Dr Shepherd has received a reply from Herts and Sussex Integrated Care Board regarding the implementation of the new NICE guideline and the care of people with severe and very severe ME/CFS. This followed alerting them to some information on their website that seemed to contradict the recommendations from the NICE guideline.
Letter to Herts and West Sussex
Dear Mr Burstow and Dr Joyce
Herts and West Essex Integrated Care Board – Primary Care Board: Diagnosis and Management of people with ME/CFS
I was very disappointed to read some the information in the attached document relating to the diagnosis and management of people with ME/CFS and how this is being used to plan the future care and management of people with severe or very severe ME/CFS in Herts and West Essex.
I have also been contacted by local patient representatives who are upset at the way in which ME/CFS is described and the fact that recommendations in the new NICE guideline are not being properly interpreted in relation to future service planning.
I have commented below on some of the of the statements that are not consistent with information and recommendations in the new NICE guideline on ME/CFS.
I understand that there is a meeting of the ICB PCB on Thursday 24th November to discuss service provision for people with ME/CFS.
Please could you therefore draw these concerns to the attention of people who will be attending this meeting and are involved in the decision making process.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the NICE guideline committee on ME/CFS 2019 – 2021
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Dr Peter Barry – Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay – Co-Chair, NICE guideline committee on ME/CFS
Dear Dr Shepherd
On behalf of Jane Halpin, Chief Executive of NHS Hertfordshire and West Essex ICB we would like to thank you for your email dated 21st November 2022.
Thank you for bringing your concerns around the diagnosis and management of people with ME/CFS and how this is being used to plan the future care and management of people with severe to very severe ME/CFS to the attention of Hertfordshire and West Essex ICB.
We will now look into this matter and aim to provide you with a response by 5th December 2022 (10 working days) however, if there is likely to be any delay, we will ensure to keep you updated.
However, if you need to contact us in the meantime the reference number is ICB 4689.
Patient Experience and Performance Co-ordinator
Patient Experience Team
Hertfordshire and West Essex ICB
Original information on the Herts and West Sussex Website
NHS Herts and West Essex Integrated Care Board (ICB)
Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME) Inpatient treatment
July 2022 V1.0
Medical Directorate Prepared by: Associate Medical Director for Planned Care and Prioritisation First Published: 1st July 2022 Document number:
Approval date: 1st July 2022 Version number: 1.0 Status: Approved Next review date: 1st July 2024
Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME) Inpatient treatment
Not normally funded Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in units out of the local area or for inpatient care is will only be provided in exceptional circumstances following involvement of appropriate local services.
Patients should be diagnosed and managed in a community setting.
Referral for an outpatient local specialist opinion may be required if there is doubt about the diagnosis, or the patient is not improving despite management in primary care.
Rationale There is limited high quality evidence relating to the effectiveness of this intervention in CFS.
There is evidence of effectiveness from randomised controlled trials of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Guidance on the management of patients is provided in the latest clinical guideline from NICE. Clinicians should be aware of the NICE clinical guideline on the effective management of patients with CFS. Referrals to in-patient services for CFS will only be considered in exceptional circumstances as effective management is available locally.
Treatments of unproven effectiveness will not normally be provided under the NHS.
Notes from Dr Charles Shepherd on the above
The above information, which has been prepared for the ICB is very limited and implies that the recommendation in the new NICE guideline on ME/CFS regarding the establishment of a specialist multidisciplinary referral service, as very clearly set out in Box 3 of the new NICE guideline –
Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.
– is not currently available for people covered by the ICB.
And there do not appear to be any plans to provide a proper ME/CFS referral service in future.
The new NICE guideline on ME/CFS recommends that GPs should be able to refer people with ME/CFS (adults and children) to a specialist team/service at three months following the onset of symptoms for confirmation of the diagnosis (as there is a significant rate of misdiagnosis in primary care) and the preparation of a care and management plan.
This recommendation is set out very clearly in sections 1.4.1 – 1.4.4 of the guideline.
1 Graded exercise therapy (GET) is not recommended by NICE as a treatment for ME/CFS – see Box 4 in section 1.11 of the new guideline
This is because the NICE guideline committee concluded that the evidence for efficacy for GET in clinical trials was either low or very low.
There is also substantial and consistent patient evidence of people being harmed by GET.
The new NICE guideline provides detailed and very helpful guidance on activity and energy management in sections 1.11.2 – 1.11.14 – this is what should be referred to and referenced.
I assume that the inaccurate ICB statement about the effectiveness of GET relates to the reference to the evidence based review of clinical trials that was carried out for the Chief Medical Officer’s Working Group Report on ME/CFS twenty+ years ago (referenced as Bagnall et al and the actual report) rather than the evidence-based review of non-pharmacological interventions for ME/CFS that was carried out for the new NICE guideline:
Supporting evidence for new NICE guideline: https://www.nice.org.uk/guidance/ng206/evidence
2 CBT can sometimes help some people to cope with symptoms and the psychological effects of living with a long-term condition like ME/CFS.
CBT it is not however a treatment for the underlying disease process.
The NICE guideline review of evidence from clinical trials of CBT concluded that this was low or very low,
3 In relation to severe and very severe ME/CFS, I am very concerned about the lack of information regarding plans for the care and management of people in this group. They are nearly always housebound and are therefore unable to attend community health or hospital out-patient departments.
The information in this document implies that there are no facilities for the assessment and management of people who are severely affected in the area covered by your ICB, none are being planned, and no thought is being given as to where people who may require in-patient assessment or management can be referred.
The NICE guideline committee spent a great deal of time considering the way in which this group of people with ME/CFS are currently ignored and neglected by most of the existing ME/CFS referral services. The guideline sets out what needs to be done to improve the current quite appalling standard of care.
The management of severe and very severe ME/CFS is covered in detail in section 1.17
Evidence collected by NICE on severe and very severe ME/CFs can be found here
The ICB should have taken note of the recommendations in the new NICE guideline on all aspects of diagnosis and management of ME/CFS, especially that concerning severe and very severe ME/CFS.
The planning document suggests that this has not taken place.