Work, welfare benefits and M.E. - is anyone listening?
Saturday the 25th of September and I attended a conference held by Action for M.E.
I am extremely lucky to have a sister who lives in London in Woodford. So after a short tube ride from Woodford to Liverpool Street station, I emerged from the station and started my search for the Allen & Overy building. Walking towards Brushfield street, clutching my map in one hand and having my trusty walking stick in the other. Someone spotted me, looking at my map and he asked me if I was going to the conference, so we found our way together to the most fabulous building I have ever been in. We were guided to the escalators down to the basement where the conference was being held. I was given a badge with my name on and I looked around. There were boards and computers laid out with research and information on, but my brain could not cope with the information, so I bypassed these and heading over to the refreshments area. It is there that I fell in love. Gluten free biscuits, with load of different varieties to try. It is quite hard to balance a cup of tea and biscuits, whilst using a walking stick but I was determined to. So glad I did though, my biscuit addiction returned, they were heavenly.
Biscuits aside I made my way into the conference hall and joined Justin and Midge Mitchell both from the Dorset M.E. support group. It was a large room with large windows, letting in as much light as possible, and there were about 15 round tables with seating around. As everyone made there way into the conference room it became apparent that at each table there was one reserved seat. This was due to the fact that each table had one member of the University of East Anglia team sitting in it.
From my own personal view the conference had two halves. The first was about Benefits, two people gave their own experiences of M.E. and claiming benefits. The second half was about the research that the University of East Anglia is doing and results from the Lottery funded National M.E./CFS Observatory.
I won't go into too much detail of all the speakers etc as this will all be on Action for M.E's website as it was being filmed. I just want all the people with M.E. who could not make it to the conference to know what it was all about.
The first half started with an introduction by the superbly suave Peter Spencer the current Chief Executive. Next were two sufferers telling their own personal stories about how they got M.E. and how they had manged to navigate their way through the benefits system. Then followed Daniel Groves from the Department of Works and Pensions and Neil Coyne from the national Disability Alliance organisation. They made their speeches and then followed a question and answer section. I found all of this very emotional and know that even if I had been brave enough to ask a question I would have just burst in to tears. I have come a long way in the last few years and fight really hard to make people aware of how horrible this illness is, listening to their predictions for the future brought back all the bad things that have happened and the thougth of having medicals every six months is gut wrenching. They did get an extremely intense grilling and it was difficult to listen to at times.
After a long awaited break. I had tried hard not to close my eyes and put my head on the table, but I did have to stand for a while, as my back was not happy in sitting for so long. More biscuits and a cup of delightful camomile tea. A visit to the poshest loos I have ever been in. I was interested to hear more.
The University of East Anglia were up speaking next with some very interesting facts and research. We then had a group discussion on each of our tables on how we could improve things for people with M.E. These ideas were all written down on large post it notes and stuck all together in the refreshments area. I know from our discussion, the top point was making more people, ie the general public aware of what the illness is and what it is like for someone to have it.
Next session and Luis Nacul of the London School of Hygiene and Tropical Medicine showed us his research and his studies showed that there could be a possible 10,000 new cases per year.
Finally when I was completely worn out, a cloud lifted and a rainbow came into view with a pot of gold at the end. The man that manged to achieve this was Professor Derek Pheby the project Co-ordinator for the disease register. The future plans were to have a tissue sample bank and try to get M.E. classed as a Neurodegenerative disease, proving that's where it belongs.
Wow what a day of emotions. I was really glad to be able to attend and it has taken me a while to recover.
You will be able to see the film shortly of the conference I hope on
http://www.afme.org.uk/
It was superbly managed and I would like to thank the people who organised it. It has given me hope for the future. Also big thumbs up to the chef who made the wonderful Gluten free biscuits, I have to admit I had quite a few!
