Walk Tall 4 ME

Amazing actor and advocate Jon Campling has set up a new fundraising page for Invest in ME Research: justgiving.com/fundraising/walktall4me

Support Jon Campling’s Walk Tall 4 ME: www.justgiving.com/fundraising/walktall4me

Catch up on Jon’s fantastic fundraising throughout 2017 in our blog
Campling Can.

Thank you for your support!

Happy Birthday Jon Campling!

Best Birthday Wishes to Jon Campling and Big Birthday Thanks
for all he does to support Invest in ME Research!

Jon aims to raise £501 for the charity to help celebrate his 51st birthday today.

Donate to Jon’s birthday fundraising for IiME Research on
www.justgiving.com/fundraising/support-invest-in-me-for-my-birthday

Follow @joncampling on Twitter.

Find Actor Jon Campling on Facebook.

Catch up on Jon’s support for IiME Research in 2017 on Campling Can.

https://twitter.com/joncampling/status/929800731498074112

Thank you for your support!

Campling Can!

Jon Campling 2017

Actor Jon Campling takes his Invest in ME Research ‘Can Do’ charity collection box along to various events around the country whilst also doing amazing awareness raising of Myalgic Encephalomyelitis.

The Hogwarts Express may be stoppable but this Death Eater definitely isn’t showing any signs of slowing down in his support of Invest in ME Research through 2017!

We will endeavour to keep up here with highlights from Jon and his fan-tastic supporters so give us a shout if we miss anything out!

Easy links below to follow on Twitter and you can also find Jon Campling Actor on Facebook and via his website at www.joncampling.com

Here’s a super article by Ginny Anderson in the Eastbourne Herald – Death Eater from Harry Potter films moves to Eastbourne.

Jon created a fundraising page on JustGiving to help celebrate his Mam’s 80th birthday on 5th March: www.justgiving.com/fundraising/JonCamplingME

Audrey’s birthday coincided with the publication of a book by another champion for ME, Ian Gibson, and his friend Elaine Sherriffs, ‘Science, Politics, and ME‘. Jon’s wife Ali has ME and he describes some of her experience in his great Foreword to the book, which is available to buy on Amazon. (Please use this referral link to generate a donation to Invest in ME Research at no extra cost when you buy anything from Amazon).

Jon also raised funds to help celebrate his own birthday on 18th November: www.justgiving.com/fundraising/support-invest-in-me-for-my-birthday

On 1st December 2017 Jon launched his new fundraiser #WalkTall4ME here on JustGiving:
https://www.justgiving.com/fundraising/walktall4me

Heartfelt thanks to Jon Campling and all his amazing fans, friends and family supporting Invest in ME Research throughout the year!

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And in case you missed it…

https://twitter.com/tennent_sophie/status/805059326293512192

Our very own Sophie Tennent managed to meet the man himself.

Above is an example of Jon encouraging young ME sufferer Makayla Nunn – herself now officially a hero!

Many thanks to Jon Campling and all his fans and friends supporting Invest in ME Research throughout the year!

July Updates

july updates banner

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.”

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

 

April Updates

April Updates

Dr. Nigel Speight was showered with expressions of support and gratitude in April by patients & families across the world upon news that the General Medical Council had published the conclusion of an Interim Orders Tribunal hearing that this wonderful doctor’s practice in the field of ME/CFS may be deficient (there were no findings of fact). The interim order states that Dr. Speight must confine his practice to NHS posts as a Consultant General Paediatrician. It prevents him from carrying out any work in relation to ME (including speaking or lecturing on the subject) and will be reviewed after 6 months. In January 2016 Invest in ME sent a letter to the GMC in support of Dr Speight. They have never heard of Dr. Speight being criticised by any patients or their families. On the contrary, he is extremely well regarded by everyone in the international ME field and has presented at the CPD accredited international Invest in ME conferences and invited to speak at numerous conferences in Europe. He gave the pre-conference dinner speech for the 9th international Invest in ME conference in 2014. His talk was on very severe ME and is included in the IIMEC9 DVD of presentations. So we patients with severe ME driving the Let’s Do It for ME awareness and fundraising for Invest in ME Research sincerely hope that Dr. Speight is relieved of these restrictions by the GMC at the earliest possible opportunity. We fully support high quality education of medical students & in-service training of NHS doctors. Our doctors deserve this and our lives depend upon it. Far from being denied the specialist expertise of Dr. Nigel Speight, the world needs more like him.

April Updates on the Invest in ME Research ..

Our update on the IiME B-cell / Rituximab Research

Our update on the IiME Gut Microbiome in ME Research

April Awareness & Fundraising for Invest in ME Research Funds ..

Model Joanna Chamberlain has two grown up children with ME and she hosted a Vintage Fashion Show in Caterham, Surrey raising over £1200 for Invest in ME Research Funds. Watch out for an upcoming blog on this spectacular event. Meanwhile, you can take a stroll back in time through the stunning photos at Joanna And Her Vintage Violets Charity Catwalk on Facebook.

Lee Taylor completed the Spring Wolf Run and exceeded his fundraising target for Invest in ME. Lee explained: “My younger sister Kassandra has suffered from this debilitating condition CFS/M.E for 12 years and most recently been diagnosed with fibromyalgia. I will be giving all donations received via “just giving page” to Invest in M.E on behalf of Solihull and South Birmingham M.E support group of which my sister has been a member for a number of years All donations will be very much appreciated.” What a great brother. Thank you Lee.

It was all Greek to marathon man Mike Harley as he ran the 5th of his 28 EU Marathons in Thessaloniki. Mike is doing a great job raising awareness of this illness and funds for Invest in ME as he makes his way across Europe. Invest in ME is a founder member and current chair of the European ME Alliance of patient organisations. Mike’s epic efforts are inspired by a determination to help all sufferers, like his friend Ian Couch, to have proper recognition and treatments for ME. Before setting off to defeat the Alexander the Great Marathon, Mike conducted an interview to find out what it’s like to be a patient with ME in Greece. Click here for Mike’s Spring Update.

Can it really be a year since amazing dad Mike Shepherd ran a full marathon at the North Pole? Click here to see our Facebook photo album of Mike’s incredible journey to the Arctic for Invest in ME.

Actor Jon Campling was up to tricks at Sci-Fi Scarborough. Not content with waving his Invest in ME Charity collection box with his usual flourish (scroll down Fundraising 2016) our favourite Harry Potter Death Eater unicycled across the stage! Michelle Nunn also tested his ability to learn his lines by challenging him to say ‘Myalgic Encephalomyelitis’. Is there no end to this man’s talent’s? Find out here on youtube.

We were thrilled to see Stacy Hart back at the Watford Observer. To celebrate her return she is giving away two of her exclusive design Runnin On Empty T-shirts and has given Invest in ME a slot in her new fortnightly column for ME news and we must say, didn’t they do well! Read more at Runnin On Empty- Good Grief, I’m Back.

Spreadshirt is offering free standard delivery for 2+ items until 1st May.
Checkout Code: TWOWOO
Valid until 01.05.2016.

All seller profit from our online shops goes direct to Invest in ME.

These are * Let’s do it for ME * Designer-ME * Make ME * The Big Sleep for ME *
* ME Awareness *

Joan Crawford’s coast to coast cycle ride will take place on the last weekend of April/beginning of May 2016 – the bank holiday weekend. Click here to read Joan’s interesting account of why she is doing this for Invest in ME.

Tom Moysey & John Savage set off on their cycle ride from John O’Groats to Land’s End on 29th April. Read all about it here.

Lynne Allan reached her target of 100 sales since opening her online jewellery shop on Etsy in October with which she raises awareness & funds for Invest in ME. See her full range at ME2UDezignz.

May is ME Awareness Month and this year is extra special as May 2016 marks 10 years since a small but mighty group of patients & parents registered as the charity Invest in ME. The first 3 days of June will see the 11th Invest in ME Conference & 6th Biomedical Researchers into ME Colloquium.

We’ll follow shortly with more news and a summary of what supporters are doing for May Awareness & Fundraising for Invest in ME Research. ME Awareness Week is 9th to 15th and May 12th is International Awareness Day for ME and other Chronic Immunological & Neurological Diseases.

We also hope to bring you news and updates throughout the month. So this is may be a good time to click here to enter your email address if you would like to receive our blogs by email and to please contact us if you would like us to feature your event, write a guest post for our blog, or with any questions.

Latest totals for Invest in ME Research Funds ..

£483k raised of £520k target for the B-cell/Rituximab Research

£167k raised of £200k target for the Gut Microbiome in ME Research

There are also current sponsorship opportunities for the Invest in ME Conference Events.

Thank you for your support!

April Updates