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Consultations

(NICE) Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

03 September 2019

NICE are looking for evidence from the areas listed below for the guideline they are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: 

1. Studies that evaluate:

  • Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS.
  • Methods of monitoring and/or reviewing people with a diagnosis of ME/CFS

Evidence of trials that compare different strategies or different methods of monitoring and review. Systematic reviews, randomised controlled trials, non- randomised trials that are prospective or retrospective cohort studies will be considered for inclusion in the guideline.

Studies that report measurable outcomes on:

  • Mortality
  • Quality of life
  • Fatigue /fatiguability
  • Physical functioning
  • Cognitive function
  • Psychological status
  • Pain
  • Sleep quality
  • Treatment-related adverse effects
  • Activity levels
  • Return to school or work
  • Exercise performance measures.
  • Care needs
  • Impact on families and carers

Non comparative studies, promotional material, non-evidence-based assertions of effectiveness or opinion pieces will not be accepted.

2. Evidence on the experience of people who have had interventions for ME/CFS

Examples of evidence that explore and evaluate people’s experience of interventions for ME/CFS are required. Qualitative studies evaluating focus groups and interviews and surveys will be considered for inclusion in the guideline.

Case series, case studies, individual accounts of experience, promotional material, non-evidence-based assertions of effectiveness or opinion pieces will not be accepted.

NICE are interested in information promoting equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socio-economic status.

Getting Involved

Send your comments to [email protected] using the form below.

The deadline for responses is the end of play on Thursday the 26th of September.

Please note:

  • The society will only produce ONE response to any consultation.
  • Any response that goes under the society logo MUST be signed off by the relevant Board Chair and Branch Chair in the case of Devolved Nations.
  • Responses on behalf of particular Divisions / Faculties / Member Networks are not permitted under any circumstances.
  • Please do refer to the British Psychological Society Consultation Processes document which is attached before writing and sending any comments
  • Please ensure that all comments are based on Published Evidence and not solely on clinical opinion

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