Merry Christmas!

With best wishes and many thanks to everyone supporting our fundraising for the
Invest in ME Research Christmas / New Year Funding Appeal.

As the charity explains on Day 24 of their Advent Calendar for ME the main objective of the appeal is to raise funds for another PhD studentship and further the development of A Centre of Excellence for ME.

Merry Christmas everybody and thank you for supporting Invest in ME Research!

 

£200k target hit for IiMER Gut Microbiota Fund!

You’ve done it again!

We are pleased to announce that another target for our crowdfunding campaign for a strategy of biomedical research into ME has been reached.

This update to our gut microbiota and related projects fund being performed at the UK Centre of Excellence for ME hub in Norwich Research Park brings the total raised so far for projects there to £200,000.

The research found, funded and facilitated by Invest in ME Research is the result of dedicated, generous and determined supporters who have not just given money but, also huge amounts of time and effort toward helping us change the direction of research into ME in UK and Europe.

The latest target has allowed us to fund two PhD studentships currently undertaking research at the Centre of Excellence hub in Norwich Research Park and allowed us to decide to commit to the future funding of another PhD at the Centre.

Please click here for the full update by Invest in ME Research giving details of the latest study in the biomedical research programme and other projects related to the UK Centre of Excellence for ME, and a message to you from the charity’s Chairman Kathleen McCall: http://www.investinme.org/ce-news-1709-04.shtml

We supporters at Let’s Do It for ME would like to thank the Trustees and Scientific Advisory Board of Invest in ME Research for their vision and dedication, and everyone working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Our thanks to each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

Let’s keep doing it for ME!

We now have a fundraising page on BT MyDonate: https://mydonate.bt.com/fundraisers/fundraising4me1

£520k target hit for IiME Research Rituximab Fund!

You did it for ME! Let’s keep doing it! We supporters at Let’s Do It for ME would like to thank each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

We would of course, also like to thank the forward-thinking and incredibly hard-working Trustees and Scientific Advisory Board of Invest in ME Research and all the other volunteers and researchers working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Please click here to read the full update by Invest in ME Research, where you will also find info and links to the charity’s various other projects related to developing a UK Centre of Excellence for ME needing further funding, such as the Gut Microbiota Research, education for medical students and the charity’s international biomedical research conference events: http://www.investinme.org/ce-news-1708-01.shtml

We have reposted an extract below.

Well done everybody and thank you for your support!

Invest in ME Research has now reached the target set for the B-cell/rituximab fund.

This is another major target reached and is a wonderful achievement by dedicated supporters and friends across the world. The total of funds raised or pledged for B-cell/rituximab projects is £520,000.

From this the charity has already funded research at UCL, including a PhD student, and allowed strong collaboration to be formed with the researchers at Haukeland University Hospital in Bergen, Norway.

The initial preliminary B-cell study at UCL looked for likely responders and also introduced the UCL team to research into ME [1], leading to a UK rituximab trial.

This early work also created the foundations of close collaboration between the UK team and the Norwegian researchers at Haukeland University Hospital in Bergen.

This working collaboration and the work performed at UCL was credited as enormously valuable to the Norwegian rituimab trial work by one of the specialists there.

Once it became clear that a reorganisation at UCL would mean the UK trial could not take place there, and once it was decided that the trial could proceed at Norwich Research Park, then further collaboration was made and the Norwegian team visited Norwich in force in January 2017 to discuss with the UK team – UEA, IFR (now Quadram Institute Biosciences) and UCL – at the Centre there – click here.

As we now make preparations for the next phase, a new visit to Norwich is planned for when the Norwegian team break the codes for their Phase III trial later in 2017.

From the £520,000 raised Fane Mensah was also funded with a PhD grant to continue the B-cell research which is so important. This work was described here (click here).

Recently this work has been expanded thanks to a grant from Solve ME/CFS in USA which allowed Fane and Chris Armstrong to collaborate (click here).

Chris and Fane met when both were invited by IiMER to the sixth Biomedical Research into ME Colloquium (BRMEC6) in London in 2016. Dr Zaher Nahle from Solve was there also, and so another collaboration ensued. The work funded by IiMER has produced this paper from Fane and collaborators – Chronic fatigue syndrome and the immune system: Where are we now? [2]

Our initial target of £350,000 which was set with our advisor some years ago was reached and allowed the additional B-cell research to take place.

A position for a Senior Research Assistant to help with the UK trial is being advertised.

Our plans are to continue to raise funds for the UK Centre of Excellence for ME where international collaboration is a key concept.

We are pleased that Professor Ian Charles of Quadram Institute discussed the possibilities with the Centre in his keynote speech at the recent IIMEC12 International ME Conference in London (DVD available here). Professor Charles stated that he hoped “…they were being ambitious enough” for the Centre.

Our thanks to the wonderful supporters who are making it possible to apply high-quality science to looking for the cause(s) of this disease.

Our dedicated microsite for the UK rituximab trial and B-cell research has more details.

We are working on updating that site shortly and will include it in the Centre of Excellence microsite.

We will also be introducing a blog section which will allow the IiMER-funded researcher to interact more.

We hope to begin that soon – more details here.

Our mascot, Professor Let’s Do It for ME, was created by our supporters and indicates the B-cell/rituximab total – posters by LDIFME’s Jan Laverick.

Please help us by supporting our campaign for the
UK Centre of Excellence for ME.

Ways to help us are shown in the column at the right of our page.

References

1.
http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/pdf
2. https://www.researchgate.net/publication/316080804_Chronic_fatigue_syndrome_and_the_immune_system_Where_are_we_now
3.
http://investinme.org/ce-news-1702-01.shtml

Read more here: http://www.investinme.org/ce-news-1708-01.shtml

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)
 
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

running on empty

 

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