UK ME/CFS Biobank opens for business | 13 May 2016

May 13, 2016

Dr Charles Shepherd reports on the ME Awareness Day meeting at the London School of Hygiene and Tropical Medicine (LSHTM) to celebrate the opening up of the ME/CFS Biobank for the supply of blood samples to researchers who want to make use of them.

ME Awareness Day 2016 marked a major development in the work being carried out at the ME/CFS Biobank, which forms part of the main University College London Biobank at the Royal Free Hospital in Hampstead – where the ME/CFS sample collection is now the second largest in the UCL biobank!

The ME/CFS Biobank is now open for business and ready to start supplying blood samples, along with the anonymised clinical data from well characterised people with ME/CFS (who meet Canadian and/or CDC diagnostic criteria) that accompanies the samples to researchers anywhere in the world who want to make use of blood samples for lab-based research.

To celebrate the occasion, the Biobank team at LSHTM organised a meeting on Thursday 12th May to say thank you to everyone who has been involved with setting up what is now the most important piece of ME/CFS research infrastructure here in the UK and one that has become the recognised world leader in this area of research.

Dr Luis Nacul – Chief Investigator – opened the meeting by welcoming some of the many volunteers who have been donating blood samples and thanking the three charities (Action for ME, ME Research UK and the ME Association's Ramsay Research Fund), along with an anonymous MEA donor, for funding the first phase of the work.

This has involved a detailed clinical assessment and full clinical examination of everyone who has donated blood; rapid transportation of the samples to the Royal Free Hospital in London; followed by processing and storage of the samples in the UCL Biobank.

Funding for the next two years work at the ME/CFS Biobank – approximately £80,000 – has now been provided by the MEA Ramsay Research Fund.

There is a very impressive list of achievements to report:

All the targets for collecting blood samples – not just from people with ME/CFS (including a group with severe ME/CFS who have been visited at home) but also from people with multiple sclerosis (MS) and from healthy controls – have been met.

So we now have samples from 229 people with ME/CFS; 47 with MS and 108 healthy controls – some of whom have donated more than one blood sample.

This means the Biobank now has over 26,000 aliquots ready to be used for biomedical research all around the world.

And as the journey progressed the Biobank received an enormous vote of confidence from the prestigious National Institutes of Health in America – who awarded a £1 million grant to carry out a three year study looking at the virology and immunology of ME/CFS – which is still in progress.

Members of the Biobank team and collaborators at the LSHTM – Caroline Kingdon (research nurse), Dr Eliana Lacerda, Dr Jackie Cliff, Professor Helen Dockrell – then gave a series of short presentations on some of the research that is already being carried out on both the blood samples and on the clinical data that has been acquired.

Current research studies include:

An immunological study looking at natural killer cell (NKC) function in ME/CFS.

A gene expression study which is looking at whether there is a distinct pattern of upregulated and downregulated genes in ME/CFS and whether this is different to the gene expression pattern seen in MS and in the healthy controls.

Examination of the huge amount of clinical data in relation to the use and overlap of different diagnostic criteria for ME/CFS (ie Canadian, CDC, IoM), demographic status – age, sex etc; disability status – again when compared to MS; and economic cost in terms of lost income.

Amit Arankumar, a medical student from the University of California,USA, who has joined the ME/CFS Biobank for a year on a scholarship, also gave a very interesting presentation on the virology study he has designed and set up.

Closing the meeting, Dr Charles Shepherd, Chairman of the ME/CFS Biobank Steering Group, commented:

“Now that we are able to start releasing blood samples to the research community, there will be some very significant advantages relating to research into the cause and treatment of ME/CFS:

First is speeding up the process of laboratory-based research into ME/CFS – because high quality samples and accompanying clinical data from people with well-characterised ME/CFS is already there.

“Second is making it cheaper to carry out lab-based research studies.

“Third is making samples and clinical data available to new researchers who may not have had easy access to patients with ME/CFS up until now.

“So there is lots of good news to celebrate this evening.

“The ME Biobank is firmly established as a vital new part of the ME/CFS research infrastructure.

“It has become a world leader in this area of research when it comes to the quality of the blood samples, the range of blood constituents it can provide, and the high quality clinical data that accompanies the samples.

“And the Biobank is now Open For Business!”

More information on the ME Biobank:


Work connected to the NIH grant:

The will be a formal announcement for researchers requiring blood samples in due course.

Dr Charles Shepherd
Hon Medical Adviser, MEA
Chairman – ME/CFS Biobank Steering Group

3 thoughts on “UK ME/CFS Biobank opens for business | 13 May 2016”

  1. Such good and encouraging news. Many thanks to MEA and Dr Shepherd for facilitating this wonderful project.

  2. This is an extraordinary achievement & the culmination of years of hard work & perseverance by so many dedicated people. As a patient, I appreciate your efforts very much indeed – thank you.

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