-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
News in Brief - February 2019
- Thread starter Trish
- Start date
Week beginning 4th February 2019
News and responses
UK: NHS Health Research Authority on PACE
A letter from the HRA in response to Norman Lamb MP and the UK Parliamentary Science and Technology Committee's Inquiry on Research Integrity has cleared the PACE trial of any problems within its remit, mainly procedures and conflicts of interest. The SMC 'experts', Sharpe et al claim this as a victory for PACE.
NHS HRA letter here SMC 'expert reaction' here Thread here
Not the Science Bit blog by Professor Brian Hughes
''The HRA report does not exonerate the PACE trial, it merely confirms that its Research Ethics approval was in order'' Prof Hughes points out the limitations of the remit of the HRA and describes claims that the report vindicates PACE as and example of eminence based medicine.
Article here Thread here
British Medical Journal
''PACE chronic fatigue trial was properly conducted, says UK research watchdog'' by Nigel Hawkes (freelance journalist).
The BMJ news item summarises the points in the letter to Norman Lamb (see above) and quotes Sharpe and Evans' SMC statements and refer's to David Tuller's blog (describing David as an 'activist'). Hawkes describes the criticisms of PACE as a 'longstanding campaign by activists to discredit it'.
Article here Thread here post #84
...........................................................
Trial By Error by David Tuller
HRA Report Does Not Vindicate PACE
(See item above) Tuller reposts Virology Blog's open letter from last August to The Lancet editor Richard Horton. The criticisms raised in the open letter were not rebutted by the HRA report.
Article here Thread here
A Recap of the School Absence Study
A summary of the issues which led to the ongoing investigation of a number of studies from Professor Crawley.
Article here Thread here post #38
And Another Prebuttal…
Further information about a planned article by a journalist that is likely to feature ''harassment'' claims and criticisms of David Tuller's work. The article was described as imminent, but now appears to have been delayed.
Article here Thread here
.........................................................
More News
Finland Information from tweets: David Tuller gave a talk in Helsinki. Topics included accusations of harassment against patients and himself, and the problems with PACE including Oxford criteria. MP Mika Niikko also spoke supporting better medical care for people with severe ME. People with personal experience also spoke.
Thread here
New Zealand The Canterbury District Health Board is offering a scholarship funded by the local ME patient support group for a doctor to attend the Australian International ME Research Symposium in March. This is part of a project to build medical ME expertise in the local region.
Thread here post #65
Australia The January 31, 2019 Release of the Australian Edition of SNOMED CT (Systematized Nomenclature of Medicine - Clinical Terms) is now available. This national edition incorporates the changes approved and implemented for the July 2018 release of the SNOMED CT International Edition.
Thread here post #162
USA Department of Veterans Affairs
Proposal to update its Schedule for Rating Disabilities to incorporate medical advances and clarify criteria. This includes CFS to take into account the IOM and CDC updates.
Information here Thread here
........................................................
Articles, podcasts, blogs...
PLOS Blogs
''Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much'' by Hilda Bastian, former Cochrane consumer representative and review group coordinating editor.
This excellent article highlights the 'dramatic clash between the ME/CFS patient community and a power base in the evidence community... weaknesses in research methodology and practice ... the relationship between researchers and policy communities... open data in clinical trials' taking PACE and the ME/CFS Cochrane reviews as key examples. She concludes 'the balance should, and ultimately will, tip towards the ME/CFS consumer movement on this particular contested evidence.'
Article here Thread here
The ME Show Series 2 Episode 2. Gary Burgess interviews Linda Tannenbaum, founder and director of the Open Medicine Foundation which raises money to fund biomedical ME research. Linda talks about why she founded it, progress made, the projects they fund and her hopes for the future.
MEA information and podcast link here Thread here
UK: Police Superintendent's Association ''Life in the Slow Lane''
Guest blog post from senior police officer Colin Paine. He has ME/CFS and reflects on how it has affected him and what he has learned from living with it.
Blog post here Thread here
USA: Occupy ME blog by Jennie Spotila
''Who Reviews ME/CFS Applications for NIH?''
Findings of detailed analysis include before 2010 very few of the reviewers had ME/CFS expertise, and a few reviewers have served often and therefore may have had undue influence.
Blog post here Thread here
USA: AMMES The American ME and CFS Society President Erica Verrillo has written an #MEAction articie: ''HOMELESS: How AMMES is Keeping People with ME in their Homes''. AMMES has a social crisis fund which is increasingly needed to help prevent severely affected patients being forced into homelessness.
Article here Thread here
Ireland The University Times (student newspaper) article: ''An Unhealthy Mind Can Lead to An Unhealthy Brain. Let’s Not Forget That'' by Yasmine Tadjine.
Classes CFS as a psychosomatic disorder and says patients can become bedridden or experience excruciating pain for “no reason”. The writer is sympathetic but the explanation is wrong.
Article here Thread here
........................................................
Biomedical Research
Journal of Extracellular Vesicles
Document preview: ''miRNA profiling of circulating EVs in ME/CFS'' by Almenar-Pérez et al.
Small study showed 'a global trend for miRNA down-regulation' and differences between miRNA's in EV's and PBMC's which 'support a model of immune, mitochondrial and neural defects for this disorder.' (Abstract only).
Abstract here Thread here
University of Sussex
''MtDNA population variation in ME/CFS in two populations: A study of mildly deleterious variants'' by Venter et al
Study from two populations found no proven pathogenic mtDNA mutations. Some population variation found that may be relevant to ME/CFS.
Abstract here Thread here
PLOS One
''Impairments in cognitive performance in CFS are common, not related to co-morbid depression but do associate with autonomic dysfunction'' by Newton et al.
Used various cognitive performance tests, HADS and HRV. Findings suggest depression is not responsible for cognitive problems in ME. Impaired autonomic control of heart-rate was shown to associate with reductions in basic processing speed which appeared to be the main factor in cognitive dysfunction.
Paper here Thread here
................................................................
Other research
Journal of Health Psychology
''The 'Cognitive Behavioural Model' of CFS: Critique of a Flawed Model'' Geraghty et al.
The cognitive behavioural model is described as a hypothesis that CFS/ME is perpetuated by patients' irrational beliefs and avoidance behaviours. The authors find this model lacks evidence, and psycho-behavioural therapies based on it have little scientific credibility.
Preview abstract here Thread here
Bioethics
"Ethical classification of ME/CFS in the United Kingdom"
Diane O´Leary PhD (Visiting Fellow at the Rotman Institute of Philosophy in London) provides three arguments to show it is unethical of the U.K to now characterise ME/CFS as a mental health condition.
Paper here (Abstract only) Thread here
.................................................................
Advocacy
#MEAction ''Proud Accessible Activism: The ME Debate Virtual Demonstration''
Article about how internet enables virtual demonstrations and how #MEAction's tools were successfully used in connection with the recent ME debate in the British Parliament.
Article here Thread here
............................................................
Surveys
UK AfME Action for ME survey: Support in School for children with M.E./CFS - a survey for parents and children, closes Mon 18th Feb 2019.
''The results of the survey will also be used to help shape our campaigns and support the work of the Medical Conditions at School Alliance.''
Survey here Thread here
Norway Survey about illness progression
Anyone in Norway with ME, who has had ME or are under assessment for ME are invited to participate in this short survey by the Norwegian ME Association.
More information and link to survey here Thread here post #473
..............................................................
Coming events
Denmark There will be a debate on ME in the Danish Parliament on 12th March 2019.
Thread here
USA NIH: ''Thinking the Future: A Workshop for Young Early Career ME/CFS Investigators'', April 3rd, 2019. This is a satellite event to "Accelerating Research on ME/CFS Workshop" on April 4-5, 2019.
Information here Thread here
............................................................
In Memoriam
Dr. Jonas Blomberg, Emeritus Professor at Uppsala University and much appreciated and well respected ME researcher sadly passed away suddenly.
MEAction article here Thread here (members only)
...........................................................
News and responses
UK: NHS Health Research Authority on PACE
A letter from the HRA in response to Norman Lamb MP and the UK Parliamentary Science and Technology Committee's Inquiry on Research Integrity has cleared the PACE trial of any problems within its remit, mainly procedures and conflicts of interest. The SMC 'experts', Sharpe et al claim this as a victory for PACE.
NHS HRA letter here SMC 'expert reaction' here Thread here
Not the Science Bit blog by Professor Brian Hughes
''The HRA report does not exonerate the PACE trial, it merely confirms that its Research Ethics approval was in order'' Prof Hughes points out the limitations of the remit of the HRA and describes claims that the report vindicates PACE as and example of eminence based medicine.
Article here Thread here
British Medical Journal
''PACE chronic fatigue trial was properly conducted, says UK research watchdog'' by Nigel Hawkes (freelance journalist).
The BMJ news item summarises the points in the letter to Norman Lamb (see above) and quotes Sharpe and Evans' SMC statements and refer's to David Tuller's blog (describing David as an 'activist'). Hawkes describes the criticisms of PACE as a 'longstanding campaign by activists to discredit it'.
Article here Thread here post #84
...........................................................
Trial By Error by David Tuller
HRA Report Does Not Vindicate PACE
(See item above) Tuller reposts Virology Blog's open letter from last August to The Lancet editor Richard Horton. The criticisms raised in the open letter were not rebutted by the HRA report.
Article here Thread here
A Recap of the School Absence Study
A summary of the issues which led to the ongoing investigation of a number of studies from Professor Crawley.
Article here Thread here post #38
And Another Prebuttal…
Further information about a planned article by a journalist that is likely to feature ''harassment'' claims and criticisms of David Tuller's work. The article was described as imminent, but now appears to have been delayed.
Article here Thread here
.........................................................
More News
Finland Information from tweets: David Tuller gave a talk in Helsinki. Topics included accusations of harassment against patients and himself, and the problems with PACE including Oxford criteria. MP Mika Niikko also spoke supporting better medical care for people with severe ME. People with personal experience also spoke.
Thread here
New Zealand The Canterbury District Health Board is offering a scholarship funded by the local ME patient support group for a doctor to attend the Australian International ME Research Symposium in March. This is part of a project to build medical ME expertise in the local region.
Thread here post #65
Australia The January 31, 2019 Release of the Australian Edition of SNOMED CT (Systematized Nomenclature of Medicine - Clinical Terms) is now available. This national edition incorporates the changes approved and implemented for the July 2018 release of the SNOMED CT International Edition.
Thread here post #162
USA Department of Veterans Affairs
Proposal to update its Schedule for Rating Disabilities to incorporate medical advances and clarify criteria. This includes CFS to take into account the IOM and CDC updates.
Information here Thread here
........................................................
Articles, podcasts, blogs...
PLOS Blogs
''Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much'' by Hilda Bastian, former Cochrane consumer representative and review group coordinating editor.
This excellent article highlights the 'dramatic clash between the ME/CFS patient community and a power base in the evidence community... weaknesses in research methodology and practice ... the relationship between researchers and policy communities... open data in clinical trials' taking PACE and the ME/CFS Cochrane reviews as key examples. She concludes 'the balance should, and ultimately will, tip towards the ME/CFS consumer movement on this particular contested evidence.'
Article here Thread here
The ME Show Series 2 Episode 2. Gary Burgess interviews Linda Tannenbaum, founder and director of the Open Medicine Foundation which raises money to fund biomedical ME research. Linda talks about why she founded it, progress made, the projects they fund and her hopes for the future.
MEA information and podcast link here Thread here
UK: Police Superintendent's Association ''Life in the Slow Lane''
Guest blog post from senior police officer Colin Paine. He has ME/CFS and reflects on how it has affected him and what he has learned from living with it.
Blog post here Thread here
USA: Occupy ME blog by Jennie Spotila
''Who Reviews ME/CFS Applications for NIH?''
Findings of detailed analysis include before 2010 very few of the reviewers had ME/CFS expertise, and a few reviewers have served often and therefore may have had undue influence.
Blog post here Thread here
USA: AMMES The American ME and CFS Society President Erica Verrillo has written an #MEAction articie: ''HOMELESS: How AMMES is Keeping People with ME in their Homes''. AMMES has a social crisis fund which is increasingly needed to help prevent severely affected patients being forced into homelessness.
Article here Thread here
Ireland The University Times (student newspaper) article: ''An Unhealthy Mind Can Lead to An Unhealthy Brain. Let’s Not Forget That'' by Yasmine Tadjine.
Classes CFS as a psychosomatic disorder and says patients can become bedridden or experience excruciating pain for “no reason”. The writer is sympathetic but the explanation is wrong.
Article here Thread here
........................................................
Biomedical Research
Journal of Extracellular Vesicles
Document preview: ''miRNA profiling of circulating EVs in ME/CFS'' by Almenar-Pérez et al.
Small study showed 'a global trend for miRNA down-regulation' and differences between miRNA's in EV's and PBMC's which 'support a model of immune, mitochondrial and neural defects for this disorder.' (Abstract only).
Abstract here Thread here
University of Sussex
''MtDNA population variation in ME/CFS in two populations: A study of mildly deleterious variants'' by Venter et al
Study from two populations found no proven pathogenic mtDNA mutations. Some population variation found that may be relevant to ME/CFS.
Abstract here Thread here
PLOS One
''Impairments in cognitive performance in CFS are common, not related to co-morbid depression but do associate with autonomic dysfunction'' by Newton et al.
Used various cognitive performance tests, HADS and HRV. Findings suggest depression is not responsible for cognitive problems in ME. Impaired autonomic control of heart-rate was shown to associate with reductions in basic processing speed which appeared to be the main factor in cognitive dysfunction.
Paper here Thread here
................................................................
Other research
Journal of Health Psychology
''The 'Cognitive Behavioural Model' of CFS: Critique of a Flawed Model'' Geraghty et al.
The cognitive behavioural model is described as a hypothesis that CFS/ME is perpetuated by patients' irrational beliefs and avoidance behaviours. The authors find this model lacks evidence, and psycho-behavioural therapies based on it have little scientific credibility.
Preview abstract here Thread here
Bioethics
"Ethical classification of ME/CFS in the United Kingdom"
Diane O´Leary PhD (Visiting Fellow at the Rotman Institute of Philosophy in London) provides three arguments to show it is unethical of the U.K to now characterise ME/CFS as a mental health condition.
Paper here (Abstract only) Thread here
.................................................................
Advocacy
#MEAction ''Proud Accessible Activism: The ME Debate Virtual Demonstration''
Article about how internet enables virtual demonstrations and how #MEAction's tools were successfully used in connection with the recent ME debate in the British Parliament.
Article here Thread here
............................................................
Surveys
UK AfME Action for ME survey: Support in School for children with M.E./CFS - a survey for parents and children, closes Mon 18th Feb 2019.
''The results of the survey will also be used to help shape our campaigns and support the work of the Medical Conditions at School Alliance.''
Survey here Thread here
Norway Survey about illness progression
Anyone in Norway with ME, who has had ME or are under assessment for ME are invited to participate in this short survey by the Norwegian ME Association.
More information and link to survey here Thread here post #473
..............................................................
Coming events
Denmark There will be a debate on ME in the Danish Parliament on 12th March 2019.
Thread here
USA NIH: ''Thinking the Future: A Workshop for Young Early Career ME/CFS Investigators'', April 3rd, 2019. This is a satellite event to "Accelerating Research on ME/CFS Workshop" on April 4-5, 2019.
Information here Thread here
............................................................
In Memoriam
Dr. Jonas Blomberg, Emeritus Professor at Uppsala University and much appreciated and well respected ME researcher sadly passed away suddenly.
MEAction article here Thread here (members only)
...........................................................
Last edited:
Week beginning 11th February 2019
From the media
Norway
Critical and well researched article on a news site for research about a controversial study on CBT/mindfulness as treatment for ME. Lead author psychiatrist Bjarte Stubhaug is interviewed, so are the professors Kristian Sommerfelt and Karl Johan Tronstad explaining why it was a weak study.
Thread with summary and link to article here post #130
Two unhelpful UK media articles (personal stories)
The Telegraph ''Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome''
Nick Duerden, CFS sufferer and author of a book on his experiences trying alternative therapies is interviewed. Mentions CBT/GET as recommended treatments.
Article here (registration necessary) Thread with summary here
Metro ''My Label and Me: I’m not tired and lazy, I have ME''
James Wilson claims his childhood ME was cured by GET and expects his current relapse to be cured by GET too.
Article here Thread here
...................................................
Trial by Error by David Tuller
BMJ Amends Last Week's PACE Article
BMJ published an article about the recent HRA reviewing of the PACE trial (see last week's news). Supporters of the trial were presented with their academic credentials whilst David Tuller was presented as "an activist". After an email to editorial director of BMJ where Tuller suggests BMJ might have a blind spot on the issue, Tuller's academic affiliations were added to his name in the article.
Article here Thread here
Re-visiting My Questions for PACE Professors
David Tuller re-posts a list of 26 questions concerning the PACE trial. They were initially asked in September 2015, but still haven't been adequately answered.
Article here Thread here
Spotila's Take on NIH Grant Reviewers
A reblogging of Jennia Spotila's recent blog post at Occupy M.E. where she shows that a subset of NIH grant reviewers has had disproportionate influence due to serving many times, and that before 2010 few of the reviewers had ME/CFS expertise.
Article here Thread here post #3
.....................................................
Articles, podcasts blogs..
The ME Show Series 2 Episode 3. Gary Burgess interviews Caroline Kingdon from the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine. She talks about the work they do, what a biobank is, what kind of samples are collected and how they are used in research.
MEA information and podcast link here Thread here post #15
White House Chronicle ''The Deadly Hurt of Loneliness - It Kills''.
Llewellyn King reflects on the particular kind loneliness for ME patients - "Their loneliness is a punishment on top of a punishment, a life sentence in solitary". He calls for better funded research as well as more education and attention.
Article here Thread here
Bustle ''How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging''.
Good article on ME by Carolyn De Lorenzo offering some information and advice for patients in search of medical care.
Article here Thread here
IAFME webinar Alison Rae, CEO of Action CIND presented a talk and discussion on 24th January with Alexandra Heumber, Director of the International Alliance for ME.
The video is now available.
Thread with link to video here post #15
Mike's EU Marathons Slovakia
Mike Harley raises funds and awareness for Invest in ME and biomedical research by running a marathon in every EU country. He has spoken with Michal from Bratislava about the situation for ME patients in Slovakia ahead of his marathon taking place there in April.
Interview here Thread here post #105
#MEAction Several articles from #MEAction are now available in audio form at SoundCloud. New articles will be added.
SoundCloud account here Thread here
...............................................
Biomedical hypothesis
Metabolic Brain Disease
''ME or CFS: how could the illness develop?'' by Puri et al.
The authors put forward a complex biomedical hypothesis about the development and progression of the disease including involvement of intestinal permeability, inflammation, endotoxin tolerance and immune and metabolic abnormalities.
Article here Thread here
.................................................
Psychosocial Research
Current Rheumatology Reports
''The invisible burden of chronic fatigue in the community - a narrative review'' by Fatt et al (including Andrew Lloyd).
Assumes ME/CFS 'sits at the extreme of the fatigue continuum'.
Abstract concludes: 'Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.' Not a recommendation.
Article here Thread here
It's about ME blog by Lou Corsius
''How fatigue researchers reason away nil results and negative findings regarding CBT in CFS and QFS (Q fever fatigue syndrome).''
Corsius demonstrates examples of studies with null results being misrepresented by cherry picking transient small improvements on some subjective scores or rationalising away null outcomes and still concluding CBT should be recommended.
Article here Thread here
......................................................
Other research
Frontiers in Paediatrics
"Impaired Health-Related Quality of Life in Adolescent ME/CFS: The Impact of Core Symptoms" by Rowe et al.
Finds the health-related quality of life (HRQOL) of 55 adolescents with ME/CFS (Fukuda) substantially lower than in healthy controls. Identifies a correlation of overall HRQOL with the frequency of PEM as well as a >90% prevalence of cognitive impairment and orthostatic intolerance.
Paper here Thread here
............................................
Medical Education
#MEAction Unrest continuing medical education program (CME/CE)
#MEAction has teamed up with Time for Unrest Campaign. Unrest can be watched by US healthcare providers which then will receive continuing medical education credits (CME/CE). A toolkit for this purpose has been developed.
Article here Thread here
....................................................
Survey
Columbia University ME/CFS Center for Solutions is designing an app for patients to track their activities and symptoms. Take part in the survey to help inform the app design.
Survey here Thread here
...................................................
Recruitment for research
Stanford Exercise and Immune Profiling ME/CFS
Dr. Jose Montoya and his team are looking for participants for a new study. It includes a baseline screening assessment, collection of blood, stool and saliva, questionnaires and a bicycle exercise tolerance test.
Thread with more information and contact info here
................................................
Future events
ME Awareness Week 6th to 12th May 2019
Australia Events planned for International Awareness Day for Chronic Immunological and Neurological Diseases
UK MEA is offering support for Go Blue for ME events.
MEA article here Thread here
....................................................
From the media
Norway
Critical and well researched article on a news site for research about a controversial study on CBT/mindfulness as treatment for ME. Lead author psychiatrist Bjarte Stubhaug is interviewed, so are the professors Kristian Sommerfelt and Karl Johan Tronstad explaining why it was a weak study.
Thread with summary and link to article here post #130
Two unhelpful UK media articles (personal stories)
The Telegraph ''Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome''
Nick Duerden, CFS sufferer and author of a book on his experiences trying alternative therapies is interviewed. Mentions CBT/GET as recommended treatments.
Article here (registration necessary) Thread with summary here
Metro ''My Label and Me: I’m not tired and lazy, I have ME''
James Wilson claims his childhood ME was cured by GET and expects his current relapse to be cured by GET too.
Article here Thread here
...................................................
Trial by Error by David Tuller
BMJ Amends Last Week's PACE Article
BMJ published an article about the recent HRA reviewing of the PACE trial (see last week's news). Supporters of the trial were presented with their academic credentials whilst David Tuller was presented as "an activist". After an email to editorial director of BMJ where Tuller suggests BMJ might have a blind spot on the issue, Tuller's academic affiliations were added to his name in the article.
Article here Thread here
Re-visiting My Questions for PACE Professors
David Tuller re-posts a list of 26 questions concerning the PACE trial. They were initially asked in September 2015, but still haven't been adequately answered.
Article here Thread here
Spotila's Take on NIH Grant Reviewers
A reblogging of Jennia Spotila's recent blog post at Occupy M.E. where she shows that a subset of NIH grant reviewers has had disproportionate influence due to serving many times, and that before 2010 few of the reviewers had ME/CFS expertise.
Article here Thread here post #3
.....................................................
Articles, podcasts blogs..
The ME Show Series 2 Episode 3. Gary Burgess interviews Caroline Kingdon from the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine. She talks about the work they do, what a biobank is, what kind of samples are collected and how they are used in research.
MEA information and podcast link here Thread here post #15
White House Chronicle ''The Deadly Hurt of Loneliness - It Kills''.
Llewellyn King reflects on the particular kind loneliness for ME patients - "Their loneliness is a punishment on top of a punishment, a life sentence in solitary". He calls for better funded research as well as more education and attention.
Article here Thread here
Bustle ''How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging''.
Good article on ME by Carolyn De Lorenzo offering some information and advice for patients in search of medical care.
Article here Thread here
IAFME webinar Alison Rae, CEO of Action CIND presented a talk and discussion on 24th January with Alexandra Heumber, Director of the International Alliance for ME.
The video is now available.
Thread with link to video here post #15
Mike's EU Marathons Slovakia
Mike Harley raises funds and awareness for Invest in ME and biomedical research by running a marathon in every EU country. He has spoken with Michal from Bratislava about the situation for ME patients in Slovakia ahead of his marathon taking place there in April.
Interview here Thread here post #105
#MEAction Several articles from #MEAction are now available in audio form at SoundCloud. New articles will be added.
SoundCloud account here Thread here
...............................................
Biomedical hypothesis
Metabolic Brain Disease
''ME or CFS: how could the illness develop?'' by Puri et al.
The authors put forward a complex biomedical hypothesis about the development and progression of the disease including involvement of intestinal permeability, inflammation, endotoxin tolerance and immune and metabolic abnormalities.
Article here Thread here
.................................................
Psychosocial Research
Current Rheumatology Reports
''The invisible burden of chronic fatigue in the community - a narrative review'' by Fatt et al (including Andrew Lloyd).
Assumes ME/CFS 'sits at the extreme of the fatigue continuum'.
Abstract concludes: 'Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.' Not a recommendation.
Article here Thread here
It's about ME blog by Lou Corsius
''How fatigue researchers reason away nil results and negative findings regarding CBT in CFS and QFS (Q fever fatigue syndrome).''
Corsius demonstrates examples of studies with null results being misrepresented by cherry picking transient small improvements on some subjective scores or rationalising away null outcomes and still concluding CBT should be recommended.
Article here Thread here
......................................................
Other research
Frontiers in Paediatrics
"Impaired Health-Related Quality of Life in Adolescent ME/CFS: The Impact of Core Symptoms" by Rowe et al.
Finds the health-related quality of life (HRQOL) of 55 adolescents with ME/CFS (Fukuda) substantially lower than in healthy controls. Identifies a correlation of overall HRQOL with the frequency of PEM as well as a >90% prevalence of cognitive impairment and orthostatic intolerance.
Paper here Thread here
............................................
Medical Education
#MEAction Unrest continuing medical education program (CME/CE)
#MEAction has teamed up with Time for Unrest Campaign. Unrest can be watched by US healthcare providers which then will receive continuing medical education credits (CME/CE). A toolkit for this purpose has been developed.
Article here Thread here
....................................................
Survey
Columbia University ME/CFS Center for Solutions is designing an app for patients to track their activities and symptoms. Take part in the survey to help inform the app design.
Survey here Thread here
...................................................
Recruitment for research
Stanford Exercise and Immune Profiling ME/CFS
Dr. Jose Montoya and his team are looking for participants for a new study. It includes a baseline screening assessment, collection of blood, stool and saliva, questionnaires and a bicycle exercise tolerance test.
Thread with more information and contact info here
................................................
Future events
ME Awareness Week 6th to 12th May 2019
Australia Events planned for International Awareness Day for Chronic Immunological and Neurological Diseases
UK MEA is offering support for Go Blue for ME events.
MEA article here Thread here
....................................................
Week beginning 18th February 2019
News
EUROMENE (The European #MECFS Network). The Core Group, Clinical Working Group and Biomarkers Working Group met for two days last week, with academics and clinicians participating from across Europe.
Tweet from UK ME Biobank here Thread here
Cochrane Exercise for CFS Review
''Reply to David Tovey’s letter about the Exercise for CFS review'' by Caroline Struthers of the Oxford University Centre for Statistics in Medicine.
After submitting a complaint to Cochrane about this review last November, Caroline Struthers received an unsatisfactory reply from Cochrane editor in chief, David Tovey. She has now sent an excellent long and detailed response to the Cochrane Governing Board, copied to Tovey and others, explaining more fully the urgency of withdrawing this Exercise review which is being quoted as supporting PACE, for example in the recent HRA report to a Parliamentary Committee.
Article with the letter here Thread here
...................................................
Trial By Error by David Tuller
Cochrane Update, and Caroline Struthers' Latest Letter
A recap of the situation at Cochrane regarding ME. The exercise review, which should have been temporarily withdrawn, is still present. ME is still being housed under Common Mental Disorders despite signals of moving it to another section. Editor-in-chief Dr. Tovey has announced he is leaving Cochrane. It is uncertain how these matters will be left. The article includes the letter from Caroline Struthers to the Cochrane Governing Board (see item above).
Article here Thread here
Professor Sharpe's Retraction Requests
Following the recent UK Health Research Authority's PACE analysis, Professor Sharpe has sent e-mails to at least two US publications requesting correction/retraction of previously published critical articles. In both cases the editors have rejected the requests. The articles are in STAT (by Julie Rehmeyer) and The Conversation (by Prof. Steven Lubet).
Article here Thread here
Letters to Fiona Godlee and Nigel Hawkes
BMJ has added David Tuller's academic credentials to his name in their article about the recent UK Health Research Authority's letter on the PACE trial after having presented him as "an activist". Tuller has sent a new email to editor Fiona Godlee raising other concerns with BMJ. He has also sent an email to the journalist of the article, Nigel Hawkes, pointing towards more compelling aspects of the PACE trial debate.
Article here Thread here
.....................................................
From the media
UK: BBC PIP appeals: "I've been treated like a liar and a fake"
Short video interviewing a young woman with chronic pain, chronic fatigue syndrome and hyper mobility who has gone through an eight-month process and a tribunal in order to get PIP (Personal Independence Payment).
Video here Thread here
.....................................................
Articles, letters, podcasts, blogs, newsletters etc
Letter to NICE The 25% ME group for severe ME sufferers has written a letter to Sir Andrew Dillon, Chief Executive of NICE. In a heartfelt and well reasoned letter the group spell out the severity of symptoms, lack of medical care, and damage done by exercise therapies. They ask NICE to remove the CBT and GET recommendations from the guideline immediately.
Thread with link to letter here
The ME Show Gary Burgess interviews Dr Nigel Speight, paediatrician, about his work helping children with ME and their families, particularly those diagnosed with Fabricated and Induced Illness (FII) and subject to child protection proceedings. He talks of his concern that the psychiatric approach to ME is still so dominant in the UK, believed by 80% of doctors.
Dr Speight is also medical advisor for the 25% group of the most severely affected and has witnessed the lack of medical support and care for the sickest people. For GP's he describes diagnosis as simple and he says patients' need is for validation and support.
MEA article with link to podcast here Thread here
johnthejack blog "Even the Ethics Committee says the PACE authors should share the patient-level data, so why does PLOS ONE not enforce its regulations and compel them to?"
JohnTheJack raises the question why data from the cost-effectiveness analysis of the PACE trial from 2012 in PLOS ONE are not released despite an agreement from the authors to make them available. Includes history and background information on the struggle to get hold of PACE data.
Article here Thread here
Open Medicine Foundation Winter 2019 Newsletter
Newsletter welcoming Chris Armstrong to the OMF team and with updates on news regarding fundraising, advocacy, the Research Symposium in Australia, the OMF Worldwide Tour going to Denmark, and the OMF 'Second Annual May Momentum' for ME awareness month.
Newsletter here Thread here
ME Australia Sasha Nimmo interviews Dr Chris Armstrong, Australian ME researcher, who has moved to OMF as their science liaison. Dr Armstrong will continue his research and his development of an app to track patient data.
Article here Thread here
Royal College of Surgeons ''Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?'' by surgeon and ME patient Nina Muirhead. The article contains her story, information about ME and on the recent parliamentary ME debate as well as offering advice for colleagues about ME.
Article here Thread here
....................................................
Biomedical Research
Biophysical Journal
''Altered Erythrocyte Biophysical Properties in CFS'' by Saha, Davis, et al.
Small study found reduced deformability, lower sedimentation rates and other differences between red blood cells from CFS patients compared to controls.
Paper here Thread here
Frontiers in Pediatrics - Review article
''Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of CFS/ME'' by J. Kerr.
A subset (about half) of CFS/ME patients studied exhibited up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells, and these patients appear to have a more severe disease phenotype. This may explain some immune and neurological abnormalities. More research is needed.
Paper here Thread here
..........................................................
Psychosocial Research and News
Clinical Child Psychology and Psychiatry
''Illness perceptions in adolescents with CFS'' by Cara Haines et al. (Bath/Bristol).
Compared illness perceptions in adolescents with CFS with patients with other physical health conditions (diabetes and arthritis). The authors say differences found in patients' perceptions and lack of personal control should be treated by therapy. Not a recommendation.
Article here Thread here
Frontiers in Paediatrics
''Long Term Follow up of Young People With CFS Attending a Pediatric Outpatient Service'' by K. Rowe.
Follow up questionnaires were sent to several hundred young people who had been diagnosed and received regular care at a Melbourne hospital. The mean illness duration was 5 years, with 68% 'recovered' at 10 years, but this is not clear as there seems to be significant overlap in functional scores for 'recovered' and 'not recovered'. Factors that may affect recovery were looked at without clear conclusions. Many had tried alternative treatments and not found them helpful.
Paper here Thread here
Seminar in Norway Network conference for health personnel working with CFS/ME
Skogli rehabilitation center is organising a seminar next month with, among others, lead author of the contested Cochrane review on Exercise Therapy and CFS, Lillebeth Larun, as one of the lecturers. The participants are advised to read a paper about the alternative treatment Lightning Process in advance. The national competence service for CFS/ME are co-organisers.
Thread with more information here
..........................................................
Medical Education
Harvard Medical School ''Harvard Doctors Reveal -The Best Ways to Manage Chronic Fatigue Syndrome''
This $12 material describes CFS fairly well but the management section recommends unevidenced alternative therapies and psychotherapies.
Not a recommendation.
Information here Thread here
............................................................
Advocacy
#MEAction ''Amy Carlson - An Ally To The ME Community''
Actress Amy Carlson has lost a friend to ME and since been an ally to the ME community. #MEAction encourage people to show their appreciation and to reach out to more potential allies.
Article here Thread here
Norway Petition asking for the resignation of the management for the National Advisory Unit on CFS/ME is finished.
The petition is protesting the Advisory Unit's psychosomatic approach to ME. It reached 7 265 signatures and has now been delivered to the Ministry of Health and Care Services.
Thread with more information here
.............................................................
Coming events
USA CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call. March 11, 2019, 3:00 pm - 4:00 pm Eastern Time.
The agenda includes an update from Dr Unger, and Orthostatic Intolerance with Dr Natelson.
Thread with details here
............................................................
News
EUROMENE (The European #MECFS Network). The Core Group, Clinical Working Group and Biomarkers Working Group met for two days last week, with academics and clinicians participating from across Europe.
Tweet from UK ME Biobank here Thread here
Cochrane Exercise for CFS Review
''Reply to David Tovey’s letter about the Exercise for CFS review'' by Caroline Struthers of the Oxford University Centre for Statistics in Medicine.
After submitting a complaint to Cochrane about this review last November, Caroline Struthers received an unsatisfactory reply from Cochrane editor in chief, David Tovey. She has now sent an excellent long and detailed response to the Cochrane Governing Board, copied to Tovey and others, explaining more fully the urgency of withdrawing this Exercise review which is being quoted as supporting PACE, for example in the recent HRA report to a Parliamentary Committee.
Article with the letter here Thread here
...................................................
Trial By Error by David Tuller
Cochrane Update, and Caroline Struthers' Latest Letter
A recap of the situation at Cochrane regarding ME. The exercise review, which should have been temporarily withdrawn, is still present. ME is still being housed under Common Mental Disorders despite signals of moving it to another section. Editor-in-chief Dr. Tovey has announced he is leaving Cochrane. It is uncertain how these matters will be left. The article includes the letter from Caroline Struthers to the Cochrane Governing Board (see item above).
Article here Thread here
Professor Sharpe's Retraction Requests
Following the recent UK Health Research Authority's PACE analysis, Professor Sharpe has sent e-mails to at least two US publications requesting correction/retraction of previously published critical articles. In both cases the editors have rejected the requests. The articles are in STAT (by Julie Rehmeyer) and The Conversation (by Prof. Steven Lubet).
Article here Thread here
Letters to Fiona Godlee and Nigel Hawkes
BMJ has added David Tuller's academic credentials to his name in their article about the recent UK Health Research Authority's letter on the PACE trial after having presented him as "an activist". Tuller has sent a new email to editor Fiona Godlee raising other concerns with BMJ. He has also sent an email to the journalist of the article, Nigel Hawkes, pointing towards more compelling aspects of the PACE trial debate.
Article here Thread here
.....................................................
From the media
UK: BBC PIP appeals: "I've been treated like a liar and a fake"
Short video interviewing a young woman with chronic pain, chronic fatigue syndrome and hyper mobility who has gone through an eight-month process and a tribunal in order to get PIP (Personal Independence Payment).
Video here Thread here
.....................................................
Articles, letters, podcasts, blogs, newsletters etc
Letter to NICE The 25% ME group for severe ME sufferers has written a letter to Sir Andrew Dillon, Chief Executive of NICE. In a heartfelt and well reasoned letter the group spell out the severity of symptoms, lack of medical care, and damage done by exercise therapies. They ask NICE to remove the CBT and GET recommendations from the guideline immediately.
Thread with link to letter here
The ME Show Gary Burgess interviews Dr Nigel Speight, paediatrician, about his work helping children with ME and their families, particularly those diagnosed with Fabricated and Induced Illness (FII) and subject to child protection proceedings. He talks of his concern that the psychiatric approach to ME is still so dominant in the UK, believed by 80% of doctors.
Dr Speight is also medical advisor for the 25% group of the most severely affected and has witnessed the lack of medical support and care for the sickest people. For GP's he describes diagnosis as simple and he says patients' need is for validation and support.
MEA article with link to podcast here Thread here
johnthejack blog "Even the Ethics Committee says the PACE authors should share the patient-level data, so why does PLOS ONE not enforce its regulations and compel them to?"
JohnTheJack raises the question why data from the cost-effectiveness analysis of the PACE trial from 2012 in PLOS ONE are not released despite an agreement from the authors to make them available. Includes history and background information on the struggle to get hold of PACE data.
Article here Thread here
Open Medicine Foundation Winter 2019 Newsletter
Newsletter welcoming Chris Armstrong to the OMF team and with updates on news regarding fundraising, advocacy, the Research Symposium in Australia, the OMF Worldwide Tour going to Denmark, and the OMF 'Second Annual May Momentum' for ME awareness month.
Newsletter here Thread here
ME Australia Sasha Nimmo interviews Dr Chris Armstrong, Australian ME researcher, who has moved to OMF as their science liaison. Dr Armstrong will continue his research and his development of an app to track patient data.
Article here Thread here
Royal College of Surgeons ''Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?'' by surgeon and ME patient Nina Muirhead. The article contains her story, information about ME and on the recent parliamentary ME debate as well as offering advice for colleagues about ME.
Article here Thread here
....................................................
Biomedical Research
Biophysical Journal
''Altered Erythrocyte Biophysical Properties in CFS'' by Saha, Davis, et al.
Small study found reduced deformability, lower sedimentation rates and other differences between red blood cells from CFS patients compared to controls.
Paper here Thread here
Frontiers in Pediatrics - Review article
''Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of CFS/ME'' by J. Kerr.
A subset (about half) of CFS/ME patients studied exhibited up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells, and these patients appear to have a more severe disease phenotype. This may explain some immune and neurological abnormalities. More research is needed.
Paper here Thread here
..........................................................
Psychosocial Research and News
Clinical Child Psychology and Psychiatry
''Illness perceptions in adolescents with CFS'' by Cara Haines et al. (Bath/Bristol).
Compared illness perceptions in adolescents with CFS with patients with other physical health conditions (diabetes and arthritis). The authors say differences found in patients' perceptions and lack of personal control should be treated by therapy. Not a recommendation.
Article here Thread here
Frontiers in Paediatrics
''Long Term Follow up of Young People With CFS Attending a Pediatric Outpatient Service'' by K. Rowe.
Follow up questionnaires were sent to several hundred young people who had been diagnosed and received regular care at a Melbourne hospital. The mean illness duration was 5 years, with 68% 'recovered' at 10 years, but this is not clear as there seems to be significant overlap in functional scores for 'recovered' and 'not recovered'. Factors that may affect recovery were looked at without clear conclusions. Many had tried alternative treatments and not found them helpful.
Paper here Thread here
Seminar in Norway Network conference for health personnel working with CFS/ME
Skogli rehabilitation center is organising a seminar next month with, among others, lead author of the contested Cochrane review on Exercise Therapy and CFS, Lillebeth Larun, as one of the lecturers. The participants are advised to read a paper about the alternative treatment Lightning Process in advance. The national competence service for CFS/ME are co-organisers.
Thread with more information here
..........................................................
Medical Education
Harvard Medical School ''Harvard Doctors Reveal -The Best Ways to Manage Chronic Fatigue Syndrome''
This $12 material describes CFS fairly well but the management section recommends unevidenced alternative therapies and psychotherapies.
Not a recommendation.
Information here Thread here
............................................................
Advocacy
#MEAction ''Amy Carlson - An Ally To The ME Community''
Actress Amy Carlson has lost a friend to ME and since been an ally to the ME community. #MEAction encourage people to show their appreciation and to reach out to more potential allies.
Article here Thread here
Norway Petition asking for the resignation of the management for the National Advisory Unit on CFS/ME is finished.
The petition is protesting the Advisory Unit's psychosomatic approach to ME. It reached 7 265 signatures and has now been delivered to the Ministry of Health and Care Services.
Thread with more information here
.............................................................
Coming events
USA CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call. March 11, 2019, 3:00 pm - 4:00 pm Eastern Time.
The agenda includes an update from Dr Unger, and Orthostatic Intolerance with Dr Natelson.
Thread with details here
............................................................
Week beginning 25th February 2019
News
Medscape/CDC
"Chronic Fatigue Syndrome: It's Real, and We Can Do Better"
Dr. Elizabeth Unger from Centers for Disease Control and Prevention (CDC) with a five minute video for health personnel about their update from last summer of their web content on ME. She emphasises it's a biological disease, the importance of validation and of preventing harm triggered by PEM.
Video here Thread here
..........................................................
Trial by Error by David Tuller
''The cost of MUS''.
David reiterates his concern that Professor Chew-Graham (a professor of general practice research and a key player in the development of NHS policy for people with MUS) repeatedly uses a misleading statistic, also quoted by others. The cost of patients with MUS to NHS England is estimated at about £3 billion annually. She states this is 10% of the whole NHS budget, not just that for working age people. The NHS England budget in 2015/16 was £116.4 billion. David has written to Prof Chew-Graham to ask for this to be corrected but had no response.
Article here Thread here
.......................................................
Articles, podcasts, blogs, interviews etc
The ME Show Series 2 Episode 5.
Gary Burgess speaks to Sue Pemberton, an occupational therapist who runs the private Yorkshire Fatigue Clinic commissioned to treat NHS ME patients. She recognises ME as a biological illness and does not use GET or fear avoidance based CBT. She helps patients with all levels of severity, focusing on stabilising symptoms, restorative rest, symptomatic treatment, and helping patients give themselves permission to do less. Thread discussion suggests some concerns.
MEA page with podcast links here Thread here
The Irish Times
Chronic fatigue syndrome: "It was like a switch had been flipped. I couldn't stand up".
Sympathetic article and video interview with Rosa Devine, an aspiring dancer who became ill with ME when she was 16. She started drawing comics and has completed a degree in visual communications. She talks about how it has been combining that with a chronic illness.
Article here Thread here
The Jackson Laboratory
''Solving the mystery of Chronic Fatigue Syndrome''
Feature article about the research taking place at the JAX ME/CFS Collaborative Center. Interviews with Derya Unutmaz and assistant professor Julia Oh, as well as Suzanne Vernon, research director of Bateman Horne Center and Lucinda Bateman. Includes videos about ME and researcher Julia Oh.
Article here Thread here
Finland - David Tuller interview
''The PACE Trial and why CFS patients don't get treatment''
David Tuller was interviewed by ME/CFS-Kanava during his recent stay in Helsinki, Finland. The interview gives a good overview of aspects of the PACE trial and why it's so problematic. Duration: 14 minutes
Thread with video interview here
Podcast 'It's not all about ME'.
Paddy, who has ME, chats about his experiences living with ME in a series of weekly podcasts. Sometimes he includes invited guests.
Podcasts here Thread here
..........................................................
Medical Education Resources
Medscape
''Diagnosing ME/CFS: The Experts Weigh In'' Authors: Lucinda Bateman, MD; Natalie Azar, MD; Nancy Klimas, MD; José Montoya, MD.
CME (Continuing Medical Education) resources to help doctors diagnose ME/CFS using IOM criteria.
Medscape article here Thread here
MSMS Webinars
Michigan State Medical Society has produced two CME webinars by Lucinda Bateman, MD. The subjects are diagnosis and treatment of ME/CFS.
Digital Journal press release here Thread with links here
And the bad news...
Prescriber
Drug review: ''Prescribing for patients with chronic fatigue syndrome'' by Bhatti & Bhatti.
Article based on the NICE guidelines recommends GET/CBT as 'effective management'. The main focus is on diagnosis and drug prescribing in primary care for symptoms including depression, anxiety, sleep and pain. The clinic run by these doctors is under investigation by the Care Quality Commission and has been rated inadequate. Not a recommendation.
Article here CQC link here Thread here
...........................................................
Biomedical research
From Pub Med 2018, Article in Chinese.
''Comparison of differential metabolites in urine of the middle school students with CFS before and after exercise'' by Chi et al.
Some differences from controls found in urine of a small sample of male students with CFS, both before and after a short exercise challenge, suggesting disordered metabolic pathways.
Abstract in English here Thread here
Fatigue: Biomedicine, Health and Behaviour
Short Article: ''The role of mitochondria in ME/CFS: a perspective''by Tomas and Elson.
Some studies have shown problems with energy metabolism in people with ME, suggesting there might be a problem with the mitochondria.
Small studies have shown that people with ME do not have known mitochondrial disease mutations. Larger studies are needed.
Article here Thread here
PeerJ
''Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types'' ' by C. Tomas et al. (including J. Newton)
In a small study muscle and blood cells were used to investigate 'the activity of specific components of mitochondrial respiration by looking at individual complex activity and pathways'. No significant differences were found between CFS (Fukuda criteria) and health controls.
The abstract concludes: ''The lack of difference in complex activity in CFS PBMCs suggests that the previously observed mitochondrial dysfunction in whole PBMCs is due to causes upstream of the mitochondrial respiratory chain.''
Paper here Thread here
.............................................................
Other research and letters to the editor
Clinical Therapeutics
''ME/CFS and Fibromyalgia: Definitions, Similarities, and Differences" by B. Natelson.
Despite overlap in fibromyalgia and ME/CFS, Natelson views them as different illnesses which suggests different pathophysiological processes and thus treatments.
Paper here (paywalled) Thread here
Journal of Translational Medicine
Increased risk of CFS in patients with inflammatory bowel disease: a population-based retrospective cohort study (2019) Tsai et a
Taiwanese study showed increased risk of CFS (Fukuda criteria) in patients with IBD, especially Crohn's disease.
Paper here Thread here
Archives of Disease in Childhood
"Epidemiology of paediatric CFS in Australia" by Sara Knight et al
Findings suggested that Australian incidence in children under 10 years is very low. Incidence of CFS in older children is more unclear with variability between geographical regions. Suggests improving equity of care for children with CFS may be required.
Paper here Thread here
International Journal of Occupational Medicine and Environmental Health
''The relationship between CFS, burnout, job satisfaction, social support and age among academics at a tertiary institution''
Questionnaire based study of South African academics found burnout and CFS are different, thought there are some overlaps.
Paper here Thread here
Journal of Psychosomatic Research
''Patients with functional disorders want a proper diagnosis'' by Michiel Tack.
A good response to a letter to the editor by the director of Danish Health Authority. Tack argues why ME/CFS should be kept as a diagnosis of its own instead of being included in the umbrella term functional disorders.
Tack's letter to the editor here Thread here post #18
Psychology and Health
''Perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome and their parents: a preliminary investigation in a case control study nested within a cohort'' by Loades, Chalder et al.
What can I say? On the plus side: ''Adolescents with CFS did not consistently report higher levels of perfectionism and unhelpful beliefs about emotions than adolescents with asthma or healthy adolescents.'' On the minus side, it's back to blaming parents and making speculations not supported by the data. NOT a recommendation.
Article here Thread here
...............................................................
Research protocols and study recruitment
BMJ Open Paediatrics
''Association between child maltreatment and central sensitivity syndromes: a systematic review protocol'' by Chandan et al.
Planned meta analysis of research papers that look at ''a potential association between child maltreatment and the development of a selection of somatic and visceral central sensitivity syndromes''. The list includes CFS.
Protocol here (open access) Thread here
Royal College of Paediatrics and Child Health, British Paediatric Surveillance Unit team.
''BPSU study - Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME)''.
Esther Crawley is doing an epidemiological study of the prevalence and treatment of 'severe' CFS as assessed by paediatricians. It includes a one year follow up.
Details here Thread here
Australia Southern Cross University
''CFS participants wanted for aquatic exercise trial'' investigating the benefits (or otherwise) of low intensity self paced aquatic exercise.
Details here Thread here Thread on pilot study here
...........................................................
Advocacy
Solve ME/CFS Initiative 'Register now for the EmPOWER M.E. Roundtable Livestream!' Tuesday April 2, 9:00am - 12:30pm, Bethesda, Maryland, USA
Sessions: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome” and “Advocacy: Your Story, Your Impact”.
Registration to watch live here Thread here
#MEAction ''Announcing #MillionsMissing 2019! Join us!''
Sunday May 5th to Sunday May 12th.
#MEAction invites people to Register so that action can be coordinated.
Information here Thread here
.....................................................
In memory
MEA article in memory of Pauline Ovenden
''Tribute paid to M.E. advocate and Royal Free veteran Pauline Ovenden who died recently''.
Pauline Ovenden, a nurse, was a survivor of the ME outbreak in 1955 at the Royal Free Hospital, London. She founded a local support group and was part of a team that promoted a set of guidelines to local health authorities about M.E.
MEA article here Thread here (members only)
.............................................................................
S4ME social media: Facebook, Twitter and You Tube.
...............................................................................
News
Medscape/CDC
"Chronic Fatigue Syndrome: It's Real, and We Can Do Better"
Dr. Elizabeth Unger from Centers for Disease Control and Prevention (CDC) with a five minute video for health personnel about their update from last summer of their web content on ME. She emphasises it's a biological disease, the importance of validation and of preventing harm triggered by PEM.
Video here Thread here
..........................................................
Trial by Error by David Tuller
''The cost of MUS''.
David reiterates his concern that Professor Chew-Graham (a professor of general practice research and a key player in the development of NHS policy for people with MUS) repeatedly uses a misleading statistic, also quoted by others. The cost of patients with MUS to NHS England is estimated at about £3 billion annually. She states this is 10% of the whole NHS budget, not just that for working age people. The NHS England budget in 2015/16 was £116.4 billion. David has written to Prof Chew-Graham to ask for this to be corrected but had no response.
Article here Thread here
.......................................................
Articles, podcasts, blogs, interviews etc
The ME Show Series 2 Episode 5.
Gary Burgess speaks to Sue Pemberton, an occupational therapist who runs the private Yorkshire Fatigue Clinic commissioned to treat NHS ME patients. She recognises ME as a biological illness and does not use GET or fear avoidance based CBT. She helps patients with all levels of severity, focusing on stabilising symptoms, restorative rest, symptomatic treatment, and helping patients give themselves permission to do less. Thread discussion suggests some concerns.
MEA page with podcast links here Thread here
The Irish Times
Chronic fatigue syndrome: "It was like a switch had been flipped. I couldn't stand up".
Sympathetic article and video interview with Rosa Devine, an aspiring dancer who became ill with ME when she was 16. She started drawing comics and has completed a degree in visual communications. She talks about how it has been combining that with a chronic illness.
Article here Thread here
The Jackson Laboratory
''Solving the mystery of Chronic Fatigue Syndrome''
Feature article about the research taking place at the JAX ME/CFS Collaborative Center. Interviews with Derya Unutmaz and assistant professor Julia Oh, as well as Suzanne Vernon, research director of Bateman Horne Center and Lucinda Bateman. Includes videos about ME and researcher Julia Oh.
Article here Thread here
Finland - David Tuller interview
''The PACE Trial and why CFS patients don't get treatment''
David Tuller was interviewed by ME/CFS-Kanava during his recent stay in Helsinki, Finland. The interview gives a good overview of aspects of the PACE trial and why it's so problematic. Duration: 14 minutes
Thread with video interview here
Podcast 'It's not all about ME'.
Paddy, who has ME, chats about his experiences living with ME in a series of weekly podcasts. Sometimes he includes invited guests.
Podcasts here Thread here
..........................................................
Medical Education Resources
Medscape
''Diagnosing ME/CFS: The Experts Weigh In'' Authors: Lucinda Bateman, MD; Natalie Azar, MD; Nancy Klimas, MD; José Montoya, MD.
CME (Continuing Medical Education) resources to help doctors diagnose ME/CFS using IOM criteria.
Medscape article here Thread here
MSMS Webinars
Michigan State Medical Society has produced two CME webinars by Lucinda Bateman, MD. The subjects are diagnosis and treatment of ME/CFS.
Digital Journal press release here Thread with links here
And the bad news...
Prescriber
Drug review: ''Prescribing for patients with chronic fatigue syndrome'' by Bhatti & Bhatti.
Article based on the NICE guidelines recommends GET/CBT as 'effective management'. The main focus is on diagnosis and drug prescribing in primary care for symptoms including depression, anxiety, sleep and pain. The clinic run by these doctors is under investigation by the Care Quality Commission and has been rated inadequate. Not a recommendation.
Article here CQC link here Thread here
...........................................................
Biomedical research
From Pub Med 2018, Article in Chinese.
''Comparison of differential metabolites in urine of the middle school students with CFS before and after exercise'' by Chi et al.
Some differences from controls found in urine of a small sample of male students with CFS, both before and after a short exercise challenge, suggesting disordered metabolic pathways.
Abstract in English here Thread here
Fatigue: Biomedicine, Health and Behaviour
Short Article: ''The role of mitochondria in ME/CFS: a perspective''by Tomas and Elson.
Some studies have shown problems with energy metabolism in people with ME, suggesting there might be a problem with the mitochondria.
Small studies have shown that people with ME do not have known mitochondrial disease mutations. Larger studies are needed.
Article here Thread here
PeerJ
''Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types'' ' by C. Tomas et al. (including J. Newton)
In a small study muscle and blood cells were used to investigate 'the activity of specific components of mitochondrial respiration by looking at individual complex activity and pathways'. No significant differences were found between CFS (Fukuda criteria) and health controls.
The abstract concludes: ''The lack of difference in complex activity in CFS PBMCs suggests that the previously observed mitochondrial dysfunction in whole PBMCs is due to causes upstream of the mitochondrial respiratory chain.''
Paper here Thread here
.............................................................
Other research and letters to the editor
Clinical Therapeutics
''ME/CFS and Fibromyalgia: Definitions, Similarities, and Differences" by B. Natelson.
Despite overlap in fibromyalgia and ME/CFS, Natelson views them as different illnesses which suggests different pathophysiological processes and thus treatments.
Paper here (paywalled) Thread here
Journal of Translational Medicine
Increased risk of CFS in patients with inflammatory bowel disease: a population-based retrospective cohort study (2019) Tsai et a
Taiwanese study showed increased risk of CFS (Fukuda criteria) in patients with IBD, especially Crohn's disease.
Paper here Thread here
Archives of Disease in Childhood
"Epidemiology of paediatric CFS in Australia" by Sara Knight et al
Findings suggested that Australian incidence in children under 10 years is very low. Incidence of CFS in older children is more unclear with variability between geographical regions. Suggests improving equity of care for children with CFS may be required.
Paper here Thread here
International Journal of Occupational Medicine and Environmental Health
''The relationship between CFS, burnout, job satisfaction, social support and age among academics at a tertiary institution''
Questionnaire based study of South African academics found burnout and CFS are different, thought there are some overlaps.
Paper here Thread here
Journal of Psychosomatic Research
''Patients with functional disorders want a proper diagnosis'' by Michiel Tack.
A good response to a letter to the editor by the director of Danish Health Authority. Tack argues why ME/CFS should be kept as a diagnosis of its own instead of being included in the umbrella term functional disorders.
Tack's letter to the editor here Thread here post #18
Psychology and Health
''Perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome and their parents: a preliminary investigation in a case control study nested within a cohort'' by Loades, Chalder et al.
What can I say? On the plus side: ''Adolescents with CFS did not consistently report higher levels of perfectionism and unhelpful beliefs about emotions than adolescents with asthma or healthy adolescents.'' On the minus side, it's back to blaming parents and making speculations not supported by the data. NOT a recommendation.
Article here Thread here
...............................................................
Research protocols and study recruitment
BMJ Open Paediatrics
''Association between child maltreatment and central sensitivity syndromes: a systematic review protocol'' by Chandan et al.
Planned meta analysis of research papers that look at ''a potential association between child maltreatment and the development of a selection of somatic and visceral central sensitivity syndromes''. The list includes CFS.
Protocol here (open access) Thread here
Royal College of Paediatrics and Child Health, British Paediatric Surveillance Unit team.
''BPSU study - Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME)''.
Esther Crawley is doing an epidemiological study of the prevalence and treatment of 'severe' CFS as assessed by paediatricians. It includes a one year follow up.
Details here Thread here
Australia Southern Cross University
''CFS participants wanted for aquatic exercise trial'' investigating the benefits (or otherwise) of low intensity self paced aquatic exercise.
Details here Thread here Thread on pilot study here
...........................................................
Advocacy
Solve ME/CFS Initiative 'Register now for the EmPOWER M.E. Roundtable Livestream!' Tuesday April 2, 9:00am - 12:30pm, Bethesda, Maryland, USA
Sessions: “Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome” and “Advocacy: Your Story, Your Impact”.
Registration to watch live here Thread here
#MEAction ''Announcing #MillionsMissing 2019! Join us!''
Sunday May 5th to Sunday May 12th.
#MEAction invites people to Register so that action can be coordinated.
Information here Thread here
.....................................................
In memory
MEA article in memory of Pauline Ovenden
''Tribute paid to M.E. advocate and Royal Free veteran Pauline Ovenden who died recently''.
Pauline Ovenden, a nurse, was a survivor of the ME outbreak in 1955 at the Royal Free Hospital, London. She founded a local support group and was part of a team that promoted a set of guidelines to local health authorities about M.E.
MEA article here Thread here (members only)
.............................................................................
S4ME social media: Facebook, Twitter and You Tube.
...............................................................................