Let’s Do It For ME! Campaign For Research Centre
Hello! I’m in Norwich to talk about something good! And which you can get involved in! “Let’s Do It For ME” is pushing towards having a brand new national centre of excellence, for the best quality medical research into ME; for the assessment, diagnosis and treatment of patients; and for training and information for doctors and other health workers. The campaign has been set up by people with ME, supporting this vision that is being led by the UK charity “Invest in ME”, – to raise awareness and get people behind it, and raise essential funds to get it off the ground.
You might already know something about ME – that’s Myalgic Encephalomyelitis – and which has often been referred to as Chronic Fatigue Syndrome. Or you might know someone who has it. It is a complicated and serious, long term, neurological illness, which affects not just the nervous system, but also the immune system, hormones, muscles, heart and circulation, and more.
Around a quarter of a million people in the UK have ME or Chronic Fatigue Syndrome – with extreme exhaustion and sickness after any activity or exertion, severe problems with thinking and concentration, with sleep, pain, over-sensitivity, dizziness, poor temperature control, and literally dozens of other symptoms. Tens of thousands of people are housebound or even bed bound, not able to work, or even do any normal day to day activities. More than half of all long-term absence from school due to illness, is because of ME. You can find out more about ME in my other videos.
There have been thousands of scientific research papers published worldwide, showing the wide range of physiological effects of ME – but the actual cause and mechanisms of the illness are still not really understood – and there is no cure yet. And so far in this country, there has been shockingly little biomedical research into this horrendously disabling disease. Without better understanding, services for people with ME in this country at the moment are often poor. Without early diagnosis, or by being given wrong advice or treatments, the illness can develop into more severe forms – and other patients are probably being mis-diagnosed with ME when they may be suffering from other illnesses that could potentially already be treatable.
This is why it is so important, that Invest in ME are working hard towards the exciting goal of setting up a national Centre of Excellence for Biomedical ME Research, with patient care at its heart. It is set to be based in the wonderful city of Norwich, at the highly regarded University of East Anglia and the Norfolk and Norwich University Hospital, – working in collaboration with international researchers. The aim is to carry out the highest quality advanced research, and translate that into getting the right assessment and accurate early diagnosis of patients with ME and Chronic Fatigue Syndrome, leading towards giving them appropriate treatments. Up to date training and information will also be available for doctors and other healthcare professionals.
The initial target for “Let’s Do It For ME” is to raise £100,000, to fund a research project here, looking at genome sequencing, and the possible link between ME and gut disease. This would also give a solid foundation for future research. All money raised through this campaign will go directly to this research and the proposed centre. The charity “Invest in ME” was created in 2005 by volunteers who are parents of children with ME or sufferers of ME, it is a founding member of The European ME Alliance, and it has no salaried staff. You can find out more at investinme.org
So how can you help? There are two things – awareness, and fundraising. Firstly, please tell everyone you know about these exciting plans for this much needed research and treatment centre for ME. We can all come together to let people know that we do want and need this! All the information about the campaign is on the website letsdoitforme.blogspot.com . You can also follow on Twitter and Facebook, and share the links with your friends.
If you are able to make a donation, of any size, you can do that simply through the Let’s Do It For ME website please, or send a cheque to Invest in ME, or you can set up a monthly payment, via Paypal or direct debit. Let’s Do It For ME also has an online shop, with lots of great things that will help to raise awareness and raise money. You can set up your own fundraising event in your community! And a really easy way to help every time you shop online or search the web, without costing you a penny, is Everyclick.com. Sign up, and select to support “Let’s Do It For ME – Fundraising 4 ME”, and whenever you shop online, – either go through the Everyclick website, or install the simple “Give as you live” app, and the campaign will receive a percentage from each transaction – at absolutely no extra cost to you!
So, tell everyone you know about these excellent plans for the ME research and treatment centre… And let’s make it happen! Invest in ME! Let’s do it for ME!
Full details at http://letsdoitforme.blogspot.com
and follow http://twitter.com/Letsdoit4ME
Supporting UK charity http://www.investinme.org
Raise money easily through http://everyclick.com and support: Let’s Do It For ME
