SURVEY OF PEOPLE WITH MYALGIC ENCEPHALOMYELITIS (ME) TO EXPLORE THEIR USE AND EXPERIENCES OF PHYSIOTHERAPY SERVICES IN THE UK

N. Clague-Baker¹, M. Bull², K. Leslie³, N. Hilliard⁴

Background: 250,000 people live with Myalgic Encephalitis (ME) in the UK, this compares to 100,000 living with Multiple Sclerosis. In 2019, a survey by MEAction of 1,906 people with ME, identified that over 50% of people who attended specialists ME clinics, employing physiotherapists, were unsatisfied with the services. People with ME (PwME) are also seen in regular musculoskeletal, community, neurological and paediatric physiotherapy services but the views of PwME related to these services are not known.

Purpose: The aim of this present survey, therefore, was to identify the experiences of PwME of physiotherapy services throughout all areas of physiotherapy practice.

Methods: A survey comprising of open and closed questions was devised by four researchers with feedback from PwME and representatives of the ME Association. The ME Association website hosted the survey from August 2019 to October 2019. An information sheet was provided on the website and consent assumed if participants completed the survey. All data was anonymous and data held securely on the University of Leicester databases. Qualitative and quantitative data analysis was completed by the four researchers.

Results: 441 PwME completed the survey, respondents ranged from paediatric to adult and mild to severe ME. 54% had negative experiences of physiotherapy and 53% said that the physiotherapy had made them worse. Of those who had a positive experience with physiotherapy, 70% said it still did not help their ME. Themes included: types of treatments, co-morbidities, symptoms, positive experiences and negative experiences such as: “I was made to cycle / row / cross train under threat the course would end if I refused… it set off a major relapse which lasted weeks” and “My symptoms definitely increased during the physio course. I am deeply disturbed by the level of prejudice, negligence and dishonesty still present in the NHS when dealing with ME patients.”

Conclusion(s): This survey identified that a significant number of PwME are having negative experiences of physiotherapy that made their symptoms worse. It is recognised that this is a small sample of PwME and further research is needed to fully understand the experiences of PwME of physiotherapy.

Implications: The implications of this research are significant for physiotherapists. PwME are treated by physiotherapists either directly for their ME or for other conditions in a variety of treatment settings. It is imperative that physiotherapists are aware of the latest physiological evidence so they can treat PwME safely and without adverse effects.

Funding, acknowledgements: No funding was received for this project

Keywords: Myalgic Encephalomyelitis, Experiences, Exercise

Topic: Disability & rehabilitation

Did this work require ethics approval? No

Institution: University of Leicester

Committee: Not Discussed with the Ethics Department

Reason: This was a service evaluation