NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018

May 30, 2018


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Update: 11 June 2018

Please note an extension to the deadline for the consultation period of the scoping report and recruitment of lay members to the guideline committee has been granted. The period is now: 21st June to 26th July 2018.

NICE Guideline on ME/CFS: Diagnosis and Management

This is a summary of the stakeholder’s workshop that was held on Friday 25th May 2018 to discuss the current version of the new NICE guideline scoping report.


The preparation of the NICE guideline scope and the stakeholder’s workshop is an important event in the development of the new NICE guideline on ME/CFS.

NICE arranged this workshop to enable stakeholders in the new guideline to learn about the status of the guideline development and to discuss the content of the current draft of the scope.

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The scope is basically a summary that has been prepared by NICE which covers the topics that will be included in the new clinical guideline.

The workshop was attended by around 60 stakeholders – comprising a mixture of charity representatives, local support group representatives, patients, parents and carers of people with ME/CFS, local NHS service providers, and health professionals with an interest in ME/CFS.

Among the ME/CFS experts present were Dr Eliana Lacerda and Dr Luis Nacul (from the ME/CFS Biobank), Professor Jonathan Edwards, Dr Nigel Speight, Dr William Weir and Dr Paul Worthley.

We were split into groups of about 12 people with the first part of the meeting devoted to short presentations from members of the NICE guideline team. The main part, lasting around 2 hours, was devoted to discussions on each table about the content of the draft scoping report.

I will concentrate on information that had not already been conveyed at the inaugural stakeholder meeting in January 2018.

Welcome and introduction to NICE – Philip Anderson (PA), Clinical Adviser at NICE

PA welcomed everyone and set out the agenda for the afternoon.

Aims of the workshop – Rupert Franklin (RF), Senior Guideline Commissioning Officer at NICE

RF outlined the purpose of the guideline scope:

  • Explains why the guideline is needed
  • Identifies which topic areas will be included or excluded
  • Ensures the guideline addresses key areas of variation in delivery of care and quality

The main purpose of the workshop was to:

  • Obtain stakeholder views on the draft scope in relation to prioritisation of correct areas for inclusion and whether there are any omissions
  • Identify membership for the guideline committee
  • Encourage applications for the guideline committee

Joining the guideline development group

NICE Get Involved Our Committees

Regarding applications to join the committee that will prepare the content for the new guideline: this will involve both health professionals and lay representatives and recruitment will start in June.

Applications can be made by visiting the ‘get involved’ section on the NICE homepage. Anyone with an interest in ME/CFS can apply to join the guideline committee and the aim is to have 4 lay member representatives.

NICE want all stakeholders to help spread the word to people who would make a good contribution to preparing a new and patient friendly NICE guideline on ME/CFS.

Vacancies for lay and professional membership of the ME/CFS guideline committee should appear on the NICE website by 21st June and the deadline for applications will be 19th July (see schedule below).

Public Involvement Programme (PIP) Victoria Thomas (VT), PIP at NICE

VT explained how the PIP supports the individual service users and carers and their organisations/charities in the work of NICE by:

  • Encouraging relevant organisations to become stakeholders
  • Facilitating recruitment of patients, carers and advocates to NICE guideline development committees as lay members
  • Providing on-going support and training

Role of the NICE Guideline Committee – Norma O’Flynn (NF), Chief Operating Officer for the ME/CFS guideline

NF explained several important practical points relating to timeline and membership of the new guideline committee.

Important diary dates are:

  • Scope consultation: 21st June to 5pm on 26th July
  • Application for committee members: 21st June to 5pm on 26th July
  • First guideline committee meetings: from the end of November 2018
  • Guideline development process: about 70 weeks
  • Guideline consultation: April 2020

Regarding recruitment to the committee: NF explained that two key appointments have now been made – Dr Peter Barry as Chair and Baroness Ilora Finlay as Vice Chair.

Both were present at the meeting and introduced themselves to each of the stakeholder tables during the discussion session.

  • Chair Dr Peter Barry: Paediatric Intensivist, researcher and honorary senior lecturer in child health at University of Leicester (biography is from 2000).
  • Vice Chair Baroness Ilona Finlay: Consultant Palliative Medicine, President Chartered Society of Physiotherapy, Chair Palliative Care Strategy Implementation Board for Wales, Chair Welsh Medical and Dental Academic Advisory Board.

Composition of the new committee

This is possibly subject to change following the consultation process. Worth noting that there is, at present, no psychiatrist on this list, however a liaison psychiatrist at the meeting did make a case for including one:

  • GPs X2
  • Physicians with an interest in ME/CFS (e.g. neurologist, infectious diseases, immunologist) X3
  • Psychologist
  • Occupational therapist
  • Physiotherapist
  • Dietitian
  • Paediatricians X2
  • Nurse with special interest in ME/CFS
  • Social worker
  • 4 lay members to include a patient and/or carer

In relation to lay members, the following options are being considered:

  • Consideration will be given to forming a sub-committee of people with more severe ME/CFS who could take part in virtual meetings. These would be short meetings with flexibility regarding timing and organisation
  • Separate formal focus groups for those with more severe illness and children/young people with ME/CFS
  • Use of the Delphi process to engage with wider patient groups

Presentation of Scope and Key Discussion Areas – Peter Barry (PB), Committee Chair

Dr Peter Barry, Chair NICE ME/CFS Guideline Committee.

Dr Peter Barry, the new Chair of the guideline committee introduced himself and outlined some of the key inclusions in the new guideline:

  • Adults with suspected or diagnosed ME/CFS
  • Children and young people
  • People with severe symptomatology
  • Monitoring and review
  • Information, education and support for people with suspected or diagnosed ME/CFS, their families and carers

The guideline will also cover:

  • Ways in which outcomes are measured (e.g. use of quality of life, pain and fatigue scales)
  • Health economics – NICE guidance only recommends interventions or practices that are considered cost effective

Key areas that would not be covered:

  • Management of other conditions occurring alongside ME/CFS
  • Management of symptoms (e.g. headaches) where NICE guidance already exists

Group Discussion – Facilitated discussion in small groups

Baroness Ilora Finlay, Vice Chair, NICE ME/CFS Guideline Committee.

The final and main part of the workshop, lasting approximately two hours, consisted of each table going through the draft scope subject by subject and discussing how they wanted to see the new guideline deal with these key aspects of diagnosis and management.

In addition to several people with M.E., a parent of a child with M.E., and the NICE guideline facilitator, there were three other health professionals – Professor Jonathan Edwards, and two doctors (from psychiatry and infectious diseases) from ME/CFS hospital-based services in our group.

Concerns, observations and suggestions made by our group included:

Who is the guideline for?

  • NICE should include occupational health service providers as a group for which the guideline is for rather than may also be relevant for – as stated in the current scope.

Collection of evidence

  • There is a strong need to collect and consider evidence on treatments that appear to work, and ones that do not work, from both patients and clinicians. This is in addition to published evidence from clinical trials. Patient and clinician evidence was included and given equal weight in the CMO Working Group Report on ME/CFS – partly in view of published evidence from clinical trials being either unavailable or of poor quality in many instances. From previous meetings with NICE, and the feedback at the meeting, it appears that NICE are accepting the need to include clinician and patient evidence.

Nomenclature and definition of ME, CFS and ME/CFS

  • The problems and uncertainty created by having over 20 different clinical and research-based definitions for ME, CFS and ME/CFS.
  • The unsuitability of the name chronic fatigue syndrome (CFS)

Clinical assessment and diagnosis

  • The need for clinicians to have accurate basic information on relevant points in history taking, examination and relevant investigations in relation to the clinical assessment stage of people with a possible diagnosis of ME/CFS to make an early and accurate diagnosis, especially in primary care (general practice). It was felt that GPs should have the necessary skills to be able to make an early and accurate diagnosis in most cases where the onset is uncomplicated. But this will require medical education.
  • Consideration needs to be given as to how people with a diagnosis of a post-viral fatigue syndrome (which may be the most appropriate term to use in the early stages of a post infectious ME/CFS-like illness) are to be covered in this guideline.


  • The guideline needs to include information on the presence of other conditions that may co-exist with ME/CFS – fibromyalgia, irritable bowel symptomatology, migraine type headaches, osteoporosis in severe ME/CFS etc. – and how they should be managed in relation to ME/CFS.


  • Flaws in the way that clinical trials (especially the PACE trial) have been conducted in relation to CBT and GET. Noting that patient evidence has consistently indicated that CBT is not an effective form of treatment for ME/CFS (although it can sometimes help some people to cope) and that GET makes many people worse. The current recommendations re: CBT and GET cannot therefore remain. Despite requests by the ME Association to NICE for GET to be removed from the current guideline; there is no indication at present that this will happen – so the current recommendation that GET should be offered to everyone with mild or moderate ME/CFS will remain in force until publication of a new guideline in October 2020. I discussed this with a senior member of the NICE team after the meeting and again asked for some form of health warning to be issued by NICE in relation to GET – if they are not prepared to remove GET from current guidance.
  • Although research into the cause of a condition falls outside the remit of a NICE guideline, the committee do need to take note of the research involving exercise physiology – from researchers such as Mark VanNess et al (i.e. people with ME/CFS have a serious problem with aerobic energy metabolism and an early transition to anaerobic metabolism – they are not deconditioned) – and muscle dysfunction when they come to consider the recommendations on activity management.
  • There must be more information on the management of specific symptoms – orthostatic intolerance and PoTS, pain, sleep disturbance etc. – even where a NICE guideline on a specific symptom currently exists. Simply referring to the fact that there is a NICE guideline on neuropathic pain will not cover the overall and complex problem of pain management in ME/CFS.
  • The guideline must recognise the heterogeneity of the population covered by ME/CFS in relation to both clinical presentations and disease pathways. So, management must be personalised and not based on the current ‘one size fits all’ approach.
  • Problems relating to the intention to review evidence for use of the Lightning Process in ME/CFS – e.g. criticisms of the SMILE trial and Advertising Standards Authority adjudications in relation to some Lightning Process adverts.
  • The need to include objective measures of outcome – e.g. use of actometers to measure activity levels, DWP benefit status, school attendance, return to employment – when assessing the results from clinical trials. Total reliance on subjective outcome measures is not satisfactory.
  • Acknowledgement that some of the drug treatments that are often prescribed for key symptoms such as pain and sleep disturbance are not licensed for this purpose. The wording in the current scope regarding the use of unlicensed drugs is therefore too restrictive.
  • A less dogmatic and prohibitory approach to the use of treatments such as antiviral drugs – where there is some published evidence of benefit in carefully selected sub-groups of people with ME/CFS (e.g. clinical trials from Montoya et al. involving valganciclovir).


The group identified and queried several other important aspects of management, most of which are in the current guideline, but do not appear in the current scope. These include:

  • Disability aids and adaptions, including Blue Badge applications
  • Education
  • Employment
  • Pregnancy
  • Vaccinations

Round-up and closing remarks – Philip Anderson

The meeting finished with the facilitator from each table providing a summary of the main points to emerge from discussion at that table.

The key conclusion from our table was that future treatment recommendations must be personalised and tailored to individual circumstances and that there is no place for the current ‘one size fits all’ approach to management involving only CBT and GET.

Overall, I felt this was a very constructive and encouraging meeting with a real effort being made by senior people at NICE to listen to and act on the views of people with ME/CFS.

It was also encouraging to see a good selection of physicians who have the support of the patient community playing an active part in the guideline development process. Hopefully, this will continue through the development of this new guideline.

Further consultation on the scope

There will be a further period of consultation to cover an updated version of the scope starting in June (when NICE will have taken note of the discussions at the stakeholders meeting) and the ME Association will be sending in a more detailed written submission.

To do so we will be taking including comments from our members. We will shortly be announcing how this membership consultation will take place.


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