ME/CFS in Wales

Since the new NICE guideline for the diagnosis and management of ME/CFS was published in October 2021 WAMES has been asking the 7 Health Boards in Wales if they plan to implement the guideline and how they plan to improve care.

Some Health Boards have responded more positively than others, though all claimed to be encouraging staff to use the new NICE guideline. The focus on COVID and lack of funding were often cited as reasons for lack of action in developing management services.

WAMES also approached the Welsh Government asking them to play a part in encouraging service development, and finally in March 2023 the Health Minister, Eluned Morgan, announced some funding to extend long COVID services to ‘people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions’.

The money is welcome, though many would say ‘too little too late’! WAMES has been following what Health Boards are planning to do with that money.

Aneurin Bevan UHB

ABUHB have not announced any plans to develop services and have not responded to WAMES’ enquiries.

Betsi Cadwaladr UHB

BCUHB began talks with WAMES about developing services for ME/CFS long before money became available. Those plans are now being incorporated into plans for a chronic conditions service. There is still an interest amongst some staff members in meeting the needs of people with ME/CFS in line with NICE, including the new lead of the CFS/ME service in Llanfairfechan, and WAMES will continue to engage with the service commissioners to ensure ME/CFS doesn’t get overlooked again.

Cardiff and Vale UHB

Plans are well underway to develop a Long Term Conditions service in the Cardiff and Vale area.  A Co-production group of people interested in many long term conditions has been working on self-management tools such as the development of the Keeping me well website. This is a work in progress and its advice for people with ME/CFS still needs to be improved!

WAMES has been contributing information for the service design process, and planners have been investigating other ME/CFS services for insights and exploring the possibility of medical input to this rehabilitation service.

A soft launch is expected in 2023. As they aim to cater for many conditions with a limited budget and staff, we may find that it will take time to roll out all aspects of an ME friendly service. Hopefully the invitation to WAMES and people with ME to offer constructive criticism will continue.

Cwm Taf Morgannwg UHB

WAMES has met with service designers to explain the needs of people with ME/CFS and promote the NICE guideline. Plans for the Long Term Conditions service are underway and will aim to include services for ME/CFS in line with NICE, although it is uncertain whether medical professionals will be involved. [A GP’s involvement has now been confirmed 14/6/23]

Hywel Dda UHB

Plans to extend the Long COVID service to other conditions are in the early stages but 2 staff members are actively investigating the best way to integrate ME/CFS services into that. They are also talking with WAMES and taking into account the results of engagement with patients in 2014-8.

Powys THB

WAMES has received no information about any plans for an ME-friendly service in Powys and has received no request to engage with patients and carers.

Swansea Bay UHB

SBUB had offered some support previously to some people with ME/CFS through their Rheumatology Occupational Therapy service. They have not revealed any plans to develop further services and have so far not responded to WAMES’ enquiries about it.

You can help!

WAMES will continue to engage with the Health Boards as much as we can. The more information we have about the way the NHS is treating people with ME, the better we can advocate for you.

• Tell us about your recent NHS experiences
• Ask your GP what is recorded about you in your NHS record. Particularly how your illness is coded (Read, SNOMED etc.)
• Ask for a confirmation of an ME/CFS diagnosis if you do not have one. Are they familiar with the NICE guideline?
• Take part in the MEA’s #CountMEin survey of NHS experiences.