The ME/CFS Biobank at the Royal Free Hospital in London
The ME Association Ramsay Research Fund covers all the basic running costs of the ME/CFS Biobank.
The ME/CFS Biobank Steering Group is chaired by MEA Medical Adviser, Dr Charles Shepherd.
It was launched in August 2011 following extensive consultation with professionals and patient representatives.
This new bioresource, which aims to enhance research into ME/CFS in relation to pathophysiology, biomarkers and therapeutic approaches, now has international acclaim with samples being used by research groups in various parts of the world.
Blood samples are collected from volunteers with very carefully diagnosed ME/CFS (Canadian and Fukuda diagnostic criteria) in designated locations and rapidly transported to the Royal Free Hospital in London – where the ME/CFS Biobank forms part of the University College London Biobank.
The samples are then processed into different components and stored before being released to researchers whose research proposals have gone through rigorous ethical approval and peer review.
The patient cohort is currently made up of 284 clinically-confirmed ME/CFS cases, 60 neurologist-diagnosed multiple sclerosis (MS) cases, and 135 healthy individuals. The cohort includes those with severe ME/CFS.
Blood samples are aliquoted (separated) into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells/granulocyte pellet, whole blood, and RNA (totalling 29,863 aliquots).
An extensive clinical dataset (700 clinical and socio-demographic variables) enables comprehensive phenotyping (sub-grouping). Potential re-use is conditional on ethical approval.
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.
RRF investment = Approx. £80,000 per year for 2018 and 2019.
Latest Biobank News
Press Release: People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis
A new study from the Biobank team looked at the functional status of people M.E. compared to those with MS and with people who were healthy.
The ME Association issued a press release which included comment from Dr Charles Shepherd, and Caroline Kingdon the lead author, who said:
“It is impossible to visit people severely affected by ME/CFS in their homes or to meet those more moderately affected, as I have had the privilege of doing, without recognising the injustice inherent in a system that often fails to recognise the existence of the disease or the disability it causes.
“I hope that this paper will help to validate the experiences of people with ME/CFS. Few other diseases are so stigmatised.”
The paper, ‘Functional Status and Well-Being in People with Myalgic Encephalomyelitis’, was published in Pharmacoeconomics – Open.
Funding Call for Researchers
In November 2017 – January 2018, the UK ME/CFS Biobank (UKMEB) raised around £17,000 from a crowdfunding campaign. The campaign was conducted with the assistance of partner organisations and charities.
We have decided to use these funds to release samples and data from the UKMEB free of charge to selected researchers. We want to enable more research into ME/CFS, and show our donors a clear pathway by which their generosity can be turned into real research on ME/CFS.
UK ME/CFS Biobank team receives largest event grant to continue biomedical research project!
ME Association trustees and staff were over the moon when we heard that the CureME team at the London School of Hygiene and Tropical Medicine had received a new grant of $2.1 million from the National Institutes of Health (NIH) in America.
The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.
UK ME/CFS Biobank second-largest in UCL Biobank collections
”We would like to thank the more than 600 people who have provided the 26,341 samples currently in storage at the UCL Biobank. In effect, each participant donated an average of 40 aliquots of blood (an aliquot is a small sample adequate for research purposes). Not only do we store samples and accompanying data from people with severe and mild/moderate ME/CFS, but our collection has also been greatly enriched by the participation of healthy controls and people with Multiple Sclerosis.”
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
What are the benefits of a M.E. Biobank in the UK?
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 is 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.
This represents the largest continuing commitment to ME/CFS research that 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.
In 2015, Dr Charles Shepherd (Medical Adviser 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 ME/CFS Biobank website
- LSHTM ME/CFS Biobank Frequently Asked Questions
- LSHTM ME/CFS Biobank – List of publications
Please Support M.E. Research
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 invest in even more biomedical research, please donate now:
- with either a single online donation, or click the button opposite
- 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.
Other pages in this section:
- UK ME/CFS Biobank
- Current Studies
- Post-Mortem Tissue Bank and Tissue Donation
- Pathology of CFS
- ME/CFS Disease Register
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