In Loving Memory of Robert Courtney (Bob)

“To raise money for Rob’s chosen charity because he fought and lost a 13 year battle with M.E.” justgiving.com/fundraising/bobbobme

Robert Courtney (1969 – 2018)

We were devastated to hear of the lovely Bob’s passing and we extend our deepest sympathy to his family and friends and all whose lives he touched.

Bob was a long term supporter of Invest in ME Research and also kindly supported our patient-driven campaign to help raise awareness of the charity’s work to establish a UK Centre of Excellence for ME and to help raise funds for their programme of biomedical research to establish tests and treatments for Myalgic Encephalomyelitis (ME).

Bob’s sister Vicki Clark has kindly created a fundraising page for Invest in ME Research as one of his chosen charities: www.justgiving.com/fundraising/bobbobme

This appeal is to raise funds for the charity UK Invest in ME serving patients who suffer from M.E. (Myalgic Encephalomyelitis)

The appeal is in loving memory of Robert Courtney, an internationally recognised patient campaigner, dedicated to his family and friends. Also known as ‘Bob’, ‘BobBob’, ‘Rob’ and ‘Uncle Bobble’.

Robert was tragically taken from us on 7th March 2018, having lost his battle with M.E.and having struggled against several serious related conditions. M.E. is an illness that is still under-researched, has no treatment or cure and which influential sections of the medical profession still frame only as a state of mind, rejecting physical causes.

Robert touched the lives of so many over his 48 years with kindness and love, whether among his family and friends or his dedication to the quest for a cure ME, a debilitating condition he lived with for the last 13 years of his life and which left him bed-bound in his final years.

Read more, share or donate here: justgiving.com/fundraising/bobbobme

Our thanks to all for your support.

Kate’s Christmas for Charity

Give a gift of hope this Christmas with a donation to Invest in ME Research

By Kate Chaplin

Thanks for taking the time to visit my JustGiving page.

This year instead of a present for Christmas I would love nothing more than a donation to “Invest In ME Research”.

Invest in ME (IiME) is a charity that is looking to create awareness and research treatments for ME/Chronic Fatigue Syndrome, an illness often dismissed.
http://www.investinme.org

I have suffered from ME/CFS for many years, through ups and downs, never knowing how I will be from day to day.
The last 2 years have been my worst relapse since I was first ill, and life has stopped again.

But I live in hope of better understanding and awareness, diagnostic tests, treatment, and, of course, a cure.

So please, whatever you can afford, no matter how small, please make a donation today.

Much Love – Kate x

P.s. The photo was taken in better times.

Kate’s Christmas: www.justgiving.com/fundraising/kate-chaplin

Thank you for your support!

December Doings for ME!

December Awareness and Fundraising for Invest in ME Research

Help me celebrate Life by helping a good cause.
Jon Campling: justgiving.com/fundraising/walktall4me

For a summary of Jon Campling’s activties in support of Invest in ME Research throughout 2017 see our blog Campling Can.

Follow the daily adventures of IIMER Bear in the run up to Christmas through his advent calendar on Instagram or Twitter and on Facebook via Anna Mitchell admin of Invest in ME Research Group.

Order the charity’s Christmas Cards here:
http://www.investinme.org/shop.shtml#cc

Order Five Portions of on Etsy here: etsy.com/uk/shop/FivePortionsOf
Profits from each box are kindly donated to IiME Research.

I have a few things made up ready to post as not making anything at the moment due to health and eye problems. Please take a peek & feel free to share Thanks, Lynne. www.etsy.com/uk/shop/ME2UDezignz

If you’re doing any Christmas shopping online please check out our ways to Raise Funds for Free as well as our Shop tab above.

This year instead of a present for Christmas Kate Chaplin would love nothing more than a donation to “Invest In ME Research”.
Join in Kate’s Christmas on JustGiving: www.justgiving.com/fundraising/kate-chaplin

During the first week of December all proceeds of the sales of any or all of my books will be donated to Invest in ME Research.
Rosalynde Lemarchand: roslemarchand.blogspot.com.es/2017/11/why-we-need-to-keep-fighting.html

You can generate an extra donation to IiME Research when you buy anything on Amazon at no extra cost to you by using this referral link.

Becca Hams’ fundraising page in honour of the late Lynn Gilderdale’s 40th birthday remains open for donations until 20th December 2017. Lynn sadly took her own life on 4th December 2008 ending 17 years of suffering from very severe ME. https://mydonate.bt.com/fundraisers/lynngilderdale40

Please contact us or send us a message on Facebook or Twitter if you’d like us to highlight your awareness or fundraising for the charity Invest in ME Research.

Best Wishes for December everyone.

Thank you for your support!

Walk Tall 4 ME

Amazing actor and advocate Jon Campling has set up a new fundraising page for Invest in ME Research: justgiving.com/fundraising/walktall4me

Support Jon Campling’s Walk Tall 4 ME: www.justgiving.com/fundraising/walktall4me

Catch up on Jon’s fantastic fundraising throughout 2017 in our blog
Campling Can.

Thank you for your support!

Thank You Jeremy Corbyn!

Online group card to thank Jeremy Corbyn for agreeing to open IIMEC13: http://www.groupcard.com/c/vRZACP3vJAn
By Jo Best

Dear all,

I have set up an online group card for anyone who may like to sign to thank Rt Hon Jeremy Corbyn MP for kindly accepting an invitation by Invest in ME Research to give the opening speech at the charity’s 13th international biomedical research conference in Westminster, London, on 1st June 2018.

The link is here: http://www.groupcard.com/c/vRZACP3vJAn

Jeremy Corbyn has served as the Member of Parliament for Islington North since 1983 and as Leader of the Labour Party and Leader of the Oppositon since 2015.

Invest in ME Research explained that the charity has been in communication with Mr Corbyn’s office for some years and with a constituent whom they have supported. Mr Corbyn has received Ian Gibson’s book, published in March this year, ‘Science, Politics, ….and ME‘ and other IiME Research informational material about Myalgic Encephalomyelitis and ME research over the years. They wrote,

“We have been told the invitation has been accepted – but that it is always subject to external events – general election, political events, etc. That is fair enough. The best way for patients to react, if they wish, is probably just to express thanks – maybe on something like Twitter.”

So I thought an online group card may be an easy way for people to do this if they wish, and I hope it goes without saying that this isn’t a party political issue.

The sad fact is that ME patients and their families in UK have been let down by successive governments over several decades past.

ME as a disease (classified by WHO as neurological since 1969) has been neglected, misunderstood and even maligned, and now is the time for change.

The Chairman and Trustees of Invest in ME Research have always campaigned for change in the way that ME is perceived and treated, as well as providing much-needed support to individual patients and families, often suffering dire circumstances that should not exist in civilised society in the 21st century.

The charity’s main means of achieving change is by finding, facilitating and funding biomedical research, but the proactive support of politicians is needed to ensure that sufficient public funds are directed to high quality biomedical research focused on establishing tests for differential diagnosis and effective medical treatment options for people diagnosed with this disease, estimated at 250,000 people in UK alone, 10% of whom are children and 25% in the category of severe or very severely affected, many unable to move, speak or swallow.

While David Cameron was Prime Minister, he arranged a meeting between IiME Research and the NHS Commissioning Board Authority, Director – Domain 2- Improving the quality of life for people with Long Term Conditions, Dr. Martin McShane, as a result of meeting with a constituent to discuss ME.

Jeremy Corbyn has, over several years, supported issues of concern to constituents with ME. He has signed letters, petitions, Early Day Motions, including EDM 778, tabled in 2010 by Ian Swales, then MP for Redcar, in support of constituent with severe ME Jan Laverick, and her mother Margaret Laverick, which earned a short debate in Westminster Hall and resulted in the first ever ringfenced funding for biomedical research into ME by the Medical Research Council, £1.5m (later increased to £1.6m).

This was a fine example of what may be achieved by positive political action, but amounted to about £6 per head of the UK ME patient population with no clear strategy for how this funding would be focused on finding cause/s or treatment/s.

Jan Laverick went on to co-found the Let’s Do It for ME campaign with Paul Kayes and me a few months later in the summer of 2011 to help crowdfund to enable the programme of biomedical research of the Invest in ME Research Centre of Excellence for ME to begin, and hopefully progress to fruition.

Ian Gibson is a former MP for Norwich North and his concern for constituents with severe ME prompted him to lead an Inquiry. The Gibson Report was published in 2006, the year that Invest in ME first registered as a charity.

Dr. Gibson is also a former Dean of Biological Sciences at University of East Anglia and has been instrumental in progressing the charity’s efforts to establish Norwich Research Park as the hub of an international Centre of Excellence for ME. He is a member of the Invest in ME Research Scientific Advisory Board and he chairs the charity’s annual London conference, so he will receive the Thank You card by email on Thursday 30th November to present to Jeremy Corbyn.

The link is here and anyone is welcome to sign and leave a message: http://www.groupcard.com/c/vRZACP3vJAn

With thanks and every good wish to all.

Jo Best
(Diagnosed with ME in 1992, housebound since 2008)

“This is such a nice idea – it would be wonderful to reach 1000 thank yous. The team actually did not think the reaction would be so good as everything has been concentrating on establishing new opportunities for collaboration at the Colloquium, and the new Thinking the Future event for early career researchers. So it has made everyone happy to see the response. Thank you all.”
Invest in ME Research, November 2017.

The Invest in ME Research Conference is open to the public by pre-paid ticket-only available at an earlybird discounted price until 3rd March 2018: http://investinme.eu/IIMEC13.shtml#register

Our blog about the 2018 conference events:
Back The Future of Biomedical Research for ME!