The Dress For ME Challenge!

By Jen Govey

I’m raising money for Invest in ME Research with The #DressForME Challenge!
I hope you will join me and we have a little fun on the way!

The Challenge:

* Dress in something extraordinary. Do something ordinary.
* Take a photo, post it on social media such as Facebook, Twitter and Instagram with the hashtag
#DressForME and a link to this fundraising page:
* Nominate 3 friends to join in!
* Donate here and let me know what you did! 😜

Thank you so much for your time, generosity and sense of fun. This will make a huge difference to the lives of those living with ME, plus I will love you forever! 😍

I’ll be joining in myself of course as this is for my favourite charity and I love fancy dress! I came up with the idea as people with ME can often find it a struggle just to dress and do basic things healthy people take for granted. I am just coming out of a severe patch and just wanting to make a difference as there is no real treatment for severe and moderate patients and very little support. Please go and check out the IiME website to see the great work they are doing to change things.

Have fun! 🙂

P.s. You don’t have to dress up to donate!

P.p.s. You can have a #DressforME day at work or anywhere you fancy if you don’t want to do it alone!

Donate here:

July FUNdraising tips 

“Follow that bear”, raise a bit of bling with your summer “Cordon Blue”, learn how to raise money with TopCashBack and discover the all new superbear from The little embroidery studio this July.

Follow the antics of our volunteer IiMER bear as he works hard to raise funds for research into ME. Pizza-loving, hardworking, and all-round awesome bear! (You may already be acquainted with him from his fundraising totals updates pics).

Follow him on instagram or twitter

He’s sure to keep you bearly amused!

Add a touch of Cordon blue to your picnics, BBQs and other outdoor dinner functions this summer. Invite friends round, dress up as smurfs, shake up some blue cocktails, add a touch of blue seasoning to the food and most importantly, enjoy! Tell friends about IiMER’s vital work and ask for donations! Visit Cordon Blue for ME on Facebook for inspiration, ideas and banter!

Bears are going barmy for IiMER ATM! The little embroidery studio have created a brand new superbear and they’re donating ALL the proceeds from each bear sold, to a charity very close to their hearts – Invest in ME. That’s a fab £25 donation for each bear sold!!!

Just to prove to Paul he hasn’t been forgotten- is the UK’s most generous cashback website and is recommended by Martin Lewis of MoneySavingExpert. 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. You then get to choose whether to receive all of the money in your account yourself or opt to donate all, or a percentage of it. There is also a mobile app – learn more and download the app here. Start raising money now by signing-up. There will be a banner stating you have been referred by ‘Paulk22’.

Remember the “One day, one pound” scheme. Unfortunately only donations from £2 can be made via this link but you can donate via justTextgiving by texting APFR99 £1 to 70070 (UK). Every pound helps!

Amy Tooley’s 500km of running in 2017

Amy Tooley has set up the first JustGiving page for Invest in ME Research of 2017! She explains why in her story on JustGiving ….

I have the best big brother that you could hope for. He is kind, caring and very funny (annoying sometimes too like an older brothers usually are)!

I have spent my life looking up to him, his opinion of me and my life choices matter greatly to me.

I have watched him go through life having fun and being successful in everything he has put his mind to which is why it is so hard to now see him struggling daily all because of him having ME.

I have seen this cruel illness, that very little is known about, take so many things from Luke. I have seen it wear him down to some scary places but I have also witnessed my amazing brother fight back everytime. I knew he was tough but I never realised how tough until he got ill. Those of you who know me well know how much ME has affected Luke and all his family.

I cannot even imagine half of what he goes through every day due to this illness and what makes it all even worse is that unlike other illnesses there is no medication to cure it or lessen the symptoms.

Luke is reading and researching everything he can on ME and is trying to raise money for research charities such as liME by setting up an annual “Walk for ME” event with his friends which has raised over £70,000 to date to fund this vital research.

I have not run 10k since August 2015 when I found out I was pregnant with Josh so the thought of running an average of 10k each and every week for a year is pretty daunting but if I can raise £500 for ME research then every km and shin splint will be worth it.

Fitting running into my days with two little ones to look after and returning to work in May is a bit of a daunting task so even if you can only spare a couple of quid to help me get to my target I would greatly appreciate the support and motivation.


Amy x

Thanks for taking the time to visit my JustGiving page.

Proud big brother Luke Remnant sent us the photos above of Amy with him as children and with her husband Rich. Luke plans to write a guest blog later, when he is feeling a little better, as and when his health allows. He has been busy, along with Sarah-Louise Jordan and Ian McPhee, launching Walk for ME 2017, the 5th year of this successful month of May ME Awareness fundraiser for biomedical research into ME (Myalgic Encephalomyelitis). Here is our page with further information and all the links for anyone wishing to support Invest in ME Research by taking part in Walk for ME 2017 –

August Updates

august updates banner

Phew! Another sizzling summer month on the international scene for supporters and colleagues of Invest in ME Research. As the charity quoted for Stacy Hart’s 4th August blog at Runnin On Empty…

“It is summer and it means holidays for most – but not for Invest in ME volunteers. Fundraising for our strategy of biomedical research projects continues with numerous schemes being set up to raise awareness and funds by a great team of supporters.

Since the June conference in London the charity has been busy getting the DVD of the event ready for delivery. The many hours of film footage need to be edited to a format that contains information in an accessible form, avoids unnecessary gaps, unplanned noises, comments or delays.

As ME is such an underfunded and under researched condition it is supporters of our charity that enable us to provide the latest education on research into ME – and build a strategy based on international collaboration in translational biomedical research – which looks for causes rather than simplistic psychological remedies that waste time and money – and lives.

Unfortunately, the NHS provides very little for ME patients and the services do not match the demand. Patients and carers rely on the internet and charities like ours to provide the information. Kjersti Krisner from Norway spoke at the pre- conference dinner about very severely ill ME patients and she said they are so grateful when someone cares about them. They live in hope and are so happy if they improve a little. Kjersti’s wonderful, positive pre-conference presentation is a must-see – and will open our IIMEC11 conference DVD.”

The IIMEC11 DVD containing the full presentations by leading biomedical researchers into this disease from around the world at the CPD-accredited 11th Invest in ME Conference held in London in June is available now and has already been distributed to 15 countries.

The conference followed the 2-day Invest in ME Biomedical Research Colloquium which brought researchers together from 13 countries to foster international collaboration in biomedical research into this disease. The conference report is available here. The keynote speech was given by Dr Vicky Whittemore of the NIH. The last research presentation of the day was given by Director of the Stanford Genome Technology Center at Stanford University, Ron Davis, whose son Whitney Dafoe has very severe ME/CFS. As promised, the IIMEC11 DVD also includes the very moving and thought-provoking presentation ‘Voice for the Voiceless’ by Kjersti Krisner, Norwegian advocate and mother of three children with severe ME. Order it here

Severe ME Day
Severe ME Day is held on 8th August in honour of the birthday of the late Sophie Mirza, launched by The 25% M.E. Group in 2013 as a day to bring public awareness to those suffering from Severe and Very Severe Myalgic Encephalomyelitis and to remember all those no longer with us. The idea for this special day of understanding and remembrance was conceived by Diane, whose daughter Lili sadly died last year. Diane’s Story – Lili was published by Invest in ME in February 2013. 

The Let’s Do It for ME campaign was launched by people with severe ME, inspired by an article in the Eastern Daily Press in April 2011 on the progress of the proposal by Invest in ME to establish a Centre of Excellence for ME, featuring Kerry Newnham. Kerry has severe ME and was a text pal of Lynn Gilderdale, pictured at the top of our memorial poster with kind permission of Lynn’s mother, Kay Gilderdale. The names in the background of the poster are from the National CFIDS Foundation Memorial List.

Fundraising Updates
Jane Hurst raises funds for The 25% M.E. Group and Invest in ME Research through sales of the greetings cards she creates at home as a long term sufferer of severe ME. Jane’s Nature Photocards are available to buy online and her family also hold sales at local venues throughout the year. After a sale at O’Flynn’s Budgen’s Poringland store on 13th August, Christine Hurst (Jane’s mum) wrote, “We did really well and just about sold out. Everyone was full of praise for Jane’s lovely cards and we raised £186.20. Thank you O’Flynns Budgens for letting us sell the cards and their very generous customers.” O’Flynn’s Budgens tweeted, “Well done and thank you to all. We hope Christine will be in store again soon”. Our thanks and congratulations to the store on their 10th Anniversary this year!
Bill Clayton of The York ME Community set up a JustGiving page for Invest in ME in August. “Although I’m no longer able to work, I have short periods where I can concentrate on projects such as fund raising for Invest in ME who are doing such great work. The current project is with the aim of gaining more foot soldiers in the York area by bringing businesses on board by offering to advise their HR Teams about ME and through our inaugural Inter Company Fantasy Football League. Every penny of the funds raised from their registration fees will go to Invest in ME, and the hope is to to continue to raise funds in other ways too. Thanks to the York businesses who have supported us in supporting Invest in ME Research.”
Congratulations to Maria Houlihan on winning Lucy Macdonald’s Forgetmenot Quilt raffle drawn on 11th August. Lucy added, “Commiserations to those of you who didn’t win but may you have peace in the knowledge that the funds raised will be for the winning of a cure of this chronic dis-ease. Thanks again to all of you who took part.”
High five to Chris Turner for doing a skydive on 14th August, and thanks to his supporters raising £405 + £92.50 for Invest in ME!
On 15th August, Mike Harley was in Poland to run the 7th of his 28 EU Marathons. He wrote, “The finish was superb, amongst the best I’ve experienced, I ran over the line with my Invest In ME flag and got snapped a lot”.
Winner and runner up of Paul Kayes’ Rio Sweepstake generously donated their prize money to Mike’s JustGiving page. Thanks eveyone supporting Mike’s mega marathon challenge for Invest in ME.
Emily Norton correctly guessed the exact number of medals in Sophie Tennent’s Rio 16 Charity Sweepstake, which added at least an extra £50+ into Sophie’s JustGiving page in memory of those who have passed away from ME. She wrote, “It all adds up and I am entirely grateful for your support”.
Thanks everyone who organised and took part in the Charity Sweepstakes.
Big thanks to tenacious Team Rainbow Rabbits for doing The Colour Run Birmingham on 20th August for Invest in ME! Becky Hithersay wrote, “We did it!  Big huge thank you to all who sponsored us, you raised £257 (plus an extra £46.75 Gift Aid) for IiME (Invest in M.E). This is a fantastic amount and we’re really grateful to every one of you. Hopefully this also will reach those who didn’t leave names. Goodness me, I’m overwhelmed! Here’s a few pics, what a great day we all had, and the kids did a fantastic job”.
Inspired by a friend with ME “opening her eyes to this illness”, Penny Hooper announced her plans to raise awareness and funds for Invest in ME while going Round the World for ME and also nominating friends for a colourful challenge! You can find Penny’s page on Facebook, follow her on Twitter and read her story on JustGiving. Big thanks to Penny and everyone supporting her.
Stu Nimmo geared up for his runs for Invest in ME Research with specially designed T-shirts. He is doing this to support Karen Morris and donations go to her page on JustGiving. You can find Stu Nimmo runs for Invest in ME Research on Facebook, follow Karen Morris on Twitter, and support their fundraising efforts at Karen’s page on JustGiving.
Chloe Riches posted on 16th August, “I’ve gone blue! Now just waiting for 6th September before it all comes off 🙂 please share/donate to help this great cause 🙂 thankyou xxx”
Paul Kayes wrote that, so far he has earned £361.52 using TopCashBack all of which has been donated to Invest in ME Research and gift aid added so £450 in total. Would you be willing to sign up using our referral link?
Lynne Allan continued to sell her delightful hand-crafted jewellery available on Etsy at ME2UDezignz with proceeds kindly donated to Invest in ME Research. You can find ME2UDezignz on Facebook, follow on Twitter, and keep an eye out for her Fiver Friday offers.
Thanks to Alison Orr, Invest in ME is one of 204 charities nominated by Phoenix traders which will receive a donation from The Phoenix International Charity ranging from £50 to £1,000, based on 70% of the funds raised through Christmas card sales in 2016. Alison added, “At least 20% of all sales through goes to Invest in ME, so buy your Christmas cards from me and even more will be donated to Invest in ME! The Christmas brochure is online now. Have a look at the online flipbook version at the link. Delivery only £4. All profit to Invest in ME.” You can find Cards 4 Invest in ME on Facebook and follow on Twitter.
Research Updates
August Update on Invest in ME B-cell/Rituximab Research 

Invest in ME announced that they have agreed to fund an additional student at UCL to assist with the project “B cell function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Investigations of metabolic function during B cell maturation and differentiation”. The aim is to investigate potential differences in B cell maturation, differentiation and metabolism between patients with ME/CFS and healthy controls.  The charity will underpin the extra work with a grant of £9000 to cover the student who will work until early 2017 assisting existing PhD student Fane Mensah and Dr Jo Cambridge. The team hope to identify whether potential differences are due to alterations in signalling or metabolism in B cells from ME/CFS patients and the additional student resource will hopefully accelerate Fane’s project.

Thanks to mulitiple generous acts from individuals and organisations (click here) and the amazing generosity from the Hendrie Foundation who have pledged a huge sum toward the rituximab trial and B-cell research, Invest in ME has managed at the time of this article, to raise £495,000 for the total research either performed, underway or coming to be performed. (click here to donate).

August Update on Invest in ME Gut Microbiome Research 

The total raised reached £175k of the £200k target and the charity posted –

Invest in ME continue to build their foundation of biomedical research at Norwich Research Park by maintaining their medical student sponsorship grant strategy for the third year running. The medical students they sponsor take part in the biomedical research projects the charity is funding which gives experience but also raises awareness amongst other medical students about myalgic encephalomyelitis. Their grants are for £5000 minimum.
They plan on continuing to maintain this key part of their research strategy. (click here to donate).

Upcoming in September

1st September: 1st of the month – the day to donate £1 to Invest in ME Research

4th September: Stu Nimmo runs Salford Quays 10k –

6th September: Chloe’s Head Shave for Invest in ME –

12th September: Makayla Nunn will be 13 years old. She wrote,
“it will be 5 yrs in October that I have been ill, but this summer the hospital have said if I can manage and pace myself I can spend extra time with my horse Tommy. So because of this I want to challenge myself and Tommy to jump a 4ft jump… this will be a challenge as I’ve not been jumping for that long and Tommy has had a bit of a rest from jumping but I know we can do it and no better way to challenge myself than raise money for Invest in M.E at the same time. Please help me to help Invest in M.E because this illness can affect anyone at anytime and at any age no matter how fit or active they are M.E doesn’t care but I do I want answers. Thanks for taking the time to visit my JustGiving page.”

28th September: Deadline for voting for the JustGiving Charity of the Year award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in IiME then click on their logo to complete the online voting form.

Wishing you all a super September – thanks so much for your support!

John and Tom Cycle from John O’Groats to Land’s End

By Tom Moysey

Savage Moysey - JOGLE 2016
John Savage and Tom Moysey JOGLE Cycle 2016

John and I will be slipping into our finest lyrca to cycle from John O’Groats to Land’s End between 29th April to 13th May. It will be tough, the weather may be terrible and our lyrca may chafe but it will be a great adventure.

The idea initially started as a bit of an adventure as it’s something that we’ve had in the back of our minds to do for a while and last year John decided now was the time and we started to get the ball rolling (initially by buying bikes as neither of us even had a bike or any cycling gear until the middle of last year!).

In terms of the charity aspect, one of my oldest friends was struck down my ME about a year and a half ago and went from being a PE teacher and avid sportsman to pretty much house bound for over a year. Even now he only feels 45% of his old self but he’s learning to manage the illness as best he can.

He wrote a blog some time ago (link below), which was the inspiration behind our decision to do the ride for Invest in ME as neither John or I were aware that ME research/treatment is so poorly invested in – it’s pretty shocking and unbelievable when you actually hear the facts about it.

We’ve spent many hours doing all the planning ourselves and will thankfully be supported by John’s father in law, who will be following us in a motorhome (which will be our home for the two weeks).

All that’s left now is to get cracking and pray for good weather (seeing snow in Scotland is not the best start to the week of departure!).

We set off on our journey up to John O’Groats on Wednesday 27th April, in preparation to start the long cycle south. Many thanks for the good luck wishes! For any donation, small or large – thank you!

Show your support: share John and Tom’s event

The article that inspired this event:
Raising awareness and finding a cure. M.E- The hidden illness Blog by John Mackay. Both this blog and the article shown below were published in May 2015.

Article by Tom Ramage in the Strathspey & Badenoch Herald in May 2015 about John Mackay's fundraising for Invest in ME.
Article by Tom Ramage in the Strathspey & Badenoch Herald in May 2015 about John Mackay’s fundraising for Invest in ME.