The team have contacted the MPs and Councillors within Buckinghamshire, Oxfordshire and West Berkshire (BOB ICB) to inform them of the pilot initiative and to request support in signposting members of their community with experience of ME/CFS or LC. We put forward that feedback on the use of local services and any concerns about such services would be gratefully received in order to help shape health and social care services that truly address the needs of the patient population. We also welcomed insight from local MPs and Councillors into local provision for ME/CFS/LC and recommendations for future services in BOB ICB.
An invitation was sent to MPs to attend the inaugural meeting of the All-Party Parliamentary Group (APPG) on ME, chaired by Jo Platt, on 17th December 2024 with the message that the landscape for ME/CFS/LC services is changing dramatically at present and we are at a pivotal point to help shape services and support those in need.