NICE Guideline Review: Call for Evidence | 02 September 2019

September 2, 2019

Friday, 30 August 2019, National Institute for Health and Care Excellence.

Dear registered stakeholder, 

RE: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome

We need more information to help us develop this NICE guideline.

We invite registered stakeholders, and other individuals and organisations with an interest to send any relevant published or unpublished information.

Details of the information we need and how to submit this are on the guideline web page

Please send the information by 5pm on Friday 4th October 2019.  

We look forward to receiving this information and thank you in advance for your help.

What we need

We need evidence from the areas listed below for the guideline we 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

We are looking for 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.

We would like 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

We cannot accept non comparative studies, promotional material, non-evidence-based assertions of effectiveness or opinion pieces.

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

We are looking for evidence that explores and evaluates people’s experience of interventions for ME/CFS. Qualitative studies evaluating focus groups and interviews and surveys will be considered for inclusion in the guideline.

We cannot accept case series, case studies, individual accounts of experience, promotional material, non-evidence-based assertions of effectiveness or opinion pieces.

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

Sending information

For published information, send only the details (to include author/s, title, date, journal or publication details, including volume and issue number, and page numbers). Do not send a pdf/Word document or paper copy.

For unpublished information, send:

Highlight any confidential sections (unpublished research or commercially sensitive information) in unpublished information. For more details about this, see our guidelines manual.

Complete the call for evidence response form and the checklist for confidential information formincluding the declaration of any links with, or funding from, the tobacco industry. 

Please email these forms with any relevant information by 5:00 p.m. on Friday 4th October 2019 to:

Alternatively, please send hard copies to:

Kate Ashmore
Project Manager
National Guideline Centre
Care Quality Improvement Department
Royal College of Physicians
11 St Andrews Place
Regent’s Park, London

We look forward to receiving this information and thank you in advance for your help.

  • You can read the information above on the NICE website.
  • The ME Association as registered stakeholders in the guideline review process will be making a submission as part of this call for evidence.
  • If you have any suggestions for material that should form part of our submission then please let us know in the comments section below, or on our Facebook page.
  • Alternatively, you can email suggestions to: Please title your email, “NICE Call For Evidence” and note there is a very tight deadline.

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.

ME Association Registered Charity Number 801279

Shopping Basket