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New advocacy resource for people with ME in hospital

New advocacy resource for people with ME in hospital

May 30, 2024

In response to increasing requests for advocacy support from people with ME/CFS in hospital, including those more severely affected, 25% M.E. Group, Action for M.E., Blue Ribbon for the Awareness of ME, and the ME Association have co-produced a new resource.

Supporting people with ME/CFS in hospital is designed to help patients, carers and family members advocate for their needs, choosing which sections of the resource they would like to share with the health professional treating them.

Noise, light, sleep disruption and adverse reactions to medication can all worsen the symptoms of ME/CFS, so a hospital environment can be very challenging. This can be compounded by a lack of understanding about the illness, and disbelief about its severity.

With frequent references to the 2021 NICE guideline for ME/CFS, our new resource aims to address this.

It explains why people with ME/CFS may need reasonable adjustments, and outlines key considerations when treating people with ME/CFS for outpatient care and inpatient visits, highlighting:

  • how continuity of care conserves energy
  • the need to reduce sensory stimuli
  • that people with ME/CFS will require extensive undisturbed rest
  • what to be aware of when moving/handling someone with ME/CFS
  • the impact of physical and cognitive exertion
  • that people with ME/CFS may be unusually sensitive to medication, and often have dietary intolerances.

The resource also offers space for people with ME/CFS to add further details about their individual needs, and templates for the door/above the bed to help convey essential information to hospital staff and visitors.

We are grateful to people with severe ME/CFS and their families; Pamela Shepherd, former surgical nurse practitioner; Dr Vikki McKeever, GP with a specialist interest in ME/CFS, Yorkshire; Samantha Browning, Clinical Lead, Action for M.E.; E. Tait, Registered Nurse, NHS Grampian and Prof Vinod Patel MD FRCP FHEA MRCGP DRCOG MB ChB BSc (Hons), for their insight and input when reviewing the resource in draft.