Consulting Patients in Setting Priorities in Myalgic Encephalomyelitis (M.E.) Research: Findings from a National Online Survey

Childs et al. (2015) full text summary PDF

For which topic were research priorities identified?

myalgic encephalomyelitis

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Myalgic Encephalomyelitis (M.E.) is a complex multi-system disorder that affects an estimated 250,000 men, women and children in the UK. Symptoms include post-exertional malaise, fatigue, sleep disturbance, widespread muscle and joint pain, and difficulties with memory and concentration. However, each patient experiences their own personal combination of symptoms, posing significant challenges for healthcare professionals in relation to diagnosis and management. Although there have been attempts to gather the views of those affected by M.E. regarding research that individuals would be willing to participant in, to date, there have been no comprehensive attempts to involve patients in determining the strategic direction of M.E. research at a national level. Given the lack of understanding regarding the disease mechanisms underpinning M.E .and the uncertainties associated with diagnosis and management, it would seem even more critical that the views of individuals affected by M.E. are listened to and acted upon when determining future research priorities.

What was the objective?

to involve patients in setting future priorities for myalgic encephalomyelitis research

What was the outcome?

a list of 5 research areas

How long did the research prioritization take?

May 2013 - June 2013

Which methods were used to identify research priorities?

survey

How were the priorities for research identified exactly?

Step 1: deriving priorities from Action for M.E. Patient Reference Group and Research Panel. Step 2: survey: participants were asked what they considered Action for M.E.'s first, second and third research priorities should be from a list of 13 pre-defined options

Which stakeholders took part?

1144 participants: 822 patients with M.E., 94 supporting a member of Action for M.E., 66 carers for someone with M.E., 26 professionals with an interest in M.E., 136 had a family member or colleague with M.E.

How were stakeholders recruited?

The survey was designed to be inclusive to anyone wishing to participate and was available on-line via Action for M.E.'s website, Facebook and Twitter for a 4 week period between 23.05.13 and 23.06.13.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.