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News in Brief - March 2018

Discussion in 'Weekly ME News in Brief' started by Trish, Mar 4, 2018.

  1. Trish

    Trish Moderator Staff Member

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    This thread contains a news post for each week in March 2018
    ....................................................................

    Week beginning 26th February 2018

    News from around the world


    UK Radio 5 Live program on ME featuring @Gary Burgess, journalist with ME, also Dr Julia Newton and Jen Brea. Wednesday 28th February, 1pm onwards.
    Thread here

    UK MEAction Analysis of minister’s response in Westminster Hall PACE debate.
    MEAction article here Thread here

    UK PACE trial Correspondence from the DWP for 2003 released.
    Thread here

    UK Forward ME Group minutes from meeting 7th February 2018.
    Minutes here Thread here

    UK - i News Opinion piece: "Cannabis law reforms would let chronically ill people like me live in less pain and more dignity" by ME patient Jason Reed.
    Article here Thread here

    Scandinavia Positive and negative news and media stories are posted and discussed on the thread 'News from Scandinavia'.
    Thread here

    Norway
    The Research Council of Norway: User involvement gave users real influence.
    Thread here
    The Norwegian Directorate of Health receives letter signed 308 parents - complaints about centre that uses BPS approach and harms children.
    Thread here

    Holland - ME/CVS Vereniging: shocking story about the (mal)treatment of an ME/CFS-patient. Translation into English from Dutch ME organisation, posted on Facebook.
    Thread here

    Canada
    - CBC article: 'Fibromyalgia/CFS patients fighting for awareness of career-ending illness.'
    Article here Thread here
    ...............................................................

    Research related news

    Trial by error:
    'Our Exchange of Views with BMJ Open'. Tuller, Racaniello and others respond to BMJ Open's unsatisfactory reply to their letter about Crawley trial.
    Article and letter here Thread here

    Data sharing
    - The Journal of Health Psychology has announced a 1 year trial of a data sharing policy for trial it publishes that include quantitative data. De-identified data to be made available indefinitely to anyone for any purpose.
    Policy statement here Thread here

    NIH Version 1.0 of NINDS ME/CFS Common Data Elements now available
    Thread here

    USA SMCI National ME/CFS patient registry preparing to launch soon.
    Article here Thread here
    ...........................................................

    Action

    Canada, Ontario
    Millions Missing Canada 'Call to Action' for Ontario Residents re Task Force Recommendations for ME, FM & ES/MCS! Contact your MPP.
    Thread here
    .........................................................

    Biomedical Research

    Journal of Translational Medicine

    'Association of CFS with premature telomere attrition' (2018) Unger et al
    Finds evidence that people with CFS age faster.
    Paper here Thread here

    Frontiers in Endocrinology
    'Higher prevalence of ‘low T3 syndrome’ in patients with CFS: A case-control study' (2018) Ruiz-Núñez et al.
    Paper here Thread here

    SMCI Ramsay research update on Jarred Younger 'brain temperature' study.
    Article here Thread here
    .......................................................

    Biomedical studies recruiting participants

    USA
    Stanford, California. Evaluating hormones in women with ME/CFS.
    Thread here
    USA Stanford, California. Brain MRI and Immune Profiling CFS.
    Thread here
    UK Oxford, A study looking into energy status & MRS scans in CFS. Looking at lactate in the brain.
    Thread here
    .....................................................................
    PDF version here
     
    Last edited: Apr 22, 2018
  2. Trish

    Trish Moderator Staff Member

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    Week beginning 5th March 2018

    News from around the world


    USA Dr Zaher Nahle is to lead the Arthritis National Research Foundation.
    Announcement here Thread here

    David Tuller - Trial By Error: News About My Plans. David will be crowdfunding another year to continue his work. Donations open for the month of April.
    Article here Thread here

    Australia David Tuller's tour dates announced, beginning 16th March in Melbourne.
    Thread here

    Australia Emerge Australia submission to the Joint Standing Committee on the National Disability Insurance Scheme.
    Thread here

    UK CMRC agree on a new Charter, March 2018. Crawley leaves the board, Chris Ponting joins. Focus on biomedical research. David Tuller comments.
    Article here MEA article here Thread here
    Tuller article here Thread here
    ........................................................................

    Articles and a book

    American Society for Biochemistry and Molecular Biology feature article on ME: 'Myalgic Encephalomyeltis: Unknown cause. No cure. New hope.'
    By Lily Williams. Long excellent article includes history and current research.
    Article here Thread here

    Trial By Error: My Exchange With Archives of Disease in Childhood by David Tuller. Letter to the journal that published the SMILE trial. No useful response yet.
    Article here Thread here

    France Article in Le Figaro by an ME sufferer about his experience of living with ME in France.
    Thread here

    Article: ''The PACE trial – “one of the biggest medical scandals of the 21st century” by James Millar Craig. Lawyer's article about PACE parliamentary debate.
    Article here Thread here

    Book: ''Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick'' by Maya Dusenbery
    Thread here Thread linking article here
    ..............................................................

    Articles about research and researchers

    Clinical Science: Review article: Does the microbiome and virome contribute to ME/CFS?, 2018, Newberry et al
    Article here Thread here

    Jackson Labs interview with Dr Julia Oh, microbiologist, leading their ME/CFS microbiome project.
    Article here Thread here

    'Seeking An Elusive Cure' - article on Maureen Hanson and her Collaborative Research Center.
    Article here Thread here
    ...............................................................

    Action


    USA: Members of Congress are coming together in a single voice to stand for ME/CFS. Will your Representative join them? Send a message to your member of Congress. Deadline March 14th.
    Thread here

    Scotland: “Lived experience of neurological conditions” Survey organised by Our Voice, The Alliance Neurological Programme and Neurological Alliance of Scotland. Conditions listed include ME.
    Survey here Thread here

    MEA monthly poll: Effective forms of pain management
    MEA here Thread here
    .........................................................

    In Memory of Bob

    We mourn the loss of @Bob, ME sufferer, activist and much loved friend.
    Members only threads here and here.
    .........................................................

    PDF version here
     
    Last edited: Mar 14, 2018
  3. Trish

    Trish Moderator Staff Member

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    Week beginning 12th March 2018

    News

    David Tuller - ''Trial By Error: The Dutch Review; My Trip; Bristol's Silence''
    Article here Thread here

    David Tuller - ''Trial By Error: The Australian Situation, and Professor Crawley’s New Position''. Excellent Q&A with Penelope McMillan on the Australian situation - still dominated by PACE, CBT/GET.
    Article here Thread here
    ................................................................

    In the media

    Australia
    Melbourne radio interview with Jen Brea, activist and ME sufferer Anna Kerr, Emerge CEO Dr Heidi Nicholls and Bio21 Institute researcher Chris Armstrong.
    Link here Thread here

    UK Daily Mirror: "Heartbroken mum suffering a 'living death' that means she can only see her son a few minutes a day". Includes good 3 minute video in which Dr Julia Newton describes ME and her research.
    Article here Thread here
    ...............................................................

    Blog articles

    Simon McGrath: ''The CMRC's new biomedical focus and big ambitions''
    Article here Thread here

    The Hippocratic Post ''
    An integrative approach to ME'' by Dr Rajendra Sharma
    Not a recommendation.
    Article here Thread here

    Jackson Labs Interview with Dr Lucinda Bateman
    Article here Thread here
    .............................................................

    Clinicians Summit report

    USA Bateman Horne Center. Dr. Bateman's Video Summary of Clinicians' Summit March 2-3, 2018
    Video here Thread here

    Medscape Articles resulting from this summit by Miriam Tucker:

    ''Much Can Be Done to Ease 'Chronic Fatigue Syndrome' Symptoms''. Excellent article outlining points discussed at the meeting including treatments and unanimous rejection of PACE GET/CBT.
    Article here Thread here

    ''Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome''. Doctors at the summit say a subset of patients may have treatable MCAS as an underlying factor contributing to their ME/CFS.
    Article here Thread here

    ''Low-dose Naltrexone Explored as Option for Chronic Pain''
    Article here Thread here
    ..........................................................

    Conference report

    UK
    BACME conference report. BACME is the organisation of therapists treating people with ME/CFS.
    MEA report here Thread here
    .......................................................

    Biomedical Research

    PLOS ONE 'Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME' (2018) Scheibenbogen et al
    Small pilot trial shows treatment may be effective in a subset of patients.
    Paper here Thread here

    OMF research update Includes mention of new 'metabolic trap' hypothesis being tested, and Severe ME big data study showing some genetics of interest.
    Article here Thread here
    ...................................................................

    Other Research

    PharmacoEconomics Open ''Functional Status and Well-Being in People with ME/CFS Compared with People with MS and Healthy Controls'' (2018) Kingdon and al., Uses UK ME/CFS biobank data.
    MEA press release ''People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis''
    Paper here Thread here
    MEA Press Release here Thread here

    Nature ''Open-Label Placebo Treatment for Cancer-Related Fatigue: A Randomized-Controlled Clinical Trial'', 2018, Hoenemeyer et al
    Not a recommendation, but useful discussion on thread.
    Paper here Thread here

    Journal of Psychosomatic Medicine ''A step towards a new delimitation of functional somatic syndromes: A latent class analysis of symptoms in a population-based cohort study'', 2018 by Eliasen et al. Not a recommendation.
    Paper here Thread here

    Medical Hypotheses -
    ''Perceived fatigue and energy are independent unipolar states: Supporting evidence'', by Loy et al. Suggests energy and fatigue are controlled by different brain chemicals, and should be measured separately.
    Article here Thread here

    Nature Correspondence
    ''CFS therapies grounded in science hold promise'' by Robert Saunders. Excellent short letter in response to Sharpe and Chalder, challenging the PACE authors' claims.
    Letter here Thread here
    ............................................................

    Action

    USA
    SMCI says Register now for ME/CFS Advocacy Day on Capitol Hill on May 15th.
    SMCI page here Thread here

    USA The NIH study needs more patients to take part.
    Thread here

    UK Independent commission on future of NHS call for submissions. Individuals or groups invited to submit. Can we provide evidence for removal of CBT/GET clinics and IAPT/MUS?
    Thread here
    ..........................................................

    Coming Events

    #Millions Missing 12th May
    UK Southampton Thread here London Thread here

    NICE
    Guideline scoping workshop, Fri 25th May 2018
    Thread here Scope for current guideline Thread here
    .............................................................

    PDF version here
     
    Last edited: Mar 21, 2018
  4. Trish

    Trish Moderator Staff Member

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    Week beginning 19th March

    Headline news - Major PACE trial reanalysis paper published

    BMC Psychology: ''Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT'' by @Carolyn Wilshire, @Tom Kindlon, Robert Courney, Alem Matthees, David Tuller, Keith Geraghty and Bruce Levin.
    Paper here Thread here

    ME/CFS Research Review
    ''PACE trial’s findings fundamentally challenged by a new study'' by Simon McGrath. Easy to read summary and discussion of the paper.
    Article here Thread here

    Science Media Centre ''CFS/ME factsheet for journalists: The illness and the controversy''. The usual SMC spin supporting PACE.
    Factsheet here Thread here
    ''Reanalysis of the PACE trial''
    Article here

    ''Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments''. Includes good comment from @Chris Ponting.
    Article here
    MEA ''Reanalysis of the PACE trial finds impressive claims for recovery following CBT and GET are ‘not statistically reliable’.''
    Article here
    Action for ME ''PACE update: Latest analysis and comment''
    Statement here
    BBC ''Chronic fatigue trial results 'not robust', new study says''
    Article here Thread here
    The Times ''Findings of £5million ME chronic fatigue study 'worthless'.''
    Article here
    The Times Letter from Forward ME: 'Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists’.'
    Letter on MEA website Thread here
    Daily Mail ''Findings of chronic fatigue study 'not reliable'.''
    Article here
    Boots WebMD ''CBT for ME/CFS study questioned''
    Article here
    The Canary ''The mainstream medical community just declared war on people living with ME''
    Article here Thread here
    ...............................................................

    More Headline News

    Dutch Health Council publish their long awaited advice/guidelines on ME/CFS.
    A definite improvement - GET downgraded.
    Thread here Another thread here

    Australia - David Tuller ''Trial By Error: Checking in from Melbourne and Canberra…'' Includes links to interviews and panel discussion.
    Article here Thread here
    More David Tuller Australia tour events announced.
    Thread here
    ..........................................................

    In the media

    ScienceAlert Article ''One of The Biggest Myths About Chronic Fatigue Syndrome Has Been Debunked'' by Fiona Macdonald. Republished Australian article about PACE debunked and current biomedical research - focus on Prof. Staines' research at Griffith University.
    Article here Thread here

    India Abroad: "Mysterious Chronic Fatigue Syndrome shuts down young adults’ lives"
    Article here Thread here
    ...........................................................

    Biomedical Research

    Frontiers in Endocrinology
    ''Higher Prevalence of “Low T3 Syndrome” in Patients With CFS: A Case–Control Study'' by Ruiz-Núñez et al.
    Paper here MEA article here Thread here

    NeuroRehabilitation''Balance deficits in Chronic Fatigue Syndrome with and without Fibromyalgia'' (2018) Natelson et al.
    Small study suggests greater vestibular balance problems in CFS + FM than CFS alone.
    Paper here Thread here

    Fatigue: Biomedicine, Health and Behaviour ''Task related cerebral blood flow changes of patients with chronic fatigue syndrome: an arterial spin labeling study'' by Staud et al.
    Small study shows some differences in CBF associated with fatigue in CFS.
    Paper here Thread here

    BMJ Gut ''Markers of non-coeliac wheat sensitivity in patients with ME/CFS'', Alaedini et al.
    Suggests wheat sensitivity in subset of ME/CFS patients.
    Letter here Thread here

    OMF News of a new project studying red blood cell deformability in ME/CFS.
    Article here Thread here
    ..............................................................

    Psychosocial Research

    The Lancet GETSET
    Six excellent critical letters to the Editor published, with response from GETSET authors.
    Thread here

    Frontiers in Psychology ''Negative Affectivity, Depression, and Resting Heart Rate Variability (HRV) as Possible Moderators of Endogenous Pain Modulation in Functional Somatic Syndromes'' by Van den Bergh et al.
    Experiment on CFS and FM patients. Nothing useful found.
    Paper here Thread here
    .......................................................

    Useful resources

    Science for ME PACE Briefing document ''The PACE Trial Controversy: A Summary''. Excellent summary of the trial, its flaws and faulty analysis, the reasons its failure was not acknowledged and what is needed now, with references.
    Document PDF here Thread here
    ........................................................

    Threads of interest:

    New blog launched: ME/CFS Research Review by Simon McGrath (@Simon M).
    blog here Thread here

    PACE Trial Steering group (TSG) and Management group (TMG) minutes have been released.
    Thread here

    USA: NIH spending on ME/CFS in 2017 blog post by Jennie Spotila analyses detailed breakdown of funding and projects funded.
    Blog here Thread here
    ..............................................................

    Action

    UK Preparation for planned Parliamentary debate on ME. More information on contacting your MP from ME Action.
    Thread here

    USA Solicitation for Applications from Individuals Interested in Being Appointed to the Chronic Fatigue Syndrome Advisory Committee
    Document here Thread here

    USA SMCI ME/CFS Advocacy Day on Capitol Hill needs donations and people to sign up to attend on May 15th.
    Thread here

    Canada Millions Missing event preparation for May.
    Thread here
    .................................................................

    PDF version here
     
    Last edited: Mar 27, 2018
    dangermouse, JohnM, Inara and 18 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Week beginning 26th March 2018

    News


    David Tuller's crowdfunding launched For the month of April, donations are invited to contribute to the $75,000 target to employ David half time for another year.
    Donate here Thread here

    Australia David Tuller reports on his visit to Canberra.
    Article here Thread here

    NIH ME/CFS Advocacy Call - March 2018. Audio recording and transcript now available.
    NIH link here Thread here

    UK ''Trial By Error: A Q-and-A with Scottish MP Carol Monaghan'' by David Tuller
    Article here Thread here

    Europe EUROMENE (European Network on ME/CFS) is setting up a research network. Ireland's representative is researching the economic impact of ME/CFS.
    Article here Thread here
    .........................................................

    Biomedical Research

    Journal of Extracellular Vesicles ''Circulating extracellular vesicles as potential biomarkers in CFS/ME'' by Jesús Castro-Marrero et al. Tiny study showed larger numbers and smaller size of EV's in blood of CFS/ME patients compared with healthy controls.
    Paper here Thread here

    Journal of Cardiology ''The aetiologic relation between disequilibrium and orthostatic intolerance in patients with ME/CFS'' by Kunihisa Miwa et al.
    Study suggests disequilibrium is more common than POTS as a cause of OI in ME/CFS.
    Paper here Thread here

    Researcher Interviews

    Jackson Labs blog: "Scientist Spotlight: Peter Robinson, M.D., M.S." Interview with expert in bioinformatics and genetics who will be helping analyse the ME/CFS data.
    Interview here Thread here

    ME/CFS Alert - Video interview with Michael VanElzakker, brain scan researcher now studying ME/CFS - talks about his findings so far and future plans.
    Interview here Thread here
    ................................................................

    Psychosocial Research

    Pediatric Health, Medicine and Therapeutics ''
    Pediatric chronic fatigue syndrome: current perspectives'' by Esther Crawley.
    Includeds treatment advice based on CBT/GET/activity management and regulating sleep. Serious cause for concern - misinforming paediatricians.
    Article here Thread here

    Trial by Error ''
    Yet Another Go-Round with BMJ Open''. Tuller & Racaniello writing again to Trish Groves/BMJ spelling out clearly why Crawley's school absence study was not a service evaluation and did not have ethics approval.
    Article here Thread here

    MEA response to GETSET.
    The MEA has gathered together the letters to the Lancet and response published last week with the MEA Review of the trial.
    Article here Thread here
    ......................................................................

    Publications and blogs

    The ME Global Chronicle - March 2018
    Online 123 page magazine written by and for PWME gathering articles from many sources.
    Chronicle here Thread here

    Holland - Two excellent blogs relating to the recent Dutch ME/CFS guideline changes.
    "Dutch Health Council - Paradigm Shift - The denouement - My answer to prof. Knoop'' by Anil van der Zee (@Grigor)
    Blog here Thread here
    ''Desperate Scientists'' by @Lou Corsius
    Blog here Thread here
    ......................................................................

    Action

    #MillionsMissing
    May 12th 2018
    ME Action has information on how to get involved.
    ME Action link here Thread here

    David Tuller - donations invited - see above.

    UK How to involve your MP in Carol Monaghan's PACE campaign.
    Thread here
    .....................................................................

    Future events

    Australia
    CFS/ME International Conference 26-27th November 2018 organised by Griffith University, Queensland.
    Speakers from USA, Germany, Japan, Australia.
    Details here Thread here
    .......................................................................
     
    dangermouse, Hutan, Sasha and 11 others like this.
  6. Trish

    Trish Moderator Staff Member

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