What a Weekend for Fab Friends of People with ME!

 

In the sizzling summer heat Olivia Robinson and Rachel Froebel did the AJ Bell Triathlon and Mike Harley ran the Sturminster Newton Half Marathon in training for the next of his 28 EU Marathons for Invest in ME Research.

All three are raising awareness and vital biomedical research funds for the charity because their friends have Myalgic Encephalomyelitis (ME).

What’s Up TV also kicked off their campaign to help raise awareness of ME.

 

AJ Bell London Triathlon 2018

 

Actress Olive Robinson (pictured left) fitting in her training and the triathlon in the middle of 16 shows in Newcastle, explained…

“M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide. One of those precious humans is my best friend of 25 years. A once, very active woman who now spends most of her days in a chair, bed or wheelchair. A reader, dog walker, runner, swimmer, weight lifter, shape-thrower (!) who’s bound by her body’s inability to produce energy. People have often asked me how I have been so diligent with my training and the answer is so simple…”

Read Olivia’s story

Rachel Froebel wrote…

“A very close friend of mine Sofija has been diagnosed with M.E. (Myalgic Encephaloyelitis, also known as Chronic Fatigue Syndrome). It is a severe neurological disease that leaves 25% of patients bed bound. There is currently little treatment available on the NHS and no cure. Many people don’t understand the impact this disease has on people’s lives so I want to contribute to supporting this vital cause and would hugely appreciate your contributions.”

Read Rachel’s story

 

Mike’s EU Marathons


By Michael Harley…

“Over 250,000 people in the UK suffer with the ME and that includes 25,000 children as well as one of my good friends who has suffered for almost 10 years with the illness. Watching him drift from year to year without improvement is extremely hard to watch, I want to try to do something to stop this. He’s not depressed or making it up, he’s one of the most popular and positive people I know. He’s ill. Invest In ME (www.investinme.org) are committed to raising funds and awareness to find the cause and cure and are a voluntarily run organisation doing some amazing work. They’re the only organisation really making progress in working with scientists and researchers to find cures and treatments. They will be opening a specialist centre of excellence for ME in 2018 where patients can get diagnosis and treatment and have even crowd-funded enough to hold their own clinical trials to find a cure/treatments. They are also funding the PhD’s of students investigating the cause and possible treatments of the disease.”

Read Mike’s story

 

What’s Up TV

 

On Saturday What’s Up TV opened their new series on Sky One (in which they hope to build awareness of ME) by featuring a performance of the powerful poem One Stupid Dot by Stacy Hart, who writes as Runnin On Empty (ROE) and makes music as the amazingly talented Mama Chill.

 

What a weekend – many thanks everyone supporting!

 

Runners wanted for Royal Parks Half Marathon October 2018

See more Fundraisers for Invest in ME Research 2018

What’s Up TV Wants Your Voice for ME

Message from Invest in ME Research

Invest in ME Research has been contacted by a researcher on a Sky One programme called What’s Up TV – an arts and culture magazine show with a reach of 100,000 households, and with a young demographic of 16-25.

Every series they pick a campaign, this is generally a cause they feel deserves more attention, and this series their campaign is M.E.

As part of this campaign they are producing an item on M.E.

This item will give an introduction about M.E. to viewers – how it affects patients, and the challenges the community currently faces.

As part of this they wish to feature the voices of people who live with the condition – this would entail people sending in short videos (no more than 20 seconds) of individuals speaking about the condition and their life to camera.

Therefore, we are sharing this request to our supporters.

If you are able to share a very short video talking about your experience – how having M.E. has changed your life, the medical treatment and support made available, and the level awareness that you believe M.E. has – then these videos will be cut together and used as part of the item.

The videos should be as high quality as possible, but a webcam recording would be fine. They can be sent to this email address, preferably in MP4 form – Robyn@whatsuptv.co.uk

To summarise
– the experience of anyone who lives with M.E.
– under 20 seconds
– they would need them by Tuesday 29th May
– email to Robyn@whatsuptv.co.uk

Web site is https://www.whatsuptv.co.uk/