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News in Brief - July 2018

Discussion in 'Weekly ME News in Brief' started by Trish, Jul 8, 2018.

  1. Trish

    Trish Moderator Staff Member

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    ME/CFS News in Brief July 2018

    This thread includes a post for each week in July 2018. Scroll down to find the current week.
     
    Marit @memhj, Kitty, Lisa108 and 2 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Week beginning 2nd July 2018

    News

    Unrest
    The film has won the PBS Independent Lens Audience Award for 2017/18. Congratulations to Jennifer Brea (@JenB) and all concerned.
    Article here Thread here
    ...............................................................

    Articles, videos, blogs, open letters, book

    Trial By Error by David Tuller
    ''Professor Sharpe’s Pre-Hearing Briefing for Monaghan''
    The briefing repeats all their old false arguments that PACE is good science.
    Article here Thread here
    ''My Letter to Fiona Godlee'' the editor-in-chief at The BMJ and editorial director of BMJ. Subject line: ''BMJ’s failure to address problems with pediatric studies of ME/CFS.''
    Article here Thread here

    Solve ME/CFS Initiative CEO Carol Head has written an excellent open letter to Forbes magazine to refute an ignorant article they published about ME claiming anti-PACE is anti-science.
    Letter here Thread here

    Submission to Scottish Parliament in support of the ME petition, by Professor @Jonathan Edwards.
    PDF here Thread here

    The ME Show Episode 9. @Gary Burgess interviews Chantelle Parry who set up an M.E. friendship group in Gloucestershire, as well as to Rachel Ephgrave who is one of more than 100 members of the group.
    Video links here Thread here post #152

    Centre for Welfare Reform (UK) Discussion paper: ''Reclaiming ‘Chronic Illness’ An introduction to the Chronic Illness Inclusion Project'' by Catherine Hale.
    38 pages. From the summary: ''In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or disablism (social oppression).''
    Article here Thread here

    Book ''A Girl behind dark glasses'' by Jessica Taylor-Bearman is out this week. Jessica (@jayletay) has had severe ME for many years, and featured in Unrest.
    Female first article here Thread here
    ....................................................................

    Biomedical Research

    Nature
    ''Insights into ME/CFS phenotypes through comprehensive metabolomics'' by Lipkin et al.
    ''We report biomarker discovery and topological analysis of plasma metabolomic, fecal bacterial metagenomic, and clinical data from 50 ME/CFS patients and 50 healthy controls.''
    Article here Thread here

    PLOS ONE ''Intracranial compliance is associated with symptoms of orthostatic intolerance in chronic fatigue syndrome'' by Finkelmeyer, Newton et al.
    Paper here Thread here

    Diagnostics ''Neural Indicators of Fatigue in Chronic Diseases: A Systematic Review of MRI Studies'' by Goni et al.
    Concludes: ''Given the different designs, methodologies and variable results, we conclude that there are currently no well-defined brain indicators of fatigue in chronic diseases.''
    Article here Thread here
    .............................................................

    Biomedical researcher videos

    OMF
    Short video of Dr Ron Davis talking about the new NIH funded 5 year study led by himself and Dr Mark Davis at Stanford University.
    Video here Thread here

    Advances in ME/CFS Research Video interview with Dr David Systrom of Boston who has found evidence of small-fiber polyneuropathy (SFPN) in ME and fibromyalgia, and is carrying out drug trials on Fibromyalgia patients.
    Video here Thread here
    .................................................................

    Other research

    Journal of Bioethical Inquiry ''Are ME/CFS Patient Organizations “Militant”?''by Blease and Geraghty.
    Describes the long history of scientific disagreement and the accusations of ''militant'' patient activism. The authors draw parallels with 1980's AIDS activism in the USA which involved both public activism and engagement with science.
    Concludes: ''We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.''
    Paper here Thread here

    Fatigue: Biomedicine, Health & Behavior ''Latent class analysis of a heterogeneous international sample of patients with ME/CFS'' by Huber, Sunnquist & Jason.
    Detailed questionnaire based study of over 1000 pwME found subtypes based on symptoms that they suggest may help focus future research and treatments.
    Article here Thread here

    Journal of Health Psychology ''Meta-analysis investigating post-exertional malaise between patients and controls'' by Brown and Jason.
    Concludes that PEM should be considered a cardinal symptom of ME/CFS.
    Article here Thread here

    Journal of Health Science and Education ''The Importance of Screening for Suicide Risk in Chronic Invisible Illness'' by Cathy Pederson.
    Describes the patient experience well. Recommends doctors believe the patient, properly treat physical symptoms and screen for suicidal thoughts and offer appropriate help.
    Article here Thread here
    ........................................................

    Quacks, charlatans and other dangerous creatures

    Journal of Experiential Psychotherapy (not a serious scientific journal) ''Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach'' by Parker et al.
    A sales pitch masquerading as science. Not a recommendation.
    Article here Thread here
    ............................................................

    PDF version here
    ............................................................
     
    Last edited: Jul 8, 2018
    MSEsperanza, Wonko, TiredSam and 13 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Week beginning 9th July 2018

    News


    USA CDC Information for Healthcare Providers on ME/CFS updated.
    Includes presentation, clinical course, diagnosis, clinical care and historical case definitions and criteria.
    Some key points - ME/CFS is a biological illness, PEM a core symptom, clinical care based on symptomatic treatment, pacing (staying within energy envelope) Aerobic exercise can cause harm. No mention of CBT or GET.
    Our thread discussion raises some issues, but it is a great improvement.
    CDC link here Thread here
    Medscape ''CDC Launches New ME/CFS Guidance for Clinicians'' by Miriam Tucker.
    Article here
    ME Association ''America calls for a cultural shift in the way care is offered to ME/CFS patients''
    Article here
    ........................................................................

    Articles, interviews, letters, blogs

    Sweden
    Excellent article ''Mats Reimer continues to convey an incorrect picture of ME / CFS'' by Sten Helmfrid published on Research Gate refuting an opinion piece by BPS proponent Mats Reimer that was published on the Swedish National TV website.
    Article here Thread here

    Trial By Error by David Tuller
    ''Do All Clinical Trial Experts Love PACE?''
    Reiterates criticisms of PACE from clinical trial experts in response to a tweet from Prof. Michael Sharpe.
    Article here Thread here
    ''Yet Another Appeal to The Lancet, With More On Board''
    The letter sent in June has been re-sent with additional signatories - 10 UK Members of Parliament and about 60 patient and advocacy organisations from around the world (including Science for ME).
    Letter here Thread here
    ''Waiting for Godlee''
    Another letter to the BMJ editor about the SMILE trial of LP, an ambiguous BMJ statement, and SMILE being used to promote LP.
    Article here Thread here
    ''My Letter to Parliament’s Science and Technology Committee''
    Raises the issues of research integrity with PACE and 2 Crawley papers.
    Article here Thread here

    Jaxmecfs - Advocate Spotlight: Charmian Proskauer, President of the Massachusetts CFIDS Association.
    Article here Thread here

    Blog article ''The “X” factors of ME.'' by Anil van der Zee.
    Discusses the problems pwME have with the psychologising of ME/CFS, how this happened and the treatments based on this false theory.
    Article here Thread here (members only)
    ..................................................................

    Research news

    SMCI updates July 2018. Includes an article by Katya Lavine who attended the sessions for young scientists at the recent IiME conference, and preliminary reports from 2 SMCI funded research teams:
    Team 1: Neuroimaging Study Provides Evidence of Inflammatory Processes in the Brains of Individuals with ME/CFS led by Dr Jarred Younger
    Team 5: Molecular Mechanism Behind Mitochondrial Dysfunction Indicated, for Further Study led by Dr. Bhupesh Prusty, a virologist looking at herpes virus HHP-6 effects on mitochondrial function.
    Article here Thread here
    ................................................................

    Research

    Asian Pacific J. Allergy, Immunol. ''Reduced glycolytic reserve in isolated natural killer cells from ME/CFS patients: A preliminary investigation'' by Nguyen et al.
    Small study suggests resting NK cells from ME/CFS patients have reduced ability to increase glycolytic flux to respond to high energetic demands for ATP production.
    Paper here Thread here

    Journal of Health Psychology ''Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness'' by Devendorf et al.
    Analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Topics raised included severe disability, restructured lives, serious pain, loss, stigma, conflict and feeling trapped by lack of treatments.
    Paper here Thread here
    .......................................................................

    Action

    USA
    PWME & healthy controls wanted for Cornell (Hanson) NIH collaborative work - CA & NY. 5 hour exercise capacity and activity level study.
    Recruitment leaflet here Thread here
    ..........................................................................
     

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