What a Weekend for Fab Friends of People with ME!

 

In the sizzling summer heat Olivia Robinson and Rachel Froebel did the AJ Bell Triathlon and Mike Harley ran the Sturminster Newton Half Marathon in training for the next of his 28 EU Marathons for Invest in ME Research.

All three are raising awareness and vital biomedical research funds for the charity because their friends have Myalgic Encephalomyelitis (ME).

What’s Up TV also kicked off their campaign to help raise awareness of ME.

 

AJ Bell London Triathlon 2018

 

Actress Olive Robinson (pictured left) fitting in her training and the triathlon in the middle of 16 shows in Newcastle, explained…

“M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide. One of those precious humans is my best friend of 25 years. A once, very active woman who now spends most of her days in a chair, bed or wheelchair. A reader, dog walker, runner, swimmer, weight lifter, shape-thrower (!) who’s bound by her body’s inability to produce energy. People have often asked me how I have been so diligent with my training and the answer is so simple…”

Read Olivia’s story

Rachel Froebel wrote…

“A very close friend of mine Sofija has been diagnosed with M.E. (Myalgic Encephaloyelitis, also known as Chronic Fatigue Syndrome). It is a severe neurological disease that leaves 25% of patients bed bound. There is currently little treatment available on the NHS and no cure. Many people don’t understand the impact this disease has on people’s lives so I want to contribute to supporting this vital cause and would hugely appreciate your contributions.”

Read Rachel’s story

 

Mike’s EU Marathons


By Michael Harley…

“Over 250,000 people in the UK suffer with the ME and that includes 25,000 children as well as one of my good friends who has suffered for almost 10 years with the illness. Watching him drift from year to year without improvement is extremely hard to watch, I want to try to do something to stop this. He’s not depressed or making it up, he’s one of the most popular and positive people I know. He’s ill. Invest In ME (www.investinme.org) are committed to raising funds and awareness to find the cause and cure and are a voluntarily run organisation doing some amazing work. They’re the only organisation really making progress in working with scientists and researchers to find cures and treatments. They will be opening a specialist centre of excellence for ME in 2018 where patients can get diagnosis and treatment and have even crowd-funded enough to hold their own clinical trials to find a cure/treatments. They are also funding the PhD’s of students investigating the cause and possible treatments of the disease.”

Read Mike’s story

 

What’s Up TV

 

On Saturday What’s Up TV opened their new series on Sky One (in which they hope to build awareness of ME) by featuring a performance of the powerful poem One Stupid Dot by Stacy Hart, who writes as Runnin On Empty (ROE) and makes music as the amazingly talented Mama Chill.

 

What a weekend – many thanks everyone supporting!

 

Runners wanted for Royal Parks Half Marathon October 2018

See more Fundraisers for Invest in ME Research 2018

Join Team IiMER Royal Parks Half Marathon October 2018

Invest in ME Research has secured FIFTEEN places in the London Royal Parks Half Marathon on Sunday 14th October 2018 and some are still available.

If anyone you know may be willing and able to join Team IiMER 2018 in this event then details are at: investinme.org/IIMER-Newslet-1801-02.shtml

This will be another great opportunity to raise awareness of the charity’s strategy of funding high-quality biomedical research into ME (Myalgic Encephalomyelitis) and the development of a UK/European Centre of Excellence for ME.

All funds raised for Invest in ME Research will go to supporting, promoting or funding biomedical research into ME so please spread the word.

This Royal Parks Half Marathon route takes in the capital’s world-famous landmarks on closed roads and winds through four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens in all their autumnal splendour.

There are 16000 runners in the marathon.

The course is 13.1 miles (21 km) long.

To find out more about joining Team IiMER in the Royal Parks Half Marathon 2018 and to contact Invest in ME Research please click here.

Pictured below, Christian, Helen and Gemma did the Royal Parks Half Marathon for Invest in ME Research in 2017 (T-shirt designs may differ for 2018).

Huge thanks to Team IiMER and everyone supporting!

Get in Great Company for Fantasy Football League 2018/19!

The York ME TGA Inter-Company Fantasy Football League is open for season 2018/19. Open for all businesses to join in, not just York-based.

⚽ All funds raised go directly to UK charity Invest in ME Research.


The York ME TGA Inter-Company Fantasy Football League is open for season 2018/19 and all funds raised will again be going directly to Invest in ME Research. Open to ALL businesses, and they don’t have to be York-based to join up, so please share widely to let companies know about this opportunity to have a bit of fun and gain some bragging rights, while helping a great cause!

Bill Clayton of The York ME Community runs this Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness Myalgic Encephalomyelitis (ME) that affects around 250,00 people in the UK.

Entry for a company team will be £25.00, and if they wish to enter more than one team, the remainder will be only £15.00 each. Once teams are up and running, registration fees will be requested to be paid to The York ME Community fundraising page on Just Giving, going directly to the charity, Invest in ME Research: justgiving.com/fundraising/The-York-ME-Community

There will be a trophy, bragging rights, media coverage, as well as publicity from The York ME Community world wide website and social media.

Remember the company does not need to be York based to join up – everyone is welcome!

Companies are asked to sign up before 10 August, which is the league start date.

If you have any questions at all, please contact Bill Clayton at:

billclayton@live.co.uk

Full details here: york-me-community.org/york-inter-company-fantasy-football-league-for-the-york-me-tga-shield-201819/

Former winners are pictured below.

NG Plumbing and Heating topped the York Inter Company Fantasy Football League 2017/18 (special prize courtesy of Nestlé of York)

First in line, Bransby Wilson Group won the inaugural York Inter Company Fantasy Football League TGA Shield 2016/17

Many thanks to The York ME Community and everyone supporting!

IIMEC13 DVD Out Now

Invest in ME Research have begun distribution of the IIMEC13 DVD.

The DVD set includes full presentations at the charity’s 13th international biomedical research conference held in Westminster, London in June 2018, plus the pre-conference evening dinner speech this year by Carol Head, President of the USA organisation Solve ME/CFS Initiative. Prevous pre-conference dinner speakers from across the pond include Hillary Johnson, Linda Tannenbaum, David Tuller. DVDs of past conferences are also available.

David Meachen at DJM Digital has performed another excellent job in professionally authoring these conference DVDs which may be used to obtain points for continual professional development. David has been working with the charity since the first conference in 2006 to produce the best possible record of these CPD-accredited conferences. The DVDs are heavily subsidised by the charity in order to make them available to as many patients, patient groups, carers and researchers, healthcare, media and politicians as possible.

IIMEC13 marks 13 years of commitment to biomedical research into ME by Invest in ME Research. A remarkable achievement, level of commitment and perseverance by a small group of patients and carers, ably supported by scientists and clinicians working to the same high professional standards.

“Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world.” Dr. Leonard A. Jason and Zachary A. Siegel.

The 2018 conference attracted delegates from twenty different countries – from Europe, North America, Japan and Australasia.

The conference day was preceded by the 8th Invest in ME Research International Biomedical Research into ME Colloquium – a two day closed researchers’ meeting with almost 100 eminent researchers invited to attend from fourteen countries. Through the multiple international collaborations the charity has formed there was an incredibly positive atmosphere beginning with the BRMEC8 Colloquium and continuing through the IIMEC13 Conference days.

The charity added an extra event this year, a day for young or early career biomedical researchers, called Thinking The Future. Dr. Vicky Whittemore announced at the conference that NIH would follow suit.

Organisations assiting Invest in ME Research in sponsoring IIMEC13 were Solve ME/CFS Initiative, RME Sverige, Norges ME Forening, Irish ME Trust.

Solve ME/CFS Initiative also supported Katya Lavine, Stanford ME/CFS Initiative researcher, with an SMCI MeetME Travel Award to attend the events. Katya’s excellent account of the events is here and she concluded,

“I am even more excited about the momentum of this community, the groundbreaking research on the horizon, and the brilliant minds devoting their lives to this disease. Solving M.E. is more than an issue of science. It is an issue of justice. Moving forward humbly in my own work on M.E., I am grateful for my time at IIME and for the passionate international community I have the chance to work alongside.”

The IIMEC13 conference showed the major initiatives and research taking place to continue an international collaborative strategy for biomedical research into Myalgic Encephalomyelitis which Invest in ME Research has been championing since after the 2007 #IIMEC2 conference.

The presentation by Professor Theoharis Theoharides was preceded by a moving tribute to the late Anne Örtegren, outstanding advocate, great friend to Invest in ME Research and staunch supporter of the Let’s Do It for ME campaign.

Just a few weeks before her death Anne wrote,

“I’ve followed LDIFME for all these years and you do an amazing job!

I also feel very strongly about IiMER and am just in awe of what everyone involved have accomplished. Where would we be without them/you?”

On a personal note to regular followers of our blog and supporters of our campaign to help raise awareness and funds for the Invest in ME Research Centre of Excellence for ME, it is obviously terribly hard to lose our friends and fellow supporters, and we hope you are ok.

Every time we are knocked down by another loss, we have no choice as a team but to get back up again and keep going until we have the medical tests and treatments that we need, not only to honour the lives lost, but for future generations and of course, in the hope that we may regain our own lives.

So we are back on the road to reaching the next £200k of our £1,000,000 target to support next phases of the biomedical research programme of the Invest in ME Research Centre of Excellence for ME. If you’d like to be more involved in supporting our campaign please contact us or the charity directly. Whether you’ve been with us over the past seven years since we launched our campaign or are newly aboard, we sincerely thank you for your suppport.

The agenda pictured below shows the IIMEC13 speakers and topics. Professor Simon Carding was unable to attend, so Fiona Newberry and Katharine Seton spoke on his behalf and that of fellow PhD candidate Shen-Yuan Hsieh.

You can find the full agenda and conference reports on the IiMER Conference website and a report by Dr. Rosamund Vallings & Dr. Sarah Dalziel here.

IIMEC13 gallery and comments by delegates here.

The Journal of IiMER is here.

Order the DVD here.

If possible, perhaps buy a copy for your doctor or MP or let them know this is available? Your doctor can obtain CPD points for watching and your MP can be better informed in preparation for a full parliamentary debate on ME research and treatment in the House of Commons, which Carol Monaghan MP is pressing for. See our summary of the 3-hour Westminster Hall debate in June here and our blog about writing to your MP here. The book by former MP and Chair of IIMEC13, Dr. Ian Gibson and his friend Elaine Sherriffs is available on Amazon, search ‘Science, Politics and ME’ and raise an extra donation to Invest in ME Research at no extra cost to you by buying via Amazon Smile or this referral link.

We end with a selection of tweets of the Invest in ME Research Conference events, starting with AA hero Scott apparently saving the day!

We have never been to the conference ourselves, by the way, as we are mostly long-term house or bedbound by ME, so we very much appreciate supporters able to be there in person and keeping us involved on Facebook or Twitter #IIMEC13 #BRMEC8 #ThinkingTheFuture2018 including ever-so-modest IIMER Bear, who debuted at last year’s conference, Emma Joy whose husband Adam has since cycled from London to Paris in 22 hours fundraising for IiME Research, Mike Harley flying the flag and Nancy Van Hoylandt brandishing the umbrella for the European ME Alliance and European Federation of Neurological Associations.

Thanks so much to everyone supporting Invest in ME Research.

Let’s keep doing it for ME.

https://twitter.com/iimerbear/status/1001100635209596933



IIMEC13 DVD
Journal of IiMER
Donate to IiME Research

800k…and Counting to a Million!


WAYS TO DONATE TO INVEST IN ME RESEARCH

We’re off on the next leg of our fundraising journey to raising a million pounds for Invest in ME Research Funds for their Centre of Excellence biomedical research programme aiming to establish diagnostic tests and medical treatments for Myalgic Encephalomyelitis (ME).

We’ve created a new JustGiving fundraising page.

We are on BT MyDonate.

You can also raise donations to Invest in ME Research at no extra cost to you when shopping online, or by buying from sellers donating some or all of their profits to the charity, and simply sharing links on social media helps to raise awareness of the charity’s work on establishing a Centre of Excellence for ME.

Thank you so much for your support!

* June 2018 Status Update on Invest in ME Research Centre of Excellence for ME

* Write to your MP

* Our summary of parliamentary debate on ME treatment and research