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.

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.

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.

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.

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.

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.

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.

“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.”

If you you’re looking for that unique festive gift for someone you hold dear, do take a look at the Marketplace4ME,  and contact the makers direct. If they don’t happen to provide contact details, then contact Helen, and she can put you in touch with them.

Forward ME members met with Dr Max Davie from the Royal College of Paediatricians to discuss matters relating to children and M.E. They also discussed developments at NICE and with research incl. the controversial SMILE trial.

A few months ago, we asked our Facebook community what difference having a pet in their lives made to their abilities to cope with M.E.

Anna Wood reviews some of the digital tools that have allowed her to work as an academic while being 90% housebound by M.E.

Neo’s first official public appearance for the ME Association, with be at the Santa Dash in Glasgow on 10th December. Please support his challenge.

The Royal Society hosted a two-day conference ‘understanding the neurobiology of fatigue’. One of the distinguished researchers was Professor Julia Newton from the University of Newcastle, who spoke about the role of autonomic dysfunction and ME/CFS.