Research involving Professor Damien Ridge, Professor of Health Studies at the University of Westminster, into the care of people with chronic fatigue has been disseminated by the National Institute for Health Research (NIHR) as an important new study.
The research shows that people with chronic fatigue want flexible, empathetic care and for doctors to listen to them. It was featured by NIHR, the nation's largest funder of health and care research, on the alerts section of its website which provides short, easy-to-understand summaries of the latest important health research to promote its use by all members of society.
People with chronic fatigue syndrome (CFS) have extreme tiredness which lasts at least four months. The condition is also known as myalgic encephalomyelitis (ME). Other common symptoms of CFS/ME include headaches and problems with sleep, memory or concentration.
This research, carried out in conjunction with Keele University, University of Southampton and University of Portsmouth suggests that people with CFS/ME often feel invisible and dismissed by doctors. This is made worse by the fact that healthcare professionals have difficulty recommending effective treatment for CFS/ME. There is no ‘gold standard’ therapy and many potential treatments are hotly debated by doctors and patients.
In this study, researchers pooled data from 47 studies that looked at patients' experiences of CFS/ME and their relationships with healthcare professionals. The findings suggest doctors should take time to listen to the views of their patients, even if they disagree with them, and work together to find treatments that minimise the impact of the condition on the person’s daily life.
Commenting on the study Professor Damien Ridge, Professor of Health Studies, said: “We uncovered unique insights that only patients themselves can provide. They described the approaches for CFS/ME that help them. This understanding is a vital step if we are to make progress in the commissioning and provision of care for people with the condition.”
Julie Wright, a patient with CFS, added: “Reading this analysis was moving for me, as someone with a diagnosis of CFS. My experience of support from GPs has been well-meaning, but they are clearly baffled by the constantly-changing advice on treatment and the lack of any consistently helpful approach. They didn't know how best to engage with me. I would really like professionals involved in supporting people with CFS/ME to read this to better understand what affected people go though. It would be great if the research prompted commissioners to fund focused training developed in collaboration with a patient advisory group, as the researchers suggest.”
Find more information on the NIHR website.