News in Brief - June 2018

This thread has a post for each week in June 2018. Scroll down to find the latest news.

 

Week beginning 4th June 2018

News

ME Action has announced the appointment of Jaime Seltzer (@JaimeS) as Director of Scientific and Medical Outreach.
Thread here

UK Parliament Carol Monaghan has secured a Westminster Hall Debate on ME on the 21st June. Urge your MP to attend.
#MEAction statement here Thread here

Scottish Parliament Petition committee takes evidence from ME patient Emma Shorter (@Emsho) and Prof @Chris Ponting.
Video here Thread here

The Canary ''There was a political tremor this week over one of the world’s most neglected diseases'' by Steve Topple. Covers this week's UK and Scottish Parliament news on ME/CFS.
Article here Thread here

Medical Journalists Association Award nomination Amy Maxman's excellent article ''A reboot for chronic fatigue syndrome research'', also titled ''The Invisible Disability'' published in January 2018 in Nature has been nominated in the Feature of the Year Specialist Category.
Nominations here Article here Thread here
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Articles, blogs, interviews

Trial by Error by David Tuller
''BMJ Still “Looking Into” Lightning Process Paper''
Article here Thread here
''My Letter to MP Monaghan About BMJ Studies''
Article here Thread here
''A Letter to Health Officials About BMJ’s Lax Editorial Standards''
Article here Thread here
''My Letter to the Science Media Centre about BMJ Study''
Article here Thread here

The ME Show Episode 5 now available. @Gary Burgess interviews Michelle and Nigel Henshaw about their Music4ME project which has collaborated with people around the world who have ME to showcase their music and poetry.
Podcast links here Thread here

Bateman Horne Center ''Public Awareness of ME/CFS : A Changing Story''
by Rachel Black. Includes a statement from Utah state governor formally recognising ME/CFS.
Article here Thread here

Solve ME/CFS Initiative ''Chief Scientific Officer, Dr. Sadie Whittaker, Answers Your Questions''
Article here Thread here

Occupy ME Blog by Jennie Spotila ''NIH Time Warp''.
Article here Thread here

On the Air Occupational Therapy podcast series. Two podcasts with Amy Mooney, OT and mother of daughter with ME.
Podcast part 1 here Podcast part 2 here Thread here

Norway Funds for ME research raised by director of recent TV documentary.
Thread here post #221.
Article in Journal of Norwegian Psychology Association 'Who is professional and who is amateur' by Ketil Jakobsen. Excellent article by psychologist criticising BPS approach with children.
Thread here post #222.
#Millions Missing Stavanger video now has English subtitles.
Video here Thread here post #192

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Research

PLOS One ''Circadian rhythm abnormalities and autonomic dysfunction in patients with CFS/ME'' by Cambras et al.
Small study showed some differences between pwme and healthy controls.
Paper here Thread here

Brain imaging and behaviour ''Cerebral blood flow and heart rate variability predict fatigue severity in patients with chronic fatigue syndrome'' by Staud et al.
Paper here Thread here

International Journal of Behavioural Medicine ''Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome'' by Jason et al.
Paper here Thread here
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Research news

UK PhD studentship led by Dr Neil Harrison to investigate the effects of inflammation on brain function in M.E./CFS. Part funded by AfME.
Article here Thread here

OMF Mark Davis Research Update. 8 minute video of Dr Mark Davis talking about his research on T-Cells in ME/CFS.
Video here Thread here

Australia Trial recruiting participants: ''Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies'' Dr Suzanne McDonald, Qld Australia
Thread here
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And the damage continues...

FITNET UK Keith Geraghty highlights on Twitter a video making unfounded claims about effectiveness of CBT/GET in children used to promote FITNET trial to professionals and recruit participants.
Video here Thread here
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Conference Reports

UK IiMER Journal of IiME Research, May 2018.
Includes updates on research being funded by IiMER and abstracts for the talks at the recent IiMER conference.
Journal here Thread here

Canada SMCI report of the first ever ME/CFS Collaborative Conference in Canada, May 2018.
Report here Thread here
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Coming event

USA Next CFSAC meeting (webinar) 20/21 June 2018. See thread for details of how to participate or submit comments.
Agenda here Thread here
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Fundraising

#ME Action has two fundraising campaigns:
Crowdfunding target $100,000 by the end of June for global costs of running and staffing #MEAction. $45,000 raised so far.
Information and donation here Thread here
UK target £55,000 to employ a UK organiser for advocacy, campaigns and medical outreach. £4,500 raised so far.
Information and donation here Thread here

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PDF version here

 

Week beginning 11th June 2018

News

UK Parliament Westminster Hall debate Thursday 21st June. See coming events below.

Trial by Error by David Tuller
''More Letters About BMJ’s Flawed Pediatric Studies''
Letters to the CMRC executive board, the Health Research Authority that oversees ethics committees, and Prof Bishop who gave an expert opinion in an SMC press release.
Article here Thread here

The ME Show Episode 6 now available. @Gary Burgess interviews @Trish about living with ME.
Podcast links here Thread here

UK CMRC DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 24 April 2018.
Minutes here Thread here

OMF World Tour - latest report from CEO Linda Tannenbaum's visit to Italy.
Thread here

Germany The German ME/CFS Association is placing monthly updates on line, now separated into Science Update and News Update.
Updates here Thread here

Canada Ontaria task force on environmental health report: ''Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS''
58 page document including list of recommendations.
Report here Canadian Family Physician article here Thread here

WHO Forum thread ''Updates on status of ICD-11 and changes to other classification and terminology systems'' including Bodily Distress Disorder.
Thread includes documents by Suzy Chapman and Mary Dimmock.
Thread here
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Biomedical Research News and discussion

The Journal of Nutritional Biochemistry Review article: 'Nutritional modulation of the intestinal microbiota: future opportunities for the prevention and treatment of neuroimmune and neuroinflammatory disease', by Lombardi et al.
Article here Thread here

ME Research Review ''Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS'' Guest blog by Professor @Chris Ponting and colleagues.
Article here Thread here

SMCI Research update - Two studies funded in 2016 are preparing papers for publication.
Article here Thread here

OMF ''Up Close with Robert Phair, PhD'' explains how he became involved in ME/CFS research and his work on the Metabolic Trap hypothesis.
Article here Thread here

JAX ME/CFS Center: Scientist Spotlight: Alison Motsinger-Reif, Ph.D., an Associate Professor in Statistics at North Carolina State University, and the Biostatistics Lead for the JAX ME/CFS CRC.
Article here Thread here

MERUK announce funding for a study: ''Tracking peripheral immune cell infiltration of the brain in ME'' by Prof. Jarred Younger, Alabama.
Article here Thread here

Norway Discussion of use of Rituximab with 250 ME patients outside a clinical trial by a clinic in Norway suggests it has not been effective.
Thread here post #238.
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Psychosocial treatments - IAPT

UK IAPT The Improving Access to Psychological Therapies program is being rolled out across the UK and includes MUS (Medically Unexplained Symptoms) in which they include CFS. The 'evidence' is weak to non-existent, and includes PACE.

Journal of Health Psychology
''Improving Access to Psychological Therapies (IAPT) - The Need for Radical Reform'' February 2018, by Michael J. Scott
Article here Thread here
''Transforming Improving Access to Psychological Therapies'' June 2018, by Michael J. Scott.
Article here Thread here

Trial By Error: ''A Curriculum for Treating CFS with CBT'' by David Tuller.
Article here Thread here

The Canary: ''The DWP is now co-working with the NHS. We should all be very worried'' by Steve Topple. Work seen as a health outcome, linking employment goals in with IAPT services.
Article here Thread here
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Psychosocial research

BJ Psych Advances ''Medically unexplained syndromes: irritable bowel syndrome, fibromyalgia and chronic fatigue'' by Jason Luty.
Article here Thread here

Journal of Psychosomatic Research ''The associated features of multiple somatic symptom complexes'' by Creed et al.
Includes 'chronic fatigue'. Not a recommendation.
Article here Thread here
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Useful Resources

#MEAction Guide for Carers of People with ME
Guide here Brochure here (short version) Thread here
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Conference Reports

IiMER Conference 2018. ME Association report by Dr Charles Shepherd.
Report here Thread here

Australasia Royal Australasian College of Physicians Annual Congress, May 2018 included ''Medically Unexplained Symptoms - Is it all in your head''. 3 speakers took BPS approach, Dr Ros Vallings, NZ ME/CFS expert gave good information.
Links to powerpoint PDF's here Thread here
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Coming Events

UK Parliament Westminster Hall Debate on ME/CFS Research and Treatment, Thursday June 21st, 1.30 - 4.30pm. Urge your MP to attend.
Debate live video link here Thread here
#MEAction Briefing Paper has been updated.
Briefing paper here Thread here
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Fundraising

#MEAction A reminder of the two fundraisers for worldwide and UK work. See last week's news on this thread.
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PDF version here
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Edited to correct Germany item.

 

Week beginning 18th June 2018

News

UK Parliament Westminster Hall 3 hour debate ''ME: Treatment and Research'' held Thursday 21st June 2018 led by Carol Monaghan, MP. Speeches highlighted problems with PACE, GET, CBT, NICE guidelines, lack of recognition and appropriate care, mistreatment of children and lack of biomedical research funding. Minister responding described the purpose of the debate as 'awareness raising' and made no commitment to change.
Watch the debate here Debate also on YouTube here
Full Hansard transcript of the debate here Thread here
#MEAction report here MEA press release here

House Magazine ''Carol Monaghan: We must change perceptions of the debilitating illness ME''. Short article highlighting the problems of perception, PACE, and lack of biomedical research and treatment.
Article here Thread here

Media articles on the debate
Thread here

Action following the debate
Thread here
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Denmark Recommendations on 'Funktionelle lidelser' (Functional disorders) were released Monday 18th June. Worse than expected for ME/CFS - still recommends GET.
Thread here

UK NICE The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018.
NICE information here Draft scope here Thread here
NICE are now looking for lay members to join the ME/ CFS guideline committee
NICE information here Thread here

UK ME Association to fund six student bursaries for 2018 CMRC research conference.
Information here Thread here

UK Invest in ME Research ''Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018''. 25 page pdf document.
Article here Status Document here Thread here

UK Action for ME have updated their website treatment pages. We are underwhelmed.
AfME pages here Thread here

USA CFSAC meeting (webinar) was held on 20/21 June.
Thread here

USA The Columbia University Center for Infection and Immunity is seeking applicants for the Community Advisory Committee for their Collaborative Research Center – The Center for Solutions for ME/CFS.
Information here Thread here

EUROMENE and COST (European Cooperation in Science and Technology) Joint publication manuscript on ME/CFS European practices in diagnosis and treatment based on survey data.
Highlights poor, inappropriate or non-existent guidelines across Europe.
Document here Thread here
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Podcasts, videos, articles, blogs

Trial By Error by David Tuller
''A Letter to NICE About the IAPT Program''
Article here Thread here
''Sir Simon Scores an Own Goal''
Article here Thread here
''An Open Letter to The Lancet, Two Years On''
Letter with 94 signatories sent by Prof. Racaniello to Richard Horton, editor of The Lancet about the PACE trial paper he published in 2011. Letter calls for independent data re-analysis.
Article here Thread here

Occupy ME blog by Jennie Spotila
''Public Comment on Engaging People with ME. I delivered these comments via telephone today at the CFS Advisory Committee meeting''.
Article here Thread here
''NIH Forms New Working Group on ME/CFS''
At the CFS Advisory Committee meeting on June 20, 2018, Dr. Vicky Whittemore said the Working Group would be looking at the research needs, including whether targeted RFAs are needed.
Article here Thread here

PACE trial critique video First of 3 short videos by Graham McPhee (@Graham) demonstrates the SF-36 Physical Functioning Questionnaire and problems that arise from its use as an outcome measure in clinical trials for ME/CFS such as the PACE trial.
Video here Thread here

Sweden News Magazine Fokus included a well researched article about ME and the situation in Sweden.
Article here Google English translation here Thread here post #269

The Canary articles by Steve Topple.
''Esther McVey and her department are now totally out of control''.
UK government increases pressure on sick people to return to work and to deny them benefits. Mentions PACE trial.
Article here Thread here
''A cross-party debate has offered a ray of hope for the ‘millions missing’''
Article here Thread here

The ME Show Episode 7 is now available. @Gary Burgess interviews Emma Donohoe who was diagnosed with M.E. at the age of 19. She recently presented a documentary for BBC Newsbeat called ‘ME and me’.
Podcast links here Thread here

Australia - #MEAction article by Sasha Nimmo: Mason Foundation explores funding ME/CFS Biobank''
Article here Thread here

Video interview "From Fit Nurse To ME Warrior With Ashanti Daniel" by Valentine Ewudo.
Video here Thread here

Medium ''How to (almost) disappear completely'' by Joseph Stashko.
Good article by journalist with ME in the UK.
Article here Thread here
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Biomedical research

Fatigue, Biomedicine, Health & Behavior ''Liver volume is lower and associates with resting and dynamic blood pressure variability in chronic fatigue syndrome'' by Newton et al.
Paper here Thread here
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Biomedical research news

Jax ME/CFS Center ''JAXtaposition: Decoding Chronic Illness''
Article about a seminar talk given on June 14 by Derya Unutmaz for the Jackson Laboratory’s new speaker series, JAXtaposition: Cures Can’t Wait.
Article here Thread here
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Psychosocial Research

Journal of Disability and Rehabilitation Review Article: ''ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter'' by Keith Geraghty & Charlotte Blease.
Article here Thread here

European Journal of Applied Physiology ''Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with CFS/ME'' by Broadbent et al.
Article here Thread here
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Coming Events

Solve ME/CFS Initiative Webinar "Crossroad of the immune response and the microbiome: Impact on ME/CFS" with Derya Unutmaz, rescheduled to Thursday July 19, 10am PST / 1pm EST
Register for livestream here Thread here
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PDF version here
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