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News in Brief - September 2019

Discussion in 'Weekly ME News in Brief' started by Trish, Sep 8, 2019.

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  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 September 2019 written by @Trish and @Kalliope. Scroll down to see this week's news.
     
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  2. Trish

    Trish Moderator Staff Member

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    Week beginning 2nd September 2019

    News

    Canada The Open Medicine Foundation has announced Open Medicine Foundation Canada. OMF Canada is a registered charity with the CRA and all contributions through OMF Canada are tax deductible.
    Website here Thread here

    USA - NIH The report from the NANDSC Working Group for ME/CFS Research is now available. The Sept. 4 presentation of that report was videocast and the recording is also available (relevant section starts at about minute 56:00).
    Report (PDF) here Video here Thread here
    .......................................

    Trial by Error by David Tuller

    Calls for Retraction of the LP study
    Professors Ola D. Saugstad, Vincent Racaniello and Elisa Oltra have written their own comments to Dr. Godlee, editorial director of the BMJ, following up last week's letter signed by 55 academics criticising the BMJ for allowing one of their journals to claim LP (Lightning Process) is effective despite severe methodological faults in the study.
    Letters here Thread here

    Later retired Yale professor and psychiatrist Alan Gurwitt also wrote to Godlee regarding the LP study. Prof. Gurwitt was a co-author of the 2017 Pediatric Primer for ME/CFS. He says: ''I reviewed what was available on the Lightning Process. I came to the conclusion that this treatment was utter nonsense.''
    Thread with letter here

    More on Cochrane's New Risk of Bias Tool
    David Tuller looks at how the new version of Cochrane's Risk of Bias tool makes it easier to rate poor quality trials as having a low risk of bias.
    Article here Thread here

    Podcast Special episode at This Week in Virology: Call me David Tuller
    A new interview with David Tuller in Prof. Vincent Racaniello's podcast TWiV. They talk about what Tuller has been up to in the recent year and touch upon SMC, CDC, the LP study, MUS, the Cochrane review on GET, the infamous Reuters article by Kelland and more. "I don't know why I'm shocked at anything anymore"
    Duration: 73 minutes
    Podcast here Thread here
    ...........................................

    Video, blogs, podcasts, website...

    Australia ABC Radio "Nightlife" featuring Chronic Fatigue Syndrome. Good introduction for a general audience about ME explaining how it is to live with the disease and emphasising it's a biomedical condition. Also a bit about recent research and how damaging GET is as treatment approach. In studio: CEO Heidi Nicholl from Emerge Australia, Prof. Paul Fisher from La Trobe University and ME patient Fiona Cheng.
    Programme here Thread here

    The New Yorker "A town for people with chronic fatigue"
    A "personal history" article by Mike Mariani who sets out to Incline Village, Nevada for treatment with Ampligen by Dr. Daniel Peterson. The article gives an account of the history of Ampligen research and some of the health authorities' scepticism towards CFS throughout the decades.
    Article here Thread here

    UK ME Association on Twitter report that Dr Charles Shepherd and Carol Monaghan, MP, met with senior representatives of the companies that assess people for disability benefits to inform them about the problems and needs of people with ME claiming benefits.
    Thread with links here

    Blog: ME/CFS Research Review "Launch of Canadian research network makes a big statement about ME"
    Simon McGrath with more details on how the recent allocation from the Canadian government on ME research will be spent. Examples are data gathering on PEM, virus hunting and looking for genetic risk for ME/CFS.
    Article here Thread here

    The Harvard ME/CFS Collaboration has just launched a new website introducing their focus, projects and their intent of establishing a Center of Excellence for Chronic, Complex Diseases including ME/CFS, Post-treatment Lyme Disease and Fibromyalgia.
    Website here Thread here
    ...............................................

    Useful Resources

    USA
    The "U.S. ME/CFS Clinician Coalition", a group of ME/CFS experts from the USA, has created a 6-page document covering the basics for diagnosis and management of ME/CFS. This document uses the diagnostic criteria from the 2015 IOM report.
    Document (PDF) here Thread here
    ........................................................

    Biomedical Research

    Preprint (not peer reviewed)
    ''An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients'' by Missailidis et al.
    Immortalized lymphoblasts from 51 ME patients and a matched control group were studied using several methods including Seahorse.
    The results suggest a model in which a Complex V defect in mitochondria is compensated by upregulation of other processes which enables normal ATP synthesis in resting cells, but leaves them unable to respond adequately to increases in energy demand.
    Paper
    here Thread here
    .............................................

    Other Research

    Journal of Bodywork and Movement Therapies

    ''Assessing CFS: Self-reported physical functioning and correlations with physical testing'' by Eyskens et al.
    27 females with confirmed CFS filled in physical functioning and fatigue questionnaires and did 2 physical tests: ‘Timed Loaded Standing’ (TLS), assessing trunk-arm endurance, and the ‘Stops Walking with Eyes Closed while performing a secondary Cognitive Task’ (SWECCT), measuring impaired automaticity of gait.
    TLS correlated significantly with SF-36 physical functioning. None of the other associations was significant. The authors suggest TLS may be a useful monitoring tool for CFS.
    Paper here Thread here


    Neurasthenia
    Recently, several papers have been published on the history of neurasthenia; an old diagnosis in which some researchers see a forerunner of ME/CFS. Unfortunately, we could only find the abstracts of the papers, one of which is written in Spanish. Here’s a brief overview:

    Overholser et al. (2019). Neurasthenia Modern Malady or Historical Relic?
    Article here Thread here

    Tripathi et al. (2019). Modern-Day Relics of Psychiatry.
    Article here Thread here

    Murga & Lafuente (2019). From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis.
    Article here Thread here
    Thesis
    ''Sickness behaviour in ME/CFS'' by Martin Jonsjö
    Compares 'sickness behaviour' in ME/CFS patients with those with chronic pain and healthy people. Suggests Acceptance and Commitment Therapy as treatment.
    Details here Thread here
    ...............................................

    Research recruiting participants

    Australia LaTrobe University, Melbourne. Healthy volunteers are needed for a new ME/CFS study. 60 minutes, questionnaires, blood draw and optional skin biopsy.
    Details here Thread here

    USA Florida - Institute for Neuro-immune Medicine. Females with ME required for study ''ME/CFS: Detecting Mycotoxin Subgroup'' involving questionnaires and blood draw.
    Details here Thread here

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

    Fundraising


    Canada Action CIND is hosting a fundraiser for ME research on Saturday, Sep. 14 in Stouffville, Ontario. #Run4ME includes a 5K/1K run/walk as well as a silent auction.
    Donate here Thread here
    ...............................................

    Coming events


    USA Sept 10th Georgia Nurses Association - Free Webinar: 'ME/CFS & the Pediatric Patient' with Professor Robert Pendergrast. CME and CNE credits for learning about diagnosis and management. No information available on what sort of advice will be given.
    Information here Thread here


    Sweden Sept. 19th & Oct. 2nd
    Two seminars for doctors about ME and chronic fatigue hosted by the journal of the Swedish medical association. Lecturers on ME are senior doctor Per Julin and professor Jonas Bergquist.
    Thread with link to programme here

    UK Oct. 19th
    David Tuller - Discusses ME/CFS and the UK Medical Establishment
    David Tuller gives a talk about "his latest activities, findings and thought about the UK medical establishment, how ME/CFS and MUPS patients are treated/mistreated and explore the reasons why".
    The event is organised by Omega (Oxfordshire M.E. Group for Action) and will take place in Oxford Oct. 19th from 14.00 - 16.00.
    More details here Thread here
    ...............................................

    S4ME social media: Facebook, Twitter and You Tube
     
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  3. Trish

    Trish Moderator Staff Member

    Messages:
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    Location:
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    Week beginning 9th September 2019

    News

    The Netherlands
    The Dutch ME/CFS Association has published the results of a patient survey that was conducted online in 2017 and had valid results for 418 respondents. Of the patients who had followed cognitive-behavioural therapy (CBT) approximately half said the treatment had a negative effect on their health. Many said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow CBT. An English summary of the survey will be published soon.
    Survey here Thread here
    ...................................................

    Trial by Error by David Tuller

    More Experts Urge Godlee to Retract Lightning Process Study

    Several experts have written their own letters to Dr Godlee in addition to a recent joint letter signed by 55 academics criticising the BMJ for having published the Lightning Process study. The newest contributions are from Dr Alan Gurwitt, Prof. Marlon Maus and Prof. Jonathan Edwards.
    Article with letters here Thread here

    Experts Send More Tough Letters to Dr Godlee
    More damning letters from Dr Steve Olson from Kaiser Permanente, Prof. Alison Bested from Nova Southeastern University, Prof. Rebecca Goldin from George Mason University, Prof. Ronald Tompkins from Harvard Medical School and Prof. Brian Hughes from National University of Ireland.
    Letters here Thread here
    .........................................

    Media and blogs

    The Faculty Lounge "Prof. Rebecca Goldin's Letter on Flawed Research Design at BMJ Archives of Disease in Childhood"
    Article by Prof. Steven Lubet about the open letters scientists, physicians and academics have sent to BMJ editor Dr Fiona Godlee concerning the Lightning Process study (see above items). Prof. Goldin's letter is shared in full as "short and powerful, and an excellent example of persuasive writing that could serve as a model for lawyers and law students".
    Article here Thread here

    Norway "A Messiah in the Norwegian health system? Lightning Process and the Norwegian medical establishment"
    Blog post by Nina E. Steinkopf about Lightning Process and its entry into Norwegian medical establishment.
    Article here Thread with Google translation here

    USA WCAI - The Cape, Coast and Islands NPR Station: "Thousands of Studies Begin to Paint New Picture of Chronic Fatigue Syndrome"
    Radio program and article interviewing Prof. Anthony Komaroff on the latest advances in medical research into ME.
    Article and radio program here Thread here

    UK The Metro website has a weekly series called "You Don't Look Sick" which tells the stories of people with invisible illness and disabilities. The Sept. 8th column features a woman with ME and vestibular migraines.
    Article here Thread here

    Germany A radio program on the public broadcast Bayerischer Rundfunk (BR) called Wissenschaft und Technik included a 5-minute report on the dire situation of ME/CFS patients in Germany. Science journalist Yvonne Maier mentioned the problems with exercise therapy and the controversial studies on which this treatment is based. Maier used the word ‘scandal’ to describe the care of ME/CFS patients in Germany.
    Broadcast here (starts at minute 3:50) Thread here

    BookTrust "Canaries in the coalmine: Why Marcus Sedgwick is writing about Chronic Fatigue and illnesses we all need to understand better"
    Author Marcus Sedgwick has just released the book "Snowflake, AZ"; a pre-apocalyptic story about an isolated community in USA calling themselves the Canaries and suffering from a sickness no-one understands. In the article Sedgwick tells the background for the book as he suffers from CFS/ME or Multiple Chemical Sensitivity himself and this made him seek out the community.
    Article here Thread here
    .....................................

    Useful resources

    Online training for school nurses
    Northeastern University (USA) School of Nursing
    ''Why Can't This Child Get to Class? Learn how ME/CFS keeps youth from attending school'', with Dr Peter Rowe, pediatrician; nurse Lisa Hall, and two mothers of children with ME.
    Forum member Hutan has provided a helpful review of the mostly good and some less good features of this 3.5 hour course.
    Course details and signup here Thread here

    German medical journal Ärzteblatt Sachsen
    Dr. Carmen Scheibenbogen and colleagues have published an overview on ME/CFS. Translated into English the title reads “Chronic fatigue syndrome (CFS): Practical recommendations for diagnostics and therapy.” The article includes a section on children and adolescents with ME/CFS and has been positively received on social media.
    Article here (in German) Thread here
    .......................................

    Biomedical Research Videos

    Stanford Symposium The 3rd Annual Community Symposium was held on 7th September and live-streamed. The videos will be put on You Tube. There was news of revamping the ME/CFS center at Stanford. Research news included more evidence of 'something in the blood'. The research on red blood cell deformability has not shown a difference from healthy patients' cells but both groups showed significant heterogeneity - more experiments are planned.
    Live-stream summary here Thread here

    Science for ME Q&A with Dr Karl Morten, University of Oxford.
    In a two part interview, Dr Morten of Oxford University tells @Andy how he became interested in researching ME, and answers forum members' questions about his recent paper on the Acumen test, his research showing 'something in the blood', and his future hopes and plans for continued research including collaborations with researchers in the UK, Spain and Poland. Part 1 - 28 minutes, Part 2 - 40 minutes.
    Thread with links to videos here

    ME/CFS Alert "Finding an ME/CFS Biomarker, Ronald Davis, Stanford University"
    Llewellyn King interviews Prof. Ron Davis. They talk about his research, the struggle for more research funds, data collecting and the hypothesis about the metabolic trap as a possible explanation for ME and more. Duration: 25 minutes.
    Interview here Thread here
    ........................................

    Biomedical research


    European Journal of Applied Physiology "Unexplained exertional intolerance associated with impaired systemic oxygen extraction" by Kathryn H Melamed, David M. Systrom et al
    The researchers reviewed invasive cardiopulmonary test results of 313 patients with unexplained exertional intolerance. The paper focuses mainly on a small subset of patients: "We identified a cohort of patients whose exercise limitation is due only to systemic oxygen extraction, due to either an intrinsic abnormality of skeletal muscle mitochondrion, limb muscle microcirculatory dysregulation, or hyperventilation and left shift the oxyhemoglobin dissociation curve" They indicate that these patients had a diagnosis of ME/CFS.
    Paper here Thread here

    JAMA Neurology
    ''Scientific Advances in and Clinical Approaches to Small-Fiber Polyneuropathy - A Review'' by Oaklander and Nolano.
    A common condition often undiagnosed causing chronic bilateral neuropathic pain, fatigue, and nausea. Diagnosed by skin biopsy. ''...evidence suggests that small-fiber dysfunction and denervation, especially of blood vessels, contributes to diverse symptoms, including postexertional malaise, postural orthostatic tachycardia, and functional gastrointestinal distress''.
    Article here Thread here

    Student thesis
    'Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol' by Pelligrini.
    Aggregated results from 45 participants with ME/CFS compared with healthy controls found ''essentially the same regions of the brain shown to be abnormal as the SPECT studies done of ME brains by Dr. Byron Hyde''.
    Thesis here Thread here

    Pharmacological Research
    ''ME/CFS: From Pathophysiological Insights to Novel Therapeutic Opportunities'' by Berk et al.
    After a brief overview of some biomedical research most of this article looks at some treatments the authors think might be worth testing for ME/CFS, including coenzyme Q10, melatonin and curcumin. Most of the evidence they cite comes from animal studies, and studies on people with other conditions. They also discuss CBT/GET concluding they only have modest benefits for some people and GET may cause harm.
    Article here Thread here

    Notes on mitochondria research
    Forum member Simon M. has written some helpful notes on the paper listed in last week's news by Missailidis et al (including Paul Fisher) that found a problem with Complex V in the mitochondria of people with ME.
    A short guide to mitochondria and complex V here
    Comments on the research here
    ......................................

    Other research

    Quality of Life Research

    “Psychometric properties of the PROMIS® Fatigue Short Form 7a among adults with ME/CFS” by Yang et al.
    Yang and colleagues tested a short 7-item fatigue questionnaire in a large sample of 549 ME/CFS patients recruited in the CDC’s Multi-Site Clinical Assessment study. The questionnaire showed good internal consistency. Although no floor or ceiling effects were found at the total score level, the questionnaire had trouble differentiating patients who worsened over time versus those who remained stable.
    Article here Thread here

    Health Care for Women International
    “Recovering from CFS as an intra-active process” by Groven & Dahl-Michelsen.
    The authors, from the Institute of Physiotherapy in Oslo, Norway have published an article on a woman recovering from ME/CFS through the Lightning Process. The woman explains how she improved by changing her thinking and telling herself: “I am not going back to CFS; I am going to have a life that I love.”
    Not a recommendation.
    Study here Thread here
    ......................................

    Fundraising

    USA A donor has offered to match up to $25,000 in donations to Cornell University's Center for Enervating NeuroImmune Disease to support their research on immune dysregulation in ME/CFS. For a description of this research watch Dr. Maureen Hanson's presentation from the OMF Community Symposium.
    To donate go here Thread here
    ......................................

    Coming events

    USA The CDC ME/CFS Stakeholder Engagement and Communication group will hold a conference call on Sept 16, 2019, from 3:00 to 4:00 pm EDT (noon PDT, 8:00 pm BST, 5:00 am AEST). Participants can call in or join the meeting using the webinar format.
    CDC webpage here Thread here

    Europe The petition that asks the European Union for increased funding for biomedical research into ME will be discussed at the meeting of the Committee on Petitions on October 3rd. It will be live streamed.
    Thread with details here
    ..........................................

    In memory

    Dr Peter Behan

    ''Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron''.
    The UK MEA has published an article by Dr Charles Shepherd with his memories of neurologist Dr Behan and his care for patients. ''Unlike most of his neurology colleagues he had no doubt that M.E. was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.''
    Dr Behan passed away on 31st August, aged 84.
    MEA article here Thread here (members only)
    .........................................

    S4ME social media: Facebook, Twitter and You Tube

    Edited to correct spelling mistake.
     
    Last edited: Sep 15, 2019 at 5:34 PM
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