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Action on M.E member Miriam Potter has coordinated a successful media campaign to open up a specialist NHS clinic in Reading.. She talks to Trina Wallace.

When Miriam Potter was diagnosed with myalgic encephalopathy eight years ago she was surprised to hear that there was nothing her doctor could do to help.

“She said she was always there if I wanted to talk but that I should try and make the most of my life,” says Miriam, now 41.

Miriam, who realised there was something wrong when she spent weeks recovering from the flu, went home and cried. “I got the grieving out of my system,” she remembers.

In 2000, a year later, Miriam was forced to give up her job working at a builder’s contractors. She was struggling to cope with the tiredness, fits and lack of energy which characterise M.E. But eager to make a difference, she decided to start her own campaign to get the local Primary Care Trust to set up a specialist clinic for people living with the illness.

Establishing relationships

Already a case study for Action on M.E, Miriam knew how important it was to have a communications strategy for her campaign. She started ringing round the local Reading press.

“I phoned local radio stations like Radio Berkshire, newspapers such as the Reading Evening Post and TV news programme Meridian Tonight to tell them about what I wanted to do,” says Miriam. “The idea was to establish relationships which I could build on.”

And after joining forces with her local M.E support group, this is exactly what Miriam achieved. She emailed her newly established media contacts with press releases about the group’s latest campaigns and followed up with phone calls. “The press like to have access to case studies and I knew that I offered something different from the usual PR person when I called to follow up a press release,” she says. “I have M.E and could tell them what it was like to have the illness and exactly why we needed a specialist clinic in the area.”

Seizing opportunities

Over the years local print and broadcast media have run ongoing coverage of the campaign, especially during M.E Awareness Week in May. Miriam has made sure she’s mentioned the campaign when she’s been interviewed by journalists from magazines like She and Evangelical Now and for a piece she featured in for the BBC’s Video Nation. This has raised awareness of the campaign and put pressure on the local Primary Care Trust.

Indeed, they’ve agreed to set up a clinic by the end of this financial year offering people with ME cognitive therapy, counselling and physiotherapy.

“I’m really proud of the campaigning work our group has done,” says Miriam. “I used to want to throttle journalists who wrote about ‘the yuppie flu’ or said that ‘ME was all in the mind’.”

Pursuing goals

Miriam’s commitment to her role as a media volunteer and organising the press and PR work for her local M.E support group is remarkable considering how much her life has been affected by the illness. She can only walk for one minute a day and suffers from terrible nightmares and exhaustion.

Her personal aim is to be able to walk far enough to make a trip down to Devon, where her parents live, a possibility in the near future. “It’s important to have goals,” she says.

And she’ll be applying this attitude to future communications work with the ME charities and the local support group she’s involved in. “We’ll be keeping up the pressure on our local Primary Care Trust until the clinic is open,” she says. “And I’m happy to carry on sharing my story because I know it can make a difference.”