11th Annual Conference and AGM, May 2002
On Minds, Mice and Mortality
Three of us, Sarah Archer, Barbara and myself, went to the Edinburgh Conference very aware of the fact that the next one will be held in Cambridge on 11th May 2003 at the University Arms Hotel.
The Fife, Lothian and Borders Region had arranged a Meet and Greet session on the Saturday evening and we hope to do the same in Cambridge, as it was a great ice breaker.
The Conference began with a sprightly welcome from Mary Curran, Chair of the Group. The first talk was by Dr Bruce from Manchester on Lupus and Fatigue. He defined fatigue as physical or mental weariness resulting from activity. As you well know, it is very common in lupus patients and in one survey 80% of patients experienced fatigue at some time. On his scale of 0-7, with 7 being seriously fatigued, the rating for the general population is 2.3 while for lupus patients it is 4.7. Many patients sleep badly and fatigue can be caused by brain tiredness due to disturbed or insufficient sleep. This results in waking up unrefreshed, being slow to get going, being at your best between 11am and 2pm, but crashing between 2 and 3pm. To improve your sleep you must:
Set realistic goals and avoid nostalgia for past achievements.
Take exercise - pushing yourself a little each day and recording your progress.
We are surprised by some of the things Dr Bruce said you should NOT do before bedtime - dont read, dont watch television, dont eat and avoid caffeine and alcohol (what is there left to do?!). You should not clock-watch during the night to see how time is passing. His main message was that sound sleep is very important for fatigued lupus patients.
Dr Max Field from Glasgow talked to us about mice and SLE. He put the case for using mice in research, in spite of the fact that all animal experiments are controversial. It so happens that a mouse with SLE has very similar symptoms to humans, and is therefore very suitable for research. Because they can be used in large numbers and give results in a few weeks, they make possible research which would be extremely difficult to carry out on humans or large animals. Results have already been achieved by the use of mice and the prospects for the future are good.
Dr Graham Hughes from St Thomas Hospital then brought us up to date on his work on Hughes Syndrome - sometimes know as sticky blood. After 30 years of work on this condition, he has shown that it can lead to thrombosis, miscarriages, migraine and strokes. Many people who in the past have been diagnosed as having lupus or multiple sclerosis are now known to have been suffering from sticky blood. The cheapest and simplest way to treat this is to take 75mg of aspirin every day. Other treatments being explored include warfarin and heparin. Dr Hughes has a great sense of mission over this discovery and appealed for doctors and patients to be more aware of Hughes Syndrome when making a diagnosis on patients with lupus-like symptoms.
The AGM held before lunch went smoothly until the Chairman encountered a mini rebellion from the ranks over the question of whether regional groups should be allowed to spend the money raised by their groups on supporting local projects, rather than sending every penny to Romford. Several of the audience argued that more money would be raised if those who contributed could see some tangible evidence of their contribution bringing local benefits. The Chairman argued that if groups need services from the National Office and wish to support major research projects, these have to be paid for by the groups. After a lively debate, it was agreed that this problem would be addressed at the meeting of the National Council in September.
Our final speaker, following lunch, was Professor George Nuki from Edinburgh whose talk was titled Improving survival in patients with lupus. This was perhaps a sensitive subject to tackle in front of a large audience of lupus patients, but the good news is that although in the 1950s only 50% of lupus patients were still alive 5 years after diagnosis, by the 1990s more than 80% were alive 10 years after diagnosis and the gap between diagnosis and demise is getting longer all the time.
Dr Bruce, Dr Zoma from Glasgow and Professor Nuki made up the Medical Panel to answer many excellent questions from the audience and they gave very good, thoughtful replies.
A short entertainment provided by Dr Peter Baylis gave delegates a taste of Scottish style music on the accordion. The Conference Draw had some great prizes, including a television that was kindly put back to be auctioned and yielded 60, helping towards a total Draw take in excess of 600! The Lupus Shop also did splendidly, and delegates must be congratulated for their generous support on the day.
Ronnie Gourley, the Chairman of LUPUS UK and Conference MC, thanked Fife, Lothian and Borders Group for an excellent Conference and looked forward to Cambridge 2003. We said goodbyes over tea and shortbread and had really enjoyed our Edinburgh stay.
David Aldrich, Cambridgeshire Lupus Group