This Is MS Multiple Sclerosis Community: Knowledge & Support

For the last 18 months the British press was full of stories about MS sufferers who had stem cell treatment in Holland and had seen miraculous recoveries. Now all the stories are about the same people who no longer see any benefit!

Ian

'Miracle' MS cure dismissed

A young multiple-sclerosis patient who walked for the first time in five years following expensive stem-cell replacement therapy has warned fellow MSers not to waste their money on it.

Amanda Bryson, 20, began walking again minutes after receiving the treatment in November 2005.

But her condition has since deteriorated so much she is now as immobile as before the treatment and is confined to a wheelchair. Her warning comes after experts told patients to beware of such "miracle cures".

She said she felt guilty for having given fellow MS patients hope the treatment could be a wonder cure for conditions such as multiple sclerosis, as the therapy, which is not licensed in the UK, can cost up to £15,000 from clinics in other parts of Europe. Ms Bryson, from Inverness, said she had even heard of people remortgaging their homes to raise enough money to pay for the treatment.

She said: "For the first month or two I was absolutely fine, but now things are the way they were before. I have secondary progressive multiple sclerosis and I am back where I was before the treatment. In my opinion it is a big scam."

Ms Bryson's family raised about £12,000 for the treatment at the private PMC clinic in Rotterdam, the Netherlands. She said she felt bad for families who had made huge sacrifices for the treatment.

"It is an expensive scam. I feel really bad for getting other people's hopes up," she said.

She went on: "It could be a placebo effect that makes people feel better because they want to believe it will work. It is a short-term effect. To me it seems cruel. I gave it a go,

"I thought it had worked but it didn't. The effects wore off months ago."

Ms Bryson was believed to be the first Scot to have benefited from the controversial treatment. Shortly after receiving the therapy last year, she said: "I am now able to walk again. For over a year I could only get about in my wheelchair, so it is amazing the difference in just a matter of days.

"It sounds shocking, but I could feel the difference after just five minutes. Since the treatment I have been transformed. I am doing things I couldn't do a year ago. Hopefully, I will be fully recovered in a year."

Ms Bryson was struck down by the muscle-wasting disease at the age of 14.

Source: The Scotsman ©2006 Scotsman.com

It would be interesting to know if the treatment failed, either 1) because it was only placebo, or 2) because the stem cells had a short life and were not renewed?

On the subject of placebo, I saw somewhere that placebo is statistically likely to occur in 33%* of cases. If the short-term level of improvement of SCT patients at the centre exceeded a third, then 2) may have been a reason for failure.

* I think someone (maybe on this site) drew an interesting link between the success expectancy from placebo (33%) and that from the CRABS and other MS treatments which seem to have been about the same.

Phil.