Buzz – January 2017: We scoured the Internet to bring you a list of news articles, blogs and research publications we think you’ll find interesting for this month’s What’s the Buzz post.
On January 27th, the NIH made two big announcements of federal funding for ME/CFS collaborative research centers and Data Management and Coordinating Centers. While some feel the funding falls short (read more here), others see this as clear improvement, noting that the doubling of funding for a disease over one year and getting an RFA for a disease like ME/CFS is rare, and in itself constitutes a considerable achievement. READ MORE
‘Unrest’, Jen Brea’s documentary film (formerly known as Canary In A CoalMine), documents lives of ME patients – read this review of the premiere and our related post. In addition to premiering, UNREST, at the Sundance Film Festival Jen Brea also delivered a riveting and wildly successful TED Talk about ME.
[embedyt] https://www.youtube.com/watch?v=Fb3yp4uJhq0[/embedyt]
Read Cort Johnson’s review of the talk on the HealthRising Forum HERE
On January 12-13, 2017, the CFS Advisory Committee (CFSAC) held its first meeting of the year. The agenda can be found HERE and eventually the minutes and recording links will be made available at the same link.
Several patient/stakeholder testimonies have been posted on MEAction and can be accessed HERE, HERE and HERE
New Free Game Illustrates Life with ME/CFS – A group of game design students at Media Design School have come up with a game that could help players to understand what it can be like to live with ME/CFS.
Players have to help Robin, who suffers from Chronic Fatigue Syndrome, to get through a long weekend at home. Players discover that Robin can only carry out a limited number of activities in a day, and must decide which activities she will carry out.
There are three possible outcomes to the game, and the developers emphasize that there is no ‘perfect ending’, which may help players to develop a better awareness of life for sufferers of ME/CFS. The game is free to download for the PC or Mac, from https://gamejolt.com/games/robin/173478#close or go to GameJolt.com.
A recent study of ME/CFS in adolescents concludes that the prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.
https://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198.full
An advocate and campaigner living with ME explains why she opposes Bristol University’s trials on children with the condition. The trial, attempting to treat child ME sufferers, used a specific form of cognitive behavior therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness. However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. READ MORE
Could Oxford become the new centre of excellence for biomedical research into ME/CFS in the UK? The research will involve blood samples from the ME/CFS Biobank to look for possible biomarkers and markers of disease activity in people with severe ME/CFS. READ the POST
Currently featured articles at The CFIDS & Fibromyalgia Self-Help Program website www.cfidsselfhelp.org: 1) “The Double Challenge Of Stress In CFS/FM” Why stress is doubly taxing if you have CFS or FM and two approaches to managing it. AND 2) “How I Use Pacing to Manage CFS” Bianca Veness’s seven pacing strategies.
28 People With Chronic Illness Explain What ‘Brain Fog’ Feels Like to Them in this recent post on The Mighty
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.