Resume CFS

 

In 2006 The Big Lottery Fund agreed to make available to the charity Action for ME (AfME) £½ million to establish a National ME/CFS Observatory “To undertake research into the illness.” The funding totalled £503,000 the largest grant for medical research ever made by the Lottery


AfME appointed Dr Derek Pheby (now Prof. Derek Pheby) to coordinate a three-year multi-faceted programme of epidemiological and qualitative social research. This comprised six sub-projects, i.e.:

  1. Disease Register for ME/CFS – pilot study.

  2. Epidemiological study of the occurrence and distribution of ME/CFS in East Anglia, East Yorkshire and London.

  3. Epidemiological study of factors affecting quality of life study of adults with ME/CFS and carers.

  4. Impact of social inequalities on the experience of people living with ME/CFS.

  5. Identification of best practice in professional care of people with ME/CFS.

  6. Systematic review of services for people with ME/CFS in England (leading to the establishment of a searchable database, hosted on the AfME website

This work was undertaken by three institutions with suitable research departments and with a geographical spread. These were:

  1. University of East Anglia (UAE)

  2. London School of Hygiene and Tropical Medicine (LSHTM)

  3. University of Hull

The fourth member of the consortium was AfME.

The initial stage has recently been completed (September 2010). The results are in the process of being published in the scientific literature. Following the Pilot it is hoped to extend this work over the rest of the UK. However it is recognised that introducing more partners, developing the plans and, above all, securing the funding will all take time.

Resume CFS is particularly interested in supporting:-