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Monthly Archives: February 2016

February Updates

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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

First Paper Published from IIME-funded Research

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Rituximab White

The first paper from Invest in ME-funded research has been published. This B-cell study was recommended by Invest in ME Research Advisor, Professor Jonathan Edwards, as part of the preliminary lab work prior to a UK clinical trial of B-cell depletion therapy (rituximab). It is an important step towards implementing the charity’s strategy of biomedical research and establishing a Centre of Excellence for ME research and treatment. An achievement that could not have happened without great supporters finding innovative ways to crowdfund, often with very limited physical and cognitive function – so thank you to everyone who has helped us get this far.

 

‘Extended B cell phenotype in patients with myalgic encephalomyelitis/chronic fatigue syndrome: a cross-sectional study’ has been published in an early view of the journal Clinical & Experimental Immunology. Preview link – here. An abstract – here.

When sharing the paper to their Facebook group IiME added:

[intense_blockquote border_color=”primary”]
“This is the first study in ME that used extended B cell surface markers and they tentatively found subgroups on the basis of B cell phenotype and illness duration. This work continues and is being done in close collaboration with the Norwegian researchers (in line with IiME’s ethos of international collaboration in research) to make the best use of resources and patient benefit.

We have asked the team to give a lay summary.”

[/intense_blockquote]
 

The latest news on the IiME-funded B-cell research and upcoming rituximab clinical trial is added to its dedicated website ukrituximabtrial.org then shared on our UK rituximab trial Facebook page before being shared on our social media sites more widely. Follow us on Facebook and Twitter to stay in touch. You may also wish to subscribe to our blog by email.


The amount raised for this research sits at £476,000 and our current goal is £520,000. Fundraising is still very much on-going and much needed. We hope the progress being made will help spread awareness of this research and inspire more fundraising events – do you know a willing wellie (well person) who is looking for a charity to support in an upcoming sponsored event? Let them know about us and how much fundraising for Invest in ME would mean to you.

Small one-off donations can be made quickly and simply by friends and family via text. You may wish to choose how you give to this research from the full range of options, including a monthly donation option, on the trial site here.

Rituximab Trial JustTextGiving
 

Help us March on A Million and kick-start biomedical research into ME. You can browse our recent event blog posts here. If you’d like to contribute a blog post contact us.

476k

January Updates

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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)