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Background: People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) daily experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment or brain fog. Despite numbering 0.2-0.4% of the population, no laboratory test is available for their diagnosis, no effective therapy exists for their treatment, and no scientific breakthrough regarding their pathogenesis has been made. It remains unknown, despite decades of small-scale studies, whether individuals experience different types of ME/CFS separated by onset-type, sex or age. Methods: DecodeME is a large population-based study of ME/CFS that recruited 17,074 participants in the first 3 months following full launch. Their detailed questionnaire responses provided an unparalleled opportunity to investigate illness severity, onset, course and duration. Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known previously was that females’ comorbidities and symptoms tend to be more numerous than males’. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity. Five different ME/CFS onset types were examined in the self-reported data: those with ME/CFS onset (i) after glandular fever (infectious mononucleosis); (ii) after COVID-19 infection; (iii) after other infections; (iv) without an identified infectious onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Conclusions: This revealed that people with a ME/CFS diagnosis are not a homogeneous group, as clear differences exist in symptomatology and comorbidity.

Myalgic encephalitis (M.E.) is a common condition, the cause of which is not known and there are no treatments available. In this study the national patient support group Action for M.E. sought the opinions of their members via an online survey as to what they felt should be future priorities for M.E.Respondents were asked what they considered first, second and third research priorities to be from a list of 13 pre-defined options. Individuals were invited to provide additional free text comments about Action for M.E.'s research priorities in general. Of the 1144 respondents: 822 had M.E.; 94 were a supporting a member of Action for M.E. ; 66 were carers for someone with M.E.; 26 were professionals with an interest in M.E.; 136 had a family member or colleague with M.E. Individuals selected more than one category as applicable. The top five research priorities identified were: disease processes to achieve a better understanding of the causes of M.E.; more effective treatments; faster and more accurate diagnosis; clinical course of M.E.; outcomes and natural history; and severely affected patients. Least popular priorities were: sleep; economic research towards identifying the cost of ME; and psychological aspects. Much of the free text comments emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the causes 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. In conclusion; individuals affected by M.E. have clear views regarding priorities for research investment. These have informed Action for M.E.'s ongoing research strategy and ultimately will inform national and international research priorities.The aim of this work was to involve patients in setting future priorities for myalgic encephalomyelitis (M.E.) research.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 = 822; 90.4 %); were a supporting a member of Action for M.E. (n = 94; 10.3 %); carer for someone with M.E. (n = 66;7.3 %), professional with an interest in M.E. (n = 26;2.9 %); or had a family member or colleague with M.E. (n = 136;15 %). Individuals were able to select more than one category as applicable.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; and 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.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.