Are these people wrong?
PM reporter Yvonne Murray writes:
"This is Katrina Washby and her husband Vic, a former firefighter, who suffers from motor neurone disease. In 2005, they raised £12,000 to pay for stem cell treatment at a clinic in China. Vic says he noticed some improvement when he returned, although his condition has since deteriorated.
Doctors in the UK are concered that more and more people who suffer from degenerative and neurological conditions are travelling abroad for stem cell therapy. They say these treatments are unregulated, unproven and potentially harmful. Patient support organisations believe many of these clinics are just cashing in and taking advantage of people in a vulnerable position.
But Vic and Katrina believe that anything that offers even the remotest hope, is worth the risk and the money."
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I'm sure they aren't wrong.
I think anyone who has the misfortune to suffer from ALS would try anything offered, I certainly would.
I happen to know a litttle about this disease as I recently lost an ex-colleague. I know he tried everything.
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"...But Vic and Katrina believe that anything that offers even the remotest hope, is worth the risk and the money."
An opinion most of us can understand and, sympathise with.
But, unfortunately, such patients and their families are, in the worst possible way, rolling-the-dice.
A very, very, dangerous situation indeed...
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I think they are right - they are doing what is right for them.
How many of us faced with a situation like that wouldn't do what we could to try to make the situation better? Of course it is a concern that these treatments are not 'approved' by the medical community here - but in my experience, there are many things that could help that are not sanctioned officially - drugs that are used routinely in the US for example, but the UK deems not helpful.
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Not wrong, just desperate. If a treatment came up that appeared to have even limited validity, you'd give it a shot. Just waiting, inactive, for a fully authenticated treatment to be developed must be intolerable.
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Sadly, my Mum died of MND last August, only 8 months after diagnosis. A bright, active person who had nursed my father through cancer many years ago, the frustration for her was the lack of treatment or possible cause. If there is something to try it gives hope, you feel you are trying to survive for yourself AND your family. For those with long term, degenerative conditions such as MND, the hope is what can be missing and waiting for a breakthrough is not always an option, as my Mum found out! Anything is better than nothing - who wants to sit back and deteriorate with no possibilty of remission? At least as a guinea-pig, a sufferer can feel there's a possible result and they are, at least, helping others in the future. Trials need to go ahead, to give some hope back.
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In the Bible, Paul tells us the only thing any of us has, is hope.
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A few years ago I paid for and accompanied my brother and his carer on a trip to Ireland to get stem cell treatment. My brother was suffering from primary progressive MS for which there is no cure, and he has since sadly died.
At the time of the treatment I was of the opinion that it was a complete scam, an opinion swiftly confirmed by what I saw and encountered during the trip. However, the cost (~£15k)was affordable to me and it gave my brother some hope, albeit fairly short-lived.
While I can understand that people in a similar position will inevitably grasp at straws, it makes me very angry that others are making a killing from this, and taking money on completely fraudulent grounds from those who can ill-afford it. Many people pay for this treatment with the help of major fund-raising efforts in the local community,friends ,taking out loans etc, all for quackery of a high order. Taking a dispassionate view(is that really possible though?), such money would be better spent providing additional care and comfort for the afflicted and their dependents, rather than lining the pockets of thieves and fraudsters.
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Could someone explain to me what happens in stem cell treatment and why it does not work?
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Of course it's worth the risk and money is nothing next to your health.
Shame on anyone who says they are doing wrong.
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I don't think they're wrong.
Hopefully they did their research and decided that it was worth trying, rather than just taking a punt.
Any medical treatment is an experiment, even the treatments that are approved by the great and the good since you never really know how it's going to turn out until you've done it. There may be side effects or things may just not work because your genetics mean that you metabolise a drug differently to most people.
The only possible reason for not allowing it is if it stops people from participating in randomised trials (because in those, people don't know if they're getting the treatment or not). However, since there doesn't seem to be anything on the horizon in this case, that doesn't seem to apply.
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The was a story of a lady from Crawley who collected money for herself to go to Amsterdam and get stem cell treatment, £15,000 if I remember and the clinic over there was close down because it was a con.
Still would though.........
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Utter foolishness. Utter, utter, foolishness.
Does anyone have any memory?
If things go terribly, horribly wrong. As they recently have..?
Who then, will be asked to try and save the patient..?
http://www.news-medical.net/?id=44237
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well not you Mr Reaper, your track record with the sick aint so good.
As for giving things a go, how can anyone make a judgement untill they are faced with a similar situation?
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I lost my wife who had MND in 2005 after suffering for two years, when stem cell information was scant. The decision to use any treatment should be with the individual however its the 24/7 care which should be of high quality given by the primary care trust/GP but social services as well. MND association at best gives inital help but leaves a lot to the family to sort out. We found the bereavement counselling poor especaiily for my two teenage daughters. Personally I would not take anyone in this condition away from the home they lived in as its the memories and familiarity which helps them survive this horrible disease.
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Wrong in which sense? Please clarify.
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I'm sure if I was in their position I would want to at least try something if myself or partner had this terrible disease.
The problem with stem cell therapy in particular is that it does look likely to provide a treatment for some diseases at some point in the future and the chance of getting onto any sort of research project in our well regulated country is so low.
Unless we allowed more risky trials at much earlier stages of development of treatments in this country people will always risk going elsewhere to take the risk.
My heart goes out to anyone with this truly awful condition.
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