The NICE clinical guideline is the main influence on how people with ME/CFS are diagnosed and managed in NHS primary care. It particularly applies to England and Wales but is also influential in Northern Ireland and Scotland.

The ME Association considers the current guideline to be unfit for purpose and welcomed the decision to fully review and update it. We remain fully committed to the review process.

The guideline review process is necessarily a long one and the new guideline is not expected to be published until October 2020.

As stakeholders, the ME Association is able to submit formal comment at several stages and attend workshops.

NICE draft scope consultation

The most recent workshop occurred last month and discussed the initial draft scoping report. This document sets out the parameters by which the main guideline will be written. It provides a template, explaining who the guideline is for and the subjects that it will deal with.

Following the workshop, and the feedback received at that time, NICE revised the document and have now issued the final draft scoping report.

The scoping report is not a detailed document, but it should reference any relevant subject areas and provide an overview and template for the full guideline.

We don’t want the scoping report to miss any important areas because that could mean the full guideline misses them also.

We have until 5.00pm on Thursday, 26th July, to make a formal response; although NICE is also accepting comments from individuals.

If you would like to submit comments to the ME Association, we will try to ensure they form part of our formal stakeholder submission. But please keep your comments brief and to the point.

Contact the ME Association using this email form and use the title: ‘NICE Scope Feedback’

We cannot, at this stage, accept comment on desired main guideline content. This exercise is solely about the scoping report and not the detail that will comprise the full guideline.

Here are the details you will need:

We will aim to submit our stakeholder response in the next four weeks, but if you have anything you would like to tell us – that you feel is wrong or is missing from the scoping report – then send us your comment sooner rather than later, or complete the NICE comment form as an individual.

Guideline committee recruitment

NICE are advertising for members to form the important clinical guideline committee. The committee is comprised of health professionals with experience of or an interest in ME/CFS and will also include up to four lay members i.e. non-professionals with personal experience of the condition.

Lay members

NICE is seeking people who are willing to champion patient and carer perspectives. A lay member can be a patient, unpaid carer, someone from a stakeholder group, or member of a charity etc. who has gained experience of ME/CFS and of healthcare and other relevant issues.

“We are looking for people who have an understanding of ME/CFS and the issues important to people with ME/CFS. This understanding could have been gained:

through personal experience of treatment and care provided for you by the NHS or social care services

as a parent or carer of someone with ME/CFS

as a volunteer or employee of a relevant voluntary organisation or support group.

“Applications are especially welcome from people with ME/CFS (age 16+) from across the range of illness severities, and from parents/carers of people with ME/CFS.

“Any questions? Contact the Public Involvement Programme at PIP@nice.org.uk

“Lay members have the same status and carry out the same functions as other members of the Committee for the duration of their involvement. As a lay member, we are looking for people who can help to ensure that the views, experiences and interests of people affected by the guidance inform the Committee’s work.”

“This may include:

identifying issues of concern to people using NHS, public health or social care services

making sure that patient or carer views are taken into account

raising awareness of any studies known to you (for instance, surveys of patients/carers’ views and experiences) which highlight issues that may inform the work of the Committee

reviewing evidence and draft recommendations from a patient or carer perspective (for instance, did the research address issues or outcomes that people affected by the guidance consider important? Do the recommendations take their views into account?)

highlighting areas where the preferences and choices of those affected by the guidance may need to be acknowledged

helping to ensure appropriate consideration of equality issues

advising on implementation issues as needed

If you are interested in applying for lay membership of the guideline committee, be sure to consider if you can reasonably commit to the 2-year period, expected travel (although some dispensations will be made), the need for ‘homework’ and to actively participate at meetings.

Full details of the role and your responsibilities can be found on the NICE website. Deadline for lay member applications is 5.00pm Thursday, 26 July 2018.