1. Guest, the 'News In Brief' post for w/c 10th September is available here.
    Dismiss Notice

News in Brief - September 2018

Discussion in 'Weekly ME News in Brief' started by Trish, Sep 9, 2018.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    6,260
    Likes Received:
    38,241
    Location:
    UK
    Science for ME - News in Brief September 2018

    This thread has a post for each week in September 2018. Scroll down to find this week's news.
     
    Joh and Andy like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    6,260
    Likes Received:
    38,241
    Location:
    UK
    Week beginning 3rd September 2018

    News and action alert


    USA - Chronic Fatigue Syndrome Advisory Committee
    The US CFSAC operates under a charter which was up for renewal. The Secretary has decided not to renew the charter and CFSAC sunsetted as of September 5.
    Thread here
    #MEAction
    ''HHS Secretary Kills CFSAC''
    Article here
    #MEAction ''How to protest HHS with #MEAction''
    Article here
    Occupy ME blog by Jennie Spotila: ''Rest In Power, CFSAC''
    Includes quotes from prominent members of the CFSAC.
    Article here
    Solve ME/CFS Initiative is calling on US people to call on their representatives to demand that Congress create a federal ME/CFS Advisory Committee.
    Article here Video here
    ....................................................................

    Other news from around the world

    Norway
    The thread 'News from Scandinavia' includes several recent items on activity in Norway including a petition.
    Thread here from post #290.

    USA #MEAction: ''NIH Update: Collins Will Meet With #MEAction Representatives!''
    #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss demands sent to him in a letter in May. Date to be arranged.
    Article here Thread here

    UK NICE is seeking committee members for the ME/CFS guideline group including GP, physicians, nurse. Closing date 26th September. Some posts, including patient representatives, have already been advertised and interviewed.
    Details here Thread here

    Scotland The Liberal Democrat conference has passed a motion in support of removal of GET/CBT treatments and increasing biomedical research funding for ME/CFS.
    #MEAction article here Thread here
    .............................................................

    In the media

    Holland
    A journalist, Bastiaan Hetebrij, has produced a series of articles about ME published in the online publication De Monitor. It includes support for Professor Michael Sharpe. Not a recommendation.
    Articles here ...Thread here ... Sharpe Thread here
    Criticism of the PACE trial by psychologist Daniƫl Lakens.
    Thread here
    ..............................................................

    Trial by Error by David Tuller
    ''The Cochrane Controversy''
    Cochrane produces respected systematic reviews of medical treatments, but places CFS in the mental disorders group and its reviews of exercise treatments rely on flawed trials including PACE and excludes objective outcome measures. A more recent review has not been published. Tuller explains the history, problems, influence of the reviews, and what should happen next.
    Article here Thread here
    ......................................................................

    Articles and blogs

    ME Advocates Ireland
    ''Complaint Report offers hope for those living with ME in Ireland'' A long and harrowing article by Christine Fenton who has very severe ME about the lack of medical and social care she has experienced for many years, and the outcome of an HSE investigation.
    Article here Thread here

    USA Ithica College ''Tireless Work on Chronic Fatigue Syndrome'' by Kerry Regan.
    IC professor Betsy Keller is among the leaders of Cornell University's participation in and NIH funded 5 year study including pre and post exercise testing.
    Article here Thread here
    .....................................................................

    Research - Diagnostics and definitions

    Frontiers in Pediatrics
    ''Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'' by Staci Stevens et al. (Workwell Foundation).
    ''Conclusions: Basic concepts of CPET are summarized, and special considerations for performing CPET on ME/CFS patients are detailed to ensure a valid outcome. The 2-day CPET methodology is outlined, and the utility of the procedure is discussed for assessment of functional capacity and exertion intolerance in ME/CFS.''
    Article here PDF here Thread here

    Diagostics ''Myalgic Encephalomyelitis (ME) or What? An Operational Definition'' by Frank Twisk.
    Discusses the key features of ME and how they distinguish it from definitions of CFS.
    Article here Thread here
    .......................................................................

    Psychosocial Research


    Journal of Health Psychology ''Confirmatory factor analysis of an ME and CFS stigma scale'' by Termann, Jason et al.
    From the abstract: ''This study adapted a chronic illness stigma scale and explored its psychometric properties. ...Participants endorsed high levels of stigma, estrangement, and disclosure.''
    Paper here Thread here

    BMJ Paediatrics Open ''Using the internet to cope with CFS/ME in adolescence: a qualitative study'' by Brigden, Crawley et al.
    Very small study based on interviews. Young pwME found patient led sites and forums helpful socially and for information.
    Paper here Thread here
    ......................................................................

    Simon Wessely speaks and continues to malign people with ME. He claims a third will recover with a bit of therapy and light exercise. Not a recommendation.
    Royal Society of Medicine (UK)
    Podcast here Thread here
    The Sheffield Star (UK local paper)
    Article here Thread here
    ......................................................................

    Edited to correct the item about Norway.
     
    Last edited: Sep 9, 2018
  3. Trish

    Trish Moderator Staff Member

    Messages:
    6,260
    Likes Received:
    38,241
    Location:
    UK
    Week beginning 10th September 2018

    News

    USA NIH
    National Advisory Neurological Disorders and Stroke (NANDS) invited ME/CFS community participation in a meeting on September 13th.
    SMCI article here Thread here

    USA CDC funding for ME/CFS to continue in 2019.
    SMCI article here Thread here

    USA
    on September 14th #MEAction organised a virtual protest against the closure of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).
    #MEAction article here Thread here

    Norway The Kavli Trust is continuing its long cooperation with the research group for ME/CFS at Haukeland University Hospital (Fluge and Mella's team), supporting further biomedical research with NOK 4.72 million in 2018 and 2019 (around $590,000).
    Thread here post #311
    ...............................................................

    In the media


    Huff Post ''Netflix's 'Afflicted' And The Constant Misunderstanding Around Chronic Illness'' by Jenna Birch.
    Long article describes her own experience with Fibromyalgia and several others with chronic ill understood or misdiagnosed illnesses and a statement from the executive producer of Afflicted.
    Article here Thread here post #277

    The Californian ''Californian editor publishes book - Vidhima Shetty sheds light on the little-known disease of Chronic Fatigue Syndrome''.
    Sympathetic article. The book, 'An Adolescents' Guide to ME/CFS' started when she wrote article about her neighbour who has severe ME/CFS. Proceeds of sale to OMF.
    Article here Thread here

    The Conversation ''Fibromyalgia: researchers trying to fathom the causes of this painful condition'' by Prof. Kevin Davies et al.
    Includes a brief description of their current research into FM and CFS using tilt table testing and MRI brain scans.
    Article here Thread here
    ..............................................................

    Articles, webinar, talk

    USA
    Dr. Bruce Levin spoke at Columbia University: "How NOT To Conduct A Randomized Clinical Trial" about the PACE trial.
    Article here ... PDF of the lecture here ... Thread here

    SMCI webinar ''Appropriately and Accurately Assessing Symptoms in Patients with ME'' by Leonard Jason held on 13th September is now available on YouTube.
    Webinar here Thread here

    Medical Republic
    (Australia) ''Guidelines for ME/CFS outdated and dangerous'' by medical writer Felicity Nelson.
    Article here Thread here

    IiMER article in support of the petition against BPS treatments in Norway.
    Article here ... Petition here ... Thread here
    ............................................................

    And the misinformation continues

    Oxford University
    Neuroscience stoops to a new low with a short article about CFS/ME treatment full of misinformation including a claim that 73% improve significantly with CBT, and with no mention of PACE.
    Article here Thread here

    Bristol University Bristol Randomised Trials Collaboration - boasts of its high quality trials that bring in lots of money for the University, including FITNET and MAGENTA.
    Article here Thread here
    ..................................................................

    Biomedical Research

    Int. J. Mol. Sci. Review Article ''Unraveling the Molecular Determinants of Manual Therapy: An Approach to Integrative Therapeutics for the Treatment of Fibromyalgia and CFS/ME'' by Espejo et al.
    Article here Thread here

    PLOS ONE
    ''CFS patients have alterations in their oral microbiome composition and function'' by Taiwu Wang et al.
    Paper here Thread here
    ..................................................................

    Conferences this week

    Northern Ireland Hope 4 ME & Fibro conference, 17th September.
    Thread here

    UK CMRC Conference 19th & 20th September in Bristol.
    Thread here
    ...........................................................

    Coming events

    UK
    Royal College of GP's conference 4-6 October. Forward ME charities will have a stand at the conference and will run a workshop led by doctors Shepherd, Purdie and Speight. They have also written an article for the GP's magazine.
    Thread here
    .........................................................
     
    Hutan, diwa, Indigophoton and 7 others like this.

Share This Page