Patients urged to have needs assessed.

Reading Chronicle 10 April 2008

Campaigners are calling for sufferers of a debilitating illness, to have their needs properly assessed.

People with Fibromyalgia, a condition similar to ME, say they are not being consulted on how it affects them and how services could be shaped, in contrast with a wide reaching consultation on ME by Berkshire West Primary Care Trust.

Lindsey Middlemiss of the West Berks ME and FM Group said: 'As part of our needs assessment to be carried out by the Berkshire Primary Care Trusts, ME patients are being asked, to fill out a short questionnaire, about where they receive information and services, whether they have tried any therapies, and what if anything, helps them feel better, but this has not been extended to include Fibromyalgia. We were pushing for that to happen but it doesn't look likely because of the large number of people involved. We're talking about the tens of thousands of people in Berkshire who suffer with it. It overlaps with ME but they are slightly different. With ME the fatigue is worse and with Fibromyalgia the pain is worse. We get cases of people coming to us and saying that they have been to their doctor, and they don't know where to refer them because there's no specialist care in Berkshire. But we are going to continue to ask questions and get the Berkshire MP's involved'.

Reading East MP Rob Wilson, who has chaired the All Party Parliamentary group on Fibromyalgia for three years said: 'In this country there are fashionable illnesses and unfashionable illnesses and ME is in the headlines and in the media quite frequently and Fibromyalgia isn't. But they are similar in terms of the effect they have on people's lives.

There is no government investment in Fibromyalgia at the moment. I'm not aware of any specialist service/s in Berkshire, but sadly that puts it on a par with many other places'.

ME campaigners welcome the needs assessment in Berkshire and Eileen Shoosmith, of Reading Area ME Support Group, said: 'In recent months, since talking to health services commissioning staff locally, we have found them very responsive to the idea of setting up a much needed specialist service, once they've been able to access, just what will be involved, and providing they can find the money for it.

'Many GP's who care for people who have ME and Fibromyalgiia, feel at a loss, as to how to provide ongoing care at their surgeries. Lots of patients, with these illnesses feel abandoned by the health service, and many are so ill they often cannot summon up the strength to get out of the house to see their doctors, for even basic help to improve their worst symptoms'.

Berkshire West PCT spokewomen Camilla Bashaarat said: 'Patients with Fibromyalgia, may have some symptoms in common with those seen with ME, but again research is yet to identify what the link, if any is between these conditions'.