Whether you can make it to Parliment or not next Tuesday please help by copying and e-mailing this to your Local paper, TV and Rado Station and if you are willing tell them that you are happy to give an interview.


Subject Line: Parliament to debate the 'Suicide Disease' on 9th July 2013 4.30pm Westminster Hall

It is known as because surveys show that sufferers are 900% more likely to commit suicide than any other known group. Shockingly, according to information from one US Professor and sufferer, in the long term 25% of CRPS sufferers do take their own life.

It is known to some in the UK as FIIKS, F’ed if I know Syndrome because there is widespread ignorance of the condition amongst GPs and other primary care physicians, and despite the numbers from a Royal College of Physicians paper in May 2012 showing that there could be as many as 480,000 suffers in the UK, less than 20,000 have been diagnosed. That is an awful lot of undiagnosed sufferers trying to cope with what is recognised as the most painful condition in the world.

The Pain of this condition is so great that there are recorded cases of sufferers self-amputating in a desperate attempt to escape the excruciating agony, others have had their circulation so badly damaged that they have developed gangrene and have had to have amputations to save their lives, in either case it has caused the condition to spread further into their bodies.

The medical term for the illness is Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy is its previous name, still commonly used, particularly in the US). According to the universally accepted McGill Pain Index, it is the world's most painful condition and, as you can see from the attached list of symptoms, there is so much more to it than the pain. There are no known drugs or combination of drugs that can do more than give some temporary pain relief, and even these do not work on all patients. The condition spreads in 77% of sufferers, and this can be caused by the slightest knock or bump. One sufferer's spread from below their wrist up to the elbow was caused by the use of a sensitivity pin 4 inches outside the initially affected area. In 10% of sufferers the condition ultimately affects the full body - all 4 limbs, neck, head, eyes, mouth and internal organs. For 7-8% the immune system is affected so badly that wounds may never heal, and the kind of injuries that could put a normal person in A&E for a few hours and result in 40 stitches could prove fatal. A poorly executed blood test can cause spread of the illness to the needle site, yet A&E departments are largely unaware of CRPS and how to deal with anyone who has it.

The experience of most sufferers is that 95% of the medical profession have never heard of CRPS. For many it has taken 10-20 years to get the correct diagnosis, and one woman from Northampton spent 27years suffering before finally being diagnosed. Many medical professionals have inferred that these sufferers are malingers or drug seekers, or are told that it is all in their heads. Half of the annual UK suicide figures could be because of this condition, but as nobody knows what is wrong with the individual, the cause is documented as depression or some other mental illness. A common misconception is that CRPS is a psychological problem, and that the pain is not real. In fact CRPS is a recognised physical condition with physical symptoms that can be seen, felt, and documented. It causes changes to the sufferer's brain that result in changes to pain sensation, tissue degeneration, skin changes, and temperature differences in the affected areas. Almost any other body system can be affected too, including the stomach and intestines, the heart and lungs, bladder, liver and kidneys.

Those with CRPS know a level of pain that most people are lucky enough never to know. This is not the pain of a bad back or a migraine, it is worse than childbirth or the amputation of a finger, and it is there every minute of every day. The common psychological problems of CRPS sufferers, like depression, anxiety and suicidal thoughts, are caused by the condition itself. For most people, pain is a distressing but temporary symptom following an injury, for us it is a burden we carry every moment of our lives, and it affects every area of that life - work, home life, relationships, sport, hobbies, social life and friendships.

Despite this being debated in the House of Commons on 14th June 2006 (http://www.theyworkforyou.com/whall/...yndrome#g301.0) not one Health Minister then or since has lifted a finger to help, and as far as can be ascertained the NHS has not received a single penny in funding for CRPS research. Incredibly, the last research done in Bath was funded by RSDSA, an American charity, and that research was not looking at treating or finding a cure for this condition.

Since the start of Modern Clinical trials there have been a total of 39,031 trials worldwide to find a cure for cancer, of which 2,292 were carried out in the UK. When it comes to CRPS/RSD the numbers are hugely different: only 76 trials have been done worldwide. Holland (population 16.5 million) have done 3 trials, Switzerland (population 8million) 2 trials, Austria (population 8.5 million) 1 trial, Israel (population 8 million) 3 trials. The United Kingdom has a population of 63.2 million, and has carried out 0 trials.

In the last 4 years the NHS has spent £375,864,222 on researching a cure for cancer (not including the cost of research infrastructure and systems). The spend on a cure for CRPS is £0. According to the Charities Commission there are 976 Cancer Charities; for CRPS/RSD the number is 0. Cancer is a terrible illness, but has widespread public awareness, and every NHS member knows of it; there is widespread compassion and understanding for sufferers, and medical research is constantly ongoing. CRPS and its sufferers have no such support.

The latest fight to get action started on 31st October 2010 with an e-mail to David Cameron and Nick Clegg, which was totally ignored. When contacted, The Department of Health refused to help in any way, stating that it was down to local healthcare organisations to decide, but failing to explain how they should deal with a condition that they had never heard of. All they were asked for to educate and research the condition was just over £3 million a year - less than 0.003% of the annual NHS budget.

Iain Stewart, MP for Milton Keynes, took up the fight in early 2012, but still the Department of Health has refused to do anything - even when one of his constituents offered to pay the cost for one of their employees to send an e-mail to every trust, hospital, surgery and clinic in the country telling them about RSD/CRPS, the symptoms which would allow doctors and nurses to diagnose it, and the 3 treatments which must never be used on anyone with the condition, they refused.

In order to try and get some action taken, Iain Stewart called for a debate on CRPS in the House of Commons, and this will at last take place on Tuesday 9th July 2013 at 4.30 pm.
You of the press can do much more than parliament to educate the public and the NHS, and we would like you to help us find the many mis/undiagnosed sufferers in this country and perhaps even prevent some of them from taking their own lives. Please print or broadcast this information, listen to and perhaps print the stories of some of those living with this condition, and investigate why CRPS sufferers are being turned away by their own government and NHS. By putting this information on your websites with a list of the symptoms, asking those who have them to contact RSDFighter@Hotmail.co.uk we can find out how many sufferers there are in the UK and put pressure on the DoH that they cannot ignore so easily.

Please take the time to watch these videos so that you can have some understanding of what our lives are like, but please be warned - some of the pictures are extremely upsetting.
http://www.youtube.com/watch?v=MviVcjWZDts
https://www.youtube.com/watch?v=sNfr903R4Jc

After finishing it yesterday I sent it to two papers, my MP (who is backing Iain) and the local news and radio folk. Such a shame I'm away next week though! Sod's Law eh....

Bram.

So far I've sent it to

ITN Sky BBC Channels 4 & 5 newsdesks and these newspapers
Daily Telegraph
Sunday Telegraph
Finacial Times
Sunday Times
The Guardian
The Obsrever
The Independant
The Times
Daily Mail
Sunday Mail
Daily Express
Sunday Express
Scottish Sunday Express
The Sun
Daily Mirror
Daily Star
Can I have your e-mail address so I can pass it on to anyone whose willing to come and interview you

Wow, that's quite a list!

I sent you my email in the last PM

What a great item Keyscar!
I've emailed it to several friends, and mentioned they should print it out (we all should ) to hand out!
It's short, concise, and to the point!
Even though I'm in the US, it's still relative!

Thanks much!


Pete


asb

Brambledog should get the Kudos. I came up with the paragraphs but she put the Polish on it

You both rule! Good for you!! Your efforts are inspiring. I am a film producer by trade and I am going to make something about CRPS. Be it a docu, or a PSA, it's coming. I am trying to get my life to a place that I can devote the energy it will take. It's a story that needs to be told. Or should I say, must be told. I am a professional story teller, so it's in my DNA. There was a time in my life when I worked crazy hours trying to do the impossible with my work. How I wish I could move at that speed now. The film would have already been complete! More of us need to be doing what you two are doing. CRPS NEEDS a voice / face. Silent no more!!

BTW Kev, I shared your FIIKS acronym with my cousin today. I think it's right on. Made her smile.

don't know if this would help but be warned it's XXXX rated http://www.youtube.com/watch?v=MviVcjWZDts