To MEP ref Petition number 1798/2012. If you live in the EU please take whatever you want from this and e-mail your MEP

Dear Mrs Bearder

I am asking for your help not just as an MEP but also as a member of the Liberal Party. I suffer from the Worlds Most Painful Incurable condition, the pain from this is so great that there are many recorded cases of sufferers attempting or succeeding in self-amputation in a desperate bid to find relief. It is known in the US as the suicide disease because surveys have found that we are 900% more likely to take our own lives than any other group and in the long term 25% of us do.
The condition is Reflex Sympathetic Dystrophy, now known as Complex Regional Pain Syndrome and 95% of the Medical Profession Worldwide have never heard of it, Many sufferers go between 10 and 20 years before getting a correct diagnosis and I know of 2 for whom it was 27 and 28 years respectively. The only real chance of long term remission is for the correct treatment to start within 3 months of the onset but even if you are lucky enough to be diagnosed in that period it’s more than likely you will be given 1or more of the 3 worst possible treatments, I was given 2 of them.
Based on NHS Direct Figures from Oct 2010 there are around 20,000 diagnosed sufferers in this country but figures from US, Dutch and Royal College of Physician’s papers show there are between 330,000 and 460,000 un/misdiagnosed in the UK. US Studies also show that 66% of us are too disabled to ever work again costing £3.5 to 4.5 Billion every year so there could be 8 x those figures throughout the EU. Each MEP could have as many as 4900 un/misdiagnosed sufferers.
This is the only condition in the World that can start from something as trivial as a twisted ankle or sprained wrist, , which will spread in 77% of sufferers and in 10% go full body, that means it invades all 4 limbs, torso, neck, scalp, eyes mouth and internal organs. This video will show you how bad CRPS can get but be warned you will find some of the images extremely disturbing. http://s834.photobucket.com/user/Kev...eam-1.mp4.html.
Worldwide there have been a total of 42138 clinical studies for cancer of which 10514 were carried out in Europe 2518 in the UK. According to the Charities Commission there are 985 cancer charities in the UK. For CRPS the numbers are, 89, 20, 0 and 0
I petitioned the EU to help sufferers on 19/11/2012 and was told my petition had been registered 6/2/2013. on 24th July I received the attached letter saying my petition had been accepted and the EU Commission would start a preliminary investigation. I am appalled that 7 months have passed and no one has contacted me for information or papers I have found during 3000+ hours of research. In that time between 45 & 70,000 more people have developed this condition and thousands will have taken their own lives.
I request you find out why the Commission has not contacted me and if they have actually done anything and you press for immediate action.
I would also request that you inform me of how a European law is made and wether you would be willing to help. A very simple law would cost the EU Government less than £500,000 per annum to run, cost each individual state less than £10,000,000 a year but save a minimum of £1 billion possibly 2 per state, give hundreds of thousands the diagnosis and treatment they need and save lives. It would need only 4 sections
1. To create an EU department of RSD/CRPS Internet Liaison and Research staffed with sufferers who have worked in the medical profession. They would download and categorise every paper that can be found make contact with all the specialist clinics around the world asking for any papers they have produced, stating that eventually they would send out a monthly newsletter with all new information from around the world to every place that deals with CRPS. It would also be of great assistance if they could eventually get a website up with all the papers available in relevant sections and where specialists can exchange ideas and information, not only could this lead to new avenues of research but prevent exactly the same research being carried out in more than one country at a time without anybodies knowledge. To send an e-mail to every Department of Health, Hospital, Clinic, Surgery and Dentist in the EU telling them of the existence of CRPS, that it is the worlds most painful condition and the 3 treatments which must never be used. Ice, Hot and Cold Water Contrast Therapy and Aggressive Physiotherapy
2. Every member state to start teaching RSD./CRPS in every medical school from the next intake. As far as I am aware Spain is the only country that does this currently and so could supply everything needed to do this. Every member state to spend the equivalent of £1,000,000 per year in training existing medical professionals in the condition and £1,000,000 a year on training until there is a
3 Every Member state to convert at least 2 unoccupied buildings or wards every year until there is at least one dedicated treatment centre in every county or equivalent.
4 Every Member State to pay the equivalent of £1,000,000 into an EU research fund to be administered by the new dept.
If you are willing to help to get this started then I can ask for sufferers to e-mail their MEP’s requesting they support you.