New Year Update on IiMER Gut Microbiota Research

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Good news to start the year, Invest in ME Research (IiMER) posted an update to their gut microbiota and related projects being performed at the UK Centre of Excellence for ME in Norwich Research Park due to some very kind donations to their research being carried out in Norwich Research Park at the Instiute of Food Research (IFR) and University of East Anglia (UEA). They wrote –

We have recently received a wonderful donation from the Freemasons in Norwich and from a Ladies Sunday Lunch raffle in Norwich.

IiMER have decided to supplement this with funds from our biomedical research funds in order to make the total up to £2000.

This means that the total we have now raised for past, current and planned projects at UEA/IFR Centre of Excellence for ME is £181,000.

The cheques were presented at a dinner just before Christmas in Norwich.

Collecting the donations on behalf of Invest in ME Research were Dr Ian Gibson, Professor Simon Carding and Professor Tom Wileman, from IFR/UEA.

At the dinner Dr Gibson and Professors Carding and Wileman spoke of the charity and the research into ME being undertaken at UEA and IFR.

More details of this wil be availble from the Institute of Food Research (IFR) site soon.

We are indebted to the Masons and the Ladies for this wonderful gesture.

(Read post in full here – http://future.cofeforme.eu/ce-news-1701-01.shtml)

Our page about the IiMER Gut Microbiota Research Project

Thanks everyone supporting Invest in ME Research
and their Centre of Excellence for ME

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)
 
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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

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

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

 

August Updates

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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 http://www.investinme.eu/IIMEC11.shtml#dvd

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 created by Caged Bird 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? http://www.topcashback.co.uk/ref/paulk22
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 www.cards4investinme.co.uk 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 – www.justgiving.com/fundraising/isupportmeresearch

6th September: Chloe’s Head Shave for Invest in ME – www.justgiving.com/fundraising/Chloe-Riches1

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.” www.justgiving.com/fundraising/Makayla-Nunn2

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!

Review of Invest in ME Gut Research – what next?

It’s been all go since our last update on the Invest in ME Research studies of the Gut Microbiome in Myalgic Encephalomyelitis (ME/CFS for research purposes) in April. Firstly, thanks to all the patients and carers responding to the call to provide samples for the latest phase of this research. The patients taking part are under the care of Consultant Immunologist, Dr Amolak Bansal. The lab work is done at world-renowned Norwich Research Park, the base for the Invest in ME Research Centre of Excellence for ME. PhD student Daniel Vipond and Dr Navena Navaneetharaja have been busy (and getting up at 2am to set out on their journeys on some days) collecting samples from several severely ill house bound patients – an admirable result as patients with severe ME are not easy to access and they have only been collecting these samples for a relatively short time.

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It’s wonderful that Dr Navena Navaneetharaja is still actively involved in this research now that she is a qualified medical doctor. As a medical student working on the Invest in ME Research on the gut microbiome, she spent three months in USA working with Professor Maureen Hanson in her lab at Cornell University.

Professor Maureen Hanson gave a presentation at the Invest in ME Conference in London on 3rd June, prior to publication of a paper on 23rd June,
‘Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome’, which has received widespread attention in mainstream and international media.

The Cornell researchers found a lower diversity of bacterial species present in the gut of ME/CFS patients compared to controls. This lower diversity of gut bacteria is also found in Crohn’s disease and ulcerative colitis, both of which are caused by a malfunctioning immune system.

They were also able to identify patients with ME/CFS and healthy controls with 83% accuracy by analysing bacterial DNA from the gut microbiome.

Science writer Conrad Bower reported in The Canary that Professor Hanson,
“tantalised the conference with news of an as yet unpublished study, using microbiome metabolites as biomarkers, that has achieved 100% accuracy in diagnosing ME/CFS.”

Maureen Hanson

Maureen Hanson

At the conference, Professor Tom Wileman talked about viruses in the gut – the gut virome. The gut contains billions of bacteria, and has its own immune system, which ignores our own bacteria and attacks ‘bad bacteria’.

Some viruses live in or on the gut bacteria. These viruses are called bacteriophages (or phages for short). A number of small and large viruses are involved. They may kill the good as well as bad bacteria.

The greater the diversity of viruses, the less the diversity of bacteria.

Professor Wileman described the technique they used to find viruses in the gut. 100mg of faeces was placed in water, centrifuged and strained to obtain just the viruses. 16 samples of those with moderate ME/CFS have been studied. Each sample gives 2 million readouts. Software then sequences the viruses. 23 different families of bacteria were found, each with different phages. The imbalance of phage population may correlate with disease. This has been shown in inflammatory bowel disease.

Tom WilemanTom Wileman

Another familiar face at the Invest in ME Conference Events, Professor Mady Hornig, discussed the programme at Columbia University, USA. Microbiota are complex and involve the whole body. Many factors can cause disruption across the lifespan, from pregnancy to birth and infancy. Then follows environmental effects, genetic development and issues such as antibiotics. Professor Mady Hornig led a public meeting at Norwich Research Park last October with PhD student working on the Invest in ME Research on B-cells, Fane Mensah.

Fane Mensah  & Mady Hornig

Fane Mensah & Mady Hornig

Professor Simon Carding’s conference presentation on the recently formed European ME Research Group included reference to their plans to build on current activity and feasibility, such as: 1) Infectious origin a) environment b) microbiome alterations 2) Clinical trials a) Rituximab b) Bacteria based therapy.

This all underlines the Invest in ME Research strategy of facilitating international collaboration in their development of a UK/European Centre of Excellence for ME, as well as world-class professional support for the next generation of medical doctors and scientists. The charity commented that the continuing work and atmosphere at Norwich Research Park is very encouraging.

Simon Carding

Simon Carding

The full presentations at the 11th Invest in ME Conference in June are on the IIMEC11 DVD. Written summaries are in the official Conference Report prepared by Dr. Rosamund Vallings. You can find it on the Invest in ME Conference & Colloquium website here and in pdf here.

The second paper from the Invest in ME Research strategy was published on 6th June in the Journal of Clinical Medicine. Dr Navena Navaneetharaja is lead author of this detailed review, which examines mounting evidence pointing towards an infectious and autoimmune basis for ME/CFS, with emphasis placed on the impact of the intestinal microbiota and virome – the bacterial and viral communities resident within our gut.  The paper is co-authored with medical student Verity Griffiths, Professor Simon Carding and Professor Tom Wileman from the University of East Anglia Norwich Medical School and Institute of Food Research, all based at Norwich Research Park. It is titled, ‘A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

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So what’s next?

From a summary ‘ME/CFS – New review advocates a spotlight on both bacteria and viruses within the gut‘ on the Gut Health and Food Safety Programme blog, by Dr Navena Navaneetharaja,

“Our recent review highlights current understanding of the role of infection in triggering myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We focus on the origin of persistent immune-related symptoms in the condition and describe mechanisms that may explain underlying immune impairment and potential autoimmune processes in ME/CFS, where B cell depletion therapy is of significant therapeutic benefit. We also provide focus for further research by exploring the potential impact of the intestinal microbiome and virome using sensitive study designs.”

She concluded,

“The next steps in the Carding lab are to correlate phage populations in patients with severe disease compared to house-matched controls. This work has the potential to elucidate more distinct subpopulations within current ME/CFS classifications and of upmost importance, has the potential to influence therapeutics, providing much-needed approaches in preventing and managing a disease in need of confronting.”

bacteriophages in ME patient sample
Bacteriophages in ME patient sample

In an article on the review for the Institute of Food Research, ‘Do the Answers to ME/CFS lie within our Gut? Ben Halford wrote,

“Whilst virus detection and identification is currently difficult, the virome is considered more stable and personal than our resident bacterial communities potentially pointing towards a specific virome profile for ME/CFS patients.

If the detailed research efforts can be accelerated and conducted in a co-ordinated fashion, it will support the development of therapeutics to address and alleviate the diverse range of incapacitating symptoms of ME/CFS, and will then ultimately provide much hope in moving towards prevention of a disease ignored for too long.”

Journal of  Clinical Medicine  June 2016
Journal of Clinical Medicine June 2016

Two new PhD students will start in September/October in Norwich Research Park. One is funded by Invest in ME. The other is a self-funding student who is experienced in laboratory work and was specifically interested in participating in the ME research which has been started at UEA/IFR.

A third student position funded by Invest in ME is being advertised later in the summer.  With Daniel Vipond, this makes four PhD positions current or planned involved with the research into ME at Norwich Research Park.

The charity is also aiming to keep the MedRes studentships going as these have turned out to be very successful in many ways. These highly motivated medical students are not only very helpful for the research projects but they also become better ME-educated doctors as well as influencing their student peers. Some even stay involved in ME research!

UEA/IFR & UCL medical students at IIMEC10
UEA/IFR & UCL students at IIMEC10

The excellent work and progress described above in the careful and coordinated search for biological markers and medical treatment options for this disease is enabled by innovative and generous supporters raising funds in a number of ways, such as doing charity collections for Invest in ME, sponsored challenges (including the IFR Chilli M.E. Challenge!), fundraising events, selling handmade crafts or other items, taking part in various ways to raise funds for free, offering matched funding, or simply donating to the charity.

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The dedicated fundraising page for the Invest in ME Gut Research on JustGiving received a welcome boost of €3115 in May, 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 for ME Awareness Month.

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Thank you everyone supporting this vital research.

Ways to donate to the Invest in ME Gut Research

JustGivingjustgiving.com/fundraising/gutmicrobiome

Text MEGR66 (£1-£5 or £10) to 70070 (UK only).

Bank Transfer:

Please specify code BRF04MICROBIOME to donate to the Invest in ME Gut Research Fund.

Bank: Lloyds TSB Eastleigh
Sorting code: 30-92-94
Account number: 02252685

Bank Transfer from outside the UK:

IBAN: GB63 Loyd 3092 9402 2526 85
BIC/SWIFT: LOYDGB21209

Cheque:

Write Gut Projects Fund on the back to specify this fund.

Send cheques payable to Invest in ME to:

Invest in ME
PO Box 561
Eastleigh
Hampshire
SO50 0GQ

Paypal:

Click here – http://bit.ly/29yC8gz

Download a Gift Aid form (UK tax-payers).

Full info, FAQs, News, Donate – on Invest in ME website.

Thank you for your support!

£175k

(last updated August 2016)

February Updates

feb updates
Short month – long list of great news!

The Quadram Institute is the name of the new centre for food and health research to be located at the heart of the Norwich Research Park, one of Europe’s largest single-site concentrations of research in food, health and environmental sciences. It is to be led by the current Director of the Institute of Food Research, Professor Ian Charles. He opened last year’s Invest in ME conference in London and was very supportive of the idea of a centre of excellence for ME to be within this new Institute. Building of the new £81.6m facility began in February, with an anticipated opening in 2018.

This is encouraging news, as our campaign was created to support the proposal by the UK charity Invest in ME (now also known as Invest in ME Research) to establish a Centre of Excellence for ME, based at world-renowned Norwich Research Park. We set out to help raise funds for the biomedical research aimed at developing diagnostic tests and treatments for ME (myalgic encephalomyelitis).

The focus of the Invest in ME Research strategy is on the role of infection and the immune system, including autoimmunity, whereby the immune system attacks the body’s own cells or tissues. The research began with the gut, as that is the site of most of the body’s immune system. The foundation study is looking at whether gut hyperpermeability (leaky gut) plays a role in this illness.

Meanwhile, clinical trials in Norway, presented and discussed at the annual Invest in ME Conference events, showed promise of rituximab, a drug used in blood cancer therapy, rheumatoid arthritis and some other autoimmune diseases. The charity decided to organise a UK clinical trial of rituximab, starting by studying B-cells in ME patients. The first paper from this research was published in February in the journal Clinical & Experimental Immunology. Click here to read more. So February was an exciting month for Invest in ME Centre of Excellence projects.

Also in the news (full story to follow shortly) was little star Makayla Nunn, as a result of her amazing efforts for ME Awareness and achievement as one of the top fundraisers on JustGiving. Makayla has more plans for this year and has set up her 2016 fundraising page here – https://www.justgiving.com/Makayla-Nunn/

Stacy Hart held another of her fun competitions on our Facebook page to help raise awareness of our cause, but has had a rough start to the year and is not currently posting online, so we miss her Friday column at the Watford Observer. Thinking of you Stacy, and looking forward to having you back online with us soon.

Becca Hams & Ali Head ran another successful Secret Valentine. If you missed out .. sshh .. click here to join in Secret Easter 2016.

Joe Jarvis got started on four whole weeks with no added sugar to support his friend with ME, Simone. Read his sweet story here – https://www.justgiving.com/joeaddedsugar/

Jane Hurst was pleased to report that the total raised in 2015 by sales of her photocards and handmade cards was an amazing £606.22. (£175 of this – 50% of photocard sales will go to The 25% ME Group). Making cards is becoming increasingly difficult for Jane (vertigo, ever-present severe gut pain & other nasty symptoms of severe ME) but she usually has enough for 2 sales at Budgens each year, and their local Farm Shop sell her Easter cards and Xmas cards. Both have been great – so supportive. Jane’s Mum, Dad and brother take the card sales in shifts and Jane gets to count the money up when they return! After a sale in February, O’Flynns Budgens of Poringland commented on our Facebook page, “We received alot of positive comments from our customers about the day and we’re looking forward to next one already”. How lovely!

Catch up with 28 EU Marathons Man Mike Harley on Facebook here –
https://www.facebook.com/mikeseumarathons

Our gratitude to Elaine English for embarking on a marathon of different kind – 1 blog per day for 27 days – to support Invest in ME Research & Macmillan Cancer Support. Catch up & follow here – http://elaineongratitude.blogspot.fr/

In training (ahem) for their Kilimanjaro Climb in March, Amanda & Richard hosted a wine tasting competition among 90 guests and raising an intoxicating £1470. Cheers everyone! Click here to see the excellent flyer they produced to help their sponsors to learn more about the illness they are so kindly supporting, and their fundraising page is here – https://www.justgiving.com/amandakayes/ Blog here.

Teresa Greenwood plans to give away seeds in return for donations to Invest in ME. Sow nice! Add yourself to the facebook group for more details on how to join in Seeds for ME: https://www.facebook.com/groups/475463279310844/ 

Calling Caterham .. to Joanna and her Vintage Violets Charity Catwalk for Invest in ME on Saturday evening, 2nd April. Click here for details –
https://www.eventbrite.co.uk/e/joanna-and-her-vintage-violets-charity-catwalk-tickets-21404430227

Comedian Chris Brooker shows he is serious about raising awareness & funds for Invest in ME Research, by organising a Comedy Night for the second year running. Details on facebook here – https://www.facebook.com/events/1046977471989083/

Kayleigh Kavanagh hopes to raise money for Invest in ME biomedical research funds by giving pieces of jewellery for specific amounts of donations (plus p&p) during May. She has created an event page for Facebook friends and will be setting up a page for donations nearer the time.

Ian Peters has set up his fundraising page for the Chester Half Marathon in May – https://www.justgiving.com/Ian-Peters5/

Thomas Waller has had ME for 5 years since the age of 11. He is taking part in Walk for ME 2016 and his page is here – https://www.justgiving.com/Caroline-Waller5/

Mandy Stephenson is doing Walk for ME 2016 as her 15 year old daughter Katie has had ME for over 3 years. Thank you for reading her story here – https://www.justgiving.com/Mandy-StephensonWalkForME2016

Invest in ME Conference Events span the beginning of June – keep up to date with news here – http://www.investinme.eu/IIMEC11-news.shtml

Latest totals for Invest in ME Research Funds ..

£476k raised of £520k target for the B-cell / Rituximab Research

£164k raised of £200k target for the Gut Microbiome in ME Research

As ever, if we’ve missed anything, or if you would like us to highlight your event, write a guest blog, or have any questions, please contact us here, or find us on Facebook or Twitter. Well done everyone and thank you all so much for your support!

Thank You