1. Guest, read the 'News in Brief' post for w/c 07/01/19 here.
    Dismiss Notice

News in Brief - January 2019

Discussion in 'Weekly ME News in Brief' started by Trish, Jan 6, 2019.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    9,538
    Likes Received:
    52,797
    Location:
    UK
    This thread has a Science for ME News In Brief post for each week in January 2019 written by @Trish and @Kalliope. Scroll down to find this week's news.
     
    Esther12, Forbin, TiredSam and 4 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    9,538
    Likes Received:
    52,797
    Location:
    UK
    Week beginning 31st December 2018

    Newsletters, lectures

    The ME Global Chronicle
    - extensive and informative international newsletter including items on research, politics and advocacy. Released Dec. 30th
    Newsletter here Thread here

    Norway - Two lectures from a seminar in Nov. 2018 by the Norwegian ME Association with the ME researchers prof. Karl Johan Tronstad and prof. Benedicte Lie are available on YouTube. Lectures are in Norwegian.
    Thread with links and English summary of prof. Lie's lecture here

    David Tuller interview from the Norway meeting is now available to watch. 20 minutes in English with Norwegian subtitles. David answers questions about the flaws in the PACE trial and why it has been so hard to get it, and the treatments based on it, overturned. Also discusses the false descriptions of challenges to the trial as anti-scientific and vexatious.
    Thread with link to video here
    ......................................................

    Biomedical Research

    Clinical Hemorheology and Microcirculation
    ''Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome'' by Anand Ramasubramanian et al. (including Ron Davis).
    Full paper now published. Small study concludes 'Our observations suggest that RBC transport through microcapillaries may explain, at least in part, the ME/CFS phenotype, and promises to be a novel first-pass diagnostic test.'
    Paper here Thread here

    Psychiatry Investigation
    ''Multidimensional Comparison of Cancer-Related Fatigue and Chronic Fatigue Syndrome: The Role of Psychophysiological Markers'' by Park et al.
    Found comparable levels of psychological variables and fatigue in CFS and CRF. Differences between the groups on heart rate variability, EEG and C-reactive protein suggest different pathophysiological mechanisms underlie CFS and CRF, and frontal EEG as a possible biomarker for CFS.
    Abstract here Thread here
    .........................................................

    Diagnosis

    Frontiers in Paediatrics
    - Perspective article
    ''The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary'' by Geraghty and Adeniji.
    Abstract only. Provisionally accepted for later publication. Study of epidemiology of ME/CFS shows wide variation in prevalence due to too loose definition of ME/CFS. The paper will include recommendations for better clinical diagnosis and epidemiology.
    Abstract here Thread here
    ..........................................................

    Coming events

    Australia International Research Symposium, Geelong, 12-15 March 2019.
    ''ME/CFS. The biological basis, diagnosis, treatment, and management''.
    Hosted by Emerge, supported by government funding. A special issue of the journal Diagnostics will include the speaker submissions and other accepted manuscripts.
    Details here Thread here
    ...................................................
     
    Last edited: Jan 6, 2019
    Esther12, Forbin, DokaGirl and 16 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    9,538
    Likes Received:
    52,797
    Location:
    UK
    Week beginning 7th January 2019

    News


    UK 'Action for ME hosts Spotlight Training' - a telephone Q and A session for the DWP (which deals with state unemployment and disability benefits). AfME has also provided the DWP staff with their 40 page 'See ME Toolkit' which focuses on rehabilitation and getting people with ME back to work. Serious concerns about this material are raised on the thread.
    AfME article here See ME Toolkit here Thread here

    Cochrane
    Caroline Struthers has received an underwhelming response from the Cochrane editor in chief, David Tovey, to her complaint about the Exercise as treatment for patients with chronic fatigue syndrome review. Includes Struthers' description of subjective outcomes in unblinded trials as ‘terrible methodology’, which is dismissed by Tovey as "simply an opinion".
    Struther's complaint and Tovey's reply here Thread here
    .......................................................

    Articles, blogs, meetings etc.

    Lucibee's Blog ''Why use of subjective measures in clinical trials can be problematic''. Excellent article explains objective and subjective measures, and the problems with using subjective measures in unblinded trials.
    Blog post here Thread here

    UK Forward ME group minutes from November 2018. Includes discussion with a representative of the Health Ombudsman and a planned survey of patients to help the NICE guideline committee (see below).
    Minutes here Thread here

    STAT Opinion: ''The NIH is thwarting research on a poorly understood yet serious condition'' by Jennifer Spotila.
    Describes the lack of sufficient research funding for ME/CFS by NIH and 5 obstacles that scientists must navigate on the path to funding that place higher hurdles for research on ME/CFS than other conditions.
    Article here Thread here
    ..........................................................

    Trial by Error by David Tuller

    My Letter to LP's Study's Senior Author
    The letter's subject heading: “Retrospective Registration and Outcome-Swapping in Lightning Process Trial.” Addressed to senior author, Alan Montgomery, a professor of medical statistics and clinical trials.
    Copies were also sent to the relevant journal editors, 3 MP's and 3 members of the NICE guideline committee. The letter explains the problems with the trial, the background of LP and its creator, and suggests the senior author should take responsibility and the paper should be retracted.
    Article with letter here Thread here

    More Thoughts on the Interferon Study
    Article about the Science Media Centre's involvement in the recent big press coverage of Pariante's study which claimed post interferon treatment fatigue was a proxy for CFS. Tuller contrasts Pariante's study with Leonard Jason's prospective study of students who develop CFS following EBV infection.
    Article here Thread here
    ....................................................

    From the media

    Norway

    A regional newspaper has written about the petition against the national competence service for CFS/ME and their biopsychosocial approach to ME. The petition has over 6,300 signatures and will soon be delivered to the Ministry of Health and Care services.
    Thread with translation of article here

    Ireland
    The Journal: Opinion: 'Nobody should have to live like this - I need more care to meet my basic needs' by Corina Duyn.
    Corina has had severe ME for many years and is not being provided the basic care she needs because the agency in Ireland does not recognise ME as a disability.
    Article here Thread here
    .......................................................

    Useful Resources

    UK
    Very useful resources on ME/CFS for GP's and patients developed by the Suffolk patient and carers group with medical advice from Prof Jonathan Edwards.
    Items: Referral booklet for GP's and patients; Key Information; What patients say helps.
    Website with links to resources here Thread here
    .........................................................

    Research News

    MECFSnet website is now live. This is the website for the ME/CFS Research Network set up for collaboration between the research hubs funded by the USA NIH, including Columbia and Cornell Universities, Jackson Labs and RTI Data Coordination Center as well as NIH itself.
    Website here Thread here
    The website also lists studies currently recruiting participants. See item below.

    Frontiers in Paediatrics Special issue
    Research topic ''Advances in ME/CFS Research and Clinical Care''
    Individual papers are being published on line as they become available. The complete paper issue of the journal will be published later.
    Details here Thread here with links to published papers and thread discussions.
    .........................................................

    Biomedical Research

    Brain, Imaging and Behaviour

    ''Evidence of widespread metabolite abnormalities in ME/CFS: assessment with whole-brain magnetic resonance spectroscopy'' by Younger et al.
    Small study using female patients and controls found significant biochemical differences in several regions of the brain that correlated with fatigue. Also found raised temperatures in some regions that were not correlated with body temperature or perfusion. Conclusion: ME/CFS may involve brain inflammation.
    Paper here Thread here
    ........................................................

    Other research

    Frontiers in Neurology

    "Neuroinflammation and cytokines in ME/CFS: A critical review of research methods" by VanElzakker et al
    A review on neuroinflammation and methods used for measuring it. Recommends more emphasis in future on potential mechanisms driving symptoms rather than on descriptive studies. Full paper now published.
    Paper here Thread here

    Frontiers in Paediatrics
    ''Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning'' by Valdez et al.
    Full paper now published. Open access.
    Paper here Thread here

    Open Access Emergency Medicine
    ''Chronic Fatigue Syndrome in the emergency department'' - Baraniuk et al.
    A pilot online survey (n=282) exploring common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters. Points to orthostatic intolerance as the most frequent acute cause for visits and suggests using a questionnaire to screen CFS patients in addition to more education and guidance for ED staff about CFS.
    Paper here Thread here

    Health Expectations
    "Hope, disappointment and perseverance: Reflections of people with ME/CFS and Multiple Sclerosis participating in biomedical research. A qualitative focus group study" by Lacerda et al
    28 participants at the UK ME/CFS Biobank (UKMED) with either ME or MS participated in focus groups. The study gives insights into the emotional, social and practical importance of research to patients with ME or MS as well as suggesting specific research topics and arguing for a more collaborative research culture.
    Paper here Thread here
    .........................................................

    Study recruitment

    USA
    As described above, the NIH funded network of centres studying ME are recruiting for studies, listed below:
    Bateman Horne Center: 'Advancing Biomarker Research'
    Details here Thread here
    Cornell University: Neuroimaging study.
    Details here Thread here
    Cornell University: Neuroimmune study. Also needs healthy inactive controls.
    Details here Thread here
    Columbia University: Exercise tolerance testing.
    Details here Thread here

    USA NIH is seeking volunteers with ME/CFS to participate in a focus group which will be used to learn more about Post Exertional Malaise (PEM). They also want to learn from experiences with Cardio Pulmonary Exercise Testing (CPET).
    Article here Thread here

    USA Stanford - Neuroendocrine study - looking for female ME patients aged of 18-45 not taking oral birth control for in-depth look at the different hormone systems.
    Thread here
    .....................................................................

    Surveys


    UK Forward ME Group CBT/GET Survey - Tell NICE your experiences.
    Survey closes 31st January 2019. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
    Survey here Thread here
    ...........................

    MEA
    The ME Association January survey designed by a medical student. The data will be used in a student report and may be published or taken to conference. The survey asks 'What are the most important things a GP needs to know about M.E.?' You can participate from any country.
    More info and link to survey here Thread here
    ............................................................
     
    Dolphin, Pyrrhus, Snowflake and 7 others like this.

Share This Page