UK ME/CFS Biobank

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The UK ME/CFS Biobank

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.

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, from 2015 we will continue to support it as a major investor.

This Biobank is the only such project in the UK aimed at the study of ME/CFS and was the first of its kind in Europe. It has currently obtained 12,500 aliquot samples from 243 people with very carefully defined ME/CFS (Canadian Consensus and CDC 1994 (Fukuda) criteria)); including 19 with the severe form of the illness.

It has also collected 5,500 samples from 101 healthy controls and 3,000 samples from 44 people with multiple sclerosis – which act as an additional control if a research group wants to compare results with another neurological disease that can include chronic fatigue and other ME/CFS-like symptoms.

Benefits

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 seeking to 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.

Project funding

ME Association investment from the Ramsay Research Fund for this project has been approximately £40,000 per year for the first two years, and this represents the largest and continuing commitment to a project the Ramsay Research Fund has taken on to date.

Additional funding during this 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.

If you would like to support the MEA then you can:

  • Donate to the MEA here.
  • Contact the ME Association by phone: 01280 818968

Additional funding

In 2013, the UK ME/CFS Biobank was awarded a research grant of over £1million from the National Institutes of Health in America to carry out a three-year study into the role of viral infection and immune system dysfunction in ME/CFS.

In 2014, The ME Association Big Give Christmas Appeal raised an additional £40,000 from public donations to help secure the future of the Biobank.

More information:

LSHTM Biobank website: Here.

LSHTM Biobank Frequently Asked Questions: Here.

LSHTM Report on first two years of the ME/CFS Biobank: Here.