NHS health chiefs in Wales have been given the green light to develop a framework for ME/CFS services – but no extra money has been found to speed up the process.

Responding to recent publication of the report of a special ‘Task and Finish’ group set by Wales health minister Edwina Hart, WAMES – the umbrella body for patients with ME/CFS – commented:

“At last there is no excuse for people with ME to be ignored by local health boards but we’re concerned that services will be based on recommendations which were not influenced by patients’ views and the evidence from biomedical research.

“However, no money has been allocated to develop services so we don’t expect to see CBT/GET clinics springing up all over Wales soon. 

“WAMES will continue to take part in all consultations and will be launching a major awareness campaign for professionals in the autumn. In order to monitor whether services are actually improving, we would also like to hear people’s healthcare experiences.”

The ‘Task and Finish’ Group was ordered to collect submissions by  November 30 last year. All local health boards responded as did WAMES – who were able to make a formal presentation – the ME Association, the Young ME Sufferers Trust and various therapist-led bodies.

The report, which came out in June, said there is little evidence to support how the illness should be assessed, diagnosed and treated. The NICE guideline of August 2009 which set out general principles had been heavily contested by some patient groups; a judicial review was launched, but overturned in court.

The official report said a ‘Map of Medicine’ had been set up in Wales as an online clinical knowledge base designed to provide specialist-level information to the right healthcare professional at the right time. This now contained an ‘international status’ care pathway for ME/CFS, which had been developed by representatives of the royal colleges and experts from across the UK. Each local health board could now produce their own version.

The report acknowledged that two existing NHS services for people with ME/CFS in North Wales offered management programmes but not diagnosis nor lead physician involvement. And the in-patient pain control service at Bronllys in Powys, while offering a service to ME/CFS    patients, was not specifically designed for them.

The  59-page report can be downloaded at http://tiny.cc/0fsb9

There may be a speaker on the subject from the Wales Assembly Government at the ‘ME Question Time’ in Cardiffon October 23, but a name has not yet been confirmed. This meeting is being organised jointly by WAMES and the ME Association.

Jan Russell, from WAMES, said that people in Wales who would like to receive updates from her organisation about the development of services and their campaigns can email her at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or use their helpline on 029 2051 5061.