SPECIALIST REFERRAL

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS

They should:

  • carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan
  • provide care for people with ME/CFS using a coordinated multidisciplinary approach
  • recognise that the person with ME/CFS is in charge of the aims of their care and support plan.

See also the website pages about Management and Severe and Very Severe ME/CFS which carry additional recommendations from the NICE clinical guideline

Find a local ME/CFS Specialist Service in your area

ME/CFS 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, dietitians, 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.

Referral to an ME/CFS specialist team

  • Carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan. 
  • Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers informed by their holistic assessment.
  • Provide care for people with ME/CFS using a coordinated multidisciplinary approach.

Assessment, care, and support planning by an ME/CFS specialist team

Carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan. This should include:

  • a medical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)
  • physical functioning
  • the impact of symptoms on psychological, emotional, and social wellbeing
  • current and past experiences of medicines (including tolerance and sensitivities), vitamins and mineral supplements
  • dietary assessment (including weight history before and after their diagnosis of ME/CFS, use of restrictive and alternative diets, and access to shopping and cooking).

Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers informed by their holistic assessment. This should include the following, depending on the person's needs:

  • information and support needs,
  • support for activities of daily living, 
  • mobility and daily living aids and adaptations to increase or maintain independence,
  • education, training, or employment support needs, 
  • self-management strategies, including energy management
  • physical functioning and mobility, 
  • managing ME/CFS and symptom management, including medicines, 
  • guidance on managing flare-ups and relapses, 
  • details of the health and social care professionals involved in the person's care, and who to contact.

Recognise that the person with ME/CFS is in charge of the aims of their care and support plan.

Give the person and their family or carers (as appropriate) a copy of their care and support plan and share a copy with their GP.

Multidisciplinary care

Provide care for people with ME/CFS using a coordinated multidisciplinary approach. Based on the person's needs, include access to health and social care professionals with expertise in the following as a minimum, with additional expertise depending on symptoms:

  • medical assessment and diagnosis,
  • developing personalised care and support plans,
  • self-management strategies, including energy management,
  • symptom management, including prescribing and medicines management,
  • managing flare-ups and relapses,
  • activities of daily living, including dental health,
  • psychological, emotional, and social wellbeing, including family and sexual relationships,
  • diet and nutrition,
  • mobility, avoiding falls and problems from loss of dexterity, including access to aids and rehabilitation services,
  • social care and support,
  • support to engage in work, education, social activities, and hobbies.

Care for people whose ME/CFS is managed in primary care should be supported by advice and direct clinical consultation from an ME/CFS specialist team.

Give adults, children, and young people with ME/CFS and their family or carers (as appropriate) a named contact in their primary care and/or ME/CFS specialist team to coordinate their care and support plan, help them access services and support them during periods of relapse.

Provide children and young people with ME/CFS and their family or carers (as appropriate) with details of a named professional in the ME/CFS specialist team who they can contact with any concerns about the child or young person's health, education, or social life.

Primary care reviews

  • Offer adults with ME/CFS a review of their care and support plan in primary care at least once a year.
  • Offer children and young people with ME/CFS a review of their care and support plan at least every 6 months.
  • Arrange more frequent primary care reviews for children, young people, and adults with ME/CFS as needed, depending on the severity and complexity of their symptoms, and the effectiveness of any symptom management.

When carrying out a review in primary care, ensure you have access to the person's care and support plan and any clinical communications from the ME/ CFS specialist team (including their discharge letter, if relevant).

As part of the review, discuss with the person with ME/CFS (and their family or carers, as appropriate) and record as a minimum:

  • their condition, including any changes in their illness and the impact of their symptoms, including whether they have experienced new symptoms,
  • self-management − ask about their energy management plan and (if relevant) their physical activity or exercise programme,
  • who is helping them and how they provide support,
  • psychological, emotional, and social wellbeing,
  • any future plans − ask if the person is considering any changes or if they have any challenges ahead.

Refer the person with ME/CFS to their named contact in the ME/CFS specialist team if there are any new or deteriorating aspects of their condition.

Consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether a referral is needed.

Evaluate and investigate whether new symptoms, or a change in symptoms, are due to the person's ME/CFS or whether they are due to another condition.

More information

To find an ME/CFS specialist service near to where you live, visit the ME Association website, and enter your postcode or location.

Please note: ME/CFS specialist services are not available in all areas – especially to those who live outside of England – although we hope this will improve as the new guideline is implemented.

  • Your GP should know more about suitable referrals in your area or be able to provide ongoing care and support themselves.
  • You can be referred to a specialist service outside of your area, providing of course that you are ambulatory.
  • Some services are providing home visits for people severely and very-severely affected, and remote access to some elements of the service, but this is not a widespread practice at present.
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