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News in Brief - August 2019

Discussion in 'Weekly ME News in Brief' started by Trish, Aug 11, 2019.

  1. Trish

    Trish Moderator Staff Member

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

    Trish Moderator Staff Member

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    Week beginning 5th August 2019

    Severe ME Week and Severe ME Day 8th August

    On a day to raise awareness of severe ME, organisations and individuals around the world have published articles and patients' stories. Below are some examples. More are listed and linked on the thread.
    Thread here

    MEAction "Today, we honor and remember those with severe M.E."
    The article contains some of the stories the patient community has submitted about what it's like to live with severe ME.
    Article here

    Emerge Australia gives information about its severe ME day campaign.
    Article here

    #MillionsMissing Germany published a new video in honor of Severe ME Day. It features (among others) a person with severe ME, Dr Bupesh Prusty from Würzburg university and the #MillionsMissing protest in Munich.
    Thread with link here

    USA Open Medicine Foundation ''A message from Whitney on Severe ME Day'' Whitney Dafoe, who has very severe ME, has communicated a short message of support to other severe ME sufferers.
    Article here

    UK ME Association ''Press release: Severe ME Day - M.E. sufferers hit out at "humiliating" DWP benefit assessments''.
    Expresses concern over the very difficult process to obtain benefits and how this can make patients deteriorate even further. Presents four severe ME patients and their struggle with the system.
    Press release here

    The ME Show Gary Burgess has made a special podcast episode for Severe ME Week. It includes an interview with severe ME patient and blogger Jo Moss (A Journey Through the Fog) and with the ME Association Welfare Rights Adviser Ann Innes, who offers insight and some advice on the process of obtaining benefits.
    Podcast episode here

    ME Association guest blogs:
    "Severe ME Day: A Call to Act with Truth and Integrity"
    Greg Crowhurst looks back on a 26 year long fight for patients with severe ME and concludes: "despite all our best efforts, despite all the deaths, nothing has happened in my view to demonstrably change the situation for the better".
    Guest blog here

    "Severe ME Day: Life in a Nursing Home, Light Sensitivity and Very Severe M.E."
    Under the pseudonym Eira Stuart, a severe ME patient tells about the added trauma health care personel without knowledge about severe ME can bring to an already very vulnerable situation.
    Guest blog here

    ''My daughter and the pervasive dangers of PACE in paediatric M.E.'' by Adam Johnson.
    A chillingly distressing account of the mistreatment of a girl with severe M.E. and her family by health and social services in the UK.
    Article here Thread here

    "There's no point in me having a Netflix subscription or an Audible account"
    Anna Wood gives a good personal description of cognitive symptoms that come with ME and the big limitations they bring.
    Article here Thread here

    Articles, blogs, videos...

    Massachusetts ME / CFS & FM Association
    reports that Frontiers Spotlight Award candidates include the 'Advances in ME/CFS Research and Clinical Care' research topic. The winning team of topic editors receives US $100,000 to organize an international scientific conference on the theme of their successful research topic. Reader interest (clicks, downloads and shares) influence the decision.
    Thread with details here

    SCOPE The disability equality charity in England and Wales, SCOPE, has provided a Q&A about ME with Dr. Charles Shepherd, medical advisor of the ME Association.
    Article here Thread here

    The Guardian’s Science Weekly podcast and the Cochrane review
    On 08/08/2019 the Guardian’s Science Weekly podcast published an update of their episode titled: “What role should the public play in science?” The podcast was aired on November 2018 and gave the impression that Cochrane was giving in to pressure from activists to withdraw its review on exercise therapy for ME/CFS. The recent update seems to admit that this narrative was incorrect as details of the complaint to Cochrane “have been made public and they show that it was based in science.” Michiel Tack wrote a blog post summarizing these recent events.
    Podcast here Thread here, Blog here

    Biomedical Research

    Nature - Scientific Reports

    ''Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test'' by Newton, Morton, et al.
    The mitochondrial energy score (MES) protocol, developed by the Myhill group, is marketed as a diagnostic test for CFS/ME. This study attempted to replicate the test and found no difference from healthy controls. They also tested it on healthy samples stored for 24 hours and found variable results that might account for the apparent results in Dr Myhill's original study. Conclusion: The test doesn't work.
    Paper here Thread here

    Biomedical review and hypothesis articles


    ''ME/CFS: A comprehensive review'' by Rivera, Lidbury et al.
    This long article takes a detailed look at what is known about the pathophysiology of ME and suggests a 'three pillars' hypothesis - neurological, immunological and endocrine. They also discuss the lack of effective treatments, lack of a biomarker, and the need for more research.
    Article here Thread here

    ''Pathological Mechanisms underlying ME/CFS'' by Missailidis et al.
    This article outlines the symptoms across multiple body systems and findings of disturbances in multiple biomedical pathways and shifts in metabolism. The authors suggest these point to an underlying molecular pathology reflecting a far-reaching homeostatic shift. A variety of triggers may initiate body-wide pathological cascades with similar outcomes, and stratification may help diagnostic tests to be found.
    Article here Thread here

    Frontiers in Immunology
    Review article: ''Fatigue, Sleep, and Autoimmune and Related Disorders'' by Zielinski, Systrom and Rose.
    Long article, includes CFS in list of conditions that cause profound fatigue.
    From the abstract: ''This review describes how inflammation and the central nervous system contribute to fatigue and suggests potential mechanisms involved in fatigue that are likely exhibited in autoimmune and related diseases.''
    Article here Thread here

    Psychosocial research and review

    Social Science and Medicine

    ''Relationship satisfaction, communication self-efficacy, and CFS-related fatigue'' by Milrad et al.
    Questionnaire based research concludes: ''Results highlight the importance of considering depression and communication-related factors when examining the effects of relationship satisfaction on CFS symptoms such as fatigue.''
    Paper here Thread here

    Journal of Adolescence
    ''Depressive symptoms at age 9–13 and chronic disabling fatigue at age 16: A longitudinal study'' by Collin, Crawley et al.
    Questionnaire study of data from a population longitudinal study did not find an association between depression in young adolescents and later chronic disabling fatigue measured by the Chalder Fatigue Questionnaire once the confounding effect of ongoing depression was removed.
    Article here Thread here

    Journal of Child Health Care
    ''Management of CFS/ME in a pediatric population: A scoping review'' by Collard et al.
    A literature review found 29 papers including nutritional, exercise and psychosocial factors in treating children with CFS/ME. Repeats without caveat conclusions from poor quality studies that exercise and multifaceted treatments including CBT, LP etc. are helpful. Not a recommendation.
    Article here Thread here


    USA - Stanford Symposium 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019.
    It will be live-streamed free.
    Details including signing up here Thread here

    UK - Invest in ME International ME conference week, 27 - 30 May 2020.
    You can sign up to their newsletter.
    IiME information here Thread here


    UK ME Association
    ''Website Survey: Illness Severity and Definitions''.
    Dr Shepherd is interested in feedback on the NICE guidelines current 3 categories of severity, and suggests 4 categories would be better, adding very severe. Comments invited on MEA social media. The monthly survey asks your current severity.
    Article here Survey here Thread here

    S4ME social media: Facebook, Twitter and You Tube
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  3. Trish

    Trish Moderator Staff Member

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    Week beginning 12th August 2019


    Emerge Australia ''Australian ME/CFS biobank awarded to research team which includes Emerge Australia!''
    The Mason Foundation has awarded $1 million to set up an ME/CFS biobank and patient registry, and to use it to research ME.
    The Age and other newspapers have covered this with a good article including patient experiences and information about the biobank plans. See thread for links.
    Article with details of the organisations involved here Thread here

    Trial By Error by David Tuller

    A Stupid Article in The Guardian
    Dr. Tuller comments on the Guardian article from last month where Prof. Sharpe was quoted describing criticism of the PACE trial as abuse. Tuller writes that Sharpe "once again moved the goalposts and is engaged in post-hoc reframing and reinterpretation of the PACE trial".
    Article here Thread here

    Articles, web pages, videos, blogs...

    Norway YouTube video from the Norwegian ME Association where psychologist Ketil Jakobsen and paediatric neurologist Kristian Sommerfelt talk about children and adolescents with ME.
    Thread with video and English summary here

    UK The Sun: "Invisible illness. The 5 signs your constant tiredness is actually chronic fatigue syndrome - as 90% of cases are missed".
    An article about CFS/ME with a list of some of the typical symptoms and statements from Dr. Sarah Jarvis (Patient.info), Dr. Charles Shepherd (The ME Association) and Sonya Chowdhury (Action for ME).
    Article here Thread here

    New Zealand M.E. Awareness NZ has launched its own web site containing information on ME, diagnostic criteria, management strategies, resources and NZ specific support, advocacy and research.
    Web site here Thread here

    Columbia University The Center for Solutions for ME/CFS at Columbia University launches "Ask Our Researchers - Video Q&A Series". First video is Dr. Oliver Fiehn answering how reliable metabolic findings are and describing NIH work on standardising results so they can be compared across different labs.
    Thread with video here

    The ME Association Very Severe ME: It's Time for Something New!
    The first guest blog in a series about very severe ME by nurse and long time carer Greg Crowhurst. He describes the devastating every day life of him and his wife who suffers from very severe ME. He says: "It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!".
    Article here Thread here

    Biomedical research

    The Myhill ATP profiles test.

    Dr Sara Myhill and Dr John McLaren have responded to the article by Tomas et al. which suggested that the ATP profiles test they have developed practice is unreliable. Myhill and McLaren emphasize that the test has “never been presented as a diagnostic test for CFS/ME.” Regarding the technical details, Dr. McLaren says he finds it strange that no significant differences were found between fresh and frozen cells, which is at odds with what he and other scientists have found while exploring the test.
    Their full response can be read here Thread here

    Frontiers in Immunology
    "Antibodies to Human Herpesviruses in ME/CFS Patients" by Blomberg et al.
    The research team of the late Jonas Blomberg reports that immunoglobulin G reactivity to human herpesviruses was similar between ME/CFS patients and controls, suggesting similar exposure to these viruses. Minor relative differences, however, were found in antibody reactivities. The authors speculate that the immune system of some ME/CFS patients may interact differently to these ubiquitous herpesviruses than the immune system of healthy controls.
    Article here Thread here

    Psychosocial research

    Scandinavian Journal of Public Health
    “Prevalence of functional somatic syndromes and bodily distress syndrome in the Danish population: the DanFunD study” by Peterson et al.
    In this study, the research team of Per Fink reports a prevalence for CFS of 8.6%, which is more than 20 times the rate other epidemiological studies have found. Their estimate used scores on the Chalder Fatigue Questionnaire instead of established diagnostic criteria for CFS. According to the authors, their study indicates that functional somatic syndromes and bodily distress syndrome are prevalent in the adult Danish population.
    Article here Thread here

    Coming events

    UK: Action for M.E. 2019 AGM and Conference
    Tuesday Oct. 15th in London. Program includes presentation of their survey with over 4,000 respondents, panel discussion, workshop and Action for M.E. Annual General Meeting.
    Registration here Thread here

    Australia: emerge 2019 Annual General Meeting
    The meeting will be held at Ross House in Melbourne Nov. 21st.
    Announcement and agenda here Thread here


    Hope 4 ME and Fibro Northern Ireland
    are fundraising for a small exploratory research project at Manchester University that will use interviews with people with ME: '' Exploring Trauma & Distressing Experiences Following Medical Encounters''.
    Details here Thread here

    S4ME social media: Facebook, Twitter and You Tube
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