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News in Brief - February 2020
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Week beginning 3rd February 2020
News, articles and videos
Norway The Kavli Trust continue supporting Øystein Fluge and Olav Mella's research team with a new allocation on 4.7 mill NOK (38 8200 GBP/500 000 USD/460 000 EUR). This will enable further experiments on energy metabolism, gene expression in purified immune cells and autoantibodies in patient's blood.
Article here (Norwegian) Thread here
UK ME Association "The ME Association to Fund Six Student Bursaries for the March 2020 CMRC Research Conference in Bristol | 31 January 2020". The conference is also Continuing Professional Development certified.
Article here Thread here
UK ME Association "New MEA Guide: ME/CFS The Ten Key Aspects of Management" by Dr Charles Shepherd. Topics include diagnosis, treatment, management and dealing with work, education and state benefits. Feedback is invited.
Article with link to the guide here Thread here
Bateman Horne Center video "Postural Biomarkers as Outcome Measures for ME/CFS", Suzanne Vernon, PhD. Duration 19 minutes.
A wearable device that senses angle from vertical has been tested with a small group of moderate and severe ME sufferers and healthy controls to learn whether it is a useful measure of symptom severity. Results expected in a few months.
Video here Thread here
Norway The Norwegian ME Association met with Prime Minister Erna Solberg this week to present their seminar on adapted teaching for pupils with ME.
Thread with summary here
Denmark The Danish ME Association has met with the Danish Health Authority this week. It seems the plan still is to treat ME as a functional disorder despite the unanimous motion from last year by the Danish Parliament to separate ME from that term.
Thread with summary here
New Zealand Herald "Local Focus: The heart-breaking experiences of mothers with ME" by Nathan Morton.
In a 7 minute video and short article, two women with ME and a field officer for CCIS: Complex Chronic Illness Support talk about the devastating effect of ME on their lives, and the difficulties getting the home care they need.
Thread with links here
Broken Battery "What is ME?"
An information film by forum member Adam pwme in an updated version. This seven minute long film gives a good introduction to ME both for lay persons and health professionals.
Thread with film here
Sweden Author and ME sufferer Karin Alvtegen raises alarm of an ongoing health scandal in Sweden with a desperate situation for ME patients.
Article here (Swedish) Thread here
...............................
Trial by Error by David Tuller - more about CBT for Irritable bowel sydrome.
My Letter to Professor Moss-Morris
In this letter David Tuller informs professor Moss-Morris of his recent articles about the licensing deal between Mahana Therapeutics and King's College London. Prof. Moss-Morris was the co-investigator of Assessing Cognitive Behavioural Therapy for IBS (ACTIB trial) which Mahana Therapeutics is based on, and also has stock options in the company as well as having received consultant fee from them.
Article here Thread here
My Letter to One of Mahana's Gastroenterology Advisors
A letter to Dr. Heyman, one of sixteen gastroenterology and psychology advisors listed on Mahana Therapeutics website. Tuller asks whether he believes the company's claims about the ACTIB trial are accurate.
Article here Thread here
.......................................
Biomedical research
Nature - Scientific Reports
"Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in ME/CFS" by Elisa Oltra et al.
Samples from the UK ME Biobank severe ME patients and healthy controls were analysed. The differences found may be useful for developing a diagnostic test, but further larger studies are needed.
Paper here Thread here
Preprint (not yet peer reviewed)
"Cell-Based Blood Biomarkers for ME/CFS" by Missailidis, Fisher et al.
The authors found that three different tests on lymphocytes and lymphoblasts could be biomarkers with good sensitivity but modest specificity. A combination of all three gave much better sensitivity and specificity, but needs confirming with more test samples. The authors conclude: 'This protocol provides a promising biomarker that could assist in more rapid and accurate diagnosis of ME/CFS.'
Preprint here Thread here
International Journal of Sport, Exercise and Health Research
"Potential benefits of a ketogenic diet to improve response and recovery from physical exertion in people with ME/CFS: A feasibility study" by Cossington et al.
Three patients and three healthy controls were given an submaximal exercise test before and after following a ketogenic diet for a week. Some differences were found suggesting metabolic abnormalities in ME/CFS. The authors conclude that a larger study is feasible and warranted.
Paper here Thread here
............................
Other research
BMC psychology
"Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified" by Geraghty and Scott.
Keith Geraghty and Michael J Scott, a clinical psychologist, provide a critical review of the expansion of the Improving Access to Psychological Therapy (IAPT) program to treat patients with medically unexplained symptoms (MUS). The authors argue that the MUS treatment model has an unproven treatment rationale, that it is derived from theory and research in ME/CFS that is highly unpopular and that “the IAPT model of MUS may put CBT therapist and patient on a collision course.” They conclude that “psychotherapy should not become a default when patients’ physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part.”
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade” by Friedberg.
Fred Friedberg, journal editor of Fatigue Biomedicine, Health & Behavior and president of the IACFS/ME looks back at the progress being made over the last decade. Although he concludes that the scientific field of ME/CFS remains small and underdeveloped, Friedberg highlights some important milestones including government-funded reports recognizing the seriousness of ME/CFS and new initiatives for biomedical research sponsored by the NIH.
Article here Thread here
Journal of Advanced Nursing
“Associations of occupational stress, workplace violence and organizational support on chronic fatigue symptoms among nurses” by Li et al.
This Chinese study reports a high CFS prevalence of 6.76% among 1080 nurses. CFS was diagnosed by doctors according to the Fukuda criteria. Higher degrees of overcommitment and workplace violence were identified as significant risk factors associated with CFS. In addition, organizational support was shown as a protective factor in predicting CFS.
Article here Thread here
DePaul researchers unmask misunderstood chronic illness (see last week's news)
The online magazine of the DePaul University in Chicago has written an article on the prevalence study on ME/CFS in children and adolescents, performed by Leonard Jason and colleagues. "The disorder is debilitating", Jason says, "and most youth and even adults who are suffering don’t know they have it or are not taken seriously."
Article here Thread here
Simon McGrath has written a blog about the study explaining its methodology and key findings. McGrath concludes that "Despite the problems of the low response rate, this NIH funded research uses a strong design and is the best study yet on prevalence in young people."
Article here Thread here
............................
Advocacy
#MEAction UK "Take Me Seriously" action targets the UK National Institute for Health and Care Excellence (NICE) ME/CFS treatment guidelines which still include the potentially harmful treatments GET and CBT. #MEAction UK is collecting comments & signatures until February 14. These will be printed on a card and sent to NICE.
Details here Thread here
USA (Florida) Solve ME is asking Florida residents to contact their senators and congress representatives. We need them to sign on to a Florida delegation letter that asks NIH for more funding for ME/CFS research. Deadline Feb. 12.
Details here Thread here
USA Solve ME has announced more details for their 2020 ME/CFS Advocacy Week planned for April 19-26. Participants who want to attend in-person events in Washington, DC, or Bethesda, MA (NIH), should register in advance. Travel stipends of up to $500 are available, register here
Details here Thread here
Global #MEAction is planning Millions Missing events for the week of May 9-17, 2020. To get updates subscribe to email from #MEAction.
Subscribe here Thread here
............................
Fundraising
Germany
A group of patients started a fundraiser for Dr. Bhupesh Prusty's research at Würzburg University, Germany. According to the organizers, all funds raised will go to the non-profit HHV6 Foundation and then be donated to Dr. Bhupesh Prusty's lab for his research.
Fundraiser here Thread here
...............................
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Norway The Kavli Trust continue supporting Øystein Fluge and Olav Mella's research team with a new allocation on 4.7 mill NOK (38 8200 GBP/500 000 USD/460 000 EUR). This will enable further experiments on energy metabolism, gene expression in purified immune cells and autoantibodies in patient's blood.
Article here (Norwegian) Thread here
UK ME Association "The ME Association to Fund Six Student Bursaries for the March 2020 CMRC Research Conference in Bristol | 31 January 2020". The conference is also Continuing Professional Development certified.
Article here Thread here
UK ME Association "New MEA Guide: ME/CFS The Ten Key Aspects of Management" by Dr Charles Shepherd. Topics include diagnosis, treatment, management and dealing with work, education and state benefits. Feedback is invited.
Article with link to the guide here Thread here
Bateman Horne Center video "Postural Biomarkers as Outcome Measures for ME/CFS", Suzanne Vernon, PhD. Duration 19 minutes.
A wearable device that senses angle from vertical has been tested with a small group of moderate and severe ME sufferers and healthy controls to learn whether it is a useful measure of symptom severity. Results expected in a few months.
Video here Thread here
Norway The Norwegian ME Association met with Prime Minister Erna Solberg this week to present their seminar on adapted teaching for pupils with ME.
Thread with summary here
Denmark The Danish ME Association has met with the Danish Health Authority this week. It seems the plan still is to treat ME as a functional disorder despite the unanimous motion from last year by the Danish Parliament to separate ME from that term.
Thread with summary here
New Zealand Herald "Local Focus: The heart-breaking experiences of mothers with ME" by Nathan Morton.
In a 7 minute video and short article, two women with ME and a field officer for CCIS: Complex Chronic Illness Support talk about the devastating effect of ME on their lives, and the difficulties getting the home care they need.
Thread with links here
Broken Battery "What is ME?"
An information film by forum member Adam pwme in an updated version. This seven minute long film gives a good introduction to ME both for lay persons and health professionals.
Thread with film here
Sweden Author and ME sufferer Karin Alvtegen raises alarm of an ongoing health scandal in Sweden with a desperate situation for ME patients.
Article here (Swedish) Thread here
...............................
Trial by Error by David Tuller - more about CBT for Irritable bowel sydrome.
My Letter to Professor Moss-Morris
In this letter David Tuller informs professor Moss-Morris of his recent articles about the licensing deal between Mahana Therapeutics and King's College London. Prof. Moss-Morris was the co-investigator of Assessing Cognitive Behavioural Therapy for IBS (ACTIB trial) which Mahana Therapeutics is based on, and also has stock options in the company as well as having received consultant fee from them.
Article here Thread here
My Letter to One of Mahana's Gastroenterology Advisors
A letter to Dr. Heyman, one of sixteen gastroenterology and psychology advisors listed on Mahana Therapeutics website. Tuller asks whether he believes the company's claims about the ACTIB trial are accurate.
Article here Thread here
.......................................
Biomedical research
Nature - Scientific Reports
"Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in ME/CFS" by Elisa Oltra et al.
Samples from the UK ME Biobank severe ME patients and healthy controls were analysed. The differences found may be useful for developing a diagnostic test, but further larger studies are needed.
Paper here Thread here
Preprint (not yet peer reviewed)
"Cell-Based Blood Biomarkers for ME/CFS" by Missailidis, Fisher et al.
The authors found that three different tests on lymphocytes and lymphoblasts could be biomarkers with good sensitivity but modest specificity. A combination of all three gave much better sensitivity and specificity, but needs confirming with more test samples. The authors conclude: 'This protocol provides a promising biomarker that could assist in more rapid and accurate diagnosis of ME/CFS.'
Preprint here Thread here
International Journal of Sport, Exercise and Health Research
"Potential benefits of a ketogenic diet to improve response and recovery from physical exertion in people with ME/CFS: A feasibility study" by Cossington et al.
Three patients and three healthy controls were given an submaximal exercise test before and after following a ketogenic diet for a week. Some differences were found suggesting metabolic abnormalities in ME/CFS. The authors conclude that a larger study is feasible and warranted.
Paper here Thread here
............................
Other research
BMC psychology
"Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified" by Geraghty and Scott.
Keith Geraghty and Michael J Scott, a clinical psychologist, provide a critical review of the expansion of the Improving Access to Psychological Therapy (IAPT) program to treat patients with medically unexplained symptoms (MUS). The authors argue that the MUS treatment model has an unproven treatment rationale, that it is derived from theory and research in ME/CFS that is highly unpopular and that “the IAPT model of MUS may put CBT therapist and patient on a collision course.” They conclude that “psychotherapy should not become a default when patients’ physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part.”
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade” by Friedberg.
Fred Friedberg, journal editor of Fatigue Biomedicine, Health & Behavior and president of the IACFS/ME looks back at the progress being made over the last decade. Although he concludes that the scientific field of ME/CFS remains small and underdeveloped, Friedberg highlights some important milestones including government-funded reports recognizing the seriousness of ME/CFS and new initiatives for biomedical research sponsored by the NIH.
Article here Thread here
Journal of Advanced Nursing
“Associations of occupational stress, workplace violence and organizational support on chronic fatigue symptoms among nurses” by Li et al.
This Chinese study reports a high CFS prevalence of 6.76% among 1080 nurses. CFS was diagnosed by doctors according to the Fukuda criteria. Higher degrees of overcommitment and workplace violence were identified as significant risk factors associated with CFS. In addition, organizational support was shown as a protective factor in predicting CFS.
Article here Thread here
DePaul researchers unmask misunderstood chronic illness (see last week's news)
The online magazine of the DePaul University in Chicago has written an article on the prevalence study on ME/CFS in children and adolescents, performed by Leonard Jason and colleagues. "The disorder is debilitating", Jason says, "and most youth and even adults who are suffering don’t know they have it or are not taken seriously."
Article here Thread here
Simon McGrath has written a blog about the study explaining its methodology and key findings. McGrath concludes that "Despite the problems of the low response rate, this NIH funded research uses a strong design and is the best study yet on prevalence in young people."
Article here Thread here
............................
Advocacy
#MEAction UK "Take Me Seriously" action targets the UK National Institute for Health and Care Excellence (NICE) ME/CFS treatment guidelines which still include the potentially harmful treatments GET and CBT. #MEAction UK is collecting comments & signatures until February 14. These will be printed on a card and sent to NICE.
Details here Thread here
USA (Florida) Solve ME is asking Florida residents to contact their senators and congress representatives. We need them to sign on to a Florida delegation letter that asks NIH for more funding for ME/CFS research. Deadline Feb. 12.
Details here Thread here
USA Solve ME has announced more details for their 2020 ME/CFS Advocacy Week planned for April 19-26. Participants who want to attend in-person events in Washington, DC, or Bethesda, MA (NIH), should register in advance. Travel stipends of up to $500 are available, register here
Details here Thread here
Global #MEAction is planning Millions Missing events for the week of May 9-17, 2020. To get updates subscribe to email from #MEAction.
Subscribe here Thread here
............................
Fundraising
Germany
A group of patients started a fundraiser for Dr. Bhupesh Prusty's research at Würzburg University, Germany. According to the organizers, all funds raised will go to the non-profit HHV6 Foundation and then be donated to Dr. Bhupesh Prusty's lab for his research.
Fundraiser here Thread here
...............................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 10th February 2020
News
MEA - "Corona virus infection and ME/CFS" by Dr Charles Shepherd
Dr Shepherd has written an article that explains the current low chance of anyone with ME in the UK catching this virus at present, but that this could quickly change. He emphasises avoiding crowded places where possible, and frequent thorough hand washing. The article will be kept updated. Prof Jonathan Edwards has added advice including avoiding touching your face, wearing gloves when you go out, and preparing in case you need to self isolate for a few weeks.
Article here Thread here
World Health Organization drops "Benign" from "Benign myalgic encephalomyelitis"
For what will be the final update for ICD-10, the WHO has retired the "Benign" prefix from "Benign myalgic encephalomyelitis." The term now lists as "Myalgic encephalomyelitis" in the classification's latest release, Version: 2019 here.
The proposal was submitted and approved in 2016. This decision sets a precedent for the national modifications of ICD-10 and also for ICD-11. Advocate, Suzy Chapman, has submitted a new proposal for the retirement of "Benign" for ICD-11.
Thread here
Cochrane review 'Exercise therapy for chronic fatigue syndrome'
The published note from the editorial team at Cochrane Editorial and Methods Department, 'A statement from the Editor in Chief about this review and its planned update' has been linked from the latest version of the review.
Link here
Hilda Bastian has been appointed to lead an Independent Advisory Group for the full update of the review. 'This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.'
Announcement here Thread here
Europe
ME Action aritcle: Evelien van Den Brink announces that the European Committee on Petitions is following up on her petition by preparing a resolution on ME. According to Evelien, this will be the first-ever resolution on ME in the European Union (EU) and if adopted, it could mean a great leap forward towards the goal of attaining funding for biomedical research on ME. In addition, Belgian member of the EU parliament Pascal Arimont has agreed to become a champion for ME.
Article here Thread here
.......................
Trial by Error by David Tuller
Some Thoughts on IBS, CFS, MUS, PACE, ACTIB and IAPT (Whew!)
A clarification of why David Tuller has spent quite some time lately on subjects other than ME/CFS. Some names and logical fallacies from the psychosomatic approach to ME are repeating themselves under the umbrella term MUS (Medically Unexplained Symptoms). Currently Tuller is looking in particular into the ACTIB study for IBS.
Article here Thread here
[Edit 23rd February: David Tuller has deleted this article as there were some problems with it]
My Follow-Up Letter to Professor Rona Moss-Morris
Letter here
My Letter to Two More Mahana GI Advisors
Letter here
My Letter to Mahana's CEO and CO-founder
Letter here
......................
Other news, articles, podcast...
Sweden Opinion piece about ME by MD Björn Bragée of Bragée center. He writes about the situation for ME patients in Sweden and says there is hope and help that can be given while we wait for more research results.
Opinion piece here (in Swedish) Thread here
Denmark Article from the journal of the Danish Union of Journalists about how the small, local newspaper Esbjerg through investigative journalism managed to raise ME up on the national agenda.
Article here (in Danish) Thread here
USA - Naviaux Lab newsletter "Breakthroughs in the Cause and Treatment of Autism and Chronic Fatigue Syndrome"
Includes a short section headed 'ME/CFS—Triggers and Networks that Connect the Metabolome and Exposome' which describes Dr Naviaux ideas about causes, his plans for 2020 research, and collaboration with Dr. Bhupesh Prusty 'we are hot on the trail of both the identity and the biological control of the activity in ME/CFS blood that causes fatigue.'
Newsletter here Thread here
Chicago Tribune "Study finds many youth living with undiagnosed chronic fatigue syndrome - and black and Latino children are twice as likely to suffer"
Article about the recent study from DePaul University, which screened more than 10,000 children in Chicago for CFS. Interview with researcher Leonard Jason and two families with young ME sufferers.
Article here Thread here
Shape Magazine Chronic Fatigue Syndrome Is More Than Just Being Really Tired All the Time
Quite good article explaining some of the basics about ME. Interviews with Vicky Whittemore from NIH and MD Raphael Kellmann.
Article here Thread here
......................
Biomedical research and commentary
Clinical Neurophysiology Practice
"Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: a quantitative, controlled study using Doppler echography" by van Campen et al.
439 ME/CFS patients and 44 healthy controls were tested. 90% of the ME/CFS patients showed an abnormal cerebral flow reduction during orthostatic stress testing. Reduced blood flow correlated with symptoms of orthostatic intolerance.
Paper here Thread here
Brain, Behaviour & Immunity - Health
"Research article IgG stimulated β2 adrenergic receptor activation is attenuated in patients with ME/CFS" by Hartwig, Scheibenbogen et al.
In this small in vitro study the authors found that β2 AdR activation by IgG is attenuated in ME/CFS patients, and evidence that IgG from ME/CFS patients differentially modulates β2 AdR ligand signaling.
Article here Thread here
Diagnostics
Editorial for a Special Issue of the MDPI journal Diagnostics: "Biomedical Insights that Inform the Diagnosis of ME/CFS" by Lidbury and Fisher.
The authors state that ME/CFS is now known to be a biomedical condition, not amenable to psychological treatments. 'This book is intended as a landmark volume to mark this shift in thinking and to consolidate recent fundamental discoveries and biomedical insights as pathways towards tangible diagnostics, and eventual ME/CFS treatments.' The editorial outlines the articles in the special edition of the journal, some based on talks given at the Australian ME/CFS conference in 2019.
Thread with link here
Journal of Clinical Investigation
Commentary: "Can the light of immunometabolism cut through “brain fog”?" by Mady Hornig.
Hornig discusses the findings of the study by Mandarano et al in December 2019, 'ME/CFS patients exhibit altered T cell metabolism and cytokine associations'.
'...unique mechanisms of disrupted immunometabolism may underlie the complex neuroimmune dysfunction of ME/CFS.'
Commentary here Thread here
International Journal of Molecular Sciences
"An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients" by Missailidis, Fisher et al.
(Note - preprint already listed in September 2019 News, paper now published).
Immortalized lymphoblasts from 51 ME patients and a matched control group were studied using several methods including Seahorse.
The results suggest a model in which a Complex V defect in mitochondria is compensated by upregulation of other processes which enables normal ATP synthesis in resting cells, but leaves them unable to respond adequately to increases in energy demand.
Paper here Thread here
Autoimmunity Reviews (Journal pre-proof version)
"A potential antigenic mimicry between viral and human proteins linking
ME/CFS with autoimmunity: The case of HPV immunization" by Sepúlveda et al.
A hypothesis article based on bioinformatic analysis of viral and human proteins and speculation about possible antigenic mimicry and its consequences.
Article here Thread here
........................
Other research
Scandinavian Journal of Public Health
“Letter to the Editor: A misleading CFS prevalence estimate in DanFunD” by Tack M.
Forum member Michiel Tack has written a commentary on a Danish study by the research team of Per Fink. The study had reported a prevalence rate for CFS of 8.6%, much higher than previous estimates. Tack argues that the authors did not use diagnostic criteria for CFS and that their prevalence estimate included people with fatigue symptoms due to more banal causes such as renovating a house or having a first baby.
Article here Thread here
.........................
Advocacy, action, employment
Scotland The Scottish Health Council is conducting a survey of adults living with ME in Scotland on experiences of health and social care support with ME.
Survey here Thread here
Norway The Norwegian ME Association is hiring for two temporary positions as information co-worker and project co-worker
More information here (Norwegian) Thread here
UK Anna Redshaw blogs about how she raises ME awareness in her community with a yearly "Blue Sunday" tea party.
Blog here Thread here
Germany
MillionsMissing Germany has announced that the following cities will be participating in Millions Missing 2020: Aachen, Erlangen, Freiburg, Gütersloh, Halle, Münster and Ravensburg. The volunteers in these cities would be happy to receive shoes and messages.
Article here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
News
MEA - "Corona virus infection and ME/CFS" by Dr Charles Shepherd
Dr Shepherd has written an article that explains the current low chance of anyone with ME in the UK catching this virus at present, but that this could quickly change. He emphasises avoiding crowded places where possible, and frequent thorough hand washing. The article will be kept updated. Prof Jonathan Edwards has added advice including avoiding touching your face, wearing gloves when you go out, and preparing in case you need to self isolate for a few weeks.
Article here Thread here
World Health Organization drops "Benign" from "Benign myalgic encephalomyelitis"
For what will be the final update for ICD-10, the WHO has retired the "Benign" prefix from "Benign myalgic encephalomyelitis." The term now lists as "Myalgic encephalomyelitis" in the classification's latest release, Version: 2019 here.
The proposal was submitted and approved in 2016. This decision sets a precedent for the national modifications of ICD-10 and also for ICD-11. Advocate, Suzy Chapman, has submitted a new proposal for the retirement of "Benign" for ICD-11.
Thread here
Cochrane review 'Exercise therapy for chronic fatigue syndrome'
The published note from the editorial team at Cochrane Editorial and Methods Department, 'A statement from the Editor in Chief about this review and its planned update' has been linked from the latest version of the review.
Link here
Hilda Bastian has been appointed to lead an Independent Advisory Group for the full update of the review. 'This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.'
Announcement here Thread here
Europe
ME Action aritcle: Evelien van Den Brink announces that the European Committee on Petitions is following up on her petition by preparing a resolution on ME. According to Evelien, this will be the first-ever resolution on ME in the European Union (EU) and if adopted, it could mean a great leap forward towards the goal of attaining funding for biomedical research on ME. In addition, Belgian member of the EU parliament Pascal Arimont has agreed to become a champion for ME.
Article here Thread here
.......................
Trial by Error by David Tuller
Some Thoughts on IBS, CFS, MUS, PACE, ACTIB and IAPT (Whew!)
A clarification of why David Tuller has spent quite some time lately on subjects other than ME/CFS. Some names and logical fallacies from the psychosomatic approach to ME are repeating themselves under the umbrella term MUS (Medically Unexplained Symptoms). Currently Tuller is looking in particular into the ACTIB study for IBS.
Article here Thread here
[Edit 23rd February: David Tuller has deleted this article as there were some problems with it]
My Follow-Up Letter to Professor Rona Moss-Morris
Letter here
My Letter to Two More Mahana GI Advisors
Letter here
My Letter to Mahana's CEO and CO-founder
Letter here
......................
Other news, articles, podcast...
Sweden Opinion piece about ME by MD Björn Bragée of Bragée center. He writes about the situation for ME patients in Sweden and says there is hope and help that can be given while we wait for more research results.
Opinion piece here (in Swedish) Thread here
Denmark Article from the journal of the Danish Union of Journalists about how the small, local newspaper Esbjerg through investigative journalism managed to raise ME up on the national agenda.
Article here (in Danish) Thread here
USA - Naviaux Lab newsletter "Breakthroughs in the Cause and Treatment of Autism and Chronic Fatigue Syndrome"
Includes a short section headed 'ME/CFS—Triggers and Networks that Connect the Metabolome and Exposome' which describes Dr Naviaux ideas about causes, his plans for 2020 research, and collaboration with Dr. Bhupesh Prusty 'we are hot on the trail of both the identity and the biological control of the activity in ME/CFS blood that causes fatigue.'
Newsletter here Thread here
Chicago Tribune "Study finds many youth living with undiagnosed chronic fatigue syndrome - and black and Latino children are twice as likely to suffer"
Article about the recent study from DePaul University, which screened more than 10,000 children in Chicago for CFS. Interview with researcher Leonard Jason and two families with young ME sufferers.
Article here Thread here
Shape Magazine Chronic Fatigue Syndrome Is More Than Just Being Really Tired All the Time
Quite good article explaining some of the basics about ME. Interviews with Vicky Whittemore from NIH and MD Raphael Kellmann.
Article here Thread here
......................
Biomedical research and commentary
Clinical Neurophysiology Practice
"Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: a quantitative, controlled study using Doppler echography" by van Campen et al.
439 ME/CFS patients and 44 healthy controls were tested. 90% of the ME/CFS patients showed an abnormal cerebral flow reduction during orthostatic stress testing. Reduced blood flow correlated with symptoms of orthostatic intolerance.
Paper here Thread here
Brain, Behaviour & Immunity - Health
"Research article IgG stimulated β2 adrenergic receptor activation is attenuated in patients with ME/CFS" by Hartwig, Scheibenbogen et al.
In this small in vitro study the authors found that β2 AdR activation by IgG is attenuated in ME/CFS patients, and evidence that IgG from ME/CFS patients differentially modulates β2 AdR ligand signaling.
Article here Thread here
Diagnostics
Editorial for a Special Issue of the MDPI journal Diagnostics: "Biomedical Insights that Inform the Diagnosis of ME/CFS" by Lidbury and Fisher.
The authors state that ME/CFS is now known to be a biomedical condition, not amenable to psychological treatments. 'This book is intended as a landmark volume to mark this shift in thinking and to consolidate recent fundamental discoveries and biomedical insights as pathways towards tangible diagnostics, and eventual ME/CFS treatments.' The editorial outlines the articles in the special edition of the journal, some based on talks given at the Australian ME/CFS conference in 2019.
Thread with link here
Journal of Clinical Investigation
Commentary: "Can the light of immunometabolism cut through “brain fog”?" by Mady Hornig.
Hornig discusses the findings of the study by Mandarano et al in December 2019, 'ME/CFS patients exhibit altered T cell metabolism and cytokine associations'.
'...unique mechanisms of disrupted immunometabolism may underlie the complex neuroimmune dysfunction of ME/CFS.'
Commentary here Thread here
International Journal of Molecular Sciences
"An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients" by Missailidis, Fisher et al.
(Note - preprint already listed in September 2019 News, paper now published).
Immortalized lymphoblasts from 51 ME patients and a matched control group were studied using several methods including Seahorse.
The results suggest a model in which a Complex V defect in mitochondria is compensated by upregulation of other processes which enables normal ATP synthesis in resting cells, but leaves them unable to respond adequately to increases in energy demand.
Paper here Thread here
Autoimmunity Reviews (Journal pre-proof version)
"A potential antigenic mimicry between viral and human proteins linking
ME/CFS with autoimmunity: The case of HPV immunization" by Sepúlveda et al.
A hypothesis article based on bioinformatic analysis of viral and human proteins and speculation about possible antigenic mimicry and its consequences.
Article here Thread here
........................
Other research
Scandinavian Journal of Public Health
“Letter to the Editor: A misleading CFS prevalence estimate in DanFunD” by Tack M.
Forum member Michiel Tack has written a commentary on a Danish study by the research team of Per Fink. The study had reported a prevalence rate for CFS of 8.6%, much higher than previous estimates. Tack argues that the authors did not use diagnostic criteria for CFS and that their prevalence estimate included people with fatigue symptoms due to more banal causes such as renovating a house or having a first baby.
Article here Thread here
.........................
Advocacy, action, employment
Scotland The Scottish Health Council is conducting a survey of adults living with ME in Scotland on experiences of health and social care support with ME.
Survey here Thread here
Norway The Norwegian ME Association is hiring for two temporary positions as information co-worker and project co-worker
More information here (Norwegian) Thread here
UK Anna Redshaw blogs about how she raises ME awareness in her community with a yearly "Blue Sunday" tea party.
Blog here Thread here
Germany
MillionsMissing Germany has announced that the following cities will be participating in Millions Missing 2020: Aachen, Erlangen, Freiburg, Gütersloh, Halle, Münster and Ravensburg. The volunteers in these cities would be happy to receive shoes and messages.
Article here Thread here
........................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 17th February 2020
News
Germany MillionsMissing Germany opened a Kudoboard to say thank you to the green party for the questions they put to the government and to call for further action. On 20 February, representatives of MillionsMissing Germany met the health policy spokeswoman of the green party, MP Mrs. Klein-Schmeink in the German Bundestag to hand over the Kudoboard. 150 patients with ME in Germany had told their stories.
Announcement here Thread here
UK The West of England Academic Health Science Network is teaming up with Bath Centre for Fatigue Services (BCFS) for a project called “Replenish ME”. The pilot project will be using KiActiv® Health technology to objectively track daily physical activities so that patients may develop a greater understanding of how their day-to-day activities impact on their health and levels of energy. Replenish-ME is one of two projects being piloted under the theme of ‘Keeping Healthy at Home’ which forms part of the Future Challenges programme.
Announcement here Thread here
...........................
Trial by Error by David Tuller
An Australian Radio Interview with Melbourne's Dr. Mark Guthridge
A transcription of an interview with Dr. Mark Guthridge about ME from January on Australian Broadcasting Corporation.
Transcription here Thread here
My Follow-up Letter to Mahana Therapeutics' CEO
Letter here Thread here
...........................
Other news, articles, videos, podcast...
Sweden Opinion piece by Helmfrid and Eriksson from the Swedish ME Association (RME) in the Journal for the Swedish Medical Association. They argue that knowledge gaps when it comes to ME/CFS is no excuse for not trying to help the patients.
Opinion piece here (in Swedish) English translation here Thread here
Norway Articles about ME patients deteriorating after having been pushed into graded exercise therapy and cognitive behaviour therapy by the Labour and Welfare Administration.
Thread with summary and links here and here
UK Quadram Institute "Event introduces the RESTORE-ME trial".
Professor Simon Carding (Norwich Medical School) and others spoke at the meeting about the planned FMT (fecal microbiota transplant) trial for people with ME, which will be funded by Invest in ME Research. Videos and slides of the 4 talks are now available (total time 1h 11min).
Video and slides links here Thread here
USA #MEAction interviews Dr. Lucinda Bateman as part of their "Meet the Scientist" series.
Interview here Thread here
...........................
Biomedical research
bioRxiv preprint (not yet peer reviewed)
"Achieving symptom relief in patients with ME by targeting the neuro-immune interface and inducing disease tolerance" by Rodriguez et al.
Researchers at the Swedish Karolinska Institute did 'a randomized, placebo-controlled trial using intranasal mechanical stimulation (INMEST) targeting the vagus nuclei, and higher centers in the brain of ME-patients and induce a sustainable, ~30% reduction in overall symptom scores after eight weeks of treatment.' They hypothesise that 'ME is a condition caused by a failure of inducing disease tolerance upon infection and persistent immune activation.'
Paper here Thread here
E Cronicon
Review article: "A Critical Review to Investigate Chronic Fatigue Syndrome as Sleep Disorder" by Gupta, et al.
The revieweres found no evidence that CFS is a sleep disorder, but say there may be some comorbidity and symptom overlaps.
Article here Thread here
North West University
Masters Degree Thesis: "Carnitine conjugation profiling in a selected cohort of patients with chronic fatigue syndrome" by L. Du Plessis.
L-carnitine plays an important role in energy metabolism. This study found no significant difference between carnitine profiles in CFS patients and controls, though one statistical test showed some significance for acylcarnitines which the author suggests is worth further investigation.
Thesis here Thread here
...........................
Other research
Healthcare, an open-access journal by MDPI, is soliciting submissions for a special issue themed “ME/CFS - The Severely & Very Severely Affected.” Guest editors are Kenneth Friedman, Lucinda Bateman, and Kenny De Meirleir. The deadline for manuscript submissions is 31 December 2020.
Announcement here Thread here
Behavioural and Cognitive Psychotherapy
“Assessing Functioning in adolescents with Chronic Fatigue Syndrome: Psychometric properties and Factor Structure of the School and Social Adjustment Scale and the Physical Functioning Subscale of the SF36” by Loades et al.
The research team of Trudie Chalder has tested the reliability and validity of two questionnaires: School and Social Adjustment Scale (SSAS) and the SF-36 Physical Functioning Subscale in 121 adolescents with CFS. Functioning scores were only moderately correlated with other measures of disability. The data suggested that the SF-36 physical functioning subscale may be better conceptualized as 2 factors: basic physical activities, and physically demanding activities.
Article here Thread here
.............................
Coming events
Germany On 5 March there will be an expert talk on ME/CFS in the German parliament. The event was initiated by Deutsche Gesellschaft für ME/CFS and MillionsMissing Germany. Keynote speakers include Prof. Scheibenbogen from University Hospital Charité in Berlin and Prof. Uta Behrends from the Technical University Munich.
Announcement here Thread here
UK Oxford OMEGA (Oxfordshire ME Group for Action) AGM Saturday 14th March, 2 - 4pm.
Guest speaker Caroline Struthers, Senior Research Fellow at the UK EQUATOR Centre at the University of Oxford: "Ignorance to Activism, My Journey (Making sense of medical research and academia)".
Thread with details here
UK Bristol Free Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2.30 - 4pm.
Hosted by Action for ME, part of the CMRC conference. The workshop will be recorded and shared online, with the opportunity to add your comments.
Thread with details here
USA The Trans-NIH ME/CFS Working Group has scheduled their next telebriefing for Tuesday, March 17, at 11 AM EDT (8 AM PDT, 3 PM GMT, 2 AM AEDT). Leonard Jason, Ph.D., director of the Center for Community Research at DePaul University, will be the guest speaker.
NIH events here Thread here
...................................
Action
UK Contact your MP to encourage them to attend the next meeting of the All Party Parliamentary Group on ME. The focus will be presentations from scientists on biomedical research. 1pm Tuesday 3rd March.
Thread here
..........................
S4ME social media: Facebook, Twitter and You Tube
News
Germany MillionsMissing Germany opened a Kudoboard to say thank you to the green party for the questions they put to the government and to call for further action. On 20 February, representatives of MillionsMissing Germany met the health policy spokeswoman of the green party, MP Mrs. Klein-Schmeink in the German Bundestag to hand over the Kudoboard. 150 patients with ME in Germany had told their stories.
Announcement here Thread here
UK The West of England Academic Health Science Network is teaming up with Bath Centre for Fatigue Services (BCFS) for a project called “Replenish ME”. The pilot project will be using KiActiv® Health technology to objectively track daily physical activities so that patients may develop a greater understanding of how their day-to-day activities impact on their health and levels of energy. Replenish-ME is one of two projects being piloted under the theme of ‘Keeping Healthy at Home’ which forms part of the Future Challenges programme.
Announcement here Thread here
...........................
Trial by Error by David Tuller
An Australian Radio Interview with Melbourne's Dr. Mark Guthridge
A transcription of an interview with Dr. Mark Guthridge about ME from January on Australian Broadcasting Corporation.
Transcription here Thread here
My Follow-up Letter to Mahana Therapeutics' CEO
Letter here Thread here
...........................
Other news, articles, videos, podcast...
Sweden Opinion piece by Helmfrid and Eriksson from the Swedish ME Association (RME) in the Journal for the Swedish Medical Association. They argue that knowledge gaps when it comes to ME/CFS is no excuse for not trying to help the patients.
Opinion piece here (in Swedish) English translation here Thread here
Norway Articles about ME patients deteriorating after having been pushed into graded exercise therapy and cognitive behaviour therapy by the Labour and Welfare Administration.
Thread with summary and links here and here
UK Quadram Institute "Event introduces the RESTORE-ME trial".
Professor Simon Carding (Norwich Medical School) and others spoke at the meeting about the planned FMT (fecal microbiota transplant) trial for people with ME, which will be funded by Invest in ME Research. Videos and slides of the 4 talks are now available (total time 1h 11min).
Video and slides links here Thread here
USA #MEAction interviews Dr. Lucinda Bateman as part of their "Meet the Scientist" series.
Interview here Thread here
...........................
Biomedical research
bioRxiv preprint (not yet peer reviewed)
"Achieving symptom relief in patients with ME by targeting the neuro-immune interface and inducing disease tolerance" by Rodriguez et al.
Researchers at the Swedish Karolinska Institute did 'a randomized, placebo-controlled trial using intranasal mechanical stimulation (INMEST) targeting the vagus nuclei, and higher centers in the brain of ME-patients and induce a sustainable, ~30% reduction in overall symptom scores after eight weeks of treatment.' They hypothesise that 'ME is a condition caused by a failure of inducing disease tolerance upon infection and persistent immune activation.'
Paper here Thread here
E Cronicon
Review article: "A Critical Review to Investigate Chronic Fatigue Syndrome as Sleep Disorder" by Gupta, et al.
The revieweres found no evidence that CFS is a sleep disorder, but say there may be some comorbidity and symptom overlaps.
Article here Thread here
North West University
Masters Degree Thesis: "Carnitine conjugation profiling in a selected cohort of patients with chronic fatigue syndrome" by L. Du Plessis.
L-carnitine plays an important role in energy metabolism. This study found no significant difference between carnitine profiles in CFS patients and controls, though one statistical test showed some significance for acylcarnitines which the author suggests is worth further investigation.
Thesis here Thread here
...........................
Other research
Healthcare, an open-access journal by MDPI, is soliciting submissions for a special issue themed “ME/CFS - The Severely & Very Severely Affected.” Guest editors are Kenneth Friedman, Lucinda Bateman, and Kenny De Meirleir. The deadline for manuscript submissions is 31 December 2020.
Announcement here Thread here
Behavioural and Cognitive Psychotherapy
“Assessing Functioning in adolescents with Chronic Fatigue Syndrome: Psychometric properties and Factor Structure of the School and Social Adjustment Scale and the Physical Functioning Subscale of the SF36” by Loades et al.
The research team of Trudie Chalder has tested the reliability and validity of two questionnaires: School and Social Adjustment Scale (SSAS) and the SF-36 Physical Functioning Subscale in 121 adolescents with CFS. Functioning scores were only moderately correlated with other measures of disability. The data suggested that the SF-36 physical functioning subscale may be better conceptualized as 2 factors: basic physical activities, and physically demanding activities.
Article here Thread here
.............................
Coming events
Germany On 5 March there will be an expert talk on ME/CFS in the German parliament. The event was initiated by Deutsche Gesellschaft für ME/CFS and MillionsMissing Germany. Keynote speakers include Prof. Scheibenbogen from University Hospital Charité in Berlin and Prof. Uta Behrends from the Technical University Munich.
Announcement here Thread here
UK Oxford OMEGA (Oxfordshire ME Group for Action) AGM Saturday 14th March, 2 - 4pm.
Guest speaker Caroline Struthers, Senior Research Fellow at the UK EQUATOR Centre at the University of Oxford: "Ignorance to Activism, My Journey (Making sense of medical research and academia)".
Thread with details here
UK Bristol Free Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2.30 - 4pm.
Hosted by Action for ME, part of the CMRC conference. The workshop will be recorded and shared online, with the opportunity to add your comments.
Thread with details here
USA The Trans-NIH ME/CFS Working Group has scheduled their next telebriefing for Tuesday, March 17, at 11 AM EDT (8 AM PDT, 3 PM GMT, 2 AM AEDT). Leonard Jason, Ph.D., director of the Center for Community Research at DePaul University, will be the guest speaker.
NIH events here Thread here
...................................
Action
UK Contact your MP to encourage them to attend the next meeting of the All Party Parliamentary Group on ME. The focus will be presentations from scientists on biomedical research. 1pm Tuesday 3rd March.
Thread here
..........................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 24th February 2020
News
Canada The ME/FM Society of British Columbia has received a $20,000 grant from the Vancouver Foundation to study the unmet needs of patients living with ME.
Announcement here Thread here
Norway The Norwegian ME Association is working together with the institution Røysumtunet on plans for developing a place with care for patients with severe ME.
Thread here
.........................
In the media
Italy Article about ME in the women's magazine Donna Moderna. Contains a bit about ME, the situation in Italy for ME patients and an interview with president of the Italian ME Association Giada Da Ros.
Article here (in Italian) Thread here
UK - Metro Article about ME sufferer Kate Stanforth and her awareness work about ambulatory wheelchair users.
Article here Thread here
UK Daily Mail "Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal"
Describes the experiences of three patients and quotes Dr Charles Shepherd.
Article here Thread here
Australia "I'm 18 years old and living with three conditions you can't see"
SBS Insight article with the story of Chloe (18) suffering from CFS, fibromyalgia and endometriosis. Article also has a video interview with CFS sufferer Christopher.
Article here Thread here
.....................
Other news and articles
Occupy ME - Coronavirus "A New Virus and ME" by Jennie Spotila.
Jennie writes: 'I've gathered information from several infectious disease doctors, public health sources, and an ME specialist. While I can’t offer medical advice, I do have some basic information that I think will help.'
Article here Thread here
UK - Invest in ME Research February newsletter is now available. It includes news of a Clinician's Workshop to be included in their annual conference this year, and an update on the FMT trial to be run in Norwich funded by IiMER. They have also updated their executive summary for MP's.
Newsletter here Thread here
Sweden The medical university Karolinska Institutet publishes a magazine on medical science which has an article on fatigue in different conditions. ME specialist and scientist Per Julin is among the experts who are interviewed.
Article here (in Swedish) Thread here
A life hidden "When coping is too much"
Another beautifully written blogpost from Naomi Whittingham. This time on dealing with loss and illness grief.
Article here Thread here
Trial by Error by David Tuller
Another Letter About Mahana; BerkeleyWellness on IBS Study
Article here Thread here
....................
Useful Resources
UK Physios for M.E. have a new website with excellent articles and links to resources useful for physios, patients and carers.
Website here Thread here (members only)
.......................
Research
Journal of Translational Medicine
"Systematic review and meta-analysis of the prevalence of CFS/ME" by Eun-Jin Lim et al
A study of papers published between 1980 and 2018 showed widely varying prevalence depending on the diagnostic criteria and methods used.
Paper here Thread here
Osaka University - Human Sciences
"Difficulties of living with an illness not considered a 'Disease': Focusing on the illness behavior of ME/CFS" by Nojima.
The abstract concludes that behaviours such as 'doctor shopping' are 'not undertaken for secondary gain but are due to their having no other way to receive necessary care.'
Article here Thread here
medRxiv preprint
"Beyond Bones – The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification, an observational study" by Eccles et al.
In a preprint Eccles et al. report a high prevalence of joint hypermobility syndrome in patients with ME/CFS. There was no association between current Beighton score (a measure of joint hypermobility) and baseline pain and fatigue questionnaires but small correlations were noted between historic Beighton scores and questionnaires assessing pain and other symptoms
Article here Thread here
.....................
Action
Canada The Canadian Pain Task Force is asking for input from pain patients in order to "improve how we understand, prevent and manage pain in Canada." This is an opportunity for the estimated 600,000 Canadian ME patients to provide input.
Announcement here Thread here
........................
Coming events
New Zealand Dr Vallings will give a public lecture on the latest research and management of ME. Dunedin, 13th March.
Thread here
UK - Mid-Sussex charity, ReMEmber, is holding its annual conference on May 16th. Speakers: Doctors Shepherd, Muirhead, Weir, Bansal and Worthley.
Thread with details here
Norway ME conference in Stavanger 23-24 Sept 2020. Themes: Research and experiences from clinical practice. Speakers: dr. Ron Davis, dr. Ian Lipkin, prof. Kristian Sommerfelt, MD Nigel Speight, MD Øystein Fluge, prof. Brian Hughes, MD Katarina Lien and MD Per Julin.
Thread here
...................
S4ME social media: Facebook, Twitter and You Tube
News
Canada The ME/FM Society of British Columbia has received a $20,000 grant from the Vancouver Foundation to study the unmet needs of patients living with ME.
Announcement here Thread here
Norway The Norwegian ME Association is working together with the institution Røysumtunet on plans for developing a place with care for patients with severe ME.
Thread here
.........................
In the media
Italy Article about ME in the women's magazine Donna Moderna. Contains a bit about ME, the situation in Italy for ME patients and an interview with president of the Italian ME Association Giada Da Ros.
Article here (in Italian) Thread here
UK - Metro Article about ME sufferer Kate Stanforth and her awareness work about ambulatory wheelchair users.
Article here Thread here
UK Daily Mail "Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal"
Describes the experiences of three patients and quotes Dr Charles Shepherd.
Article here Thread here
Australia "I'm 18 years old and living with three conditions you can't see"
SBS Insight article with the story of Chloe (18) suffering from CFS, fibromyalgia and endometriosis. Article also has a video interview with CFS sufferer Christopher.
Article here Thread here
.....................
Other news and articles
Occupy ME - Coronavirus "A New Virus and ME" by Jennie Spotila.
Jennie writes: 'I've gathered information from several infectious disease doctors, public health sources, and an ME specialist. While I can’t offer medical advice, I do have some basic information that I think will help.'
Article here Thread here
UK - Invest in ME Research February newsletter is now available. It includes news of a Clinician's Workshop to be included in their annual conference this year, and an update on the FMT trial to be run in Norwich funded by IiMER. They have also updated their executive summary for MP's.
Newsletter here Thread here
Sweden The medical university Karolinska Institutet publishes a magazine on medical science which has an article on fatigue in different conditions. ME specialist and scientist Per Julin is among the experts who are interviewed.
Article here (in Swedish) Thread here
A life hidden "When coping is too much"
Another beautifully written blogpost from Naomi Whittingham. This time on dealing with loss and illness grief.
Article here Thread here
Trial by Error by David Tuller
Another Letter About Mahana; BerkeleyWellness on IBS Study
Article here Thread here
....................
Useful Resources
UK Physios for M.E. have a new website with excellent articles and links to resources useful for physios, patients and carers.
Website here Thread here (members only)
.......................
Research
Journal of Translational Medicine
"Systematic review and meta-analysis of the prevalence of CFS/ME" by Eun-Jin Lim et al
A study of papers published between 1980 and 2018 showed widely varying prevalence depending on the diagnostic criteria and methods used.
Paper here Thread here
Osaka University - Human Sciences
"Difficulties of living with an illness not considered a 'Disease': Focusing on the illness behavior of ME/CFS" by Nojima.
The abstract concludes that behaviours such as 'doctor shopping' are 'not undertaken for secondary gain but are due to their having no other way to receive necessary care.'
Article here Thread here
medRxiv preprint
"Beyond Bones – The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification, an observational study" by Eccles et al.
In a preprint Eccles et al. report a high prevalence of joint hypermobility syndrome in patients with ME/CFS. There was no association between current Beighton score (a measure of joint hypermobility) and baseline pain and fatigue questionnaires but small correlations were noted between historic Beighton scores and questionnaires assessing pain and other symptoms
Article here Thread here
.....................
Action
Canada The Canadian Pain Task Force is asking for input from pain patients in order to "improve how we understand, prevent and manage pain in Canada." This is an opportunity for the estimated 600,000 Canadian ME patients to provide input.
Announcement here Thread here
........................
Coming events
New Zealand Dr Vallings will give a public lecture on the latest research and management of ME. Dunedin, 13th March.
Thread here
UK - Mid-Sussex charity, ReMEmber, is holding its annual conference on May 16th. Speakers: Doctors Shepherd, Muirhead, Weir, Bansal and Worthley.
Thread with details here
Norway ME conference in Stavanger 23-24 Sept 2020. Themes: Research and experiences from clinical practice. Speakers: dr. Ron Davis, dr. Ian Lipkin, prof. Kristian Sommerfelt, MD Nigel Speight, MD Øystein Fluge, prof. Brian Hughes, MD Katarina Lien and MD Per Julin.
Thread here
...................
S4ME social media: Facebook, Twitter and You Tube