Introducing WAMES volunteers: Jan Russell

The first in a series introducing WAMES volunteers: the Chair

Back in 2000 I was one of a small band of support group reps who got together to discuss what we could do to improve services for people with ME. I had been active in the Mid & West Wales Support Group for many years. Devolution had just removed control for most services from London to Cardiff, and ME wasn’t on the new government’s horizon. WAMES was established in 2001 and I became the volunteer Treasurer.

Jan with lockdown hair, 2021

It very quickly became clear that book keeping was not my forte so the following year I gladly exchanged roles with the Secretary! Finally 9 years ago I became chair. That was not an easy decision to make as I wasn’t sure I was well enough. However, I was motivated, having developed ME following 2 bouts of post viral debility in the mid 80s and I was very frustrated, even angry, that recognition and services were not improving.

Working as part of a team who understands ME is the most stress-free way to make a useful contribution, though I have to admit to having to operate outside my comfort zone on occasion. My husband (and carer) has made that possible and has provided important support! As well being a trustee and chair (leading meetings and planning WAMES activities) I have also led the health services campaign, and got involved with the website, magazine, facebook… (the list goes on!).

There is so much work I could be doing with WAMES but I have found it important to develop other interests as well, to keep a balance in my life. Many of these activities had to replace the pastimes I could no longer do once I became ill and I now enjoy genealogy, pottering in the garden (on better days), wildlife watching (often from my house window) and reading crime novels.

Jan speaking at the Senedd, 2018

Looking back I can see how much I have learned and the new skills I have developed while volunteering. Before I became ill I was a librarian working first in schools in Scotland and then in Aberystwyth university. Making information available to people is second nature to me and I have enjoyed helping WAMES provide information and support to many families to help them access what few services are available.

l wish I could say I could also see how successful WAMES has been in influencing service improvement. That has been a painfully slow process, like water dripping on a stone. But I am relieved to say I can see an improvement in recognition and understanding of ME in Wales. I am sure the breakthrough is just round the corner and I am proud to have played a part in edging us towards that!

Read other volunteers’ stories: