Cwm Taf Morgannwg UHB is “aware of the revised ME/CFS NICE guideline”

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.

Cwm Taf Morgannwg University Health Board’s Chief Executive Paul Mears asked their Executive Director of Therapies and Health Sciences to respond.  Lauren Edwards shares her overview with WAMES:

“Your email raised queries in regard to our Health Board’s response to the recent publication of updated NICE ME/CFS Guidelines and I have linked in with key colleagues on this matter.

Whilst we do not have a dedicated ME/CFS service within CTMUHB, I have received assurance from colleagues within our core services that they are aware of the revised guideline. As you are aware, the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be recommended in the management of ME/CFS.

Cwm Taf Morgannwg University Health Board provides primary, community, hospital and mental health services to the 450,000 people living in three County Boroughs: Bridgend, Merthyr Tydfil and Rhondda Cynon Taf. [CTUHB]

CTMUHB’s Long-Covid Rehabilitation Service (LCRS)

Your email quite rightly highlights the overlap in symptoms between ME/CFS and long-Covid. Within CTMUHB’s Long-Covid Rehabilitation Service (LCRS), we support and coach people with fatigue management through activity diaries and various strategies to help manage their energy levels throughout the day. We specifically do not include a physical rehabilitation element within our service, based upon our awareness of post-exertional malaise amongst the people that we see in our LCRS.

Welsh Government support request

In co-ordination with other Health Boards across Wales delivering long-Covid services, our CTMUHB LCRS submitted a case to Welsh Government earlier this year outlining how the services could be expanded to support people experiencing other post-viral syndromes and the additional resource that this would require. On this occasion, additional resource was not allocated to expand the remit of the LCRSs across Wales for 2022/23 but please be assured that this remains our ambition for 2023/24.

As you point out, the Health Minister has commented upon the possible expansion of community models to treat and support people with other long-term conditions and so we are hopeful that Welsh Government will be able to support this approach for the future.

Thank you once again for making contact on this important matter.”

WAMES would like to hear from anyone with ME/CFS in the CTMUHB area about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021. Please let us know if your GPs are aware of the new guideline and understand exercise intolerance and PEM, so we can continue to work for service improvement. #ImplementNICEmecfs     Contact jan@wames.org.uk

Read what other health boards say: Aneurin Bevan; Betsi Cadwaladr; Cardiff; Powys Swansea Bay.