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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Week beginning 4th March 2019
News - events this coming week
ME/CFS International Research Symposium
12th - 15th March, Australia.
Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online.
Schedule pdf here Watch live here or here Thread here
Denmark There will be an ME debate in the Danish Parliament on 12th March.
The Minister of Health says "ME is a functional disorder. There is evidence of a positive effect of graded exercise and of cognitive behavioral therapy...'' #MillionsMissing Denmark are asking for support. The newspaper Politiken has covered the situation for ME patients in Denmark.
Tweet here Thread here (with links to the Politiken-articles)
.....................................................
Other news
UK Hospital and Outreach Education has been given a half million pound grant for 90 children with long term illnesses including ME to 'attend' school using AV1 robots.
Article here Thread here
Scotland A forum member has updated us on the Action for ME 'Educate ME' project. Evidence had been collected showing there is an unmet need for out of school education for sick children in Scotland and for education of teachers about ME.
Thread here
Cochrane Review Update ''Exercise Therapy for CFS'' by Larun et al.
The authors now have until the end of May 2019 to amend the review.
Update here Thread here
..........................................................
Trial by Error by David Tuller
''Who Has the School Study Documents?''
David Tuller and Prof Steven Lubet have tried to access documents relating to the school absence study from Bristol University and the specialist service for pediatric CFS/ME in Bath using Freedom of Information requests but both deny having the documents.
Article here Thread here
"Stupid Studies"
Tuller comments and summarises critique on two recent psychosocial studies. First is a mindfulness-based CBT intervention program for CFS/ME from Norway. Second a study on perfectionism and beliefs about emotions in adolescents with CFS and their parents by Trudie Chalder.
Article here Thread here
..........................................................
Articles, podcasts, blogs, radio, updates etc
The ME Show Series 2 Episode Six
Gary Burgess speaks to Dr Sarah Myhill. She explains her theories and experience of treating people with ME, as well as her battles with the General Medical Council. Thread discussion includes concerns about her work.
MEA article with links to podcasts here Thread here
Journal of Medical Ethics
Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” by Diane O'Leary.
O'Leary asks why bioethics is not involved, arguing that the emphasis on psychosocial management of CFS is denying patients appropriate medical care and support.
Article here Thread here
The Jackson Laboratory ME/CFS Research
Interview with Courtney Gunter, Program Manager for The Jackson Laboratory's (JAX) ME/CFS Collaborative Research Center. Among data analysis, management and coordination between collaborators, she also runs their ME/CFS blog.
Interview here Thread here
Medium "How Chronic Illness Can Influence Suicide Risk" by Dr. Lily Chu
The article states that up to 50% of suicides may not be due to mental health conditions and gives ME/CFS as an example of a physical condition that may increase suicide risk. Offers general information about ME and advice for hotline staff and volunteers on how to help callers affected by ME/CFS.
Article here Thread here
Blog article 'Beauty in the Dark' by Ryan Prior.
A moving description of Ryan's visit to Anil van der Zee who has very severe ME.
Article here Thread here
BBC Radio Bristol - John Darvall
Informative 20 minutes about ME. Interview by John Darvall with ME patient and #MEAction activist Liz and Clare Ogden from AfME.
Radio programme here (starts 2.11.00) Thread here
............................................................................
Current research
The MED study, Sweden
"ME/CFS and associated conditions and improved handling, investigation and diagnostics (the MED Study)", 2018 to 2021, by Bertilsson at Bragée Clinics in collaboration with Karolinska Institutet.
A neurological study using body symptom maps, neurological tests and MRI scans to investigate possible cranio-cervical nerve involvement in ME/CFS, whiplash, post concussion and fibromyalgia.
Clinic website here Thread here
Cardiff University Impact of ME/CFS on patients & their family
Wames (Welsh Association of ME & CFS Support) informs of a pilot study about the impact of ME/CFS on quality of life for patients and their families. ME-patients and families are invited to participate by filling out two questionnaires.
More info here Thread here
..............................................................
Other research
Health Care for Women International
"Dismissing chronic illness: A qualitative analysis of negative health care experiences" by Leonard A. Jason et al
541 survey participants with ME/CFS where asked if they've ever experienced a dismissive attitude from a health care professional. 89.4% confirmed and described the experience. The responses were sorted into five main themes: Disbelief, Inappropriate Causes, Inappropriate Treatments, Insensitivity and Lack of Knowledge. The authors says their findings strongly suggest there is a need for further training and education for health care professionals.
Abstract here Thread here
Diagnostics
''Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey'' by Leonard A. Jason et al
An extensive on-line questionnaire about PEM was developed with patient input and then filled in by over 1500 people with ME/CFS. Findings include a range of triggers, delayed onset and often long duration of PEM. Pacing was mildly to moderately helpful in avoiding PEM.
Paper here Thread here
BMJ Open - Public Health
''Prevalence and characteristics of CFS/ME in Poland: a cross-sectional study'' by Slomko et al. (includes Newton and Staines)
1400 people responding to a public appeal for people with fatigue included 69 with Fukuda CFS/ME. Symptom questionnaire data and autonomic and heart rate data were collected.
Paper here Thread here
Clinical Therapeutics
"Treatment Avenues in ME/CFS: A Split-gender Pharmacogenomic Study of Gene-expression Modules" by M. Jeffrey et al
Gene-expression data from 33 patients and controls were used to identify differential expression of predefined gene-module sets. Findings suggests that ME/CFS symptoms are perpetuated by immune dysregulation that might be approached via immune modulation treatments.
Paper here Thread here
............................................................
Psychosocial research
Journal of Contextual Behavioral Science
''Acceptance & Commitment Therapy for ME/CFS – a feasibility study'' by R. Wicksell et al. (Australia and New Zealand).
Small open label pilot study with no control group. ACT aims to change 'psychological flexibility' for 'well being'. Concludes that it is safe and shows improvements on qualitative questionnaires. Not a recommendation.
Paper here Thread here
Int. J. Environ. Res. Public Health
''Evaluating Commonalities Across Medically Unexplained Symptoms'' by Guo et al.
Claims all MUS including CFS are central sensitisation syndromes and can be treated the same by 'correcting misinterpretations of somatic sensations and hypervigilance of interoceptive processes'. Not a recommendation.
Paper here Thread here
...........................................................
Planned systematic review
Frontiers in Paediatrics
Review article provisionally accepted: ''Chronotropic incompetence: an overlooked determinant of symptoms and activity limitation in ME/CFS?'' by Davenport et al (Workwell Foundation).
''CI reflects an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate.'' A systematic review and meta-analysis.
Article here Thread here
...........................................................................
S4ME social media: Facebook, Twitter and You Tube.
............................................................................
News - events this coming week
ME/CFS International Research Symposium
12th - 15th March, Australia.
Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online.
Schedule pdf here Watch live here or here Thread here
Denmark There will be an ME debate in the Danish Parliament on 12th March.
The Minister of Health says "ME is a functional disorder. There is evidence of a positive effect of graded exercise and of cognitive behavioral therapy...'' #MillionsMissing Denmark are asking for support. The newspaper Politiken has covered the situation for ME patients in Denmark.
Tweet here Thread here (with links to the Politiken-articles)
.....................................................
Other news
UK Hospital and Outreach Education has been given a half million pound grant for 90 children with long term illnesses including ME to 'attend' school using AV1 robots.
Article here Thread here
Scotland A forum member has updated us on the Action for ME 'Educate ME' project. Evidence had been collected showing there is an unmet need for out of school education for sick children in Scotland and for education of teachers about ME.
Thread here
Cochrane Review Update ''Exercise Therapy for CFS'' by Larun et al.
The authors now have until the end of May 2019 to amend the review.
Update here Thread here
..........................................................
Trial by Error by David Tuller
''Who Has the School Study Documents?''
David Tuller and Prof Steven Lubet have tried to access documents relating to the school absence study from Bristol University and the specialist service for pediatric CFS/ME in Bath using Freedom of Information requests but both deny having the documents.
Article here Thread here
"Stupid Studies"
Tuller comments and summarises critique on two recent psychosocial studies. First is a mindfulness-based CBT intervention program for CFS/ME from Norway. Second a study on perfectionism and beliefs about emotions in adolescents with CFS and their parents by Trudie Chalder.
Article here Thread here
..........................................................
Articles, podcasts, blogs, radio, updates etc
The ME Show Series 2 Episode Six
Gary Burgess speaks to Dr Sarah Myhill. She explains her theories and experience of treating people with ME, as well as her battles with the General Medical Council. Thread discussion includes concerns about her work.
MEA article with links to podcasts here Thread here
Journal of Medical Ethics
Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” by Diane O'Leary.
O'Leary asks why bioethics is not involved, arguing that the emphasis on psychosocial management of CFS is denying patients appropriate medical care and support.
Article here Thread here
The Jackson Laboratory ME/CFS Research
Interview with Courtney Gunter, Program Manager for The Jackson Laboratory's (JAX) ME/CFS Collaborative Research Center. Among data analysis, management and coordination between collaborators, she also runs their ME/CFS blog.
Interview here Thread here
Medium "How Chronic Illness Can Influence Suicide Risk" by Dr. Lily Chu
The article states that up to 50% of suicides may not be due to mental health conditions and gives ME/CFS as an example of a physical condition that may increase suicide risk. Offers general information about ME and advice for hotline staff and volunteers on how to help callers affected by ME/CFS.
Article here Thread here
Blog article 'Beauty in the Dark' by Ryan Prior.
A moving description of Ryan's visit to Anil van der Zee who has very severe ME.
Article here Thread here
BBC Radio Bristol - John Darvall
Informative 20 minutes about ME. Interview by John Darvall with ME patient and #MEAction activist Liz and Clare Ogden from AfME.
Radio programme here (starts 2.11.00) Thread here
............................................................................
Current research
The MED study, Sweden
"ME/CFS and associated conditions and improved handling, investigation and diagnostics (the MED Study)", 2018 to 2021, by Bertilsson at Bragée Clinics in collaboration with Karolinska Institutet.
A neurological study using body symptom maps, neurological tests and MRI scans to investigate possible cranio-cervical nerve involvement in ME/CFS, whiplash, post concussion and fibromyalgia.
Clinic website here Thread here
Cardiff University Impact of ME/CFS on patients & their family
Wames (Welsh Association of ME & CFS Support) informs of a pilot study about the impact of ME/CFS on quality of life for patients and their families. ME-patients and families are invited to participate by filling out two questionnaires.
More info here Thread here
..............................................................
Other research
Health Care for Women International
"Dismissing chronic illness: A qualitative analysis of negative health care experiences" by Leonard A. Jason et al
541 survey participants with ME/CFS where asked if they've ever experienced a dismissive attitude from a health care professional. 89.4% confirmed and described the experience. The responses were sorted into five main themes: Disbelief, Inappropriate Causes, Inappropriate Treatments, Insensitivity and Lack of Knowledge. The authors says their findings strongly suggest there is a need for further training and education for health care professionals.
Abstract here Thread here
Diagnostics
''Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey'' by Leonard A. Jason et al
An extensive on-line questionnaire about PEM was developed with patient input and then filled in by over 1500 people with ME/CFS. Findings include a range of triggers, delayed onset and often long duration of PEM. Pacing was mildly to moderately helpful in avoiding PEM.
Paper here Thread here
BMJ Open - Public Health
''Prevalence and characteristics of CFS/ME in Poland: a cross-sectional study'' by Slomko et al. (includes Newton and Staines)
1400 people responding to a public appeal for people with fatigue included 69 with Fukuda CFS/ME. Symptom questionnaire data and autonomic and heart rate data were collected.
Paper here Thread here
Clinical Therapeutics
"Treatment Avenues in ME/CFS: A Split-gender Pharmacogenomic Study of Gene-expression Modules" by M. Jeffrey et al
Gene-expression data from 33 patients and controls were used to identify differential expression of predefined gene-module sets. Findings suggests that ME/CFS symptoms are perpetuated by immune dysregulation that might be approached via immune modulation treatments.
Paper here Thread here
............................................................
Psychosocial research
Journal of Contextual Behavioral Science
''Acceptance & Commitment Therapy for ME/CFS – a feasibility study'' by R. Wicksell et al. (Australia and New Zealand).
Small open label pilot study with no control group. ACT aims to change 'psychological flexibility' for 'well being'. Concludes that it is safe and shows improvements on qualitative questionnaires. Not a recommendation.
Paper here Thread here
Int. J. Environ. Res. Public Health
''Evaluating Commonalities Across Medically Unexplained Symptoms'' by Guo et al.
Claims all MUS including CFS are central sensitisation syndromes and can be treated the same by 'correcting misinterpretations of somatic sensations and hypervigilance of interoceptive processes'. Not a recommendation.
Paper here Thread here
...........................................................
Planned systematic review
Frontiers in Paediatrics
Review article provisionally accepted: ''Chronotropic incompetence: an overlooked determinant of symptoms and activity limitation in ME/CFS?'' by Davenport et al (Workwell Foundation).
''CI reflects an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate.'' A systematic review and meta-analysis.
Article here Thread here
...........................................................................
S4ME social media: Facebook, Twitter and You Tube.
............................................................................
Week beginning March 11th 2019
News
Denmark - Unanimous motion from Parliament to remove ME from functional disorders
An unanimous Parliament voted for a motion to remove ME from the umbrella term functional disorders, update guidelines and initiate specialised treatments for ME.
Congratulations Danish patients!
Thread here post #42
Solve ME/CFS Initiative CEO to step down
Carol Head, who had been President and CEO of SMCI for 6 years, is to step down because of her health (she has ME). She has done an outstanding job and will be very much missed. She will remain on the board.
Article with video here Thread here
UK - SMILE trial data to be released
John Peters v the ICO and University of Bristol.
The First Tier Freedom of Information Tribunal finds for the Appellant and orders the release of the SMILE trial data. The decision was unanimous without holding a hearing.
The SMILE trial, led by Esther Crawley, was a trial of the controversial Lightning Process as a treatment for children with ME/CFS.
Tribunal document here Thread here
............................................................
In the media
ABC Radio Melbourne Mornings
Informative interview about ME with Dr. Heidi Nicholl (EMERGE) and Prof. Paul Fisher.
Interview here (Starts at 37.00 - 51.30) Thread here post #25
Reuters ''Special Report: Online activists are silencing us, scientists say'' by Kate Kelland.
A weak one sided article quoting unpleasant tweets about Michael Sharpe, and claiming researchers are leaving ME research because of harassment. Includes quotes from CBT/GET supporters and misrepresents David Tuller's work and the challenges to PACE and Cochrane.
Articles based on this were published in some newspapers. See thread for details.
Article here Thread here
Thread collating past and current media 'harassment' articles here
Norway Feature article about ME in local paper Stavanger Aftenblad
Feature article about ME in children and adolescents. Tells the story of Rebecka who was diagnosed with ME when she was 5 years old. Interview with paediatrician Inger K.I. Vestergaard from Stavanger university hospital. Article is paywalled.
Thread with summary here post 510
..........................................................
Trial by Error by David Tuller
''Kaiser Permanente Changes Course''
David Tuller interviews Dr Steve Olson, a North California regional director for KP, who has been educated about ME by patient Jeff Schwartz. As a result of Jeff's efforts KP has changed direction on ME/CFS. Dr Olsen admits they got it wrong, says ME is not depression or deconditioning and the CBT/GET treatment is wrong. Next month KP will hold a video education conference about its new approach, based on CDC recommendations.
Article here Thread here
"Cochrane's Report on Courtney's Complaint"
David Tuller has a copy of Cochrane's report on Robert Courtney's complaint about the review of exercise therapies for ME. He gives a summary and a link to the report.
Article here Report here Thread here
............................................................
Articles, podcasts, blogs
The ME Show Series 2 Episode Seven
Gary Burgess speaks to The Countess of Mar, ME advocate in the UK House of Lords and Chair of the Forward ME group. She talks about progress made, the importance of the NICE guideline review, and charities presenting a united front.
MEA article with links to podcast here Thread here
USA CDC conference call on March 11th.
Dr Elizabeth Unger gave an update from the CDC.
Dr Benjamin Natelson, Neurology professor, talked about his research on ME and FM. Current projects studying proteins in cerebrospinal fluid, and a sleep study.
He also described orthostatic intolerance as caused by low blood volume (POTS) or hyperventilation (POHS) and their treatment. A transcript will be provided.
Thread here
DePaul Magazine The Myth of "It's All in Your Head"
Includes the story of Pat Fero who has suffered from ME since 1980. Prof. Leonard Jason talks about his ME research. Also Marcie and Mark Zinn's research on ME and quantitative electroencephalography and professor Ben Katz on researching the link between mononucleosis and ME in youth.
Article here Thread here
MEA ME/CFS researcher Dr Cara Tomas explains the results from a new study on energy production and mitochondria. In this article she provides a summary explanation of her recent research.
Article here Thread here
........................................................
Conference report
ME/CFS International Research Symposium, Australia
A very successful event was held this week. Most of it was live streamed and talks that don't contain embargoed results will be available to watch online soon.
Thread here
.............................................
Research
Journal of Translational Medicine
''Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in ME/CFS'' by Nelson et al.
Small study found Work Rate at Ventilatory Threshold decreased from day 1 to day 2 and by a greater magnitude in ME/CFS patients. The percentage decrease may represent and objective diagnostic biomarker.
Paper here Thread here
The Journal of Pediatrics
"A Validated Scale for Assessing the Severity of Acute Infectious Mononucleosis" by Katz, Jason et al
126 students with mononucleosis were studied. The results of a severity scale developed by the authors have been analysed. The authors conclude that the severity scale has predictive validity.
Paper here Thread here
Clinical Therapeutics
''Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary'' by Broderick, Klimas, et al.
Drug treatment trials for ME/CFS have so far been inconclusive. The authors suggest 'it may be beneficial to explore broader-acting combination therapies in which a more focused precision-medicine approach is supported by a systems-level analysis of endocrine and immune co-regulation.'
Articles here Thread here
Clinical Therapeutics
"Associations Between Autonomic and Orthostatic Self-report and Physician Ratings of Orthostatic Intolerance in Youth" by Schultz et al
191 participants, 42 were healthy controls. Results suggest that although orthostatic dysfunctioning is reported in children and adolescents with CFS symptoms, the physical measures of it in this study were unable to detect these symptoms.
Abstract here Thread here
Behavioural and Cognitive Psychotherapy
''Implementation of stepped care for patients with CFS in community-based mental health care: outcomes at post-treatment and long-term follow-up'' by Knoop et al.
Uncontrolled study, subjective outcomes, Fukuda criteria, claims improvement but not as good at a specialist centre. Not a recommendation.
Paper here Thread here
Journal of Medical Internet Research
''Internet-Based CBT in Stepped Care for CFS: Randomized Noninferiority Trial'' by Knoop et al.
Suggests internet CBT before face to face CBT saves money. There was a large drop out rate from both. Not a recommendation.
Paper here Thread here
.....................................................
More on the PACE trial - letter and response
BMC Psychology - Correspondence
''The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al'' by Sharpe, Goldsmith and Chalder.
An attempt by some of the PACE authors to refute the findings of the Wilshire PACE reanalyis paper. Not a recommendation.
Letter here Thread here
At the Journal's invitation, Wilshire and Kindlon submitted a reply to this letter which is awaiting publication. They explain the flaws in the key arguments in the Sharpe et al. letter.
Thread post here
..........................................................
Advocacy
SMCI and #MEAction: ME/CFS Advocacy Week Online Training Part 1: Best Practices for a Successful Advocacy Meeting.
Solve ME/CFS Initiative and #MEAction present an online workshop to help you host a successful meeting as part of ME/CFS Advocacy week. 57 minute video.
YouTube video here Thread here
...........................................................................
Study recruitment and information requests
NIH Request for information Soliciting Input on How Best to Advance ME/CFS research
NIH is soliciting input from all interested stakeholders on ME/CFS research needs, relevant considerations/strategies and more. Responses can be submitted electronically until April 15th, 2019.
Notice from NIH here Thread here
Norway Recruitment for participants with ME and families for qualitative study
The independent research organisations Sintef and Fafo are collaborating on a study of the needs of ME patients and their families, as well as usage of and experience with health care services. They invite people in Norway who are interested to participate to fill out a short questionnaire.
Thread here Questionnaire here
............................................................................
S4ME social media: Facebook, Twitter and You Tube.
News
Denmark - Unanimous motion from Parliament to remove ME from functional disorders
An unanimous Parliament voted for a motion to remove ME from the umbrella term functional disorders, update guidelines and initiate specialised treatments for ME.
Congratulations Danish patients!
Thread here post #42
Solve ME/CFS Initiative CEO to step down
Carol Head, who had been President and CEO of SMCI for 6 years, is to step down because of her health (she has ME). She has done an outstanding job and will be very much missed. She will remain on the board.
Article with video here Thread here
UK - SMILE trial data to be released
John Peters v the ICO and University of Bristol.
The First Tier Freedom of Information Tribunal finds for the Appellant and orders the release of the SMILE trial data. The decision was unanimous without holding a hearing.
The SMILE trial, led by Esther Crawley, was a trial of the controversial Lightning Process as a treatment for children with ME/CFS.
Tribunal document here Thread here
............................................................
In the media
ABC Radio Melbourne Mornings
Informative interview about ME with Dr. Heidi Nicholl (EMERGE) and Prof. Paul Fisher.
Interview here (Starts at 37.00 - 51.30) Thread here post #25
Reuters ''Special Report: Online activists are silencing us, scientists say'' by Kate Kelland.
A weak one sided article quoting unpleasant tweets about Michael Sharpe, and claiming researchers are leaving ME research because of harassment. Includes quotes from CBT/GET supporters and misrepresents David Tuller's work and the challenges to PACE and Cochrane.
Articles based on this were published in some newspapers. See thread for details.
Article here Thread here
Thread collating past and current media 'harassment' articles here
Norway Feature article about ME in local paper Stavanger Aftenblad
Feature article about ME in children and adolescents. Tells the story of Rebecka who was diagnosed with ME when she was 5 years old. Interview with paediatrician Inger K.I. Vestergaard from Stavanger university hospital. Article is paywalled.
Thread with summary here post 510
..........................................................
Trial by Error by David Tuller
''Kaiser Permanente Changes Course''
David Tuller interviews Dr Steve Olson, a North California regional director for KP, who has been educated about ME by patient Jeff Schwartz. As a result of Jeff's efforts KP has changed direction on ME/CFS. Dr Olsen admits they got it wrong, says ME is not depression or deconditioning and the CBT/GET treatment is wrong. Next month KP will hold a video education conference about its new approach, based on CDC recommendations.
Article here Thread here
"Cochrane's Report on Courtney's Complaint"
David Tuller has a copy of Cochrane's report on Robert Courtney's complaint about the review of exercise therapies for ME. He gives a summary and a link to the report.
Article here Report here Thread here
............................................................
Articles, podcasts, blogs
The ME Show Series 2 Episode Seven
Gary Burgess speaks to The Countess of Mar, ME advocate in the UK House of Lords and Chair of the Forward ME group. She talks about progress made, the importance of the NICE guideline review, and charities presenting a united front.
MEA article with links to podcast here Thread here
USA CDC conference call on March 11th.
Dr Elizabeth Unger gave an update from the CDC.
Dr Benjamin Natelson, Neurology professor, talked about his research on ME and FM. Current projects studying proteins in cerebrospinal fluid, and a sleep study.
He also described orthostatic intolerance as caused by low blood volume (POTS) or hyperventilation (POHS) and their treatment. A transcript will be provided.
Thread here
DePaul Magazine The Myth of "It's All in Your Head"
Includes the story of Pat Fero who has suffered from ME since 1980. Prof. Leonard Jason talks about his ME research. Also Marcie and Mark Zinn's research on ME and quantitative electroencephalography and professor Ben Katz on researching the link between mononucleosis and ME in youth.
Article here Thread here
MEA ME/CFS researcher Dr Cara Tomas explains the results from a new study on energy production and mitochondria. In this article she provides a summary explanation of her recent research.
Article here Thread here
........................................................
Conference report
ME/CFS International Research Symposium, Australia
A very successful event was held this week. Most of it was live streamed and talks that don't contain embargoed results will be available to watch online soon.
Thread here
.............................................
Research
Journal of Translational Medicine
''Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in ME/CFS'' by Nelson et al.
Small study found Work Rate at Ventilatory Threshold decreased from day 1 to day 2 and by a greater magnitude in ME/CFS patients. The percentage decrease may represent and objective diagnostic biomarker.
Paper here Thread here
The Journal of Pediatrics
"A Validated Scale for Assessing the Severity of Acute Infectious Mononucleosis" by Katz, Jason et al
126 students with mononucleosis were studied. The results of a severity scale developed by the authors have been analysed. The authors conclude that the severity scale has predictive validity.
Paper here Thread here
Clinical Therapeutics
''Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary'' by Broderick, Klimas, et al.
Drug treatment trials for ME/CFS have so far been inconclusive. The authors suggest 'it may be beneficial to explore broader-acting combination therapies in which a more focused precision-medicine approach is supported by a systems-level analysis of endocrine and immune co-regulation.'
Articles here Thread here
Clinical Therapeutics
"Associations Between Autonomic and Orthostatic Self-report and Physician Ratings of Orthostatic Intolerance in Youth" by Schultz et al
191 participants, 42 were healthy controls. Results suggest that although orthostatic dysfunctioning is reported in children and adolescents with CFS symptoms, the physical measures of it in this study were unable to detect these symptoms.
Abstract here Thread here
Behavioural and Cognitive Psychotherapy
''Implementation of stepped care for patients with CFS in community-based mental health care: outcomes at post-treatment and long-term follow-up'' by Knoop et al.
Uncontrolled study, subjective outcomes, Fukuda criteria, claims improvement but not as good at a specialist centre. Not a recommendation.
Paper here Thread here
Journal of Medical Internet Research
''Internet-Based CBT in Stepped Care for CFS: Randomized Noninferiority Trial'' by Knoop et al.
Suggests internet CBT before face to face CBT saves money. There was a large drop out rate from both. Not a recommendation.
Paper here Thread here
.....................................................
More on the PACE trial - letter and response
BMC Psychology - Correspondence
''The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al'' by Sharpe, Goldsmith and Chalder.
An attempt by some of the PACE authors to refute the findings of the Wilshire PACE reanalyis paper. Not a recommendation.
Letter here Thread here
At the Journal's invitation, Wilshire and Kindlon submitted a reply to this letter which is awaiting publication. They explain the flaws in the key arguments in the Sharpe et al. letter.
Thread post here
..........................................................
Advocacy
SMCI and #MEAction: ME/CFS Advocacy Week Online Training Part 1: Best Practices for a Successful Advocacy Meeting.
Solve ME/CFS Initiative and #MEAction present an online workshop to help you host a successful meeting as part of ME/CFS Advocacy week. 57 minute video.
YouTube video here Thread here
...........................................................................
Study recruitment and information requests
NIH Request for information Soliciting Input on How Best to Advance ME/CFS research
NIH is soliciting input from all interested stakeholders on ME/CFS research needs, relevant considerations/strategies and more. Responses can be submitted electronically until April 15th, 2019.
Notice from NIH here Thread here
Norway Recruitment for participants with ME and families for qualitative study
The independent research organisations Sintef and Fafo are collaborating on a study of the needs of ME patients and their families, as well as usage of and experience with health care services. They invite people in Norway who are interested to participate to fill out a short questionnaire.
Thread here Questionnaire here
............................................................................
S4ME social media: Facebook, Twitter and You Tube.
Week beginning 18th March 2019
Trial by Error by David Tuller
''My Letter to Professor Hotopf About Bristol's School Absence Study''
Prof Hotopf was a reviewer of the school absence study led by Esther Crawley published in 2011. His review raised ethical concerns but the study was still published. David has e-mailed Prof Hotopf with explanation and questions to try to clarify why the trial was published despite the concerns raised, and what Prof Hotopf was told at the time.
Article here Thread here
"My Letter to Kate Kelland"
David Tuller has sent a letter to Kate Kelland, author of the recent Reuters article (see last week's news). He is working on a longer response to the article, but meanwhile points out that Kelland has been imprecise about his academic appointment and Prof Racianello's Virology blog which hosts David Tuller's articles.
Letter here Thread here
..........................................................
In the media
UK BBC Radio 4 Today program, Monday 18th March. A 4 minute interview with Prof Michael Sharpe in which he repeated his claims that a small group of patients and activists have driven him out of researching 'CFS sometimes also called ME'.
Thread here
........................................................
Responses to recent media attacks on ME patients
Not the Science Bit by Brian Hughes
''If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*''
Referring to the Reuters and Liddle articles, and Frances Ryan's 'eloquent riposte', Professor Hughes highlights a 'Malingering and Illness Deception'' meeting in 2001 as evidence that PACE was never intended to find out what helped patients, but to complete the confirmation of the psychogenic theory. He describes the gaslighting of patients, and ends by asking who is trolling who.
Article here Thread here
#MEAction ''Fighting for rigorous science and accurate reporting''
Short article and copy of a letter to Reuters pointing out the many inaccuracies in Kate Kelland's article, pointing out that PACE is flawed, the treatments do harm and the good biomedical science happening now. Calls for Reuters to reconsider its stance.
Article here Thread discussing the response from ME charities here
#MEAction ''Our community will not suffer stigma and distortion''
An update with a letter sent to every journalist and editor who published stigmatising articles. pwME are encouraged to respond on social media with positive links such as the UK ME/CFS Biobank and the Emerge conference. We need to take care of ourselves and each other at this difficult time.
Article here Thread here
Mr Topple blog ''The media is waging a coordinated war against chronically ill and disabled people''. Former journalist on the Canary, Steve Topple has written a series of 3 articles about the current media blitz reporting Michael Sharpe's complaints of harassment, involvement of the Science Media Centre, political influences and the effect on patients.
Articles here Thread here
Medium ''ME Patients and the Researchers that Silence Them''
Article by ME patient and former journalist Laura Elliott. A good response to the Reuters article which claimed that patients are silencing researchers.
Article here Thread here
The Guardian ''Rod Liddle vilifies disabled people. I'm tired of the hate. We all should be''
Good opinion piece by Frances Ryan which raises concern over normalised hatred of minorities.
Article here Thread here
The Canary ''The establishment media has launched a vicious "war" on chronically ill people''
Fréa Lockley on the backdrop for what the establishment media failed to report.
Article here Thread here
Occupy M.E. ''Drinking From a Fire Hose''
Reflections from Jennie Spotila on self care when news and advocacy work is overwhelming.
Blog post here Thread here
Disabled People Against Cuts (DPAC) ''Biopsychosocial lobby and right wing media attack #pwme''
A response in solidarity with ME patients to the Reuters article and Rod Liddle's awful article in The Times.
Article here Thread here
...........................................................
Articles, podcasts, blogs, books...
The ME Show Series 2 Episode 8. Gary Burgess interviews Dr Nina Muirhead about her own experience of ME and her work on raising awareness and medical education. Excellent interview. 22 minutes.
MEA article with link to podcast here Thread here
Handbook of Sleep Disorders in Medical Conditions
Chapter 15 - CFS and Fibromyalgia by Togo, Kishi & Natelson.
From the abstract: 'Polysomnographic studies have shown sleep problems in CFS and FM...', '...antidepressants, graded exercise, and CBT have been shown to produce improvements...' Suggests more research is needed on non- pharmacological treatments.
Abstract here Thread here
#MEAction ''A Glorious Moment for the Dutch Government to Step Up to the Plate'' Fleur Eliza, Dutch ME sufferer, writes of her hopes now that the Minister of Medical Care has promised to act on the need for biomedical research and care.
Article here Thread here
Low Battery Man Servando Castello, AKA “Low Battery Man", patient activist is taking to the streets of Spain and Portugal to raise awareness of ME/CFS and fund raise to support OMF’s research programs.
Blog in Spanish here Thread here
......................................................
Biomedical Research
PLoSONE
"Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing post-exertional malaise following cardiopulmonary exercise testing" by Chiu et al
14 ME patients and 11 controls underwent 2 day CPET. The patients had worsening of symptoms, but no important differences in gene expression or viral reactivation were found.
Study here Thread here
Molecular Neurobiology
''Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with CFS'' by Espinosa and Urra.
Small study. The authors suggest this finding could help with diagnosis.
Paper here Thread here
........................................................
Literature reviews and hypotheses
Frontiers in Paediatrics
Review article ''Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS?'' by Davenport et al.
Full paper now available detailing findings from exercise studies of abnormal heart rate response to exercise, and making suggestions for future research. Written by the Workwell Foundation team experienced in CPET testing in ME/CFS.
Paper here Press release here Thread here
Expert Review of Clinical Immunology
''Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?'' by Theoharides et al.
Research papers on complex disorders including ME/CFS were searched for symptoms or biochemistry related to mast cell disorders. Says conditions associated with elevated serum or urine levels of any mast cell mediator should be investigated and treated.
Article here Thread here
Chronic Illness
''A systematic review of the association between fatigue and cognition in chronic noncommunicable diseases'' Menzies et al
Large literature search found 2 CFS studies that showed significant association. Abstract suggests causative link (fatigue causing cognitive impairment). No evidence given for this. Not a recommendation.
Article here Thread here
.....................................................................
Psychosocial Research
Journal of Health Psychology
''Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in ME/CFS'' by Catchpole and Garip.
Studied the experiences of 7 family carers. Found acceptance helped. Skepticism from others was a problem. There was a need for better support and advice.
Paper here Thread here
Clinical Child Psychology and Psychiatry
"Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort" by Loades et al (including Chalder).
Used questionnaires to compare cognitive and behavioural responses of adolescents and their parents with CFS (N =121) and asthma. (N=27). Claims to find such responses particularly prominent in CFS adolescents and that they could be contributing to "fatigue maintenance and disability". Confuses correlation and causation. Not a recommendation.
Paper here Thread here
.........................................................
Research news
USA - Microbe Discovery Project
The Microbe Discovery Project has announced that they are merging with Columbia University Center for Infection and Immunity (CII) Center for Solutions for ME/CFS.
Facebook announcement here Thread here post #10
Germany - The Charité – Universitätsmedizin Berlin has opened a new centre to explore the causes of fatigue in different diseases, including ME/CFS, MS and cancer, to develop diagnostic markers and to carry out diagnostic tests.
Thread here
UK CureME - ME/CFS Biobank update of research projects using Biobank samples includes Professor Faisel Khan, a Professor of Cardiovascular Medicine at the University of Dundee. His study is “Mechanistic Insights into the Pathophysiology of CFS/ME: A Study Examining Nrf2 Antioxidant Gene Expression and its Role in Combatting Oxidative Stress”
CureME link here Thread here
ME Research UK Funding award: ''Exploring an anti-citrullinated antibody signature in ME/CFS'', Prof. Mercedes Rincon, University of Vermont, USA. The research group she heads is interested in the molecular mechanisms underlying autoimmune diseases. This study will compare ME and MS patients.
Article here Thread here
Simmaron Research ''Dr Nath Talks on the ME/CFS NIH Intramural Study'' by Cort Johnson.
No new information about the study or results.
After a chatty section about himself, and a summary of Dr Nath's research background, Johnson reports on his interview with Dr Nath. Nearly half the numbers planned have done phase 1 and a few phase 2, but 6 of the ME group from phase 1 were found to have rare disorders, so are no longer in the study.
Article here NIH study information here Thread here
...........................................................................
Advocacy action
USA ''URGENT ADVOCACY ACTION! House FY20 Funding Requests''
Solve ME/CFS Initiative urges you to contact your member of congress to support two specific requests for funding being put forward.
Thread with details, links and template letter here
....................................................
Coming events - USA
SMCI ME/CFS Advocacy Week and DC Lobby Day, 2nd to 5th April.
Thread with details here
NIH Accelerating Research on ME/CFS meeting, 4th and 5th April.
Lots of good speakers. You can register to attend in person or as a remote attendee.
Agenda here Thread here
NIH: ME/CFS Telebriefing- 9th April.
Thread with details here
.................................................................................
S4ME social media: Facebook, Twitter and You Tube.
Trial by Error by David Tuller
''My Letter to Professor Hotopf About Bristol's School Absence Study''
Prof Hotopf was a reviewer of the school absence study led by Esther Crawley published in 2011. His review raised ethical concerns but the study was still published. David has e-mailed Prof Hotopf with explanation and questions to try to clarify why the trial was published despite the concerns raised, and what Prof Hotopf was told at the time.
Article here Thread here
"My Letter to Kate Kelland"
David Tuller has sent a letter to Kate Kelland, author of the recent Reuters article (see last week's news). He is working on a longer response to the article, but meanwhile points out that Kelland has been imprecise about his academic appointment and Prof Racianello's Virology blog which hosts David Tuller's articles.
Letter here Thread here
..........................................................
In the media
UK BBC Radio 4 Today program, Monday 18th March. A 4 minute interview with Prof Michael Sharpe in which he repeated his claims that a small group of patients and activists have driven him out of researching 'CFS sometimes also called ME'.
Thread here
........................................................
Responses to recent media attacks on ME patients
Not the Science Bit by Brian Hughes
''If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*''
Referring to the Reuters and Liddle articles, and Frances Ryan's 'eloquent riposte', Professor Hughes highlights a 'Malingering and Illness Deception'' meeting in 2001 as evidence that PACE was never intended to find out what helped patients, but to complete the confirmation of the psychogenic theory. He describes the gaslighting of patients, and ends by asking who is trolling who.
Article here Thread here
#MEAction ''Fighting for rigorous science and accurate reporting''
Short article and copy of a letter to Reuters pointing out the many inaccuracies in Kate Kelland's article, pointing out that PACE is flawed, the treatments do harm and the good biomedical science happening now. Calls for Reuters to reconsider its stance.
Article here Thread discussing the response from ME charities here
#MEAction ''Our community will not suffer stigma and distortion''
An update with a letter sent to every journalist and editor who published stigmatising articles. pwME are encouraged to respond on social media with positive links such as the UK ME/CFS Biobank and the Emerge conference. We need to take care of ourselves and each other at this difficult time.
Article here Thread here
Mr Topple blog ''The media is waging a coordinated war against chronically ill and disabled people''. Former journalist on the Canary, Steve Topple has written a series of 3 articles about the current media blitz reporting Michael Sharpe's complaints of harassment, involvement of the Science Media Centre, political influences and the effect on patients.
Articles here Thread here
Medium ''ME Patients and the Researchers that Silence Them''
Article by ME patient and former journalist Laura Elliott. A good response to the Reuters article which claimed that patients are silencing researchers.
Article here Thread here
The Guardian ''Rod Liddle vilifies disabled people. I'm tired of the hate. We all should be''
Good opinion piece by Frances Ryan which raises concern over normalised hatred of minorities.
Article here Thread here
The Canary ''The establishment media has launched a vicious "war" on chronically ill people''
Fréa Lockley on the backdrop for what the establishment media failed to report.
Article here Thread here
Occupy M.E. ''Drinking From a Fire Hose''
Reflections from Jennie Spotila on self care when news and advocacy work is overwhelming.
Blog post here Thread here
Disabled People Against Cuts (DPAC) ''Biopsychosocial lobby and right wing media attack #pwme''
A response in solidarity with ME patients to the Reuters article and Rod Liddle's awful article in The Times.
Article here Thread here
...........................................................
Articles, podcasts, blogs, books...
The ME Show Series 2 Episode 8. Gary Burgess interviews Dr Nina Muirhead about her own experience of ME and her work on raising awareness and medical education. Excellent interview. 22 minutes.
MEA article with link to podcast here Thread here
Handbook of Sleep Disorders in Medical Conditions
Chapter 15 - CFS and Fibromyalgia by Togo, Kishi & Natelson.
From the abstract: 'Polysomnographic studies have shown sleep problems in CFS and FM...', '...antidepressants, graded exercise, and CBT have been shown to produce improvements...' Suggests more research is needed on non- pharmacological treatments.
Abstract here Thread here
#MEAction ''A Glorious Moment for the Dutch Government to Step Up to the Plate'' Fleur Eliza, Dutch ME sufferer, writes of her hopes now that the Minister of Medical Care has promised to act on the need for biomedical research and care.
Article here Thread here
Low Battery Man Servando Castello, AKA “Low Battery Man", patient activist is taking to the streets of Spain and Portugal to raise awareness of ME/CFS and fund raise to support OMF’s research programs.
Blog in Spanish here Thread here
......................................................
Biomedical Research
PLoSONE
"Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing post-exertional malaise following cardiopulmonary exercise testing" by Chiu et al
14 ME patients and 11 controls underwent 2 day CPET. The patients had worsening of symptoms, but no important differences in gene expression or viral reactivation were found.
Study here Thread here
Molecular Neurobiology
''Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with CFS'' by Espinosa and Urra.
Small study. The authors suggest this finding could help with diagnosis.
Paper here Thread here
........................................................
Literature reviews and hypotheses
Frontiers in Paediatrics
Review article ''Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS?'' by Davenport et al.
Full paper now available detailing findings from exercise studies of abnormal heart rate response to exercise, and making suggestions for future research. Written by the Workwell Foundation team experienced in CPET testing in ME/CFS.
Paper here Press release here Thread here
Expert Review of Clinical Immunology
''Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?'' by Theoharides et al.
Research papers on complex disorders including ME/CFS were searched for symptoms or biochemistry related to mast cell disorders. Says conditions associated with elevated serum or urine levels of any mast cell mediator should be investigated and treated.
Article here Thread here
Chronic Illness
''A systematic review of the association between fatigue and cognition in chronic noncommunicable diseases'' Menzies et al
Large literature search found 2 CFS studies that showed significant association. Abstract suggests causative link (fatigue causing cognitive impairment). No evidence given for this. Not a recommendation.
Article here Thread here
.....................................................................
Psychosocial Research
Journal of Health Psychology
''Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in ME/CFS'' by Catchpole and Garip.
Studied the experiences of 7 family carers. Found acceptance helped. Skepticism from others was a problem. There was a need for better support and advice.
Paper here Thread here
Clinical Child Psychology and Psychiatry
"Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort" by Loades et al (including Chalder).
Used questionnaires to compare cognitive and behavioural responses of adolescents and their parents with CFS (N =121) and asthma. (N=27). Claims to find such responses particularly prominent in CFS adolescents and that they could be contributing to "fatigue maintenance and disability". Confuses correlation and causation. Not a recommendation.
Paper here Thread here
.........................................................
Research news
USA - Microbe Discovery Project
The Microbe Discovery Project has announced that they are merging with Columbia University Center for Infection and Immunity (CII) Center for Solutions for ME/CFS.
Facebook announcement here Thread here post #10
Germany - The Charité – Universitätsmedizin Berlin has opened a new centre to explore the causes of fatigue in different diseases, including ME/CFS, MS and cancer, to develop diagnostic markers and to carry out diagnostic tests.
Thread here
UK CureME - ME/CFS Biobank update of research projects using Biobank samples includes Professor Faisel Khan, a Professor of Cardiovascular Medicine at the University of Dundee. His study is “Mechanistic Insights into the Pathophysiology of CFS/ME: A Study Examining Nrf2 Antioxidant Gene Expression and its Role in Combatting Oxidative Stress”
CureME link here Thread here
ME Research UK Funding award: ''Exploring an anti-citrullinated antibody signature in ME/CFS'', Prof. Mercedes Rincon, University of Vermont, USA. The research group she heads is interested in the molecular mechanisms underlying autoimmune diseases. This study will compare ME and MS patients.
Article here Thread here
Simmaron Research ''Dr Nath Talks on the ME/CFS NIH Intramural Study'' by Cort Johnson.
No new information about the study or results.
After a chatty section about himself, and a summary of Dr Nath's research background, Johnson reports on his interview with Dr Nath. Nearly half the numbers planned have done phase 1 and a few phase 2, but 6 of the ME group from phase 1 were found to have rare disorders, so are no longer in the study.
Article here NIH study information here Thread here
...........................................................................
Advocacy action
USA ''URGENT ADVOCACY ACTION! House FY20 Funding Requests''
Solve ME/CFS Initiative urges you to contact your member of congress to support two specific requests for funding being put forward.
Thread with details, links and template letter here
....................................................
Coming events - USA
SMCI ME/CFS Advocacy Week and DC Lobby Day, 2nd to 5th April.
Thread with details here
NIH Accelerating Research on ME/CFS meeting, 4th and 5th April.
Lots of good speakers. You can register to attend in person or as a remote attendee.
Agenda here Thread here
NIH: ME/CFS Telebriefing- 9th April.
Thread with details here
.................................................................................
S4ME social media: Facebook, Twitter and You Tube.
Last edited:
Week beginning 25th March 2019
News
David Tuller
UC Berkeley crowdfunding has opened its appeal to fund David Tuller's position as a senior fellow in public health and journalism at Berkeley’s Center for Global Public Health for another year. David's main responsibility in this 0.6 position will continue to be his work on ME/CFS. The target is $95,000 to cover salary, benefits and University costs. The appeal closes at the end of April.
Trial By Error: Reporting on ME/CFS and Related Controversies
David reports on his work so far and his plans for the coming year.
Article with appeal here Thread here
Australia $3 million research funding for Chronic Fatigue Syndrome.
The Minister for Health, Greg Hunt MP, has announced an allocation of $3 million for ME/CFS research through the Government's National Health and Medical Research Council.
Press release here Thread here
Australia Representatives of Emerge and ME Australia met with senior executives from the National Disability Insurance Agency, who administer the national disability insurance scheme (NDIS) to discuss how the agency can better support people with ME.
Article here Thread here
UK Parliament Prime Ministers' Questions is a weekly hour where a few MP's ask questions of the PM in the House of Commons. This week Carol Monaghan asked the PM to look into child protection proceedings being taken against families who refuse GET treatment for their very sick children with ME. The PM said she would ask the relevant minister to look into it.
Tweet with link to video here (51 seconds) Thread here
......................................................
In the media
UK Sunday Times readers comments: "The ‘invisible illness’: what it feels like to live with chronic fatigue syndrome or ME"
Three people with ME tell their ME story in a sympathetic article following Ron Liddle's awful article the paper published last week.
Article here Thread here
Sweden Author Karin Alvtegen has written a book about ME and her experiences as a patient. David Tuller has contributed. Alvtegen was interviewed on TV together with Dr Anna Lindquist about the situation for ME patients in Sweden.
Interview here (in Swedish) Thread here
..............................................................
Trial by Error by David Tuller
The CDC's Pathetic Response to Reuters
Dr. Elizabeth Unger told Reuters that the reason the CDC removed CBT/GET as treatment recommendations were that people had "misinterpreted" what it meant. This is an unconvincing claim and CDC should instead have admitted they made a mistake.
Article here Thread here
..............................................................
Articles, podcasts, blogs..
The ME Show Series 2 Episode 9. Gary Burgess interviews Carol Monaghan MP. They talk about the Parliamentary debate, recent articles in UK media, Michael Sharpe, DWP and an ME afternoon tea she's arranged in Glasgow.
MEA article with link to podcast here Thread here
#MEAction A response to Dr Mark Porter's article about ME in the Times (UK) by Robert Saunders.
Although Dr Porter's article was well-intended, Robert points out some misunderstandings and faults which make the article unhelpful.
Article here Thread here
Berkeley Wellness ''Reeducating Doctors About ME/CFS'' by David Tuller.
Article including David Tuller's interview with Dr Steven Olson, Kaiser Permanente Medical Group's regional physician director for Northern California about his better understanding of ME/CFS and plans to educate KP doctors.
Article here Thread here
The Jackson Laboratory USA ''PERSPECTIVES ON ME/CFS - Difficult to diagnose. Difficult to treat. A pain to live with.''
A new section of their website gathers together their recent articles on ME/CFS.
Website here Thread here
Hysterical Women '"Death means we believe you now": dismissed as a neurotic mother'.
A heart breaking guest article by Clare Norton, mother of Merryn Crofts, a severe ME-sufferer who passed away only 21 years old. The article highlights the problems experienced by very sick people with ME and their parents not being believed by medical staff.
Article here Thread here
Video ''Response to Michael Sharpe's claims of harassment''.
A five minute compilation of clips from Parliamentary debates and other publicly available sources challenging Sharpe's narrative.
Video here Thread here and here
...............................................
Biomedical research
PLoSONE "Network structure underpinning (dys)homeostasis in chronic fatigue syndrome; Preliminary findings" by Clark, Newton et al
Samples of 42 patients and 9 controls measuring autonomic nervous system output. Concludes that the underlying network structure of the autonomic system differs from that of controls.
Paper here Thread here
Clinical Therapeutics "Epigenetic Components of ME/CFS Uncover Potential Transposable Element Activation" by Eloy Almenar-Pérez et al.
Literature search evaluating the ME/CFS epigenome landscape. The researchers say they uncovered particular associations of transposable elements and ME/CFS epigenetic hallmarks.
Paper here Thread here
...............................................................
More on the PACE trial
BMC Psychology "Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings" by Carolyn Wilshire and Tom Kindlon.
A thorough and excellent response to the recent Sharpe et al. article that attempted to dismiss the PACE reanalysis paper by Wilshire et al. This article addresses seven arguments and concludes that none were sufficient for the PACE researchers to digress from the trial's pre-registered protocol.
Response here Thread here
..................................................
Psychosocial Research
Frontiers in Pediatrics
''Impaired Health-Related Quality of Life in Adolescent ME/CFS: The Impact of Core Symptoms'' by Rowe et al.
Comparison of patients attending an ME clinic aged 10-23 with healthy controls showed substantially reduced HRQOL - worse than other chronic conditions. Also concludes: ''The findings of this study lend further support to the inclusion of PEM, cognitive impairment, and orthostatic intolerance as core symptoms of pediatric ME/CFS.''
Paper here Thread here
Journal of Behavioural Medicine - Letters to the editor
Two letters pointing out serious flaws in a paper by Ali, Chalder et al published in January. Problems included diagnosis, recovery claims and misuse of correlation as causation to draw erroneous conclusions.
''Fear avoidance in CFS/ME: invalid results'' by Michiel Tack.
Letter here Thread here
''Cognitive-behavioral and graded exercise therapies for chronic fatigue (syndrome) are associated with lower levels of work/school attendance'' by Frank Twisk.
Letter here Thread here
....................................................................
Other research
Journal of Neuroinflammation "Hyperactivation of proprioceptors induces microglia-mediated long-lasting pain in a rat model of CFS" by Masaya Yasui et al.
Rats put under stress were used as an animal model for CFS and conclusions were drawn about pain. CFS is defined in the paper as a 'Functional somatic syndrome'.
Paper here Thread here
.......................................................................
Research news
OMF Funds Collaborative Research Center in Sweden
OMF have announced they will fund the establishment of an ME/CFS Collaborative Research Center at Uppsala University in Sweden to be led by Jonas Bergquist, MD, PhD.
Announcement here Thread here
Solve ME/CFS Initiative introduce a researcher they are funding who is new to ME, Dr. Hector Bonilla. His ongoing study is: “Cross-sectional study to assess the prevalence of APOE e4 alleles in patients with ME/CFS and the association with herpes virus infection”.
Article here Thread here
...........................................................
Fundraising
David Tuller UC Berkeley is fundraising to continue employing David Tuller. See above news item.
New Zealand Otago University is fundraising for Professor Tate's research. Current projects include energy production and epigenetics.
Donate here Thread here
...........................................................
Advocacy
New Zealand Invitation to join M.E. Awareness NZ and our Online MillionsMissingNZ Campaign. Public and private Facebook pages have been set up and a social media awareness raising campaign is being planned for International ME Awareness day on 12th May.
Public Facebook page here Thread here
............................................................
Coming events - this week in the USA
SMCI ME/CFS Advocacy Week and DC Lobby Day, 2nd to 5th April.
Thread with details here
NIH Accelerating Research on ME/CFS meeting, 4th and 5th April.
You can register to attend in person or as a remote attendee.
Agenda here Thread here
........................................................
Other coming events
Ireland in September ''New Frontiers in M.E. - Transforming Patient Safety & Care'' Wednesday 4th September 2019, 5pm to 9pm.
Hope 4 ME & Fibro Northers Ireland is arranging this conference with Brian Hughes, Caroline Kingdon and David Systron as lecturers.
Programme here Thread here
................................................................................
S4ME social media: Facebook, Twitter and You Tube.
News
David Tuller
UC Berkeley crowdfunding has opened its appeal to fund David Tuller's position as a senior fellow in public health and journalism at Berkeley’s Center for Global Public Health for another year. David's main responsibility in this 0.6 position will continue to be his work on ME/CFS. The target is $95,000 to cover salary, benefits and University costs. The appeal closes at the end of April.
Trial By Error: Reporting on ME/CFS and Related Controversies
David reports on his work so far and his plans for the coming year.
Article with appeal here Thread here
Australia $3 million research funding for Chronic Fatigue Syndrome.
The Minister for Health, Greg Hunt MP, has announced an allocation of $3 million for ME/CFS research through the Government's National Health and Medical Research Council.
Press release here Thread here
Australia Representatives of Emerge and ME Australia met with senior executives from the National Disability Insurance Agency, who administer the national disability insurance scheme (NDIS) to discuss how the agency can better support people with ME.
Article here Thread here
UK Parliament Prime Ministers' Questions is a weekly hour where a few MP's ask questions of the PM in the House of Commons. This week Carol Monaghan asked the PM to look into child protection proceedings being taken against families who refuse GET treatment for their very sick children with ME. The PM said she would ask the relevant minister to look into it.
Tweet with link to video here (51 seconds) Thread here
......................................................
In the media
UK Sunday Times readers comments: "The ‘invisible illness’: what it feels like to live with chronic fatigue syndrome or ME"
Three people with ME tell their ME story in a sympathetic article following Ron Liddle's awful article the paper published last week.
Article here Thread here
Sweden Author Karin Alvtegen has written a book about ME and her experiences as a patient. David Tuller has contributed. Alvtegen was interviewed on TV together with Dr Anna Lindquist about the situation for ME patients in Sweden.
Interview here (in Swedish) Thread here
..............................................................
Trial by Error by David Tuller
The CDC's Pathetic Response to Reuters
Dr. Elizabeth Unger told Reuters that the reason the CDC removed CBT/GET as treatment recommendations were that people had "misinterpreted" what it meant. This is an unconvincing claim and CDC should instead have admitted they made a mistake.
Article here Thread here
..............................................................
Articles, podcasts, blogs..
The ME Show Series 2 Episode 9. Gary Burgess interviews Carol Monaghan MP. They talk about the Parliamentary debate, recent articles in UK media, Michael Sharpe, DWP and an ME afternoon tea she's arranged in Glasgow.
MEA article with link to podcast here Thread here
#MEAction A response to Dr Mark Porter's article about ME in the Times (UK) by Robert Saunders.
Although Dr Porter's article was well-intended, Robert points out some misunderstandings and faults which make the article unhelpful.
Article here Thread here
Berkeley Wellness ''Reeducating Doctors About ME/CFS'' by David Tuller.
Article including David Tuller's interview with Dr Steven Olson, Kaiser Permanente Medical Group's regional physician director for Northern California about his better understanding of ME/CFS and plans to educate KP doctors.
Article here Thread here
The Jackson Laboratory USA ''PERSPECTIVES ON ME/CFS - Difficult to diagnose. Difficult to treat. A pain to live with.''
A new section of their website gathers together their recent articles on ME/CFS.
Website here Thread here
Hysterical Women '"Death means we believe you now": dismissed as a neurotic mother'.
A heart breaking guest article by Clare Norton, mother of Merryn Crofts, a severe ME-sufferer who passed away only 21 years old. The article highlights the problems experienced by very sick people with ME and their parents not being believed by medical staff.
Article here Thread here
Video ''Response to Michael Sharpe's claims of harassment''.
A five minute compilation of clips from Parliamentary debates and other publicly available sources challenging Sharpe's narrative.
Video here Thread here and here
...............................................
Biomedical research
PLoSONE "Network structure underpinning (dys)homeostasis in chronic fatigue syndrome; Preliminary findings" by Clark, Newton et al
Samples of 42 patients and 9 controls measuring autonomic nervous system output. Concludes that the underlying network structure of the autonomic system differs from that of controls.
Paper here Thread here
Clinical Therapeutics "Epigenetic Components of ME/CFS Uncover Potential Transposable Element Activation" by Eloy Almenar-Pérez et al.
Literature search evaluating the ME/CFS epigenome landscape. The researchers say they uncovered particular associations of transposable elements and ME/CFS epigenetic hallmarks.
Paper here Thread here
...............................................................
More on the PACE trial
BMC Psychology "Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings" by Carolyn Wilshire and Tom Kindlon.
A thorough and excellent response to the recent Sharpe et al. article that attempted to dismiss the PACE reanalysis paper by Wilshire et al. This article addresses seven arguments and concludes that none were sufficient for the PACE researchers to digress from the trial's pre-registered protocol.
Response here Thread here
..................................................
Psychosocial Research
Frontiers in Pediatrics
''Impaired Health-Related Quality of Life in Adolescent ME/CFS: The Impact of Core Symptoms'' by Rowe et al.
Comparison of patients attending an ME clinic aged 10-23 with healthy controls showed substantially reduced HRQOL - worse than other chronic conditions. Also concludes: ''The findings of this study lend further support to the inclusion of PEM, cognitive impairment, and orthostatic intolerance as core symptoms of pediatric ME/CFS.''
Paper here Thread here
Journal of Behavioural Medicine - Letters to the editor
Two letters pointing out serious flaws in a paper by Ali, Chalder et al published in January. Problems included diagnosis, recovery claims and misuse of correlation as causation to draw erroneous conclusions.
''Fear avoidance in CFS/ME: invalid results'' by Michiel Tack.
Letter here Thread here
''Cognitive-behavioral and graded exercise therapies for chronic fatigue (syndrome) are associated with lower levels of work/school attendance'' by Frank Twisk.
Letter here Thread here
....................................................................
Other research
Journal of Neuroinflammation "Hyperactivation of proprioceptors induces microglia-mediated long-lasting pain in a rat model of CFS" by Masaya Yasui et al.
Rats put under stress were used as an animal model for CFS and conclusions were drawn about pain. CFS is defined in the paper as a 'Functional somatic syndrome'.
Paper here Thread here
.......................................................................
Research news
OMF Funds Collaborative Research Center in Sweden
OMF have announced they will fund the establishment of an ME/CFS Collaborative Research Center at Uppsala University in Sweden to be led by Jonas Bergquist, MD, PhD.
Announcement here Thread here
Solve ME/CFS Initiative introduce a researcher they are funding who is new to ME, Dr. Hector Bonilla. His ongoing study is: “Cross-sectional study to assess the prevalence of APOE e4 alleles in patients with ME/CFS and the association with herpes virus infection”.
Article here Thread here
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Fundraising
David Tuller UC Berkeley is fundraising to continue employing David Tuller. See above news item.
New Zealand Otago University is fundraising for Professor Tate's research. Current projects include energy production and epigenetics.
Donate here Thread here
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Advocacy
New Zealand Invitation to join M.E. Awareness NZ and our Online MillionsMissingNZ Campaign. Public and private Facebook pages have been set up and a social media awareness raising campaign is being planned for International ME Awareness day on 12th May.
Public Facebook page here Thread here
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Coming events - this week in the USA
SMCI ME/CFS Advocacy Week and DC Lobby Day, 2nd to 5th April.
Thread with details here
NIH Accelerating Research on ME/CFS meeting, 4th and 5th April.
You can register to attend in person or as a remote attendee.
Agenda here Thread here
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Other coming events
Ireland in September ''New Frontiers in M.E. - Transforming Patient Safety & Care'' Wednesday 4th September 2019, 5pm to 9pm.
Hope 4 ME & Fibro Northers Ireland is arranging this conference with Brian Hughes, Caroline Kingdon and David Systron as lecturers.
Programme here Thread here
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S4ME social media: Facebook, Twitter and You Tube.
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