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News in Brief - February 2019

Discussion in 'Weekly ME News in Brief' started by Trish, Feb 10, 2019.

  1. Trish

    Trish Committee Member

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    This thread has a Science for ME News In Brief post for each week in February 2019 written by @Trish and @Kalliope. Scroll down to find this week's news.
     
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  2. Trish

    Trish Committee Member

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    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
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    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
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    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
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    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: Feb 10, 2019
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  3. Trish

    Trish Committee Member

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    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
    ....................................................
     
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