The UK ME/CFS Disease Register
Position Statement 23rd August 2016
Action for M.E., the ME Association and ME Research UK are jointly releasing this statement to update our supporters on the ME/CFS Disease Register project, which has now come to an end.
The maintenance and regular update of all the information held in the Disease Register is no longer a priority for the limited research funds available to us, and we explain why this is below.
The ME/CFS Disease Register project was begun in an effort to develop a population-based disease register for the illness. Led by Prof Derek Pheby, it was housed initially alongside the ME/CFS biobank at the London School of Hygiene and Tropical Medicine, and was one of six sub-projects funded by the Big Lottery Fund as part of the National ME/CFS Observatory project. Some of the participants were originally recruited via general practices based in London, East Yorkshire and East Anglia, which took part in the epidemiological research of the Observatory project where data was utilised in a number of projects, while other participants had been part of a historical database of housebound and bedbound patients. In 2011, a report describing the nature and feasibility of the plans for a disease register was published in BMC Research Notes, and was well received.
For logistical reasons, the ME/CFS Disease Register was relocated to Buckinghamshire New University in a move sponsored by Action for ME, the ME Association and ME Research UK, and an analysis was undertaken to examine the robustness of the data and gauge the usefulness of the resource over the longer term. As part of this investigation, a methodological approach was used to develop a five-factor model (comprising immunological, musculoskeletal, two neurological and cardiovascular sub-scales) to test fit against diagnosis data.
While the model was found to have an acceptable internal reliability, it was realised that a considerable amount of further work would be needed if robust clinical information was to be obtained from the data, and that much larger sample sizes would be required going forward if the aims of a successful Disease Register – to foster enhanced care coordination, better health care, and improved patient outcomes – were to be realised.
In addition, since the planning of the Disease Register some years ago, there has been a considerable change in the way ME/CFS patients are recruited to research studies. The ME/CFS biobank has developed its own very efficient recruitment procedures, and no longer requires a link with a Disease Register. Similarly, it is not been possible to move forward with the setting up of a dedicated post-mortem research facility and tissue archive associated with the necessary regularly updated register with follow-up over the long term. In addition, Prof Stephen Holgate is putting together a ‘Grand Challenge’ research application that will involve the collection on up-to-date clinical data and biological samples from around 10,000 people with ME/CFS.
Research funding is all about priorities and, sadly, it was decided for the reasons above that the maintenance and regular update of all the information held in the Disease Register was no longer a priority for the limited research funds available to the charity sector. We would like to thank Prof Derek Pheby who initiated the Disease Register project, and everyone at the ME Observatory, the London School of Hygiene and Tropical Medicine, and Buckingham New University who have been involved in the Disease Register during its existence.
If a good case for re-establishing an ME/CFS Disease Register occurs at some point in the future, and we have the necessary support from a research centre where it can be managed and located, then Action for M.E., the ME Association and ME Research UK would be willing to look at any new proposal from the research community.