FAQ/Help |
Calendar |
Search |
Today's Posts |
![]() |
|
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) |
Reply |
|
Thread Tools | Display Modes |
![]() |
#1 | ||
|
|||
Guest
|
I have been in touch with a Northern Ireland sufferer for a while, he asked for copies of the debate, my letter other documents and figures for UK sufferers, newspaper story and my video. On Friday he had a 45 minute meeting with his MP who at the end said he would get in touch with my MP when he returned to parliament on Monday and he was as good as his word, got an e-mail from my MP’s assistant yesterday saying he had asked for a meeting. I have replied asking that he try to get every MP he is friends with and members of the health committee to attend with the idea of forming a group big enough that the government can’t ignore them.
So if you want every member of the medical profession to be able to diagnose RSD/CRPS and know the 3 treatments which must never be used, if you want a specialist in every hospital and designated treatment centre in every county and an annual multi-million pound research centre, if you want them to use me as a guinea pig for a possible cure you have to act. If you want to ensure that should your children family or friends to get the best possible treatment, to find the 240,000 to 460,000 un/misdiagnosed in the UK you need to arrange to see your MP, some may visit you as mine did some you may need to go to but we have shown that if they see how we have to live, how it affects us and our families, when they realise that from something as simple as a twisted ankle or a sprained wrist they or their families could end up like us or worse, that there is a 66% chance they would never work again they will fight. I know that if you have to go to them it may cause a bad flare, telling them everything about the suicide attempt the inability to control emotions, the horrible way I’ve treated my wife, the stress and distress this has caused her my daughter and granddaughter is not something anyone wants to do but I went into this knowing it wasn’t for or about me but everyone of you diagnosed and undiagnosed. How much you are willing to tell them is down to you but the more you do the better chance you have of getting them to fight for us all. If you are willing to join the fight please e-mail me on RSDFighter@outlook.com and I will send you all the papers you need I will also send you a ink to a video to show them how bad this gets, it’s graphic so they will never forget how bad this gets or you can choose one of your own from YouTube. Please if we can get a group of at least 50 MP’s you can make this country the first in the World where every one knows that RSD/CRPS exists and how bad it is and that every sufferer gets the best possible treatment, but you are the only ones who can make it happen. |
||
![]() |
![]() |
#2 | ||
|
|||
Senior Member
|
Hi Kev. I hope you are doing okay. Thanks for the info. I will defintly check it out. Take care my friend.
__________________
RSD ME . |
||
![]() |
![]() |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
Any chance this is CFS/ME/Fibromyalgia? | Fibromyalgia and Chronic Fatigue | |||
Sometimes you have to take a chance | Peripheral Neuropathy | |||
A chance to be heard | Parkinson's Disease | |||
She Never Had a Chance | Pets & Wildlife | |||
Any chance? | Movement Disorders |