-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Week beginning 2nd September 2019
News
Canada The Open Medicine Foundation has announced Open Medicine Foundation Canada. OMF Canada is a registered charity with the CRA and all contributions through OMF Canada are tax deductible.
Website here Thread here
USA - NIH The report from the NANDSC Working Group for ME/CFS Research is now available. The Sept. 4 presentation of that report was videocast and the recording is also available (relevant section starts at about minute 56:00).
Report (PDF) here Video here Thread here
.......................................
Trial by Error by David Tuller
Calls for Retraction of the LP study
Professors Ola D. Saugstad, Vincent Racaniello and Elisa Oltra have written their own comments to Dr. Godlee, editorial director of the BMJ, following up last week's letter signed by 55 academics criticising the BMJ for allowing one of their journals to claim LP (Lightning Process) is effective despite severe methodological faults in the study.
Letters here Thread here
Later retired Yale professor and psychiatrist Alan Gurwitt also wrote to Godlee regarding the LP study. Prof. Gurwitt was a co-author of the 2017 Pediatric Primer for ME/CFS. He says: ''I reviewed what was available on the Lightning Process. I came to the conclusion that this treatment was utter nonsense.''
Thread with letter here
More on Cochrane's New Risk of Bias Tool
David Tuller looks at how the new version of Cochrane's Risk of Bias tool makes it easier to rate poor quality trials as having a low risk of bias.
Article here Thread here
Podcast Special episode at This Week in Virology: Call me David Tuller
A new interview with David Tuller in Prof. Vincent Racaniello's podcast TWiV. They talk about what Tuller has been up to in the recent year and touch upon SMC, CDC, the LP study, MUS, the Cochrane review on GET, the infamous Reuters article by Kelland and more. "I don't know why I'm shocked at anything anymore"
Duration: 73 minutes
Podcast here Thread here
...........................................
Video, blogs, podcasts, website...
Australia ABC Radio "Nightlife" featuring Chronic Fatigue Syndrome. Good introduction for a general audience about ME explaining how it is to live with the disease and emphasising it's a biomedical condition. Also a bit about recent research and how damaging GET is as treatment approach. In studio: CEO Heidi Nicholl from Emerge Australia, Prof. Paul Fisher from La Trobe University and ME patient Fiona Cheng.
Programme here Thread here
The New Yorker "A town for people with chronic fatigue"
A "personal history" article by Mike Mariani who sets out to Incline Village, Nevada for treatment with Ampligen by Dr. Daniel Peterson. The article gives an account of the history of Ampligen research and some of the health authorities' scepticism towards CFS throughout the decades.
Article here Thread here
UK ME Association on Twitter report that Dr Charles Shepherd and Carol Monaghan, MP, met with senior representatives of the companies that assess people for disability benefits to inform them about the problems and needs of people with ME claiming benefits.
Thread with links here
Blog: ME/CFS Research Review "Launch of Canadian research network makes a big statement about ME"
Simon McGrath with more details on how the recent allocation from the Canadian government on ME research will be spent. Examples are data gathering on PEM, virus hunting and looking for genetic risk for ME/CFS.
Article here Thread here
The Harvard ME/CFS Collaboration has just launched a new website introducing their focus, projects and their intent of establishing a Center of Excellence for Chronic, Complex Diseases including ME/CFS, Post-treatment Lyme Disease and Fibromyalgia.
Website here Thread here
...............................................
Useful Resources
USA The "U.S. ME/CFS Clinician Coalition", a group of ME/CFS experts from the USA, has created a 6-page document covering the basics for diagnosis and management of ME/CFS. This document uses the diagnostic criteria from the 2015 IOM report.
Document (PDF) here Thread here
........................................................
Biomedical Research
Preprint (not peer reviewed)
''An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients'' by Missailidis et al.
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
.............................................
Other Research
Journal of Bodywork and Movement Therapies
''Assessing CFS: Self-reported physical functioning and correlations with physical testing'' by Eyskens et al.
27 females with confirmed CFS filled in physical functioning and fatigue questionnaires and did 2 physical tests: ‘Timed Loaded Standing’ (TLS), assessing trunk-arm endurance, and the ‘Stops Walking with Eyes Closed while performing a secondary Cognitive Task’ (SWECCT), measuring impaired automaticity of gait.
TLS correlated significantly with SF-36 physical functioning. None of the other associations was significant. The authors suggest TLS may be a useful monitoring tool for CFS.
Paper here Thread here
Neurasthenia
Recently, several papers have been published on the history of neurasthenia; an old diagnosis in which some researchers see a forerunner of ME/CFS. Unfortunately, we could only find the abstracts of the papers, one of which is written in Spanish. Here’s a brief overview:
''Sickness behaviour in ME/CFS'' by Martin Jonsjö
Compares 'sickness behaviour' in ME/CFS patients with those with chronic pain and healthy people. Suggests Acceptance and Commitment Therapy as treatment.
Details here Thread here
...............................................
Research recruiting participants
Australia LaTrobe University, Melbourne. Healthy volunteers are needed for a new ME/CFS study. 60 minutes, questionnaires, blood draw and optional skin biopsy.
Details here Thread here
USA Florida - Institute for Neuro-immune Medicine. Females with ME required for study ''ME/CFS: Detecting Mycotoxin Subgroup'' involving questionnaires and blood draw.
Details here Thread here
...............................................
Fundraising
Canada Action CIND is hosting a fundraiser for ME research on Saturday, Sep. 14 in Stouffville, Ontario. #Run4ME includes a 5K/1K run/walk as well as a silent auction.
Donate here Thread here
...............................................
Coming events
USA Sept 10th Georgia Nurses Association - Free Webinar: 'ME/CFS & the Pediatric Patient' with Professor Robert Pendergrast. CME and CNE credits for learning about diagnosis and management. No information available on what sort of advice will be given.
Information here Thread here
Sweden Sept. 19th & Oct. 2nd Two seminars for doctors about ME and chronic fatigue hosted by the journal of the Swedish medical association. Lecturers on ME are senior doctor Per Julin and professor Jonas Bergquist.
Thread with link to programme here
UK Oct. 19th David Tuller - Discusses ME/CFS and the UK Medical Establishment
David Tuller gives a talk about "his latest activities, findings and thought about the UK medical establishment, how ME/CFS and MUPS patients are treated/mistreated and explore the reasons why".
The event is organised by Omega (Oxfordshire M.E. Group for Action) and will take place in Oxford Oct. 19th from 14.00 - 16.00.
More details here Thread here
...............................................
S4ME social media: Facebook, Twitter and You Tube
News
Canada The Open Medicine Foundation has announced Open Medicine Foundation Canada. OMF Canada is a registered charity with the CRA and all contributions through OMF Canada are tax deductible.
Website here Thread here
USA - NIH The report from the NANDSC Working Group for ME/CFS Research is now available. The Sept. 4 presentation of that report was videocast and the recording is also available (relevant section starts at about minute 56:00).
Report (PDF) here Video here Thread here
.......................................
Trial by Error by David Tuller
Calls for Retraction of the LP study
Professors Ola D. Saugstad, Vincent Racaniello and Elisa Oltra have written their own comments to Dr. Godlee, editorial director of the BMJ, following up last week's letter signed by 55 academics criticising the BMJ for allowing one of their journals to claim LP (Lightning Process) is effective despite severe methodological faults in the study.
Letters here Thread here
Later retired Yale professor and psychiatrist Alan Gurwitt also wrote to Godlee regarding the LP study. Prof. Gurwitt was a co-author of the 2017 Pediatric Primer for ME/CFS. He says: ''I reviewed what was available on the Lightning Process. I came to the conclusion that this treatment was utter nonsense.''
Thread with letter here
More on Cochrane's New Risk of Bias Tool
David Tuller looks at how the new version of Cochrane's Risk of Bias tool makes it easier to rate poor quality trials as having a low risk of bias.
Article here Thread here
Podcast Special episode at This Week in Virology: Call me David Tuller
A new interview with David Tuller in Prof. Vincent Racaniello's podcast TWiV. They talk about what Tuller has been up to in the recent year and touch upon SMC, CDC, the LP study, MUS, the Cochrane review on GET, the infamous Reuters article by Kelland and more. "I don't know why I'm shocked at anything anymore"
Duration: 73 minutes
Podcast here Thread here
...........................................
Video, blogs, podcasts, website...
Australia ABC Radio "Nightlife" featuring Chronic Fatigue Syndrome. Good introduction for a general audience about ME explaining how it is to live with the disease and emphasising it's a biomedical condition. Also a bit about recent research and how damaging GET is as treatment approach. In studio: CEO Heidi Nicholl from Emerge Australia, Prof. Paul Fisher from La Trobe University and ME patient Fiona Cheng.
Programme here Thread here
The New Yorker "A town for people with chronic fatigue"
A "personal history" article by Mike Mariani who sets out to Incline Village, Nevada for treatment with Ampligen by Dr. Daniel Peterson. The article gives an account of the history of Ampligen research and some of the health authorities' scepticism towards CFS throughout the decades.
Article here Thread here
UK ME Association on Twitter report that Dr Charles Shepherd and Carol Monaghan, MP, met with senior representatives of the companies that assess people for disability benefits to inform them about the problems and needs of people with ME claiming benefits.
Thread with links here
Blog: ME/CFS Research Review "Launch of Canadian research network makes a big statement about ME"
Simon McGrath with more details on how the recent allocation from the Canadian government on ME research will be spent. Examples are data gathering on PEM, virus hunting and looking for genetic risk for ME/CFS.
Article here Thread here
The Harvard ME/CFS Collaboration has just launched a new website introducing their focus, projects and their intent of establishing a Center of Excellence for Chronic, Complex Diseases including ME/CFS, Post-treatment Lyme Disease and Fibromyalgia.
Website here Thread here
...............................................
Useful Resources
USA The "U.S. ME/CFS Clinician Coalition", a group of ME/CFS experts from the USA, has created a 6-page document covering the basics for diagnosis and management of ME/CFS. This document uses the diagnostic criteria from the 2015 IOM report.
Document (PDF) here Thread here
........................................................
Biomedical Research
Preprint (not peer reviewed)
''An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients'' by Missailidis et al.
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
.............................................
Other Research
Journal of Bodywork and Movement Therapies
''Assessing CFS: Self-reported physical functioning and correlations with physical testing'' by Eyskens et al.
27 females with confirmed CFS filled in physical functioning and fatigue questionnaires and did 2 physical tests: ‘Timed Loaded Standing’ (TLS), assessing trunk-arm endurance, and the ‘Stops Walking with Eyes Closed while performing a secondary Cognitive Task’ (SWECCT), measuring impaired automaticity of gait.
TLS correlated significantly with SF-36 physical functioning. None of the other associations was significant. The authors suggest TLS may be a useful monitoring tool for CFS.
Paper here Thread here
Neurasthenia
Recently, several papers have been published on the history of neurasthenia; an old diagnosis in which some researchers see a forerunner of ME/CFS. Unfortunately, we could only find the abstracts of the papers, one of which is written in Spanish. Here’s a brief overview:
Overholser et al. (2019). Neurasthenia Modern Malady or Historical Relic?
Article here Thread here
Tripathi et al. (2019). Modern-Day Relics of Psychiatry.
Article here Thread here
Murga & Lafuente (2019). From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis.
Article here Thread here
ThesisArticle here Thread here
Tripathi et al. (2019). Modern-Day Relics of Psychiatry.
Article here Thread here
Murga & Lafuente (2019). From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis.
Article here Thread here
''Sickness behaviour in ME/CFS'' by Martin Jonsjö
Compares 'sickness behaviour' in ME/CFS patients with those with chronic pain and healthy people. Suggests Acceptance and Commitment Therapy as treatment.
Details here Thread here
...............................................
Research recruiting participants
Australia LaTrobe University, Melbourne. Healthy volunteers are needed for a new ME/CFS study. 60 minutes, questionnaires, blood draw and optional skin biopsy.
Details here Thread here
USA Florida - Institute for Neuro-immune Medicine. Females with ME required for study ''ME/CFS: Detecting Mycotoxin Subgroup'' involving questionnaires and blood draw.
Details here Thread here
...............................................
Fundraising
Canada Action CIND is hosting a fundraiser for ME research on Saturday, Sep. 14 in Stouffville, Ontario. #Run4ME includes a 5K/1K run/walk as well as a silent auction.
Donate here Thread here
...............................................
Coming events
USA Sept 10th Georgia Nurses Association - Free Webinar: 'ME/CFS & the Pediatric Patient' with Professor Robert Pendergrast. CME and CNE credits for learning about diagnosis and management. No information available on what sort of advice will be given.
Information here Thread here
Sweden Sept. 19th & Oct. 2nd Two seminars for doctors about ME and chronic fatigue hosted by the journal of the Swedish medical association. Lecturers on ME are senior doctor Per Julin and professor Jonas Bergquist.
Thread with link to programme here
UK Oct. 19th David Tuller - Discusses ME/CFS and the UK Medical Establishment
David Tuller gives a talk about "his latest activities, findings and thought about the UK medical establishment, how ME/CFS and MUPS patients are treated/mistreated and explore the reasons why".
The event is organised by Omega (Oxfordshire M.E. Group for Action) and will take place in Oxford Oct. 19th from 14.00 - 16.00.
More details here Thread here
...............................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 9th September 2019
News
The Netherlands The Dutch ME/CFS Association has published the results of a patient survey that was conducted online in 2017 and had valid results for 418 respondents. Of the patients who had followed cognitive-behavioural therapy (CBT) approximately half said the treatment had a negative effect on their health. Many said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow CBT. An English summary of the survey will be published soon.
Survey here Thread here
...................................................
Trial by Error by David Tuller
More Experts Urge Godlee to Retract Lightning Process Study
Several experts have written their own letters to Dr Godlee in addition to a recent joint letter signed by 55 academics criticising the BMJ for having published the Lightning Process study. The newest contributions are from Dr Alan Gurwitt, Prof. Marlon Maus and Prof. Jonathan Edwards.
Article with letters here Thread here
Experts Send More Tough Letters to Dr Godlee
More damning letters from Dr Steve Olson from Kaiser Permanente, Prof. Alison Bested from Nova Southeastern University, Prof. Rebecca Goldin from George Mason University, Prof. Ronald Tompkins from Harvard Medical School and Prof. Brian Hughes from National University of Ireland.
Letters here Thread here
.........................................
Media and blogs
The Faculty Lounge "Prof. Rebecca Goldin's Letter on Flawed Research Design at BMJ Archives of Disease in Childhood"
Article by Prof. Steven Lubet about the open letters scientists, physicians and academics have sent to BMJ editor Dr Fiona Godlee concerning the Lightning Process study (see above items). Prof. Goldin's letter is shared in full as "short and powerful, and an excellent example of persuasive writing that could serve as a model for lawyers and law students".
Article here Thread here
Norway "A Messiah in the Norwegian health system? Lightning Process and the Norwegian medical establishment"
Blog post by Nina E. Steinkopf about Lightning Process and its entry into Norwegian medical establishment.
Article here Thread with Google translation here
USA WCAI - The Cape, Coast and Islands NPR Station: "Thousands of Studies Begin to Paint New Picture of Chronic Fatigue Syndrome"
Radio program and article interviewing Prof. Anthony Komaroff on the latest advances in medical research into ME.
Article and radio program here Thread here
UK The Metro website has a weekly series called "You Don't Look Sick" which tells the stories of people with invisible illness and disabilities. The Sept. 8th column features a woman with ME and vestibular migraines.
Article here Thread here
Germany A radio program on the public broadcast Bayerischer Rundfunk (BR) called Wissenschaft und Technik included a 5-minute report on the dire situation of ME/CFS patients in Germany. Science journalist Yvonne Maier mentioned the problems with exercise therapy and the controversial studies on which this treatment is based. Maier used the word ‘scandal’ to describe the care of ME/CFS patients in Germany.
Broadcast here (starts at minute 3:50) Thread here
BookTrust "Canaries in the coalmine: Why Marcus Sedgwick is writing about Chronic Fatigue and illnesses we all need to understand better"
Author Marcus Sedgwick has just released the book "Snowflake, AZ"; a pre-apocalyptic story about an isolated community in USA calling themselves the Canaries and suffering from a sickness no-one understands. In the article Sedgwick tells the background for the book as he suffers from CFS/ME or Multiple Chemical Sensitivity himself and this made him seek out the community.
Article here Thread here
.....................................
Useful resources
Online training for school nurses
Northeastern University (USA) School of Nursing
''Why Can't This Child Get to Class? Learn how ME/CFS keeps youth from attending school'', with Dr Peter Rowe, pediatrician; nurse Lisa Hall, and two mothers of children with ME.
Forum member Hutan has provided a helpful review of the mostly good and some less good features of this 3.5 hour course.
Course details and signup here Thread here
German medical journal Ärzteblatt Sachsen
Dr. Carmen Scheibenbogen and colleagues have published an overview on ME/CFS. Translated into English the title reads “Chronic fatigue syndrome (CFS): Practical recommendations for diagnostics and therapy.” The article includes a section on children and adolescents with ME/CFS and has been positively received on social media.
Article here (in German) Thread here
.......................................
Biomedical Research Videos
Stanford Symposium The 3rd Annual Community Symposium was held on 7th September and live-streamed. The videos will be put on You Tube. There was news of revamping the ME/CFS center at Stanford. Research news included more evidence of 'something in the blood'. The research on red blood cell deformability has not shown a difference from healthy patients' cells but both groups showed significant heterogeneity - more experiments are planned.
Live-stream summary here Thread here
Science for ME Q&A with Dr Karl Morten, University of Oxford.
In a two part interview, Dr Morten of Oxford University tells @Andy how he became interested in researching ME, and answers forum members' questions about his recent paper on the Acumen test, his research showing 'something in the blood', and his future hopes and plans for continued research including collaborations with researchers in the UK, Spain and Poland. Part 1 - 28 minutes, Part 2 - 40 minutes.
Thread with links to videos here
ME/CFS Alert "Finding an ME/CFS Biomarker, Ronald Davis, Stanford University"
Llewellyn King interviews Prof. Ron Davis. They talk about his research, the struggle for more research funds, data collecting and the hypothesis about the metabolic trap as a possible explanation for ME and more. Duration: 25 minutes.
Interview here Thread here
........................................
Biomedical research
European Journal of Applied Physiology "Unexplained exertional intolerance associated with impaired systemic oxygen extraction" by Kathryn H Melamed, David M. Systrom et al
The researchers reviewed invasive cardiopulmonary test results of 313 patients with unexplained exertional intolerance. The paper focuses mainly on a small subset of patients: "We identified a cohort of patients whose exercise limitation is due only to systemic oxygen extraction, due to either an intrinsic abnormality of skeletal muscle mitochondrion, limb muscle microcirculatory dysregulation, or hyperventilation and left shift the oxyhemoglobin dissociation curve" They indicate that these patients had a diagnosis of ME/CFS.
Paper here Thread here
JAMA Neurology
''Scientific Advances in and Clinical Approaches to Small-Fiber Polyneuropathy - A Review'' by Oaklander and Nolano.
A common condition often undiagnosed causing chronic bilateral neuropathic pain, fatigue, and nausea. Diagnosed by skin biopsy. ''...evidence suggests that small-fiber dysfunction and denervation, especially of blood vessels, contributes to diverse symptoms, including postexertional malaise, postural orthostatic tachycardia, and functional gastrointestinal distress''.
Article here Thread here
Student thesis
'Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol' by Pelligrini.
Aggregated results from 45 participants with ME/CFS compared with healthy controls found ''essentially the same regions of the brain shown to be abnormal as the SPECT studies done of ME brains by Dr. Byron Hyde''.
Thesis here Thread here
Pharmacological Research
''ME/CFS: From Pathophysiological Insights to Novel Therapeutic Opportunities'' by Berk et al.
After a brief overview of some biomedical research most of this article looks at some treatments the authors think might be worth testing for ME/CFS, including coenzyme Q10, melatonin and curcumin. Most of the evidence they cite comes from animal studies, and studies on people with other conditions. They also discuss CBT/GET concluding they only have modest benefits for some people and GET may cause harm.
Article here Thread here
Notes on mitochondria research
Forum member Simon M. has written some helpful notes on the paper listed in last week's news by Missailidis et al (including Paul Fisher) that found a problem with Complex V in the mitochondria of people with ME.
A short guide to mitochondria and complex V here
Comments on the research here
......................................
Other research
Quality of Life Research
“Psychometric properties of the PROMIS® Fatigue Short Form 7a among adults with ME/CFS” by Yang et al.
Yang and colleagues tested a short 7-item fatigue questionnaire in a large sample of 549 ME/CFS patients recruited in the CDC’s Multi-Site Clinical Assessment study. The questionnaire showed good internal consistency. Although no floor or ceiling effects were found at the total score level, the questionnaire had trouble differentiating patients who worsened over time versus those who remained stable.
Article here Thread here
Health Care for Women International
“Recovering from CFS as an intra-active process” by Groven & Dahl-Michelsen.
The authors, from the Institute of Physiotherapy in Oslo, Norway have published an article on a woman recovering from ME/CFS through the Lightning Process. The woman explains how she improved by changing her thinking and telling herself: “I am not going back to CFS; I am going to have a life that I love.”
Not a recommendation.
Study here Thread here
......................................
Fundraising
USA A donor has offered to match up to $25,000 in donations to Cornell University's Center for Enervating NeuroImmune Disease to support their research on immune dysregulation in ME/CFS. For a description of this research watch Dr. Maureen Hanson's presentation from the OMF Community Symposium.
To donate go here Thread here
......................................
Coming events
USA The CDC ME/CFS Stakeholder Engagement and Communication group will hold a conference call on Sept 16, 2019, from 3:00 to 4:00 pm EDT (noon PDT, 8:00 pm BST, 5:00 am AEST). Participants can call in or join the meeting using the webinar format.
CDC webpage here Thread here
Europe The petition that asks the European Union for increased funding for biomedical research into ME will be discussed at the meeting of the Committee on Petitions on October 3rd. It will be live streamed.
Thread with details here
..........................................
In memory
Dr Peter Behan
''Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron''.
The UK MEA has published an article by Dr Charles Shepherd with his memories of neurologist Dr Behan and his care for patients. ''Unlike most of his neurology colleagues he had no doubt that M.E. was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.''
Dr Behan passed away on 31st August, aged 84.
MEA article here Thread here (members only)
.........................................
S4ME social media: Facebook, Twitter and You Tube
Edited to correct spelling mistake.
News
The Netherlands The Dutch ME/CFS Association has published the results of a patient survey that was conducted online in 2017 and had valid results for 418 respondents. Of the patients who had followed cognitive-behavioural therapy (CBT) approximately half said the treatment had a negative effect on their health. Many said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow CBT. An English summary of the survey will be published soon.
Survey here Thread here
...................................................
Trial by Error by David Tuller
More Experts Urge Godlee to Retract Lightning Process Study
Several experts have written their own letters to Dr Godlee in addition to a recent joint letter signed by 55 academics criticising the BMJ for having published the Lightning Process study. The newest contributions are from Dr Alan Gurwitt, Prof. Marlon Maus and Prof. Jonathan Edwards.
Article with letters here Thread here
Experts Send More Tough Letters to Dr Godlee
More damning letters from Dr Steve Olson from Kaiser Permanente, Prof. Alison Bested from Nova Southeastern University, Prof. Rebecca Goldin from George Mason University, Prof. Ronald Tompkins from Harvard Medical School and Prof. Brian Hughes from National University of Ireland.
Letters here Thread here
.........................................
Media and blogs
The Faculty Lounge "Prof. Rebecca Goldin's Letter on Flawed Research Design at BMJ Archives of Disease in Childhood"
Article by Prof. Steven Lubet about the open letters scientists, physicians and academics have sent to BMJ editor Dr Fiona Godlee concerning the Lightning Process study (see above items). Prof. Goldin's letter is shared in full as "short and powerful, and an excellent example of persuasive writing that could serve as a model for lawyers and law students".
Article here Thread here
Norway "A Messiah in the Norwegian health system? Lightning Process and the Norwegian medical establishment"
Blog post by Nina E. Steinkopf about Lightning Process and its entry into Norwegian medical establishment.
Article here Thread with Google translation here
USA WCAI - The Cape, Coast and Islands NPR Station: "Thousands of Studies Begin to Paint New Picture of Chronic Fatigue Syndrome"
Radio program and article interviewing Prof. Anthony Komaroff on the latest advances in medical research into ME.
Article and radio program here Thread here
UK The Metro website has a weekly series called "You Don't Look Sick" which tells the stories of people with invisible illness and disabilities. The Sept. 8th column features a woman with ME and vestibular migraines.
Article here Thread here
Germany A radio program on the public broadcast Bayerischer Rundfunk (BR) called Wissenschaft und Technik included a 5-minute report on the dire situation of ME/CFS patients in Germany. Science journalist Yvonne Maier mentioned the problems with exercise therapy and the controversial studies on which this treatment is based. Maier used the word ‘scandal’ to describe the care of ME/CFS patients in Germany.
Broadcast here (starts at minute 3:50) Thread here
BookTrust "Canaries in the coalmine: Why Marcus Sedgwick is writing about Chronic Fatigue and illnesses we all need to understand better"
Author Marcus Sedgwick has just released the book "Snowflake, AZ"; a pre-apocalyptic story about an isolated community in USA calling themselves the Canaries and suffering from a sickness no-one understands. In the article Sedgwick tells the background for the book as he suffers from CFS/ME or Multiple Chemical Sensitivity himself and this made him seek out the community.
Article here Thread here
.....................................
Useful resources
Online training for school nurses
Northeastern University (USA) School of Nursing
''Why Can't This Child Get to Class? Learn how ME/CFS keeps youth from attending school'', with Dr Peter Rowe, pediatrician; nurse Lisa Hall, and two mothers of children with ME.
Forum member Hutan has provided a helpful review of the mostly good and some less good features of this 3.5 hour course.
Course details and signup here Thread here
German medical journal Ärzteblatt Sachsen
Dr. Carmen Scheibenbogen and colleagues have published an overview on ME/CFS. Translated into English the title reads “Chronic fatigue syndrome (CFS): Practical recommendations for diagnostics and therapy.” The article includes a section on children and adolescents with ME/CFS and has been positively received on social media.
Article here (in German) Thread here
.......................................
Biomedical Research Videos
Stanford Symposium The 3rd Annual Community Symposium was held on 7th September and live-streamed. The videos will be put on You Tube. There was news of revamping the ME/CFS center at Stanford. Research news included more evidence of 'something in the blood'. The research on red blood cell deformability has not shown a difference from healthy patients' cells but both groups showed significant heterogeneity - more experiments are planned.
Live-stream summary here Thread here
Science for ME Q&A with Dr Karl Morten, University of Oxford.
In a two part interview, Dr Morten of Oxford University tells @Andy how he became interested in researching ME, and answers forum members' questions about his recent paper on the Acumen test, his research showing 'something in the blood', and his future hopes and plans for continued research including collaborations with researchers in the UK, Spain and Poland. Part 1 - 28 minutes, Part 2 - 40 minutes.
Thread with links to videos here
ME/CFS Alert "Finding an ME/CFS Biomarker, Ronald Davis, Stanford University"
Llewellyn King interviews Prof. Ron Davis. They talk about his research, the struggle for more research funds, data collecting and the hypothesis about the metabolic trap as a possible explanation for ME and more. Duration: 25 minutes.
Interview here Thread here
........................................
Biomedical research
European Journal of Applied Physiology "Unexplained exertional intolerance associated with impaired systemic oxygen extraction" by Kathryn H Melamed, David M. Systrom et al
The researchers reviewed invasive cardiopulmonary test results of 313 patients with unexplained exertional intolerance. The paper focuses mainly on a small subset of patients: "We identified a cohort of patients whose exercise limitation is due only to systemic oxygen extraction, due to either an intrinsic abnormality of skeletal muscle mitochondrion, limb muscle microcirculatory dysregulation, or hyperventilation and left shift the oxyhemoglobin dissociation curve" They indicate that these patients had a diagnosis of ME/CFS.
Paper here Thread here
JAMA Neurology
''Scientific Advances in and Clinical Approaches to Small-Fiber Polyneuropathy - A Review'' by Oaklander and Nolano.
A common condition often undiagnosed causing chronic bilateral neuropathic pain, fatigue, and nausea. Diagnosed by skin biopsy. ''...evidence suggests that small-fiber dysfunction and denervation, especially of blood vessels, contributes to diverse symptoms, including postexertional malaise, postural orthostatic tachycardia, and functional gastrointestinal distress''.
Article here Thread here
Student thesis
'Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol' by Pelligrini.
Aggregated results from 45 participants with ME/CFS compared with healthy controls found ''essentially the same regions of the brain shown to be abnormal as the SPECT studies done of ME brains by Dr. Byron Hyde''.
Thesis here Thread here
Pharmacological Research
''ME/CFS: From Pathophysiological Insights to Novel Therapeutic Opportunities'' by Berk et al.
After a brief overview of some biomedical research most of this article looks at some treatments the authors think might be worth testing for ME/CFS, including coenzyme Q10, melatonin and curcumin. Most of the evidence they cite comes from animal studies, and studies on people with other conditions. They also discuss CBT/GET concluding they only have modest benefits for some people and GET may cause harm.
Article here Thread here
Notes on mitochondria research
Forum member Simon M. has written some helpful notes on the paper listed in last week's news by Missailidis et al (including Paul Fisher) that found a problem with Complex V in the mitochondria of people with ME.
A short guide to mitochondria and complex V here
Comments on the research here
......................................
Other research
Quality of Life Research
“Psychometric properties of the PROMIS® Fatigue Short Form 7a among adults with ME/CFS” by Yang et al.
Yang and colleagues tested a short 7-item fatigue questionnaire in a large sample of 549 ME/CFS patients recruited in the CDC’s Multi-Site Clinical Assessment study. The questionnaire showed good internal consistency. Although no floor or ceiling effects were found at the total score level, the questionnaire had trouble differentiating patients who worsened over time versus those who remained stable.
Article here Thread here
Health Care for Women International
“Recovering from CFS as an intra-active process” by Groven & Dahl-Michelsen.
The authors, from the Institute of Physiotherapy in Oslo, Norway have published an article on a woman recovering from ME/CFS through the Lightning Process. The woman explains how she improved by changing her thinking and telling herself: “I am not going back to CFS; I am going to have a life that I love.”
Not a recommendation.
Study here Thread here
......................................
Fundraising
USA A donor has offered to match up to $25,000 in donations to Cornell University's Center for Enervating NeuroImmune Disease to support their research on immune dysregulation in ME/CFS. For a description of this research watch Dr. Maureen Hanson's presentation from the OMF Community Symposium.
To donate go here Thread here
......................................
Coming events
USA The CDC ME/CFS Stakeholder Engagement and Communication group will hold a conference call on Sept 16, 2019, from 3:00 to 4:00 pm EDT (noon PDT, 8:00 pm BST, 5:00 am AEST). Participants can call in or join the meeting using the webinar format.
CDC webpage here Thread here
Europe The petition that asks the European Union for increased funding for biomedical research into ME will be discussed at the meeting of the Committee on Petitions on October 3rd. It will be live streamed.
Thread with details here
..........................................
In memory
Dr Peter Behan
''Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron''.
The UK MEA has published an article by Dr Charles Shepherd with his memories of neurologist Dr Behan and his care for patients. ''Unlike most of his neurology colleagues he had no doubt that M.E. was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.''
Dr Behan passed away on 31st August, aged 84.
MEA article here Thread here (members only)
.........................................
S4ME social media: Facebook, Twitter and You Tube
Edited to correct spelling mistake.
Last edited:
Week beginning 16th September 2019
News
UK - NICE The deadline for the call for evidence has been extended to 16th October. The evidence is requested under the headings:
1. Studies that evaluate management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS, and methods of monitoring and/or reviewing people with a diagnosis of ME/CFS.
2. Evidence on the experience of people who have had interventions for ME/CFS (not individual stories).
NICE link with instructions here Thread here
......................................
Trial by Error by David Tuller
Another Batch of Letters to Dr Godlee on BMJ's LP Study Mess
BMJ-editor Dr. Godlee recently received an open letter criticising the publishing of the Lightning Process study and signed by 55 academics. Since then there have been 14 additional individual open letters written by experts and academics. The newest are letters from law professor Steven Lubet, microbiology professor Robert Garry and statistics professor Philip Stark.
Letters here Thread here
My Letter to Professor Chalder about the PRINCE Trial
An open letter to Professor Chalder concerning the protocol of the planned PRINCE study on whether GPs can offer a rehabilitative approach to "persistent physical symptoms". The protocol contains a gross overstatement over the costs of MUS for NHS.
Letter here Thread here
My Letter to BMJ Open about False MUS Claim
An open letter to Adrian Aldcroft, editor-in-chief of BMJ Open concerning the mistake in the PRINCE trial protocol (see above item) where Tuller urges him to do his job and fix the problem.
Letter here Thread here
........................................
Media, videos, blogs, other news..
Science for ME video Q&A with Dr Heidi Nicholl, Emerge Australia.
Dr Nicholl talks about her background in biomedical research, ethics and business, and answers forum members' questions, put by Andy, about the expanding work of Emerge, and the recently awarded funding for setting up an Australian ME/CFS biobank and patient registry, led by Professor Paul Fisher from La Trobe University and Dr Nicholl, with other national and international co-investigators.
Duration: 1 hour.
Video here Thread here
ACSH "Chronic Fatigue Syndrome: Progress Toward Diagnosis And Treatment, Finally?"
Article from American Council on Science and Health about recent developments in the ME field. Mentions the IOM-report, the nano needle, some topical hypothesis about the disease and the recent NIH conference.
Article here Thread here
Blog - A Life Hidden: "Beneath the Surface, Part 1"
First part of a planned series of 3 articles by Naomi Whittingham with her analysis of the British Association for CFS/ME (BACME) guidelines on severe ME. Part 1 contains following sections: Introduction, The Positives, When compassion is misleading and Overview of concerns.
"A clinician can be sympathetic and appear supportive, but still be wrong and still cause harm. The BACME guidelines are the embodiment for this paradox"
Article here Thread here
Finland MillionsMissing Finland has shared a worrying Facebook post in English about a newly opened clinic for functional disorders at Helsinki University Hospital which will be assessing and treating ME patients. It is influenced by the controversial Danish psychiatrist Per Fink. Finnish ME patients demand that WHO's diagnostic code and definition of ME/CFS are obeyed.
Facebook post here Thread here
Norway Author and journalist Jørgen Jelstad is making a blog comeback. His first articles are about the NIH ME research allocations and an introduction to the centres who received funding.
Blog here Thread with google translations here
Hope 4 ME & Fibro Northern Ireland The event ''New Frontiers in M.E. -Transforming Patient Safety & Care'' was held on 4th Sept. Speakers: Brian Hughes, Caroline Kingdon, and David Systrom.
Videos of the talks are now available on sale as DVD, USB or Blueray.
Thread with details here
USA Solve, in an e-mail, has given an update on Federal research funding, including ''If approved in the final budget, ME/CFS will be an eligible topic area for the Peer-Reviewed Medical Research Program (PRMRP), which is funded at $350 million next year.''
Thread with copy of e-mail here
Romania Mike's EU Marathons website has an article about Mike's interview with Andreea who describes the lack of knowledge of, and support for, people with ME in Romania.
Article here Thread here
.......................................
Research
The BMJ - Research Methods and Reporting
''Re: RoB 2: a revised tool for assessing risk of bias in randomised trials'' by Prof Jonathan Edwards.
Prof. Edwards points out that the recently published revised tool weakens the tool and raises the risk of bias, giving the example of the SMILE trial. He concludes: ''We appear to be moving towards acceptance of methodology that for decades we have known yields meaningless results. I am concerned that bodies like Cochrane and the BMJ are sleepwalking into a situation where they rubber stamp commercial ventures of no merit.''
Letter here Thread here
Frontiers in Pediatrics
Editorial: ''Advances in ME/CFS Research and Clinical Care'' by Friedman, Bateman, Bested and Nahle.
An overview of the problems faced by patients and clinicians, and the lack of research funding, including recent changes in NIH funding. Outlines the collected series of articles published by Frontiers on several aspects of ME - research, diagnosis, clinical care and pediatrics. Future articles are planned on severe ME.
Editorial here Thread here
Diagnostics
"Work Rehabilitation and Medical Retirement for ME/CFS Patients. A Review and Appraisal of Diagnostic Strategies" by Vink & Vink-Niese.
The authors have published an extensive overview on the prognosis of ME/CFS patients in terms of returning to work. They conclude that cognitive behavioural therapy and graded exercise therapy do not restore the ability to work and that patients who are given a period of enforced rest from the onset, have the best prognosis.
Article here Thread here
Journal of the American Medical Association (JAMA)
“'It’s All in Your Head'—Medicine’s Silent Epidemic" by Matthew J. Burke.
In this brief viewpoint in JAMA, Burke writes that there is a silent epidemic of patients with medically unexplained symptoms. He argues that these patients are currently underserved in the medical system and frequently dismissed by doctors saying: “It’s all in your head.” As a result, “patients often either fall through the cracks or stumble on a fringe medical specialist or alternative medicine practitioner who may offer the ‘physical’ diagnosis they’ve been yearning for.” Burke advises doctors to take more time to optimize their relationship with these patients and to refer to interdisciplinary management such as physical therapy and psychotherapy when appropriate.
Article here Thread here
.......................................
Biomedical research
Preprints (not peer reviewed)
''How ME/CFS Progresses: A Framework for Research and the Prevention, Treatment, and Rehabilitation in ME/CFS'' by Nacul et al.
Detailed article (16 pages plus references) with biomedical hypotheses about different stages of ME/CFS. ''As disease presentation varies over time, no single case description, set of diagnostic criteria, or molecular feature is currently diagnostic for all patients at all times.'' Suggests research and treatment needs to take this into account.
Article with link to open access pdf here Thread here
Research proposal
The Harvard ME/CFS Collaboration at Harvard-Affiliated Hospitals
''Skeletal Muscle Dysfunction''. A research project is proposed that uses muscle biopsies at rest and after exertion in ME/CFS patients and healthy controls to do a multiomics study that focuses on genomics, proteomics, and ultrastructural features of skeletal muscle cells. An international collaboration with centres in the USA and UK.
Article here Thread here
.........................................
Coming events
#MEAction Sunday 22 September (2.30pm PT)
Advocates Terri Wilder and Ryan Pryor will speak about #MEAction at Stanford MEDx Conference It will be live streamed.
Thread with details here
Solve ME/CFS Initiative webinar - October 3, (10am PT, 1pm ET)
''Advances in ME/CFS Research and Clinical Care'' by Dr. Kenneth Friedman. See item above for the editorial by Friedman et al. in a journal special issue on ME/CFS. This is part of a series of monthly webinars with future topics including genetics, the microbiome, and demographics of ME/CFS.
Details here Thread here
............................................
S4ME social media: Facebook, Twitter and You Tube
News
UK - NICE The deadline for the call for evidence has been extended to 16th October. The evidence is requested under the headings:
1. Studies that evaluate management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS, and methods of monitoring and/or reviewing people with a diagnosis of ME/CFS.
2. Evidence on the experience of people who have had interventions for ME/CFS (not individual stories).
NICE link with instructions here Thread here
......................................
Trial by Error by David Tuller
Another Batch of Letters to Dr Godlee on BMJ's LP Study Mess
BMJ-editor Dr. Godlee recently received an open letter criticising the publishing of the Lightning Process study and signed by 55 academics. Since then there have been 14 additional individual open letters written by experts and academics. The newest are letters from law professor Steven Lubet, microbiology professor Robert Garry and statistics professor Philip Stark.
Letters here Thread here
My Letter to Professor Chalder about the PRINCE Trial
An open letter to Professor Chalder concerning the protocol of the planned PRINCE study on whether GPs can offer a rehabilitative approach to "persistent physical symptoms". The protocol contains a gross overstatement over the costs of MUS for NHS.
Letter here Thread here
My Letter to BMJ Open about False MUS Claim
An open letter to Adrian Aldcroft, editor-in-chief of BMJ Open concerning the mistake in the PRINCE trial protocol (see above item) where Tuller urges him to do his job and fix the problem.
Letter here Thread here
........................................
Media, videos, blogs, other news..
Science for ME video Q&A with Dr Heidi Nicholl, Emerge Australia.
Dr Nicholl talks about her background in biomedical research, ethics and business, and answers forum members' questions, put by Andy, about the expanding work of Emerge, and the recently awarded funding for setting up an Australian ME/CFS biobank and patient registry, led by Professor Paul Fisher from La Trobe University and Dr Nicholl, with other national and international co-investigators.
Duration: 1 hour.
Video here Thread here
ACSH "Chronic Fatigue Syndrome: Progress Toward Diagnosis And Treatment, Finally?"
Article from American Council on Science and Health about recent developments in the ME field. Mentions the IOM-report, the nano needle, some topical hypothesis about the disease and the recent NIH conference.
Article here Thread here
Blog - A Life Hidden: "Beneath the Surface, Part 1"
First part of a planned series of 3 articles by Naomi Whittingham with her analysis of the British Association for CFS/ME (BACME) guidelines on severe ME. Part 1 contains following sections: Introduction, The Positives, When compassion is misleading and Overview of concerns.
"A clinician can be sympathetic and appear supportive, but still be wrong and still cause harm. The BACME guidelines are the embodiment for this paradox"
Article here Thread here
Finland MillionsMissing Finland has shared a worrying Facebook post in English about a newly opened clinic for functional disorders at Helsinki University Hospital which will be assessing and treating ME patients. It is influenced by the controversial Danish psychiatrist Per Fink. Finnish ME patients demand that WHO's diagnostic code and definition of ME/CFS are obeyed.
Facebook post here Thread here
Norway Author and journalist Jørgen Jelstad is making a blog comeback. His first articles are about the NIH ME research allocations and an introduction to the centres who received funding.
Blog here Thread with google translations here
Hope 4 ME & Fibro Northern Ireland The event ''New Frontiers in M.E. -Transforming Patient Safety & Care'' was held on 4th Sept. Speakers: Brian Hughes, Caroline Kingdon, and David Systrom.
Videos of the talks are now available on sale as DVD, USB or Blueray.
Thread with details here
USA Solve, in an e-mail, has given an update on Federal research funding, including ''If approved in the final budget, ME/CFS will be an eligible topic area for the Peer-Reviewed Medical Research Program (PRMRP), which is funded at $350 million next year.''
Thread with copy of e-mail here
Romania Mike's EU Marathons website has an article about Mike's interview with Andreea who describes the lack of knowledge of, and support for, people with ME in Romania.
Article here Thread here
.......................................
Research
The BMJ - Research Methods and Reporting
''Re: RoB 2: a revised tool for assessing risk of bias in randomised trials'' by Prof Jonathan Edwards.
Prof. Edwards points out that the recently published revised tool weakens the tool and raises the risk of bias, giving the example of the SMILE trial. He concludes: ''We appear to be moving towards acceptance of methodology that for decades we have known yields meaningless results. I am concerned that bodies like Cochrane and the BMJ are sleepwalking into a situation where they rubber stamp commercial ventures of no merit.''
Letter here Thread here
Frontiers in Pediatrics
Editorial: ''Advances in ME/CFS Research and Clinical Care'' by Friedman, Bateman, Bested and Nahle.
An overview of the problems faced by patients and clinicians, and the lack of research funding, including recent changes in NIH funding. Outlines the collected series of articles published by Frontiers on several aspects of ME - research, diagnosis, clinical care and pediatrics. Future articles are planned on severe ME.
Editorial here Thread here
Diagnostics
"Work Rehabilitation and Medical Retirement for ME/CFS Patients. A Review and Appraisal of Diagnostic Strategies" by Vink & Vink-Niese.
The authors have published an extensive overview on the prognosis of ME/CFS patients in terms of returning to work. They conclude that cognitive behavioural therapy and graded exercise therapy do not restore the ability to work and that patients who are given a period of enforced rest from the onset, have the best prognosis.
Article here Thread here
Journal of the American Medical Association (JAMA)
“'It’s All in Your Head'—Medicine’s Silent Epidemic" by Matthew J. Burke.
In this brief viewpoint in JAMA, Burke writes that there is a silent epidemic of patients with medically unexplained symptoms. He argues that these patients are currently underserved in the medical system and frequently dismissed by doctors saying: “It’s all in your head.” As a result, “patients often either fall through the cracks or stumble on a fringe medical specialist or alternative medicine practitioner who may offer the ‘physical’ diagnosis they’ve been yearning for.” Burke advises doctors to take more time to optimize their relationship with these patients and to refer to interdisciplinary management such as physical therapy and psychotherapy when appropriate.
Article here Thread here
.......................................
Biomedical research
Preprints (not peer reviewed)
''How ME/CFS Progresses: A Framework for Research and the Prevention, Treatment, and Rehabilitation in ME/CFS'' by Nacul et al.
Detailed article (16 pages plus references) with biomedical hypotheses about different stages of ME/CFS. ''As disease presentation varies over time, no single case description, set of diagnostic criteria, or molecular feature is currently diagnostic for all patients at all times.'' Suggests research and treatment needs to take this into account.
Article with link to open access pdf here Thread here
Research proposal
The Harvard ME/CFS Collaboration at Harvard-Affiliated Hospitals
''Skeletal Muscle Dysfunction''. A research project is proposed that uses muscle biopsies at rest and after exertion in ME/CFS patients and healthy controls to do a multiomics study that focuses on genomics, proteomics, and ultrastructural features of skeletal muscle cells. An international collaboration with centres in the USA and UK.
Article here Thread here
.........................................
Coming events
#MEAction Sunday 22 September (2.30pm PT)
Advocates Terri Wilder and Ryan Pryor will speak about #MEAction at Stanford MEDx Conference It will be live streamed.
Thread with details here
Solve ME/CFS Initiative webinar - October 3, (10am PT, 1pm ET)
''Advances in ME/CFS Research and Clinical Care'' by Dr. Kenneth Friedman. See item above for the editorial by Friedman et al. in a journal special issue on ME/CFS. This is part of a series of monthly webinars with future topics including genetics, the microbiome, and demographics of ME/CFS.
Details here Thread here
............................................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 23rd September 2019
News
Australia ''Medical Research Future Fund win for Emerge Australia : Epidemiology and Health Economic Impacts of ME/CFS''.
Dr Heidi Nicholl, CEO of Emerge, will be co-chief investigator on ‘The ANCHOR Project’, led by the Menzies Institute for Medical Research. It will look at the prevalence and economic costs of ME/CFS in Australia and its far-reaching impacts on patients, carers, the broader community and the health system. $155,000 funding from the Medical Research Future Fund.
Article here Thread here
...........................
Trial by Error by David Tuller
What's Up With Cochrane's Exercise Review? While waiting for the delayed revision of this review from Cochrane, Tuller provides a thorough and useful recap of the events up until now. "If Cochrane endorses a revision that turns out to be more propaganda for the purported benefits of exercise therapy, its reputation is likely to suffer far greater damage than if it pulled the plug on this disaster now and began the process all over again".
Article here Thread here
............................
Media, videos, blogs, other news...
Joe Madison - The Black Eagle is an American radio programme with civil rights activist Joe Madison as host. They recently had a 20 minute section about ME with Llewellyn King and Linda Tannenbaum as guests.
Thread with interview here
Norway "ME and relevant science"
A guest blog by Jørn Tore Haugen, Master of Science in Engineering. He writes about what we've learned through research into ME, and that "there are zero credible or relevant studies to support that CBT, GET or similar biopsychosocial interventions are effective methods in monitoring and treating ME-patients". The blogpost is written in both Norwegian and English (scroll down for English version).
Blog post here Thread here
OMF video Dr Ron Davis gives a brief update on progress in ME research at Stanford, including the recent Symposium, sharing research data with other researchers, and reorganisation of the Stanford ME clinic to include more specialisms and to work more closely with the research scientists. Duration: 9 minutes
You tube link here Thread here
.............................
Useful Resources
Dialogues for a Neglected Illness The first two excellent short videos from this project funded by Wellcome have been released. Duration 9 minutes each.
Understanding Graded Exercise Therapy for ME/CFS:
Part 1 - Staci Stevens of the Workwell Foundation and Prof Mark van Ness explain findings from 2 day CPET testing, and Dr Chris Snell, Former Chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the US Secretary for Health explains that GET is 'more likely to do harm than good', and has been removed from US guidelines.
Part 2 - the PACE trial. Professors Brian Hughes and Jonathan Edwards describe the many methodological problems of the PACE trial and other similar psychological trials and why this means these trials do not provide reliable evidence. The problems with Cochrane reviews based on these trials are discussed.
Videos here Thread here
.............................
Biomedical research
Frontiers in Pharmacology - Ethnopharmacology
''The Efficacy and Safety of Myelophil, an Ethanol Extract Mixture of Astragali Radix and Salviae Radix, for CFS: A Randomized Clinical Trial'' by Joung et al.
A double-blind controlled phase 2 trial of a herbal mixture on 98 Korean patients with Fukuda criteria CFS over 12 weeks found no between group differences in various questionnaires and biomedical tests. Post hoc analysis of the more severely affected patients showed some statistically significant questionnaire differences between treatment and control group. The authors say this justifies a phase 3 trial with moderate and severe patients.
Paper here Thread here
Other research
The BMJ: rapid responses
Caroline Struthers and Michiel Tack have, each separately, submitted a rapid response to the new risk of bias tool (RoB2), published last month. Struthers raises the issue of conflicts of interest as a source of bias. She proposes to systematically collect and present information on funding source, researcher allegiance and patient involvement. Tack proposes three changes to make the tool less ambiguous, such as removing question 4.5.
Struthers' letter here Tack's letter here
.............................
Advocacy
Global - #MEAction: Values & Policy Initiative
The ME Action group has started an initiative to "add clarity to all areas of our work and for the entire community to understand #MEAction’s values and policies." Anyone can participate. This is a long term project that will continue over several months.
Details here Thread here
.............................
Fundraising
USA - ME/CFS Benefit Concert: An Evening with Marian Call
On the evening of October 5th singer-songwriter Marian Call will perform at the Mystic Theatre in Petaluma, California. In addition to the concert brief talks will be given by speakers from three highly-regarded national ME/CFS organizations: Bateman Horne Center, Solve ME/CFS Initiative and Open Medicine Foundation.
Details here Thread here
USA - 5K Run/Walk
On Sunday, October 6th, there will be a 5K Run/Walk in St. Paul, Oregon. Proceeds will go to the Open Medicine Foundation.
Details here Thread here
Germany - Rap for Good
On Thursday September 26th, The ‘Rap for Good’ concert in Berlin was dedicated to ME/CFS. It included some popular rap and hip hop artists in Germany. 3000 guests and the more than 6000 viewers at the livestream were told about ME/CFS and repeatedly asked to tweet to the German health minister about ME/CFS. The artists played for free. Donations went to a German ME/CFS patient and the Open Medicine Foundation.
Thread here
.............................
Survey
UK #MEAction has set up a survey of patients' experiences with UK ME/CFS services. The results are intended as a contribution to the NICE guideline committee's call for evidence. Closing date: 7th October 2019.
Article with link to survey here Thread here
.................................
Coming events
USA The 2020 IACFS/ME Conference is scheduled for June 10-13, 2020 at Stony Brook University in Stony Brook, NY. Call for abstracts tentatively scheduled for Nov. 1, 2019.
Thread here
................................
S4ME social media: Facebook, Twitter and You Tube
News
Australia ''Medical Research Future Fund win for Emerge Australia : Epidemiology and Health Economic Impacts of ME/CFS''.
Dr Heidi Nicholl, CEO of Emerge, will be co-chief investigator on ‘The ANCHOR Project’, led by the Menzies Institute for Medical Research. It will look at the prevalence and economic costs of ME/CFS in Australia and its far-reaching impacts on patients, carers, the broader community and the health system. $155,000 funding from the Medical Research Future Fund.
Article here Thread here
...........................
Trial by Error by David Tuller
What's Up With Cochrane's Exercise Review? While waiting for the delayed revision of this review from Cochrane, Tuller provides a thorough and useful recap of the events up until now. "If Cochrane endorses a revision that turns out to be more propaganda for the purported benefits of exercise therapy, its reputation is likely to suffer far greater damage than if it pulled the plug on this disaster now and began the process all over again".
Article here Thread here
............................
Media, videos, blogs, other news...
Joe Madison - The Black Eagle is an American radio programme with civil rights activist Joe Madison as host. They recently had a 20 minute section about ME with Llewellyn King and Linda Tannenbaum as guests.
Thread with interview here
Norway "ME and relevant science"
A guest blog by Jørn Tore Haugen, Master of Science in Engineering. He writes about what we've learned through research into ME, and that "there are zero credible or relevant studies to support that CBT, GET or similar biopsychosocial interventions are effective methods in monitoring and treating ME-patients". The blogpost is written in both Norwegian and English (scroll down for English version).
Blog post here Thread here
OMF video Dr Ron Davis gives a brief update on progress in ME research at Stanford, including the recent Symposium, sharing research data with other researchers, and reorganisation of the Stanford ME clinic to include more specialisms and to work more closely with the research scientists. Duration: 9 minutes
You tube link here Thread here
.............................
Useful Resources
Dialogues for a Neglected Illness The first two excellent short videos from this project funded by Wellcome have been released. Duration 9 minutes each.
Understanding Graded Exercise Therapy for ME/CFS:
Part 1 - Staci Stevens of the Workwell Foundation and Prof Mark van Ness explain findings from 2 day CPET testing, and Dr Chris Snell, Former Chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the US Secretary for Health explains that GET is 'more likely to do harm than good', and has been removed from US guidelines.
Part 2 - the PACE trial. Professors Brian Hughes and Jonathan Edwards describe the many methodological problems of the PACE trial and other similar psychological trials and why this means these trials do not provide reliable evidence. The problems with Cochrane reviews based on these trials are discussed.
Videos here Thread here
.............................
Biomedical research
Frontiers in Pharmacology - Ethnopharmacology
''The Efficacy and Safety of Myelophil, an Ethanol Extract Mixture of Astragali Radix and Salviae Radix, for CFS: A Randomized Clinical Trial'' by Joung et al.
A double-blind controlled phase 2 trial of a herbal mixture on 98 Korean patients with Fukuda criteria CFS over 12 weeks found no between group differences in various questionnaires and biomedical tests. Post hoc analysis of the more severely affected patients showed some statistically significant questionnaire differences between treatment and control group. The authors say this justifies a phase 3 trial with moderate and severe patients.
Paper here Thread here
Other research
The BMJ: rapid responses
Caroline Struthers and Michiel Tack have, each separately, submitted a rapid response to the new risk of bias tool (RoB2), published last month. Struthers raises the issue of conflicts of interest as a source of bias. She proposes to systematically collect and present information on funding source, researcher allegiance and patient involvement. Tack proposes three changes to make the tool less ambiguous, such as removing question 4.5.
Struthers' letter here Tack's letter here
.............................
Advocacy
Global - #MEAction: Values & Policy Initiative
The ME Action group has started an initiative to "add clarity to all areas of our work and for the entire community to understand #MEAction’s values and policies." Anyone can participate. This is a long term project that will continue over several months.
Details here Thread here
.............................
Fundraising
USA - ME/CFS Benefit Concert: An Evening with Marian Call
On the evening of October 5th singer-songwriter Marian Call will perform at the Mystic Theatre in Petaluma, California. In addition to the concert brief talks will be given by speakers from three highly-regarded national ME/CFS organizations: Bateman Horne Center, Solve ME/CFS Initiative and Open Medicine Foundation.
Details here Thread here
USA - 5K Run/Walk
On Sunday, October 6th, there will be a 5K Run/Walk in St. Paul, Oregon. Proceeds will go to the Open Medicine Foundation.
Details here Thread here
Germany - Rap for Good
On Thursday September 26th, The ‘Rap for Good’ concert in Berlin was dedicated to ME/CFS. It included some popular rap and hip hop artists in Germany. 3000 guests and the more than 6000 viewers at the livestream were told about ME/CFS and repeatedly asked to tweet to the German health minister about ME/CFS. The artists played for free. Donations went to a German ME/CFS patient and the Open Medicine Foundation.
Thread here
.............................
Survey
UK #MEAction has set up a survey of patients' experiences with UK ME/CFS services. The results are intended as a contribution to the NICE guideline committee's call for evidence. Closing date: 7th October 2019.
Article with link to survey here Thread here
.................................
Coming events
USA The 2020 IACFS/ME Conference is scheduled for June 10-13, 2020 at Stony Brook University in Stony Brook, NY. Call for abstracts tentatively scheduled for Nov. 1, 2019.
Thread here
................................
S4ME social media: Facebook, Twitter and You Tube
Thread for next month's news:
News in Brief - October 2019
News in Brief - October 2019