ME Treatment is a National Scandal | |||
Anyone wishing to can forward a petition to their MP - copy the petition letter at the site below. http://sophiaandme.org.uk/petitionmp... |
Thursday, 15 January 2009
ME Treatment is a National Scandal
Saturday, 10 January 2009
X Factor Tickets
2 X Factor Tickets up for Auction for Wednesday 18th March 2009.
Email me if interested, Money raised will help raise awareness into ME.
Email me if interested, Money raised will help raise awareness into ME.
Tuesday, 6 January 2009
ME Fundraiser in the Felons on Friday 17th October 2008,
ME Fundraiser in the Felons on Friday 17th October 2008,
Can I once again thank all who attended our ME Fundraiser in the Felons on Friday 17th October 2008, especially the sufferers who attended I know how difficult that was for you. Some people with ME can look quite well to the outsider, but if you look closer you will have seen signs of their illness, the steady decline in their appearance as the night progressed. You would have seen the colour literally drain from them as their energy levels dropped and in conversation would have noticed their loss of concentration and or ability to keep track of the conversation. In order for Bernie, Una and Alison to attend our fundraiser they will have had to pace themselves both physically and mentally for weeks or months prior to the event. Afterwards they would have to deal with an increase in their symptoms including muscle and joint paint and debilitating fatigue which will most likely end up with them being bedridden for sometime afterwards. Yet they came, but at a cost to their own health and wellbeing and we applaud them for their continued courage in dealing with this awful illness.Thanks to the Felons for letting us have use of their premises and covering the cost of our disco.
Thanks again for all those who donated gifts for our ballots and auction, Maire Therese, Joanne (Zest), Colleen (Sunkissed), Joe (Party Solutions) Fancy Fayre, Dougie (Orchardville).
A special thank you to the young ones who give up their time to entertain us, Shona Cosgrove, Paula Mc Manus and Boys in the Corner. Thank you to Colin Welsh who did our disco and donated his wage to our campaign.
Thank you also to our Lord Mayor Tom Hartley who took time to attend and speak at our function, hopefully a few more people will be educated into the disabling effects of ME, and hopefully we will have brought ME into the public consciousness.
Thank you to Paul Mc Cusker of Feile FM for his continuous support in helping me raise awareness into the debilitating illness ME
In 2009, familyfights4me will be supporting 2 ME sufferers in their campaign against the NICE guidelines for ME. This is to take place at the High Court in London on 11th-12th February 2009. NICE are advocating CBT and GET as the primary intervention for ME and there is no credible evidence to support the claim that these treatments are effective This is akin to telling cancer sufferers that if they would only change the way they think about their illness, they will improve and despite reports from a huge number of sufferers who feel that GET made them worse. CBT/GET cannot correct the damage that has been shown to occur in the central and autonomic nervous system, the cardiovascular system, the immune system, the endocrine system and the gastro-intestinal system of those with ME/CFS. The most recent UK death from ME/CFS occurred in May 2008 when a severely affected woman died in the North of England; her death certificate gives "Myalgic Encephalomyelitis" as the cause of death.
To date in Belfast we have now raised just over £16,000 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 governments 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, and the 250,00 sufferers in the UK.
Many Thanks again to all who attended and donated to our fundraiser.
Antoinette & Paul Christie/ Jeanette Marley
Familyfightsforme.
Monday, 5 January 2009
G4 Star suffers from ME? - Daily Mail article
To read article - click on link below http://www.dailymail.co.uk/health/ar... |
ME Help - Article in Andersonstown News
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ME help MOST help lines and chat lines are only open during office hours on weekdays and closed at weekends and on public holidays, including Christmas and New Year, when people want and need them most. Now M.E. Free For All. org can offer a global round-the-clock, 365 days a year, service, thanks to the invention of Skype (rhymes with "pipe")! Skype is a relatively new technology, which allows a broadband user to talk from one computer to any other computer, anywhere in the world, free of charge. There are some extra services that can be bought from Skype but the basic service, which we use, is free. For those who don't already have Skype, we have full details of how to get it on our website but it really is as easy as 1-2-3. Ready? 1. Go to www.skype.com and click the big green "download" button, 2. Follow the instructions to create your Skype account and choose your Skype name, 3. Start building your Skype contacts. It is fairly straight forward for even the most terrified technophobe but if you do get stuck and don't have anyone to help you, you can e-mail John at drjohngreensmith@mefreeforall.org and we'll get you started. If you want to speak to somebody, you will need a microphone, which you can buy online or a an electrical shop but it is still worth downloading since, even if you do not have a microphone, you can send in stant messages straight away. Once you get connected, you will be able to talk about anything at all, including this awful illness, M.E. (Myalgic Encephalomyelitis) and any other problems, like benefits, with any of us, who have similar experiences. You can also add any friends or family you already have and we can add more new ones to your growing list. As you get more experienced and confident, you can add other features, such as three-or four-way conversations, play games and you can add a web cam if you want the person you're calling to see you, or turn it off if you prefer. Our SkypeMEFree service is to complement our M.E. Christmas blog and Christmas M.E. constituencies forum, where you can have some good, light-hearted exchanges with others on any subject apart from M.E., and where you may meet some new friends who, perhaps you didn't know, live only a few streets away. You can also ask for help with such things as a lift to the doctor's, shopping, housework or gardening. Yours sincerely, Dr John H Greensmith |
Judicial Review of the NICE Guidelines
Please watch the video below
http://uk.youtube.com/watch?v=uojoJ07OktE
http://uk.youtube.com/watch?v=uojoJ07OktE
Anyone requiring further information can go to the website below website: http://www.nicemecourt.co.uk/ |
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