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News in Brief - January 2019
- Thread starter Trish
- Start date
Week beginning 31st December 2018
Newsletters, lectures
The ME Global Chronicle - extensive and informative international newsletter including items on research, politics and advocacy. Released Dec. 30th
Newsletter here Thread here
Norway - Two lectures from a seminar in Nov. 2018 by the Norwegian ME Association with the ME researchers prof. Karl Johan Tronstad and prof. Benedicte Lie are available on YouTube. Lectures are in Norwegian.
Thread with links and English summary of prof. Lie's lecture here
David Tuller interview from the Norway meeting is now available to watch. 20 minutes in English with Norwegian subtitles. David answers questions about the flaws in the PACE trial and why it has been so hard to get it, and the treatments based on it, overturned. Also discusses the false descriptions of challenges to the trial as anti-scientific and vexatious.
Thread with link to video here
......................................................
Biomedical Research
Clinical Hemorheology and Microcirculation
''Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome'' by Anand Ramasubramanian et al. (including Ron Davis).
Full paper now published. Small study concludes 'Our observations suggest that RBC transport through microcapillaries may explain, at least in part, the ME/CFS phenotype, and promises to be a novel first-pass diagnostic test.'
Paper here Thread here
Psychiatry Investigation
''Multidimensional Comparison of Cancer-Related Fatigue and Chronic Fatigue Syndrome: The Role of Psychophysiological Markers'' by Park et al.
Found comparable levels of psychological variables and fatigue in CFS and CRF. Differences between the groups on heart rate variability, EEG and C-reactive protein suggest different pathophysiological mechanisms underlie CFS and CRF, and frontal EEG as a possible biomarker for CFS.
Abstract here Thread here
.........................................................
Diagnosis
Frontiers in Paediatrics - Perspective article
''The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary'' by Geraghty and Adeniji.
Abstract only. Provisionally accepted for later publication. Study of epidemiology of ME/CFS shows wide variation in prevalence due to too loose definition of ME/CFS. The paper will include recommendations for better clinical diagnosis and epidemiology.
Abstract here Thread here
..........................................................
Coming events
Australia International Research Symposium, Geelong, 12-15 March 2019.
''ME/CFS. The biological basis, diagnosis, treatment, and management''.
Hosted by Emerge, supported by government funding. A special issue of the journal Diagnostics will include the speaker submissions and other accepted manuscripts.
Details here Thread here
...................................................
Newsletters, lectures
The ME Global Chronicle - extensive and informative international newsletter including items on research, politics and advocacy. Released Dec. 30th
Newsletter here Thread here
Norway - Two lectures from a seminar in Nov. 2018 by the Norwegian ME Association with the ME researchers prof. Karl Johan Tronstad and prof. Benedicte Lie are available on YouTube. Lectures are in Norwegian.
Thread with links and English summary of prof. Lie's lecture here
David Tuller interview from the Norway meeting is now available to watch. 20 minutes in English with Norwegian subtitles. David answers questions about the flaws in the PACE trial and why it has been so hard to get it, and the treatments based on it, overturned. Also discusses the false descriptions of challenges to the trial as anti-scientific and vexatious.
Thread with link to video here
......................................................
Biomedical Research
Clinical Hemorheology and Microcirculation
''Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome'' by Anand Ramasubramanian et al. (including Ron Davis).
Full paper now published. Small study concludes 'Our observations suggest that RBC transport through microcapillaries may explain, at least in part, the ME/CFS phenotype, and promises to be a novel first-pass diagnostic test.'
Paper here Thread here
Psychiatry Investigation
''Multidimensional Comparison of Cancer-Related Fatigue and Chronic Fatigue Syndrome: The Role of Psychophysiological Markers'' by Park et al.
Found comparable levels of psychological variables and fatigue in CFS and CRF. Differences between the groups on heart rate variability, EEG and C-reactive protein suggest different pathophysiological mechanisms underlie CFS and CRF, and frontal EEG as a possible biomarker for CFS.
Abstract here Thread here
.........................................................
Diagnosis
Frontiers in Paediatrics - Perspective article
''The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary'' by Geraghty and Adeniji.
Abstract only. Provisionally accepted for later publication. Study of epidemiology of ME/CFS shows wide variation in prevalence due to too loose definition of ME/CFS. The paper will include recommendations for better clinical diagnosis and epidemiology.
Abstract here Thread here
..........................................................
Coming events
Australia International Research Symposium, Geelong, 12-15 March 2019.
''ME/CFS. The biological basis, diagnosis, treatment, and management''.
Hosted by Emerge, supported by government funding. A special issue of the journal Diagnostics will include the speaker submissions and other accepted manuscripts.
Details here Thread here
...................................................
Last edited:
Week beginning 7th January 2019
News
UK 'Action for ME hosts Spotlight Training' - a telephone Q and A session for the DWP (which deals with state unemployment and disability benefits). AfME has also provided the DWP staff with their 40 page 'See ME Toolkit' which focuses on rehabilitation and getting people with ME back to work. Serious concerns about this material are raised on the thread.
AfME article here See ME Toolkit here Thread here
Cochrane Caroline Struthers has received an underwhelming response from the Cochrane editor in chief, David Tovey, to her complaint about the Exercise as treatment for patients with chronic fatigue syndrome review. Includes Struthers' description of subjective outcomes in unblinded trials as ‘terrible methodology’, which is dismissed by Tovey as "simply an opinion".
Struther's complaint and Tovey's reply here Thread here
.......................................................
Articles, blogs, meetings etc.
Lucibee's Blog ''Why use of subjective measures in clinical trials can be problematic''. Excellent article explains objective and subjective measures, and the problems with using subjective measures in unblinded trials.
Blog post here Thread here
UK Forward ME group minutes from November 2018. Includes discussion with a representative of the Health Ombudsman and a planned survey of patients to help the NICE guideline committee (see below).
Minutes here Thread here
STAT Opinion: ''The NIH is thwarting research on a poorly understood yet serious condition'' by Jennifer Spotila.
Describes the lack of sufficient research funding for ME/CFS by NIH and 5 obstacles that scientists must navigate on the path to funding that place higher hurdles for research on ME/CFS than other conditions.
Article here Thread here
..........................................................
Trial by Error by David Tuller
My Letter to LP's Study's Senior Author
The letter's subject heading: “Retrospective Registration and Outcome-Swapping in Lightning Process Trial.” Addressed to senior author, Alan Montgomery, a professor of medical statistics and clinical trials.
Copies were also sent to the relevant journal editors, 3 MP's and 3 members of the NICE guideline committee. The letter explains the problems with the trial, the background of LP and its creator, and suggests the senior author should take responsibility and the paper should be retracted.
Article with letter here Thread here
More Thoughts on the Interferon Study
Article about the Science Media Centre's involvement in the recent big press coverage of Pariante's study which claimed post interferon treatment fatigue was a proxy for CFS. Tuller contrasts Pariante's study with Leonard Jason's prospective study of students who develop CFS following EBV infection.
Article here Thread here
....................................................
From the media
Norway
A regional newspaper has written about the petition against the national competence service for CFS/ME and their biopsychosocial approach to ME. The petition has over 6,300 signatures and will soon be delivered to the Ministry of Health and Care services.
Thread with translation of article here
Ireland
The Journal: Opinion: 'Nobody should have to live like this - I need more care to meet my basic needs' by Corina Duyn.
Corina has had severe ME for many years and is not being provided the basic care she needs because the agency in Ireland does not recognise ME as a disability.
Article here Thread here
.......................................................
Useful Resources
UK Very useful resources on ME/CFS for GP's and patients developed by the Suffolk patient and carers group with medical advice from Prof Jonathan Edwards.
Items: Referral booklet for GP's and patients; Key Information; What patients say helps.
Website with links to resources here Thread here
.........................................................
Research News
MECFSnet website is now live. This is the website for the ME/CFS Research Network set up for collaboration between the research hubs funded by the USA NIH, including Columbia and Cornell Universities, Jackson Labs and RTI Data Coordination Center as well as NIH itself.
Website here Thread here
The website also lists studies currently recruiting participants. See item below.
Frontiers in Paediatrics Special issue
Research topic ''Advances in ME/CFS Research and Clinical Care''
Individual papers are being published on line as they become available. The complete paper issue of the journal will be published later.
Details here Thread here with links to published papers and thread discussions.
.........................................................
Biomedical Research
Brain, Imaging and Behaviour
''Evidence of widespread metabolite abnormalities in ME/CFS: assessment with whole-brain magnetic resonance spectroscopy'' by Younger et al.
Small study using female patients and controls found significant biochemical differences in several regions of the brain that correlated with fatigue. Also found raised temperatures in some regions that were not correlated with body temperature or perfusion. Conclusion: ME/CFS may involve brain inflammation.
Paper here Thread here
........................................................
Other research
Frontiers in Neurology
"Neuroinflammation and cytokines in ME/CFS: A critical review of research methods" by VanElzakker et al
A review on neuroinflammation and methods used for measuring it. Recommends more emphasis in future on potential mechanisms driving symptoms rather than on descriptive studies. Full paper now published.
Paper here Thread here
Frontiers in Paediatrics
''Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning'' by Valdez et al.
Full paper now published. Open access.
Paper here Thread here
Open Access Emergency Medicine
''Chronic Fatigue Syndrome in the emergency department'' - Baraniuk et al.
A pilot online survey (n=282) exploring common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters. Points to orthostatic intolerance as the most frequent acute cause for visits and suggests using a questionnaire to screen CFS patients in addition to more education and guidance for ED staff about CFS.
Paper here Thread here
Health Expectations
"Hope, disappointment and perseverance: Reflections of people with ME/CFS and Multiple Sclerosis participating in biomedical research. A qualitative focus group study" by Lacerda et al
28 participants at the UK ME/CFS Biobank (UKMED) with either ME or MS participated in focus groups. The study gives insights into the emotional, social and practical importance of research to patients with ME or MS as well as suggesting specific research topics and arguing for a more collaborative research culture.
Paper here Thread here
.........................................................
Study recruitment
USA As described above, the NIH funded network of centres studying ME are recruiting for studies, listed below:
Bateman Horne Center: 'Advancing Biomarker Research'
Details here Thread here
Cornell University: Neuroimaging study.
Details here Thread here
Cornell University: Neuroimmune study. Also needs healthy inactive controls.
Details here Thread here
Columbia University: Exercise tolerance testing.
Details here Thread here
USA NIH is seeking volunteers with ME/CFS to participate in a focus group which will be used to learn more about Post Exertional Malaise (PEM). They also want to learn from experiences with Cardio Pulmonary Exercise Testing (CPET).
Article here Thread here
USA Stanford - Neuroendocrine study - looking for female ME patients aged of 18-45 not taking oral birth control for in-depth look at the different hormone systems.
Thread here
.....................................................................
Surveys
UK Forward ME Group CBT/GET Survey - Tell NICE your experiences.
Survey closes 31st January 2019. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
...........................
MEA The ME Association January survey designed by a medical student. The data will be used in a student report and may be published or taken to conference. The survey asks 'What are the most important things a GP needs to know about M.E.?' You can participate from any country.
More info and link to survey here Thread here
............................................................
News
UK 'Action for ME hosts Spotlight Training' - a telephone Q and A session for the DWP (which deals with state unemployment and disability benefits). AfME has also provided the DWP staff with their 40 page 'See ME Toolkit' which focuses on rehabilitation and getting people with ME back to work. Serious concerns about this material are raised on the thread.
AfME article here See ME Toolkit here Thread here
Cochrane Caroline Struthers has received an underwhelming response from the Cochrane editor in chief, David Tovey, to her complaint about the Exercise as treatment for patients with chronic fatigue syndrome review. Includes Struthers' description of subjective outcomes in unblinded trials as ‘terrible methodology’, which is dismissed by Tovey as "simply an opinion".
Struther's complaint and Tovey's reply here Thread here
.......................................................
Articles, blogs, meetings etc.
Lucibee's Blog ''Why use of subjective measures in clinical trials can be problematic''. Excellent article explains objective and subjective measures, and the problems with using subjective measures in unblinded trials.
Blog post here Thread here
UK Forward ME group minutes from November 2018. Includes discussion with a representative of the Health Ombudsman and a planned survey of patients to help the NICE guideline committee (see below).
Minutes here Thread here
STAT Opinion: ''The NIH is thwarting research on a poorly understood yet serious condition'' by Jennifer Spotila.
Describes the lack of sufficient research funding for ME/CFS by NIH and 5 obstacles that scientists must navigate on the path to funding that place higher hurdles for research on ME/CFS than other conditions.
Article here Thread here
..........................................................
Trial by Error by David Tuller
My Letter to LP's Study's Senior Author
The letter's subject heading: “Retrospective Registration and Outcome-Swapping in Lightning Process Trial.” Addressed to senior author, Alan Montgomery, a professor of medical statistics and clinical trials.
Copies were also sent to the relevant journal editors, 3 MP's and 3 members of the NICE guideline committee. The letter explains the problems with the trial, the background of LP and its creator, and suggests the senior author should take responsibility and the paper should be retracted.
Article with letter here Thread here
More Thoughts on the Interferon Study
Article about the Science Media Centre's involvement in the recent big press coverage of Pariante's study which claimed post interferon treatment fatigue was a proxy for CFS. Tuller contrasts Pariante's study with Leonard Jason's prospective study of students who develop CFS following EBV infection.
Article here Thread here
....................................................
From the media
Norway
A regional newspaper has written about the petition against the national competence service for CFS/ME and their biopsychosocial approach to ME. The petition has over 6,300 signatures and will soon be delivered to the Ministry of Health and Care services.
Thread with translation of article here
Ireland
The Journal: Opinion: 'Nobody should have to live like this - I need more care to meet my basic needs' by Corina Duyn.
Corina has had severe ME for many years and is not being provided the basic care she needs because the agency in Ireland does not recognise ME as a disability.
Article here Thread here
.......................................................
Useful Resources
UK Very useful resources on ME/CFS for GP's and patients developed by the Suffolk patient and carers group with medical advice from Prof Jonathan Edwards.
Items: Referral booklet for GP's and patients; Key Information; What patients say helps.
Website with links to resources here Thread here
.........................................................
Research News
MECFSnet website is now live. This is the website for the ME/CFS Research Network set up for collaboration between the research hubs funded by the USA NIH, including Columbia and Cornell Universities, Jackson Labs and RTI Data Coordination Center as well as NIH itself.
Website here Thread here
The website also lists studies currently recruiting participants. See item below.
Frontiers in Paediatrics Special issue
Research topic ''Advances in ME/CFS Research and Clinical Care''
Individual papers are being published on line as they become available. The complete paper issue of the journal will be published later.
Details here Thread here with links to published papers and thread discussions.
.........................................................
Biomedical Research
Brain, Imaging and Behaviour
''Evidence of widespread metabolite abnormalities in ME/CFS: assessment with whole-brain magnetic resonance spectroscopy'' by Younger et al.
Small study using female patients and controls found significant biochemical differences in several regions of the brain that correlated with fatigue. Also found raised temperatures in some regions that were not correlated with body temperature or perfusion. Conclusion: ME/CFS may involve brain inflammation.
Paper here Thread here
........................................................
Other research
Frontiers in Neurology
"Neuroinflammation and cytokines in ME/CFS: A critical review of research methods" by VanElzakker et al
A review on neuroinflammation and methods used for measuring it. Recommends more emphasis in future on potential mechanisms driving symptoms rather than on descriptive studies. Full paper now published.
Paper here Thread here
Frontiers in Paediatrics
''Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning'' by Valdez et al.
Full paper now published. Open access.
Paper here Thread here
Open Access Emergency Medicine
''Chronic Fatigue Syndrome in the emergency department'' - Baraniuk et al.
A pilot online survey (n=282) exploring common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters. Points to orthostatic intolerance as the most frequent acute cause for visits and suggests using a questionnaire to screen CFS patients in addition to more education and guidance for ED staff about CFS.
Paper here Thread here
Health Expectations
"Hope, disappointment and perseverance: Reflections of people with ME/CFS and Multiple Sclerosis participating in biomedical research. A qualitative focus group study" by Lacerda et al
28 participants at the UK ME/CFS Biobank (UKMED) with either ME or MS participated in focus groups. The study gives insights into the emotional, social and practical importance of research to patients with ME or MS as well as suggesting specific research topics and arguing for a more collaborative research culture.
Paper here Thread here
.........................................................
Study recruitment
USA As described above, the NIH funded network of centres studying ME are recruiting for studies, listed below:
Bateman Horne Center: 'Advancing Biomarker Research'
Details here Thread here
Cornell University: Neuroimaging study.
Details here Thread here
Cornell University: Neuroimmune study. Also needs healthy inactive controls.
Details here Thread here
Columbia University: Exercise tolerance testing.
Details here Thread here
USA NIH is seeking volunteers with ME/CFS to participate in a focus group which will be used to learn more about Post Exertional Malaise (PEM). They also want to learn from experiences with Cardio Pulmonary Exercise Testing (CPET).
Article here Thread here
USA Stanford - Neuroendocrine study - looking for female ME patients aged of 18-45 not taking oral birth control for in-depth look at the different hormone systems.
Thread here
.....................................................................
Surveys
UK Forward ME Group CBT/GET Survey - Tell NICE your experiences.
Survey closes 31st January 2019. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
Survey here Thread here
...........................
MEA The ME Association January survey designed by a medical student. The data will be used in a student report and may be published or taken to conference. The survey asks 'What are the most important things a GP needs to know about M.E.?' You can participate from any country.
More info and link to survey here Thread here
............................................................
Week beginning 14th January 2019
Headline News
UK Parliamentary Debate this Thursday. Contact your MP.
House of Commons backbench debate on ME/CFS will take place on Thursday 24th January led by Carol Monaghan.
Motion to be debated and voted on:
ME Association article with links to contact your MP here
Parliamentary briefing here
Article in The Canary here Thread here
............................................................
News
Belgium - Extension of the ME/CFS convention.
@Michiel Tack has summarized the Belgian assessment report. On the positive side, the report highlights biomedical findings and acknowledges problems with the PACE-trial, GET and the oxford criteria. The negative side is that the authors cling on to CBT, despite their results being rather poor.
Thread with summary here
Invest in ME and European ME Alliance are facilitating the formation of the European ME Clinicians Council (EMEC)
It will bring together clinicians in the field of ME and form a network that can improve the knowledge of clinicians in Europe and act as a focal point for healthcare agencies, doctors and media outlets who wish to learn more from experienced clinicians.
Presentation from Invest in ME here Thread here
............................................................
Letters, talks ...
UK - Open letter to AfME @Trish has written a personal open letter to Action for ME asking them to withdraw their document ''Support, empower and employ people with M.E. A toolkit for professionals''.
Concerns are detailed about inaccuracies and the emphasis on rehabilitation and goal setting, especially as the document has been circulated to DWP staff who deal with unemployment and disability benefits.
AfME have replied saying they will not withdraw the document but it will be reviewed as part of their ongoing reviews process.
AfME 'Toolkit' here Thread with letter here Reply from AfME here
David Tuller's lecture: The PACE Trial: "Thing of beauty or Pile of Crap" from a seminar in Norway in November 2018 is now available on YouTube.
Thread with link to video here
................................................
Biomedical Research
Nature Genetics
''Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes'' by Lakhani et al.
Data from twins suggests a large genetic component in ME/CFS and very little environmental influence (with some caveats).
Paper here Thread here
International Journal of Immunopathology and Pharmacology
''Changes in the transcriptome of circulating immune cells of a New Zealand cohort with ME/CFS'' by Sweetman, Tate et al.
Small study showed molecular changes including relating to inflammation, cellular stress response, metabolism, mitochondria and circadian clock.
Paper here Thread here
Clinical Therapeutics
"Relationship Between Exercise-induced Oxidative Stress Changes and Parasympathetic Activity in CFS: An Observational Study in Patients and Healthy Subjects" - Andrea Polli et al
Data from 36 participants (women with CFS and healthy controls) performing exercise test. Oxidative stress showed an association with pain symptoms in people with ME/CFS, but no exercise-induced changes in oxidative stress were found. The change in parasympathetic activity following exercise partially accounted for the change in oxidative stress in healthy controls.
Paper here Thread here
.......................................................
Other research
Frontiers in Pediatrics
''Onset patterns and course of ME/CFS'' by Chu, Montoya et al
Results from survey with 150 ME patients (Fukuda criteria) from USA. Most findings consistent with prior studies, but also explores new topics including evolution of symptoms.
Article here Thread here
......................................................
Psychosocial news
Denmark - Journal of Psychosomatic Research
Letter to the editor by director of Danish Health Authority where he argues that it makes sense for the Danish Health Authority to accept the diagnostic umbrella term of "functional disorders". ME belongs under this umbrella according to him. Not a recommendation.
Letter to the editor here Thread here
.......................................................
Coming Events
Norway ME-conference March 26-27
"A health political, biomedical ME conference" with Norwegian lecturers.
Website to conference here Thread here
NIH conference April 4-5th 'Accelerating Research on ME/CFS'
The goal is to present high-quality studies of ME/CFS to better understand the state of science and help drive the field forward. For scientists, clinicians, patients and other ME/CFS stakeholders. Conference will be webcast and publicly available.
More information here Thread here
.......................................................
Headline News
UK Parliamentary Debate this Thursday. Contact your MP.
House of Commons backbench debate on ME/CFS will take place on Thursday 24th January led by Carol Monaghan.
Motion to be debated and voted on:
#MEAction: links for contacting your MP here article here
ME Association article with links to contact your MP here
Parliamentary briefing here
Article in The Canary here Thread here
............................................................
News
Belgium - Extension of the ME/CFS convention.
@Michiel Tack has summarized the Belgian assessment report. On the positive side, the report highlights biomedical findings and acknowledges problems with the PACE-trial, GET and the oxford criteria. The negative side is that the authors cling on to CBT, despite their results being rather poor.
Thread with summary here
Invest in ME and European ME Alliance are facilitating the formation of the European ME Clinicians Council (EMEC)
It will bring together clinicians in the field of ME and form a network that can improve the knowledge of clinicians in Europe and act as a focal point for healthcare agencies, doctors and media outlets who wish to learn more from experienced clinicians.
Presentation from Invest in ME here Thread here
............................................................
Letters, talks ...
UK - Open letter to AfME @Trish has written a personal open letter to Action for ME asking them to withdraw their document ''Support, empower and employ people with M.E. A toolkit for professionals''.
Concerns are detailed about inaccuracies and the emphasis on rehabilitation and goal setting, especially as the document has been circulated to DWP staff who deal with unemployment and disability benefits.
AfME have replied saying they will not withdraw the document but it will be reviewed as part of their ongoing reviews process.
AfME 'Toolkit' here Thread with letter here Reply from AfME here
David Tuller's lecture: The PACE Trial: "Thing of beauty or Pile of Crap" from a seminar in Norway in November 2018 is now available on YouTube.
Thread with link to video here
................................................
Biomedical Research
Nature Genetics
''Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes'' by Lakhani et al.
Data from twins suggests a large genetic component in ME/CFS and very little environmental influence (with some caveats).
Paper here Thread here
International Journal of Immunopathology and Pharmacology
''Changes in the transcriptome of circulating immune cells of a New Zealand cohort with ME/CFS'' by Sweetman, Tate et al.
Small study showed molecular changes including relating to inflammation, cellular stress response, metabolism, mitochondria and circadian clock.
Paper here Thread here
Clinical Therapeutics
"Relationship Between Exercise-induced Oxidative Stress Changes and Parasympathetic Activity in CFS: An Observational Study in Patients and Healthy Subjects" - Andrea Polli et al
Data from 36 participants (women with CFS and healthy controls) performing exercise test. Oxidative stress showed an association with pain symptoms in people with ME/CFS, but no exercise-induced changes in oxidative stress were found. The change in parasympathetic activity following exercise partially accounted for the change in oxidative stress in healthy controls.
Paper here Thread here
.......................................................
Other research
Frontiers in Pediatrics
''Onset patterns and course of ME/CFS'' by Chu, Montoya et al
Results from survey with 150 ME patients (Fukuda criteria) from USA. Most findings consistent with prior studies, but also explores new topics including evolution of symptoms.
Article here Thread here
......................................................
Psychosocial news
Denmark - Journal of Psychosomatic Research
Letter to the editor by director of Danish Health Authority where he argues that it makes sense for the Danish Health Authority to accept the diagnostic umbrella term of "functional disorders". ME belongs under this umbrella according to him. Not a recommendation.
Letter to the editor here Thread here
.......................................................
Coming Events
Norway ME-conference March 26-27
"A health political, biomedical ME conference" with Norwegian lecturers.
Website to conference here Thread here
NIH conference April 4-5th 'Accelerating Research on ME/CFS'
The goal is to present high-quality studies of ME/CFS to better understand the state of science and help drive the field forward. For scientists, clinicians, patients and other ME/CFS stakeholders. Conference will be webcast and publicly available.
More information here Thread here
.......................................................
Week beginning 21st January 2019
.........................................................
UK Parliament - Backbench Debate on ME - 24th January 2019
Articles in advance of the debate:
David Tuller Trial By Error: Carol Monaghan Scores Another Parliamentary Debate
In addition to the issues raised in the motion, Tuller hopes University of Bristol and BMJ will be called out during the debate (they weren't).
Article here Thread here
#MEAction Stuart Murdoch's open letter urges politicians to show their support.
Open letter here Thread here #post 61
....................
The debate was led by MP's Carol Monaghan, Nicky Morgan and Alex Chalk.
It was shorter than planned as previous debates had overrun, so many speeches were curtailed. About 40 MP's were present and 28 spoke in support of the motion.
Speakers all supported more research funding and many told stories of constituents with lives blighted by ME. Issues raised included problems with diagnosis, care, benefits, housing, being disbelieved, lack of support, harms from GET/CBT, the PACE trial, NICE guidelines, medical education, and the particular problems faced by children with ME including child protection issues.
No speaker supported the biopsychosocial model of ME or CBT/GET treatments.
The minister responding on behalf of the government, Steve Brine, made no commitments except to facilitate a meeting between the proposers of the motion and the leader of the Royal College of GP's.
The motion was carried:
Watch the debate here Read the transcript in Hansard here Thread here
ME organisations report on the debate:
ME Research UK here #MEAction here
ME Association Press release here Action for ME here
............................................................
Scottish Parliament Public Petitions Committee
The continuing petitions meeting held on 24th January included the ME petition 'Review treatment of people with ME in Scotland'. The petitions committee questioned the Cabinet Secretary for Health and Sport, the Chief Medical Officer and the Chief Scientist.
The minister recognised ME as a physical illness that needs more funding and support. People with ME in Scotland are encouraged to contribute to the current consultation on a draft action plan on neurological conditions.
There was no commitment to remove CBT/GET - on the grounds that 'some people find them helpful' and patients can opt out if they are not helping. The problem of many Scottish doctors not believing ME exists is to be tackled by offering Action for ME training modules. Best practice for supporting pwME and the need for research funding were discussed.
Watch the meeting here Transcript here Meeting Agenda here Thread here
Press Association article in The Scotsman and other papers 'Health Secretary pledges more support for people with ME' here
.........................................................
Letters, articles, interviews, blogs, webinars ...
S4ME Letter to NICE Concerning Professor Chris Burton, NICE ME/CFS guideline committee appointee.
Members of this forum wrote and voted to send a letter to NICE expressing concern about Burton's suitability to serve on the committee given his classification of CFS as MUS, and conflicts of interest concerning his current research methodology. The letter included a list of questions.
A reply from the committee chair, Peter Barry says he cannot comment but our concerns are noted.
Thread with letter and reply here
UK Blog by Spoonseeker ''Coming down the Line''.
Important and troubling issues are raised for the future diagnosis and treatment of ME in the UK. Suggests the NICE Guidelines for ME might be sidelined, with pwME being included instead under the umbrella term MUS /FND (Functional Neurological Disorder), and treated with CBT/GET. Other changes to management of long term conditions include groups facilitated by non medics, and cuts in drug prescriptions as part of NHS cuts.
Blog post here Thread here
UK The ME Show ME Association series of podcasts with interviewer Gary Burgess.
Series Two Episode 1 with Dr. Charles Shepherd will be available on 28th January. Series One is also still available.
MEA article with links to podcasts here Thread here
The Medical Independent ''It's all in the mind'' by George Winter.
Questions the scientific basis of psychiatry and wonders about its future. Looks at the history of 'evidence based psychiatry' and psychiatry's excursion into new territories such as ME with the BPS model, PACE and its discrediting.
Article here Thread here
ME Australia blog by Sasha Nimmo: 'Meet the Scientists: Prof Don Staines'.
Staines answers questions about his career and his biomedical ME research.
Blog post here Thread here
Webinar: Introducing IAFME The Director of the International Alliance for ME, Alexandra Heumber, based in Geneva, explained the purpose of the organisation and its objectives and responded to questions. IAFME was set up by Action for ME.
AfME article about IAFME here Thread here
USA lecture Ann W. Caldwell Lecture on ME at MGH Institute of Health Professions
was held on 15th January. An article 'Students hear of little known illness' with link to the video is now available.
Article and video here Thread here
..................................................................
Trial By Error by David Tuller
My Six-Month Review
David Tuller's crowdfunding from last April has covered his half-time position at Berkeley since July 1. Now as six months has passed, Tuller gives an impressive summary of articles and open letters he's written, travels he's done and lectures he's given. Tuller is about to decide whether to crowdfund again this spring and continue for another year.
Review here Thread here
S4ME Summary for Week of January 14th
In agreement with S4ME, David Tuller will from now on share the forum's weekly news in brief on virology blog.
News summary at virology.ws here Thread here
Action For ME’s Employment Advice
Action for ME, the largest UK ME charity, has made some steps in the right direction in distancing itself from PACE and Prof. Crawley's work. But there are still problems with some of AfME's materials. David describes the problems of the employment advice in the 'Toolkit for Professionals' and calls it 'a light form of biopsychosocial mumbo-jumbo'. He publishes the letter to AfME from Trish Davis asking for the Toolkit to be withdrawn, and AfME's disappointing response.
Article here Thread here Thread with discussion of the letter here
....................................................................
Research - Diagnosis and treatment
Frontiers in Paediatrics - Perspective articles
''The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary'' by Geraghty and Adeniji.
Full paper now published, open access.
Study of epidemiology of ME/CFS shows wide variation in prevalence due to too loose definition of ME/CFS, particularly Oxford definition and other definitions that exclude PEM in UK studies. This also leads to problems interpreting the outcomes of clinical trials such as FITNET. The article includes recommendations for better clinical diagnosis, epidemiology, clinical trial cohort selection and implications for treatment.
Paper here Thread here
''Initiating Care of a Patient With ME/CFS'' by Charles Lapp
Describes the process of initial diagnosis and testing, further testing such as sleep studies where indicated, symptomatic treatments for pain, sleep etc. and ongoing care including diagnosing and treating co-morbidities and helping with disability claims. A helpful guide to good practice for primary care doctors.
Paper here Thread here
..........................................................
Advocacy Action
Australia The Australian Government National Health and Medical Research Council (NHMRC) ME/CFS Advisory Committee draft report has been released for public consultation. The report covers research and clinical care.
A reminder that feedback submissions close on February 18, 2019. You don't have to be in Australia to respond.
Details here Thread here
UK Forward ME Group CBT/GET Survey - Tell NICE your experiences.
Final reminder - the survey closes 31st January. The survey is designed for adults and children who have been diagnosed with ME, CFS or PVFS and who have undertaken or were offered CBT or GET in the UK since 2007. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
Survey here Thread here
..........................................................
Coming events
USA: ME/CFS Advocacy Week April 2nd to 5th 2019.
Includes DC Lobby Day when advocates meet members of congress and staff on April 2nd and 3rd, and NIH “Accelerating Research on ME/CFS” Conference on April 4th and 5th.
Solve ME/CFS Initiative details here Thread here
........................................................
.........................................................
UK Parliament - Backbench Debate on ME - 24th January 2019
Articles in advance of the debate:
David Tuller Trial By Error: Carol Monaghan Scores Another Parliamentary Debate
In addition to the issues raised in the motion, Tuller hopes University of Bristol and BMJ will be called out during the debate (they weren't).
Article here Thread here
#MEAction Stuart Murdoch's open letter urges politicians to show their support.
Open letter here Thread here #post 61
....................
The debate was led by MP's Carol Monaghan, Nicky Morgan and Alex Chalk.
It was shorter than planned as previous debates had overrun, so many speeches were curtailed. About 40 MP's were present and 28 spoke in support of the motion.
Speakers all supported more research funding and many told stories of constituents with lives blighted by ME. Issues raised included problems with diagnosis, care, benefits, housing, being disbelieved, lack of support, harms from GET/CBT, the PACE trial, NICE guidelines, medical education, and the particular problems faced by children with ME including child protection issues.
No speaker supported the biopsychosocial model of ME or CBT/GET treatments.
The minister responding on behalf of the government, Steve Brine, made no commitments except to facilitate a meeting between the proposers of the motion and the leader of the Royal College of GP's.
The motion was carried:
That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.
Watch the debate here Read the transcript in Hansard here Thread here
ME organisations report on the debate:
ME Research UK here #MEAction here
ME Association Press release here Action for ME here
............................................................
Scottish Parliament Public Petitions Committee
The continuing petitions meeting held on 24th January included the ME petition 'Review treatment of people with ME in Scotland'. The petitions committee questioned the Cabinet Secretary for Health and Sport, the Chief Medical Officer and the Chief Scientist.
The minister recognised ME as a physical illness that needs more funding and support. People with ME in Scotland are encouraged to contribute to the current consultation on a draft action plan on neurological conditions.
There was no commitment to remove CBT/GET - on the grounds that 'some people find them helpful' and patients can opt out if they are not helping. The problem of many Scottish doctors not believing ME exists is to be tackled by offering Action for ME training modules. Best practice for supporting pwME and the need for research funding were discussed.
Watch the meeting here Transcript here Meeting Agenda here Thread here
Press Association article in The Scotsman and other papers 'Health Secretary pledges more support for people with ME' here
.........................................................
Letters, articles, interviews, blogs, webinars ...
S4ME Letter to NICE Concerning Professor Chris Burton, NICE ME/CFS guideline committee appointee.
Members of this forum wrote and voted to send a letter to NICE expressing concern about Burton's suitability to serve on the committee given his classification of CFS as MUS, and conflicts of interest concerning his current research methodology. The letter included a list of questions.
A reply from the committee chair, Peter Barry says he cannot comment but our concerns are noted.
Thread with letter and reply here
UK Blog by Spoonseeker ''Coming down the Line''.
Important and troubling issues are raised for the future diagnosis and treatment of ME in the UK. Suggests the NICE Guidelines for ME might be sidelined, with pwME being included instead under the umbrella term MUS /FND (Functional Neurological Disorder), and treated with CBT/GET. Other changes to management of long term conditions include groups facilitated by non medics, and cuts in drug prescriptions as part of NHS cuts.
Blog post here Thread here
UK The ME Show ME Association series of podcasts with interviewer Gary Burgess.
Series Two Episode 1 with Dr. Charles Shepherd will be available on 28th January. Series One is also still available.
MEA article with links to podcasts here Thread here
The Medical Independent ''It's all in the mind'' by George Winter.
Questions the scientific basis of psychiatry and wonders about its future. Looks at the history of 'evidence based psychiatry' and psychiatry's excursion into new territories such as ME with the BPS model, PACE and its discrediting.
Article here Thread here
ME Australia blog by Sasha Nimmo: 'Meet the Scientists: Prof Don Staines'.
Staines answers questions about his career and his biomedical ME research.
Blog post here Thread here
Webinar: Introducing IAFME The Director of the International Alliance for ME, Alexandra Heumber, based in Geneva, explained the purpose of the organisation and its objectives and responded to questions. IAFME was set up by Action for ME.
AfME article about IAFME here Thread here
USA lecture Ann W. Caldwell Lecture on ME at MGH Institute of Health Professions
was held on 15th January. An article 'Students hear of little known illness' with link to the video is now available.
Article and video here Thread here
..................................................................
Trial By Error by David Tuller
My Six-Month Review
David Tuller's crowdfunding from last April has covered his half-time position at Berkeley since July 1. Now as six months has passed, Tuller gives an impressive summary of articles and open letters he's written, travels he's done and lectures he's given. Tuller is about to decide whether to crowdfund again this spring and continue for another year.
Review here Thread here
S4ME Summary for Week of January 14th
In agreement with S4ME, David Tuller will from now on share the forum's weekly news in brief on virology blog.
News summary at virology.ws here Thread here
Action For ME’s Employment Advice
Action for ME, the largest UK ME charity, has made some steps in the right direction in distancing itself from PACE and Prof. Crawley's work. But there are still problems with some of AfME's materials. David describes the problems of the employment advice in the 'Toolkit for Professionals' and calls it 'a light form of biopsychosocial mumbo-jumbo'. He publishes the letter to AfME from Trish Davis asking for the Toolkit to be withdrawn, and AfME's disappointing response.
Article here Thread here Thread with discussion of the letter here
....................................................................
Research - Diagnosis and treatment
Frontiers in Paediatrics - Perspective articles
''The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary'' by Geraghty and Adeniji.
Full paper now published, open access.
Study of epidemiology of ME/CFS shows wide variation in prevalence due to too loose definition of ME/CFS, particularly Oxford definition and other definitions that exclude PEM in UK studies. This also leads to problems interpreting the outcomes of clinical trials such as FITNET. The article includes recommendations for better clinical diagnosis, epidemiology, clinical trial cohort selection and implications for treatment.
Paper here Thread here
''Initiating Care of a Patient With ME/CFS'' by Charles Lapp
Describes the process of initial diagnosis and testing, further testing such as sleep studies where indicated, symptomatic treatments for pain, sleep etc. and ongoing care including diagnosing and treating co-morbidities and helping with disability claims. A helpful guide to good practice for primary care doctors.
Paper here Thread here
..........................................................
Advocacy Action
Australia The Australian Government National Health and Medical Research Council (NHMRC) ME/CFS Advisory Committee draft report has been released for public consultation. The report covers research and clinical care.
A reminder that feedback submissions close on February 18, 2019. You don't have to be in Australia to respond.
Details here Thread here
UK Forward ME Group CBT/GET Survey - Tell NICE your experiences.
Final reminder - the survey closes 31st January. The survey is designed for adults and children who have been diagnosed with ME, CFS or PVFS and who have undertaken or were offered CBT or GET in the UK since 2007. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
Survey here Thread here
..........................................................
Coming events
USA: ME/CFS Advocacy Week April 2nd to 5th 2019.
Includes DC Lobby Day when advocates meet members of congress and staff on April 2nd and 3rd, and NIH “Accelerating Research on ME/CFS” Conference on April 4th and 5th.
Solve ME/CFS Initiative details here Thread here
........................................................
Last edited:
Week beginning 28th January 2019
News
UK AfME Action for ME has withdrawn from its website the document ''Support, empower and employ people with M.E. A toolkit for professionals''. Problems with the document were highlighted by David Tuller last week. It is being reviewed and updated by AfME.
David Tuller's article here Threads here and here
.............................................................
In the media
BBC Radio Scotland Kaye Adams interviewed Dr Charles Shepherd, patient advocate Stuart Murdoch and MP Carol Monaghan about living with ME, the harm done by GET, the Parliamentary debate, and why there has been so little progress in finding an effective treatment.
Audio link here times 1:17:45-1:48:30 Thread here
Norway Critical article about a recent study claiming a mindfulness-based CBT intervention programme made 80% of ME patients improve. An ME patient who underwent the treatment and deteriorated is interviewed, as is prof. Saugstad and the lead author Stubhaug who also is behind the treatment in the study.
Article here (Norwegian) Thread about study and link to google translation herepost #110
............................................................
Clinician training - examples of problematic resources
UK BACME The British Association for CFS/ME is the organisation for doctors and therapists treating patients with CFS/ME. Their 'Working Group on Severe CFS/ME' has produced a 'Shared Clinical Practice Document'.
It has a reasonable description of severe ME, but the advice on management is rehabilitation focused with the assumption that patients should be encouraged to gradually increase activity. They give no evidence to support this assumption (there is none). Not a recommendation.
Document here Thread here
UK RCGP METRIC course
The Royal College of General Practitioners has an on-line training course for GP's about ME called METRIC (ME: Education, Training and Resources in Primary Care) written by Professor Chew-Graham, updated last year. It describes ME as a mental illness using the 'Dysregulation hypothesis' based on the harmful effects of too much rest. Recommends CBT/GET and 'pragmatic rehabilitation'. Uses the FINE trial and PACE as 'evidence'. Not a recommendation.
PDF of METRIC here Thread here
..............................................................
Trial by Error by David Tuller
Steve Brine's Troubling Claim in Parliamentary Debate on ME
Steve Brine MP cited in the recent Parliamentary ME debate a training program for GPs developed by the RCGP's (see above item). Tuller shows how intertwined the course is in the biopsychosocial model and built on wrong assumptions about ME.
Article here Thread here
My Letter to Professor Chew-Graham About METRIC
David Tuller has sent an email to professor Carolyn Chew-Graham, lead author of METRIC (see above item). The letter includes critique of METRIC and the FINE trial and asks for clarification regarding claims about NHS expenditure on "MUS".
Letter here Thread here post #31
Bristol Investigating Crawley Papers
David Tuller has received a confirmation from the HRA, an agency overseeing approvals for research in England, that there is an ongoing investigating of some of Professor Crawley's work. The article also includes an email exchange between David Tuller and BMJ's editorial director Fiona Godlee about questions he's raised concerning Crawley's papers published in BMJ journals.
Article here Thread here
A Bit More About Bristol's Investigation
More details about the investigation (see item above). It's an independent investigation of how a research ethics committee (REC) opinion linked to a service evaluation, could be used to exempt several research papers from ethical reviews. A few of them were published in BMJ Open.
Article here Thread here post #22
Some Thoughts About an Upcoming Article
David Tuller has been contacted by a journalist from a major news organisation who seems to be working on a story about his work. Background information, questions from the journalist and Tuller's answers are shared.
Article here Thread here
The Reporter's Questions for Professor Racaniello
Professor Racaniello has been contacted by the same journalist (see item above). The questions and answers are shared.
Article here Thread here post #31
...........................................
Blogs, articles, podcasts, minutes ...
CMRC Minutes UK CFS/ME Research Collaborative Executive Board Meeting, 16 January 2019.
A paper has been produced as 'a vision for the field' for the February meeting, including input from the Patient Advisory Group.
Current CMRC working groups are on medical education, omics and big data, mitochondrial biology, immunology and imaging.
There are plans to work with other fatiguing disease groups to research fatigue.
Minutes here Thread here
The ME Show
First episode of second series of this popular podcast with Gary Burgess. It contains an interview from the ME Association's medical advisor Dr Charles Shepherd. They talk about the Parliamentary debate on ME, ME in the media, the review of NICE guidelines, recent research and the importance of international conferences and increased government funding.
Information about the podcast and episode here Thread here
ME Research UK Breakthrough magazine, Autumn 2018, now available.
Includes articles about planned research by Jarred Younger to track peripheral immune cells and see whether they break the blood–brain barrier and infiltrate the brain; and Julia Newton's exploration of the mechanisms underlying abnormal muscle fatigue in ME.
PDF here Thread here
Spoonseeker blog 'Going Back in Time…'. More about the troubling inclusion of ME in the FND/MUS category and the use of psychologically based treatments. Highlights the document 'Guidelines for Commissioners of Services with Medically Unexplained Symptoms' already being implemented in the UK.
Guidelines document here Blog article here Thread here
.......................................................
Psychosocial research
Journal of Behavioural Medicine
''Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS'' by Chalder et al.
Questionnaire based study of 51 AYME members with self reported severe CFS, 43 met Oxford criteria. Data was collected twice a few months apart. Associations found are used to infer fear avoidance beliefs contribute to fatigue and poor social adjustment. Not a recommendation.
Paper here Thread here
Mindfulness
''Self-Compassion and Adherence in Five Medical Samples: the Role of Stress'', 2018, Sirois and Hirsch.
Includes CFS data from on-line survey. Found some association between dispositional self-compassion, perceived lowered stress and adherence to treatment.
Not a recommendation.
Paper here Thread here
....................................................
Other Research
CM CHI Conference on Human Factors in Computing Systems 2019
''Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome'' by Davies et al.
Computer science researchers learn from CFS patients about the type of self management apps that might be useful.
Conference Abstract here Thread here
......................................................
Advocacy
UK - #MEAction Parliamentary Debate Follow-Up
#MEAction has made a short online survey to learn more about outreach to politicians. They ask everyone in the UK who contacted their MP ahead of the Parliamentary debate to fill out the form.
Survey here Thread here
.........................................................
News
UK AfME Action for ME has withdrawn from its website the document ''Support, empower and employ people with M.E. A toolkit for professionals''. Problems with the document were highlighted by David Tuller last week. It is being reviewed and updated by AfME.
David Tuller's article here Threads here and here
.............................................................
In the media
BBC Radio Scotland Kaye Adams interviewed Dr Charles Shepherd, patient advocate Stuart Murdoch and MP Carol Monaghan about living with ME, the harm done by GET, the Parliamentary debate, and why there has been so little progress in finding an effective treatment.
Audio link here times 1:17:45-1:48:30 Thread here
Norway Critical article about a recent study claiming a mindfulness-based CBT intervention programme made 80% of ME patients improve. An ME patient who underwent the treatment and deteriorated is interviewed, as is prof. Saugstad and the lead author Stubhaug who also is behind the treatment in the study.
Article here (Norwegian) Thread about study and link to google translation herepost #110
............................................................
Clinician training - examples of problematic resources
UK BACME The British Association for CFS/ME is the organisation for doctors and therapists treating patients with CFS/ME. Their 'Working Group on Severe CFS/ME' has produced a 'Shared Clinical Practice Document'.
It has a reasonable description of severe ME, but the advice on management is rehabilitation focused with the assumption that patients should be encouraged to gradually increase activity. They give no evidence to support this assumption (there is none). Not a recommendation.
Document here Thread here
UK RCGP METRIC course
The Royal College of General Practitioners has an on-line training course for GP's about ME called METRIC (ME: Education, Training and Resources in Primary Care) written by Professor Chew-Graham, updated last year. It describes ME as a mental illness using the 'Dysregulation hypothesis' based on the harmful effects of too much rest. Recommends CBT/GET and 'pragmatic rehabilitation'. Uses the FINE trial and PACE as 'evidence'. Not a recommendation.
PDF of METRIC here Thread here
..............................................................
Trial by Error by David Tuller
Steve Brine's Troubling Claim in Parliamentary Debate on ME
Steve Brine MP cited in the recent Parliamentary ME debate a training program for GPs developed by the RCGP's (see above item). Tuller shows how intertwined the course is in the biopsychosocial model and built on wrong assumptions about ME.
Article here Thread here
My Letter to Professor Chew-Graham About METRIC
David Tuller has sent an email to professor Carolyn Chew-Graham, lead author of METRIC (see above item). The letter includes critique of METRIC and the FINE trial and asks for clarification regarding claims about NHS expenditure on "MUS".
Letter here Thread here post #31
Bristol Investigating Crawley Papers
David Tuller has received a confirmation from the HRA, an agency overseeing approvals for research in England, that there is an ongoing investigating of some of Professor Crawley's work. The article also includes an email exchange between David Tuller and BMJ's editorial director Fiona Godlee about questions he's raised concerning Crawley's papers published in BMJ journals.
Article here Thread here
A Bit More About Bristol's Investigation
More details about the investigation (see item above). It's an independent investigation of how a research ethics committee (REC) opinion linked to a service evaluation, could be used to exempt several research papers from ethical reviews. A few of them were published in BMJ Open.
Article here Thread here post #22
Some Thoughts About an Upcoming Article
David Tuller has been contacted by a journalist from a major news organisation who seems to be working on a story about his work. Background information, questions from the journalist and Tuller's answers are shared.
Article here Thread here
The Reporter's Questions for Professor Racaniello
Professor Racaniello has been contacted by the same journalist (see item above). The questions and answers are shared.
Article here Thread here post #31
...........................................
Blogs, articles, podcasts, minutes ...
CMRC Minutes UK CFS/ME Research Collaborative Executive Board Meeting, 16 January 2019.
A paper has been produced as 'a vision for the field' for the February meeting, including input from the Patient Advisory Group.
Current CMRC working groups are on medical education, omics and big data, mitochondrial biology, immunology and imaging.
There are plans to work with other fatiguing disease groups to research fatigue.
Minutes here Thread here
The ME Show
First episode of second series of this popular podcast with Gary Burgess. It contains an interview from the ME Association's medical advisor Dr Charles Shepherd. They talk about the Parliamentary debate on ME, ME in the media, the review of NICE guidelines, recent research and the importance of international conferences and increased government funding.
Information about the podcast and episode here Thread here
ME Research UK Breakthrough magazine, Autumn 2018, now available.
Includes articles about planned research by Jarred Younger to track peripheral immune cells and see whether they break the blood–brain barrier and infiltrate the brain; and Julia Newton's exploration of the mechanisms underlying abnormal muscle fatigue in ME.
PDF here Thread here
Spoonseeker blog 'Going Back in Time…'. More about the troubling inclusion of ME in the FND/MUS category and the use of psychologically based treatments. Highlights the document 'Guidelines for Commissioners of Services with Medically Unexplained Symptoms' already being implemented in the UK.
Guidelines document here Blog article here Thread here
.......................................................
Psychosocial research
Journal of Behavioural Medicine
''Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS'' by Chalder et al.
Questionnaire based study of 51 AYME members with self reported severe CFS, 43 met Oxford criteria. Data was collected twice a few months apart. Associations found are used to infer fear avoidance beliefs contribute to fatigue and poor social adjustment. Not a recommendation.
Paper here Thread here
Mindfulness
''Self-Compassion and Adherence in Five Medical Samples: the Role of Stress'', 2018, Sirois and Hirsch.
Includes CFS data from on-line survey. Found some association between dispositional self-compassion, perceived lowered stress and adherence to treatment.
Not a recommendation.
Paper here Thread here
....................................................
Other Research
CM CHI Conference on Human Factors in Computing Systems 2019
''Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome'' by Davies et al.
Computer science researchers learn from CFS patients about the type of self management apps that might be useful.
Conference Abstract here Thread here
......................................................
Advocacy
UK - #MEAction Parliamentary Debate Follow-Up
#MEAction has made a short online survey to learn more about outreach to politicians. They ask everyone in the UK who contacted their MP ahead of the Parliamentary debate to fill out the form.
Survey here Thread here
.........................................................