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!
4 comments:
Unless the Canadian Consensus Criteria are used to select patients who actually have neurological M.E. for the tissue sample bank, and not the psychiatrist-draw-up Oxford or London Criteria, it will be a tissue bank of people with psycholog...ical fatigue.
Why aren't AfME demanding that the CCC be used in all tissue banks and research? We have had three decades now of being deliberately muddled up with people who have psychological problems, not M.E.
Whatever is Myelgic Encephlopathy?
I have Myalgic Encephalomyelitis as classified by the World Health Organisation.
"WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E. ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder."
The WHO ICD 10 Classification system is binding and mandatory on the UK Government.
There is no WHO entry for myeligic encephlopathy or even for myalgic encephalopathy.
I am not sure why you have used –opathy, but it is not a proper term or name for ME which is Myalgic Encephalomyelitis. Opathy is not recognised by the World Health Organisation and it is not an internationally accredited name or term for anything. The ME that Action for M.E use is Myalgic Encephalomyelitis, not opathy.
In terms of the conference I can see from your blog that you were very glad to have actually got to the conference at all.
I also think that I have to point out that the name of the AfME conference was, “Work, welfare benefits and M.E – is anyone listening?” as your header sort of implies that the conference title might be the same as your header.
The presentations from the two people with ME who spoke of their own experiences of the benefits system were Ok, but they did not get to the heart of the problem.
This was because AfME do not have sufficient understanding of the real issues involved and so selected people who related their experiences as they had been asked to do.
There was little by way of description of the appalling appeals system and the issues of the Tribunals and representation for example.
This is because AfME’s Welfare Benefits Helpline only offers a very basic service and the person who runs that service is not consulted on policy matters or on matters like the conference.
The researcher from UEA who delivered the presentation on benefits and ESA left a very great deal to be desired as she made a number of factual errors and inaccuracies and failed to understand the key issues as far as ESA is concerned.
The issue of compulsion for example.
This was because she considered that ESA was a good thing, and all other matters concerning ESA had to be seen in a positive light.
I together with Catharine Hislop and Christine Harrison of BRAME tried to raise the very important matter of AfME actually doing something positive about the awful situation people with ME are in about benefits, instead of simply swapping our horror stories with each other.
This was a bit too much for “superbly suave Peter Spencer” and he steered the conference away from the conference agenda so that there would be no further question and answer sessions.
Instead we were to do more work in small groups around our individual tables as the “superbly suave Peter Spencer” said that we could derive greater benefit from our own conversations and networking, rather than Q & A sessions with the researchers.
Incidentally, I think I ought to point out that the “superbly suave Peter Spencer” as you refer to him on your blog is not the Chairman of AfME he is the CEO.
The Chair of AfME, the newly appointed Allan Cook was in attendance incognito.
Mr. Cook used to work for the Post Office and was responsible for forcing through the Post Office Branch Closure Programme.
He did not listen to any of the consultations that he was obliged to carry out in relation to the closure programme, and neither did the Government.
Mr. Cook’s reason for doing so can fairly easily be ascertained, in my view, as he received a number of substantial incentive and bonus payments for pushing through the closure programme.
Precious little time or respect for the needs of the sick and disabled there, in my humble opinion.
I have to point out that even Ed Milliband in his first Leader’s Address to the Labour Party Conference acknowledged that it had been a mistake for the Government not to have listened to the results of the consultations about post Office closures.
He almost got as far as apologising, but not quite.
So now we have Mr. Cook in charge of AfME.
I wonder if he has learnt anything about the need to listen to people, or is he going to carry on with AfME’s inglorious traditional policy of AfME operating in a undemocratic and no transparent way and ignoring the legal and constitutional rights of members to vote on policy and elect a Board of Trustees?
Ciaran Farrell
AfME member and conference attendee
Thanks for your comments. I have take into account what you have said and changed a couple of details. But I am just trying to give information to people who maybe cannot do the things I can. If it was not for my local support group then I probably would have had a nervous breakdown. I am trying to have a career in writing and this blog is something I do to help others. This blog is of my own experience of having M.E and Spinal Stenosis.
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