Crowdfunding for Invest in ME Research
Myalgic Encephalomyelitis (muscle, brain, spinal cord, inflammation) is neurological (WHO ICD-10 G93.3).
ME involves the immune system, most of the immune system is sited in the gut, dysregulation of the gut-brain axis has been implicated in other neurological diseases in recent years.
How much has been raised?
We initially crowdfunded £100,000 to enable the biomedical research programme to get underway in 2013 (patient samples taken from 2014). This had not been done in UK before and the success was thanks to extraordinary efforts and dedication of supporters including fellow patients, carers, families and friends.
The Let’s Do It for ME campaign was launched July 2011 by severely ill patients to support Invest in ME Research in their work to establish a biomedical model UK Centre of Excellence for ME.
Over £960,000 has been raised and pledged for Invest in ME Research projects completed, ongoing, or in the pipeline. The Invest in ME Research Centre of Excellence model involves medical education and professional development as well as bioscience to find biomarkers, diagnostic tests, and treatments.
What has been funded so far?
Crowdfunded for Invest in ME Research since 2011 to enable work underway and ongoing since 2013/2014
* Research on the gut microbiome based at Quadram Institute
* Research on B-cells based at University College London
* Four PhD students
(QI supervisor Simon Carding, UCL supervisor Jo Cambridge)
– The first two PhDs successfully completed their studies in 2019.
Congratulations Dr. Daniel Vipond, QI and Dr. Fane Mensah, UCL!!
– Katharine Seton and Fiona Newberry currently working on their PhD studies, joined at QI by Ernie Hsieh.
* Medical students funded to spend an intercalated year on the biomedical research funded by the charity
– Navena Navaneetharaja and Verity Griffiths co-authored a paper with Tom Wileman and Simon Carding. Naveena spent three months at Professor Maureen Hanson’s lab at Cornell University advancing international collaboration.
* Another PhD is being funded for a joint project between researchers in Sweden and UK. The charity has proactively fostered international collaboration since they formed a small group in 2005.
Invest in ME registered as a charity in 2006 (number 1153730) and transitioned to the name Invest in ME Research (number 1153730) in 2016 so you may see both names/numbers credited as funders but they are the same charity.
See Published papers and Invest in ME Research Blogs
A clinical trial of faecal microbiome transplantation (FMT) for Myalgic Encephalomyelitis (ME) at Quadram Institute on Norwich Research Park is planned to start in 2020 and brings together all the elements of the progressive Invest in ME Research Centre of Excellence for ME. February 2020 video and slides here.
What criteria are used to select patients for the research?
ME is classified as a neurological disorder by WHO (ICD-10 G93.3).
For research purposes, patient participants at a minimum meet the international Canadian Consensus Criteria for ME/CFS and are patients assessed by NHS clinical specialists.
There may be additional inclusion/exclusion criteria depending on the purpose of each particular study.
Why crowdfund for Invest in ME Research?
There is no money idling in the Invest in ME Research bank accounts. Every £1 is earmarked for the charity’s work in progress or crowdfunded in advance. They do not have a paid membership so they have no income from membership subscriptions and they receive no government funding.
They are a grassroots charity run by volunteers and no staff salaries to pay.
This does mean they have scarce time and resources for promotional work to attract sponsorship and that is why their supporters play a vital role.
Most of the charity’s resources are freely available online or sold at cost-price or thereabouts to make them affordable for patients.
They also spend a lot of time on campaigning, lobbying, advocacy, to change the way that ME is funded, researched, treated in UK and internationally in terms of government policies, and also helping in individual cases.
However, most of the money they receive in donations is spent on bioscience and medical education projects as that is the proven way to fast-track progress for patients and families waiting decades for change.
Let’s Do It for ME launched to crowdfund the Invest in ME Research Centre of Excellence biomedical research but we support all fundraising for the charity’s work.
to feature your own fundraising for Invest in ME Research
Thank you for supporting Invest in ME Research!