News in Brief - April 2018

[Trish]

This thread contains a news post for each week in April. Scroll down to find the current week.
....................................................................................

Week beginning 2nd April 2018

News

Australia SBS Television program The Feed - ''Fighting Disbelief - Chronic Fatigue Syndrome''. Excellent short program about the difficulties getting disability benefits - includes people with ME, doctors and David Tuller.
Video here Thread here David Tuller comment here

Australia ''Trial By Error: A Post About Andrew Lloyd'' by David Tuller.
Andrew Lloyd is Australia's most prominent proponent of GET/CBT for ME/CFS.
Article here Thread here

Australia ''Chronic Fatigue Syndrome (aka ME) - Challenging the accepted dogma through research journalism'' Public lecture by David Tuller at the University of Tasmania.
Audio recording here Thread here

Solve ME/CFS Initiative: Discovery Forum 2017: Presentation of Dr. Maureen Hanson now available on YouTube video.
Video here Thread here

UK The Countess of Mar, on behalf of Forward ME has written to the Science Media Centre asking them to retract their recent 'Fact sheet' on CFS/ME.
Letter here Thread here
.............................................................

Research

Plos one Lower regulatory frequency for postural control in patients with fibromyalgia and chronic fatigue syndrome, 2018, Stensdotter et al
Suggests deficits in sensorimotor and visual processing in ME/CFS and FM.
Paper here Thread here

International Journal of Clinical and Experimental Medicine ''KPAX002 as a treatment for ME/CFS: a prospective, randomized trial'', 2018, Montoya et al.
Low-dose methylphenidate hydrochloride combined with micronutrients to support metabolic function tested in stage 2 double blind trial. Did not reach statistical significance over 12 weeks.
Paper here Thread here

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

Biomedical news

Ampligen Early access program has been extended to Canada. First batch of the drug due in May. Ampligen is still awaiting Stage 3 trials.
Thread here
...........................................................

Psychosocial news

Trial by Error - ''Our Latest Tango with BMJ Open…''
Further correspondence with the BMJ about studies by Esther Crawley.
Article here Thread here
........................................................................

Threads of interest

World Health Organisation Discussion about whether there is to be a change in classifications which may affect ME/CFS.
Thread here

Action for ME responds to our question about their views on the PACE trial.
Thread here

New Zealand talk by Phillida Bunkle on the role and needs of carers for PWME and the PACE trial in its political context. From December 2017.
Video here Thread here
...........................................................

Action

David Tuller ''Trial By Error: My Berkeley-Backed Crowdfunding Campaign is now officially open''. Donations invited for the month of April to enable David to continue his work on our behalf.
Article here Thread here Crowdfunding page here

Germany Millions Missing 12th May Berlin. For more information see post #137 in the thread.
Thread here
..................................................................

Coming events

Solve ME/CFS Initiative announce their webinar series for this year, including interviews with Hanson, Komaroff and Unutmaz.
Newsletter here Thread here
.....................................................................

In Memory

This week we hear of more tragic deaths of people with severe ME, including a newspaper article about 21 year old Merryn Crofts.
Article here
The members only area of the S4ME forums includes a forum 'In Memory of...' where we mark the loss of sufferers of ME.
.....................................................................

 

[Trish]

Week beginning 9th April 2018

News

Australia The Feed: ''OPINION: NDIS must recognise chronic fatigue or suicide will follow''.
Article here Thread here

Australia David Tuller: ''Trial By Error: My Australian Tour, Continued''
Article here Thread here

Sweden - media reports that GET is not helpful for ME/CFS.
Thread here

USA Healthwise, which provides medical content for many major healthcare corporations in the United States, is to "retire the GET/CBT topics" from medical content.
Thread here

USA Inside Sources: "Congress to Hear From an Army of Very Sick Petitioners" by Llewellyn King.
ME/CFS patients to petition congress for more research funding May 12th, 15th.
Article here Thread here

UK Huff Post article ''I Am Stuck In The Prison That Is ME'' by Ellie Bunce.
Article here Thread here

UK ME Association - Advertising Standards Uphold Complaint Against Gupta Programme for ME/CFS and Fibromyalgia
Article here Thread here
..............................................................

Research papers, articles and video

Autoimmune Review ''ME/CFS - Evidence for an autoimmune disease'' by Sotzny et al., (EUROMENE).
Article here Thread here

Journal of Translational Medicine ''Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection'' by Richardson et al. Includes cytokine measurements.
Paper here Thread here

MDPI - Challenges ''ME, CFS and SEID: Three Distinct Clinical Entities'' by Frank Twisk. Suggests ME and CFS have different definitions, so ME/CFS doesn't exist and cannot be replaced by a new clinical entity, SEID.
Article here Thread here

British Journal of Healthcare Management ''Chronic fatigue syndrome: the ongoing medical debate'' (2018) - George Winter
Paywalled. On message.
Article here Thread here

SMCI Discovery Forum 2017: Presentation of Dr. Rick Williams, Principal Investigator for Medical & Public Health Research at RTI International which won the NIH funding for the Data Management Coordinating Center part of the Collaborative Research Centers funding.
Video here Thread here
................................................................

Psychosocial

BMJ Paediatrics Open ''Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort'', Wyller et al (2018)
Not a recommendation.
Paper here Thread here

BioPsychoSocial Medicine ''Changes in fatigue, autonomic functions, and blood biomarkers due to sitting isometric yoga in patients with CFS'' by Takakazu Oka et al.
Small study looking at the immediate effects of a single session of yoga. Not a recommendation.
Paper here Thread here
.........................................................

Advocacy

#MillionsMissing London Excellent letter addressed to and published by The Free Psychotherapy Network.
Letter here Thread here
.............................................................

Action

Survey Leonard Jason, well respected De Paul University researcher, invites ME/CFS patients to take part in a PEM survey.
Survey here Thread here

Donations A reminder that David Tuller's crowdfunding ends April 30th.
Article here Thread here Crowdfunding page here
.......................................................

Coming events

USA Conference Bateman Horne Center - Clinician Conference, April 27, 2018
Thread here

#MillionsMissing 12th May 2018
UK thread here
USA thread here

UK Invest in ME conference June 1st 2018. More details about speakers including Carol Head of SMCI to give the pre conference dinner lecture.
Thread here
.................................................................

 

[Trish]

Week beginning 16th April 2018

In the media

UK Business Insider article ''What it's like to have Chronic Fatigue Syndrome, an illness that makes you feel exhausted all the time'' by Alison Millington.
Article here Thread here

UK Liverpool Echo ''Devastating ME leaves teen girl "unable to leave the house". Good article about Rosie Halsall who has severe ME, with comment by Charles Shepherd.
Article here Thread here

UK BBC Radio York. Good 45 minute programme about ME with several interviews with pwme.
Radio link here Thread here

Sweden Very good article in the Swedish women's magazine Året Rundt.
Thread here post #127
...........................................................

Trial By Error by David Tuller:

Two Interview Podcasts, and "Conflict of Interest". Two excellent radio interviews in Adelaide and Perth. David also raises a twitter discussion on whether his crowdfunding is a conflict of interest.
Article link here Radio Adelaide link here Perth interview here Thread here

Guest Post: ''Crowdfunding David Tuller Is Not a Conflict of Interest'' by Steven Lubet. Law professor refutes PACE PI's COI attack on Tuller.
Article here Thread here

''Professor Michael Sharpe’s Gaffe on Australian Radio.''
Article here Thread here
.................................................................

News of ME organisations

UK - Action for ME has updated its information on GET and CBT. An improvement.
AfME link here Thread here

USA - SMCI 3 minute video: ''Fighting for M.E. with Carol Head''. Summarises current research and advocacy roles.
Video here Thread here

UK - Forward ME Minutes of meeting 21st April including talk by Diane O'Leary about UN classifications.
Minutes here Thread here

UK - Journalist @Gary Burgess with support from the MEA launches iTunes series 'The ME Show'. First broadcast 7th May.
Thread here
.....................................................................

Biomedical research

Bioscience Reports ''Pharmacological activation of AMPK and glucose uptake in cultured human skeletal muscle cells from patients with ME/CFS'' by Newton et al.
Paper here Thread here

Biochemical Society Transactions ''Metabolic abnormalities in CFS/ME: a mini-review'' by Tomas and Newton.
Article here Thread here
.................................................................

Psychosocial research

Physiotherapy ''Symptoms of CFS/ME are not determined by activity pacing when measured by the chronic pain coping inventory'' by Thompson et al.
Paper here Thread here
................................................................................

Useful resources

New York State: Department of Health information page on ME (CFS) updated April 2018.
Excellent short summary explicitly removes GET/CBT from treatment advice.
Document here Thread here
...........................................................................

Action

David Tuller Berkeley Crowdfunding Update: The Home Stretch...
Donations end 30th April 2018.
Update and donations here Thread here
............................................................................

Coming Events

Millions Missing 12th May 2018
UK Edinburgh - MP Carol Monaghan to speak.
Thread here

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

 

[Trish]

Week beginning 23rd April 2018

News from around the world

After Unrest Half hour video ''After Unrest - When health professionals and patients unite'' by Ketra Wooding who speaks from her nursing home bed, and the talks after a showing of Unrest in Queensland.
Video here Thread here

UK ME Association announces the launch of 'The ME Show' podcast series, presented by @Gary Burgess and available on i-tunes and other platforms.
Article here Thread here

A song for ME ''Blowin' in the Wind, with alternative lyrics by Robert Saunders'' written and performed by @Robert 1973 and others now available on YouTube.
Video here Thread here

Norway Lightning Process re-classified as an alternative health treatment not a self help training, and therefore comes under stricter laws. Good news.
Thread here

UK Action for ME has a new(ish) plan to lobby the World Health Organisation in Geneva. Some information is emerging about their plans.
Thread here

Finland Article and documentary about ME.
Thread here
.....................................................................

Trial by Error

''The Shopping Bag Study; and New York State’s Revamped Website'' by David Tuller. Highlights a ridiculous UK study, and an excellent New York State Department of Health statement about ME/CFS.
Article here Thread here

''Andrew Lloyd’s Past Endorsement of PACE'' by David Tuller. Reveals Prof. Lloyd's previous published endorsement of PACE trial papers.
Article here Thread here

''Goodbye, Australia; and Two Updates'', includes @Tom Kindlon's response to Prof. Lloyd, and more on the shopping bag study.
Article here Thread here
...................................................................

Biomedical Research

Epigenomics ''Integration of DNA methylation & health scores identifies subtypes in ME/CFS'' by de Vega et al.
Paper here Thread here
..................................................................

Articles about biomedical research

SMCI - Research highlight article - ''Association of CFS with premature telomere attrition'' discusses research published in March 2018.
Article here Thread here

ME/CFS Research Review - ''A new research landscape emerges in America'' by Simon McGrath. Latest blog post looks at the new NIH funded centres.
Article here Thread here

Eureka Alert ''Helmholtz researchers get to grips with a herpesvirus'' (HHV-6).
Press release from German researchers mentions possible implications for ME/CFS.
Article here Thread here
.....................................................................

Useful Resources

MEPedia gets a new look. The front page has been redesigned by Jen Brea (@JenB), making the site more attractive and accessible.
MEpedia here Thread here
......................................................................

Coming Events

#MillionsMissing
Events all over the world planned for May 12th 2018
Information here

UK West Sussex - ME Awareness Conference with Dr Amolak Bansal - Saturday 12 May 2018 2pm

Webinar: Hot Areas in ME/CFS Research: 2018, Komaroff, 24 May 2018
Thread here
......................................................................

Action

Scotland Petition to the Scottish Parliament calling for a review of treatment guidelines, and funding for research.
Petition here Video here Thread here

UK Action for ME is looking for new trustees who have, or have had ME and have useful skills and experience. Applications close Friday 25th May 2018.
Details here Thread here

Fundraising

David Tuller Last day for donations Monday 30th April. Initial target of $75,000 has been reached. More money means he can do more.
Donations here Thread here

MEAction Network Crowdfunding for their work in 2018. Fundraising for the month of May, target $100,000.
Details and donations here Thread here
.......................................................................

 

[Trish]

For the week beginning 30th April see the May thread here.