The ME Biobank - The ME Association

The ME Biobank at the Royal Free Hospital in London

The ME Association Ramsay Research Fund covers all the basic running costs of the ME Biobank and Dr Charles Shepherd is Chair of the Biobank Steering Group.

The Biobank was launched in August 2011 following extensive consultation with professionals and patient representatives.

To date the Ramsay Research Fund has invested c.£380,000 in the M.E. Biobank which will cover running costs until 2021 when we hope the project will be self-sustaining.

This bioresource, which aims to enhance research into M.E. 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.

They are then rapidly transported to the Royal Free Hospital in London – where the ME Biobank forms part of the University College London Biobank.

As at July 2019, the patient cohort comprises 314 ME/CFS cases comprising 236 mild/moderate and 78 severe. 37 chronic fatigue (non-ME/CFS) cases, 69 multiple sclerosis (MS) cases, and 133 healthy individuals.

Blood samples are aliquoted (separated) into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells/granulocyte pellet, whole blood, and RNA (totalling 33,442 aliquots).

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.

An extensive clinical dataset (700 clinical and socio-demographic variables) enables comprehensive phenotyping (sub-grouping). Potential re-use is conditional on ethical approval.

Making these samples available to other researchers increases the chances of achieving much-needed breakthroughs in the aetiology and treatment of ME/CFS, in the most cost-effective manner. The list of current collaborators and their stories can be found on the M.E. Biobank website (Cure M.E.).

From the very beginning, the ME Association Ramsay Research Fund has provided significant funding 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. Latest RRF investment = £100,000 for the years 2020-21.

Latest Biobank News

October 2019
The ME Association announces additional £100,000 investment in Biobank

“Over the past two years we have released samples to six research institutions in the UK alone, and many more in Europe, South America, Asia and the USA.

“The new, two-year award will build on that success, enabling further releases and the replenishment of depleted samples.

“The award will also enable further communications and fundraising projects, raising the Biobank’s income and reducing its reliance on grant funding.

“The funding will also allow the team to continue to work to develop biobanks elsewhere in the world, using protocols that are harmonised with the UKMEB’s. Exciting work is already underway in the USA, Canada and Australia.

“The UKMEB continues to be an example to biobanks in ME/CFS and in other fields and has published its work in peer-reviewed journals and presented at major conferences.”

Jack Butterworth, Project Manager, ME Biobank.

April 2019
MAIT Cells are Increased in Severe ME/CFS

Dr. Jackie Cliff published results from part of a National Institutes of Health (NIH) grant examining immune cell function in ME/CFS.

They looked at various aspects of immune function, including levels of antibodies against herpes viruses and the number and function of Natural Killer (NK) cells and T-cells.

However, their most significant finding was of increased levels of a subtype of T-cell called MAIT (Mucosal associated inverted T-cell) cells in severe ME/CFS patient samples.

In this review, we go into more detail about the findings from this latest piece of biomedical research, giving possible explanations and discussing what this means for future research.

April 2019
Evidence of Clinical Pathology Abnormalities in People with ME/CFS

“We found that people with ME had lower creatine kinase (CK) levels than healthy controls, and that CK was significantly lower in people with severe ME/CFS compared to those who were mild/moderately affected.”

April 2019
Dr Luis Nacul appointed to new position in Canada

“I would like to add my congratulations to Luis on being appointed to this very prestigious position in Canada and wish him well with his new life in Vancouver.

“Luis is an outstanding clinician and researcher and the other good news is that he will still be able to continue with his work here in the UK at the M.E. Biobank and on the NICE guideline development committee.”

Dr Charles Shepherd

December 2018
A Disease-Specific Biobank for Advancing Clinical Research Into ME/CFS

This narrative paper describes how people with ME/CFS, together with a multidisciplinary team of researchers, have established the UK ME/CFS Biobank (UKMEB), a unique research infrastructure specifically designed to expedite biomedical research into ME/CFS.

November 2018
Hand Grip Strength as a Clinical Biomarker for ME/CFS and Disease Severity

Hand Grip Strength (HGS) is markedly reduced in ME/CFS, particularly in patients with more severe disease, and may indicate muscle and fatigue related symptoms. HGS is a potential diagnostic tool in ME/CFS, and could also be used to enhance patient phenotyping and as an outcome measure following interventions.

March 2018
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 Caroline Kingdon the lead author, who said:

“I hope that this paper will help to validate the experiences of people with ME/CFS. Few other diseases are so stigmatised.”

What are the benefits of an 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. With the ME Biobank you are funding not just one project, but considerable future research as well.

Additional Investment…

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 enabled important research on the immunology and genetics of ME/CFS.

More information:

The ME Association

Ramsay Research Fund

We are a national charity working hard to improve the lives of people devastated by an often-misunderstood neurological disease.

We believe biomedical research offers the best hope to people affected by M.E. If you would like to support our investment then please donate to the Ramsay Research Fund.

Just click the image opposite to visit our JustGiving page for single donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!

ME Association Registered Charity Number 801279

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