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News in Brief - April 2019
- Thread starter Trish
- Start date
Week beginning 1st April 2019
News
UK: CBT/GET survey results published
The online survey was commissioned by Forward ME following discussions with the NICE guideline group chair and MP's, and analysed at Oxford Brooke's University.
2274 took part reporting on their experiences of CBT and GET treatments for ME/CFS in the UK since 2007.
''In summary, the majority of individuals reported deterioration or no change in symptoms and health over the course of all treatment approaches.''
MEA report including Forward ME summary here
Oxford Brookes University full report by Professor Helen Dawes, 25 pages here
Forward ME minutes including discussion of report with Prof Dawes here
#MEAction summary here
Thread here
Dr Luis Nacul has been appointed as Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada. He will continue some involvement with the UK ME/CFS Biobank where he is currently Principal investigator, and will still serve on the NICE guideline ME/CFS group.
Cure ME announcement here Thread here
UK FOI A First Tier Freedom of Information Tribunal has rejected John Peters' request for recorded numbers of incidents of harassment (with and without police involvement) of ME/CFS researchers at Queen Mary University London.
Tribunal decision pdf here Thread here
.........................................................
Trial by Error by David Tuller
A bit more on Kaiser Permanente
BerkeleyWellness.com has posted an interview by Tuller with Dr Steve Olson from Kaiser Permanente. Hopefully this will lead to more people becoming aware of Kaiser Permanente's new and improved approach to ME, but there are still some questions to be answered.
Article here Thread here
This Year’s US Clinician Summit
David reminds us of the first Clinician Summit last year including their statement that CBT/GET are inappropriate treatments for ME/CFS.
He includes a report on this year's summit: ''What’s Next for the ME/CFS Clinician Coalition?'' by Stephanie Griffin. The group plan to set up a website with clinical guidance for diagnosis and management ME/CFS. They see an urgent need for more ME/CFS clinicians and for medical trials of treatments with LDN (Low dose Naltrexone) as the first priority.
Article here Thread here
..................................................
Articles, podcasts, blogs...
The ME Global Chronicle, March 2019
Contains 100 pages with news from around the world, updates on research and awareness/advocacy work.
Thread with link to chronicle here
The ME Show Series 2 Episode 10
Gary Burgess interviews Dr Mark Guthridge, Australian cancer researcher. After getting ME himself following glandular fever in 2015 he is now hoping to use his research experience to start researching ME. He talks about the recent EMERGE symposium in Australia, particularly the positive involvement of patients. He explains the problems with the psychiatric CBT/GET approach to ME, and the changing views on this with new biomedical findings.
MEA article with links here Thread here
Podcast series 'It's not all about ME' presented by Paddy who has ME. This week he interviewed John Peters (@JohnTheJack) who described his experience of having ME since 1985. Topics covered include virus infections, the life changing effects of cognitive dysfunction, the negative change in medical attitudes since the psychiatric CBT/GET model was developed, and the PACE trial.
Thread with link to podcast here
..........................................................
Conference report
NIH ''Accelerating Research on ME/CFS'' conference was held at NIH on April 4-5th with aim to present high-quality studies. Themes were metabolomics/metabolism, immunology, provocation studies, clinical panel discussion, intramural study update, microbiome/virome, new technology, imaging of the CNS, orthostatic/autonomic disorders.
The conference was live-streamed and the meeting archive will be available on the NIH Videocast in approximately a week.
Transcript of Dr Collins' talk here Thread here
........................................................
Useful resources
ME Association (UK) MEA summary review: Assessing PEM (Post-exertional malaise) by Charlotte Stephens.
14 page pdf document that covers definitions of PEM, clinical assessment and management including heart rate monitoring, and the latest research.
Document here Thread here
Frontiers in Pediatrics
''Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician'' Faith R. Newton.
Describes the need for better information for schools about ME such as reduced work load and understanding of symptoms such as brain fog and orthostatic intolerance, and consequent needs of the child. Suggests what to put in a Physician's letter to the school.
Article here Thread here
...........................................................
Biomedical Research - Rituximab trial published
Annals of Internal Medicine
''B-Lymphocyte Depletion in Patients With ME/CFS: A Randomized, Double-Blind, Placebo-Controlled Trial'' by Fluge, Mella et al.
The large and well conducted Phase 3 double blind clinical trial of Rituximab for ME/CFS showed the drug is not an effective treatment for ME.
Editorial ''ME/CFS: Trial Fails to Confirm Earlier Observations of Rituximab's Effectiveness'' by Peter Rowe.
Explains what ME/CFS is and the current treatment situation including pointing out the ineffectiveness of CBT/GET shown after PACE reanalysis.
Summaries for Patients ''Rituximab for Patients With ME/CFS'' by Fluge et al.
Explains how and why the trial was done, and the outcome.
Paper here Editorial here Patient summary here Thread here
Articles about the trial:
Healio - Primary Care Today here Kavli Trust here Medscape here
..............................................................
Biomedical research and hypotheses
Frontiers in Immunology
''Cellular immune function in ME/CFS'' by Nacul et al.
UK ME/CFS Biobank samples used to compare ME/CFS with controls. No difference from healthy controls found in herpes virus prevalence or NK cells. Some T cell differences found particularly in severely affected. Suggests longitudinal studies needed to determine cause of this.
Paper here (provisional) Thread here
Clinical Therapeutics
''A Timely Multidisciplinary Update on ME/CFS'' by T. Theoharides.
''In the April and May issues of Clinical Therapeutics, a number of experts report on recent findings on the diagnosis, pathogenesis, and treatment of ME/CFS.''
This article outlines some of the history and current state of ME/CFS research and outlines the upcoming articles.
Article here Thread here
Clinical Therapeutics
''Leveraging Prior Knowledge of Endocrine Immune Regulation in the Therapeutically Relevant Phenotyping of Women With CFS'' by Morris et al.
Complicated theoretical models using data of various hormone levels before and after exercise were developed in order to predict outcomes of drug treatments in subgroups. (at least I think that's what it's saying).
Paper here Thread here
...........................................................
Other Research and an overview
Frontiers in Pediatrics
Perspective article: ''Advances in ME/CFS: Past, Present and Future'' by Kenneth Friedman
Describes the history of mis-classification of ME/CFS as psychosomatic and the detrimental effect this has had on research and treatment. Compares the history of research, treatment and support with HIV/AIDS.
Paper here (provisional) Thread here
Fatigue, Biomedicine, Health and Behaviour
''ME/CFS case definitions: effects of requiring a substantial reduction in functioning'' by L. Jason et al.
Looked at data from a large sample of CFS patients and some healthy controls and patients with other chronic illnesses and the different definitions of ME/CFS.
Concludes: ''These results suggest that the requirement of a substantial reduction in functioning may be redundant when case definitions specify that individuals must endorse a set of core symptoms at specified frequency and severity levels.''
Paper here Thread here
Clinical Nursing Research
''Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences'' by Cuesta et al.
A sociological study found the daily experiences of people with these conditions was marked by stigmatisation. The authors conclude: 'The ultimate purpose of nursing care for people with these conditions should be to reduce their vulnerability and exclusion.'
Paper here Thread here
Clinical Child Psychology and Psychiatry
''Depressive symptoms in adolescents with CFS: Are rates higher than in controls and do depressive symptoms affect outcome?'' by Loades, Chalder et al.
This is the third questionnaire based study published recently on the same cohort of CFS and asthma patients. Not a recommendation.
Paper here Thread here
...........................................................
Advocacy action
Occupy ME ''NIH Deadlines'' by Jennie Spotila
About three opportunities for the ME community to engage with NIH.
Blog post here Thread here
USA NIH ''Request for Information: Soliciting Input on How Best to Advance ME/CFS Research.''
The deadline for submissions has been extended to May 1st 2019. The NIH has provided a simple on line form to fill in with your responses under heading such as the most compelling research needs, strategies, barriers etc.
NIH link here Thread here
Germany Petition to the Ministry of Health asking for better funding, clinical care etc for ME/CFS. In German - see thread for translation. People outside Germany can sign.
Thread with link here
.........................................................
Fundraising
David Tuller ''Trial By Error: April is Berkeley Crowdfunding Month!''
Fundraising for another year of David Tuller's Senior Research Fellow post at Berkeley is officially opened this week and runs for the month of April.
Article here Donate here Thread here
................................................................
S4ME social media: Facebook, Twitter and You Tube.
News
UK: CBT/GET survey results published
The online survey was commissioned by Forward ME following discussions with the NICE guideline group chair and MP's, and analysed at Oxford Brooke's University.
2274 took part reporting on their experiences of CBT and GET treatments for ME/CFS in the UK since 2007.
''In summary, the majority of individuals reported deterioration or no change in symptoms and health over the course of all treatment approaches.''
MEA report including Forward ME summary here
Oxford Brookes University full report by Professor Helen Dawes, 25 pages here
Forward ME minutes including discussion of report with Prof Dawes here
#MEAction summary here
Thread here
Dr Luis Nacul has been appointed as Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada. He will continue some involvement with the UK ME/CFS Biobank where he is currently Principal investigator, and will still serve on the NICE guideline ME/CFS group.
Cure ME announcement here Thread here
UK FOI A First Tier Freedom of Information Tribunal has rejected John Peters' request for recorded numbers of incidents of harassment (with and without police involvement) of ME/CFS researchers at Queen Mary University London.
Tribunal decision pdf here Thread here
.........................................................
Trial by Error by David Tuller
A bit more on Kaiser Permanente
BerkeleyWellness.com has posted an interview by Tuller with Dr Steve Olson from Kaiser Permanente. Hopefully this will lead to more people becoming aware of Kaiser Permanente's new and improved approach to ME, but there are still some questions to be answered.
Article here Thread here
This Year’s US Clinician Summit
David reminds us of the first Clinician Summit last year including their statement that CBT/GET are inappropriate treatments for ME/CFS.
He includes a report on this year's summit: ''What’s Next for the ME/CFS Clinician Coalition?'' by Stephanie Griffin. The group plan to set up a website with clinical guidance for diagnosis and management ME/CFS. They see an urgent need for more ME/CFS clinicians and for medical trials of treatments with LDN (Low dose Naltrexone) as the first priority.
Article here Thread here
..................................................
Articles, podcasts, blogs...
The ME Global Chronicle, March 2019
Contains 100 pages with news from around the world, updates on research and awareness/advocacy work.
Thread with link to chronicle here
The ME Show Series 2 Episode 10
Gary Burgess interviews Dr Mark Guthridge, Australian cancer researcher. After getting ME himself following glandular fever in 2015 he is now hoping to use his research experience to start researching ME. He talks about the recent EMERGE symposium in Australia, particularly the positive involvement of patients. He explains the problems with the psychiatric CBT/GET approach to ME, and the changing views on this with new biomedical findings.
MEA article with links here Thread here
Podcast series 'It's not all about ME' presented by Paddy who has ME. This week he interviewed John Peters (@JohnTheJack) who described his experience of having ME since 1985. Topics covered include virus infections, the life changing effects of cognitive dysfunction, the negative change in medical attitudes since the psychiatric CBT/GET model was developed, and the PACE trial.
Thread with link to podcast here
..........................................................
Conference report
NIH ''Accelerating Research on ME/CFS'' conference was held at NIH on April 4-5th with aim to present high-quality studies. Themes were metabolomics/metabolism, immunology, provocation studies, clinical panel discussion, intramural study update, microbiome/virome, new technology, imaging of the CNS, orthostatic/autonomic disorders.
The conference was live-streamed and the meeting archive will be available on the NIH Videocast in approximately a week.
Transcript of Dr Collins' talk here Thread here
........................................................
Useful resources
ME Association (UK) MEA summary review: Assessing PEM (Post-exertional malaise) by Charlotte Stephens.
14 page pdf document that covers definitions of PEM, clinical assessment and management including heart rate monitoring, and the latest research.
Document here Thread here
Frontiers in Pediatrics
''Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician'' Faith R. Newton.
Describes the need for better information for schools about ME such as reduced work load and understanding of symptoms such as brain fog and orthostatic intolerance, and consequent needs of the child. Suggests what to put in a Physician's letter to the school.
Article here Thread here
...........................................................
Biomedical Research - Rituximab trial published
Annals of Internal Medicine
''B-Lymphocyte Depletion in Patients With ME/CFS: A Randomized, Double-Blind, Placebo-Controlled Trial'' by Fluge, Mella et al.
The large and well conducted Phase 3 double blind clinical trial of Rituximab for ME/CFS showed the drug is not an effective treatment for ME.
Editorial ''ME/CFS: Trial Fails to Confirm Earlier Observations of Rituximab's Effectiveness'' by Peter Rowe.
Explains what ME/CFS is and the current treatment situation including pointing out the ineffectiveness of CBT/GET shown after PACE reanalysis.
Summaries for Patients ''Rituximab for Patients With ME/CFS'' by Fluge et al.
Explains how and why the trial was done, and the outcome.
Paper here Editorial here Patient summary here Thread here
Articles about the trial:
Healio - Primary Care Today here Kavli Trust here Medscape here
..............................................................
Biomedical research and hypotheses
Frontiers in Immunology
''Cellular immune function in ME/CFS'' by Nacul et al.
UK ME/CFS Biobank samples used to compare ME/CFS with controls. No difference from healthy controls found in herpes virus prevalence or NK cells. Some T cell differences found particularly in severely affected. Suggests longitudinal studies needed to determine cause of this.
Paper here (provisional) Thread here
Clinical Therapeutics
''A Timely Multidisciplinary Update on ME/CFS'' by T. Theoharides.
''In the April and May issues of Clinical Therapeutics, a number of experts report on recent findings on the diagnosis, pathogenesis, and treatment of ME/CFS.''
This article outlines some of the history and current state of ME/CFS research and outlines the upcoming articles.
Article here Thread here
Clinical Therapeutics
''Leveraging Prior Knowledge of Endocrine Immune Regulation in the Therapeutically Relevant Phenotyping of Women With CFS'' by Morris et al.
Complicated theoretical models using data of various hormone levels before and after exercise were developed in order to predict outcomes of drug treatments in subgroups. (at least I think that's what it's saying).
Paper here Thread here
...........................................................
Other Research and an overview
Frontiers in Pediatrics
Perspective article: ''Advances in ME/CFS: Past, Present and Future'' by Kenneth Friedman
Describes the history of mis-classification of ME/CFS as psychosomatic and the detrimental effect this has had on research and treatment. Compares the history of research, treatment and support with HIV/AIDS.
Paper here (provisional) Thread here
Fatigue, Biomedicine, Health and Behaviour
''ME/CFS case definitions: effects of requiring a substantial reduction in functioning'' by L. Jason et al.
Looked at data from a large sample of CFS patients and some healthy controls and patients with other chronic illnesses and the different definitions of ME/CFS.
Concludes: ''These results suggest that the requirement of a substantial reduction in functioning may be redundant when case definitions specify that individuals must endorse a set of core symptoms at specified frequency and severity levels.''
Paper here Thread here
Clinical Nursing Research
''Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences'' by Cuesta et al.
A sociological study found the daily experiences of people with these conditions was marked by stigmatisation. The authors conclude: 'The ultimate purpose of nursing care for people with these conditions should be to reduce their vulnerability and exclusion.'
Paper here Thread here
Clinical Child Psychology and Psychiatry
''Depressive symptoms in adolescents with CFS: Are rates higher than in controls and do depressive symptoms affect outcome?'' by Loades, Chalder et al.
This is the third questionnaire based study published recently on the same cohort of CFS and asthma patients. Not a recommendation.
Paper here Thread here
...........................................................
Advocacy action
Occupy ME ''NIH Deadlines'' by Jennie Spotila
About three opportunities for the ME community to engage with NIH.
Blog post here Thread here
USA NIH ''Request for Information: Soliciting Input on How Best to Advance ME/CFS Research.''
The deadline for submissions has been extended to May 1st 2019. The NIH has provided a simple on line form to fill in with your responses under heading such as the most compelling research needs, strategies, barriers etc.
NIH link here Thread here
Germany Petition to the Ministry of Health asking for better funding, clinical care etc for ME/CFS. In German - see thread for translation. People outside Germany can sign.
Thread with link here
.........................................................
Fundraising
David Tuller ''Trial By Error: April is Berkeley Crowdfunding Month!''
Fundraising for another year of David Tuller's Senior Research Fellow post at Berkeley is officially opened this week and runs for the month of April.
Article here Donate here Thread here
................................................................
S4ME social media: Facebook, Twitter and You Tube.
Week beginning 8th April 2019
News
Canada - Research funding The Canadian Institutes of Health Research are funding an ME Network Catalyst Grant of $280,000 per year for up to five years to set up a new research network in ME. There is also up to $75,000 for five years for a project on vascular instability and/or sleep disturbances in ME.
Details here Thread here
....................................................
UK NICE guidelines
Invitation to tender National Guideline Centre (NGC) calls for researchers to tender for involving children/ adolescents and adults with severe symptoms in developing a NICE guideline on ME/CFS. Proposals must be sent by 5pm on 24th April. [Update: Deadline extended 12 noon, 3rd May]
More information here Thread here
Register of interests for the NICE guideline committee has been published. 35 page pdf document. Concerns have been raised about inconsistencies. See thread discussion.
Project documents page here Register of interests here Thread here
First committee meeting minutes have been published.
Topics discussed - diagnostic criteria, diagnostic tests and differential diagnosis. No detail given. There were also several presentations on roles and representation.
Minutes here (pages 37-39) Thread here
.................................................
Trial by Error by David Tuller
My Latest Letter to Bristol
David has been trying to obtain copies of consent forms used in Prof Crawley's school absence pilot study and both the University and clinic say they don't hold the documents. He has now written to the University's director of legal services to raise this and also to ask about the independent investigation into ethical review for this and other studies.
Article here Thread here
..................................................
Articles, blogs, interviews..
UK Royal College of Physicians ''Do you really believe in ME'' by Dr Nina Muirhead.
Very good short article by Dr Muirhead who has had ME since 2016. She describes her experience, the problems with exercise and the NICE guidelines, the parliamentary debate and motion, and the need for better medical education.
Article here Thread here
OMF Interview on YouTube from OMF correspondent Ben H with researcher Ron Davis. They talk about the new CRC Research Centre, metabolic trap, impedance device, RBC deformability and new board members. Duration: 1 hour.
Thread with link to interview here
#MEAction ''Celebrating our wins for ME''.
#MEAction and the Solve ME/CFS Initiative organized the largest US Advocacy Day ever. More than 200 people with ME held 140 meetings with Members of Congress to build support for ME. The article also reports on the young researchers workshop, the NIH conference and #MEAction fellowships. The UK CBT/GET survey and MP Carol Monaghan get a mention too.
Article here Thread here
Australia Architect Anthony Clarke's designs for ME
Architect Antony Clarke has been working on a project for an ME patient. He gave a talk at Emerge's International Symposium about design for health conditions and diseases and has also written about this for ME Australia.
Article here Thread here
ME/CFS Alert
Llewellyn King interviews Sadie Whittaker, Chief Scientific Officer at Solve ME/CFS Initiative. They talk about how Solve ME/CFS Initiative works, advantages of big data, a symptom capture app they're working on, and the need for more research funding.
Duration: 20 minutes
Thread with interview here
#MEAction Meet the Scientist: Professor Anthony Komaroff
Interview with Anthony Komaroff, professor at Harvard Medical School and Senior Physician at Brigham and Women's Hospital in Boston. He also serves on the NIH's advisory council for ME/CFS research.
Interview here Thread here
.........................................
UK - Report on ME services
BACME CFS/ME National Services Survey Feb 2018 (Published March 2019).
42 page document based on a survey of NHS ME/CFS services in 2017. Services are almost entirely run by therapists, with some having doctor input, mainly for diagnosis. Therapies are a locally designed mix of activity management, CBT, GET and other un-evidenced practices. No awareness is shown of lack of objective evidence or of potential harms.
Report here Thread here
..........................................................
NIH Conference
Videos of all the talks from the NIH conference 'Accelerating Research on ME/CFS' held on 4th and 5th April are now available.
Day 1 video here (7 hours) Day 2 video here (8 hours)
Agenda here Thread here
Medscape ''New Findings Elucidate Potentially Treatable aspects of ME/CFS'' by Miriam Tucker.
The article reports on the NIH conference, highlighting PEM and orthostatic intolerance, cardiopulmonary and neurological findings and possible treatments, and evidence that symptoms are not due to deconditioning. Talks by Systrom, Rowe and Bateman are highlighted.
Article here Thread here
..........................................................
Biomedical Research
Diagnostics
''Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Sectional Study'' by Luis Nacul et al.
Blood tests in UK ME/CFS biobank patients were generally normal except for reduced serum creatine kinase in patients with severe ME.
Paper here Thread here
..........................................................
Other Research
International Journal of Environmental Research and Public Health
Comment: ''Medically Unexplained Symptoms (MUS): Faults and Implications'' by Michiel Tack.
Response to a paper by Guo et al on commonalities between medically unexplained conditions. Tack challenges the usefulness of MUS as a diagnostic category, pointing out the problems this raises for both research and treatment.
Thread with link to article here
.............................................................
Advocacy
Spain
Petition against guidelines that include ME where CBT/GET are suggested as treatments.
Petition here Thread here
#MEAction There is now a search tool on #MEAction's website for events around the world in connection to raising awareness between May 5 through May 12.
Website here Thread here
.................................................
Fundraising
David Tuller
''Trial By Error: Crowdfunding, Week 1'' article here
Occupy ME blog: ''Return on Investment II: David Tuller'' by Jennie Spotilahere
UC Berkeley donation link here Thread here
..................................................
Coming Events
Invest in ME Research Conference 14th International ME Conference, London, Friday 31st May 2019. Agenda now available.
Agenda here Register to attend here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
News
Canada - Research funding The Canadian Institutes of Health Research are funding an ME Network Catalyst Grant of $280,000 per year for up to five years to set up a new research network in ME. There is also up to $75,000 for five years for a project on vascular instability and/or sleep disturbances in ME.
Details here Thread here
....................................................
UK NICE guidelines
Invitation to tender National Guideline Centre (NGC) calls for researchers to tender for involving children/ adolescents and adults with severe symptoms in developing a NICE guideline on ME/CFS. Proposals must be sent by 5pm on 24th April. [Update: Deadline extended 12 noon, 3rd May]
More information here Thread here
Register of interests for the NICE guideline committee has been published. 35 page pdf document. Concerns have been raised about inconsistencies. See thread discussion.
Project documents page here Register of interests here Thread here
First committee meeting minutes have been published.
Topics discussed - diagnostic criteria, diagnostic tests and differential diagnosis. No detail given. There were also several presentations on roles and representation.
Minutes here (pages 37-39) Thread here
.................................................
Trial by Error by David Tuller
My Latest Letter to Bristol
David has been trying to obtain copies of consent forms used in Prof Crawley's school absence pilot study and both the University and clinic say they don't hold the documents. He has now written to the University's director of legal services to raise this and also to ask about the independent investigation into ethical review for this and other studies.
Article here Thread here
..................................................
Articles, blogs, interviews..
UK Royal College of Physicians ''Do you really believe in ME'' by Dr Nina Muirhead.
Very good short article by Dr Muirhead who has had ME since 2016. She describes her experience, the problems with exercise and the NICE guidelines, the parliamentary debate and motion, and the need for better medical education.
Article here Thread here
OMF Interview on YouTube from OMF correspondent Ben H with researcher Ron Davis. They talk about the new CRC Research Centre, metabolic trap, impedance device, RBC deformability and new board members. Duration: 1 hour.
Thread with link to interview here
#MEAction ''Celebrating our wins for ME''.
#MEAction and the Solve ME/CFS Initiative organized the largest US Advocacy Day ever. More than 200 people with ME held 140 meetings with Members of Congress to build support for ME. The article also reports on the young researchers workshop, the NIH conference and #MEAction fellowships. The UK CBT/GET survey and MP Carol Monaghan get a mention too.
Article here Thread here
Australia Architect Anthony Clarke's designs for ME
Architect Antony Clarke has been working on a project for an ME patient. He gave a talk at Emerge's International Symposium about design for health conditions and diseases and has also written about this for ME Australia.
Article here Thread here
ME/CFS Alert
Llewellyn King interviews Sadie Whittaker, Chief Scientific Officer at Solve ME/CFS Initiative. They talk about how Solve ME/CFS Initiative works, advantages of big data, a symptom capture app they're working on, and the need for more research funding.
Duration: 20 minutes
Thread with interview here
#MEAction Meet the Scientist: Professor Anthony Komaroff
Interview with Anthony Komaroff, professor at Harvard Medical School and Senior Physician at Brigham and Women's Hospital in Boston. He also serves on the NIH's advisory council for ME/CFS research.
Interview here Thread here
.........................................
UK - Report on ME services
BACME CFS/ME National Services Survey Feb 2018 (Published March 2019).
42 page document based on a survey of NHS ME/CFS services in 2017. Services are almost entirely run by therapists, with some having doctor input, mainly for diagnosis. Therapies are a locally designed mix of activity management, CBT, GET and other un-evidenced practices. No awareness is shown of lack of objective evidence or of potential harms.
Report here Thread here
..........................................................
NIH Conference
Videos of all the talks from the NIH conference 'Accelerating Research on ME/CFS' held on 4th and 5th April are now available.
Day 1 video here (7 hours) Day 2 video here (8 hours)
Agenda here Thread here
Medscape ''New Findings Elucidate Potentially Treatable aspects of ME/CFS'' by Miriam Tucker.
The article reports on the NIH conference, highlighting PEM and orthostatic intolerance, cardiopulmonary and neurological findings and possible treatments, and evidence that symptoms are not due to deconditioning. Talks by Systrom, Rowe and Bateman are highlighted.
Article here Thread here
..........................................................
Biomedical Research
Diagnostics
''Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Sectional Study'' by Luis Nacul et al.
Blood tests in UK ME/CFS biobank patients were generally normal except for reduced serum creatine kinase in patients with severe ME.
Paper here Thread here
..........................................................
Other Research
International Journal of Environmental Research and Public Health
Comment: ''Medically Unexplained Symptoms (MUS): Faults and Implications'' by Michiel Tack.
Response to a paper by Guo et al on commonalities between medically unexplained conditions. Tack challenges the usefulness of MUS as a diagnostic category, pointing out the problems this raises for both research and treatment.
Thread with link to article here
.............................................................
Advocacy
Spain
Petition against guidelines that include ME where CBT/GET are suggested as treatments.
Petition here Thread here
#MEAction There is now a search tool on #MEAction's website for events around the world in connection to raising awareness between May 5 through May 12.
Website here Thread here
.................................................
Fundraising
David Tuller
''Trial By Error: Crowdfunding, Week 1'' article here
Occupy ME blog: ''Return on Investment II: David Tuller'' by Jennie Spotilahere
UC Berkeley donation link here Thread here
..................................................
Coming Events
Invest in ME Research Conference 14th International ME Conference, London, Friday 31st May 2019. Agenda now available.
Agenda here Register to attend here Thread here
................................................
S4ME social media: Facebook, Twitter and You Tube.
Last edited:
Week beginning 15th April 2019
Trial by Error by David Tuller
Crowdfunding, Week 2; and more Sharpe and Chalder
A scathing look at Professors Sharpe and Chalder's recent attempts to defend PACE and promote yet more CBT treatments based on trials with the same methodological problems as PACE, this time for irritable bowel syndrome.
Also reports on crowdfunding - donations close at the end of April.
Article here Crowdfunding link here Thread here
A Reuters Update
David Tuller shares a letter he sent to the Reuters global editor for ethics and standards, Alix Freedman. He raised concerns over the recent Kelland article Reuters published where his professional status and the current state of the PACE debate were misrepresented. Tuller's academic title has since been added, but no other improvements have been made.
Letter here Thread here
.................................................
Articles, blogs, videos, discussions...
Health Rising blog ''David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS'' by Cort Johnson.
David discusses his work, the intransigence of journal authors when confronted by the problems with trials they have published, and his plans for the coming year, including tackling MUS and IAPT in Europe, and the CDC in the USA.
Article here Thread here
2 tired and a toddler blog ''Dismissal of young people with ME by NHS professionals''
The author ran a self selecting survey about NHS care for children and young people with ME and received 151 responses. The results showed a worrying lack of knowledge about ME and support and care from health professionals.
Blog article here Thread here
Occupy ME blog ''I Want To Believe Dr. Collins, But I Don’t'' by Jennie Spotila.
Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the ''Accelerating Research on ME/CFS'' conference. Jennie was not convinced by his warm words about better research funding, having heard much the same from him 8 years ago.
Article here Thread here
Forum thread ''Something in the blood'' by Simon M.
Summarises research findings from 4 different sources using different methods that all indicate something in the blood of ME patients that can affect cell metabolism/mitochondria in ME/CFS and transfer the effect to healthy cells. (1 published, 3 not yet published).
Thread with post here
Journal of Feminist Media studies ''Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers''
Used a 'constructionist feminist perspective'. Found gender stereotypes in a small sample of articles about people with ME in the English print media and concluded this delegitimises the illness in women.
Article here Thread here
Not Just Tired blog ''Living with an unsociable illness''
Article describes some of the challenges ME patients have with social interactions and the costs they bring.
Blog post here Thread here
Mr Topple blog ''Happy Easter. Unless you're living with ME''
Steve Topple writes about many of the challenges and obstacles keeping his girlfriend from a normal Easter holiday due to her serious health condition. She suffers from ME and other health problems.
Blog post here Thread here
.................................................
Other articles of interest
Retraction Watch
''PLOS ONE pulls highly cited mindfulness paper over undeclared ties, other concerns''
A mindfulness systematic review has been retracted. It had methodological flaws and the authors used the article as an 'advertorial' to promote their financial interests. PACE gets a mention over not sharing data for its PLOS paper.
Article here Thread here
PLOS Blogs "5 Tips for Understanding Data in Meta-Analyses", by Hilda Bastian, 2017.
One of Hilda Bastian's series of entertaining and informative articles on understanding research shows how to read the statistics in meta analyses, explaining the types of graphs and analysis used.
Article here Thread here
......................................................
Conference reports and videos
Medscape "Milestone Meeting Highlights NIH Efforts to Combat ME/CFS''
Excellent second article by Miriam Tucker about the recent Accelerating Research on ME/CFS Meeting at NIH. She highlights the need for more research funds and gives a short summary of talks by Unutmaz, Maldonado, Lipkin, Bergquist and Montoya.
Article here Thread here
Symposium website and videos Emerge Australia ME/CFS International Research Symposium 12-15 March 2019, ''The Biomedical Basis, Diagnosis,Treatment and Management'' now available on a dedicated website with the speaker program, speaker biographies, documents and reports, and separate videos of all the talks.
Website here Thread here
................................................
Research
Frontiers in Immunology
''Cellular immune function in ME/CFS'' by Cliff et al.
UK ME/CFS Biobank samples were used to compare ME/CFS with controls. Full paper now released and open access (See item in 1st April News).
Lay summary ''Increased MAIT cell frequency in ME/CFS'' by lead author Dr Jackie Cliff here
Paper here Thread here
Journal of Psychosomatic Research
''Fatigue in Epstein-Barr virus infected adolescents and healthy controls: A prospective multifactorial association study'' by M Pedersen et al.
200 adolescents with EBV were assessed for fatigue and other factors at onset and 6 months and compared with healthy controls. Found strong association between fatigue and negative quality of life and emotions. Autonomic and cognitive findings were associated with fatigue at 6 months. This is linked by the authors with CFS.
Paper here Thread here
Clinical Therapeutics
''Varied Presentation of ME/CFS and the Needs for Classification and Clinician Education: A Case Series'' by E. and M. Martin-Martinez.
Three case studies showed the need for better clinician training in early diagnosis, detailed case history taking, and management.
Paper here Thread here
Physiotherapy
''Cognitive factors are associated with disability and pain, but not fatigue among physiotherapy attendees with persistent pain and fatigue'' by D Thompson et al.
Physios gave questionnaires to patients referred to them with chronic widespread pain, FM and CFS. Association found between self efficacy beliefs and pain/disabilty is (mis)interpreted as determinant and amenable to therapy. Not a recommendation.
Paper here (abstract only) Thread here
............................................................
Coming events
Solve ME/CFS Initiative Webinar "Paths Forward in Research and Advocacy: Reflections on the 2019 NIH ME/CFS Conference", 25th April.
Carol Head, Sadie Whittaker, Emily Taylor in conversation about the recent NIH Conference and what it means for the future of ME/CFS.
Register here Thread here
....................................................
ME Awareness week 5th to 12th May
#Millions Missing events are being planned around the world.
#MEAction sign up here #MEAction list of events here Thread here
OMF As part of their #MayMomentum campaign, OMF has arranged to display a message about ME/CFS on a digital billboard at Times Square in New York on May 12th. Patients are invited to share their photos for an adjacent screen for $33.
Thread with Facebook announcement from OMF here
......................................................
Research recruiting participants
USA New NIH-funded Study: Daily Activity Patterns and Heart Rate Variability in ME/CFS. Stony Brook University. Principal investigator: Fred Friedberg.
6 months wearing activity and heart monitors and filling in questionnaires and weekly online diaries. No face to face visits.
Details here Thread here
SMCI ''The NIH Intramural Post-Infectious ME/CFS Study: A Patient-Study Participant Perspective (Part 1)''
Sanna Stella, who has severe ME, has completed part 1 of the NIH study and will be doing an abbreviated form of the second part this month. She praises the support and care provided. More participants are needed.
Thread with article here
....................................................
Survey and request for information
USA NIH ''Request for Information: Soliciting Input on How Best to Advance ME/CFS Research.'' A reminder - the deadline for submissions is May 1st.
NIH link here Thread here
USA NIH ME/CFS Early Career Investigator Survey aims to find out more about junior researchers needs so professional development support can be improved.
Survey here Thread here
....................................................
S4ME social media: Facebook, Twitter and You Tube.
Trial by Error by David Tuller
Crowdfunding, Week 2; and more Sharpe and Chalder
A scathing look at Professors Sharpe and Chalder's recent attempts to defend PACE and promote yet more CBT treatments based on trials with the same methodological problems as PACE, this time for irritable bowel syndrome.
Also reports on crowdfunding - donations close at the end of April.
Article here Crowdfunding link here Thread here
A Reuters Update
David Tuller shares a letter he sent to the Reuters global editor for ethics and standards, Alix Freedman. He raised concerns over the recent Kelland article Reuters published where his professional status and the current state of the PACE debate were misrepresented. Tuller's academic title has since been added, but no other improvements have been made.
Letter here Thread here
.................................................
Articles, blogs, videos, discussions...
Health Rising blog ''David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS'' by Cort Johnson.
David discusses his work, the intransigence of journal authors when confronted by the problems with trials they have published, and his plans for the coming year, including tackling MUS and IAPT in Europe, and the CDC in the USA.
Article here Thread here
2 tired and a toddler blog ''Dismissal of young people with ME by NHS professionals''
The author ran a self selecting survey about NHS care for children and young people with ME and received 151 responses. The results showed a worrying lack of knowledge about ME and support and care from health professionals.
Blog article here Thread here
Occupy ME blog ''I Want To Believe Dr. Collins, But I Don’t'' by Jennie Spotila.
Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the ''Accelerating Research on ME/CFS'' conference. Jennie was not convinced by his warm words about better research funding, having heard much the same from him 8 years ago.
Article here Thread here
Forum thread ''Something in the blood'' by Simon M.
Summarises research findings from 4 different sources using different methods that all indicate something in the blood of ME patients that can affect cell metabolism/mitochondria in ME/CFS and transfer the effect to healthy cells. (1 published, 3 not yet published).
Thread with post here
Journal of Feminist Media studies ''Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers''
Used a 'constructionist feminist perspective'. Found gender stereotypes in a small sample of articles about people with ME in the English print media and concluded this delegitimises the illness in women.
Article here Thread here
Not Just Tired blog ''Living with an unsociable illness''
Article describes some of the challenges ME patients have with social interactions and the costs they bring.
Blog post here Thread here
Mr Topple blog ''Happy Easter. Unless you're living with ME''
Steve Topple writes about many of the challenges and obstacles keeping his girlfriend from a normal Easter holiday due to her serious health condition. She suffers from ME and other health problems.
Blog post here Thread here
.................................................
Other articles of interest
Retraction Watch
''PLOS ONE pulls highly cited mindfulness paper over undeclared ties, other concerns''
A mindfulness systematic review has been retracted. It had methodological flaws and the authors used the article as an 'advertorial' to promote their financial interests. PACE gets a mention over not sharing data for its PLOS paper.
Article here Thread here
PLOS Blogs "5 Tips for Understanding Data in Meta-Analyses", by Hilda Bastian, 2017.
One of Hilda Bastian's series of entertaining and informative articles on understanding research shows how to read the statistics in meta analyses, explaining the types of graphs and analysis used.
Article here Thread here
......................................................
Conference reports and videos
Medscape "Milestone Meeting Highlights NIH Efforts to Combat ME/CFS''
Excellent second article by Miriam Tucker about the recent Accelerating Research on ME/CFS Meeting at NIH. She highlights the need for more research funds and gives a short summary of talks by Unutmaz, Maldonado, Lipkin, Bergquist and Montoya.
Article here Thread here
Symposium website and videos Emerge Australia ME/CFS International Research Symposium 12-15 March 2019, ''The Biomedical Basis, Diagnosis,Treatment and Management'' now available on a dedicated website with the speaker program, speaker biographies, documents and reports, and separate videos of all the talks.
Website here Thread here
................................................
Research
Frontiers in Immunology
''Cellular immune function in ME/CFS'' by Cliff et al.
UK ME/CFS Biobank samples were used to compare ME/CFS with controls. Full paper now released and open access (See item in 1st April News).
Lay summary ''Increased MAIT cell frequency in ME/CFS'' by lead author Dr Jackie Cliff here
Paper here Thread here
Journal of Psychosomatic Research
''Fatigue in Epstein-Barr virus infected adolescents and healthy controls: A prospective multifactorial association study'' by M Pedersen et al.
200 adolescents with EBV were assessed for fatigue and other factors at onset and 6 months and compared with healthy controls. Found strong association between fatigue and negative quality of life and emotions. Autonomic and cognitive findings were associated with fatigue at 6 months. This is linked by the authors with CFS.
Paper here Thread here
Clinical Therapeutics
''Varied Presentation of ME/CFS and the Needs for Classification and Clinician Education: A Case Series'' by E. and M. Martin-Martinez.
Three case studies showed the need for better clinician training in early diagnosis, detailed case history taking, and management.
Paper here Thread here
Physiotherapy
''Cognitive factors are associated with disability and pain, but not fatigue among physiotherapy attendees with persistent pain and fatigue'' by D Thompson et al.
Physios gave questionnaires to patients referred to them with chronic widespread pain, FM and CFS. Association found between self efficacy beliefs and pain/disabilty is (mis)interpreted as determinant and amenable to therapy. Not a recommendation.
Paper here (abstract only) Thread here
............................................................
Coming events
Solve ME/CFS Initiative Webinar "Paths Forward in Research and Advocacy: Reflections on the 2019 NIH ME/CFS Conference", 25th April.
Carol Head, Sadie Whittaker, Emily Taylor in conversation about the recent NIH Conference and what it means for the future of ME/CFS.
Register here Thread here
....................................................
ME Awareness week 5th to 12th May
#Millions Missing events are being planned around the world.
#MEAction sign up here #MEAction list of events here Thread here
OMF As part of their #MayMomentum campaign, OMF has arranged to display a message about ME/CFS on a digital billboard at Times Square in New York on May 12th. Patients are invited to share their photos for an adjacent screen for $33.
Thread with Facebook announcement from OMF here
......................................................
Research recruiting participants
USA New NIH-funded Study: Daily Activity Patterns and Heart Rate Variability in ME/CFS. Stony Brook University. Principal investigator: Fred Friedberg.
6 months wearing activity and heart monitors and filling in questionnaires and weekly online diaries. No face to face visits.
Details here Thread here
SMCI ''The NIH Intramural Post-Infectious ME/CFS Study: A Patient-Study Participant Perspective (Part 1)''
Sanna Stella, who has severe ME, has completed part 1 of the NIH study and will be doing an abbreviated form of the second part this month. She praises the support and care provided. More participants are needed.
Thread with article here
....................................................
Survey and request for information
USA NIH ''Request for Information: Soliciting Input on How Best to Advance ME/CFS Research.'' A reminder - the deadline for submissions is May 1st.
NIH link here Thread here
USA NIH ME/CFS Early Career Investigator Survey aims to find out more about junior researchers needs so professional development support can be improved.
Survey here Thread here
....................................................
S4ME social media: Facebook, Twitter and You Tube.
Week beginning 22nd April 2019
In the media
Scotland The Herald ''Belle & Sebastian frontman Stuart Murdoch on ME battle''
Article about upcoming #MillionsMissing event on 12th of May in Glasgow. Interview with Stuart Murdoch, scientist Prof. Chris Ponting and #MEAction volunteer Gillian Grant.
Article here Thread here
Canada "White Rock woman shares her struggle with horrendous fatigue"
Peace Arch News article about ME patient Alma Pauw highlights the lack of research into ME in Canada and MillionsMissing Canada's upcoming awareness campaign in May.
Article here Thread here
UK i News ''Teen housebound by ME threatened with fine by school for being ‘truant’ – now benefits assessor says she’s not in enough pain'' by Claudia Tanner.
Tells the story of Georgia Whyard, ill with ME at 12, now 18, and her ongoing struggles with the education, medical, benefits and housing providers.
Article here Thread here
UK The Times "All these years on, I still have a relapse if I do too much. I can't go on a treadmill or go for a jog"
Former Scottish football player Davie Provan about living with ME since 1985.
Article here (paywalled) Thread here
.................................................................
Trial by Error by David Tuller
Jennie Spotila on Collins’ NIH Talk
Highlights the need for greater NIH funding for ME research and reproduces Jennie Spotila's blog post.
Article here Thread here
................................................................
Articles, videos, blogs, meetings ...
HealthInsightUK "The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out.."
Journalist Jerome Burne writes about the PACE trial and the scientific criticism it has met from academics and patients.
Article here Thread here
UK CMRC Minutes April meeting. Brief updates on working groups and plans to hold the next CMRC conference in March 2020.
Minutes here Thread here
#MEAction: "Unseen: Black people living with ME" by Wilhelmina Jenkins.
Wilhelmina, an African American woman who has had ME since 1983, has found a lack of awareness that all ethnic groups are affected by ME, despite Leonard Jason's research evidence. She expresses concern that this has led to under-diagnosis and consequent increased suffering.
Article here Thread here
Norway Summary from a recent ME conference with lectures from, amongst others, researchers prof. Ola D. Saugstad, prof. Karl Johan Tronstad, Ingrid G. Rekeland and Katarina Lien.
Thread with link to google translation here
..........................................................
Research and researcher news
Solve ME/CFS Initiative Ramsay Research Awards 2019. Applications open on May 1st.
Information here Thread here
UK ME/CFS Biobank has provided samples for Professor Duncan Baird, geneticist at Cardiff University to look at telomeres and ageing in immune cells in ME.
Article here Thread here
UK Oxford University Jamie Strong who has ME and who works in Karl Morton's ME research team has been nominated for a National Diversity Award as a positive role model (disability). Votes are invited.
Details here Thread here
..........................................................
Biomedical Research
BMC Molecular Medicine
''Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from CFS/ME'' Cabanas et al.
A very small study used a different method to validate previous findings by the same Griffith University team. They conclude this ''further helps to establish TRPM3 channels as a prognostic marker and/or a potential therapeutic target for CFS/ME.''
Paper here Thread here
...............................................
Research perspective article
Frontiers in Pediatrics
Perspective article: ''Advances in ME/CFS: Past, Present and Future'' by Kenneth Friedman.
Free full text now available. This is the introductory article to a themed edition of the journal by its guest editor. The article gives a history of CFS in the USA and the missteps and lack of funding. It uses research and treatment of HIV/AIDS as a comparison.
Paper here Thread here
...........................................................
Psychosocial Research Critique
Health Psychology Open
''The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model'' by Geraghty et al.
The authors examine the model, described as ''a hypothesis that the illness is perpetuated by patients’ irrational beliefs and avoidance behaviours''. Describes how the model developed, and finds multiple flaws in the research and a lack of valid evidence to support either the theoretical basis or the modified version of CBT treatment based on the model. Conclude that neither model nor treatment is fit for purpose.
Paper here Thread here
...............................................................
Psychosocial research - not recommended
Journal of Psychosomatic Research
''Prediction of long-term outcome after cognitive behavioral therapy for chronic fatigue syndrome'' by Knoop et al.
The study used questionnaires for 4 CBT for CFS studies (2 cohort, 2 RCT) at the same centre to look for factors predicting worse fatigue and physical functioning at long term follow up (up to 10 years). They appear to conclude that positive thinking and a sense of control over symptoms leads to improvement. Not a recommendation.
Paper here Thread here
Patient Education and Counseling
''“Understand your illness and your needs”: Assessment-informed patient education for people with multiple functional somatic syndromes'' by Pedersen et al.
Danish clinic cohort uncontrolled study. Patients with more than one of FM, CFS, IBS etc. re-diagnosed with Bodily Distress Syndrome and taught BPS model. Small 'improvements' on some questionnaires such as illness worry and beliefs. Not a recommendation.
Paper here Thread here
.........................................................
ME Awareness week
#MillionsMissing A conference call for UK event organisers was held on 18th April. Reports from past events and plans for this year were discussed. #MEAction have published a report. Over 25 UK events are planned.
Report here Thread here
..........................................................
Advocacy action
Australia ME Australia article with suggested template letters for writing to election candidates asking for commitment to more research funding for ME.
Article here Thread here
Petition
Emerge Australia has launched a new petition asking the Australian Minister for Families and Social Services, and the National Disability Insurance Agency, to work with pwME to develop benefit assessor guidelines, to stop requiring pwME to do CBT/GET, and to reclassify ME/CFS as a permanent condition. Anyone can sign.
Petition here Thread here
.........................................................
Fundraising
David Tuller
Trial by Error: Crowdfunding week 3 Matching Grant
Crowdfunding appeal by UC Berkeley to fund David Tuller's post ends on 30th April (Tuesday). The appeal received a generous $5000 matching donation this week. Over $90,000 of the target $95,000 has been raised so far with just two days to go.
Article here Donate link here Thread here
.........................................................
S4ME social media: Facebook, Twitter and You Tube.
In the media
Scotland The Herald ''Belle & Sebastian frontman Stuart Murdoch on ME battle''
Article about upcoming #MillionsMissing event on 12th of May in Glasgow. Interview with Stuart Murdoch, scientist Prof. Chris Ponting and #MEAction volunteer Gillian Grant.
Article here Thread here
Canada "White Rock woman shares her struggle with horrendous fatigue"
Peace Arch News article about ME patient Alma Pauw highlights the lack of research into ME in Canada and MillionsMissing Canada's upcoming awareness campaign in May.
Article here Thread here
UK i News ''Teen housebound by ME threatened with fine by school for being ‘truant’ – now benefits assessor says she’s not in enough pain'' by Claudia Tanner.
Tells the story of Georgia Whyard, ill with ME at 12, now 18, and her ongoing struggles with the education, medical, benefits and housing providers.
Article here Thread here
UK The Times "All these years on, I still have a relapse if I do too much. I can't go on a treadmill or go for a jog"
Former Scottish football player Davie Provan about living with ME since 1985.
Article here (paywalled) Thread here
.................................................................
Trial by Error by David Tuller
Jennie Spotila on Collins’ NIH Talk
Highlights the need for greater NIH funding for ME research and reproduces Jennie Spotila's blog post.
Article here Thread here
................................................................
Articles, videos, blogs, meetings ...
HealthInsightUK "The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out.."
Journalist Jerome Burne writes about the PACE trial and the scientific criticism it has met from academics and patients.
Article here Thread here
UK CMRC Minutes April meeting. Brief updates on working groups and plans to hold the next CMRC conference in March 2020.
Minutes here Thread here
#MEAction: "Unseen: Black people living with ME" by Wilhelmina Jenkins.
Wilhelmina, an African American woman who has had ME since 1983, has found a lack of awareness that all ethnic groups are affected by ME, despite Leonard Jason's research evidence. She expresses concern that this has led to under-diagnosis and consequent increased suffering.
Article here Thread here
Norway Summary from a recent ME conference with lectures from, amongst others, researchers prof. Ola D. Saugstad, prof. Karl Johan Tronstad, Ingrid G. Rekeland and Katarina Lien.
Thread with link to google translation here
..........................................................
Research and researcher news
Solve ME/CFS Initiative Ramsay Research Awards 2019. Applications open on May 1st.
Information here Thread here
UK ME/CFS Biobank has provided samples for Professor Duncan Baird, geneticist at Cardiff University to look at telomeres and ageing in immune cells in ME.
Article here Thread here
UK Oxford University Jamie Strong who has ME and who works in Karl Morton's ME research team has been nominated for a National Diversity Award as a positive role model (disability). Votes are invited.
Details here Thread here
..........................................................
Biomedical Research
BMC Molecular Medicine
''Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from CFS/ME'' Cabanas et al.
A very small study used a different method to validate previous findings by the same Griffith University team. They conclude this ''further helps to establish TRPM3 channels as a prognostic marker and/or a potential therapeutic target for CFS/ME.''
Paper here Thread here
...............................................
Research perspective article
Frontiers in Pediatrics
Perspective article: ''Advances in ME/CFS: Past, Present and Future'' by Kenneth Friedman.
Free full text now available. This is the introductory article to a themed edition of the journal by its guest editor. The article gives a history of CFS in the USA and the missteps and lack of funding. It uses research and treatment of HIV/AIDS as a comparison.
Paper here Thread here
...........................................................
Psychosocial Research Critique
Health Psychology Open
''The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model'' by Geraghty et al.
The authors examine the model, described as ''a hypothesis that the illness is perpetuated by patients’ irrational beliefs and avoidance behaviours''. Describes how the model developed, and finds multiple flaws in the research and a lack of valid evidence to support either the theoretical basis or the modified version of CBT treatment based on the model. Conclude that neither model nor treatment is fit for purpose.
Paper here Thread here
...............................................................
Psychosocial research - not recommended
Journal of Psychosomatic Research
''Prediction of long-term outcome after cognitive behavioral therapy for chronic fatigue syndrome'' by Knoop et al.
The study used questionnaires for 4 CBT for CFS studies (2 cohort, 2 RCT) at the same centre to look for factors predicting worse fatigue and physical functioning at long term follow up (up to 10 years). They appear to conclude that positive thinking and a sense of control over symptoms leads to improvement. Not a recommendation.
Paper here Thread here
Patient Education and Counseling
''“Understand your illness and your needs”: Assessment-informed patient education for people with multiple functional somatic syndromes'' by Pedersen et al.
Danish clinic cohort uncontrolled study. Patients with more than one of FM, CFS, IBS etc. re-diagnosed with Bodily Distress Syndrome and taught BPS model. Small 'improvements' on some questionnaires such as illness worry and beliefs. Not a recommendation.
Paper here Thread here
.........................................................
ME Awareness week
#MillionsMissing A conference call for UK event organisers was held on 18th April. Reports from past events and plans for this year were discussed. #MEAction have published a report. Over 25 UK events are planned.
Report here Thread here
..........................................................
Advocacy action
Australia ME Australia article with suggested template letters for writing to election candidates asking for commitment to more research funding for ME.
Article here Thread here
Petition
Emerge Australia has launched a new petition asking the Australian Minister for Families and Social Services, and the National Disability Insurance Agency, to work with pwME to develop benefit assessor guidelines, to stop requiring pwME to do CBT/GET, and to reclassify ME/CFS as a permanent condition. Anyone can sign.
Petition here Thread here
.........................................................
Fundraising
David Tuller
Trial by Error: Crowdfunding week 3 Matching Grant
Crowdfunding appeal by UC Berkeley to fund David Tuller's post ends on 30th April (Tuesday). The appeal received a generous $5000 matching donation this week. Over $90,000 of the target $95,000 has been raised so far with just two days to go.
Article here Donate link here Thread here
.........................................................
S4ME social media: Facebook, Twitter and You Tube.