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News in brief - July 2019

Discussion in 'Weekly ME News in Brief' started by Kalliope, Jul 7, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
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    Week beginning 1st July 2019

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    Trial By Error by David Tuller

    FOI Response from Bristol about LP Study, Correction in BJGP about MUS
    Bristol university has responsed to Dr Tuller's FOI request. The University was informed the BMJ had raised serious questions about the LP study, but was not given a copy of the investigators' response to the journal's inquiries, and decided not to conduct its own investigation into the problems with the SMILE LP trial.

    Dr Tuller has replied to the FOI office with a follow up request for a copy of the trial investigators response to the BMJ's questions about the trial which the University authorities have not seen, but must be held by the trial investigators.

    Dr Tuller also reports that the British Journal of General Practice has now published a correction of the misquoted inflated NHS costs for MUS.
    Article here Thread here

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    Articles, videos, blogs...

    USA ''CDC Systematic Evidence Review of Treatments for ME/CFS'' by Mary Dimmock.
    The CDC is conducting this systematic evidence review as the first step in longer-term plans to develop treatment guidelines for ME/CFS. This two page article describes some of the steps taken so far, the likely timescale and the uncertainties, such as which research definitions (eg Oxford) will be included. Prospective registration of the review description will be published.
    Thread with link to article here

    Cochrane A publicly released email correspondence gives insights to the controversy surrounding the infamous Cochrane review on graded exercise therapy. In a blog post, Michiel Tack explains that these emails show that the authors of the review made repeated mistakes and that this was confirmed by the independent experts Cochrane consulted. The email exchange raises questions about the Reuters article published in October 2018, which suggested Cochrane was conceding to unfounded but fierce criticism from the CFS community.
    Thread with link to article here

    BMJ Medical Humanities
    Susanna Agardy wrote a critique of the article 'Mind, Medicine and Morals: A Tale of Two Illnesses' by Sharpe and Greco. Agardy argues that the authors misrepresent ME/CFS patients’ motivation in rejecting rehabilitative treatments: “It is not a matter of philosophy for patients. Nor do they wish to become the recalcitrant activists the authors portray them to be. The motive is simple self-preservation. Patients have no choice but to try and avoid what harms them.”
    ''Why GET and CBT are Controversial in CFS'' by Michiel Tack. A separate blog that provides a clear and succinct explanation of four key reasons why ME/CFS patients object to these treatments.
    Critique here Blog here Thread here

    OMF Symposium Recordings of individual presentations from the OMF-funded Inaugural Harvard ME/CFS Collaboration Symposium "Finding Clarity" Community Day are now available. Speakers include Drs Ron Davis, Wenzhong Xiao, Michael Van Elzakker and Maureen Hanson, and a panel discussion.
    You Tube link here Thread here

    JAMA "Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome"
    Anthony L. Komaroff offers the readers of JAMA (The Journal of the American Medical Association) an overview of some of the progression that's been made in research into ME during the last 35 years.
    Article here Thread here
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    Research funding

    UK
    @Andy has collated all the ME/CFS and related research currently being funded by UK sources, both charities and public funders. The list includes research in other countries funded by UK charities, and projects completed but not yet published. Almost all the biomedical research is funded by the charities AfME, MEA, MERUK and IiMER. He also details Dr. Karl Morton's rejected application for MRC funding, and the plans by Dr Chris Ponting and others to apply for funding for a large genome study.
    Thread with details and links here
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    Literature search

    Journal of Translational Medicine
    "The clinical value of cytokines in chronic fatigue syndrome" by Tiansong Yang et al
    A literature search on studies involving CFS and cytokine. The authors believe that a better understanding of cytokine-related mechanisms will confirm associations between CFS and other neuroimmune disorders and bring us closer to treatments, but that for now the evidence is not sufficient for interventions with cytokine modulation.
    Paper here Thread here
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    Biomedical research

    Diagnostics

    ''Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases'' by McGregor et al.
    An exploratory study of blood and urine metabolites in 47 ME/CFS patients during PEM and not, and matched controls, found differences related to energy metabolism and gut permeability. Useful for generating hypotheses for further research.
    From the discussion: ''The findings that the PEM is associated with a loss of metabolites, reduction in acetylation, deregulation of purine metabolism, increased contractile protein breakdown and bacteremia associated with exercise suggest that treatments such as graded exercise may be more detrimental than beneficial...''
    Paper here Thread here

    Biological and Pharmaceutical Bulletin

    ''ME/CFS Induced by Repeated Forced Swimming in Mice'' by Hara et al.
    Forced exercise in mice led to increased fatigue behaviour, decreased activity and reduced pyruvate dehydrogenase, all of which could be partially reversed by the drug DCA (dichloroacetate). The authors draw parallels between these effects and ME/CFS in humans.
    Paper here Thread here
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    Other research

    Frontiers in Pediatrics
    ''Medically Documenting Disability in ME/CFS Cases'' by Comerford and Podell.
    A USA disability insurance legal expert and a clinical professor spell out clearly the process of documenting a medical insurance disability claim in cases of severe ME/CFS including keeping daily records. ''No claim can succeed without medical support and documentation of symptoms and functional limitations (physical and cognitive) by informed ME/CFS medical providers.''
    Article here Thread here
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    Patient Surveys

    Denmark
    The Danish ME Association has an online survey for Danish ME patients on illness progression. It consists of 14 questions, takes about 5 minutes to answer and is anonymous.
    Survey here Thread here

    UK MEA Website Survey: 'Physiotherapy and ME'.
    A new group, Physios for ME has been formed in the UK. They are working with the MEA to improve physiotherapy education about ME, and would like feedback on patient experiences. This month's survey asks about good and bad experiences and they are also inviting details by e-mail.
    Survey and contact information here Thread here
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    Votes invited

    Wego Health awards ME advocates & groups you can endorse (=vote for) include Tom Kindlon, Joan McParland, Michiel Tack and Jessica Taylor-Bearman.
    Thread with links here

    The People's Book Prize Jessica Taylor-Bearman's book 'A Girl Behind Dark Glasses has been nominated and anyone can vote.
    Vote here Thread here
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    S4ME social media: Facebook, Twitter and You Tube
     
  2. Trish

    Trish Moderator Staff Member

    Messages:
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    Location:
    UK
    Week beginning 8th July 2019

    News


    Australia National Health & Medical Research Council’s ME/CFS Advisory Committee’s final report released. There were more than 250 submissions received on the draft report during the public consultation process, thanks to help from ME Advocacy Network Australia and Emerge Australia. Two recommendations have already been implemented - a health economics study and a $3 million grant.
    Report here Thread here

    PACE trial data
    In 2017, the Journal PLOS ONE issued an expression of concern because the PACE-trial authors refused to share data as is required by journal policy. The PACE authors referred to the Research Ethics Committee (REC)’s advice that “that public release, even of anonymised data, is not appropriate”. Now the UK Health Research Authority Chief Executive, Teresa Allen, has upheld an appeal by John Peters. The REC has reconsidered its initial advice and now supports the disclosure of the data.
    Thread with HRA letter here
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    Trial By Error by David Tuller

    Some Thoughts on MUS and Bermingham; My Letter to Professor Payne
    Dr Tuller takes a closer look at the 2010 paper by Bermingham et al. about MUS, often misquoted by others as costing the NHS around 10% instead of around 3% of its budget. ''In Bermingham et al, distinctions between the concepts of MUS and “somatisation” have essentially been erased.'' This mis-attribution and the cost misquotes feed into the justifications of the IAPT psychological therapy program for MUS, including ME/CFS.
    Dr Tuller has written to Prof Payne to point out her error that greatly overstates the costs and ask for it to be corrected.
    Article with letter here Thread here

    Mary Dimmock on CDC’s New Evidence Review
    Dr Tuller reposts Mary Dimmock's article about the review first published in the ME Chronicle last month. (see last week's news)
    Article here Thread here
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    In the media

    UK Teach Secondary ''Don't ignore the empty chair'' by Clair Tripp.
    “When long term illness stops a student coming to school regularly, we should be supporting access not chasing attendance”
    Excellent article explaining ME and the need for schools to provide appropriate support for students with ME.
    Thread with link to article here

    New Zealand Herald video ''Julie Marshall speaks to The New Zealand Herald about the condition she suffers from''. A 3 minute video describing the way people with ME disappear from life, are sick, not just tired, and have been wrongly put in a psychiatric dustbin, finishing with a plea for research funding and for pwME to be believed.
    Video here Thread here
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    Articles, videos, blogs, minutes ...

    UK CMRC
    Minutes of the CMRC board meeting of 26th June are available, including brief updates on the MRC Strategy Board, CMRC Working Groups, and Conference planned for 10/11 March 2020.
    Minutes here Thread here

    Norway In an open letter to the Minister of Health and Care Services, Nina E. Steinkopf points to a recent report from the Norwegian ME Association about the grave situation for severe ME patients as a critical evaluation of the work by the National Competence Center for CFS/ME (and their biopsychosocial approach)
    Link to letter and google translation here

    Jackson Laboratory ''JAX ME/CFS CRC Scientific Progress – 2019''
    ''...a major goal of our ME/CFS Center at JAX is to deeply characterize patient clinical phenotypes together with immunologic, metabolic, and microbiome markers in the blood and gut.'' This article describes progress in their 5 year study, with most of the 150 patients and 100 controls already recruited by the Bateman Horne Center doctors, and blood and fecal samples collected.
    Article here Thread here

    JAMA "Biomarker Test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
    Short article under the headline Biotech Innovations about the recent study from Ron Davis and his team on their nano needle as a possible biomarker for ME.
    Article here Thread here

    Canada "Building Bridges and Laying Foundations - Meeting with Our Minister of Health About ME"
    Scott Simpson has written a report from a recent meeting between ME patients and Minister of Health Petitpas Taylor. The report includes topics discussed and suggestions for moving forward in order to improve the situation for ME patients in Canada.
    Thread with report here

    ME Association article ''Facing up to Mental Health Challenges'' by Russell Fleming.
    In this powerful article, Russell Fleming describes his diagnosis of ME twenty years ago, the gradual process of having to give up his career, and the impact this had on his mental health. He shares some of his experiences, good and bad, of getting professional help with his mental health problems and coming to terms with long term disability.
    Article here Thread here
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    Patient survey

    UK - National Neurology Patient Experience Survey
    The Neurological Alliance did a survey of more than 10,000 patients with a neurological condition in England of which 319 had a diagnosis of ME/CFS. Of the more than 47 neurological conditions included, ME/CFS was ranked as having the most severe impact on quality of life and the ability to carry out activities. ME/CFS patients indicated that their social and mental health needs were not met by the care available. Some felt that the psychological ‘help’ they had received was entirely misjudged and harmful.
    Survey report here Thread here
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    Research overviews

    ME Association

    ''MEA Summary Review: The role of Mitochondria in ME/CFS'' by Charlotte Stephens.
    A 23 page pdf document that gives a clear overview, starting with an easy to read summary of the functions of the mitochondria, and the different types of cellular energy production. The overview of current research findings, concludes that there is a problem upstream of the mitochondria that affects function, and more research is needed to investigate the various theories about what is causing this.
    MEA link here PDF link here Thread here

    Diagnostics

    ''Current Research Provides Insight into the Biological Basis and Diagnostic Potential for ME/CFS'' by Sweetman et al.
    New Zealand team provides an overview of the diagnostic criteria and current research into ME/CFS, including their own contribution to the search for biomarkers. Part of a special issue of the journal linked to the recent Australian conference.
    Article here Thread here
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    Psychosocial Research News

    BMJ Archives of Diseases in Childhood
    ''Editor’s note on correction to Crawley et al. (2018)'', 2019 by Nick Brown.
    and
    ''Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial'' by Crawley et al. Edited version 2019.
    News about the SMILE-trial, the controversial study on the lightning process in children with ME/CFS. Following correspondence from Dr Tuller about the merging of a pilot study into the main trial with outcome switching, the authors have been allowed to add sections to the paper justifying their changes, without changing their conclusions. The Editor’s note explains why the journal preferred a correction instead of retraction of the paper.
    Editors' note here Amended paper here Thread here
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    Research

    Pain Practice
    ''MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome'' Al-Rawaf et al.
    Al-Rawaf et al. report that adolescents with persisting and debilitating fatigue experience more pain than comparable healthy controls. Expression of micro RNA's was down-regulated in the fatigued patients, interfered with pain intensity and frequency and was associated with higher expression of immune inflammatory-related genes.
    Paper here Thread here
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    Last edited: Jul 14, 2019 at 10:57 AM

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