Rebecca Ayling is on the hunt for a cure for ME…


“I was diagnosed with M.E when I was 13 years old. I had symptoms for a few years before this, but it took me those few years to be diagnosed because there is no criteria to be diagnosed with M.E. During this time, I felt like I wasn’t living, I was just existing. I was in my bedroom sensitive to light, noise and smells so I was unable to be around anyone else, unable to watch TV, unable to use a mobile phone, pretty much unable to do anything. I lost a lot of weight because I couldn’t eat because I always felt sick. I slept nearly 20 hours everyday. I had to leave school as my school didn’t believe I was ill and began court proceedings with my parents for my attendance. Luckily, the judge saw my medical records and instantly proved that I was ill and it was not mine nor my parents fault that my attendance was poor. This stress only made my illness worse so I left school. Thankfully, the removal of this stress helped me to improve enough to be able to do my GCSE’s at home. My parents had to fund these online courses, each costing £295. The LA refused to help fund any of my education from home. I was very grateful to manage to get 6 GCSE’s, 4 of these being grades A*-C. I have also managed to go to sixth form and do my A levels. I am on a part-time timetable and I have taken my A levels over a 3 year period. That’s my story. 


However, it’s important to note that I am only a moderate sufferer of M.E. There are people who suffer severely from M.E who are permanently bed bound. Recently, I had a 2 week period of being mostly bed bound and I couldn’t leave the house. This gave me a taste of what it really is like to have severe M.E. It made me realise just how cruel and heartless this illness is. It has no mercy. This is why I wanted to share my story and try and raise money for Invest in M.E who are currently carrying out research into the causes and possible treatment options for those M.E sufferers. 


Any donations, even £1 would mean the world to us.” Rebecca Ayling

Visit Rebecca’s justgiving page www.justgiving.com/fundraising/Rebecca-Ayling2


BT Donation Doubler

Raise over £100 before 20th February and BT could match your fundraising up to £1000!
BT donation-doubler

Invest in ME Research (IiMER) recently registered with BT MyDonate, a fundraising platform with no set up fees or commission or monthly charges. You can simply donate direct to the charity or set up your own fundraising page.

BT wants to help out five fundraisers by matching their funds for their chosen charity up to the value of £1,000.

To support our cause, all you have to do is set up a BT MyDonate fundraising page for Invest in ME Research and raise £100 by midnight on 20th February 2017 to be entered into the prize draw, or you could sponsor a fundraiser.

The £100 raised excludes gift aid, offline donations and donations made by the person who set up the fundraising page.

The Prize Draw is open to UK residents including employees of BT, their families or its agencies.

Want to help Invest in ME Research win a DD from BT?

Let’s do it for ME!

Read the full terms and conditions of the BT Donation Doubler here – http://home.bt.com/-nbsp/terms-and-conditions-11364123582464

Invest in ME Research profile on BY MyDonate is here – https://mydonate.bt.com/charities/investinmeresearch
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

One of the highlights of 2017 so far, which you can see tweeted below, is this 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

Heartfelt thanks to Jon Campling and all his fab fans and friends supporting Invest in ME Research throughout the year and
Happy 80th Birthday Year to Audrey!

Next stop Oxford Comic Con 22-23 April 2017

https://twitter.com/joncampling/status/838340807153287168

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https://twitter.com/joncampling/status/828994407630245888

And in case you missed it…

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!

December Updates

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Merry Christmas everyone!

With 5 PHD studies now being funded by IiMER and 1/2 million raised/pledged for the UK B-cell Research/Rituximab Trial (see here for more details) the climax of the year looks to be a glittering one for IiMER. So let’s attempt to celebrate it by making this the most fabulous festive season we can with plenty of fun fundraisers to donate towards/participate in.

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Congratulations to hardy runners, John Adams and his nephew Rob, who braved storm Angus to run the Brighton Brooks 10km marathon, coming joint first! John’s firm kindly donated an extra £500 to the £873.03 + £201.25 Gift Aid raised on JustGiving by the intrepid duo, bringing the total to over £1500 by John’s Brighton Brooks 10k adventure! . John posted, “Feel really pleased! Thanks to all my family, friends and colleagues who supported the effort.”

 

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A big thank you to Ann Phanco Mcneilage and Pooch Pageant for a fantastic donation of £50 towards Makayla’s just giving page which goes to Invest in ME Research. It means so much to Makayla, and both Trixie and Marley enjoyed their first pageant. (Trixie is pictured taking part in Black Dress Day)
 
justgiving.com/fundraising/Makayla-Nunn2
 
facebook.com/poochpageantfundraising/

 

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CONGRATULATIONS NOVEMBER COMPETITION WINNERS: Geoff Allen, Joanne Seller & Bernard Adams, you have each won yourselves;

a sleepyhead Cushion,
Mini Cheese Board,
Plaque: Any Day Is Better Once You’ve Put The Kettle On,
Diary,
Box 10 Christmas Cards,
Small Box Milk Tray,
Box Toffifee,
Maltesers,
Galaxy Duet Choc,
3 x Daim Bars,
Choc Coins.

Thank you everyone who took part for raising awareness, it was a wonderful turn out

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This year for our “No-Men-Bar for Myalgic Encephalomyelitis” month, our take on Movember awareness of men’s health, a very generous friend of our great supporter Geoff Allen launched a matching donations offer of £1,500. We successfully reached that target – and – Geoff’s amazing friend also offered to match the amounts raised by Jane Hurst’s last card sale (£186) and Amy Bakewell’s card sale/collection tin totals (£150), bringing the total raised for our ‘Matching Movember’ to well over £4000 including Gift Aid!

One donor to the matched donation offer was Grumpy Gramps who donated £500 plus gift aid and left the message “We live in hope”.

On Twitter Jan added “My dad 😀. He gave up driving for October. Broke out his bus pass & donated cost of petrol he’d have paid plus £1 a mile when he did drive.”

and “as for who gave him the nickname grumpy gramps. I couldn’t possibly comment.. 😊”. Thanks Duncan.

Warm thanks to everyone who donated and rose to the challenge set by Geoff’s very generous friend. www.justgiving.com/fundraising/Geoff-MMO

 
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On 1st December Sophie Tennent posted – So I did it guys!!!! I actually spent a whole month off of Facebook, and for someone like me who relies on it so much because of my M.E, this was really a big deal for me!
But it’s all for an amazing cause, to help raise money for research trials into M.E.. So for anyone who said they would sponsor me, please donate it to the link below and if anyone else would like to make a donation I would be SO grateful! I’ve seriously missed you all an unbelievable amount and I can’t wait to catch up with you all, especially all my online friends 💙😘 Donations to justgiving.com/fundraising/GIUtober

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Actor Jon Campling celebrated his 50th birthday in November and raised £102 for Invest in ME. He tweeted, “Amazing 2 days at #MCMComiccon Birmingham met so many lovely people and raised £102 for my charity Invest in ME”. Find him on Twitter @joncamping

See our ME Awareness page for another of Jon’s videos and other resources.

 
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Visitors to www.phoenix-trading.co.uk/web/alisonorr/ could choose from a selection of advent calendars, Christmas cards, wrap, decorations, with free shipping over £25 with all proceeds to Invest in ME Research from Alison Orr’s online shop.

 
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Also posted by Alison Orr – I have a new 🌟Golden Ticket 🌟worth £70 of stock to give away to the first person who joins my team in December! Have a look at https://www.phoenix-trading.co.uk/web/alisonorr/area/join-me/ then contact me if you’re interested in helping to raise funds for yourself and for Invest in ME Research!

 
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Julie Whitham, owner of TheSwiftRedFox, wrote that £3.75 from each set of these original design cards taken from her own painting, will be donated to Invest in ME. Find them here on Etsy – White Hart 

 
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This delicate, utterly unique flower, leaf and tendril lariat is a labour of love, handknitted in the Scottish West Highlands on tiny needles with fine cotton yarn. Special Christmas price £45 folksy.com/items/2353193-Spring-Flower-Lariat

 
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Visit our pages to find out how to raise funds for free at 1000s of online retailers whilst doing your online Christmas shopping this year

 
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Sign-up via our Tell-a-Friend link and TopCashback will make an extra donation to Invest in ME via Let’s Do It for ME co-founder Paul Kayes. Current offer is that IiMER will receive £20 for everyone who signs up using the link www.topcashback.co.uk/ref/paulk22 
Paul Kayes added, “As a thank you to superstar Mike Harley who is doing a fantastic job raising funds and awareness with his Mike’s EU Marathons, donation made thanks to earning £31.50 plus gift aid with TopCashback just for using U-Switch when I changed energy provider in November. My dear wife can’t understand why more folks don’t use it”.

See our page for all ways to raise funds for free for Invest in ME Research

 
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“Instead of Christmas presents I’d love donations for IiME because there’s nothing I want more than to get better.” Hannah Radenkova asked people to give her donations towards IiMER this Christmas instead of presents www.justgiving.com/fundraising/Hannah-Radenkova

 
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Sally Hogarth ran the Guys road race on 4th December, in support of her friend Hayley who has ME, more than doubling her fundraising target for Invest in ME. As Sally wrote, if you’d still like to donate, please feel free! It would be awesome to raise even more money for this very important charity ❤️ x justgiving.com/fundraising/Sally-Hogarth

 
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Big thanks to Amanda Kayes and her friend Penny Hunt who organised another bike ride raising £400 for Invest in ME Research.

 

Stu Nimmo landed in Peru, recovering from a broken thumb and minus luggage, for his latest adventure raising funds for Invest in ME Research – trekking, cycling, and climbing Machu Picchu.  3.5 hours in a taxi to Cusco and back…Finally Stu had his lost luggage and charity shirt. Just in time for the main bit of his trek to Inca Trail and Machu Picchu! That completes Stu Nimmo Runs for Invest in ME Research 2016! Thank you Stu and to all who donated, supported, liked or shared on Facebook – www.facebook.com/stunimmorunsiime or JustGiving – www.justgiving.com/isupportmeresearch

 

After completing the Great Birmingham Run in October, our gem, Gemma Warren, decided just one half marathon this year just wasn’t enough so she has now run the Milton Keynes Winter Half Marathon as well. Afterwards she said, “Made it round the MK Winter Half Marathon with the help of my brother-in-law. My favourite bit, running through the calf deep flood! There’s still time to sponsor me for Invest in ME Research 🙂
www.justgiving.com/fundraising/Gemma-Warren6

 

The Tredwells held a 24 hour sponsored bounce at the Mill Bay. Staff took part, customers were also invited to have a go and Shannon Tredwell & Osiris Butcher continued throughout the night until the morning. Afterwards Shannon Treadwell wrote – So happy to say me & Osiris have finally finished the 24 hour bounce.
Considering I was crying after just 3 hours I honestly have no idea how we made it 😂 but some how we just did 💪🏼
Thankyou so much for all the messages, support & sponsors we got, it means a lot to us.
Altogether we have raised £352 for M.E
💙💙💙💙

You can support the Tredwell family’s fabulous fundraising here – www.justgiving.com/fundraising/fundraisingforME
and find them on Facebook here – Awareness & Fund Raising For ME – Myalgic Encephalomyelitis
 
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Jessica Thompson’s Reindeer Raffle cost £2 a go, paid at this link and then choosing an available number from 1 – 40. At the end a number was chosen at random – congratulations to the lucky winner!

 
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Thanks to Diane Cramp, who’s set up a new page on JustGiving – Diane’s Cards for ME Research

 
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The 12 Days of Christmas Competition was launched by the European Federation of Neurological Associations ‘Under the Umbrella’ campaign to raise awareness of the wide range of neurological conditions. Thanks to them, well done everyone answering the question on Day 11, ‘ME is a serious, disabling and chronic disorder, ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness. What do the letters ME stand for?’ All together now…. Myalgic Encephalomyelitis! Congratulations to the winner, Sven-Olof Silveruddwinner.

 
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Posted by Bill Clayton on 23rd December –

The York ME Community Inter Company Fantasy Football League – Christmas Prize !

Congratulations to Bransby Wilson Ltd, the York based Parking Solutions company who have supported The York ME Community this year. One of their teams entered into our Inter Company Fantasy Football League look to be top on Christmas Day !

One of our other supporters, Nestle of York, have given us a box of goodies to give to the top team at Christmas, and so a big thank you to them and all the York businesses taking part and supporting us.

Despite the season being about half way through, there is still an opportunity for a sponsor to come forward to have their name added to the trophy for this and future seasons. Why not take this opportunity to support your local community and raise the profile of ME Awareness in York, an illness that affects around 800 people in the York area, with 200 being severe, meaning house or bed bound.

Finally, to all our supporters, we wish you and yours a Happy Christmas, and a prosperous and healthy New Year, and a huge thank you for all your support in 2016.

 
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In November, Carmel Cunningham spoke on BBC Radio Scotland The Kaye Adams Programme, discussing amongst other ME-related subjects, the PACE trial and how ineffective CBT is (one of the psycho-behavioural therapies tested in the trial).

A couple of years ago, Carmel met with David Tuller on his visit to UK, pictured above with Let’s Do It for ME bear. Dr. Tuller is academic coordinator of University of California Berkeley’s joint masters program in public health and journalism.

We were thrilled to see Invest in ME Research announce in December that David will be the guest presenter at the evening dinner prior to their 12th Invest in ME Conference (#IIMEC12) in 2017.

His presentation – #TearItUp – will include his work in exposing the flaws in the PACE Trial (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome).

IiMER wrote, “The results of his thorough journalism has brought hope to people with ME and their families who have long called for independent review of the PACE trial, and related research.

 

A lovey surprise on Boxing Day! A kind nomination in his thoughtful #my2016MEawards by great advocate, Tom Kindlon, co-author of a new reanalysis of the PACE trial. Thank you Tom!

 

Our deepest sympathy to Linda Wigman whose wonderful Mum passed away recently, and had kindly asked her friends to donate to her two favourite charities upon her death- Arthritis UK and Invest in ME Research. Many condolences Linda on your sad loss.

 
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On the subject of grief for loved ones lost, Stacy Hart was back online in her inimitable style on Boxing Day with an article ‘Forever Wonky‘, including news as usual direct from Invest in ME Research.

 
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Invest in ME Research now has a profile on BT mydonate. Create a page, sponsor a fundraiser or simply donate mydonate.bt.com/charities/iimer

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1st of the month! The day to Donate £1 to Invest in ME Research 🙂
It all adds up as you can see…

 

Happy New Year everyone and huge thanks to everyone for your support!
Invest in ME Research Centre of Excellence for ME

 

My Story by James Wythe

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My name is James Wythe, I’m 27 and currently living in the Bournemouth area, I have developed a passion for healthy living and cooking after falling very ill 6 years ago. My new blog focuses on gluten, wheat, dairy, egg and sugar free foods. Most of my time is spent either in the kitchen creating quick and healthy allergy free meals or thinking about new dishes I can make. Here is a link to my blog. www.healthylivingjames.co.uk

It all started when I fell ill in December 2010 just after completing my sports science BSc Degree at Bournemouth University (where I was playing golf for the University and also the Dorset County 1st team). I thought my illness was just a touch of food poisoning but for some reason I didn’t recover and the symptoms just seemed to get worse and worse. I tried to push through this but reached a point where I had to be rushed into hospital for suspected brain tumour. I had several brain scans but I was so weak at that point having lost nearly 3 stone in weight that I couldn’t eat, drink or even stand up!

On my third trip to hospital I was kept in for 11 days. I was tested for everything they could think of, however all the tests came back “normal”. At that point I had also become hypersensitive to more and more of the medication they were giving me. I also had a severe allergic reaction and developed a sensitivity to light, smells and certain foods. The doctors were unable to give any diagnosis apart from saying that I had some kind of viral infection, so they just sent me home and told me to rest and take it easy for a while.

I did go home and rest, unfortunately I didn’t recover or feel any better, in fact I just got worse. I was bed bound, unable to stand up or walk by myself. I couldn’t watch TV or look at my phone as I was extremely sensitive to the light which would give me awful headaches but to make matters worse, I suffered with severe insomnia often going days without any sleep at all. This made it impossible to see my friends and made me feel really isolated.

After multiple attempts to get help from the doctors they finally, after nearly 6 months, diagnosed me with M.E. (Myalgic Encephalomyelitis) also known as CFS (Chronic Fatigue Syndrome). I was told there was no “cure” and all I could do was rest and wait.

I started to follow some Facebook pages about M.E to gain more knowledge and came across a page called Let’s Do It For M.E (LDIFME) who were raising money for UK charity Invest in ME to do extensive research into the illness particularly into the gut. Over the next few months I contacted all friends and family members and managed to raise £3000 (The charity raised funds to match the donation making a total of £6000) towards the research which really helped them hit the £100,000 goal they had set. If you wish to donate to this charity or find out more about M.E then go to ldifme.org/foundation-research-project/

Continue reading James’s story here – http://healthylivingjames.co.uk/my-story/

Double the value of your donation to Invest in ME Research at
Matching Movember – justgiving.com/fundraising/Geoff-MMO

Find other stories for our Movember Awareness of Men’s Health at Nomenbar for M.E.

Huge thanks to everyone for your support!