March Updates

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Invest in ME supporters made March another marvellous mixed bag of awareness & fundraising for the charity’s biomedical research funds for myalgic encephalomyelitis. Thank you each & every one!

Actor Jon Campling took along his Invest in ME charity collection box to another Comic Con event, this time in Oxford: “Huge Thanx 2 all who #rattledmybox” Next stop Scarborough!

Joe Jarvis and Kelly Samuels went sugar-free.

Elaine English completed her blog marathon for charity – 27 short blogs in 27 days on the theme of gratitude, and well worth a read if you missed them through the month.

Kirsty Rankin and Chris Dusgate kindly celebrated their birthdays by inviting donations to Invest in ME Research Funds, including a very generous £1200 to the Invest in ME Rituximab Trial Fund.

Amanda Kayes & Richard Pughe reached the summit of Kilimanjaro, raising over £9000 between them and a great deal of awareness. You can see their outstanding awareness flyer in our blog here.

Tanya Mawer published her plans for her 2016 Walk for ME. “Why do this? Because I WANT, NEED, to get better! I have cared for and watched my daughters suffer with this illness and now have it myself which is limiting my ability not only to care for them but also for myself. I have so many lists of plans I want to fulfill and can’t right now ~ hopefully with the research by Invest in ME I will be able to tick them off in the future. Til then it’s a case of life on hold.” Click here to read and share her full story.

Wonderful ‘willing wellie’ friend to people with ME, Mike Harley, published a great video answering questions on his 28 EU Marathons. He was also asked by The Guardian to write an article on his challenge, and to be a blogger for ‘The Running Bug’. His website URL is now .eu instead of .com. Do check it out and please share widely – http://www.mikeseumarathons.eu/

Makayla Nunn did the first of her 2016 Walks with the Animals .. with an alpaca!

Becca Hams & Ali Head organised a successful Secret Easter 2016 with donations to Invest in ME here. Becca also nominated Invest in ME for the Candis Charity Challenge 2016.

Brain Awareness Week saw the launch of Together Under the Umbrella, an initiative of the European Federation of Neurological Associations (EFNA) which the European ME Alliance (EMEA) joined in 2015. Invest in ME is a founder member and chair of EMEA. ME has been classified as a neurological disorder by the World Health Organisation since 1969. The ‘itis’ in Myalgic (muscle) Encephalomyelitis (inflammation in the brain and spinal cord) points to the immune response involved in ME. The focus of the Invest in ME Research strategy is the role of infection and the immune system, including autoimmunity, whereby the body attacks its own cells or tissues.

We were honoured to publish a guest post by American writer Stephanie Land, and her articles have also featured this month in The Huffington Post and Your Tango. Stephanie is determined to raise awareness since finding out about the severity of her friend’s illness, Myalgic Encephalomyelitis, more commonly called Chronic Fatigue Syndrome in USA, and by most international biomedical researchers as ME/CFS.

We saluted Kathleen McCall as one of the unsung heroes – always unselfish in her time for others, having started the charity Invest in ME, establishing the foundations for a proper strategy of research, and having continued all these years despite being severely affected with ME. A real inspiration on International Women’s Day. Click here to read her message for the 11th Invest in ME Conference June 2016.

Click here to see the new page we created to feature 2016 fundraisers. Whether you’re fundraising or spreading the word you’re helping to fund IiME’s game-changing strategy for biomedical research into ME – and we thank you!

What’s up in April?

Saturday 2nd at 18:30, Caterham, UK: Joanna and her Vintage Violets Charity Catwalk

Sunday 3rd, Thessaloniki, Greece: Mike Harley runs the International Alexander the Great Marathon.

Saturday 9th, Warwickshire, UK: Lee Taylor’s Spring Wolf Run 2016

9th & 10th, Scarborough, UK: Jon Campling at Sci-Fi Scarborough with his charity box for Invest in ME.

Latest totals for Invest in ME Research Funds ..

£480k raised of £520k target for the B-cell / Rituximab Research

£166k raised of £200k target for the Gut Microbiome in ME Research

Please feel free to contact us.

Thank you for your support!

February Updates

January Updates

In With the New

march updates

Tell-a-Friend TopCashback Bonus

The current TopCashback bonus for getting friends and family to sign up and use the UK’s highest paying money back site when shopping online is a generous £20. This offer ends at 10 a.m. on 29th March and applies to UK residents only.

So this is a good opportunity to get family and friends to sign up if you’re already a member, or if you’re signing up for the first time and want to donate the £20 to Invest in ME Research then please use this referral link, kindly provided by Paul Kayes – https://www.topcashback.co.uk/

You will see this message:

You have been referred by “Paulk22”

Paul has raised over £320 this way for Invest in ME.

TopCashback is among the ways to raise funds for free for Invest in ME – http://ldifme.org/raise-funds-for-free/#topcashback

Thank you & your friends & family for your support!

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Makayla Walks with the Animals for Invest in ME

Struck by Myalgic Encephalomyelitis (ME) at 8 years of age, 12 year old Makayla Nunn has embarked on her second year of raising awareness and funds for Invest in ME (Research). Makayla’s extraordinary efforts to support the charity in 2015 placed her in the top 3% of JustGiving fundraisers, as reported by the Weston Mercury last month and noticed by John Penrose, making the MP for Weston-super-Mare proud.

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Makayla was pictured at Priory Community School, holding Let’s Do It for ME Bear and the T-shirt, featuring some names of supporters and fellow ME sufferers, specially designed for her May 2015 Horse Walk for Invest in ME.

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After an excellent start to secondary school on reduced hours in September, Makayla’s mother Michelle Nunn said that Priory Community School deserves recognition as a model of good practice for support of children with ME.

Makayla won a Student of the Week Award, “Making her MORE POWERFUL THAN A MIGHTY STEAM TRAIN” according to actor Jon Campling. When Makayla was too ill to undertake any exertion other than watching films she had seen before, her favourite was Harry Potter, so imagine how delightful to be encouraged by a Death Eater!

Actor Jon Campling
Actor Jon Campling

Jon Campling described the picture Makayla painted and auctioned for Invest in ME last year as AMAZING. Art was another activity Makayla was unable to do during her worse phase of illness, so she went wonderfully wild with her colourful zebra, very apt in support of a charity leading the field in organising and funding cutting edge research for tests and treatments for the illness that “cruelly crashed” her fun loving young world.

Makayla’s efforts have also been kindly noted on Twitter by journalist and TV presenter Matthew Wright, and actress Linda Robson.

Makayla

If you would like a zebra picture personalised with your name to share online as a thank you for your support of Makayla’s 2016 awareness & fundraising for the charity Invest in ME Research, please contact Michelle Nunn. You can find Makayla’s Fundraising for ME on Facebook, follow Michelle Nunn on Twitter, sponsor Makayla on JustGiving or text WFME76 (£1-£5 or £10) to 70070.

Following on from her successful Horse Walk for ME 2015, Makayla plans a number of walks with different animals this year, starting with .. an Alpaca!
Move over Doctor Dolittle .. here comes little Miss Doalot!

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To read all about Makayla’s ME Awareness & Fundraising for Invest in ME 2015 see Second to Nunn and Makayla & Mummy

To adopt a Let’s Do It for ME Bear visit our shop on Spreadshirt.

Big thanks to this little girl & everyone supporting!
https://www.justgiving.com/Makayla-Nunn/

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Professor Ron Davis to Present at 11th Invest in ME International ME Conference 2016 by Stephanie Land

stephanie-landBy Stephanie Land
 
 
 
 
 
 
rondavis
Last summer, after failed attempts at asking the National Institute of Health for grant money to study myalgic encephalomyelitis, Ron Davis decided to raise funds on his own, literally from his own back yard. Davis, a biochemistry and genetics professor at Stanford University in northern California, had gathered a team of scientists, including three Nobel laureates, and a general plan of where to look for what causes the disease. Over two months, the Open Medicine Foundation, where he is one of the head scientists on the advisory board, raised $1M in donations to fund his research.

“I don’t expect necessarily that I’m going to solve this problem,” Davis said at the fundraiser. “This is a horrible problem, and a big one. But what I can do is start a movement.”

Davis, his wife Janet Dafoe, and their daughter Ashley Davis have all fought to start a movement to draw awareness to ME because for the last three years they have watched their son and brother Whitney Dafoe deteriorate rapidly before their eyes.

I knew Whitney over a decade ago when he visited a northern college town in Alaska as a photography intern for the summer. We were inseparable, immediately best friends, and kept in contact the best we could over the next several years before losing touch completely. I heard from him less and less, and wasn’t sure why. His last message said “can’t type” and he sent a couple of links to John Prine songs instead. That was Thanksgiving of 2014.

Whitney’s condition grew dangerously severe quickly in the next year, and by December he spelled out in Scrabble tiles that he was dying in the middle of the night for Ron, who along with Janet, spends 12 or more hours a day caring for Whitney, who hasn’t been able to communicate in over a year. “This tells me I am running out of time,” Ron wrote on the Open Medicine Foundation website. “I must find out soon what is causing the disease and how to cure it.” Ron is not competitive in his search for a cause. He thinks of it as a collective effort, attempting to change the narrative of the disease, which has been all but ignored by most in the medical profession. Ron’s methods are ones of watching, listening, and most importantly changing his own pre-conceived notions through studying the people most affected by the disease.

This makes him not only a vital part of ME research, but a presenter not to be missed at the conference scheduled on Friday, 3 June.

“I’m convinced this disease is really treatable,” Ron said at the fundraiser. “But we have to have a much bigger effort.”

Stephanie Land is a writer whose work has featured, for example, in The Guardian, The Washington Post, New York Times, The Huffington Post. You can visit her website and find her on Twitter and LinkedIn.

Our thanks to Stephanie Land for her excellent guest post.

We noted in November that responsibility for research into this disease at the NIH in USA had transferred to the National Institute for Neurological Disorders and Stroke (NINDS). The plan for an intramural study was recently announced, to be led by Dr. Avi Nath, who said, “I did talk to Dr. Davis and we’re absolutely delighted to collaborate with him.”

NIH Director, Dr. Francis Collins, said, “We’re quite serious about looking for opportunities to expand our research in this area and to recruit new investigators in the field, bringing new eyes and new brains into the issue of trying to understand the puzzling aspects that previously have eluded us.”

This has been the strategy in UK forged by Invest in ME and the charity has invited NIH to be represented at their international Biomedical Researchers into ME Colloquium in London over two days in June, an excellent opportunity to meet and discuss with leading biomedical researchers from at least 15 countries.

Further reading ..

Invest in ME announce Conference Speaker – Professor Ron Davis

Invest in ME invite the American National Institutes of Health to London to participate in the Conference & Colloquium in June 2016

You may also like Nomenbar for M.E!

UPDATE: Posted by the Open Medicine Foundation ..

We are proud our ME/CFS Scientific Advisory Board director, Ronald Davis, PhD, is one of the few speakers at the Invest in ME International Conference on June 3 and the Biomedical Research in ME Colloquium on June 1-2, both in London, England. These annual events are a great opportunity for researchers to learn and share with each other what they’ve learned and what they are pursuing.

Our executive director, Linda Tannenbaum, will also attend both meetings. This is a great privilege as the colloquium is by invitation only.

We appreciate Stephanie Land writing a blog telling about Dr. Davis’s motivation for getting into ME/CFS research and his stellar credentials.

You can find more details at the conference website.

Linda Tannenbaum (now pictured below with Ron Davis at the 2016 IIMEC events) gave an excellent speech at the Invest in ME pre-conference dinner in 2013, included on the IIMEC8 DVD – http://investinme.eu/IIMEC8.shtml#dvd

As people with severe ME, we are enormously grateful to all the parents of fellow sufferers for all that they are doing to establish proper recognition, diagnostic tests and treatments for everyone with this disease.

UPDATE: Stephanie Land’s excellent articles have been published this month in the Huffington Post & Your Tango.

UPDATE: 2016 IIMEC11 Conference Report and full presentations on DVD – http://www.investinme.eu/IIMEC11.shtml#home

UPDATE: Professor Ron Davis will be returning to London in 2017 for the Invest in ME Research Conference events – http://www.investinme.eu/IIMEC12-news-1203.shtml

Amanda and Richard’s Kilimanjaro Climb

Amanda & Richard
 

Let’s Do It for ME co-founder Paul Kayes’ amazing sister Amanda and her husband Richard are doing a great job raising awareness and funds for Invest in ME Research with several events planned – their biggest being the ambitious task of climbing Kilimanjaro.

 

Amanda and Richard’s Story

For some time now we have been thinking about what we could do as a big personal challenge that could result in making a difference to others. We have decided, in our wisdom, to climb Mount Kilimanjaro in March 2016 – a 7 day trek to reach the 5895 metre summit of the highest free standing mountain in the world and the tallest mountain in Africa.

As Amanda really doesn’t like walking (or sharing smelly toilets!) and Richard is afraid of heights, not withstanding the difficulties of altitude sickness and 8-12 hour treks per day, it should indeed be quite a challenge!

We are doing this challenge in order to raise money and in particular awareness of a small independent UK charity very close to our hearts – Invest in ME Research.

 

Sponsor us
Every penny will go to the charity!

 
Kiliflag
 

Why this charity?

Well in 2002, Amanda’s brother, Paul Kayes, was struck down with M.E. (Myalgic Encephalomyelitis) following a virus. He was very fit, active, had a good job, a loving wife and two children, yet this illness showed no mercy as it gripped his body and as a result, for the last 13 years he has become virtually housebound and most of the time is confined to his bed. His only hope is that a cure for ME is found.

Invest in ME is run on an entirely voluntary basis by sufferers and parents of children suffering from M.E. Every penny they receive goes towards finding the cause and cure for this horrible illness whilst also trying to educate health care organisations and the public.

Their most recent push is to raise funds for Biomedical Research into ME and have already laid foundations for a UK Centre of Excellence for ME Research. We want to help them take a step closer to reaching their goal, so that one day soon, a cure can be found to help Amanda’s brother, and other sufferers, to get their lives back. We also want people to understand more about M.E. so its sufferers don’t feel so misjudged.

 

So, what exactly is ME?

ME is a debilitating illness that affects 250,00 people in the UK (a prevalence higher than HIV or multiple sclerosis) and around 17 million worldwide. 25% of sufferers are severely affected to the point they are effectively house or bed-bound. 10% are children. There is no cure. Even the cause is unknown, as so little research has been funded to date, although it often follows a viral infection.

ME is thought to be primarily a neurological disease with symptoms such as extreme physical and mental exhaustion, muscle weakness and paralysis, joint pain, head pain, blurred vision and severe dizziness or blackouts, vertigo, insomnia, respiratory problems, noise and light sensitivities, cognitive impairment, digestive problems and a host of other symptoms.

ME doesn’t prey on the weak, it can hit anyone…..strong men, active women, healthy children….at any time. It can last anything from a few months to a lifetime. It can kill. Sufferers feel misunderstood, misjudged and isolated.

MerrynPictured is a young girl called Merryn. She suffers from severe ME, having been struck down with it aged 15. She was an active teenager, loved school and was part of an acting and modelling agency. Now she is bed bound, in constant pain, needs 24 hour care, is unable to walk talk or swallow and has been diagnosed with intestinal failure. Doctors fear for her life, yet Merryn continues to fight and supports other ME sufferers as well as raising awareness through Invest in ME. This is only one story.

These people need our help… and to know we care.

 

Don’t just take our word for it. We asked some ME sufferers to try to put into words what it’s like to have ME and what they would like people to know about how they truly feel.

This is what they said:

“It’s like you have been injected with a deadly poison, where every part of your body feels like it’s slowly shutting down. I feel trapped inside my own body, often wondering how I can be so ill yet still be alive, and yet the medical profession has no answers.”

Hayley Green 27, sufferer for 8 years.

 

“It’s like someone pulls the plug and you are left to function on whatever dregs of low battery you have left. In other words, running on empty. It feels like life as you know it is over, you become a spectator of life and not a participant. It is a very lonely illness to have with little support from the medical profession.”

Nicola Lavin 37, suffering for 14 years.

 

“It’s like having the worst flu every second of everyday, like your whole body is made of lead and just being able to get out of bed everyday is an accomplishment for me. I feel so scared for the future because the medical profession don’t even acknowledge this illness as real. It is real, very real…. it’s a living hell.”

Jade Thomson 32, sufferer for 3 years.

 

“It’s like walking a tightrope over hell, trying always to manage a condition about which no one really cares whilst every morsel of your skin burns and every nerve cell writhes and bounces against every other nerve cell and you just hope like crazy you can hold on. After so long I just feel utterly mentally exhausted. My mantra now is ‘ we need help, not hope’. I’ve been ‘doing’ hope for 45 years. That’s why people who have their health and can raise funds for bio-medical research mean so much to every one of us with this condition because they bring that ‘help’ a step nearer. Their steps lead directly to our steps…”

Rosie Cox 52, sufferer for 45 years.

 

These and further quotes feature on
Amanda & Richard’s leaflet


kilimanjaro charity leaflet

Also available on their webpage.


 
 

As part of their fundraising and awareness drive Amanda and Richard hosted a wine tasting competition on Saturday with 90 guests and raised an intoxicating £1470. Amanda’s brother Paul, who has been laid low recently and was greatly missed, shared news of the event to our Facebook page Monday.

 

Paul wrote:

I don’t know if I’ve mentioned about my wonderful sister and her husband who are doing a fantastic job raising awareness and much needed funds for Invest in ME’s biomedical research strategy. Well on Saturday they had a wine tasting competition with 90 guests and raised an incredible £1300 (see photos below)

Richard pictured in the IiME t-shirt, Amanda in orange Kilimanjaro hoodie (you can even see the back of Amanda’s mum Ann, who slaved away in the kitchen till 11.30pm)

Amanda wrote at 01.43 ”Just climbed in to bed!!! Very long night but it went well and now everyone knows the truth about ME and were very supportive in their comments and donations. I think we have raised around £1,300!!”

Of course the main event is still climbing Kilimanjaro and you can read the leaflet they created for this event here.

You can even go mad and donate if you want, not just because it’s my sister, but because we need the research 🙂