NICE guidelines for chronic fatigue syndrome/ME to be updated

EDS UK recently submitted comments on the NICE guidelines for chronic fatigue syndrome/ME as NICE had decided there was no new evidence to warrant an update. As a result, the guidelines will be modified, which is great news.

Fundraiser of the Month – August 2017 – Philip Evans

Philip Evans and 6 of his friends climbed Mount Kilimanjaro in August to raise money and awareness for Ehlers-Danlos Syndrome. 

Thank you to everyone who took part and those who donated, we raised an incredible £2,472.42 

Accessing insurance with a genetic condition

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Genetic Alliance UK is working with the UK Forum for Genetics and Insurance to gather a better understanding of patients’ experiences, concerns and challenges when applying for insurance.

Management and wellbeing conference 2017

Our Management and Wellbeing Conference 2017, in collaboration with the HMSA, will take place on Saturday September 30th and Sunday October 1st at Chesford Grange Hotel, Warwick. The conference will provide members with practical health and wellbeing advice to manage their condition. Tickets are still available.

Fundraiser of the Month – July 2017 – Doug Stanway

Doug Stanway did the London to Paris Bike ride and fundraised an incredible £6,046! With more money still coming in! 

Transport for London launches new map for anxiety sufferers

TfL launch a new London Underground map highlighting where there are long stretches of tunnels. This came from feedback from customers suffering with anxiety and claustrophobia. More than half of the Tube network's 270 stations are actually above ground.

Fundraiser of the Month – June 2017 – Danny and James

Playing 100 holes of golf in one day at west Essex for Ehlers-Danlos Support UK because My wife and my daughter suffer with the condition

‘I had to crowdfund for my wheelchair so I could work as a doctor’

Junior doctor with Ehlers-Danlos syndrome crowdfunds for a £2000 wheelchair so she can continue her training. It helps her to work and play sport.

“Evidence building for EDS patients with CCI needs to start somewhere”

ITV News this week covered the story of EDS UK member Melanie Hartshorn after she had surgery for the complication cranio-cervical instability (CCI) in Barcelona. Melanie had to fundraise for the surgery after being denied it by the NHS.

Medically unexplained symptoms or EDS?

A letter by EDS UK's Primary Care Advisor Dr. Emma Reinhold was selected as Editor's Choice in The British Journal of General Practice this week. It highlighting the frequent diagnosis of 'medically unexplained symptoms' for people with EDS and related conditions. She called on GPs to educate themselves about how these conditions present.