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News in Brief - August 2018

Discussion in 'Weekly ME News in Brief' started by Trish, Aug 5, 2018.

  1. Trish

    Trish Moderator Staff Member

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    ME/CFS News in Brief August 2018

    This thread has a Science for ME News In Brief post for each week in August 2018. Scroll down to find this week's news.
     
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  2. Trish

    Trish Moderator Staff Member

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    Week beginning 30th July 2018

    News

    SNOMED CT
    clinical classification system used in electronic health records has been updated to put CFS and its synonyms including ME in the category 'Disorder of the Nervous System' now that its previous category of 'Multisystem disorder' not longer exists. Good news, given where we might have ended up.
    Thread here post #81

    Canada - There is no funding for ME/CFS research in Canada this year.
    Thread here post #16 ... Another thread here post #125
    ...........................................................

    In the media

    New Zealand -
    The Wireless: ''The children left bed-bound by fatigue'' by Felicity Monk.
    Good article. Quotes Dr Ros Vallings. Also discussed on a radio program - link on thread.
    Article here Thread here post #21

    Huff Post ''Having ME Is Like Being Permanently Encased In A Suit Of Armour'' by Jonathan Davis.
    Uses the metaphor of wearing a painful and heavy but invisible suit of armour to describe the experience of living with ME.
    Article here Thread here

    White House Chronicle ''The Monster Disease Medical Schools Don’t Mention'' by LLewellyn King.
    Calls for medical schools to teach ME/CFS and for more research funding.
    Article here Thread here
    ..............................................................

    USA Centers for Disease Control information on ME


    Trial by Error ''The CDC’s Update for Healthcare Providers'' by David Tuller.
    Examines the good and bad aspects of the new guideline. Includes comments from Mary Dimmock.
    Article here Thread here

    #MEAction ''CDC revises its information on ME'' by @JaimeS.
    Detailed analysis of the whole guideline on ME, not just the recent update - the good, the bad and suggestions for change.
    Article here Thread here
    ....................................................................

    USA - National Institutes of Health (NIH)

    Trans-NIH ME/CFS Working Group
    ME/CFS Advocacy Call - July 19, 2018 telebriefing transcript and audio are now available.
    NIH link here Thread here
    .................................................................

    Articles, blogs...

    Solve ME/CFS Initiative
    Guest Editorial: ''PEM. It's time to Retire the Term'' by ME advocate Pete Hanauer.
    Some definitions of 'malaise' describe psychological conditions. Suggests the alternative term PED, post exertional disability. This has prompted extensive forum discussion.
    Article here Thread here

    Spoonseeker blog ''Probing the Holes in MUS''.
    Examines the background and flawed rationale used to justify the introduction of IAPT (psychological therapies) for people with 'medically unexplained symptoms' in the UK.
    Article here Thread here

    Occupy ME by Jennie Spotila. Two blog posts on NIH funding for ME/CFS research.
    ''NIH 2017 Funding Fact-Check''
    Article here Thread here
    ''How much will NIH spend in 2018?''
    Article here Thread here

    Text book ''Health Psychology'' 5th edition by David F. Marks includes a chapter: ''Long-term Conditions: Diabetes and ME/CFS''. '
    Includes @Tom Kindlon case history and a critical discussion of the PACE trial.
    Thread here
    ....................................................................

    Research

    Nord J Psychiatry ''Association between cytokines and psychiatric symptoms in chronic fatigue syndrome and healthy controls'' by Groven et al.
    Small study finds some cytokines higher in ME. Some correlations found in both healthy and CFS patients. No clear conclusion.
    Paper here Thread here

    Frontiers in Psychology ''Visual aspects of reading performance in Myalgic Encephalomyelitis (ME)'' by R. Wilson et al.
    ME patients showed vision related reading difficulty leading to slower reading.
    Paper here Thread here
    ..........................................................

    Meeting minutes

    UK CMRC
    DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018.
    Minutes here Thread here
    ........................................................................

    Action - Advocacy and fundraising


    Petition: ''#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC''
    A petition addressed to the US HHS department in support of the ICC definition of ME for diagnosis and research in place of the IOM definition.
    This has provoked extensive discussion on the thread.
    Petition here Thread here

    UK Chronic Illness Inclusion Project invites people to take part in a survey of experiences of living with a chronic illness.
    Survey here Thread here

    Severe ME Day is on August 8th.
    Thread here
    Fundraising 'Silence challenge' for the 25% ME group for those with severe and very severe ME.
    Thread here
    ..................................................................
     
    Last edited: Aug 6, 2018
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  3. Trish

    Trish Moderator Staff Member

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    Week beginning 6th August 2018

    In the media

    Severe ME Day 8th August
    In the UK the ME Association has sent out a press release and organised a radio interview. The press release featured Rosie Halsall, a 17 year old with severe ME who has had ME since she was 9 years old, and Skye Wheeler who has severe ME as a result of a parasitic eye infection.
    MEA press release here
    Independent article here
    Mail online Article here Thread here

    BBC Radio 5 live
    3pm 8th August. Interview with Dr Charles Shepherd, a person with severe ME and a phone in.
    Thread here

    CNN ''Millions suffer from an invisible disease: My ME/CFS story'' by Ryan Prior.
    Ryan tells his story of getting sick aged 16, many doctors before diagnosis, and having to take multiple medications that he says keep him functioning well. He explains, on Severe ME Day, that many others are severely ill and bed bound for long periods.
    Article here Thread here

    Huff Post ''It Seems Impossible That People Don't Believe Having ME Is A Serious Illness'' by Skye Wheeler.
    Describes Skye's experience of living with severe ME.
    Article here Thread here

    Netflix From #MEAction: ''Netflix launches ''Afflicted'' - A docuseries about baffling illlnesses''. A series about 7 people including Jamison Hill who has very severe ME.
    Warning - read thread discussion before deciding whether to watch.
    #MEAction article here Thread here
    ..................................................................

    Articles, blogs, videos

    Trial by Error
    by David Tuller
    ''Mayo Still Champions GET''
    Includes feedback from advocate Lisa Alioto who met with a Mayo representative to put the case for change but found ignorance and complete intransigence.
    Article here Thread here

    Medscape "New Clinical Practice Guidelines, August 2018 Edition"
    Helpful brief summary of the recently updated CDC ME/CFS guideline.
    Article here Thread here

    Positive Health Online ''What Can We Expect from the Current Review of NICE Guideline CG53'' by Nancy Blake.
    Looks at some of the history and the process involved in developing guidelines including the limitations. Takes a pessimistic view of the likely outcome.
    Article here Thread here

    Blog Africa Clockwise: ''M.E. Too or Why I am No Longer NOT Speaking to Doctors about Chronic Illness'' by Sam Pearce.
    Excellent article. Tells her ME story, her encounters with doctors, and puts it in the context of the Wessely school's malign influence over medical treatment of ME.
    Article here Thread here

    Voices from the Shadows - Prize-winning animation released for Severe ME day.
    3 minute animation made by student Alexandra Hohner using interviews with a young man with ME. Highlights his light and sound sensitivities and problems with activity management.
    Video here Thread here

    OMF
    ''Meet Laurel Crosby, PhD, member of the SGTC Team''. Short article about Laurel who works on ME/CFS research with Ron Davis's team at Stanford.
    Article here Thread here

    #MEAction July 2018 Research Roundup by @JaimeS.
    Jaime describes the key findings of research into ME/CFS published in July.
    Article here Thread here
    ....................................................................

    News from ME organisations

    Norway The Norwegian ME Association has published a survey on rehabilitation services - 2300 responders.
    Indicates that those who were taught about PEM did better than those pushed to exercise.
    Report here (in Norwegian with English summary p9-12) Thread here

    MESeniors Connect #MEAction share news of a Facebook group for pwME aged over 55 years which already has over 500 global members and invites more to join.
    #MEAction article here Thread here
    ...........................................................

    Biomedical Research

    Oncotarget ''
    Dry eye syndrome and the subsequent risk of CFS — a prospective population-based study in Taiwan'' by Tse-Yen Yang et al.
    Found a higher incidence of CFS in people with DES.
    Paper here Thread here

    Journal of Pharmacology and Experimental Therapeutics

    ''ME/CFS - Metabolic Disease or Disturbed Homeostasis?'' by Theoharides et al.
    A hypothetical model. ''We propose that stimulation of hypothalamic mast cells by environmental, neuroimmune, pathogenic, and stress triggers activates microglia leading to focal inflammation in the brain and disturbed homeostasis.''
    Article here Thread here

    Nature: Clinical and Translational Gastroenterology ''Brain fogginess, gas and bloating: a link between SIBO, probiotics and metabolic acidosis.''
    Not directly about ME but of interest to some. Researchers found what they say is the first known link between probiotic use, bacterial overgrowth in the small intestine, and symptoms of disorienting brain fogginess which cleared with antibiotic treatment and stopping probiotics.
    Paper here ... Science Alert article here ... Thread here
    ....................................................................

    Psychosocial Research

    Health Psychology Open Review article ''Multidisciplinary rehabilitation treatment is not effective for ME/CFS: A review of the FatiGo trial'' by Vink & Vink-Niese.
    Excellent analysis of the multiple flaws in the FatiGo trial and in the conclusions drawn by the trial authors. Concludes that the trial does not show these treatments are beneficial.
    Article here Thread here

    Actas Esp Psiquiatr.''Dimensional Personality Assessment among a CFS sample with Personality Inventory for DSM-5 (PID-5)'' by Calvo et al.
    Suggests some facets of personality can be prognostic of personality disorder in CFS. But does not take into account overlaps in symptoms such as brain fog and lack of energy that will confound questionnaire findings. Not a recommendation.
    Paper here Thread here
    ................................................................

    Action

    WEGO Health Awards
    Several ME advocates have been nominated for these awards. You can endorse (vote for) them until August 18th.
    Wego site here Thread here
    .................................................................
     
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