Recovery after Inpatient ME/CFS+MUS rehabilitation-what can CYP Expect

• Research type

  Research Study

• Full title

  A study of medium-term outcomes in young people with moderate to severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Medically Unexplained Symptoms, 2-5 years after discharge from inpatient rehabilitation under a specialised multidisciplinary team.

• IRAS ID

  294921

• Contact name

  Terry Segal

• Contact email

  Terry.segal@nhs.net

• Sponsor organisation

  University College London/University College London Hospital Joint Research Office

• Clinicaltrials.gov Identifier

  NA, NA

• Duration of Study in the UK

  0 years, 4 months, 31 days

• Research summary

  There is little in the published medical literature, reporting medium term outcomes after rehabilitation from a specialised team in young people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Medically Unexplained Symptoms (ME/CFS and MUS).

  This study aims to evaluate the medium term outcomes of patients with ME/CFS and MUS, admitted for inpatient rehabilitation under the Treatment and Rehabilitation of Complex Conditions Service (TRACCS team) at University College London Hospital (UCLH).

  This study will examine what the lives of the young people discharged from inpatient management with the TRACCS team look like 2-5 years after discharge by examining the following outcomes:

  • Symptoms
  • Severity of symptoms (if any)
  • Current self-reported quality of life measures
  • Independent Living
  • Education attainment
  • Employment status
  • Social engagement
  • Hobbies
  • Mobility

  The aim is to gain insight into the likelihood of recovery, in patients with moderate-severe ME/CFS and MUS who undertake such specialised inpatient rehabilitation.

  This study will involve postal questionnaires to 130 young people who had moderate-severe ME/CFS and MUS, admitted for rehabilitation under the TRACCS team at UCLH and discharged from inpatient management during the time period January 2016 to December 2018.

  Potential participants will be sent a study ‘pack’ by post. This pack will contain a letter of invitation from the responsible Paediatric Consultants when they were under the care of the TRACCS team.
  It will also contain:
  • Patient information leaflet
  • Consent form
  • Study Questionnaire
  • Stamped addressed envelope
  Participants will be encouraged to return the completed questionnaire and consent form by post or complete online versions of both.
  Details of symptoms and care received, when under the care of the TRACCs team will be obtained from interrogation of medical notes after consent is obtained.

  Findings from research will be submitted for presentation at the British Association for CFS/ME -BACME and Young People’s Health Special Interest Group- YPSIG conferences.
  

• REC name

  London - Bloomsbury Research Ethics Committee

• REC reference

  21/LO/0800

• Date of REC Opinion

  9 Nov 2021

• REC opinion

  Unfavourable Opinion