Herts Sussex ME CFS Service update

Herts and West Essex Integrated Care Board – ME/CFS service development

The MEA wrote to Herts and West Essex ICB on 21st November with a number of concerns relating to their plans to develop a specialist referral service for people with ME/CFS

A copy of our letter, along with their initial reply can be found here.

The ICB have now provided a more detailed reply – as below

Unfortunately, this reply raises more questions than answers as to what sort of referral service is going to be organised

ICB Reply

Dear Dr Shepherd,

Thank you for your email to the Hertfordshire and West Essex Integrated Care Board (ICB) on 21 November 2022 in relation to the ICB’s policy dated 1 July 2022 titled Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) Inpatient Treatment. Please accept our apologises for the delay in this response.

Your query was shared with the Associate Medical Director for Planned Care and Prioritisation to look into and their findings form the basis of my response.

This policy is not a planning document, clinical guidance or an outline of locally commissioned services for ME/CFS. It is one of the ICBs Evidence Based Interventions (EBI) policies, which outline specific interventions that are either not routinely funded, or are only funded when certain criteria are met. We think there may have been a misunderstanding as to the purpose of the policy. It should not be interpreted to have any relation to future plans for services for persons with ME/CFS.

Thank you for your feedback on the evidence based intervention policy Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) Inpatient Treatment and highlighting the current references to graded exercise therapy and CBT. These are within the document by legacy when the policy was recently aligned across the ICB. They served as background information and are superseded by the reference to NICE guidance. They are not relevant to the purpose of the policy which is outlining what is not routinely commissioned. We are therefore happy to propose to the next Clinical Policies Group (CPG) that these statements are removed and can confirm this is on the agenda for next week’s CPG to agree the proposed changes

We will also recommend to the CPG that the phrase “outpatient local specialist” is replaced with “outpatient secondary care specialist”, reflecting the fact that the NHS constitution allows patients to have a choice of secondary care provider when referred for a first outpatient appointment. This will clarify that referral to secondary care specialist teams with the training and experience in assessing, diagnosing, treating and managing ME/CFS is part of what is normally funded

The policy states that inpatient care is not routinely funded. The relevant NICE guidance does not make any recommendations for inpatient care. The policy also states that referral to units out of the local area are not routinely funded. This is on the basis that there are locally commissioned, multi-disciplinary, community services for CFS/ME. The policy does not limit referral for an outpatient local specialist opinion where required. As with all the EBI policies, in clinically exceptional circumstances, following involvement of appropriate locally commissioned services, treatment in units out of the local area, or for inpatient care, will be considered via the Individual Funding Request route.

We trust that this response has addressed your query, however if you have any further questions, please do not hesitate to contact the patient experience team via email: hweicbwe.patientfeedback@nhs.net

Kind regards

Shivon Genus
Interim Patient Experience Manager

Patient Experience Team
Hertfordshire and West Essex ICB
Patient Experience Team phone number: 01992 566122
ICB switchboard: 01707 685000


If you live in Herts or West Essex please let us have your feedback on what has happened if you have asked for, or been given a GP referral to a specialist referral service/team for ME/CFS

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.

Dr Charles Shepherd
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