Although it was not directly related to NHS organisations, I attended a meeting to disseminate the findings of recent research into M.E. (more usually known as Chronic Fatigue Syndrome, CFS). The workshop was run by the charity, Action for M.E. (AfME), which sponsors the National M.E. Observatory to undertake research into the condition.
The meeting was attended by about eighty people, many of whom were CFS sufferers or carers for CFS sufferers. This meant that the backgrounds and agendas of the presenters and the audience did not exactly match, which caused some difficulty.
AfME has joined with three academic bodies to conduct basic research into CFS, funded by Lottery money. The premise is that the only way to influence what happens to CFS sufferers is by publishing formal scientific research so that professionals take notice. Over three years this research group has conducted six unrelated projects.
However, this premise was not well explained. It seems to me that it harks back to the old top-down system of central government control. While research and published findings might be valuable, and they might indeed influence professionals, it is not obvious that publications are the only way to influence professionals, which is what is claimed.
A register of CFS sufferers
One project created a pilot disease register — a database of more than a hundred patients. (Did I hear that right? Only just over a hundred? Oh well, it was just a pilot.)
Unfortunately, deciding who has CFS and who doesn’t, in order to enter the right people in the database, depends on having criteria for diagnosing CFS, and there is no one agreed set of criteria.
This study searched GPs’ databases to find patients with CFS-like symptoms even if they had not been diagnosed as having CFS. This seemed to me to be the most interesting aspect of the study, but there was little detail about it in the presentation.
The prevalence of CFS
Another project aimed to estimate how many people in the population suffer from CFS. Unfortunately, deciding who has CFS and who doesn’t also requires criteria for diagnosing CFS.
Different criteria produce wildly different results. For example, estimates of the number of people suffering from CFS in the population vary from 1 in 10,000 population to 30 in 10,000 population, depending on the criteria used and the region studied. (Prevalence was highest in London, in this study.)
So although these numbers are nice to know, they are not actually very useful. The results of this study mainly highlight the lack of agreed criteria.
At one point while answering a question from the audience, the researcher became confused about how the criteria were related to each other. This, too, undermined any confidence in the usefulness of the study.
Qualitative social research
Three studies (or maybe only two, because two of them shared the same data?) had been conducted at the University of East Anglia (UEA). Unfortunately, no one from the UEA could attend to present them, and the previous sessions had overrun, so they were presented at high speed by someone else.
These studies asked small numbers of sufferers and professionals their opinions about CFS, collated what they said, and interpreted the results as a series of grossly overcomplicated diagrams. There were no significant findings, as far as I could tell.
A directory of services for CFS sufferers
A final project at UEA developed a national database of services for adults with CFS. The database has since been handed over to AfME to maintain, and you can search it here: ME/CFS Directory Services
I found only one service in Gloucestershire, which was when I searched for ‘Complementary therapist’. Searching for other kinds of service gave no results in Gloucestershire at all. And the so-called ‘complementary therapist’ was the British Society for Mercury Free Dentistry.
As my partner is a CFS specialist in private practice in Gloucestershire, a member and supporter of AfME, and a former contributor to AfME’s magazine, this is disappointing. It leads me to believe that the directory of services is not very useful.
Discussions and conclusions
Discussions with the audience tended to focus on individual problems and theories, rather than on the research. I felt that there was some frustration at the very basic level of the research presented, although audience members were glad to interact with anyone who has expert knowledge of CFS.
The meeting took place in a gloomy and noisy venue (a Birmingham hotel) with poor audio-visual support and uncomfortable seating. The three presenters who actually turned up did not seem well prepared, and they did not seem to understand their audience of CFS sufferers and carers. The content of the presentations was abstract and jargon-infested, and there were few actual examples. The coffee was terrible, though the biscuits were nice.
The early presentations overran, and so I did not stay for the planned group discussions and final feedback.
Overall, the meeting gave me the impression that much money had been spent with little to show for it. This cannot be the way to improve care in the NHS.