The UK ME/CFS Biobank was launched in 2011. It is led and managed by the well-established CURE-ME research team at the London School of Hygiene and Tropical Medicine. The ME/CFS Biobank is located at the Royal Free Hospital in London – where it forms part of the University College London Biobank.
From the very beginning, the ME Association Ramsay Research Fund has provided significant finance for this charity-backed project and because we see real value in this initiative, we will continue to support it as a major investor.
This is the only such project in the UK aimed at the study of ME/CFS and the supply of samples to outside researchers. It has successfully obtained around 30,000 aliquot samples from people with very carefully defined ME/CFS (Canadian Consensus and CDC 1994 (Fukuda) criteria)); including those with the severe form of the illness who have been visited at home.
It has also collected samples from healthy controls and from people with multiple sclerosis – which act as an additional control group if researchers want to compare results with another neurological disease that can include chronic fatigue and other ME/CFS-like symptoms.
LATEST BIOBANK NEWS
New research from Biobank team in The Open Journal of Bioresources (open access):
Lacerda et al. The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis
The UK ME/CFS Biobank was launched in August 2011 following extensive consultation with professionals and patient representatives.
The bioresource aims to enhance research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), related to pathophysiology, biomarkers and therapeutic approaches.
The cohort includes 18–60 year olds, encompassing 284 clinically-confirmed ME/CFS cases, 60 neurologist-diagnosed multiple sclerosis (MS) cases, and 135 healthy individuals.
The Biobank contains blood samples, aliquoted into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells/granulocyte pellet, whole blood, and RNA (totalling 29,863 aliquots).
Extensive dataset (700 clinical and socio-demographic variables/participant) enables comprehensive phenotyping. Potential reuse is conditional to ethical approval.
Seasonal greetings and good news from the UK ME/CFS Biobank team (highlights):
“We have completed recruitment of over 500 participants, thanks to the support of charities, private donations and a NIH grant, which have enabled the testing of exciting hypotheses related to immune mechanisms, genetic expression and evidence of viral infection in ME/CFS. We expect to have results of many of our studies published in the first half of 2017.”
“A Christmas Appeal led by the ME Association raised funds to enable the opening of the Biobank to applications from external researchers in 2016. We have attracted considerable interest from researchers in the UK, other European countries, North and South America willing to benefit from our data and samples from well characterised cases of ME/CFS, all of whom have a medical diagnosis confirmed according to rigorous criteria.”
“The long-term sustainability of the UK ME/CFS Biobank is a priority for us. We are now preparing to submit an application to the Wellcome Trust on their Biomedical Resources Grant call early in the New Year, which we hope, if successful, will contribute to an increased capacity of the Biobank to support biomedical research in the field.”
An upbeat end-of-year message from the UK ME/CFS Biobank team (highlights):
“We are delighted to announce that we have reached our participant recruitment goals and have now banked close to 30,000 aliquots (blood samples) in the Biobank.”
“Some of the Biobank samples have already been accessed and are being used by teams of researchers here at the LSHTM as part of the work planned for the original NIH grant. We were excited to hear that Professor Eleanor Riley has been awarded $132,224 to further her team’s work exploring the associations between human herpesvirus infection and ME/CFS.”
“We know how precious and valuable each of these tiny tubes is, and the process for their distribution ensures that research proposals are robust and ethical and will help better understanding of the mechanisms of and possible treatments for ME/CFS.”
“We will prioritise research proposals that intend to test or generate new hypotheses on the pathophysiology of ME/CFS, improve diagnosis (biomarkers) and phenotyping, and/or basic science.”
WHAT ARE THE BENEFITS OF A BIOBANK?
One of the most difficult, most time-consuming and perhaps most important parts of any ME/CFS research study is getting a robustly-diagnosed representative sample of patients, together with appropriate controls, and making sure the sample is big enough for meaningful results.
The UK ME/CFS Biobank gives researchers an off-the-shelf solution because the hard work of diagnosing patients and collecting samples has already been done. That’s a major head start for any study, and will help to attract talented researchers from other fields as well as leading to better overall research.
But the Biobank provides much more than blood. Each sample comes with a great amount of relevant clinical and biological data: symptom questionnaires (SF36 for functioning, sleep, pain, and fatigue), clinical data such as weight and blood pressure, and a series of laboratory blood tests. This will again save time and money, but also allows researchers to investigate the relationship between particular findings e.g. cytokines and specific symptoms, or other clinical features.
The UK ME/CFS Biobank team will continue work to increase the number of blood donations and should shortly reach its goal of 510 participants, comprising 290 people with ME/CFS (including 50 severely affected – bed and/or home-bound), 75 people with Multiple Sclerosis and 145 healthy controls.
The team will actively promote the supply of samples to scientists who can demonstrate that they require them for useful and ethically approved ME/CFS research projects.
HOW WAS THE BIOBANK FINANCED?
ME Association investment from the Ramsay Research Fund for this project has been approximately £40,000 per year for the last two years, and this represents the largest continuing commitment to a project the Ramsay Research Fund has taken on to date.
Additional funding during the establishment period was kindly provided by Action for M.E., ME Research UK and a private donor, who is a member of The ME Association.
This project is an investment in all our futures and with the ME/CFS Biobank you are funding not just one project, but considerable future research as well.
HOW YOU CAN HELP
Please help us to build on our success and continue to expand our vital work. One day we will find the cause of ME/CFS and have an effective form of treatment. And with your help, that day could come much sooner.
If you would like to help The Ramsay Research Fund support even more biomedical research, please donate now:
- with either a single online donation
- by cheque (made payable to: The ME Association Ramsay Research Fund) to: The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF.
- by card donation over the phone to our head office (01280 818964)
Or, if you would like to fundraise for The Ramsay Research Fund, please start your online giving page, here.
ADDITIONAL INVESTMENT IN THE BIOBANK
In 2017, the UK ME/CFS Biobank applied for a Wellcome Trust Biomedical Resource and Technology Development grant to help increase the number of samples and contribute to the long-term sustainability of the biobank. In March it was announced that the application had successfully passed the first hurdle in the application process. We expect further news throughout 2017.
In 2015, Dr Charles Shepherd (Medical Advisor to the ME Association), became chair of the biobank steering group, underscoring ME Association commitment to what we believe is vital ME/CFS infrastructure.
In 2014, The ME Association Big Give Christmas Appeal raised £40,000 from public donations to help secure the future of the Biobank.
In 2013, the UK ME/CFS Biobank was awarded a research grant of over £1million from the National Institutes of Health in America. This three-year longitudinal study has enabled important research on the immunology and genetics of ME/CFS. 2017 Update: The research is nearing completion and the results may lead to the discovery of much needed disease biomarkers.
LSHTM Biobank website: Here.
LSHTM Biobank Frequently Asked Questions: Here.
LSHTM Report on first two years of the ME/CFS Biobank: Here.