MEA Count ME In survey of health and social care for ME/CFS and Long COVID
7,303 people in the UK completed the ME Association’s survey:
- 85% (6,208 people) had a diagnosis of ME/CFS
- 10% (730) had a diagnosis of Long Covid
- 5% (365 people) were undiagnosed but experienced the 4 core symptoms of ME/CFS
In general, experiences with the NHS were more likely to be rated poor than good and were worse for ME/CFS than Long Covid:
- Only 8% of those with ME/CFS rated the NHS as good or excellent, and with Long Covid it was 15%.
- Top barriers to good care were long waiting times, not being listened to or believed, and ineffective treatments.
- Every region in the UK scored badly. More than 50% of regions received a very poor or poor opinion. Wales, Northern Ireland, West Midlands, Southeast England, and Scotland received over 65%.
- There are many barriers to receiving a timely diagnosis – the main ones being that people were diagnosed with a different condition, not being referred to specialists by GPs, long waits for tests or referrals, and not being taken
69% of survey participants said that the support they had received from the NHS for ME/CFS was poor or very poor.
Only 35% of Welsh participants found the specialist services for ME/CFS to be good or excellent [We don’t know what these ‘specialist services’ in Wales were!]
WAMES will be bringing these results to the attention of the Health Boards in Wales as they work to develop services for people with ME/CFS. Please let us know if you see any improvement in the service you get from GPs or other health and social care professionals. Contact firstname.lastname@example.org or any member of the team.