The UK ME/CFS Biobank was launched in 2011, and it is led and managed by the CURE-ME research team at the London School of Hygiene and Tropical Medicine.
The physical Biobank is located at the Royal Free Hospital – 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
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.
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
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.
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, 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.
See also ‘Additional investment’, below.
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, 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.
Additional investment in the Biobank
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.
LSHTM Biobank team – List of publications: Here.
Visit the other pages in this section:
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