Securing the future of the UK ME/CFS Biobank
To secure the future of the UK ME/CFS Biobank, an innovative resource which will allow collaborators worldwide to conduct cost-effective research into a poorly understood disease that causes great suffering.
The Biobank is the only one of its kind in the UK, and the first in Europe.
January 2015 - January 2018
Charity information: ME Association
Robust biomedical research on ME/CFS is urgently needed. The mechanisms of the disease remain elusive; there is no uniform diagnosis – with current treatments restricted to symptom management.
Launched and sustained for the first three years by three ME charities and a private donor, the Biobank has never had state funding. This research facility is run by the London School of Hygiene & Tropical Medicine but there are no funds in place beyond 2016 to secure its future or widen its scope.
Research using Biobank samples has the potential to improve lives around the world as researchers strive to understand, diagnose, treat and one day cure the disease.
The Biobank is cost-effective as researchers can conduct their studies without recruiting additional participants themselves. Rather, they can use biological samples and data already collected and stored according to rigorous scientific protocols.
To help the Biobank improve biomedical research on ME/CFS, which one day could lead to a cure.
Activities» Take full advantage of the unique fundraising tools provided by the Big Give.
» Use the latest web-sourced crowd-funding techniques, including the Thunderclap.
» Source first-class video material, to improve the level of promotional support – possibly commissioning original material.
What success will look like
Having a significant amount of money in hand at the end of the Challenge to hand over to the team at LSHTM.
To enable the Biobank to provide blood samples to researchers who require them
Activities» With LSHTM, use our well-established access to researchers through the relevant ME/CFS research forums to publicise the availability of the samples.
» Cover staff time linked to processing applications to use samples (including peer review), identifying and sending samples, creating datasets, etc
What success will look like
By regular reporting on outcomes in our various print and digital publications, and feeding results through to the relevant ME/CFS research forums.
To collect more blood samples
Activities» Use our regular interactions and promotional skills to encourage people with ME/CFS to participate. Participation enriches the data and sample sets.
» Collect longitudinal data (analysing samples over a long period of time) – a key asset of this initiative – through participant follow-ups.
What success will look like
By regular reporting on outcomes in our various print and digital publications, and feeding results through to people who are suffering with ME/CFS.
The Biobank is a resource of tremendous value in the international effort to find treatments for this poorly understood illness, addressing the frustrations of the clinicians and those suffering from ME/CFS who are urgently looking for answers.
The Biobank continues to be supported by the charities critical to its establishment, including the ME Association, which publicise its work and seek support among the community of people with ME/CFS.
The main risk that might impact ‘crowd-funding’ is that this project could seem less attractive to the patient community than individual drug trials which patients already support with passion and fervour.
It will be important to show that the UK ME/CFS Biobank is an extraordinary resource for ME/CFS research.
We will also seek to persuade other UK charities not to run similar appeals at the same time.
As a priority, we will arrange a photocall of a cheque presentation and send reports of that event to each donor. We also will report widely on our website, on our printed publications, active Facebook page and on our Twitter feed. We will make every effort to obtain press and broadcast coverage,
Budget - Project Cost: £100,000Loading graph....
Amount Heading Description £100,000 Donations Donations to sustain the work of the UK ME/CFS Biobank.
The project has attracted UK-wide and international support.
Samples for the UK ME/CFS Biobank are processed and stored within the state-of-the-art University College London/Royal Free Hospital Biobank.
Those working on the Big Give Christmas Challenge are either employed by the ME Association, under contract or a trustee of the charity. A member of the LSHTM team provides support.
People with ME/CFS worldwide (and their carers), who suffer from ignorance of the cause of this severely disabling illness, lack of reliable treatments and paucity of knowledge among health care providers. Many are left with no diagnosis or meaningful treatment. Historically, research funding is woefully low compared to similarly disabling illnesses. In the UK alone, 250,000 children and adults have ME/CFS. A quarter are housebound, with some so ill they become bedbound and need to be tube-fed.
We are part of the three-charity consortium that has worked closely with LSHTM to successfully the BioBank and we have been intimately involved with its work for the past three years, through the efforts of our medical adviser Dr Charles Shepherd. Our other partners have been Action for ME, ME Research UK and a private donor.
We know the personnel involved and share in their activity monitoring and future planning as a member of their formal steering group.
Read more about the Charity running this project.
Tony Britton, Publicity Manager, ME Association
Tony will develop ideas and strive to make sure that targets are met. This is his third year of work on the charity's Big Give Christmas Challenge.
Helen Hyland, Fundraising Assistant, ME Association
Helen recently joined the ME Association and will work closely with Tony to ensure that we cover all angles.
Dr Charles Shepherd, Hon Medical Adviser, ME Association
Charles is our point of reference for all professional matters to do with the project, and has been involved with the Biobank since its inception.
Dr Luis Nacul, Principal Investigator, UK ME/CFS Biobank
Luis is a public health consultant at LSHTM who has a senior role at the Biobank. He will ensure the Biobank works to the highest standards.