Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-14-2014, 06:58 AM #1
Kevscar
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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.
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Old 03-14-2014, 07:00 AM #2
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To Andy Burnham Shadow Secretary of State for Health. If you live in the UK please take what you want from this and e-mail your MP asking them to call for Norman Lamb's sacking and action to be taken as he promised.

13/3/2014
Dear Sir
I have been informed by Andrew Pakes that he has sent you 2 documents and a covering letter.
I was first told that Mr Pakes would be asked to contact me over the Worlds Most Painful Incurable condition in May 2011. On further 5 or 6 occasions before this year I was again told he would be asked to contact me including by Councillors Steve Coventry and Hannah O’Neill. Finally he announced he was holding a meeting on 25th Jan this year, despite the fact that I had only left my house on 8 occasions in 2013 I decided to attend only to be told that he was too ill to come when I arrived. I spent half an hour with his assistant explaining the 2 documents and saying that along with another letter I could supply if requested which proved the previous Health Minister had lied to Parliament on 2 Nov 2010 they could be used as a potent weapon against the government. His assistant stated he would pass them on and Mr Pakes would be in touch. On the 4th Feb I contacted Steve Coventry to say he had still not been in touch and he replied with a copy of his e-mail to Andrew Pakes asking him to contact me ASAP.
On the 18th I sent the following Hi Steve
2 weeks and nothing, You really need to talk to your chairman do you want someone like Pakes standing. First told he would contact me early 2011, 5 more times he has failed to respond. I really don’t want to go public but if that's the only way to make sure he doesn’t get elected I will.
Kevin
Surprise Surprise the very next day he sent an e-mail saying he had forwarded the stuff to you. You will understand why I cannot trust that he has done so and have attached them here. Even if he has I doubt he will have detailed how they and the other letter if you request it can in my opinion best be used to embarrass and shame the government and force Mr Lamb’s sacking. Benefit sufferers and your party.
Before I go any further I would ask that you spare 5 mins to watch the following video so you have some idea of what this does to sufferers but I need to give you 2 warnings first, you will find some of the images disturbing and secondly although in the majority of cases this starts after a fracture or surgery, a significant number occur from something as trivial as a twisted ankle or sprained wrist so you your family and friends are all at risk because studies have shown it occurs after 5% of all injuries.
http://s834.photobucket.com/user/Kev...eam-1.mp4.html
I know it sounds old-fashioned nowadays but I believe in Honour, Duty and a Man’s Word is his Bond. It should be an Honour to be a Minister in this country’s Government. If appointed as such there is a duty to carry out that position to the best of your ability for the benefit of the population and if a Health Minister then that duty is multiplied a thousand fold as you are responsible for the ill and weak. If you give your word especially in that position only severely crippling injury or death should prevent you from carrying out your promise. Not only did Mr Lamb give his word as the last sentence in the debate but he told me afterwards that if I sent in a list of suggestions he would go through it with Iain Stewart to see what could be done to help sufferers. That letter was forwarded to him by Iain mid-august and the fact that 7 months later he has not even had the decency to acknowledge its receipt makes it blatantly obvious he had no intention of keeping his words when he uttered them and is not fit to be a minister in any way shape or form.
If you were to adapt step 4 in my Letter to Mr Lamb and ambush David Cameron demanding to know why Mr Lamb failed to keep his word, pointing out that he was made aware that 25% of sufferers commit suicide He must share responsibility for an unknown number of suicides and while he might not care, that I have to live the rest of my life knowing that some people might still be alive if I hadn’t trusted him and waited so long for him to act. That because Mr Cameron gave him the job he must also share responsibility for those deaths. Why with this country in such a financial state having been given a relatively inexpensive way of reducing expenditure by a billion or more a year he has done nothing. Why knowing there maybe as any as 460,000 undiagnosed sufferers out there he has not lifted a finger to help them and demand his sacking.
I would ask that as per that step you would fund some sufferers being there in any case I would want to be there, they would need at least two week’s notice to be able to attend, for you Mr Miliband and all the other Shadow Health Ministers to meet them afterwards and to then do the press conference to enlist the media’s help in finding the undiagnosed. I have no doubt you would gain votes from a lot of those sufferers and their families who have gone un/misdiagnosed for many years, for some it will have been 20 years but there is away for you and Mr Miliband to touch millions of voters and show that you want to be the government which serves the people and is not their masters.
It would take men of honour and courage to do it and I believe would be a world first. At the Press conference you would produce and sign witnessed by 2 sufferers a legally enforceable contract drawn up by one of your barristers. It would state that within 30 days of taking office you would ensure that an e-mail is sent to every medical facility in the country about RSD/CRPS and in that time period you would meet with sufferers and Specialists to discuss the other steps in my letter. Within 90 days of taking office you will have instituted training courses for the next intake at all medicals schools and training sessions in all trusts for existing medical professions. Within 120 days you will have started on all other steps agreed to in the meeting. Should you fail to do this then you will resign from your positions and never hold high office again.
Sir what ever you decide please help my fellow sufferers; please give them hope a reason to carry on fighting.
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Old 03-14-2014, 07:01 AM #3
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Dear Professor McCabe
Iain has told me that you instigated the meeting that occurred and he has given you some of my points to consider. The first thing that needs to be done is to establish how many sufferers there are in the UK of which there are 4 possible figures.
1st based on Dr Ellis’s radio broadcast last year. She stated that 1 in 60 would develop it in their lifetimes. With a population of 63,000,000 and an average life span of 81 years that is 12 963 annually, mid way between the figures from US and Dutch studies. However she went on to state that 75% of all cases resolve spontaneously, this is not something I have come across anywhere else in the world in over 3000hrs and 4 years of research in fact exactly the opposite once you have it you have it for life no cure and even if you are lucky enough to get long term remission it can and does comeback, I have read of people who went 10 – 12 years in remission before a slight trauma caused it to come back full blown. John Hopkins is one of a large number of institutions and Doctors who have stated it spreads in 77% of all sufferers.
Let us accept for the moment that both views although diametrically opposed are right that still means 3240 new cases a year giving the UK 262440 sufferers.
From A Dutch study 371,700 from US 390,000. The figures quoted in the Royal Collage of Physicians’ paper workout to a horrifying 482,000. The only absolute figure we had was from the NHS Direct database in Oct 2010 which showed 11454 diagnosed in the UK, unfortunately they were later told to destroy those records which would be kept in future by the ONS but the ONS never received any such instruction however I was able to find out that there were approx 8600 consultations for RSD/CRPS in 2012 but no way to tell how many were for new sufferers so it is still virtually certain that only somewhere between 20 and 25,000 have been diagnosed. Hopefully you will now understand why I have been fighting so hard to get action taken and I will not stop.
I don’t know what Iain gave you so I have attached the 7 steps we are trying to get Mr Lamb to undertake, the first 6 were done in consultation with other sufferers and I hope you will take the time to go through them thoroughly as both Iain and I need to know how effective you think they would be in finding and getting the right treatment for every sufferer in the UK. You know that the best chance of remission is if the correct treatment starts within 3 months of onset yet the average time from beginning to diagnosis in America is 30 months but I have read of many UK sufferers for whom it was 10 – 20 years before being diagnosed and in 2 cases 27 and 28 years respectively. 5 months after Iain forwarded my letter to Mr Lamb I came across something which convinces me even more that step 7 could be a massive leap in the right direction. I know that you will be aware that it was Silas Weir Mitchell who first diagnosed RSD in 1847 but were you also aware that 7 years later he was the man who came up with Phantom Limb Pain. One of the first things I was taught in Police Training Academy was not to believe in coincidence, what if they are one and the same condition.
I know that you do a lot of work on this matter but I need and hope you will be willing to do more. What it needs is for you and as many other Doctors as possible to go public, TV Radio and press interviews, on how bad and how many people this may affect and how little is known. If you think my steps would make a serious dent in this problem, I don’t really want my name mentioned but detail them, demand to know why MR Lamb has known about them since Aug 2013 and done absolutely nothing despite promising he would, if any of you think it’s appropriate call for his sacking, contact your MP’s demand answers. Ask your patients to do the same.
But I need even more from you, we need a standard treatment protocol in place that is easily accessible by every medical professional , everything I have read leads me to believe that Pain Medication must be first. Ice, Hot and Cold Water Contrast Therapy and Aggressive Physiotherapy must never be used. I am told the last is even stated in the American Journal of Medicine and I have read of 2 UK sufferers whose circulation was so badly damaged by Ice that they developed gangrene and had to have amputations to save their lives. I have permanently restricted blood flow because of contrast therapy 3 times a day for 7 weeks. Gentle but Intensive therapy stopping as soon as the patients indicates rising pain level daily for a minimum of 6 weeks but possibly longer, your mirror box therapy, gentle massage desensitization exercises and everything else you think that could be done in a unit to help get remission. a set of gentle exercises to be carried out 3 -4 hourly at home, you would need to decide which ones because 2 of the ones I was told to do were just not possible. These 2 links which I have given to a number of sufferers and they all said helped.
http://www.openfocustraining.co.uk/exercise.html
http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf
and anything else you feel necessary.
Both of the above really need doing as soon as possible so that hopefully we can see action happen within the next 4 – 6 months.
The other thing I would request that you do is not so urgent and more complicated, when we find the un/misdiagnosed we need safe places to treat them. I would ask that you come up with 3 plans for treatment centres/units in existing building/wards.
1. Unrestricted money, I know we would never get that but it might persuade them to go for option 2 rather than 3.
2. Ideal
3. Bare Minimum
Each plan would need to detail Mon to Fri opening or 24/7 for No1. Number of inpatient Beds, number of outpatients appointments per week. Staffing levels and specialties required. Equipment that is essential purchase and equipment that could be hired in on an as needed basis if this is better financially. Office staff, equipment and computers. Any facilities that the unit would need to be near for patient treatment such as warm pool for hydrotherapy. Really anything you can thing of that would give the best results for sufferers.
After your 2012 meeting I had outrageous allegations made by the organisers and a week later got a letter from Prince Charles saying he was too busy to help raise awareness, I made a promise to my self then that no matter what I would fight for sufferers to my last breath and no matter what you decide I will but I know that with only a few sufferers and Iain helping me there is no chance of a cure in my lifetime and probably the lifetime of everybody alive today and I will die knowing I have failed them all. With your help the help of all the doctors you know nationwide, if you all can inspire and motivate your patients to speak out, to e-mail their MP’s and MEP’s we can force those steps through the government, then I truly believe that within 1 or 2 years we can find every sufferer in the UK and every medical professional will be able to diagnose RSD/CRPS and know who to refer patients to. Within 5 – 10 years there will be a dedicated specialist led treatment centre in every county, and with a internationally recognised data hub and a reasonable annual research fund there is a possibility that you might find a cure before I die.
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