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News in Brief - March 2020
- Thread starter Trish
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Week beginning 2nd March 2020
News
Germany Millions Missing is growing larger in Germany. Nine cities, three times more than in the last two years, have announced plans to create a Millions Missing event in 2020, namely: Aachen, Berlin, Erlangen, Freiburg, Gütersloh, Halle, München, Münster and Ravensburg. In Berlin a group of pwME and supporters will form the letters SOS in front of the German Bundestag.
Info here Thread here
Germany Martina Stamm-Fibich, representative of the SPD parliamentary group in the Bundestag and member of the health committee, comments on the first parliamentary technical discussion on ME/CFS on March 5. Stamm-Fibich writes that it has been made clear that there is an urgent need for action in the area of care for ME/CFS patients and she hopes that the research by Prof. Scheibenbogen will receive the necessary funding.
Article here Thread here
Canada Dr. Alain Moreau, director of the "ICanCME" (Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis) Research Network, has posted a brief update on the group's activities.
Update here Thread here
...........................
Trial by Error by David Tuller
New Biopsychosocial Study of Fatigue in HIV Patients
About the low research quality of Prof. Trudie Chalder's new study "A biopsychosocial Approach to HIV Fatigue: A Cross-Sectional and Prospective Analysis to Identify Key Modifiable Factors"
Article here Thread here
............................
From the media, other articles, podcasts, videos...
Denmark Long article about the scientific debate on graded exercise as ME treatment at a news site about research. Lillebeth Larun, Catrine Engsig, Per Fink and Jonas Bergquist are interviewed.
Article here (in Danish) Thread here
Coronavirus "Message from Dr Nigel Speight, Medical Advisor to 25% ME Group".
Two page article gives some commonsense advice on avoiding infection.
Thread with article here
Norway Opinion piece in the Journal of the Norwegian Psychologist Association by psychologist Grete Lilledalen warning against the biopsychosocial approach to ME
Thread with link and google translation here
UK In a video published by the Quadram Institute, Dr Andy Atkin, lecturer in behavioural epidemiology, gives an overview of how physical activity will be measured in the RESTORE-ME study using a wearable movement sensor.
Video here Thread here
...............................
Useful resources
Activity Management for ME/CFS Forum member Hutan has written a 3 page document full of useful advice about pacing and managing your activity levels. The document is aimed particularly for people newly diagnosed with ME/CFS.
Thread with link to document here
...............................
Biomedical research
Journal of Medical Virology
"Cytomegalovirus, Epstein‐Barr Virus and Human Herpesvirus 6 Infections in Patients with ME/CFS" by Shikova et al.
58 Bulgarian ME/CFS patients and 50 healthy controls were tested for latent and active CMV, EBV and HHV-6 infections. A higher rate of active EBV was found in the ME/CFS patients.
Paper here Thread here
Medical Hypotheses
"From IBS to ME – The dysbiotic march hypothesis" by Berstad et al.
1100 patients from an IBS clinic were studied. Most reported high use of antibiotics in childhood, and many had other symptoms such as pain and fatigue. 65% were diagnosed with ME. The authors hypothesise the additional symptoms could result from intestinal dysbiosis resulting from antibiotic use.
Article here Thread here
..............................
Other research
IntechOpen
“Self-Management of Chronic Fatigue Syndrome in Adolescents” by Rowe et al.
Australian clinician Katherine Rowe and colleagues have written an open-access, peer-reviewed book chapter on CFS in adolescents. The chapter describes the management approach taken by the CFS outpatient clinic at the Royal Children’s Hospital in Melbourne, which has been functioning since 1989.
Chapter here Thread here
Scientific Reports
“Irritable bowel, chronic widespread pain, chronic fatigue and related syndromes are prevalent and highly overlapping in the general population: DanFunD” by Peterson et al.
In this study, the Danish research team of Per Fink reports that the prevalence of functional somatic syndromes was 9.3% and for bodily distress syndrome 10.7%. The prevalence of CFS was not assessed. Instead the authors report a prevalence of chronic fatigue of 6.1%.
Article here Thread here
.............................
Coming events
UK CFS/ME Research Collaborative (CMRC) conference 10th and 11th March 2020. Videos will be available later.
Thread with details here
UK ME Association "The Cambridge Lectures: Demystifying ME/CFS" University of Cambridge School of Clinical Medicine on the 19th March, from 17:30-19:00.
Talks for medical students and health professionals by Dr Charles Shepherd, Dr Nina Muirhead and Caroline Kingdon.
Information here Thread here
UK #MEAction event at the London School of Hygiene and Tropical Medicine: "Diagnosis, Management and Care of ME", 1st April, 6 - 9pm.
A meeting for doctors and other health professionals.
Unrest will be shown and the panel includes Dr David Tuller, Dr Nigel Speight, Dr William Weir and Caroline Kingdon.
Details here Thread here
USA During the Solve ME/CFS Advocacy week (April 19-26) there will be an EmPOWER M.E. Summit on Monday, April 20, from 9 am to 12:30 pm EST. This event will be live-streamed for those who cannot attend in person but you must register in advance (free).
Registration link here Thread here
..................................
S4ME social media: Facebook, Twitter and You Tube
News
Germany Millions Missing is growing larger in Germany. Nine cities, three times more than in the last two years, have announced plans to create a Millions Missing event in 2020, namely: Aachen, Berlin, Erlangen, Freiburg, Gütersloh, Halle, München, Münster and Ravensburg. In Berlin a group of pwME and supporters will form the letters SOS in front of the German Bundestag.
Info here Thread here
Germany Martina Stamm-Fibich, representative of the SPD parliamentary group in the Bundestag and member of the health committee, comments on the first parliamentary technical discussion on ME/CFS on March 5. Stamm-Fibich writes that it has been made clear that there is an urgent need for action in the area of care for ME/CFS patients and she hopes that the research by Prof. Scheibenbogen will receive the necessary funding.
Article here Thread here
Canada Dr. Alain Moreau, director of the "ICanCME" (Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis) Research Network, has posted a brief update on the group's activities.
Update here Thread here
...........................
Trial by Error by David Tuller
New Biopsychosocial Study of Fatigue in HIV Patients
About the low research quality of Prof. Trudie Chalder's new study "A biopsychosocial Approach to HIV Fatigue: A Cross-Sectional and Prospective Analysis to Identify Key Modifiable Factors"
Article here Thread here
............................
From the media, other articles, podcasts, videos...
Denmark Long article about the scientific debate on graded exercise as ME treatment at a news site about research. Lillebeth Larun, Catrine Engsig, Per Fink and Jonas Bergquist are interviewed.
Article here (in Danish) Thread here
Coronavirus "Message from Dr Nigel Speight, Medical Advisor to 25% ME Group".
Two page article gives some commonsense advice on avoiding infection.
Thread with article here
Norway Opinion piece in the Journal of the Norwegian Psychologist Association by psychologist Grete Lilledalen warning against the biopsychosocial approach to ME
Thread with link and google translation here
UK In a video published by the Quadram Institute, Dr Andy Atkin, lecturer in behavioural epidemiology, gives an overview of how physical activity will be measured in the RESTORE-ME study using a wearable movement sensor.
Video here Thread here
...............................
Useful resources
Activity Management for ME/CFS Forum member Hutan has written a 3 page document full of useful advice about pacing and managing your activity levels. The document is aimed particularly for people newly diagnosed with ME/CFS.
Thread with link to document here
...............................
Biomedical research
Journal of Medical Virology
"Cytomegalovirus, Epstein‐Barr Virus and Human Herpesvirus 6 Infections in Patients with ME/CFS" by Shikova et al.
58 Bulgarian ME/CFS patients and 50 healthy controls were tested for latent and active CMV, EBV and HHV-6 infections. A higher rate of active EBV was found in the ME/CFS patients.
Paper here Thread here
Medical Hypotheses
"From IBS to ME – The dysbiotic march hypothesis" by Berstad et al.
1100 patients from an IBS clinic were studied. Most reported high use of antibiotics in childhood, and many had other symptoms such as pain and fatigue. 65% were diagnosed with ME. The authors hypothesise the additional symptoms could result from intestinal dysbiosis resulting from antibiotic use.
Article here Thread here
..............................
Other research
IntechOpen
“Self-Management of Chronic Fatigue Syndrome in Adolescents” by Rowe et al.
Australian clinician Katherine Rowe and colleagues have written an open-access, peer-reviewed book chapter on CFS in adolescents. The chapter describes the management approach taken by the CFS outpatient clinic at the Royal Children’s Hospital in Melbourne, which has been functioning since 1989.
Chapter here Thread here
Scientific Reports
“Irritable bowel, chronic widespread pain, chronic fatigue and related syndromes are prevalent and highly overlapping in the general population: DanFunD” by Peterson et al.
In this study, the Danish research team of Per Fink reports that the prevalence of functional somatic syndromes was 9.3% and for bodily distress syndrome 10.7%. The prevalence of CFS was not assessed. Instead the authors report a prevalence of chronic fatigue of 6.1%.
Article here Thread here
.............................
Coming events
UK CFS/ME Research Collaborative (CMRC) conference 10th and 11th March 2020. Videos will be available later.
Thread with details here
UK ME Association "The Cambridge Lectures: Demystifying ME/CFS" University of Cambridge School of Clinical Medicine on the 19th March, from 17:30-19:00.
Talks for medical students and health professionals by Dr Charles Shepherd, Dr Nina Muirhead and Caroline Kingdon.
Information here Thread here
UK #MEAction event at the London School of Hygiene and Tropical Medicine: "Diagnosis, Management and Care of ME", 1st April, 6 - 9pm.
A meeting for doctors and other health professionals.
Unrest will be shown and the panel includes Dr David Tuller, Dr Nigel Speight, Dr William Weir and Caroline Kingdon.
Details here Thread here
USA During the Solve ME/CFS Advocacy week (April 19-26) there will be an EmPOWER M.E. Summit on Monday, April 20, from 9 am to 12:30 pm EST. This event will be live-streamed for those who cannot attend in person but you must register in advance (free).
Registration link here Thread here
..................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 9th March 2020
News
Coronavirus There is much discussion on the forum of the developing situation with Covid-19 around the world, the science, how it might affect people with ME, and how we can take care of ourselves. Threads on different aspects have been listed on a single thread to make them easy to find.
Thread here
UK CMRC Conference was held this week. Posts on twitter gave a flavour of the talks and some have been posted on the forum. Videos of all the talks are now available. Speakers included Chris Ponting, Karl Morten, Heidi Nicholl, Alain Moreau, Nina Muirhead, Michael van Elzakker and Bhupesh Prusty.
Action for ME post here Link to videos here Thread here
EUROMENE Conference From 12 to 13 March a conference of the European Network on ME/CFS (EUROMENE) took place in Riga, Latvia. More information about the presentations will be made available after the conference on the EUROMENE website.
Website here Thread here
UK - Priority Setting Partnership Announced at CMRC conference, this project will bring people with ME, carers and clinicians together to prioritise unanswered ME/CFS questions to inform future research. It is facilitated by the James Lynd Alliance which has done similar projects for other diseases, and by Action for ME. The partnership is funded by the government bodies MRC, NIHR and the Scottish equivalent.
Thread here
Cochrane has published information on the update of their review on ‘Exercise therapy for chronic fatigue syndrome’. The author team of the current review have stepped down. The review’s revision and update will be conducted by systematic reviewers from Cochrane Response (Cochrane’s evidence consultancy unit), and additional new co-authors are being considered. The complete updating process for the review is expected to take about two years from early 2020.
Article here Thread here
25% ME Group 25th anniversary international newletter. The charity provides information and support for people with severe ME, including running a Facebook group, and campaigns for better care.
For Severe ME Awareness Day on 8 August, 25% ME Group have invited members of the charity and the 25% ME Facebook group to participate in a project to make Severe ME visible. They have been asked to submit Stories and Images of their lives with Severe ME.
Newsletter here Thread here
UK CMRC January meeting minutes with reports from various working groups are now available.
Thread with link here
...............................
Useful Resources
Dialogues for a neglected illness now has its own website. The project provides short information videos about ME/CFS and is funded by the Wellcome Public Engagement Fund. Films now available online are: Introduction to ME/CFS; PEM; Graded Exercise Therapy. In each short educational film, experts give an excellent overview of the topic.
Website here Thread here
......................
Biomedical research
ESC Heart Failure
"Peripheral endothelial dysfunction in ME/CFS" by Scherbakov et al
Endothelial disfunction (ED) 'describes abnormal function and alteration of endothelial cells leading to reduced vasodilatative response'. It is a risk factor for cardiovascular disease.
Peripheral ED was found in 18 of 35 patients (51%) with ME/CFS and in 4 healthy subjects (20%). It was associated with disease severity and severity of immune symptoms in patients. ED improved in 5 of 6 patients treated with immunoaborption.
Paper here Thread here
IEEE Transactions on Biomedical Engineering
"Characterization of Cortisol Dysregulation in Fibromyalgia and Chronic Fatigue Syndromes: A State-Space Approach" by Pednekar et al.
The authors modelled secretion and clearance rates of cortisol in FM and CFS patients and healthy controls. They concluded that there are different rates in the three groups, and speculate that this could help with developing treatments.
Abstract here Thread here
..........................
Other research
BMJ Paediatrics Open
"Interventions to treat pain in paediatric CFS/ME: a systematic review" by Ascough et al.
In a systematic review, the research team of Esther Crawley only found five treatment studies that measured pain at baseline and follow-up in paediatric ME/CFS. The authors conclude that “there is limited evidence that treatment helps improve pain scores.”
Article here Thread here
..........................
Trial recruitment
Norway The Comeback Study, a trial on fecal transplantation and ME in Harstad is still recruiting.
Thread with announcement here
............................
Coming events
Some planned events have been cancelled, postponed or are going online due to the coronavirus pandemic.
UK The Sheffield ME & FM group meeting on March 16th at 2pmis going ahead will be online only with David Tuller presenting through a video link his talk 'Medically Unexplained Symptoms: Shaky evidence, shaky practice'. It will be livestreamed.
Thread here
Amended - now online only.
UK The Cambridge Lectures "Demystifying ME/CFS" planned for 19th March have been postponed indefinitely.
Thread here
UK The #MEAction event "Medical Education Event “Diagnosis, Management & Care of ME" on 1st April in London, hosted by LSHTM has been postponed.
Thread here
..........................
Advocacy
USA - Solve M.E. has announced that their 2020 ME/CFS Advocacy Week (April 19-26) is transitioning to online events, no in-person meetings, due to COVID-19. Registration forms for the EmPOWER M.E. Roundtable 2020 LiveStream (Monday, April 20) and Remote Advocacy Day (Tuesday, April 21) are available now. Registration deadline is March 27.
Details here Thread here
Worldwide All branches of #MEAction have cancelled any in-person events for #MillionsMissing 2020. #MillionsMissing will still happen on May 12th but all events will be virtual/online because of COVID-19.
Announcement here Thread here
..........................
S4ME social media: Facebook, Twitter and You Tube
News
Coronavirus There is much discussion on the forum of the developing situation with Covid-19 around the world, the science, how it might affect people with ME, and how we can take care of ourselves. Threads on different aspects have been listed on a single thread to make them easy to find.
Thread here
UK CMRC Conference was held this week. Posts on twitter gave a flavour of the talks and some have been posted on the forum. Videos of all the talks are now available. Speakers included Chris Ponting, Karl Morten, Heidi Nicholl, Alain Moreau, Nina Muirhead, Michael van Elzakker and Bhupesh Prusty.
Action for ME post here Link to videos here Thread here
EUROMENE Conference From 12 to 13 March a conference of the European Network on ME/CFS (EUROMENE) took place in Riga, Latvia. More information about the presentations will be made available after the conference on the EUROMENE website.
Website here Thread here
UK - Priority Setting Partnership Announced at CMRC conference, this project will bring people with ME, carers and clinicians together to prioritise unanswered ME/CFS questions to inform future research. It is facilitated by the James Lynd Alliance which has done similar projects for other diseases, and by Action for ME. The partnership is funded by the government bodies MRC, NIHR and the Scottish equivalent.
Thread here
Cochrane has published information on the update of their review on ‘Exercise therapy for chronic fatigue syndrome’. The author team of the current review have stepped down. The review’s revision and update will be conducted by systematic reviewers from Cochrane Response (Cochrane’s evidence consultancy unit), and additional new co-authors are being considered. The complete updating process for the review is expected to take about two years from early 2020.
Article here Thread here
25% ME Group 25th anniversary international newletter. The charity provides information and support for people with severe ME, including running a Facebook group, and campaigns for better care.
For Severe ME Awareness Day on 8 August, 25% ME Group have invited members of the charity and the 25% ME Facebook group to participate in a project to make Severe ME visible. They have been asked to submit Stories and Images of their lives with Severe ME.
Newsletter here Thread here
UK CMRC January meeting minutes with reports from various working groups are now available.
Thread with link here
...............................
Useful Resources
Dialogues for a neglected illness now has its own website. The project provides short information videos about ME/CFS and is funded by the Wellcome Public Engagement Fund. Films now available online are: Introduction to ME/CFS; PEM; Graded Exercise Therapy. In each short educational film, experts give an excellent overview of the topic.
Website here Thread here
......................
Biomedical research
ESC Heart Failure
"Peripheral endothelial dysfunction in ME/CFS" by Scherbakov et al
Endothelial disfunction (ED) 'describes abnormal function and alteration of endothelial cells leading to reduced vasodilatative response'. It is a risk factor for cardiovascular disease.
Peripheral ED was found in 18 of 35 patients (51%) with ME/CFS and in 4 healthy subjects (20%). It was associated with disease severity and severity of immune symptoms in patients. ED improved in 5 of 6 patients treated with immunoaborption.
Paper here Thread here
IEEE Transactions on Biomedical Engineering
"Characterization of Cortisol Dysregulation in Fibromyalgia and Chronic Fatigue Syndromes: A State-Space Approach" by Pednekar et al.
The authors modelled secretion and clearance rates of cortisol in FM and CFS patients and healthy controls. They concluded that there are different rates in the three groups, and speculate that this could help with developing treatments.
Abstract here Thread here
..........................
Other research
BMJ Paediatrics Open
"Interventions to treat pain in paediatric CFS/ME: a systematic review" by Ascough et al.
In a systematic review, the research team of Esther Crawley only found five treatment studies that measured pain at baseline and follow-up in paediatric ME/CFS. The authors conclude that “there is limited evidence that treatment helps improve pain scores.”
Article here Thread here
..........................
Trial recruitment
Norway The Comeback Study, a trial on fecal transplantation and ME in Harstad is still recruiting.
Thread with announcement here
............................
Coming events
Some planned events have been cancelled, postponed or are going online due to the coronavirus pandemic.
UK The Sheffield ME & FM group meeting on March 16th at 2pm
Thread here
Amended - now online only.
UK The Cambridge Lectures "Demystifying ME/CFS" planned for 19th March have been postponed indefinitely.
Thread here
UK The #MEAction event "Medical Education Event “Diagnosis, Management & Care of ME" on 1st April in London, hosted by LSHTM has been postponed.
Thread here
..........................
Advocacy
USA - Solve M.E. has announced that their 2020 ME/CFS Advocacy Week (April 19-26) is transitioning to online events, no in-person meetings, due to COVID-19. Registration forms for the EmPOWER M.E. Roundtable 2020 LiveStream (Monday, April 20) and Remote Advocacy Day (Tuesday, April 21) are available now. Registration deadline is March 27.
Details here Thread here
Worldwide All branches of #MEAction have cancelled any in-person events for #MillionsMissing 2020. #MillionsMissing will still happen on May 12th but all events will be virtual/online because of COVID-19.
Announcement here Thread here
..........................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 16th March 2020
Coronavirus (Covid-19)
Forum threads Information and discussions on the Coronavirus pandemic can now be found in a new subforum: Epidemics (including Covid-19). There is a subsection for members only threads.
Subforum here
UK ME Association Guidance by Dr Charles Shepherd. This is being updated every Monday. With the increasing spread of the illness it is important to continue with the advice on handwashing and social distancing. Dr Shepherd warns about misinformation: 'There is no scientific evidence that any drug, vitamin or supplement will reduce the risk of catching this infection or can be used to treat this infection.'
Article here Thread here
.............................
News, articles and videos
Canada The National ME/FM Action Network has published an updated guide to help patients apply for disability benefits from the Canada Pension Plan (CPP).
Guidelines found here Thread here
USA - The Center for Solutions for ME/CFS, a research center at Columbia University, led by Dr. Ian Lipkin, has launched a new website.
Website here Thread here
Medscape "Low-Dose Naltrexone: An Inexpensive Medicine for Many Ills?" Miriam Tucker goes through current research on whether this low cost drug may be used as a treatment for symptom relief in ME/CFS.
Article here Thread here
ME Association "All-party Parliamentary Group on ME: Biomedical Research Meeting Summary" Dr. Charles Shepherd summarises the meeting and presentations by professors Julia Newton, Chris Ponting and dr. Eliana Lacerda. 20 MPs attended. The ME Association encourages people to invite their MP for the next meeting at 29th April and has provided a sample email for this purpose.
Article here Thread here
Nursing 2020 (USA) "Chronic fatigue syndrome - What nurses need to know" by Marianne Bush.
The author describes the core symptoms, lists some biological research findings, suggests (unevidenced) treatments, and recommends the CDC guideline which no longer recommends CBT and GET. The author emphases the need to for nurses to understand CFS is a physical, not a psychological illness, and patient need compassionate care.
Article here Thread here
Trial by Error by David Tuller
"My Virtual Appearance in Sheffield"
A video interview with David Tuller by Sheffield ME & Fibromyalgia Group as substitute for the cancelled talk "Medically Unexplained Symptoms: Shaky Evidence, Shaky Practice". Duration 1h 17 min.
Article and interview here Thread here
"What now?"
Even though many plans are cancelled and changed, David Tuller will fortunately soon go ahead with a new crowdfunding in order to continue his work.
Article here Thread here
...............................
Biomedical research
Clinical Immunology
"Complex syndromes of chronic pain, fatigue and cognitive impairment linked to autoimmune dysautonomia & small fiber neuropathy" by Schoenfeld et al
The authors summarise the role of autoimmunity in CFS and 3 other syndromes. They hypothesise: 'These syndromes could be incorporated in a new concept of autoimmune neurosensory dysautonomia with the common denominators of autoantibodies against G-protein coupled receptors and small fiber neuropathy.' They suggest this idea could be developed to identify a subgroup who might respond to immunotherapy.
Article here Thread here
EUROMENE conference abstracts
A book with abstracts of the presentations at the EUROMENE conference on 12-13 March in Riga has been made available online.
Abstracts here Thread here
Saudi Journal of Biological Sciences
"Isolation of ultrasmall (filterable) bacteria from patients suffering from ME, and patients and staff of a paediatric hospital" by Sulaiman Ali Alharbi.
In this study from Saudi-Arabia, the author reports to have extracted ultrasmall (filterable) bacteria in some patients with ME. The paper, however, doesn’t describe the selection criteria or statistical methods used.
Article here Thread here
...............................
Other research
Medicine, Health Care and Philosophy
"Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis" by Eleanor Byrne.
In this paper, Eleanor Byrne from the Department of Philosophy at the University of York investigates the philosophical concept of epistemic injustice in CFS/ME. As an example she refers to a medical professional’s lack of appreciation for the heterogeneity in aetiology and phenomenology of CFS/ME which may result in a failure to properly respect, listen to or engage with testimony offered by the patient.
Article here Thread here
Psychology of Men & Masculinities
“The real me shining through M.E.”: Visualizing masculinity and identity threat in men with myalgic encephalomyelitis/chronic fatigue syndrome using photovoice and IPA by Wilde et al.
In this study, the authors explore the experiences of 10 men suffering from ME/CFS and how the illness affects their masculine self-worth. The findings highlight unique challenges that men with ME/CFS face such as difficulty receiving social and healthcare support, due to the stigma surrounding their illness and the social and personal expectations as a man to self-manage.
Article here Thread here
...........................
Event cancellation
UK - Invest in ME Research Conference
The 15th International ME Conference in London on 30 May 2020, along with other planned events during International ME Conference Week 2020 have been cancelled due to the Covid-19 pandemic.
Announcement here Thread here
...............................
Advocacy
USA Solve M.E. will hold Advocacy Day congressional meetings on Tuesday, April 21, via remote online and phone systems. All US citizens and residents are invited to register for a meeting. All that's needed is a phone or computer and your story. The Solve M.E. team will supply training and materials. Registration deadline is Friday, March 27.
Registration here Thread here
...............................
Surveys
EFNA Survey. For Brain Awareness Week, The European Federation of Neurological Associations (EFNA) has launched a survey on stigma experienced by people living with a neurological disorder. This survey is open to anyone who is living with a neurological disorder (including ME and CFS) and resides in Europe.
Survey here Thread here
TYMES Trust survey. The Young ME Sufferers (TYMES) Trust, a patient organization that focuses on children with ME and their parents, has issued a new survey. They would like to receive feedback on how the challenges you're facing and how your schools and colleges are supporting you.
Survey here Thread here
.........................
S4ME social media: Facebook, Twitter and You Tube
Coronavirus (Covid-19)
Forum threads Information and discussions on the Coronavirus pandemic can now be found in a new subforum: Epidemics (including Covid-19). There is a subsection for members only threads.
Subforum here
UK ME Association Guidance by Dr Charles Shepherd. This is being updated every Monday. With the increasing spread of the illness it is important to continue with the advice on handwashing and social distancing. Dr Shepherd warns about misinformation: 'There is no scientific evidence that any drug, vitamin or supplement will reduce the risk of catching this infection or can be used to treat this infection.'
Article here Thread here
.............................
News, articles and videos
Canada The National ME/FM Action Network has published an updated guide to help patients apply for disability benefits from the Canada Pension Plan (CPP).
Guidelines found here Thread here
USA - The Center for Solutions for ME/CFS, a research center at Columbia University, led by Dr. Ian Lipkin, has launched a new website.
Website here Thread here
Medscape "Low-Dose Naltrexone: An Inexpensive Medicine for Many Ills?" Miriam Tucker goes through current research on whether this low cost drug may be used as a treatment for symptom relief in ME/CFS.
Article here Thread here
ME Association "All-party Parliamentary Group on ME: Biomedical Research Meeting Summary" Dr. Charles Shepherd summarises the meeting and presentations by professors Julia Newton, Chris Ponting and dr. Eliana Lacerda. 20 MPs attended. The ME Association encourages people to invite their MP for the next meeting at 29th April and has provided a sample email for this purpose.
Article here Thread here
Nursing 2020 (USA) "Chronic fatigue syndrome - What nurses need to know" by Marianne Bush.
The author describes the core symptoms, lists some biological research findings, suggests (unevidenced) treatments, and recommends the CDC guideline which no longer recommends CBT and GET. The author emphases the need to for nurses to understand CFS is a physical, not a psychological illness, and patient need compassionate care.
Article here Thread here
Trial by Error by David Tuller
"My Virtual Appearance in Sheffield"
A video interview with David Tuller by Sheffield ME & Fibromyalgia Group as substitute for the cancelled talk "Medically Unexplained Symptoms: Shaky Evidence, Shaky Practice". Duration 1h 17 min.
Article and interview here Thread here
"What now?"
Even though many plans are cancelled and changed, David Tuller will fortunately soon go ahead with a new crowdfunding in order to continue his work.
Article here Thread here
...............................
Biomedical research
Clinical Immunology
"Complex syndromes of chronic pain, fatigue and cognitive impairment linked to autoimmune dysautonomia & small fiber neuropathy" by Schoenfeld et al
The authors summarise the role of autoimmunity in CFS and 3 other syndromes. They hypothesise: 'These syndromes could be incorporated in a new concept of autoimmune neurosensory dysautonomia with the common denominators of autoantibodies against G-protein coupled receptors and small fiber neuropathy.' They suggest this idea could be developed to identify a subgroup who might respond to immunotherapy.
Article here Thread here
EUROMENE conference abstracts
A book with abstracts of the presentations at the EUROMENE conference on 12-13 March in Riga has been made available online.
Abstracts here Thread here
Saudi Journal of Biological Sciences
"Isolation of ultrasmall (filterable) bacteria from patients suffering from ME, and patients and staff of a paediatric hospital" by Sulaiman Ali Alharbi.
In this study from Saudi-Arabia, the author reports to have extracted ultrasmall (filterable) bacteria in some patients with ME. The paper, however, doesn’t describe the selection criteria or statistical methods used.
Article here Thread here
...............................
Other research
Medicine, Health Care and Philosophy
"Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis" by Eleanor Byrne.
In this paper, Eleanor Byrne from the Department of Philosophy at the University of York investigates the philosophical concept of epistemic injustice in CFS/ME. As an example she refers to a medical professional’s lack of appreciation for the heterogeneity in aetiology and phenomenology of CFS/ME which may result in a failure to properly respect, listen to or engage with testimony offered by the patient.
Article here Thread here
Psychology of Men & Masculinities
“The real me shining through M.E.”: Visualizing masculinity and identity threat in men with myalgic encephalomyelitis/chronic fatigue syndrome using photovoice and IPA by Wilde et al.
In this study, the authors explore the experiences of 10 men suffering from ME/CFS and how the illness affects their masculine self-worth. The findings highlight unique challenges that men with ME/CFS face such as difficulty receiving social and healthcare support, due to the stigma surrounding their illness and the social and personal expectations as a man to self-manage.
Article here Thread here
...........................
Event cancellation
UK - Invest in ME Research Conference
The 15th International ME Conference in London on 30 May 2020, along with other planned events during International ME Conference Week 2020 have been cancelled due to the Covid-19 pandemic.
Announcement here Thread here
...............................
Advocacy
USA Solve M.E. will hold Advocacy Day congressional meetings on Tuesday, April 21, via remote online and phone systems. All US citizens and residents are invited to register for a meeting. All that's needed is a phone or computer and your story. The Solve M.E. team will supply training and materials. Registration deadline is Friday, March 27.
Registration here Thread here
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Surveys
EFNA Survey. For Brain Awareness Week, The European Federation of Neurological Associations (EFNA) has launched a survey on stigma experienced by people living with a neurological disorder. This survey is open to anyone who is living with a neurological disorder (including ME and CFS) and resides in Europe.
Survey here Thread here
TYMES Trust survey. The Young ME Sufferers (TYMES) Trust, a patient organization that focuses on children with ME and their parents, has issued a new survey. They would like to receive feedback on how the challenges you're facing and how your schools and colleges are supporting you.
Survey here Thread here
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S4ME social media: Facebook, Twitter and You Tube
Week beginning 23rd March 2020
Coronavirus (Covid-19) and ME
'COVID-19: an overview of the main facts, data and publications' by Michiel Tack
Thread here
This Week in Virology "Conversation with a COVID-19 patient, Ian Lipkin" audio interview by Vincent Racaniello. 'Ian Lipkin joins Vincent to talk about his experience as a COVID-19 patient, and issues surrounding the disease and SARS-CoV-2 including limiting transmission, antivirals, vaccines, and much more.'
Duration 1 hour 9 minutes
Audio link here Thread here
USA Bateman Horne Center "The Bateman Horne Center teams up to address COVID 19"
Research Director, Dr. Vernon, covers SARS, CoV-2, and COVID-19. - Medical Director, Dr. Bateman, and Physician, Dr. Yellman, provide an overview of COVID-19's impact on the medical system, guidance for personal safety, a preview of potential treatments, and answer frequently asked questions from people with ME/CFS and FM. Video duration 50 minutes
Video here Thread here
UK ME Assocation weekly update 24th March by Dr Charles Shepherd includes the recent Government guidance. The article has been reproduced in David Tuller's Virology blog.
Article here Thread here
UK The ME organisations have written to the supermarkets and the government about the problems of housebound people with ME, who rely on food deliveries from the supermarkets. They have requested that ME be added to the priority list for online ordering of food deliveries.
Copy of letter here Thread here [edit: corrected link]
UK NICE guidelines
All NICE guideline development groups have been put on hold so staff can focus on work related to Covid-19, including producing rapid guidelines for Covid-19 care. This means the ME/CFS guideline due to be published later this year will be delayed.
Thread here
The distant corona connection Wise reflections on the current times from Anil van der Zee who suffers from severe ME. "Due to the coronavirus, the rest of the world suddenly has to join in with what many people with a chronic illness have been dealing with for years"
Article here Thread here
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Biomedical research news
ME Research UK "Calling all researchers - ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS." The call includes funding for PhD studentships.
Articles here and here Thread here
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Biomedical Research
Nature - Scientific Reports
"Human Leukocyte Antigen alleles associated with ME/CFS" by Lande et al. (includes Fluge, Mella).
451 ME/CFS patients compared with data from 4511 healthy controls found a higher frequency of two HLA alleles in the ME patients (19.2%) than in controls, (12.2%). They suggest this points towards involvement of the immune system in ME/CFS pathogenesis.
Article here Thread here
Epub ahead of print
"Metabolic dysfunction in ME/CFS not due to anti-mitochondrial antibodies" by Nilsson et al.
161 ME/CFS patients tested. Abstract concludes: 'the impaired mitochondrial/metabolic dysfunction, observed in ME/CFS, cannot be explained by presence of circulating autoantibodies against the tested mitochondrial epitopes.'
Abstract here Thread here
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Other research
Medical Hypotheses
"Why are assumptions passed off as established knowledge?" by Weisman et al.
Weisman and colleagues offer a critical discussion of myofascial pain, shoulder impingement and central sensitisation. They argue that there’s “a failure by the proponents of these syndromes to structure their scientific arguments in a logically valid fashion, which lead them to promote assumptions to the status of facts.”
Article here Thread here
Mental Health and Illness of Children and Adolescents
"Chronic Fatigue in the Context of Pediatric Physical and Mental Illness" by Loades & Chalder
Maria Loades and Trudie Chalder have written a book chapter on fatigue in pediatric patients as part of the Mental Health and Illness Worldwide book series. The chapter focuses on the cognitive-behavioural model in which fatigue is believed to be maintained by illness perceptions and behavioural responses such as excessive rest. CFS is mentioned as the extreme end of the fatigue continuum.
Book chapter here Thread here
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Event cancellation
USA - IACFS/ME conference Due to new restrictions on group gatherings in New York State the IACFS/ME conference at Stony Brook University scheduled for June 2020 has been cancelled.
Thread here
Worldwide survey Now that the IACFS/ME conference has been cancelled they are considering a possible virtual conference. An anonymous survey has been set up to gather input for this idea.
Survey here Thread here
.........................
S4ME social media: Facebook, Twitter and You Tube
Coronavirus (Covid-19) and ME
'COVID-19: an overview of the main facts, data and publications' by Michiel Tack
Thread here
This Week in Virology "Conversation with a COVID-19 patient, Ian Lipkin" audio interview by Vincent Racaniello. 'Ian Lipkin joins Vincent to talk about his experience as a COVID-19 patient, and issues surrounding the disease and SARS-CoV-2 including limiting transmission, antivirals, vaccines, and much more.'
Duration 1 hour 9 minutes
Audio link here Thread here
USA Bateman Horne Center "The Bateman Horne Center teams up to address COVID 19"
Research Director, Dr. Vernon, covers SARS, CoV-2, and COVID-19. - Medical Director, Dr. Bateman, and Physician, Dr. Yellman, provide an overview of COVID-19's impact on the medical system, guidance for personal safety, a preview of potential treatments, and answer frequently asked questions from people with ME/CFS and FM. Video duration 50 minutes
Video here Thread here
UK ME Assocation weekly update 24th March by Dr Charles Shepherd includes the recent Government guidance. The article has been reproduced in David Tuller's Virology blog.
Article here Thread here
UK The ME organisations have written to the supermarkets and the government about the problems of housebound people with ME, who rely on food deliveries from the supermarkets. They have requested that ME be added to the priority list for online ordering of food deliveries.
Copy of letter here Thread here [edit: corrected link]
UK NICE guidelines
All NICE guideline development groups have been put on hold so staff can focus on work related to Covid-19, including producing rapid guidelines for Covid-19 care. This means the ME/CFS guideline due to be published later this year will be delayed.
Thread here
The distant corona connection Wise reflections on the current times from Anil van der Zee who suffers from severe ME. "Due to the coronavirus, the rest of the world suddenly has to join in with what many people with a chronic illness have been dealing with for years"
Article here Thread here
.......................
Biomedical research news
ME Research UK "Calling all researchers - ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS." The call includes funding for PhD studentships.
Articles here and here Thread here
............................
Biomedical Research
Nature - Scientific Reports
"Human Leukocyte Antigen alleles associated with ME/CFS" by Lande et al. (includes Fluge, Mella).
451 ME/CFS patients compared with data from 4511 healthy controls found a higher frequency of two HLA alleles in the ME patients (19.2%) than in controls, (12.2%). They suggest this points towards involvement of the immune system in ME/CFS pathogenesis.
Article here Thread here
Epub ahead of print
"Metabolic dysfunction in ME/CFS not due to anti-mitochondrial antibodies" by Nilsson et al.
161 ME/CFS patients tested. Abstract concludes: 'the impaired mitochondrial/metabolic dysfunction, observed in ME/CFS, cannot be explained by presence of circulating autoantibodies against the tested mitochondrial epitopes.'
Abstract here Thread here
...................................
Other research
Medical Hypotheses
"Why are assumptions passed off as established knowledge?" by Weisman et al.
Weisman and colleagues offer a critical discussion of myofascial pain, shoulder impingement and central sensitisation. They argue that there’s “a failure by the proponents of these syndromes to structure their scientific arguments in a logically valid fashion, which lead them to promote assumptions to the status of facts.”
Article here Thread here
Mental Health and Illness of Children and Adolescents
"Chronic Fatigue in the Context of Pediatric Physical and Mental Illness" by Loades & Chalder
Maria Loades and Trudie Chalder have written a book chapter on fatigue in pediatric patients as part of the Mental Health and Illness Worldwide book series. The chapter focuses on the cognitive-behavioural model in which fatigue is believed to be maintained by illness perceptions and behavioural responses such as excessive rest. CFS is mentioned as the extreme end of the fatigue continuum.
Book chapter here Thread here
................................
Event cancellation
USA - IACFS/ME conference Due to new restrictions on group gatherings in New York State the IACFS/ME conference at Stony Brook University scheduled for June 2020 has been cancelled.
Thread here
Worldwide survey Now that the IACFS/ME conference has been cancelled they are considering a possible virtual conference. An anonymous survey has been set up to gather input for this idea.
Survey here Thread here
.........................
S4ME social media: Facebook, Twitter and You Tube
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