Research abstract:

Background:
The aim of this work was to involve patients in setting future priorities for myalgic encephalomyelitis (M.E.) research.

Methods:
A national on-line survey was developed collecting structured and unstructured data. Respondents were asked what they considered Action for M.E.’s first, second and third research priorities to be from a list of 13 pre-defined options. Individuals were also invited to provide any additional free text comments about Action for M.E.’s research priorities in general.

A total of 1144 individuals completed the on-line survey. Respondents were asked to indicate if:

• they had M.E. (n=3D822; 90.4%);
• were a supporting a member of Action for M.E (n=3D94; 10.3%);
• carer for someone with M.E. (n=3D66; 7.3%),
• professional with an interest in M.E. (n=3D26; 2.9%); or had a family member or colleague with M.E. (n=3D136; 15%).

Individuals were able to select more than one category as applicable.

Results:
The top five research priorities identified by the respondents were:

• disease processes to achieve a better understanding of the underlying
  pathology of M.E.;
• more effective treatments; faster and more accurate diagnosis;
• clinical course of M.E.;
• outcomes and prognosis;
• severely affected patients.

The lower research priorities identified were: sleep; economic research towards identifying the cost of ME for individuals and society; and psychological aspects.

Much of the unstructured data provided by respondents emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the underlying pathology of M.E. Three themes were identified in relation to this topic: accurate diagnosis and awareness; risk factors and causes; drug development and curative
therapies.

Conclusions:
Individuals affected by M.E. have clear views regarding the most important priorities for research investment. These tended to focus on disease processes to achieve a better understanding of the underlying pathology of M.E. and have been used to inform Action for M.E.’s ongoing research strategy.

Consulting patients in setting priorities in Myalgic Encephalomyelitis
(M.E.) research: findings from a national on-line survey, by Nicola Childs, Lisa Robinson, Sonya Chowdhury, Clare Ogden and Julia L. Newton in Research Involvement and Engagement Vol 1, 11, September 28, 2015