Trial By Error: S4ME Summary for Week of January 14th

By David Tuller, DrPH

As I mentioned in my six-month review, I always feel that there are lots of issues I don’t get to. To broaden the blog’s range a bit and, hopefully, increase its usefulness to readers, I figured it was a good idea to post the weekly round-up of news posted on the invaluable Science For ME forum. (Thanks, @Trish and @Kalliope for compiling the round-ups and S4ME for allowing me to re-post them.)

I am on the forum regularly and find that the smart, free-ranging discussions, comments and updates are critical for my own understanding of events. I recommend it highly to anyone with an interest in this issue.

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Week beginning 14th January 2019

Headline News

UK Parliamentary Debate this Thursday. Contact your MP.
House of Commons backbench debate on ME/CFS will take place on Thursday 24th January led by Carol Monaghan.

Motion to be debated and voted on:

That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.

#MEAction: links for contacting your MP here article here
ME Association article with links to contact your MP here
Parliamentary briefing here
Article in The Canary here Thread here
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News

Belgium – Extension of the ME/CFS convention.
@Michiel Tack has summarized the Belgian assessment report. On the positive side, the report highlights biomedical findings and acknowledges problems with the PACE-trial, GET and the oxford criteria. The negative side is that the authors cling on to CBT, despite their results being rather poor.
Thread with summary here

Invest in ME and European ME Alliance are facilitating the formation of the European ME Clinicians Council (EMEC)
It will bring together clinicians in the field of ME and form a network that can improve the knowledge of clinicians in Europe and act as a focal point for healthcare agencies, doctors and media outlets who wish to learn more from experienced clinicians.
Presentation from Invest in ME here Thread here
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Letters, talks …

UK – Open letter to AfME @Trish has written a personal open letter to Action for ME asking them to withdraw their document ”Support, empower and employ people with M.E. A toolkit for professionals”.
Concerns are detailed about inaccuracies and the emphasis on rehabilitation and goal setting, especially as the document has been circulated to DWP staff who deal with unemployment and disability benefits.
AfME have replied saying they will not withdraw the document but it will be reviewed as part of their ongoing reviews process.
AfME ‘Toolkit’ here Thread with letter here Reply from AfME here

David Tuller’s lecture: The PACE Trial: “Thing of beauty or Pile of Crap” from a seminar in Norway in November 2018 is now available on YouTube.
Thread with link to video here
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Biomedical Research

Nature Genetics
”Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes” by Lakhani et al.
Data from twins suggests a large genetic component in ME/CFS and very little environmental influence (with some caveats).
Paper here Thread here

International Journal of Immunopathology and Pharmacology
”Changes in the transcriptome of circulating immune cells of a New Zealand cohort with ME/CFS” by Sweetman, Tate et al.
Small study showed molecular changes including relating to inflammation, cellular stress response, metabolism, mitochondria and circadian clock.
Paper here Thread here

Clinical Therapeutics
“Relationship Between Exercise-induced Oxidative Stress Changes and Parasympathetic Activity in CFS: An Observational Study in Patients and Healthy Subjects” – Andrea Polli et al
Data from 36 participants (women with CFS and healthy controls) performing exercise test. Oxidative stress showed an association with pain symptoms in people with ME/CFS, but no exercise-induced changes in oxidative stress were found. The change in parasympathetic activity following exercise partially accounted for the change in oxidative stress in healthy controls.
Paper here Thread here
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Other research

Frontiers in Pediatrics
”Onset patterns and course of ME/CFS” by Chu, Montoya et al
Results from survey with 150 ME patients (Fukuda criteria) from USA. Most findings consistent with prior studies, but also explores new topics including evolution of symptoms.
Article here Thread here
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Psychosocial news

Denmark – Journal of Psychosomatic Research
Letter to the editor by director of Danish Health Authority where he argues that it makes sense for the Danish Health Authority to accept the diagnostic umbrella term of “functional disorders”. ME belongs under this umbrella according to him. Not a recommendation.
Letter to the editor here Thread here
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Coming Events

Norway ME-conference March 26-27
“A health political, biomedical ME conference” with Norwegian lecturers.
Website to conference here Thread here

NIH conference April 4-5th ‘Accelerating Research on ME/CFS’
The goal is to present high-quality studies of ME/CFS to better understand the state of science and help drive the field forward. For scientists, clinicians, patients and other ME/CFS stakeholders. Conference will be webcast and publicly available.
More information here Thread here

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