News in Brief - May 2018

This thread contains a News in Brief post for each week in May 2018. Scroll down to find the latest week's news.

 

Week beginning 30th April 2018

News

Nederlands Dans Theater short video dedicated ME-patients everywhere. NDT supports Anil van der Zee (@Grigor), former professional ballet dancer with severe ME, in his mission to spread awareness of ME through performance art.
Anil's blog here Thread here

Norway Forskning.no (website about research for general audience) - 'ME-sick psychologist: I'm not the type to get ME, I thought' - article and interview with psychologist who has ME.
Thread here

Canada First ME/CFS Canadian Collaborative Conference was held 3rd to 5th May.
Thread here

In the media

UK BBC iPlayer TV program 'ME and me' available from Tuesday 8th May, featuring the UK ME Biobank team and severe ME sufferers, presented by Emma Donohoe who has ME.
BBC link here Thread here

The Mighty ''ME/CFS Patients and Allies Are Rallying Worldwide to Demand Better Treatment'' by Erin Migdol.
Excellent article describing #MillionsMissing events, aims and the reasons behind the need for awareness.
Article here Thread here

The Irish News: ''Hope for ME: Co Down woman's campaign for the thousands living with chronic fatigue syndrome''
Article here Thread here
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Definition of ME/CFS

Trial by Error ''A Q-and-A with Leonard Jason, on Case Definition'' by David Tuller.
Article here Thread here
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Biomedical research

Neuroimage: Clinical ''Brain function characteristics of chronic fatigue syndrome: A task fMRI study'' by Shan et al.
''The results suggest the brain responds differently to a cognitive challenge in patients with CFS, with recruitment of wider regions to compensate for lower information capacity.''
Paper here Thread here
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Research funding news

Canada Proposal CRC to join forces with US NIH's 3 CRC's to research ME
Thread here

SMCI announces RFA for Ramsay Award medical research program. Applications for research funding close June 30th 2018.
Details here Thread here
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MUS commentary

American Journal of Bioethics: ''Why Bioethics Should Be Concerned With Medically Unexplained Symptoms'' by D. O'Leary.
Mixed responses in thread discussion.
Article here Thread here
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Action

USA CDC stakeholder call 10 May 2018 3-4 pm (ET)
Thread here

Fundraising

ME Action Fundraising through May for their work for the next year. Target $100,000.
Donate here Thread here

USA Donate up to 5% of your grocery shopping to ME/CFS nonprofits at no cost to you.
Thread here

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Advocacy

WHO classifications Updates on status of ICD-11 and changes to other classification and terminology systems by Suzy Chapman (Dx Revision Watch) and Mary Dimmock.
Thread here

Jax Labs ME/CFS blog: Advocate spotlight interview with Mary Dimmock.
Article here Thread here

UK Action for ME and North Bristol NHS Trust have produced new Self Advocacy support material.
Some parts may be useful but it is heavily criticised in our thread discussion.
AfME material here Thread here

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Coming events:

12th May 2018 Worldwide events for ME Awareness Day
#MillionsMissing events MEAction information
There are many threads on the forum about events. Here are some:
Germany thread ..... Holland 10th May
UK thread .... Edinburgh event .... Choir in Cornwall .... London event
USA thread
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Week beginning 7th May 2018

Headline News

ME Awareness Day 12th May
This brief news bulletin cannot hope to cover all the activities that happened in the run up to 12th May and on the day, including the hundred cities where #MillionsMissing events were held. Apologies to those whose efforts are not listed - all your efforts are valued.
MEAction information here ... 12th May thread here
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News

Sweden The Swedish Government has instructed the National Board of Health and Welfare to review the level of knowledge about ME and care for pwME and report by the end of the year.
Thread here

Finland Draft report on planned guidelines based on Fink's functional disorders.
Thread here

Norway Two allocations from The Norwegian ME Association to research - for biobank study related to Fluge and Mella's cyclophosphamide trial, and prospective study on ME in children.
Thread here

Australia ME Australia article ''Boost for people with ME and chronic fatigue syndrome thanks to Parliament'' by Sasha Nimmo
Article here Thread here

Trial by Error ''My visits with Alem Matthees'' by David Tuller.
Article here Thread here
''May 12th-International ME Awareness Day'' by David Tuller.
Article here Thread here

The Body (HIV/AIDS website) Feature Article: ''Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing''
Article here Thread here

USA CDC Features: "May 12 is ME/CFS and Fibromyalgia International Awareness Day".
Article here Thread here

The ME Show podcast series of interviews by @Gary Burgess in association with the MEA.
Episode 1 now available featuring Jen Brea (@JenB) and Robert Saunders (@Robert 1973) with his song. Well worth a listen.
MEA article with podcast links here Thread here

The International Alliance for ME (IAME) based in Geneva set up recently by Action for ME (UK). Initial actions #MillionsMissing demonstration in Geneva and letter to the WHO.
Article here Letter here Thread here (from post #40)
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In the media

UK BBC Newsbeat program 'ME and me' now available.
iPlayer link here YouTube link here Thread here
Newsbeat article ''Chronic fatigue syndrome treatment 'should be withdrawn'''. accompanies and links to the TV program.
Article here Thread here
Newsbeat article ''ME protesters gather in London''.
Article here

Guardian Australia ''ME/Chronic Fatigue Syndrome Opinion: To the #MillionsMissing with ME/CFS, something remarkable is happening'' by Scott Ludlam, former Green Party politician. Excellent article.
Article here Thread here

Sweden Three articles in Aftonbladet, one of Sweden's largest newspapers about a pwME, a government minister and MillionsMissing.
Thread here see posts 137 and 140 for links to English translation.

Readers' Digest ''50 Fitness Myths That Can Seriously Damage Your Health'' includes "Myth: Increased exercise will help chronic fatigue syndrome" points out CDC changed guidance. ''even light exercise can make this condition much worse''.
Article here Thread here

UK Huff Post ''Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be'' Sophie Cooklynn, severe ME sufferer, tells her story.
Article here Thread here

UK Scotland STV News: '''Urgent change' needed to improve lives of ME sufferers.''
Link here Thread here
BBC Scotland: ''Belle and Sebastian singer says ME turned his life upside down''.
Link here Thread here

The Canary Excellent articles by Steve Topple:
''On Saturday ‘millions’ of ‘missing’ people will reappear for the day'' by Steve Topple. Excellent article.
Article here Thread here
''An MP is calling for a debate into one of the ‘biggest medical scandals’ of the 21st century''
Article here Thread here
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One'' Interviews @Robert 1973 about his song and ME politics.
Article here Thread here

Marie Claire ''The important reason why people are leaving shoes around cities'' by Je Banach. Subtitled: ''The #MillionsMissing campaign wants to give a voice to the thirty million people worldwide who suffer from ME''. Good article.
Article here Thread here

UK Metro article and two radio interviews about the IiMER funded successful trial of robots in the classroom to enable children with ME to 'attend' school from home.
Article here Thread here

UK - A sample of articles in local newspapers:
The Bristol Cable: #MillionsMissing: the campaign for ME equality.
Article here Thread here
Loughborough Echo: ''MP Nicky Morgan to raise awareness of ME illness''.
Article here Thread here
Eastern Daily Press ''ME Awareness Week: ‘Missing behind closed curtains for 12 years’ – Woman describes living with M.E.''
Article here Thread here
Leamington Observer ''ME sufferers speak out about their battle with the 'invisible illness'''
Article here Thread here
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Biomedical Research

Frontiers in Immunology ''Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)'' by Rivas et al.
Paper here Thread here

Mediators of Inflammation preprint ''Reduction of glucocorticoid receptor function in chronic fatigue syndrome'' by Watson, Newton et al.
Paper pdf here Thread here

Chicago Reader Article: ''The hidden ME too: 100,000 people in Illinois could suffer from debilitating disease'' by Megan Doherty
Discusses qEEG Brain Research at DePaul University (Jason et al.) linking brain activity and cognitive dysfunction.
Article here Thread here
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Psychosocial Research

Journal of Community Psychology ''Effects of unsupportive social interactions, stigma, and symptoms on patients with ME and CFS'' by McManimen, Jason, et al.
Good article.
Article here Thread here

BMJ Journal of Neurology, Neurosurgery and Psychiatry ''A unifying theory for cognitive abnormalities in functional neurological disorders'' , Mark J Edwards et al.
Takes a range of small studies on FND, CFS and FM, and tries to form a theory from limited and contradictory data. Not a recommendation.
Paper here Thread here

Scandinavian Journal of Psychology ''Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls'' by Bileviciute‐Ljungar et al
Paper here Thread here
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PACE trial

''PACE trial: Whatever happened to Actigraphy?'' Blog article by @Lucibee.
Blog here Thread here

British Journal of Sports Medicine invites (via Twitter) submissions addressing PACE limitations.
Thread here
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Useful Resources

Information for professionals dealing with children with ME in education
''When children don't get well'' by Claudia Gillberg, co-author on Utting-Wolff Spouts blog introducing:
''TIME FOR A PROFESSIONAL RETHINK ON ME : Your heart is as important as your head'' by Jane Colby, Executive Director of Tymes Trust.
Articles here Thread here
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Some blog posts

''Trust in the context of ME'' by Sally Burch (@Keela Too)
Article here Thread here

''Don't call the doctor'' describes an experience of going to A&E.
Article here Thread here

''One Dance: Millions Missing 2018'' by Jennie Spotila
Article here Thread here

''How many times must a story be told...'' by Spoonseeker.
Article here Thread here
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Advocacy Action

Worldwide Action: Sign #MEAction’s Letter to Francis Collins by May 16th
MEAction information here Thread here [Edit - corrected link to thread]

Australia The #MEAction Network Australia. If you’ve been harmed by GET, write a letter to one of the campaign targets (RACGP President or Chief Medical Officer) or your local MP to explain the impact on you of GET and to ask for change.
Thread here

UK New Early Day Motion Launched by Carol Monaghan MP. E-mail your MP to ask them to sign it to give it a chance of getting a parliamentary debate.
MEA article here Thread here
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Music

Music4ME Album release 12 MAY. Original songs and poetry composed and performed by people with M.E and their carers or family about their experiences of living with M.E. Fundraiser for ME research and education.
Website here Thread here

Songs of Silence Album by Anette Gilje, Norwegian ME sufferer and advocate. Now released in English.
Album here Thread here
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Coming Events

USA Meeting of the US CFS Advisory Committee June 20th and 21st 2018
Thread here
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Week beginning 14th May 2018

News

USA Senator Ed Markey introduces resolution to encourage immediate government response for ME/CFS. SMCI report on Advocacy Day in Washington.
Thread here

UK The inquest into the tragic death of Merryn Crofts has ruled that the cause of death was ME. The thread includes links to several newspaper articles.
MEA article here Thread here
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In the media

Denmark - Manifest to health authorities from 85 ME-patients printed in a Danish newspaper.
Thread here

UK Liverpool Echo ''Hairdresser who loved life says he feared he would die after developing 'tightrope' condition'' good article about severe ME sufferer who was wrongly advised and misdiagnosed for years. MEA quoted.
Article here Thread here

New Zealand - Stuff News Website - ''I'm not looking for pity, just a cure'' by Melissa Bailey.
Article here Thread here

USA - Bustle (Online Womens' Magazine) - ''What Is Myalgic Encephalomyelitis? The “Millions Missing” Hashtag Is Raising Awareness Of The Chronic Illness Through Social Media'' by James Loke Hale.
Article here Thread here

The Canary More excellent articles this week from Steve Topple:
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part Two'' continues last week's article, with commentary on PACE, the DWP, vested interests and the current campaign.
Article here Thread here
''I was humbled by the ‘millions missing’ yesterday. Now it’s time for unrest.'' Steve Topple writes of his experience of going to London #MillionsMissing, and the injustice of how pwme are treated.
Article here Thread here
''An ex-professional ballet dancer is using his art for the ‘millions missing’''
A moving interview with Anil van der Zee (@Grigor) about his severe ME and his #Art2CureME campaign.
Article here Thread here

Australia Canberra Times: '''I'm at my wit's end': why chronic fatigue patients are fed up'' Good article about 2 pwme, problems with benefits, GET and getting good medical help.
Article here Thread here
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Biomedical research

Clinical Infectious Diseases ''C-Reactive Protein Response in Patients With Post-Treatment Lyme Disease Symptoms Versus Those With ME/CFS'' by Uhde et al.
Post-Lyme had higher CRP than controls in previous study. This study showed ME/CFS patients' CRP was not significantly higher than controls.
Paper here Thread here

Sleep Medicine Reviews ''The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders'' by Carvalho et al.
Focuses on CFS, bipolar disorder and MS. Speculates that systemic inflammation may affect some cells in brain regions that affect sleep.
Article here Thread here
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Biomedical Research News

ME Association Ramsay Research Fund invests in new study with ME/CFS Biobank to examine dysfunctional immune system and energy metabolism. Also involves collaboration with UCL and Melbourne teams.
MEA article here Thread here

MERUK (ME Research UK) Latest issue of Breakthrough Magazine available as free pdf - included articles on biomedical research they fund and other ME news.
Breakthrough pdf here Thread here

Solve Latest Solve ME/CFS Chronicle available free online. News of Solve people and projects - research and advocacy.
Chronicle pdf here Thread here
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Psychosocial research

Journal of Sleep Research ''Poor self‐reported sleep quality and health‐related quality of life'' by Castro-Marrero et al.
Paper here Thread here
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Psychosocial research commentary

Australia: Trial by Error: ''Australia’s Online GET/CBT Education Program'' by David Tuller.
Details the flaws in a protocol for a trial of a program of doctor and therapist education in using GET/CBT for ME/CFS.
Article here Thread here
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Diagnosis

Diagnostics Commentary: ''Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn'' by Frank Twisk.
Defines ME and CFS as different diseases, and concludes the adoption of ME/CFS (SEID) by the Dutch Council is detrimental to research and patient care.
Article here Thread here
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Interviews

Jackson Labs ME/CFS blog ''Patient Advocate Interview - Jen Brea''.
Article here Thread here

The ME Show Episode 2 - @Gary Burgess interviews Dr Charles Shepherd, Medical Adviser to the MEA. Excellent interview covering his own experience of ME, his career, the latest research and the NICE guidelines.
Audio links here Thread here

Just Talking Podcast with Ryan Prior: Discusses CNN, ME/CFS and Millions Missing.
Podcast here Thread here

ME Australia: ''Meet the Scientists: Fane Mensah''. UCL researcher interviewed by Sasha Nimmo.
Article here Thread here
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The psychobabblers try to hijack our message:

BACME (UK organisation of therapists who use BPS approach) ''Message from the Chair BACME on ME Awareness Month'' Note their odd choice of patient support groups listed.
Article here Thread here

UK NIHR (National Institute of Health Research) blog. ''Worries that keep you awake at night'' by Esther Crawley, whose research is mainly funded by NIHR, boasts about herself and her work, including inaccurate statistics.
Article here Thread here
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Action

Scotland: ‘ME Awareness Week’ New Motion from Gail Ross, MSP, in the Scottish Parliament. Write to your MSP asking them to support it.
MEA article here Thread here

#MEAction: Four things you can do to advance the fight for health equality.
Article here Thread here

UK TV program wants short video clips (under 20 sec) of pwme talking about their illness and how it affects them. By 29th May.
Article here Thread here
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Coming Events

UK IiMER International Research Conference 1st June
(Also Biomedical Research Colloquium for researchers only 30th - 31st May).
Details here Thread here
Colloquium details here

UK CMRC Conference 19th - 20th September. Registration now open.
Details here Thread here
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