Susanna has been selling Christmas garlands over the year of 2019 to fill people’s homes with festive joy and also raise precious funds for Invest in ME Research for biomedical research into Myalgic Encephalomyelitis.
Susanna’s efforts have raised over £600 including Gift Aid.
“Thank you so much for your support. Your donation may just be the £1 that gives some concrete answers and makes all the difference to me and people like me.” Read Susanna’s story on Wonderful here.
Invest in ME Research and Quadram Institute are arranging a Public Engagement Event in Norwich on 7th February 2020 and are inviting patients, carers and supporters to send them any input to the meeting.
They are collecting information now in order to plan the agenda. If you have specific issues or questions that you feel should be addressed at the public meeting then please use the contact form on this page.
Supporters will know that work has been ongoing to establish a Centre of Excellence for ME (Myalgic Encephalomyelitis) based at Norwich Research Park, which houses Norfolk and Norwich University Hospital, University of East Anglia, Norwich Medical School, Earlham Institute (formerly The Genome Analysis Centre) and the new Quadram Institute.
Invest in ME Research is run by volunteer parents and patients. The charity published a detailed proposal for a centre in 2010 and began crowdfunding in 2011 to enable the biomedical research programme to get underway in 2013. The next phase is a clinical treatment trial of faecal microbiota transplantation for ME planned to start in 2020.
IiMER and QI are keen to discuss the planned research with patients and carers, and wish to get views and additional insights to help them shape their future research. They will be discussing logistics for this meeting and will be meeting in the New Year to plan the event.
Please contact them through the contact form on this page.
The meeting itself will be on the morning of 7th February 2020 (the likely time being 10:30 – 12:00) in the new Quadram Institute building near the Norfolk and Norwich University Hospital; postcode NR4 7UQ.
More details will be provided nearer the time.
Many of us are too ill to leave our homes or are unable to attend meetings in person for other reasons, but please do take this opportunity to share your thoughts and ask any questions to help shape the agenda.
Let’s Do It for ME is run by severely ill patients supporting Invest in ME Research and their Centre of Excellence for ME projects.
Day 23 of the Invest in ME Research Advent Calendar is about the Centre of Excellence for ME so you can read more about it here.
Team members: FFion Hicks, Verity Ballard, Sophie Martin, Claire Bloomer, completed the Weston Athletic Club Christmas Cracker 10k run in aid of Invest in ME Research for their friend Catherine Halford.
Catherine’s Story
I was first diagnosed with ME at the age of 12 after having glandular fever, I did not recover from this so many months of hospital visits led to my diagnosis. This had a big impact on my teenage years spending much of my time unable to join in with school activities and general growing up. I was always very active and enjoyed many sports. I spent 5 years managing my health along with my education with lots of support from my family. Much of my time was spent in bed unable to move and many nights of severe pain. I was then very lucky and things started to get easier for me, my pain levels went down and I had more energy. As the years went on I was able to lead a relatively ‘normal’ life with my ME in the background. I was well enough and able to train for and run the London Marathon which is an achievement I am very proud of and can only dream about doing again. In 2018 I caught the flu, this hit me hard and with my immune system hitting a low my ME was re-triggered. This has been life changing for me, I have had to give up a job I love, my hobbies and can not always be there for my husband and children as much as I would like. I spend my days trying to manage my illness once again while being there for my family. I would love to be out running again but this is just not a possibility. My lovely friends are running the 10k Christmas Cracker in order to raise money to support a fantastic charity. I am so grateful to them and charities that support ME, one day treatment and a cure will be found to stop many others going through these life changes due to the illness.
Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).The charity is run by volunteers – patients or parents of children with ME – with no paid staff.Overheads are kept to a minimum and all funds raised to go to promoting education of, and funding for biomedical research into, ME.Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).
Author Hayley Green (Hay Baker) will send you any one of her paperback books of your choice as a thank you for any donations over £10 to her Facebook Fundraiser. You can see all of her books here on Amazon.
If you decide to buy any items on Amazon, please remember to use this referral link or sign up to Amazon Smile to generate an extra donation to Invest in ME Research at no extra cost to yourself.
Browse our bookshelf of other books kindly sold with part or full royalties to Invest in ME Research.
Hayley is a long term ME sufferer, which is the topic of Day 4 of Invest in ME Research Advent Calendar and includes video of a presentation at the charity’s 6th conference by Dr. David Bell on his 25 year follow up of patients who initially fell ill during an outbreak in 1985.
It’s Day 4 of the free to enter easyfundraising contest to win prizes for you and donations for Invest in ME and still time to nominate the charity to a win £1,000 prize from Ecclesiastical specialist insurers.
We couldn’t let this day go by without taking the opportunity to thank everyone generously giving of your precious time, extraordinary efforts, sheer genius and money, to support the work of the volunteer-run UK charity Invest in ME Research and, especially as far as the Let’s Do It for ME campaign is concerned, joining us in enabling the charity’s Centre of Excellence projects to get underway and ongoing.
You are all much appreciated, whether you are a well friend and run a mountain marathon, or are bedbound and feel like you run a mountain marathon every day, supporting by sharing posts and links online.
We highlight a few of these current endeavours today.
Rebeccah Prince’s innovative Five Portions Of Etsy shop closes on 12th December. Five Portions Of is also on Facebook and Twitter.
“I am holding a Pop-up Christmas Fair at my house for friends, family and local residents with my stall selling unique themed gift boxes which I put together under the name of Five Portions Of, lovely artisan stalls and a Christmas cafe to raise money for Invest In ME Research. This is my second fair and last year I raised a coupe of hundred pounds for Invest In ME Research. If you are unable to make it to the fair and would like to donate please use this fundraiser. I myself have been a participant in the Gut Bacteria studies by Invest In ME Research so it is a charity that is very important to me.” Read more…
Please send Jane Hurst a private message on Facebook if you’d like to buy a pack or two of her gorgeous nature photo cards.
Thanks again to Jane’s family who braved the cold for another sale of her cards, kindly hosted by O’Flynn’s Budgens in Poringland and with proceeds to Invest in ME Research.
Choose from a range of lovely jewellery handcrafted by Lynne available on Etsy at ME2UDezignz.
Christmas to a T? The amazing Mama Chill’s limited edition design for men and women available to buy online from her shop on Dizzyjam.
Invest in ME Research shone the spotlight on the brilliant efforts of Jen Govey on Day 3 of their Advent Calendar. Jen joined Team Let’s Do It for ME last year with her absolutey fabulous awareness and fundraising idea #DressForME. She’d love you to join in the fun if you’re well enough to do fancy dress or cosplay or simply like and share.
Day 3 of easyfundraising’s £5k win-win Advent Calendar contest, and still time to nominate IiMER to win £1k in Ecclesiastical’s 12 Days of Christmas.
Finally, one thousand thank yous to the donor of £1,000 to Invest in ME Research lighting up their Christmas Funding Tree!
Happy Giving Tuesday everyone and thank you for your support!
Merry Christmas Everyone
