Edwina Hart, Minister for Health and Social Services in Wales, has set up a "Task and Finish Group" to work on a new framework for NHS services for people with ME/CFS in Wales – to be run on NICE Guideline principles. Wales is notoriously short of effective specialist services for people with ME/CFS.
In a letter received by an MEA member in Cardiff today, she writes that the group will consider and recommend "a clinically and cost effective care patheway for implementation locally across Wales".
"The Group will also be advising on how existing services could develop and improve. To inform the work of the group, Local Health Boards have been tasked with carrying out a baseline assessment within both acute and community settings"
"I am expecting the group to report to me by the end of March next year".
The Minister wrote that she was aware of "the contentious views" held by patients and clinicians on the best ways to diagnose and treat ME/CFS.
There is a note dated 6 August 2009 about the ‘Task and Finish Group" on the Welsh Government website:
"Date of decision / Dyddiad y penderfyniad:
"6 August 2009
"Statement of information / Datganiad gwybodaeth:
"The management of chronic diseases is a high priority for the NHS in Wales, which is required to put appropriate measures in place to ensure that prompt diagnosis and initiation of appropriate treatment, care and support is provided in the right setting and by the right professionals.
"To support the NHS, the National Institute for Clinical Excellence (NICE) published Guidelines for the Management and Diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) on 22 August 2007. This document sets guidelines on the general principles of care and diagnosis and initial management of children, young people and adults."
Wales is known to be exceptionally short of qualified CBT and GET practitioners, and in some areas there are none. So, even if the NICE Guidline on ME/CFS is adopted fully by the Health Minister, it is not clear how a Wales-wide service could be implemented.