We have held our fifth working group, which focused on key priorities for local ME/CFS service development. Members, including people with lived experience and carers, raised concerns around psychogenic framing, the need for ME-informed specialist nurses, barriers to Continuing Healthcare (CHC) funding, and significant gaps in professional education. There was strong support for improving biomedical understanding across services and ensuring care is accessible for housebound and severely affected patients. Many of these concerns align with priorities outlined in the recently published ME/CFS Delivery Plan.
We're pleased to share that the ME Association has been invited to present feedback from both the working group and the ME/CFS survey to BOB ICB. This marks the conclusion of a key aim of our Health and Social Care pilot project, and we are hopeful this feedback will help shape the ongoing service review.
We'd like to sincerely thank everyone who has taken the time and energy to contribute to the working group and the survey – your input is vital to ensuring services reflect real experiences and needs.