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News in Brief - October 2018

Discussion in 'Weekly ME News in Brief' started by Trish, Oct 7, 2018.

  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 October 2018 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 1st October 2018

    News

    UK
    The October 01 release of the SNOMED CT UK Edition is now available from the NHS Digital public version of the SNOMED CT browser.
    This UK release incorporates the addition of the parent "Disorder of nervous system" for CFS and terms under Synonyms, as approved and implemented for the July 2018 release of SNOMED CT International Edition.
    Thread here post #162

    Norway A petition against the National Competence Service for CFS/ME (BPS approach) has now reached over 4 500 signatures. Initiator Nina E. Steinkopf has written several blogposts explaining problematic aspects with the Competence Service. Last week she wrote about their research efforts.
    Blog post here (Google translated) Thread post here.
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    In the media

    CNN
    ''Indie pop sensation's disease became his muse''.
    Ryan Prior has written about Belle & Sebastian musician Stuart Murdoch for CNN Health. Stuart Murdoch has had ME since the late 1980's. He has recently become an ambassador for Open Medicine Foundation and says that to shine a light on a disease that afflicts more than 17 million people worldwide could be the most important thing he ever does.
    Article here Thread here

    GQ Magazine
    ''Chronic fatigue syndrome: everything you need to know''. Short reasonably good article explaining CFS - making it clear it's real and quoting Charles Shepherd saying GET can be harmful.
    Article here Thread here
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    Articles, blogs, talks, videos

    Australia #MEAction
    ''National Committee will Issue Report on ME and CFS'' by Sasha Nimmo.
    Raises concerns about the approach taken to ME by the National Health and Medical Research Council, and the lack of transparency in the process of producing the report.
    Article here Thread here post #10

    Trial by Error
    by David Tuller
    ''The CFS/ME Research Collaborative Conference''.
    David Tuller attended the conference which had a biomedical focus. He reflects on the change since Esther Crawley left the CMRC, and shares some of his conversations and impressions.
    Article here Thread here

    Northern Ireland Talks by David Tuller and Brian Hughes on 2nd October at Newry: ''The PACE Trial: 'One Of The Greatest Scandals'.''
    A brilliant double act! Brian Hughes placed PACE in the context of the wider crisis in psychology research, emphasising the unacceptability of using subjective outcome measures in unblinded trials, and outcome switching. David Tuller described his work challenging PACE, explored its flaws further, and asked if it is a case of research misconduct. The video has already been viewed over 8 000 times.
    Video here Thread here

    UK CMRC Conference some of the lecture videos are now available.
    Videos here Thread here post #273
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    Biomedical Research

    Journal of Translational Medicine Review article ''Chronic viral infections in ME/CFS'' by Scheibenbogen et al (EUROMENE)
    Concludes that more research is needed including longitudinal studies and biomarkers for diagnosis and subgrouping.
    Paper here Thread here

    Frontiers in Immunology ''CD24 expression and B cell maturation shows a novel link with energy metabolism: potential implications for patients with ME/CFS'' by Mensah et al
    Paper here Thread here
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    Current research news

    Australia ''Epidemiology of Multiple Somatic Symptoms in the community, and its association with illness related cognitions'', Jones et al
    Large longitudinal study which includes CFS as a somatization disorder.
    Article by Sasha Nimmo of ME Australia expressing serious concern about the study: ''Macquarie University studies hypochondria in chronic fatigue syndrome, MCS and fibromyalgia''.
    Trial information here ... ME Australia article here ... Thread here

    USA CDC Awards NASN $ 1,2 Million Contract to develop school nurse led system to conduct active national surveillance for students who are chronically absent. This specifically includes ME/CFS.
    Article here Thread here

    UK Brighton and Sussex University Hospital and Medical School - Chronic Pain and Fatigue study with Fibromyalgia and ME/CFS patients. Tests include MRI and tilt table.
    Thread here

    UK ME/CFS Biobank samples will be used for a twelve-month study entitled “Role of Sirt1/NOS axis in vascular and immune homeostasis: A missing piece in the ME/CFS puzzle?” by Dr Francisco Westermeier a biochemist in Austria.
    Thread here post #52
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    Petition

    #MEAction ''Per Fink should not spread lies about ME at Columbia University''
    The Danish physician Per Fink uses the diagnosis of Bodily Distress Syndrome (BDS) as a unified umbrella for a number of diseases, including ME. #MEAction demands Per Fink to be uninvited as a speaker at the 4th Columbia University Psychosomatic Conference in New York, Oct. 20th.
    Petition here Thread here
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    Coming events

    UK
    Sheffield ME and Fibromyalgia Group conferences.
    18 October Charles Shepherd, 23/24 October David Tuller ''Scientific Integrity and Clinical Trials''. See the thread for booking details.
    Thread here
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  3. Trish

    Trish Moderator Staff Member

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    Week beginning 8th October 2018

    News

    Holland
    The Dutch Society of GP's has removed ME/CFS guidelines from its website. CBT and GET are no longer recommended treatments.
    Article here Thread here

    USA The USA is the only country to deviate from the WHO's ICD-10 placement for the terms ME, PVFS and CFS. The USA currently places CFS, the term typically used by US doctors, separately in the symptom chapter under Chronic Fatigue. This negatively impacts medical perception, clinical care, and insurance reimbursement. A proposal that CFS be moved back to the neurological chapter, that the term "SEID" be added as a new term, and that CFS, ME, PVFS, and SEID all be given separate codes, is under consideration. The deadline for comments on proposals is November 13.
    Thread here

    UK 250 doctors attended an ME/CFS workshop at Royal College of GP's conference. Speakers at the workshop were Doctors Purdie, Shepherd and Speight. There was also a stand at the conference run by ME charities.
    Thread here
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    Trial By Error by David Tuller.

    ''My latest letter to Archives of Disease in Childhood''.
    David Tuller appeals to Dr. Nick Brown, editor-in-chief of Archives of Disease in Childhood to move his "editor's note" about a clinical trial of Lightning Process so readers of the paper will see it, and to provide a deadline for completion of the process called "editorial consideration". The letter includes additional criticisms of the trial.
    Blog post here Thread here

    "My First Post on the IAPT Program"
    David Tuller is going through some of the IAPT (Improving Access to Psychological Therapies) literature and reports on some "ridiculousness" from a document called National Curriculum for CBT in the Context of Long Term Persistent and Distressing Health Conditions.
    Blog post here Thread here
    ...............................................................

    Research

    Molecular Neurobiology
    ''Immunosignature Analysis of ME/CFS'' by David M. Patrick et al (including Fluge & Mella)
    Explores if there is an immunosignature specific for ME/CFS. The researchers were able to identify a 256-peptide signature that separates ME/CFS samples from healthy controls, suggesting that the hit-and-run hypothesis of immune dysfunction merits further investigation.
    Study here Thread here

    European Neurology Research article: ''Chronic Fatigue Syndrome: From Chronic Fatigue to More Specific Syndromes'' by Blitshteyn & Chopra.
    Suggests a clinical paradigm shift is needed to separate out and treat appropriately conditions such as POTS and MCAS that have been included under the CFS/FM umbrella terms.
    Article here Thread here

    Health Psychology Open "Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review'' by Mark Vink and Alexandra Vink-Niese.
    Excellent detailed analysis of the 2017 Cochrane review of GET for ME/CFS. Discusses flaws in the review and the trials on which it was based, the inadequate evidence on harms, and evidence from the the objective measures in the trials demonstrating that the treatments are ineffective.
    Paper here Thread here
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    Conference and meeting reports

    CMRC Conference
    , September 2018 videos now available and the MEA have produced a detailed conference report outlining the content of all the lectures.
    On the forum a separate thread with video link has been created for each talk.
    MEA report here
    Link to all videos
    Threads for each talk listed and linked here.

    Stanford Symposium September 2018 videos now available. In order to facilitate discussion of each lecture, separate threads have been created.
    List of threads and video links here post #84.

    UK Forward-ME Group Minutes from 17th July 2018 have just been published. Topics discussed include NICE guidelines, CMRC, IAPT psychological treatment, PIP disability benefit.
    Minutes here Thread here

    ..........................................................

    Current research and research news

    USA
    Stanford Neuroinflammation study is currently enrolling patients with severe ME.
    #MEAction article here Thread here

    SMCI Ramsay Awards for 2018 have been announced.
    “Biomarkers of mitochondrial dysfunction and signaling in ME/CFS” Blomberg and Rosen.
    Article here Thread here
    “Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups”, Lombardi.
    Article here Thread here
    “Extracellular vesicles fom ME/CFS Patients and their effect on human mast cells and microglia mediators secretion”, Theoharides
    Article here Thread here
    “Whole genome sequencing and analysis of ME/CFS”, Worthey.
    Article here Thread here

    OMF Meet the team at the ME/CFS Collaborative Research Center at Harvard, funded by OMF.
    Article here Thread here
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    Useful Resources

    MEA
    The ME Association recently made their publication the “ME/CFS/PVFS Clinical and Research Guide” available for kindle and other Amazon e-book readers.
    Available here Thread here
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    Coming events

    Australia
    An episode of the SBS current affairs TV program “Insight” on ME/CFS will be broadcast on 16th October. It is a panel discussion program and lasts 1 hour.
    Details here Thread here

    Sweden 2 conferences about ME on 17th and 18th Oct from the Swedish patient organisation RME. Title of the conferences are: Step by step - Topical research and possible treatments. Some lectures will be in English, others in Swedish. Both events will be streamed and familiar names are among the lecturers.
    Livestream here and here Thread here

    USA NIH: ME/CFS Telebriefing- October 23, 2018
    Thread here

    UK Action for M.E. AGM and Conference 28th November 2018. It will be live streamed.
    Agenda and booking form here Thread here
    ............................................................

    Action

    UK Applications are invited for the CMRC Patient Advisory Group. Closing date 7th November.
    Details here Thread here

    UK #MEAction ''Meet with your MP about ME – Our Toolkit shows you how!''
    Information here Thread here

    USA #MEAction New York is organising a protest on 20th October against Per Fink speaking at a Psychosomatic conference. There is also a petition.
    Occupy ME blog article here Thread here post #60
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    Last edited: Oct 14, 2018 at 10:31 AM
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