Members of ME/CFS Friendship Group in Gloucestershire were invited by members of the Patient Experience Team at Gloucestershire Hospitals NHS Foundation Trust to join them at an M.E. Awareness stand in the Main Atrium of Gloucestershire Royal Hospital on Thursday 14 May, during #MEAwarenessWeek.
“On display there were details of the local group, as well as resources provided by both the ME Association and Action for ME. We would like to sincerely thank both charities in providing us with information to display at our first public stand in one of our County hospitals.
It was a very good awareness event with discussions between a mix of long-time group members (and some recent joiners), people who were unaware of the ME/CFS Friendship Group, people who were unaware of ME/CFS, the Patient Experience Team and a few hospital staff. One health check nurse had a great long chat with members – as nobody was attending her Blood Pressure check stand which was just alongside!”
“One young lady got quite emotional when we spoke to her about the friendship group, she felt that she had finally found people who genuinely understand.
There were also a couple of people who took information for others – a newly-diagnosed friend, and a relative with a diagnosis but not being offered any further help. Others spoke about how difficult it was to keep their jobs and look after their families.
A common theme was the lack of GP understanding & being “fobbed off”… Unfortunately we still have a long way to go with this aspect.
Some people mentioned the Bristol ME Service (who are commissioned to help people within the County) and the problem that once you have completed their courses, then, although re-referral for new symptoms is possible, they have no capacity to offer ongoing support to all the long term sufferers with ME/CFS.
Even for our more moderately affected members who volunteered their time and energy it was described as an event which made great use of their limited spoons and was very definitely worth the considerable energy that they expended!
The Trust staff were very helpful and enthusiastic and took the lead in setting up the stand which was a great help. We are already looking forward to assisting with future information opportunities.”
ME Association Comment:
It is wonderful to hear this local Gloucestershire support group hosted an ME/CFS information stand at the local hospital during ME Awareness Week 2026. Using resources from the ME Association and Action for ME, they helped raise awareness and understanding among healthcare professionals. Well done to everyone involved!
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
