Tuesday, 16 November 2010
Is it Just M.E. (Myeligic Encephalomyeltis)?: M.E. sufferers cannot give blood.
Is it Just M.E. (Myeligic Encephalomyeltis)?: M.E. sufferers cannot give blood.: "It's great news, in the world of M.E. It was decided on November 1st 2010 that sufferers now cannot give blood. I for one do not think a..."
M.E. sufferers cannot give blood.
It's great news, in the world of M.E. It was decided on November 1st 2010 that sufferers now cannot give blood. I for one do not think anyone would want my blood anyway, considering the health problems I have, but it is reassuring news that the condition is being given the serious research it needs.
http://www.telegraph.co.uk/health/healthnews/8050655/ME-patients-banned-from-giving-blood.html
This is fantastic news, scientists and doctors are waking up to the fact it is not 'all in your mind'. I know it's not, but some people still do not believe this. So to them I say read the article and its even in the Telegraph.
http://www.telegraph.co.uk/health/healthnews/8050655/ME-patients-banned-from-giving-blood.html
This is fantastic news, scientists and doctors are waking up to the fact it is not 'all in your mind'. I know it's not, but some people still do not believe this. So to them I say read the article and its even in the Telegraph.
Saturday, 9 October 2010
Action for M.E conference
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!
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!
Wednesday, 22 September 2010
Love Hearts
Here is a poem that I wrote today I hope you like it.
Love Hearts
The Key to my heart
Stays close and safe
My head telling me
Not to fall for a handsome face
It skips a beat
When you walk on by
Unlock it safely
Or it may die!
Copywrite Fiona Murphy 2010
Wednesday, 8 September 2010
New Research from Dundee Hospital
New research has been done by Dundee Hospital finding further evidence that M.E. is linked to a virus. It is great news that research is being done on this scale and to help Children who have it. It must be very hard for them to deal with. As an adult I have had to deal with prejudice, disgust and no one believing me.
I have copies of all my blood tests from my doctors, as I paid privately to see a neurologist, needing them to show him. This also showed some abnormalities in my blood. I am going to contact Professor Jill Belch to see if these will help in her research. Here's hoping they can and I still strive every day to educate people on this horrible disease which is not all in your mind. I am counting down the days to the conference in London that Action for ME has organised regarding benefits and M.E. I am going to hopefully be educated about the ESA system and to tell them what it is like to have the illness and be constantly preyed on.
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884
I have copies of all my blood tests from my doctors, as I paid privately to see a neurologist, needing them to show him. This also showed some abnormalities in my blood. I am going to contact Professor Jill Belch to see if these will help in her research. Here's hoping they can and I still strive every day to educate people on this horrible disease which is not all in your mind. I am counting down the days to the conference in London that Action for ME has organised regarding benefits and M.E. I am going to hopefully be educated about the ESA system and to tell them what it is like to have the illness and be constantly preyed on.
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884
Tuesday, 10 August 2010
E.S.A. Medical
I was summoned by Atos Healthcare, to attend a medical last month. This is because I receive Employment and Support Allowance, formally Incapacity Benefit. This was my second medical, the first one was done in May 2008 at home. I had struggled to get a home medical, as they wanted me to attend one in Bournemouth, a week after having my spinal surgery. I was very upset by this, as I should have been recovering from my operation, after 8 phone calls, many in tears. I eventually convinced them that I could not walk or sit for long, they expected me to sit in a car for an hour and then have a medical and return home, truthfully there was NO way I could manage that.
So as you can gather I was not looking forward to another one, it drags up many emotional feelings and issues from just trying to get my illness diagnosed. I was very lucky though, as I had the Benefits Advisor from the Dorset M.E. Support Group to accompany me.
It was held in offices above the Weymouth Job Centre. I was shown into the room by the doctor and told to sit down. Immediately I realised that this room was on a main road and under the room was a bus stop. I asked the doctor if we could shut the window as it was so noisy. He asked me many questions about my illness and wanted to know dates and details which were extremely hard to remember. I got upset at having to go through it all again and cried, I just could not stop the emotions from flowing. He took my blood pressure and pulse and told me to stand and do some movements with my arms. Then I had to try and bend, which I can't . I was continued to be fired questions at and the doctor tapped in my answers into a extremely noisy keyboard. I had to stop and stand as my back was hurting, then the vibrations from the bus at the bus stop, halting my thinking.
So by now I was hot and flustered, in pain, confused, agitated by the noise and emotionally drained.
I asked the doctor why I had to keep going backwards over the past. I wanted to move forward and these medicals were not helping me. I was not making up my illness and had medical proof for this. It was like trying to convince people that I was ill all over again.
Well this way my experience and I am sharing it with others. I only wish some of the politicians could be in my shoes and see what its really like.
So as you can gather I was not looking forward to another one, it drags up many emotional feelings and issues from just trying to get my illness diagnosed. I was very lucky though, as I had the Benefits Advisor from the Dorset M.E. Support Group to accompany me.
It was held in offices above the Weymouth Job Centre. I was shown into the room by the doctor and told to sit down. Immediately I realised that this room was on a main road and under the room was a bus stop. I asked the doctor if we could shut the window as it was so noisy. He asked me many questions about my illness and wanted to know dates and details which were extremely hard to remember. I got upset at having to go through it all again and cried, I just could not stop the emotions from flowing. He took my blood pressure and pulse and told me to stand and do some movements with my arms. Then I had to try and bend, which I can't . I was continued to be fired questions at and the doctor tapped in my answers into a extremely noisy keyboard. I had to stop and stand as my back was hurting, then the vibrations from the bus at the bus stop, halting my thinking.
So by now I was hot and flustered, in pain, confused, agitated by the noise and emotionally drained.
I asked the doctor why I had to keep going backwards over the past. I wanted to move forward and these medicals were not helping me. I was not making up my illness and had medical proof for this. It was like trying to convince people that I was ill all over again.
Well this way my experience and I am sharing it with others. I only wish some of the politicians could be in my shoes and see what its really like.
Saturday, 24 July 2010
Refresh and Move forward Session at Dorchester
I attended a session last month at Dorchester held by the Dorset M.E. Support Group. There were two occupational therapists there from the M.E. Clinic in Wareham. There were about 8 of us there all at different stages in our illness. I wanted to share some of the points made for anyone who could not attend or has an interest.
We talked mainly about how to move forward in recovery from M.E. and the chart below shows how this could work.
CFS Symptoms
Acceptance and Choice
Stabilisation
Controlled Activity Increases
This is the way to move forward but what often happens is that when activity is increased you go back to the start and your symptoms get worse, therefore having to start the process again.
The Stabilisation area is a consolidation whilst gaining confidence area.
This way forward was created by Diane Cox an Occupational Therapist at The Romford Hospital specialising in M.E.
It was also explained what happens to you when you have M.E. Your HPA Axis has gone wrong. Its your Hypothalamus, Pituitary and Adrenal System that controls a lot of different things in your body. I have tried to explain this to people, that ask and those who do not understand the condition look at me very cynically. I know something went wrong when I got shingles and I have not returned to my previous healthy self, so my fight for understanding still seems to go on.
What helps
Acceptance
Knowledge
Peer Support
Prioritising Time and Activities
Prayer and Belief
Understanding from others
Saying No
Support from significant others
Reminders
Preparing and Planning
Relaxing
Low energy hobbie
Routines
Diet
Avoiding Stressful situations
Ending on this note I had to have another medical for my ESA benefit and I will post a separate blog on that issue another time.
Please contact me if you wish to discuss this further: fifimurphy@hotmail.co.uk
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