Missailidis, Fisher et al.
This research group in Melbourne, Australia have already reported on research using lymphoblast cell lines from people with ME/CFS and healthy controls to investigate energy production. In this paper they report on further tests on these cells using 'whole-cell transcriptomics, proteomics and energy stress signaling activity measures'. The abstract concludes: 'The results suggest that ME/CFS metabolism is dysregulated such that alternatives to glycolysis are more heavily utilised than in controls to provide the mitochondria with oxidisable substrates.'
Paper here Thread here
Journal of Translational Medicine
"A systematic review of nutraceutical interventions for mitochondrial dysfunctions in ME/CFS" by Marshall-Gradisnik et al.
The authors found 9 studies over the last 25 years, some of which reported improvements in fatigue. They conclude more research using well designed studies is needed.
Article here Thread here
...............
Coming events
UK - Action for ME UK-wide self-advocacy online workshop, Wednesday 10 March from 2 - 4pm. It will focus on knowing your rights, getting your voice heard, and exploring barriers people with M.E. face to accessing services and support.
Details and sign up here Thread here
.................
Covid-19 and ME
Long Covid Physio "Fatigue and Post-Exertion Malaise"
This podcast episode is an interesting conversation with Dr. Todd Davenport, professor and Vice-Chair in the Department of Physical Therapy, University of the Pacific, Stockton, California and advisor to the Workwell Foundation. He talks about his research on ME/CFS, about PEM and lessons that can be shared between ME/CFS and Long Covid. Duration: 56 min.
Podcast as YouTube video here Thread here
Other items of interest
Yahoo!life "Dr. Fauci Warns These COVID Symptoms May Never Go Away"
Article here Thread here
Body Politic "Response Statement on COVID recoveries"
Statement here Thread here
Das Erste "Corona-Langzeitfolge: Schwere Versorgungsmängel beim Chronischen Fatigue Syndrom"
TV report here Thread here
Yahoo!life "A COVID-19 long-hauler details his year of 'hell'"
Article here Thread here
..................
S4ME social media: Facebook, Twitter and You Tube
News
Norway Opinion piece by civil engineer and ME patient Benedikte Monrad-Krohn for a news site about research. She urges to listen and believe patients, and not to generalise from anecdotes to a whole patient population, but rather focus on finding the right treatment for the right patients.
Article here Thread here
France The High Authority for Health (Haute Autorité de la Santé) has published a guideline on long covid. It doesn’t refer to ME/CFS and only mentions that it may take a while to recover from viral infections. An additional document about functional somatic symptoms (troubles somatiques fonctionnels) explicitly states that, although the cause of these symptoms is not well understood, they are often maintained by psychological factors and social circumstances.
Documents here Thread here
ME/CFS Skeptic "From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome." Michiel Tack and Evelien Van Den Brink have written a new blog post where they analyze the controversial views of Canadian historian Edward Shorter on ME/CFS. They write: “When someone writes extremely dismissively about ME/CFS, it is common to find a mention of Edward Shorter in their references (if they have any).”
Article here Thread here
ABC (Nightlife), Australia The Puzzle Solver by Tracie White
Radio interview with author Tracie White about her book "The Puzzle Solver". She talks about Whitney Dafoe and his severe ME, about his father Ron Davis and his effort to solve the disease and also about some of the history of the disease. Duration: 24 min.
Interview here Thread here
...............
Trial by Error by David Tuller
Happy Tenth Anniversary, PACE Trial!
It's ten years since the scandalous PACE trial was published. But this also became the starting point of David Tuller's enormous journalistic and academic effort for improving research into ME. "As I recognized the huge resistance being mounted to stave off change, I gradually become obsessed with a core feature of this entire saga: How was it possible that an entire academic and medical establishment could accept as legitimate a study in which participants could be “recovered” on key measures at baseline?"
Article here Thread here
Trial By Error: Hughes-Tuller Comment on Wessely-Chalder CBT Study Rejected by Journal, Posted Here
Dr David Tuller and Professor Brian Hughes have issued a detailed analysis of the data from Kings College on cognitive behaviour therapy for patients with chronic fatigue and CFS. Their manuscript was rejected by the Journal of the Royal Society of Medicine and published on Virology Blog. Tuller & Hughes argue that data from Kings College suffer from various methodological weakness including sampling ambiguity, survivor bias, missing data, and lack of a control group, and that a formal published correction is indicated.
Article here Thread here
...............
Research news
Germany Bhupesh Prusty, via Twitter: 'To bridge the knowledge gap between LongCovid and ME/CFS, we have acquired 2 grants worth almost 1 million Euro. Two new projects employing world class, state-of-the-art single cell RNA & protein biology will soon kick start in our group.' One grant was from ME Research UK.
Thread with link here
USA "Ohio State researchers isolate biomarker to test for chronic fatigue syndrome". Article on the university website about the paper published in January "ME/CFS: The Human Herpesviruses Are Back!"
Article here Thread here
USA "Chronic Illness: The Case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis" The research team of Leonard Jason has written a chapter on ME/CFS in the Handbook of Research Methods in Health Psychology. One section describes existing case definitions for ME and CFS, highlighting their limitations and the resulting methodological complications for researchers and clinicians.
Article here Thread here
..................
Biomedical research
International Journal of Molecular Sciences
"Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts" by Missailidis, Fisher et al.
This research group in Melbourne, Australia have already reported on research using lymphoblast cell lines from people with ME/CFS and healthy controls to investigate energy production. In this paper they report on further tests on these cells using 'whole-cell transcriptomics, proteomics and energy stress signaling activity measures'. The abstract concludes: 'The results suggest that ME/CFS metabolism is dysregulated such that alternatives to glycolysis are more heavily utilised than in controls to provide the mitochondria with oxidisable substrates.'
Paper here Thread here
Journal of Translational Medicine
"A systematic review of nutraceutical interventions for mitochondrial dysfunctions in ME/CFS" by Marshall-Gradisnik et al.
The authors found 9 studies over the last 25 years, some of which reported improvements in fatigue. They conclude more research using well designed studies is needed.
Article here Thread here
...............
Coming events
UK - Action for ME UK-wide self-advocacy online workshop, Wednesday 10 March from 2 - 4pm. It will focus on knowing your rights, getting your voice heard, and exploring barriers people with M.E. face to accessing services and support.
Details and sign up here Thread here
.................
Covid-19 and ME
Long Covid Physio "Fatigue and Post-Exertion Malaise"
This podcast episode is an interesting conversation with Dr. Todd Davenport, professor and Vice-Chair in the Department of Physical Therapy, University of the Pacific, Stockton, California and advisor to the Workwell Foundation. He talks about his research on ME/CFS, about PEM and lessons that can be shared between ME/CFS and Long Covid. Duration: 56 min.
Podcast as YouTube video here Thread here
Other items of interest
Yahoo!life "Dr. Fauci Warns These COVID Symptoms May Never Go Away"
Article here Thread here
Body Politic "Response Statement on COVID recoveries"
Statement here Thread here
Das Erste "Corona-Langzeitfolge: Schwere Versorgungsmängel beim Chronischen Fatigue Syndrom"
TV report here Thread here
Yahoo!life "A COVID-19 long-hauler details his year of 'hell'"
Article here Thread here
..................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 22nd February 2021
News and articles
Finland New ME/CFS guidelines have been published by The Finnish Medical Association Duodecim. EMEA Finland has been part of the process. According to a press release from Duodecim the guidelines emphasise that PEM is required for diagnosis and pacing is recommended as part of treatment and rehabilitation.
Thread with more information here
American Journal of Nursing
"UK Moves to Revise Guidelines for Treatment of Chronic Fatigue Syndrome" by Karen Roush.
This short article reports the changes in the way ME/CFS has been viewed in the USA and UK, the flawed PACE trial, and rejection of CBT/GET, first by the CDC and now by NICE.
Article here Thread here
Guardian "A Still Life by Josie George review – memoir of a mystery illness".
Reviewer Blake Morrison praises this autobiography by ME sufferer Josie George. 'What’s seductive is her honesty as she lays herself open and works things out on the hoof, distilling her ideas, reappraising the past, living intensely and watching intently, until – the inevitable price – she’s laid low again with chronic fatigue.'
Article here Thread here
..............
Research news
USA - Study recruiting
"Analysis of Post-exertional Malaise Using a Two-day CPET in People With ME/CFS"
'This study is a component of the Cornell ME/CFS Collaborative Research Center (CRC). Blood samples taken before and after CPET will be utilized in associated projects with the Cornell ME/CFS CRC.' 90 patients and 90 controls will participate at 3 sites in New York and Los Angeles. End date August 2022.
Update here Thread here
Cochrane Following a complaint by Caroline Struthers, Cochrane’s CEO Mark Wilson has recommended amending the editorial note to their 2008 review on cognitive behaviour therapy for CFS. He proposes the note to state “This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision-making. The author team is no longer available to maintain the review.”
Thread with the letter by Mark Wilson here
Solve ME research grants The Ramsay Grant program is now accepting applications for research grants to study ME/CFS and Long-Covid. Application deadline is April 30, 2021.
Details here Thread here
...............
Biomedical research
Nature - Scientific Reports
"Recursive ensemble feature selection [REFS] provides a robust mRNA expression signature for ME/CFS", by Metselaar et al.
REFS analysis of publicly available mRNA expression data in peripheral blood mononuclear cells (93 patients, 25 controls) found 'a signature of 23 genes capable of distinguishing cases and controls'. The team validated the results on a different platform in DNA methylation data (99 patients and 50 controls). 'Finally, ten of the 23 genes could be interpreted in the context of the derailed immune system of ME/CFS.'
Article here Thread here
..............
Covid-19 and ME
USA - NIH "NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19"
This director's message says among other that studies on PASC (Post-Acute Sequelae of SARS-CoV-2) "will teach us about other post-viral infections and diseases with similar symptoms, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)".
Message here Thread here
Trial by Error by David Tuller "National Institutes of Health Director Francis Collins on Plans for Long COVID Research"
On Collin's announcement of NIH's plans for funding research into Long COVID. About how this can be beneficial also for ME/CFS patients, but that there's also reason to be wary of premature conclusions concerning Long COVID and ME/CFS being the same.
Article here Thread here
Paris International Film Festival Special Closing Panel - The Crisis: Post Covid Symptoms with Stanford University
"On this panel, we will dive into unraveling a chronic complex illness known as "Chronic Fatigue Syndrome" or ME/CFS and how it is related to what we are seeing in COVID". Panel: Dr. Ronald David, Dr. Ami Mac and Dr. Michael Snyder. Duration: 1 h 10 m.
Panel discussion here Thread here
UK - BBC Horizon "2021: Coronavirus Special - What We Know Now" includes an excellent 5 minute section on Long Covid and ME/CFS with Dr David Strain who is BMA lead on the NHS Long Covid task force, and is also researching ME/CFS. He emphasises the importance of rest even with mild Covid-19, and staying within the energy envelope. He draws parallels with ME/CFS which he emphasises is a physical disease that has not been well recognised. He is planning research comparing LC and ME/CFS, looking at mitochondria and microcirculation.
Horizon program here (BBC iplayer, UK only, 1 hour)
You tube clip of long Covid section here (5 minutes) Thread here
Medical Science Monitor "Historical Insight into Infections and Disorders Associated with Neurological and Psychiatric Sequelae Similar to Long COVID" by G. Stefano. Includes ME/CFS/PVFS.
Article here Thread here
Long Covid Alliance The leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who will work together to address challenges faced by "COVID long haulers" and related post-viral illnesses.
Press Release here Website here Thread here
The BMJ opinion
"Learning from doctors with long covid"
Two GP’s Sarah Burns and Sue Warren have started a support group for doctors with long covid. In this opinion piece on BMJ Blogs, they write: “The Doctors In Distress groups were the only place some could talk freely about their experiences, losses, and vulnerabilities, and reach a deeper understanding. The therapeutic power of belonging to a group, being able to share experiences, receive support, and provide hope have been described as universal features of groups in different settings.”
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
News and articles
Finland New ME/CFS guidelines have been published by The Finnish Medical Association Duodecim. EMEA Finland has been part of the process. According to a press release from Duodecim the guidelines emphasise that PEM is required for diagnosis and pacing is recommended as part of treatment and rehabilitation.
Thread with more information here
American Journal of Nursing
"UK Moves to Revise Guidelines for Treatment of Chronic Fatigue Syndrome" by Karen Roush.
This short article reports the changes in the way ME/CFS has been viewed in the USA and UK, the flawed PACE trial, and rejection of CBT/GET, first by the CDC and now by NICE.
Article here Thread here
Guardian "A Still Life by Josie George review – memoir of a mystery illness".
Reviewer Blake Morrison praises this autobiography by ME sufferer Josie George. 'What’s seductive is her honesty as she lays herself open and works things out on the hoof, distilling her ideas, reappraising the past, living intensely and watching intently, until – the inevitable price – she’s laid low again with chronic fatigue.'
Article here Thread here
..............
Research news
USA - Study recruiting
"Analysis of Post-exertional Malaise Using a Two-day CPET in People With ME/CFS"
'This study is a component of the Cornell ME/CFS Collaborative Research Center (CRC). Blood samples taken before and after CPET will be utilized in associated projects with the Cornell ME/CFS CRC.' 90 patients and 90 controls will participate at 3 sites in New York and Los Angeles. End date August 2022.
Update here Thread here
Cochrane Following a complaint by Caroline Struthers, Cochrane’s CEO Mark Wilson has recommended amending the editorial note to their 2008 review on cognitive behaviour therapy for CFS. He proposes the note to state “This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision-making. The author team is no longer available to maintain the review.”
Thread with the letter by Mark Wilson here
Solve ME research grants The Ramsay Grant program is now accepting applications for research grants to study ME/CFS and Long-Covid. Application deadline is April 30, 2021.
Details here Thread here
...............
Biomedical research
Nature - Scientific Reports
"Recursive ensemble feature selection [REFS] provides a robust mRNA expression signature for ME/CFS", by Metselaar et al.
REFS analysis of publicly available mRNA expression data in peripheral blood mononuclear cells (93 patients, 25 controls) found 'a signature of 23 genes capable of distinguishing cases and controls'. The team validated the results on a different platform in DNA methylation data (99 patients and 50 controls). 'Finally, ten of the 23 genes could be interpreted in the context of the derailed immune system of ME/CFS.'
Article here Thread here
..............
Covid-19 and ME
USA - NIH "NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19"
This director's message says among other that studies on PASC (Post-Acute Sequelae of SARS-CoV-2) "will teach us about other post-viral infections and diseases with similar symptoms, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)".
Message here Thread here
Trial by Error by David Tuller "National Institutes of Health Director Francis Collins on Plans for Long COVID Research"
On Collin's announcement of NIH's plans for funding research into Long COVID. About how this can be beneficial also for ME/CFS patients, but that there's also reason to be wary of premature conclusions concerning Long COVID and ME/CFS being the same.
Article here Thread here
Paris International Film Festival Special Closing Panel - The Crisis: Post Covid Symptoms with Stanford University
"On this panel, we will dive into unraveling a chronic complex illness known as "Chronic Fatigue Syndrome" or ME/CFS and how it is related to what we are seeing in COVID". Panel: Dr. Ronald David, Dr. Ami Mac and Dr. Michael Snyder. Duration: 1 h 10 m.
Panel discussion here Thread here
UK - BBC Horizon "2021: Coronavirus Special - What We Know Now" includes an excellent 5 minute section on Long Covid and ME/CFS with Dr David Strain who is BMA lead on the NHS Long Covid task force, and is also researching ME/CFS. He emphasises the importance of rest even with mild Covid-19, and staying within the energy envelope. He draws parallels with ME/CFS which he emphasises is a physical disease that has not been well recognised. He is planning research comparing LC and ME/CFS, looking at mitochondria and microcirculation.
Horizon program here (BBC iplayer, UK only, 1 hour)
You tube clip of long Covid section here (5 minutes) Thread here
Medical Science Monitor "Historical Insight into Infections and Disorders Associated with Neurological and Psychiatric Sequelae Similar to Long COVID" by G. Stefano. Includes ME/CFS/PVFS.
Article here Thread here
Long Covid Alliance The leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who will work together to address challenges faced by "COVID long haulers" and related post-viral illnesses.
Press Release here Website here Thread here
The BMJ opinion
"Learning from doctors with long covid"
Two GP’s Sarah Burns and Sue Warren have started a support group for doctors with long covid. In this opinion piece on BMJ Blogs, they write: “The Doctors In Distress groups were the only place some could talk freely about their experiences, losses, and vulnerabilities, and reach a deeper understanding. The therapeutic power of belonging to a group, being able to share experiences, receive support, and provide hope have been described as universal features of groups in different settings.”
Article here Thread here
...................
S4ME social media: Facebook, Twitter and You Tube