June Updates

A very busy first week of June saw the hugely successful international Invest in ME Conference Events, held by the charity in the heart of Westminster, comprising a two-day workshop for the world’s leading and emerging biomedical researchers; meetings of the European ME Alliance of patient organisations and their recently formed European ME Research Group; and the public conference on 3rd June, which generated a lot of excitement. The charity was quoted by columnist Stacy Hart as saying, “It is a wonderful mixture of dedicated researchers, clinicians, patients, carers and patient group representatives from all over the world that attend these events each year to brainstorm and collaborate for a better future for ME patients. There is a sea of change happening in the ME world and we hope it is not too long that patients and their families can reap the benefits for real.” Conrad Bower was first off the blocks with an excellent article on the conference, published in The Canary and we were really pleased to see that he chose images by Wolfgang Stiller that feature in the charity’s Matchstick Campaign

The second paper from the Invest in ME Research strategy was published on 6th June in the Journal of Clinical Medicine. It is a comprehensive review of the current evidence of infectious aetiology and a proposal for future research. The article is titled A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?.
We will write more about the research updates soon.

An article about Kate Mincher’s Famous Five (Sam, Christina, Nicole, Matt and Miles) appeared in their local paper on 1st June and is also online here with great pictures of their sponsored walk from Stroud to Cardiff.

Kate posted on Facebook, “Love to everyone involved with Invest in ME and good luck with the activities in London this week”.

Also in print was an article by Laura Chamberlain in the June issue of Vintage Life Magazine. Laura’s Pen has been busy. She wrote a great post for Black Dress Day and now has a printable version of her comic ‘The ME Adventures’.

We published a pdf version of Amy Stone’s hand-painted ‘ME Mythbuster’s’ cartoon. Amy wants it to be used to raise awareness and funds for Invest in ME Rituximab Research (which begins with B-cell studies. First paper is here).

Sophie Tennent has also set up a memorial page on JustGiving in response to the waves of shock and grief through June at news in quick succession of deaths of members of our global community of people with Myalgic Encephalomyelitis, from Australia, Canada, USA and UK. Our deepest sympathy to all their families and friends. Makayla Nunn did her Horse for Walk for ME 2015 on behalf of others too ill to walk or had lost their lives, with as many names that would fit printed on the back of her T-shirt. This is also the second year running that she took part in Black Dress Day held on 31st May and we thank all who joined this inspirational little girl in taking part or supporting this year.

Makayla Nunn continued her Walks with the Animals in June. This year she has so far walked with an alpaca, a tortoise and a donkey! Makayla is also one of the Hidden Voices of ME, which has had over 1500 views so far, and received a well deserved amazing award from Sophie Tennent in June. You can support Makayla’s 2016 fundraising for Invest in ME on JustGiving here.

14 year-old Zoe Johnson is another member of the growing band of brave young people determined to help the charity to create a better future for sufferers of all ages of Myalgic Encephalomyelitis. Her outreach tutor has nominated Zoe was shortlisted as a finalist for Young Role Model of the Year, nominated by her outreach tutor for her fundraising for Invest in ME (and for the rest of her work towards her Duke of Edinburgh Bronze Award, and her huge efforts to do her online lessons). Zoe had her long locks cut off in June for Invest in ME and you can see the stylish before and after photos here.

The Invest in ME Research Gut Microbiome Fund received a big boost thanks to Noreen and Anthony Murphy and their friends and family Walk for M.E. at the beautiful Belvedere House and Gardens at Mullingar in Ireland. You can see their donation and comment on our JustGiving page.

There was another special referral offer on Top Cashback. Paul Kayes has raised £350 plus Gift Aid with this method of fundraising for Invest in ME so it’s well worth a look along with various other ways to raise funds for free for the charity.

Paul Kayes has also organised a Euro 2016 Charity Sweepstake for Invest in ME Research. Thanks everyone supporting his event on Facebook and JustGiving.

While everyone was hard at work at the London conference events, Mike Harley was busy in Stockholm raising awareness and funds for the charity’s world class research by running the 6th of his 28 EU Marathons. He thanks to everyone who dropped a coin in the charity box at the conference raising an extra £126!

After the result of the UK EU Referendum, Mike told Eddie Izzard on Twitter, “We may be leaving the EU but I’ll continue running marathons in every country in it for Invest in ME”. Next on Mike’s agenda is Poland.

A big thank you to Ian Potter for once again running the Hadrians Wall Half Marathon on Sunday 26th June.

Thanks to editors Eddy Keuninckx and Rob Wijbenga for including some of the above in the June issue of The Global M.E. Chronicle.

A BBC report on the 30th June release of an audio drama produced by Barnaby Eaton-Jones was in the Top Ten Most Read / Most Popular for news articles. Barnaby’s guest blog for our Nomenbar for ME Movember Awareness of men’s health was among those we reposted on Facebook in June for Father’s Day.

Stacy Hart is another writer who regularly makes it the Top Most Read with her column in the Watford Observer. Due to changes and ongoing technical problems with the online news outlet, she may have to permanently relocate her articles. She published her 1st July edition here on her blog.

As we are late publishing the June Updates, many thanks all who donated on 1st July to our monthly One Day – One Pound fundraiser.

Big thanks again also to actor Jon Campling and fellow Comic Con-ers at Hull in June for raising yet more awareness and an extra £78 for Invest in ME Research Funds. Next Comic Con stop in July – Southampton. He will be in Bitterne on Sunday 3rd July for selfies, autographs and fundraising for Invest in ME.

Click here to take advantage of a golden opportunity in July to join Alison Orr’s winning team of Phoenix Traders for Invest in ME.

Find out what’s in store for jewellery by Lynne Allan on Etsy at ME2UDezignz

Finally, thanks everyone who signed our card to congratulate Invest in ME on their tenth anniversary as a charity. Speaking of anniversaries, July 2016 marks five years since we launched the Let’s Do It for ME campaign to support the proposal by Invest in ME to establish a UK/European Centre of Excellence for ME. So watch this space for a series of blog updates this month as we reflect on the progress that your support of the campaign has helped the charity to achieve so far and on next phases of the Centre of Excellence projects.

Meanwhile, you might wish to like the new Invest in ME Research page on Facebook and follow their new CofEforME page on Twitter. Signing off for now courtesy of Jon Campling..

Thank you everyone for your support!