January Updates

Big thanks to all involved in a superb start to the year and planning ways to support Invest in ME Research in the year ahead. Our patient-driven community campaign in support of this volunteer-run charity is totally inclusive of all ages and levels of severity of the illness Myalgic Encephalomyelitis (ME) and we really appreciate all the various ways you choose to support the progressive work of this small charity’s big cause.

With her writer’s hat firmly in place, Stacy Hart published her Friday column in the Watford Observer on New Year’s Day, and including this message from Invest in ME ..

French Author Voltaire  once wrote that optimism is the madness of insisting that all is well when we are miserable.

Yet Invest in ME (IiME) is optimistic that we and our big hearted supporters can build on our achievements from the past year, and all the work over the past ten years, and consolidate the foundation of research that we have which can finally treat myalgic encephalomyelitis (ME) and give people their lives back.

We are pleased to see that more and more ME is being talked about outside the usual ME circles – and in a positive way too.

Patients themselves are driving change.

In 2016 Invest in ME will focus on European collaboration and the establishment of a centre of excellence – and with just a little more support we can make this a reality.

We look forward to Dr Ian Gibson’s book – ‘Science, Politics and ME’.
In 2016 we hold the eleventh public International ME Conference and the sixth two-day International ME Research Colloquium – both in London in June.

At the time when the  NHS is being stretched to its limits it is even more important than before that ME patients can take part in shaping their own future.

Things won’t change overnight but good foundations are being built with the help of Invest in ME supporters who are selfless and resilient.

If optimism is madness then for 2016 we choose madness, we choose optimism, we choose progress.

We welcome 2016 and promise to work for the benefit of patients.

Bring it on.   Happy New Year to everyone.

As a music artist, Stacy goes by the name of Mama Chill. She interviewed fellow musician Skopje in January, reprinted here on our blog with their kind permission.

Vyvyan Weltiner, of Galderma in Clarendon Road, Watford, contacted Stacy to say that, having followed her Watford Observer column, they have chosen Invest in ME, along with The MS Society, to each receive a £750 donation from selling their old office equipment.

Tony Bradstock posted that the charity collection box at Coffee Cloud at Dickens Heath in Solihull had been emptied and that the money would be on its way to Invest in ME.

Joan McParland announced that 73 Northern Ireland branches of Boots Pharmacy would be receiving the Invest in ME Matchstick Campaign brochures in an information pack. You can read more in our January update on the Matchstick Campaign.

Sinéad Kearns decided to do Dry January for Invest in ME to show support for the upcoming Kilimnajaro Climb being done by Richard Pughe and Amanda Kayes in March. That’s not all they have planned for the year ahead, so watch this space for more news.

It’s really lovely to see supporters following on their support of Invest in ME with more events for 2016, as well as welcoming newcomers to the cause.

Walk for ME 2016 was launched in preparation for ME Awareness Week in May, and is again supporting Invest in ME. A few fundraising pages have been set up already, such as by Rachel Green & Chris, Jacqui Redmond, and Ellan Brown.

Having done a Reservoir Walk for ME last year, Amanda Buckley is doing a sponsored swim with her friend Rachael in May.

After their cycle ride for Invest in ME last year, Ash & Rob are doing a triathlon in May.

Ian Potter is once again doing a half-marathon along Hadrian’s Wall for Invest in ME, and for Sheffield Hospitals Charity and The Cystic Fibrosis Trust.

Mike Sutton is doing a Long Walk along the Camino de Santiago for Invest in ME as his friend Joel has ME. He raised an amazing £1000 in the first 24 hours of setting up his fundraising page, and matched that with another £1000. His new target is £3000. He wrote on his blog, “To say I’m blown away is an understatement – I was thrilled to tears – sobbing as I read the messages of support and having my faith in humanity rekindled to a blaze. Thank you so very much.”

Jo Smith has set herself a target to raise £500 for Invest in ME in 2016 by organising various things throughout the year and has set up a fundraising page.

Young Makayla Nunn has her sights set on raising yet more awareness and funds for Invest in ME, building on from her tremendous efforts and enthusiasm last year.

If you or anyone you know collects their loose change and would like to use it to support Invest in ME, Sue Page has extended ‘Small Change to Change ME’ for another year, on JustGiving and Facebook.

We updated our page on The Big Sleep for ME for May Awareness 2016.

28 EU Marathon Man, Mike Harley, posted his January Update, including a big shout to Tony Bradstock for creating a widely appealing promo picture, and for the 11th Invest in ME Conference (IIMEC11) in June 2016.

Alison Orr invited others to join her in setting up a shop on Phoenix Trading with profits to Invest in ME. Buying quality cards & stationery from her shop Cards for Invest in ME is a nice and easy way to generate donations to the charity at any time of the year.

Becca Hams & Ali Head got busy organising Secret Valentine 2016. The closing date is 2nd February, so don’t delay if you’d like to take part. Never forgetting our furry, feathered or scaly friends, this year there is also a Secret Valentine for Pets!

Looking for a Valentine’s gift for a loved one or to treat yourself?
Lynne Allan sells lovely hand-crafted jewellery online from her shop ME2UDezignz on Etsy, with donations to Invest in ME.

Click here for other ways to generate donations at no extra cost to you.

Spreadshirt has an offer of free delivery on orders of 2 or more items, ending 3rd February, using the coupon code: Coupon Code: 2LOVE

Seller profit from the whole range of products in all our shops below go directly to Invest in ME Research.

Let’s Do It for ME – 
http://shop.spreadshirt.co.uk/ldifme

Let’s Do It for ME Design Your Own – 
http://designerme.spreadshirt.co.uk

Invest in ME Charity logo products – 
http://653855.spreadshirt.co.uk

Make ME / Hug ME – 
http://makemecrafts.spreadshirt.co.uk

The Big Sleep for ME – 
http://thebigsleepforme.spreadshirt.co.uk

Stacy Hart is generously hosting another of her legendary competitions on our Facebook page, just for fun and to help raise awareness of our cause for Invest in ME.
Closes 3rd February.

Thank you for the direct donations in January to our crowdfunding for the Invest in ME Research on the role of the Gut Microbiome and B-cells/Rituximab.

Phew, what a start to the year!
Have we missed anything out?
Would you like us to feature your plans for 2016 or write a guest post for our blog?
Let us know in the comments or email us at fundraising4me@gmail.com or contact the charity Invest in ME (Research) directly at info@investinme.org
Enter your email address below to receive our blog updates direct to your inbox.
Thanks so much for your support. Let’s make it a fabulous February!

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(Click here for our review of 2015)

1st December – Giving Tuesday

1753a_gt2015_socialmedia_facebook-heart-hands-1

Giving Tuesday is a growing worldwide movement. Please support our cause on this International Day of Giving. You can give your voice, your time, or a donation to Invest in ME Research. Donations to the charity may be made online, by text, by PayPal, Bank Transfer, Cheque. You can donate to a specific project or to the general Biomedical Research Fund. Every £1 counts at Invest in ME Research – the small charity run entirely by volunteers making great progress.

Gift Aid is an extra 25% of your donation from the government if you are a UK tax-payer, so please tick the Gift Aid box when you donate if this applies to you.

WAYS TO DONATE ON GIVING TUESDAY

JustTextGiving (UK)

Text APFR99

£1-£5 or £10

to 70070

You can add your name and Gift Aid if eligible by text.

JustGiving
(any country, any amount from £2)

One Day – One Pound
(text donations add to the total raised on this page).

PayPal

To: paypal@investinme.org

Bank Transfer

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

Send cheques payable to ‘Invest in ME’ to:

Invest in ME
PO Box 561,
Eastleigh,
Hampshire,
SO50 0GQ

(add Gift Aid to your donation with Invest in ME’s Gift Aid form)



Please help spread the word ..

Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by independent UK charity Invest in ME (Research) to establish a centre of excellence for translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe and in collaboration with other leading UK and international biomedical researchers.

We help to raise funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding in their development of the centre of excellence. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have now helped to raise over £600,000 for the IIME Research strategy to develop and are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. Two major research projects are on the role of the gut microbiome and research on B-cells leading to a UK clinical treatment trial of rituximab.

Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.

Thank you for your support.

Let’s Do It for ME!
ldifme.org

in support of Invest in ME (Research)
investinme.org

Invest in ME International Conference & Biomedical Researchers Colloquium
investinme.eu

IIME B-cell / Rituximab Research
ukrituximabtrial.org

1753a_gt2015_socialmedia_facebook-give-dice

One Day

Over £600k on Our Way to a Million!

A winning combination of philanthropy and proactive patient power has sped us past the £600,000 milestone on the way to our fundraising target of £1,000,000 for the charity Invest in ME Research biomedical research strategy.

Invest in ME Research announced that the Hendrie Foundation has kindly increased their funding pledge to the charity’s B-cell / Rituximab Research Fund by a further £50,000 to a total of £275,000 pledged.

Together with recent donations, including £10,000 from a sponsor wishing to remain anonymous, this generous gesture takes the current total raised by our community crowdfunding campaign to well over £600,000 and rising.

The Invest in ME Research Centre of Excellence translational biomedical research is designed to establish reliable diagnostic tests and effective treatments for myalgic encephalomyelitis (ME) to benefit patients and doctors alike.

Two current major research projects are: the role of the gut microbiome in ME at IFR/UEA; and the role of B-cells in ME at UCL, adding value to the current Phase 3 multi-centre clinical trial of rituximab in ME patients in Norway and leading to a UK clinical trial of rituximab in Norwich (Invest in ME Research update here).

Both projects include progressive national and international collaboration with clinicians and scientists involved in biomedical research. This collaboration is ongoing and facilitated by the Invest in ME Conference (IIMEC) and Biomedical Researchers into ME Colloquium (BRMEC).

If you already help to raise funds for this vital research strategy then we cannot thank you enough. We have long-term and severe ME and we are intent on helping Invest in ME Research to change the landscape of diagnosis and treatment of this disease for the next generation, as well as maintaining realistic hope for our own futures, thanks to their extraordinary vision and work.

If you are new to our site, then we extend a warm welcome and invite you to join us in our proactive support of Invest in ME Research charity’s work on establishing a Centre of Excellence for ME – the first of its kind in UK/Europe and with national and international collaboration. This is urgent and vital work.

The charity itself is run by dedicated volunteers working in their own time and without pay. Funds we raise are for their biomedical research strategy.

Please browse our site to find a number of ways you can help raise funds for the charity at no extra cost to yourself, such as using a referral link or cash-back site when shopping online, buying cards and gifts from supporters donating full or part profits to Invest in ME, braving the heat of the Chilli M.E. Challenge, or being sponsored for anything from going Facebook-free to climbing Kilimanjaro.

You can subscribe to our blog to receive updates by email. Contact us if you’d like to write a guest blog. Recent posts are also featured in our news stream.

Thank you for your support!

Prof-£600k

Further reading on our site:

March on a Million

IIME Research on Gut Microbiome

IIME Research on B-cells / Rituximab

IIME Conference & Colloquium

IIME Centre of Excellence

December Updates

Total Raised so far – £73k!

 
*  We do hope you able are able to enjoy the best of the festive season this year. 

*  Thanks to the help and hard work of so many wonderful supporters, we are now over 70% on the way to the £100k target!

 *  Who could resist our adorable little LDIFME Teds all dressed up for winter – limited stock of this exclusive design. Handmade tug toys for your canine friends are also available. Click here for details of Teds and Tugs – many thanks to Annabel Luery!

*  Jane Hurst’s Photocards make great gifts all year round: “Hi, We have put together some more photo cards. All photos featured were taken by friends and family all of whom, like myself have ME. The cards are printed on quality card and make lovely gifts, Thank You Notes, birthday cards etc. They are sold in aid of Invest In ME and The 25% ME Group. Cost is £3.99 per pack of 5 or £1 each. Postage is 75p per pack. You can pay by cheque or Paypal, just PM me for more details. Thanks ever so much.”
Pack 1
http://www.facebook.com/media/set/?set=a.156767279186.145229.639834186&type=3
Pack 2
http://www.facebook.com/#!/media/set/?set=a.156759794186.145225.639834186&type=3

*  If you have any friends or relatives who would kindly take a charity collection box to work or host a coffee and mince pie morning or New Year Party or have other ideas to support us by raising awareness and a few extra £1s during the festive season, that would be wonderful.

*  Invest in ME placed another advertisement in London Business Matters for December and January, in time for Christmas and New Year.  The ad highlights one of the research projects that we are helping to raise funds for. The ad first appeared in October and this time it is supplemented with an “editorial” piece about ME featuring Rosa’s 21st Birthday Appeal.  Click here for details.

*  The Invest in ME elves have been snowed under, busily packaging the superb Christmas cards and 2013 calendar, produced by Let’s Do It for ME supporters, and posting them out across the globe. The cards include a message about Invest in ME and Let’s Do It for ME on the back and the A5 size is handy if you want to include an IiME or LDIFME leaflet as a bit of extra ME awareness-raising, and also guarantees that they will be noticed when on display. The calendar has a factual quote about ME at the foot of each page to keep awareness going throughout the year and so would make an ideal gift to be displayed at your health clinic or elsewhere on public view, and why not send a card to your health professionals and local MP too? Many thanks to all involved in the Christmas card photo competition and contributors to the calendar, with special thanks to Julia Cottam for all her hard work on organising and coordinating the cards and calendar project. Click here to order – repeat orders are coming in as people are so pleased with the quality.

*  To see the wide range of other cards, decorations, and gifts produced in aid of our worthy cause, please see the Christmas Shop on our sparkly new website created over several months by Let’s Do It for ME campaign co-founder, Jan Laverick. Links on the page include the gifted supporters who make up the ever-expanding team of crafters of all ages, led by Jon Watson. The more the merrier so please contact us or Jon if you would like to join in. Jon has also been running Make ME Crafts stalls at local events and the last before Christmas was on Saturday 15th December 2012 from 09:00 – 17:30 at Love Southsea Christmas Market, Palmerston Road in Portsmouth. Jon’s ingenuity, hard work and unfailing enthusiasm is truly inspiring and we are really grateful to all who support his efforts, and those of the rest of the team.

*  The 1st of the month is the day on which we hope that as many supporters as possible will take us a few steps closer to our goal by donating just £1.  What a great way to herald in the New Year by inviting your friends and family to join this event on 1st January.  Every £1 counts so please share the link to the One Day – One Pound page widely as it is a monthly event and will continue throughout the coming year.

*  November saw the release of not one, but two, brilliant audio plays with all those involved in both projects having generously donated their time and talents so that every penny of the proceeds go to Invest in ME! Writers Jac Rayner and Barnaby Eaton-Jones are both members of the Let’s Do It for ME team and were the instigators of these projects in aid of Invest in ME. We are quite simply blown away by the extraordinary kindness and support they have received and we cannot thank them and their fabulous friends and supporters enough for their amazing dedication to the spirit of our campaign. You can find out “who’s Who” and more besides about the Big Finish audio download “Bernice Summerfield: Many Happy Returns” on our website here, and about Barnaby’s audio play “Running To Stand Still” here. Jac also ran a competition for extra ME awareness-raising, which closed on 5th Dec. Details on her blog here.

*  1st November marked two years since the lifetime ban on blood donation by anyone who has had ME and the brilliant ME Awareness track “I Can’t Stand Tha Rain” by Mama Chill and featured on our website here, raised £50 for a Halloween event, many thanks to Mama Chill, aka Stacy Hart! 

*  Young Harrrison Honey got November off to a great start by creating his Just Giving page. He wrote, “Although it has been a year since I was in hospital due to M.E. I am still struggling with this awful misunderstood illness. I am still not in school and I want my life back as I knew it. I know many other children who are suffering with this illness too and I am in touch with them. They are also missing out on so many things like me. This is such a great cause, raising money to find a cure!!” We loved his update, “OMG, Speechless. After only the 2nd day of advertising my page I have already reached my target !!!! I have increased this now to £300 (double what I had originally hoped for). Thank you to everyone who has donated already. Harri =) Do take a look at his page here to see his latest update and the amazing amount he has been raising. Well done to Harri and many thanks to all his supporters and more news to come!

*  Young Maddi Kent and her wonderful family previously featured in a Make ME Crafts blog and have now raised over £1,000 including Gift Aid, through “Maddison’s Bracelets”. We were deeply saddened and shocked to hear that the family has been struck by tragedy. Tristi posted this message on the Invest in ME Facebook group, “ just a quick message for those of you that havent heard. my eldest daughter (Maddi’s elder sister) was on the pavement and hit by a drunk driver just over 2 weeks ago and had to have her leg amputated. hence things have been awful here and myself and maddi have had to put our ME fund raising on hold for now. when we can we will restart. in the meantime everyone keep up the amazing work you have been doing 🙂 xxxxxxxxx” Our love and thoughts are with the family at this difficult time.

*  As said above, November also marked the 21st birthday of Rosa Amor. Severely ill and currently in a nursing home being fed by tube, Rosa was unable to celebrate in the usual ways that others of her age might, so instead she chose to use her special day to raise awareness and funds for the cause so close to her heart. We wrote about Rosa’s 21st Birthday here – now updated as Rosa’s Appeal is featured in an “editorial” piece about ME accompanying an ad by Invest in ME in London Business Matters magazine.  Rosa’s Appeal is also in pdf here. The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa’s appeal and thanks to the support and generosity of a number of people, over £1600 was raised on the Just Giving page including Gift Aid. Goodwill messages were posted across the social networking sites and some people used Rosa’s photo as their profile picture for the day. Her mother Julia said, “Rosa’s Appeal has surpassed all our expectations. Check out the link to see her amazing total and all the different people who have supported her. We are so grateful to everyone.” Many thanks to Rosa and her family for their staunch support in helping to make hope a reality.

*  The above are some examples of all the amazing efforts to support our campaign, please email us at fundraising4me@gmail.com if you would like yours to be added and do keep checking as we hope to add news as it comes in throughout the month and to make our summary of updates a monthly feature. For all information about the Let’s Do It for ME campaign for Invest in ME, please see the main website and especially the Christmas Shop page! Thank you so much for your support – Let’s Do It for ME!

*Everyone at Invest in ME perfoms the charity’s work for free and all involved in the Let’s Do It for ME campaign are also volunteers, either with ME themselves or parents/carers or generous supporters, giving their time, talents and their own money to support this vital cause*