Forward ME Minutes of the Meeting held in the House of […]

Dr Charles Shepherd summarises the key points to emerge from the NICE Stakeholders Engagement Workshop that took place on Tuesday 16th January 2018.

Unrest is being shown at an event for MSPs at the Scottish Parliament on 30th January 2018. If you live in Scotland, this is an incredible opportunity to make a concerted impact on decision makers.

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.

“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.”

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.

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”.

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.

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.