Meeting with NHS Commissioners 15 December 2016

A meeting has been arranged for 15 December.  

A report has been written reviewing the options for developing the ME & CFS service within the finances available.  The recommendations of this report is to be discussed between the Patient / Carer Group and Commissioners.


The meeting was held between Suffolk & Gt Yarmouth & Waveney Commissioning and representatives from the Patient / Carer Group.

A final report has now been released following the feasibility study funded by 6 of the 7 CCG's who commission the service.  The feasibility study concluded that cost neutral service change could be delivered to address the significant and longstanding inequalities of care, especially relating to the severely affected.  

If implemented the service change would form the foundation for developing a biomedical service which is more in line with that delivered to people with other neurological conditions such as MS, and also with links to ME research projects.

The feasibility study is now being reviewed by the 7 CCG's and the Provider and a decision will be made in early January 2017.

The Patient / Carer Group fully endorse the recommendations of the final report. 

Further update 28 January 2017

Negotiations are ongoing between the seven CCG's and the Provider.  We will update you as soon as we know more.