Friday, 24 October 2008
Monday, 20 October 2008
Lobby ur MP and MLA
sign into visit my society.org and lobby your MP or MLA at the lack of services in Belfast for ME sufferers. Strength in numbers !!""
Sunday, 19 October 2008
Lord Mayor of Belfast speaks at Charity Fundraiser in Aid of ME
Belfast's Lord Mayor, Tom Hartley supports parents in raising awareness and funding into ME Research. Mr Hartley give a rousing speech in the Felons Club in Belfast on Friday 17th October 2008 which can be heard by clicking on the link below. He pledged his support to the Christie family and promised to help in any way he could.
http://www.bebo.com/FlashBox.jsp?FlashBoxId=7992620099&
Picture: Paul Christie, Tom Hartley (Lord Mayor), Antoinette Christie
Article in Andersonstown News - 16 August 2008
Here we are again, our third annual fundraiser in aid of ME Research.
To date in Belfast we have raised £15,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately, the government's continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland.
There is a lot of evidence which supports the fact that ME is a very real physical illness. Recent research highlights the prevalence of postural orthostatic tachycardia syndrome in people with ME, increased oxidative stress which may be responsible for some of the symptoms — such as pain — seen after exercise, abnormal acetylcholine metabolism and increased neutrophil (white blood cell) apop-tosis consistent with an activated inflammatory process. Our own Dr Jonathan Kerr's (originally from Belfast) research into gene expression has also shown that the genes of people with ME express differently from those without.
We are hopeful therefore that with more research we may find the cause of ME and be able to cure it. Failing that, we hope through biomedical research to find appropriate treatments for those living with this condition.
Please support our continued campaign for biomedical research into ME by attending our fundraising event on Friday, October 17 at 8pm in the Felons Club, Falls Road. We have young local talent lined up to take part in A Song 4 ME. There will be a disco, bal- j lots and once again our charity auction including a signed and framed Celtic shirt, Celtic ; mirror, a collection of signed books and much-sought-after tickets for the X-Factor Tour being held in March 2009 -these tickets have not even gone on sale yet. There are many ballots including children's toys etc. Also in attendance on the the night is the Lord Mayor himself, Tom Hartley. Ticket price £5 or pay at the door. All welcome.
Can we take this opportunity to thank yourselves, the Andersontown News, for your continuous support over the past three years in helping us raise much-needed awareness into ME.
Antoinette and Paul Christie and Familv.
To date in Belfast we have raised £15,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately, the government's continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland.
There is a lot of evidence which supports the fact that ME is a very real physical illness. Recent research highlights the prevalence of postural orthostatic tachycardia syndrome in people with ME, increased oxidative stress which may be responsible for some of the symptoms — such as pain — seen after exercise, abnormal acetylcholine metabolism and increased neutrophil (white blood cell) apop-tosis consistent with an activated inflammatory process. Our own Dr Jonathan Kerr's (originally from Belfast) research into gene expression has also shown that the genes of people with ME express differently from those without.
We are hopeful therefore that with more research we may find the cause of ME and be able to cure it. Failing that, we hope through biomedical research to find appropriate treatments for those living with this condition.
Please support our continued campaign for biomedical research into ME by attending our fundraising event on Friday, October 17 at 8pm in the Felons Club, Falls Road. We have young local talent lined up to take part in A Song 4 ME. There will be a disco, bal- j lots and once again our charity auction including a signed and framed Celtic shirt, Celtic ; mirror, a collection of signed books and much-sought-after tickets for the X-Factor Tour being held in March 2009 -these tickets have not even gone on sale yet. There are many ballots including children's toys etc. Also in attendance on the the night is the Lord Mayor himself, Tom Hartley. Ticket price £5 or pay at the door. All welcome.
Can we take this opportunity to thank yourselves, the Andersontown News, for your continuous support over the past three years in helping us raise much-needed awareness into ME.
Antoinette and Paul Christie and Familv.
Saturday, 13 September 2008
Chairty Fundraiser in Aid of ME Research
Charity Fundraiser in Aid of ME Research is to be held in the Felons Club, Belfast on 17 October 2008, tickets £5 - disco, charity auction and other surprises. Dont miss out - book your tickets now. Can pay at door too. A great night out for all - not to be missed. Help raise money for a worthy cause and enjoy a great nights entertainment too.
Thursday, 28 August 2008
ME care shoudn’t be down to luck
Thursday, 28 August 2008
Comments from Bristol re Response to Parents in the Belfast Telegraph
http://www.belfasttelegraph.co.uk/opinion/letters/me-care-shoudnrsquot-be-down-to-luck-13955423.html
The letter that Paul and Janet McCann wrote (Specialist help for ME sufferers is lacking, Write Back, August 25), telling of the great help, advice and support they have had for their teenage daughter, who is severely affected with ME, and for which they are relieved and most grateful, illustrates just how enormously variable the provision of care can be for all people with ME.
Especially compared with the experience of the Christie family for their loved one David, similarly affected (ME has stolen my son's life, but there's no help', Belfast Telegraph, August 12), to which they are replying.
But it shouldn't be a matter of luck, should it?
We're all delighted to hear about the ones who get the best care and do well; it's the ones who don't whom we remain concerned about.
It shouldn't be hard to figure that the best currently available care should be the minimum standard for all, rather than being regarded as exceptional for a fortunate few.
DR JOHN H GREENSMITH
Bristol
Comments from Bristol re Response to Parents in the Belfast Telegraph
http://www.belfasttelegraph.co.uk/opinion/letters/me-care-shoudnrsquot-be-down-to-luck-13955423.html
The letter that Paul and Janet McCann wrote (Specialist help for ME sufferers is lacking, Write Back, August 25), telling of the great help, advice and support they have had for their teenage daughter, who is severely affected with ME, and for which they are relieved and most grateful, illustrates just how enormously variable the provision of care can be for all people with ME.
Especially compared with the experience of the Christie family for their loved one David, similarly affected (ME has stolen my son's life, but there's no help', Belfast Telegraph, August 12), to which they are replying.
But it shouldn't be a matter of luck, should it?
We're all delighted to hear about the ones who get the best care and do well; it's the ones who don't whom we remain concerned about.
It shouldn't be hard to figure that the best currently available care should be the minimum standard for all, rather than being regarded as exceptional for a fortunate few.
DR JOHN H GREENSMITH
Bristol
Specialist help for ME sufferers is lacking
Monday, 25 August 2008-
Comments made in the letter page of the Belfast Telegraph re article below
http://www.belfasttelegraph.co.uk/opinion/letters/specialist-help-for-me-sufferers-is-lacking-13948642.html
We write referring to the Belfast Telegraph article (August 12) on a mother coping with her 15- year-old son David, who suffers from ME.
As this article highlighted only one family's experiences and views, we thought we would like to make you aware of our experience which differs considerably from the one in your article.
We are parents of a teenage daughter who has severe ME. Five years ago as we struggled to find a diagnosis, we watched our formerly active child become bed-bound, unable to hold a conversation and suffer from extreme light and sound sensitivity.
Like the mother in your article, we also despaired over the total lack of specialist services for ME sufferers in Northern Ireland.
However, our experience of support with the illness has been different to that expressed in your article. In contrast, never once has psychiatric help been suggested to us, which confirmed our opinion that ME is not ‘all in the mind’.
In the early days of the illness we searched long and hard for advice and help. As a result, we have been provided with some level of support for which we are very grateful. We have had domiciliary visits and telephone conversations from a local consultant, offering effective medication and advice about ‘pacing’ and general support.
Over the years, visits and practical support have been provided by an occupational therapist and a physiotherapist, both of whom have succeeded in understanding our daughter's illness and have therefore offered only appropriate advice. In addition we have had good support from our local ME Association here in Belfast.
But like the family in your article, we agree that specialist services for ME sufferers here in Northern Ireland are sadly lacking and this needs to be urgently and properly addressed.
But also we would want to commend those professionals who have offered excellent help and advice in our situation.
PAUL AND JANET McCANN
Belfast
Comments made in the letter page of the Belfast Telegraph re article below
http://www.belfasttelegraph.co.uk/opinion/letters/specialist-help-for-me-sufferers-is-lacking-13948642.html
We write referring to the Belfast Telegraph article (August 12) on a mother coping with her 15- year-old son David, who suffers from ME.
As this article highlighted only one family's experiences and views, we thought we would like to make you aware of our experience which differs considerably from the one in your article.
We are parents of a teenage daughter who has severe ME. Five years ago as we struggled to find a diagnosis, we watched our formerly active child become bed-bound, unable to hold a conversation and suffer from extreme light and sound sensitivity.
Like the mother in your article, we also despaired over the total lack of specialist services for ME sufferers in Northern Ireland.
However, our experience of support with the illness has been different to that expressed in your article. In contrast, never once has psychiatric help been suggested to us, which confirmed our opinion that ME is not ‘all in the mind’.
In the early days of the illness we searched long and hard for advice and help. As a result, we have been provided with some level of support for which we are very grateful. We have had domiciliary visits and telephone conversations from a local consultant, offering effective medication and advice about ‘pacing’ and general support.
Over the years, visits and practical support have been provided by an occupational therapist and a physiotherapist, both of whom have succeeded in understanding our daughter's illness and have therefore offered only appropriate advice. In addition we have had good support from our local ME Association here in Belfast.
But like the family in your article, we agree that specialist services for ME sufferers here in Northern Ireland are sadly lacking and this needs to be urgently and properly addressed.
But also we would want to commend those professionals who have offered excellent help and advice in our situation.
PAUL AND JANET McCANN
Belfast
Subscribe to:
Posts (Atom)
