Severe & very severe ME in Wales

Rob Messenger’s son, Cerith, has very severe ME. His local Senedd Member has offered to bid for a debate in the Senedd to raise concerns with the Health Minister about the lack of provision for people with severe and very severe ME.

We want to find out how many people in Wales are at this level of severity, understand their lived experiences, and work with the Welsh Government and the NHS to develop appropriate provision which can properly meet their needs.

If you have severe or very severe ME, or you are caring for someone who has, Rob would like you to get in touch. Please contact him by email at robertmessenger@btinternet.com

The NICE Guideline says:

• People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound. 
• People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.

See also

WAMES call for safe hospital care for severe ME in Wales

ME Voices Wales – have your say!