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.