ME-CFS Research

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a long-term disabling medical condition, the predominant symptom of which is usually severe and overwhelming fatigue following mental or physical activity. Cognitive impairment, sleep disorders, pain, immune activation, gastrointestinal and autonomic abnormalities, and other debilitating symptoms can also occur. In the UK, ME/CFS affects approximately one out of every 500 people. There is currently no cure or standard treatment.

National CFS/ME Observatory

The CFS/ME Observatory was established in 2006 to investigate the epidemiology of and better characterize the disease, elucidate quality of life issues, explore the feasibility of creating a national disease register, and address other gaps in knowledge related to aetiology, diagnosis, and care.

Researchers at the London School of Hygiene and Tropical Medicine (LSHTM), in collaboration with the University of East Anglia (UEA), the Hull-York Medical School, and GP surgeries in these three regions, have undertaken:

an estimate of the incidence and prevalence of ME/CFS in three regions of England,
a pilot study establishing an ME/CFS disease register,
a systematic review exploring the needs of people with ME/CFS,
qualitative studies on expressed needs for equity in health and social care and health care practitioners’ perspectives on ME/CFS, and,
a cross-sectional study documenting functional status and wellbeing of people with ME/CFS.

Post-mortem tissue bank and biobank feasibility studies

Two qualitative studies were carried out after the above projects to investigate the feasibility of establishing an ME/CFS post-mortem tissue bank and biobank.

Focus group discussions held as part of these studies revealed support among people with ME/CFS for establishing tissue banks, assuming patients were well-defined (using a “good” case definition); rigorous protocols were in place for collection, transport, and storage of samples; and all ethical issues were thoroughly considered.

While discussing the merits of contributing to a biobank, focus group participants related that, with this disease, “you feel sort of powerless and so much is taken away from your life”, but that “if we want not only ourselves to get better, but for other people to get better, we need to be proactive in assisting research, and this is one of the ways that we could do it", and that participating in a biobank would be “taking part in a new exciting step forward”.

Building on these feasibility studies, the ME/CFS Biobank project was launched in August, 2011. This project will establish the UK’s first biobank of blood samples for research on ME/CFS. The project will be led and managed by LSHTM and samples will be processed and stored at the University College London / Royal Free Hospital Biobank.

In the future, the ME/CFS research group intends to investigate immunological abnormalities, presence of viruses, and gene expression profiles in people with ME/CFS in an effort to discover biomarkers for and causes of ME/CFS, and to continue to develop an interdisciplinary and international network of ME/CFS researchers.

Research has been funded by the Big Lottery Fund, Action for ME, the ME Association, and ME Research UK.

For more information, contact Dr. Luis Nacul, Dr. Eliana Lacerda (tel: 020 7958 8134), or Ms Erinna Bowman (tel: 020 7927 2094).

Publications

Collaborators

Chief Investigator (LSHTM): Dr. Luis Nacul

Project Lead (LSHTM): Dr. Eliana Lacerda

Observatory Project Coordinator (Buckinghamshire New University): Dr. Derek Pheby

Links