Question

The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?

Answer

Unfortunately, you are not alone in that there are still many parts of the UK – especially Northern Ireland, Scotland and Wales – where specialist referral services for people with ME/CFS are non-existent. This is despite the fact that the recommendations in the new NICE guideline place a clear obligation on health service commissioners to provide a proper diagnostic and management service for all people with ME/CFS.

In relation to Northamptonshire, I wrote to the Chief Executive of the new Integrated Care Service in September 2022 and have yet to receive a proper response. So I think you should pursue this with your MP. The key points that you need to put to him/her in relation to what should now be happening to people with ME/ CFS in both primary (GP) care, and the handover to secondary care, are as follows:

1. The early recognition of people who have ME/CFS symptoms (which often follow an acute infection) in primary care. GPs should be providing appropriate management advice whilst a diagnosis is being suspected and investigated.
2. GPs should aim to confirm a diagnosis of ME/CFS in primary care no later than three months from the onset of symptoms in both adults and children.
3. At this point the GP should be able to refer the person to a specialist service where there is a multidisciplinary team that can confirm the diagnosis (as there is a high rate of misdiagnosis of ME/CFS in primary care), provide expert help on all aspects of management, and prepare an individual care and support plan.

The NICE guideline on ME/CFS provides the following specific guidance on the composition of the multidisciplinary specialist team:

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, dieticians, and clinical or counselling psychologists.

Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/ CFS specialist centres.

• • The specialist team should also provide management for people who are housebound with severe or very severe ME/CFS.
  • There should be a separate service for children and young people with ME/CFS.
  • Specialist services should provide information and guidance on relapses, education, employment, disability aids and appliances and nutrition.
  • Following referral to a specialist team, future management and follow-up must continue in secondary care, primary care, or in a mixture of both.
  • All health professionals who are involved in the management of people with ME/CFS should be properly trained in ME/ CFS and be aware of the recommendations in the new NICE guideline.

We would add that the next meeting of the All Party Parliamentary Group (APPG) on ME will be looking at the implementation of the new NICE Clinical Guideline on ME/CFS one year on – so please ask your MP to attend.

More information:

• NICE Guideline on ME/CFS: An ME Association Summary
  This Free booklet is recommended reading. It lets you know what to expect from the NHS and social care services with regard to symptom recognition, diagnosis, management, referral, and ongoing care and support.
• Care and Support Plans
  This Free booklet examines the potential difficulties establishing ongoing care and support from the NHS and include the 2021 NICE Guideline recommendations for care and support plans and regular reviews in primary care.