Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise

Tyson, Sarah; Stanley, Kristina; Gronlund, Toto; Leary, Sian; Dean, Michael; Dransfield, Claire; Baxter, Helen; Elliot, Rachel; Ephgrave, Rachel; Bolton, Monica; Barclay, Annette; Hoyes, Gemma; Marsh, Ben; Fleming, Russell P.; Crawford, Joan; West, Ann; Webster-Phillips, Opal; Betts, Cristina; O’Shea, Susan; Patel, Vinod; Chowdhury, Sonya

doi:10.1080/21641846.2022.2124775

Cited by 8 publications

(4 citation statements)

References 8 publications

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“…DecodeME's genetics question ("What, if any, significant genetic differences are there between people with-and those without-ME/CFS?") was identified as a priority first by the MERC and its PAG, before being confirmed as a priority by a wider section of the patient community in the results of the Priority Setting Partnership for ME/CFS 10 . Established participant selection criteria were further refined with PPI throughout.…”

Section: Patient and Public Involvementmentioning

confidence: 97%

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Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

et al. 2023

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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.

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Section: Patient and Public Involvementmentioning

confidence: 97%

“…One priority from a 2022 priority setting exercise facilitated by the James Lind Alliance 10 was "Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?"…”

Section: Introductionmentioning

confidence: 99%

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

et al. 2023

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“…Similarly, “Action for M.E.” in England and Wales aim to spread awareness and education around ME/CFS and raise funds to support these patients and their families. They have also recently worked together with the James Lind Alliance non-profit organisation, ME/CFS clinicians, and ME/CFS sufferers and caretakers to identify ME/CFS research priorities ( 593 ). The top three research priorities were found to be ( 1 ) understanding the biological mechanism behind PEM and how this can be treated or managed ( 2 ), which existing drugs used for other conditions would be useful in treating ME/CFS, and ( 3 ) finding accurate and reliable diagnostic testing for ME/CFS.…”

Section: Future Research Recommendationsmentioning

confidence: 99%

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease

Arron,

Marsh,

Kell

et al. 2024

Front. Immunol.

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating disease characterised by a wide range of symptoms that severely impact all aspects of life. Despite its significant prevalence, ME/CFS remains one of the most understudied and misunderstood conditions in modern medicine. ME/CFS lacks standardised diagnostic criteria owing to variations in both inclusion and exclusion criteria across different diagnostic guidelines, and furthermore, there are currently no effective treatments available. Moving beyond the traditional fragmented perspectives that have limited our understanding and management of the disease, our analysis of current information on ME/CFS represents a significant paradigm shift by synthesising the disease’s multifactorial origins into a cohesive model. We discuss how ME/CFS emerges from an intricate web of genetic vulnerabilities and environmental triggers, notably viral infections, leading to a complex series of pathological responses including immune dysregulation, chronic inflammation, gut dysbiosis, and metabolic disturbances. This comprehensive model not only advances our understanding of ME/CFS’s pathophysiology but also opens new avenues for research and potential therapeutic strategies. By integrating these disparate elements, our work emphasises the necessity of a holistic approach to diagnosing, researching, and treating ME/CFS, urging the scientific community to reconsider the disease’s complexity and the multifaceted approach required for its study and management.

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“…One priority from a 2022 priority setting exercise facilitated by the James Lind Alliance 10 was “Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?” To address this question, we took advantage of questionnaire data from DecodeME, a study launched in the UK in September 2022.…”

Section: Introductionmentioning

confidence: 99%

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Bretherick,

McGrath,

Devereux-Cooke

et al. 2023

NIHR Open Res

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Background: People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment. 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 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. Detailed questionnaire responses from UK-based participants who all reported being diagnosed with ME/CFS by a health professional provided an unparalleled opportunity to investigate, using logistic regression, whether ME/CFS severity or onset type is significantly associated with sex, age, illness duration, comorbid conditions or symptoms. 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 tend to have more comorbidities 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 infection at onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia. Conclusions: DecodeME participants differ in symptoms, comorbid conditions and/or illness severity when stratified by their sex-at-birth and/or infection around the time of ME/CFS onset.

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Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise

Cited by 8 publications

References 8 publications

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

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