July Updates

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Hello everyone! What busy bees you’ve been through July as we hit five years since the launch of the Let’s Do It for campaign in support of the work by UK charity Invest in ME Research to establish a Centre of Excellence for ME (Myalgic Encephalomyelitis) including biomedical research for tests and treatments, patient care and medical education for healthcare professionals.

Jay – aka The ME/CFS Ghost – kindly created one of her excellent and informative videos to mark the 5th anniversary of Let’s Do It for ME. Huge thanks to everyone who’s been with us so far and if you are new to our site, then welcome aboard on the journey to a better future for people with ME!

The multi-talented Jon Campling, train-stopping Death Eater in Harry Potter and the Deathly Hallows, is also King Regis in Kingsglaive: Final Fantasy XV, released in July, with further releases in August and September. Jon kindly collected more donations in his charity box for Invest in ME at Nerdageddon Bitterne Comic-Con in Southampton (dressed by popular demand in a fluffy green onesie) & at a sketching event in Streatham, London. See photos here.

Also held in Southampton in July, an art exhibition including the work of German artist Wolfgang Stiller, whose striking images feature by kind permission in the Invest in ME Research Matchstick Campaign.

Jo H-S reported another fine example of the kindness of strangers. She said that, whilst showing his car at a classic car show, which got loads of attention, Jeremy “a gentleman and a hero”, also allowed folks to sit in it and have a photo taken in return for a £1 donation to her charity box for Invest in ME.

Paul Kayes was pleased to say that the several sweepstakes that were run during the Euros and Wimbledon raised a fantastic £570, “a big thank you to Emma Goodson and all those who took part and put the fun into fundraising and to the very generous people who donated their winnings”.

Amanda Kayes umpired a record-breaking 12 hour tennis match! With support from friends and family, Amanda and husband Richard Pughe have raised well over their £10,000 fundraising target for Invest in ME Research this year, including their Kilimanjaro Climb, with two more events still to go.

Amanda’s long stint in the pouring rain was noticed by Invest in ME Research colleagues at the European Federation of Neurological Associations, raising awareness of brain disorders with their Under the Umbrella Campaign on World Brain Day on 22nd July. ME is classified by the World Health Organisation as a neurological disorder (WHO ICD-10 G93.3). Joy Harrison, with Snugzie Bear, and the Monkman family joined European ME Alliance representative Nancy Hoylandt in raising awareness of ME Under the Umbrella on World Brain Day.

Mike Harley announced he is fitting in an extra marathon this year – the 8th of 28 that he plans to run in EU countries to raise awareness as well as donations to Invest in ME Research Funds. Mike will be running the Maraton Solidarności in Poland in August and the Brussels Marathon in Belgium on October 2nd. Click here to read his June/July Update.

Stu Nimmo has been training for the Salford 10K and Manchester Half Marathon.  His sister-in-law will be baking cupcakes as well to raise money for Invest in ME Research. Big thanks for donations to justgiving.com/isupportmeresearch

Alison Orr had another golden ticket up for grabs in July at Cards 4 Invest in ME.

Lynne Allan continued to spread the love with her jewellery at ME 2 U Dezignz.

Sophie Tennent wrote, “I’ve set up a page where I’m selling some home made M.E awareness jewellery and other jewellery bits that have been donated. All money is going to Invest in M.E charity 💙 Please like & share.”

Caged Bird produced two versions of a new poster, with ‘M’ and ‘E’ in red lettering to signify danger and urgency, and in blue as the colour for ME Awareness.

We were very sad to hear of the loss of Tom Jarrett.

July is also a month when we remember Robert Doyle, who died in 2013. Our deepest sympathy to the loved ones of all lives lost.

Links to an excellent summary by Dr. Naveena Navaneetharaja of a detailed review she co-authored (published in June in the Journal of Clinical Medicine) and an article by Ben Halford are in our July review of the Invest in ME Research on the role of gut bacteria and viruses in ME.

Ros Amor was very pleased and impressed to receive a reply from Paddinton Bear creator and author Michael Bond CBE to her letter about Let’s Do It for ME Bear. Ros got ME following a gut virus when she was 8 years old, and is a founding member of Team Let’s Do It for ME. Read about Ros Amor here.

Tanya Mawer transferred the latest amount raised by her family for Invest in ME Research and recalled that they joined the Let’s Do It for ME campaign at first as youngest daughter Tara had ME, and five years later, Tara’s sister Tasha and then Tanya herself fell ill with ME. Read more about the Mawers here.

Zoe Johnson features in the July/August Olympic edition of Essentially Local magazine. Read more here.

Makayla Nunn completed her third term at Priory Community School and presented Headteacher Mr Coles with the school’s very own Let’s Do It for ME Bear. As well as her Walks with the Animals, Makayla has just set herself a new challenge for Invest in ME Research with horse Tommy – justgiving.com/Makayla-Nunn2

Upcoming in August…

1st August – The Day to Donate £1 to Invest in ME Research

5th August – Runnin On Empty by Stacy Hart with Invest in ME Research News

8th August – Severe ME Day (an initiative of The 25% M.E. Group)

11th August – Raffle Draw for Lucy Macdonald’s Forgetmenot Quilt

14th August – Chris Turner’s Skydive for Invest in ME as his wife has ME.

15th August – Mike Harley’s 7th EU Marathon for Invest in ME Research.

Chloe Riches is dying her hair blue for ME Awareness in August before shaving it off in September to raise funds for Invest in ME Research.

Together we are doing it for ME!

THANK YOU ALL SO MUCH FOR YOUR SUPPORT