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/

Happy Birthday Paul Kayes!

Let’s celebrate to kick off ME Awareness Month May 2018!

Fab friends of Paul Kayes have been busy organising an online surprise for his birthday today. Paul is co-founder of the Let’s Do It for ME campaign to support the charity Invest in ME Research, and founding admin of The M.E Chat Room Facebook group for Myalgic Encephalomyelitis, among the many ways he shows ceaseless kindness, generosity, and good humour to people across the globe.

Message from Paul’s friends…

Paul as it’s your birthday we all felt that the best way to celebrate was to raise funds for our favourite charity.

Paul you are a great friend you have supported so many of us through good times and bad times and we are honoured to call you a friend so here’s our way of celebrating your special day Happy Birthday 🎁

Many thanks to Nadine Pennington for setting this up and coming up with such a fantastic idea. justgiving.com/fundraising/paulkbirthday

Ways you can help celebrate Paul’s birthday…

🎁 Donate to the fundraising page created by Michelle, Makayla and Sophie: justgiving.com/fundraising/paulkbirthday
(JustGiving accepts any amount from £2 and now has an option to add 5% of your donation to cover their platform fees.)

🎁 Leave a message on the Kudoboard created by Alison: kudoboard.com/boards/j2Tfv2Ks
(It’s easy to register/sign in, click ‘add kudo/image/video’ to type your message, upload image/video or choose from the Kudoboard picture/GIF library.)

🎁 Post a ‘Paul joke’ online to pay him back for all the giggles and groans!

🎁 Join Jen Govey later today in a special birthday surprise for Paul at Dress for ME on Facebook: facebook.com/DressForMEchallenge/

(Update: Jen’s video is here: facebook.com/DressForMEchallenge/videos/1634459776675575/
and she tweeted)…

https://twitter.com/DressFor_ME/status/991429441397149696

Happy Birthday Paul Kayes!

Happy ME Awareness Month everyone!

Thank you for all your support!

Music video created by songstress Caged Bird showing why Paul is The Top…

In Loving Memory of Robert Courtney (Bob)

“To raise money for Rob’s chosen charity because he fought and lost a 13 year battle with M.E.” justgiving.com/fundraising/bobbobme

Robert Courtney (1969 – 2018)

We were devastated to hear of the lovely Bob’s passing and we extend our deepest sympathy to his family and friends and all whose lives he touched.

Bob was a long term supporter of Invest in ME Research and also kindly supported our patient-driven campaign to help raise awareness of the charity’s work to establish a UK Centre of Excellence for ME and to help raise funds for their programme of biomedical research to establish tests and treatments for Myalgic Encephalomyelitis (ME).

Bob’s sister Vicki Clark has kindly created a fundraising page for Invest in ME Research as one of his chosen charities: www.justgiving.com/fundraising/bobbobme

This appeal is to raise funds for the charity UK Invest in ME serving patients who suffer from M.E. (Myalgic Encephalomyelitis)

The appeal is in loving memory of Robert Courtney, an internationally recognised patient campaigner, dedicated to his family and friends. Also known as ‘Bob’, ‘BobBob’, ‘Rob’ and ‘Uncle Bobble’.

Robert was tragically taken from us on 7th March 2018, having lost his battle with M.E.and having struggled against several serious related conditions. M.E. is an illness that is still under-researched, has no treatment or cure and which influential sections of the medical profession still frame only as a state of mind, rejecting physical causes.

Robert touched the lives of so many over his 48 years with kindness and love, whether among his family and friends or his dedication to the quest for a cure ME, a debilitating condition he lived with for the last 13 years of his life and which left him bed-bound in his final years.

Read more, share or donate here: justgiving.com/fundraising/bobbobme

Our thanks to all for your support.

A Study Update by Katharine Seton

PhD student Katharine Seton has kindly provided an update via the Invest in ME Research Blog, on the study being undertaken at Quadram Institute, “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. You can find it at this link where you are also welcome to comment or ask any questions: http://www.investinme.org/ce-blog-1802-01.shtml

Best wishes everyone and thank you for your support!

Kate’s Christmas for Charity

Give a gift of hope this Christmas with a donation to Invest in ME Research

By Kate Chaplin

Thanks for taking the time to visit my JustGiving page.

This year instead of a present for Christmas I would love nothing more than a donation to “Invest In ME Research”.

Invest in ME (IiME) is a charity that is looking to create awareness and research treatments for ME/Chronic Fatigue Syndrome, an illness often dismissed.
http://www.investinme.org

I have suffered from ME/CFS for many years, through ups and downs, never knowing how I will be from day to day.
The last 2 years have been my worst relapse since I was first ill, and life has stopped again.

But I live in hope of better understanding and awareness, diagnostic tests, treatment, and, of course, a cure.

So please, whatever you can afford, no matter how small, please make a donation today.

Much Love – Kate x

P.s. The photo was taken in better times.

Kate’s Christmas: www.justgiving.com/fundraising/kate-chaplin

Thank you for your support!