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Fatigue: Biomedicine, Health & Behavior Volume 10, 2022 - Issue 4
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Research Articles

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

Sarah Tysona School of Health Sciences, University of Manchester, Manchester, UKCorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0001-6301-8791View further author information
ORCID Icon,
Kristina Stanleyb Two Can Associates, Ross-on-Wye, UKView further author information
,
Toto Anne Gronlundc James Lind Alliance, Southampton, UKView further author information
,
Sian Learyd Sheffield, UKView further author information
,
Mike Emmans Deane Action For ME, Bristol, UKView further author information
,
Claire Dransfieldf Department of Health Sciences, University of York, York, UKView further author information
,
Helen Baxterg 25% ME Group, UKView further author information
,
Rachel Ellioth National Arts Organisation and Charity, UKView further author information
,
Rachel Ephgravei ME Research Collaborative, UKView further author information
,
Monica Boltona School of Health Sciences, University of Manchester, Manchester, UKView further author information
,
Annette Barclaya School of Health Sciences, University of Manchester, Manchester, UKView further author information
,
Gemma Hoyesj University of Newcastle upon Tyne, Newcastle upon Tyne, UKView further author information
,
Ben Marshk Doctors with ME, UKView further author information
,
Russell Flemingl M E Association, Buckingham, UKView further author information
,
Joan Crawfordm Mersey Care NHS Foundation Trust, Liverpool, UKView further author information
,
Ann Westn UKView further author information
,
Opal Webster-Phillipso ME/CFS Alliance, UKView further author information
,
Cristina Bettsp ME Research Collaborative, UKView further author information
,
Susan O’Sheaq Stockport NHS Foundation Trust, Stockport, UKView further author information
,
Vinod Patelr University of Warwick, Nuneaton, UKView further author information
&
Sonya Chowdhurye Action For ME, Bristol, UKView further author information
 show all
Pages 200-211 | Received 08 Jun 2022, Accepted 23 Jul 2022, Published online: 30 Sep 2022

References

  • World Health Organisation. International statistical classification of diseases and related health problems. 2016
  • Nacul LC, Lacerda EM, Pheby D, et al. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med. 2011;9:91.
  • Afari N, Buchwald D. Chronic fatigue syndrome: a review. Am J Psychiatry. 2003;160(2):221–236.
  • Nacul L, Authier FJ, Scheibenbogen C, et al. On behalf of the European network on myalgic encephalomyelitis/chronic fatigue syndrome (EUROMENE): expert consensus on the diagnosis, service provision, and care of people with ME/CFS in Europe. Medicina (B Aires). 2021 May 19;57(5):510.
  • NICE guideline [NG206]. (2021). Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management. www.nice.org.uk/guidance/ng206. Last accessed May 2022.
  • Hunter RM, James M, Paxman J. (2018). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: counting the Cost—Full Report. Counting-the-Cost-CFS-ME.pdf (2020health.org).
  • Falk Hvidberg M, Brinth LS, Olesen AV, et al. The health-related quality of life for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PloS One. 2015;10(7):e0132–e0421.
  • Radford G, Chowdhury S. (2016). ME/CFS Research Funding: an overview of activity by major institutional funders included on the Dimensions Database. Action for ME. Microsoft Word - Research scoping report final copy for Board SC 8.8.16 CO (actionforme.org.uk) (last accessed February 2022).
  • The ME/CFS Priority Setting Partnership. Defining Future ME/CFS Research. (2022). Defining future ME CFS research - report design (nihr.ac.uk) Last accessed May 2022.
  • The James Lind Alliance Guidebook v10. (2021). JLA-Guidebook-Version-10-March-2021.pdf (nihr.ac.uk) (last accessed May 2022).
  • Sharpe MC. A report–chronic fatigue syndrome: guidelines for research. J Roy Soc Med. 1991;84:118–121.
  • Fukuda K, Straus SE, Hickie I, et al. Chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Int Med. 1994;121(12):953–959.
  • Valdez AR, Hancock EE, Adebayo S, et al. Estimating prevalence, demographics, and costs of ME/CFS using large scale medical claims data and machine learning. Front Pediatrics. 2019;8:412.
  • Office for National Statistics. (2021). National identity, ethnic group, language and religion question development for Census 2021. National identity, ethnic group, language and religion question development for Census 2021 - Office for National Statistics (ons.gov.uk) (last access August 2022).

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