The results of an extensive review into the perceived needs of almost 2,800 people with ME/CFS have been published online by a team from the national ME Research Observatory – which is coming to the end of its three-year funding by the Big Lottery.
The team – led by epidemiolgist Dr Derek Pheby – trawled through thousands of peer-reviewed studies and personal stories to find those which helped build up a picture of the things people with ME say they need to achieve wide-spread respect and recognition in the early 21st century.
A 30-page summary entitled ‘The self-expressed needs of people with CFS/ME: a systematic review” was published in the online journal “BMC Public Health” on 11 December 2009.
“That so many needs are unmet is surprising in developed nations and may be considered unacceptable by many”, commented the authors.
The idea for the review came from Maria de Lourdes Drachler, from the School of Allied Health Professionals at the University of East Anglia, with contextual design support from UEA colleagues Lee Cooper and Fiona Poland.
The researchers say they reviewed 4,713 titles and abstracts, 190 full texts of published papers, and 32 other studies. “The studies conveyed the needs of 2,788 people with CFS/ME, plus many more in over 180,000 on-line discussion postings.”
Dr Pheby commented:
“Assumptions are frequently made, by medical professionals and others about what constitutes a good outcome in ME. All too often the views, hopes and aspirations of people with ME themselves are the last things to be considered. This ground-breaking piece of research rectifies that omission, by bringing together in one report all the published research which does consider the question of what people with ME themselves want and need. It takes a wide approach, looking not only at medical outcomes but also at what people with ME need to enable them to function in the social environment, not only as patients, but also as family members, citizens, and members of the wider community.
“The report, prepared mainly at the University of East Anglia, is the first report from the National ME Observatory project to appear in the peer-reviewed scientific literature. The Observatory approach, from the outset, has been to place people with ME at the centre of the research process, from the project Steering Committee downwards, and this is the first of a series of reports which are putting that philosophy into practice.”
The full article is available for downloading here here.