A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken seriously by doctors.
Category Archives: News
“It has taken my life” – Sheringham woman speaks out about living with the debilitating disease ME | 06 January 2018
“I was fit, I went rambling and went to the gym,” she said. “But ME has taken my whole life and any fulfilment I might have had.”
This is an excellent feature article that focuses on the developing research situation in America, but also includes items relevant to the situation here in the UK.
Website survey: What do you think should be our research funding priorities for 2018? | 04 January 2018
We believe it is important to obtain regular feedback from people with M.E. as to what they regard as the most important priorities for UK research.
In October we reported how Phoebe Boag had reached out to locals to raise funds for an electric wheelchair, having been housebound for two years.
Buzzfeed News: A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience | 30 December 2017
A recent scientific trial has led to acrimonious debates over chronic fatigue syndrome, aka ME, and boosted interest in a secretive therapy that some call a “cult” and others call a “miracle”.
Belfast Newsletter: ‘We must keep believing science will catch up with ME. There is real hope’ | 22 December 2017
This is the fifth Christmas Paul will spend bedbound, away from his family, his partner Ciara and their son, Naoise.
He has borne this life changing illness with such strength and determination that all we can do is follow his lead and keep believing science will catch up with ME and that sufferers will finally get the care they deserve.
Last weekend, The Crooks, a lively saxophone quartet, played to the Christmas crowds at Borough Market in London, in aid of the ME Association.
Fundraising Feature: Baz Hornsby – ‘one of the ME Association’s most committed fundraising characters’ | 18 December 2017
Baz Hornsby’s flair for dreaming up new challenges, his passion for seeing them through, and his ingenuity when things don’t go quite right, are the stuff of legends.
“But what is so special about this is that it is about visibility. We set out to make a film about people who were disbelieved, rarely listened to, and often made invisible…
Thank you to everyone who has supported Helen’s challenge. You can still donate to her JustGiving page and help sustain our vital work in 2018.
M.E. Advocate, Shannon Tiday, named Young Hero of the Year in Plymouth Herald’s Awards Ceremony | 07 December 2017
Shannon Tiday hit the headlines back in September, following publication of the controversial SMILE trial that suggested M.E. could be treated by the Lightning Process. She took to Facebook to protest this association, and her poignant video went viral.
MEA Fundraising: ‘My dogs are what have held me together and kept me sane over these past years.’ | 06 December 2017
My family and friends all know how passionately I feel about supporting the ME Association. But it’s one thing to have passion and quite another to have the courage and confidence to stand up in public and be counted.
MEA Summary Review: Changes in ‘brain chemistry’ after exercise in CFS, Gulf War Illness and sedentary controls | 06 December 2017
We recently reported the results of research from Professor James Baraniuk and Assistant Professor Narayan Shivapurkar of Georgetown University in America. The research demonstrated differences in the levels of small…
Members of the Forward ME group met with Professor Mark Baker from NICE to discuss the recent decision to review and update the clinical guideline for ME/CFS. These are the minutes from that meeting, dated, 31 October 2017.
Why are we asking about migraine headaches in this month’s ME Association website survey? | 04 December 2017
Unusual headaches, including migraine, form part of ME/CFS diagnostic criteria. News last week revealed a significant breakthrough in the treatment of migraine, and we have decided to use this month’s website survey to look at migraine type headaches.
Shopping online this Christmas? Please consider easyfundraising for the ME Association | 01 December 2017
If you haven’t already done so, please sign up for easyfundraising before you go online and order all those Christmas presents, or book that holiday. It won’t cost you anything more, but it will raise precious funds for the ME Association!
Hilary is a born empathiser – always putting herself in your situation, thinking what you might need, and acting to help you as best she can. Which is exactly what you need for someone who runs a helpline.
The following article appeared in The Hippocratic Post, and was written by Rebecca Wallersteiner, on 25th November, 2017. It features comment from Sarah Staples, and Dr Charles Shepherd, from the ME Association.
ME Association Statement: Negative phase III clinical trial result from Norway for Rituximab in ME/CFS | 27 November 2017
“Despite the headline negative finding, we believe that this trial will still provide useful insights and contribute to a better understanding of M.E., and we also have the results from the Cyclophosphamide clinical trial to look forward to. We are very pleased that this knowledgeable, and valued, research team will continue with their work, trying to find answers to the M.E. puzzle.”