To begin by expressing congratulations and thanks to everyone for making 2015 another amazing year in support of the progressive work of the charity Invest in ME (Research) towards establishing diagnostic tests and medical treatments for ME (myalgic encephalomyeltis) and proper recognition of this disease by public services. Supporters from across the globe went to the ends of the earth in their efforts during the year, literally in the case of Mike Shepherd, whose daughter has ME, with his epic journey to run a full marathon at the North Pole.
Below is just a snapshot of all the awareness and fundraising activity and Invest in ME Research Developments in 2015 and we’ll follow up soon with some separate updates and details of ways you can join in the fun for our serious cause in 2016.
Awareness & Fundraising Review of 2015
A whole host of friends, family, and carers of people with ME gave up treats for the New Year–New ME fundraiser, Dry January, and later in the year, Stoptober for ME and Give It Uptober, as well as dedicating their birthdays and Christmas gifts or cards as donations to Invest in ME. Supporters continued collecting their ‘small change to change ME‘ throughout the year, donated £1 or more on the 1st of the month, hosted a Open Days and Tea for ME, sold their lovingly handmade wares through Make ME Crafts, sold items on eBay, had fun doing the Picture Quiz, ran sweepstakes and exchanged gifts in the Secret Series (Secret Santa, Valentine, Easter). Alison Orr set up a Phoenix Trading online shop with profits to ME. Tom Reeves skated across Switzerland. 69 year old Kate Hart climbed Kilimanjaro. Ati O went the extra mile for Walk for ME, running in Paris, London, Kuala Lumpur, Putrajaya, donating £1 per kilometer herself as well as being sponsored. Mike Harley embarked on his 28 EU Marathons, running in Prague, Helsinki and Ireland. Others ran marathons across UK, and did cycle rides, sky dives, Tough Mudder, Man vs Mountain, Teddy Bears Picnics. Four-legged friends joined those on two legs and in wheelchairs to support Invest in ME in Walk for ME and The Big Sleep for ME. Supporters dressed up as Princesses, including Michael Dickinson in memory of his late father Allan, blogged during May Month of Awareness, cooked up a storm to celebrate the 10th Invest in ME Conference with Cordon Bleu for ME, held stalls at local events, cut their hair, shaved their heads, or grew facial hair for Movember. 11 year old Makayla Nunn was among the top 3% of 2015 fundraisers on JustGiving, and Sophie Tennent’s Fun Weekend and Race Night raised £5611.
Many of our friends were too ill to be online in 2015 and if they are able to read this, we are wishing you better health this year. Rosa Amor decided to do a sponsored Listenathon, as listening to audio books for a few minutes each morning and cuddling her guinea pig for a while each evening is the only activity she can do while still very severely ill, bedbound and tube-fed.
Donations were received during the year from more patient organisations beyond UK, such as Sweden and Ireland; from students at Wadham College Oxford; and from the staff of ADLIB in Bristol and Uncle Bub’s BBQ in Illinois. The Hendrie Foundation pledged a further £50k to Invest in ME Research Funds and there were a number of generous anonymous matching donations from fundraisers’ friends. Invest in ME Research was again a winner in the Galaxy Hot Chocolate Fund in December thanks to supporters votes, and the Invest in ME Intercalating Medical Students in ME Research project was supported through the Big Give Christmas Challenge including Candis Magazine.
Celebrity Specials included a Comedy Night in Manchester hosted by Chris Brooker and inspired by Luke Remnant’s Walk for ME. Interviews and videos by professional storyteller Chip Colqohoun were posted on his youtube channel The Graticast. Paul Kayes was over the moon to see Sophie Tennant pictured for ME Awareness with Robbie Fowler and Liverpool’s Player of the Year, Philippe Coutinho. Actor Jon Campling waved his Invest in ME collection box along with his lovely hand-made wands at Comic Con events. Supporters of the funtastic Chilli ME Challenge included Ruby Wax, Helen Lederer, Jennie Eclair, John ‘Boycie’ Challis, an outstanding performance by music artist Mama Chill (one of ten celebrities with ME featured by the American company Pro-Health in 2014) and many other celebrity sports bravely accepting the challenge of chomping chillies to help raise awareness and funds for biomedical ME research, not to mention the stars of Institute of Food Research team, working on the IIME gut in ME research. Writer Barnaby Eaton-Jones published a new book, Tales of the Female Perspective, with all profit to Invest in ME. Friends of writer Sue Stern, whose son has ME, donated to celebrate her Golden Wedding Anniversary. Stuart Murdoch of Belle and Sebastian supported our Movember awareness of men with ME. German artist Wolfgang Stiller generously agreed to Janet Smart’s request for images of his work to be used by Invest in ME for the informative and thought-provoking Matchstick Campaign for ME Awareness. The poster designs and slogans were a team effort by members of the Let’s Do It for ME planning group and the charity provided informative content for the brochures. With her Runnin On Empty writer’s hat on and showing her true trouper colours, Mama Chill (Stacy Hart) brought a year of sterling support to a close and saw in the new year by publishing her weekly Watford Observer column on Christmas Day and New Year’s Day, relaying messages from Invest in ME on both days.
Media – a number of supporters were interviewed for local or regional radio and featured in national press, including 8 year old ME sufferer, Kaylah Davies, who had joined Makayla Nunn and teenager Marie Edes in doing a Horse Walk for ME in May. Our crowdfunding campaign was featured by BBC Look East in May in their report on the gut microbiome research at Norwich Research Park. Thanks to everyone willing to share their stories, and to all those journalists and their editors and producers bringing those stories to a wider public. We really appreciate your commitment and courage in a climate of such misunderstanding and misinformation in the media about ME. Our hearts go out to John Darvall of BBC Radio Bristol, whose eldest daughter Polly died in a car crash on 31st October. In a further tragic twist, highlighting the importance of high professional standards in journalism, John suffered consequences of careless reporting of Polly’s death, which he wrote about in his blog. John had come to our attention this year by interviewing Naomi Whittingham (whose story of severe ME since childhood is featured in Lost Voices and Voices from the Shadows) and Mike Harley (whose friend Ian has ME) and also gamely accepting the Chilli ME Challenge. Sadly, Diane also lost her daughter Lili, whose severe ME she had described in the moving Carer’s Story that she shared with Invest in ME in 2013.
Invest in ME announced in February that £500k had been raised or pledged for their biomedical research funds since the Let’s Do It for ME campaign was launched in July 2011 to support Invest in ME charity’s plans to establish a centre of excellence for ME, and we are aiming to reach a million. This is no mean feat from our homes and beds, so we cannot sufficiently express how much we need and appreciate philanthropy and the support of our ‘willing wellies’ – friends, family and supporters willing and well enough to help raise awareness and funds in whatever way. THANK YOU ALL SO MUCH!
Invest in ME were invited to give a talk at a half day Social Media conference in Norwich organised by the Institute of Food Research in December. They said they were proud to be able to present all the positive and proactive actions and events that Let’s Do It for ME has been able to initiate and promote in collaboration with the charity. Well done and huge thanks again to Invest in ME Research and everyone supporting and enabling their progressive work. We began 2015 by saying ‘LET’S BE SEEN IN 2015’. The charity and supporters rose to the challenge. Let’s Do It for ME again in 2016.
To quote one of the Matchstick Campaign posters
*TOGETHER WE WILL FIND A CURE*
Invest in ME Research Developments in 2015
The year began with an interesting article, giving his perspective as a young researcher new to the field, by Fane Mensah, the PhD student working at University College London (UCL) on the B-cell in ME research with Dr. Jo Cambridge. Fane went on to be entered for the IIT early career researcher poster competition, open to all microbiology projects at UCL, and was one of the three winners. Invest in ME wrote that winning the poster competition was extremely important and encouraging for Fane and for the ME cause, as the message that research into ME is now a mainstream activity is now known across the UCL medical departments, and his enthusiasm is creating enormous awareness of ME in the academic research community. Subsequently, Fane was also invited to give a talk to young scientist meeting at GlaxoSmithKline, Royal Free and UCL postgraduate day, and gave a poster presentation at the European Congress of Immunology in Vienna, creating a great deal of interest toward this project, and at a biomedical research meeting at Norwich Research Park in October, joining Dr. Mady Hornig of Columbia University’s Mailman School of Public Health, whose research hit the headlines when a paper published in February showed that her team had found important differences in immune system markers in patients of shorter or longer illness duration, which has implications for which type of treatments may be helpful at different stages of the illness.
Fane’s project was “Extended B-cell phenotype in Myalgic encephalomyelitis/Chronic Fatigue Syndrome: a cross sectional study”. The final paper on the study was published online in December. This was the B-cell study, 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). The UCL team used techniques that showed subtle differences between the samples from ME patients and healthy controls. It is not yet clear why B cells are not behaving normally in a subset of ME patients, but it was decided early on to extend this research, and the UCL team shares the benefit with other researchers working on this in Germany, Spain, Sweden and Norway, of meeting together to discuss their results and how to find ways to make their findings reproducible. This is exactly the type of purposeful collaboration that Invest in ME Research set out to achieve.
The team at Norwich Research Park (Institute of Food Research and University of East Anglia) embarked on collecting blood and stool samples from patients and healthy controls for the foundation study on the role of the gut microbiome in ME. This involves assessing the samples for evidence of gut hyperpermeability in ME, by detecting the presence of microbes that may have ‘leaked’ from inside the gut into the general blood circulation. This was featured by BBC Look East in May and the team took on the heat of the Chilli ME Challenge in July.
Updates on the Invest in ME centre of excellence research projects were presented and discussed at the charity’s international events in London in May – the 5th Biomedical Researchers into ME Colloquium and 10th Invest in ME Conference. Dr. Leonard Jason of the Centre for Community Research at De Paul University in Chicago kindly wrote an article about Invest in ME. Professor Ian Charles, recently appointed to lead the programme to develop the UK’s new Centre for Food & Health to be based at Norwich Research Park, gave the keynote speech; joining Professor Simon Carding and Dr. Jo Cambridge, respectively leading the IIME gut microbiome and B-cell research; Dr. Amolak Bansal, whose patients are among those providing samples for the research; and the ‘next generation’ PhD and medical students, Daniel Vipond, Fane Mensah, Navena Navaneetharaja and Bharat Harbham. Navena spent over three months at Cornell University in New York with Professor Maureen Hanson. Bharat has been working under the guidance of Professor Angela Vincent in Oxford. It was an exciting year for biomedical research, and all of this was included either pre or post publication at the Invest in ME Conference events. Links to the full 2015 IIME Conference Report, Journal and DVD are on the IIME Conference site along with those resources from the past 10 years of international biomedical research into ME and details of the 2016 Conference & Colloquium.
Professor Maureen Hanson received a share of $1.3m for her research from the American National Institutes of Health (NIH) in 2015, along with Drs. Ian Lipkin and Mady Hornig, Nancy Klimas. In January, Invest in ME had submitted their response to the NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, and and invited NIH to be represented at the 2-day Invest in ME Biomedical Researchers into ME Colloquium in London to join the charity’s international collaborative effort to resolve this illness. Another landmark report was published in February by the Institute of Medicine (IOM), “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”. Invest in ME’s response is here. The IOM report was downloaded 9233 times in 2015. In October, NIH announced that responsibility for ME/CFS research had been moved Office of Women’s Health to the National Institute for Neurological Diseases and Strokes.
Invest in ME is a founder member and current Chair of the European ME Alliance, an umbrella organisation of 13 European national ME patient organisations, which joined the European Federation of Neurologcal Associations in June, and also formed a European ME Research Group, which met for the first time in October. The two-day meeting was attended by clinicians and charity representatives from eight European countries. It was chaired by by Professor Simon Carding, and facilitated by Invest in ME. International collaboration has been high on the agenda of Invest in ME since they registered as a charity in 2006, as may be seen by their annual conference events, and this new group will strengthen this collaboration on a pan-European level, bringing more opportunities for progress and funding for biomedical research in their quest to establish reliable tests and effective treatments for ME over the next few years.
If you would like to support our cause this year, please have a browse of our site for various ways to help raise awareness and funds for free, such as when shopping online, and do let us know if you have any ideas or questions. You can email us at email@example.com or contact Invest in ME Research directly at firstname.lastname@example.org or via their websites (links below).
Happy New Year everyone and Happy 10th Year to Invest in ME Research!
We’ll write more soon. Meanwhile, to simply donate to the charity ..
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
Payable to ‘Invest in ME’ to:
Invest in ME PO Box 561,
UK tax-payers can add Gift Aid to donations – Invest in ME Gift Aid form
JustGiving – justgiving.com/investinm-e
JustTextGiving (UK) Text: IBRF33 £1-£5 or £10 to 70070
IIME Gut Microbiome Research
IIME B-cell / Rituximab Research