This is a Lothian-wide service for patients who have been given, and accepted, a diagnosisof ME/CFS or Post-Viral Fatigue Syndrome. The service is staffed by specialist physiotherapy and applied psychology staff, and is based at the Department of Clinical Psychology, Astley Ainslie Hospital.
The service is rehabilitative, providing time-limited, guided self-management interventions. It offers holistic, multi-disciplinary assessment and clinical work in accordance with a bio/psycho/social model. Individuals may be offered individual treatment or invited to a group programme. The ME-CFS rehabilitation service does not offer long-term counselling/support. Further details of the programme are outlined in the Rehabilitation Service PIL.
Patients should meet the criteria for the diagnosis of ME/CFS, with the primary symptom being persistent/excessive tiredness or fatigue. A comprehensive history, a physical examination and the investigations needed to both exclude alternative diagnoses and to elicit characteristic features of ME-CFS, in line with the ME-CFS Primary Care Management guidance on RefHelp, are a prerequisite for referral. This is a rehabilitation service, with no medical staff, and does not conduct any further medical investigations. It is beneficial if ongoing investigations with other services are completed prior to referral. If the patient has complex mental health difficulties, then these should be addressed prior to considering referral to this programme. Referrals will be triaged by staff and those that do not explicitly meet the criteria will be returned.
Referrers should be aware that not all patients referred will be deemed suitable. It may be possible, in some such instances, to offer some consultative case management discussion. The service cannot offer domiciliary visits and patients need to be able to attend for outpatient appointments or manage telephone / video consultations of 45 minutes. If patients’ fatigue severity inhibits engagement with the ME-CFS rehabilitation service, we would suggest an initial referral to domiciliary Physiotherapy or Occupational Therapy if appropriate.
Patients may also benefit from resources available from the charity Action for M.E
To discuss referrals further or require any additional advice, please email the ME-CFS service on ME.CFSrehabreferral@nhs.scot
Who to refer:
Patients who wish a rehabilitative approach to ME-CFS associated fatigue who:
- Have a clear diagnosis of ME-CFS, confirmed by undertaking a full history, examination and baseline investigations in line with the ME-CFS Primary Care Management page guidance
- Who have accepted the diagnosis of ME-CFS and wish a rehabilitative approach to their fatigue.
Who not to refer:
- Patients where the diagnosis of ME-CFS is unclear or where the main symptom to be addressed with a rehabilitative approach is not fatigue.
- Patients should not be referred to this service for confirmation of the ME-CFS diagnosis: the service does not undertake further investigations or referrals.
- Patients already undertaking another rehabilitation programme.
How to refer:
Please complete a referral form and email to: ME.CFSrehabreferral@nhs.scot.
Please give patients the ME-CFS rehabilitation service PIL.
