By Matthew Hill
People with life-threatening illnesses are being swindled out of thousands of pounds by a UK company offering them false hope, says an expert.
Stem cells hold great medical promise
Advanced Cell Therapeutics says it can treat people using stem cells taken from umbilical cords.
But stem cell expert Dr Stephen Minger told the BBC there was no way the treatments could work.
Sarah Smith finds it harder on her eyes to use the internet.
Her eyesight is getting worse because of her MS. Two years ago she learned about a company called Advanced Cell Therapeutics on the internet where she read glowing testimonies from other customers.
She was so convinced about unfounded claims that eight out of ten customers saw their conditions improve after being injected with stem cells from umbilical cords, that she paid 9,000 euros to be treated.
She had to travel to their Rotterdam clinic because such injections would not be legal in the UK.
"I had it done in June and about September time I felt that I might be getting better but in hindsight I think it was the placebo effect.
Sarah Smith opted to try the treatment
"I think if you have got the money and it's not going to have a massive change to your life to use that money then go for it, try it but I certainly would not recommend people going into debt for this."
But for Sarah - and many others we have spoken to - the treatment just did not work.
Stem cells are our bodies' remarkable own repair kit, able to develop themselves into other cells within the body.
But one of the country's leading stem cell experts, Dr Stephen Minger of King's College and Guy's Hospital, has told us there is no plausible way ACT's treatment would work.
Dr Stephen Minger said: "This is trafficking in tissues. We take tissues very seriously after Alder Hey, so the idea that this is going on and that this completely unregulated and underground therapy is going on I find disturbing.
"I like to think that people can come and regulate this on an international level."
No medical background
ACT was set up by the one of the founders of a company called Biomark in the US.
This untested treatment was the brainchild of Laura Brown, a media student and former catwalk model from North Carolina and her boyfriend, Steve Van Rooyen, a South African businessman.
Nelson Lauver was suspicious of the claims
And despite no medical background or qualifications they moved to Atlanta and set up Biomark.
They bought the stem cells from labs around North America.
Then, through a network of compliant medical professionals and clinics plus a webpage of flawed and plagiarised testimonies from real experts, they lured sufferers of illnesses like Parkinson's and multiple sclerosis into paying thousands of dollars for treatment, which some of the world's foremost scientists have described as ineffective and possibly dangerous.
Brown and Van Rooyen by this point were making hundreds and thousands of pounds from their flawed "miracle treatment".
Chat rooms and blogs were feverishly alive with the news that Biomark could be the answer to the prayers of sufferers across the US, but back in rural Pennsylvania their claims were to be challenged for the first time.
Nelson Lauver's radio show is syndicated across the US.
He is "The American Storyteller", a chronicler of tales from ordinary lives.
There was nothing ordinary about the story he had to tell, though.
Nelson's brother Craig developed an incurable deterioration of the nervous system, called ALS.
After Craig found out he had the illness, it was a familiar pattern: hours spent on the internet, hopes raised by the dozens of quack remedies on offer only for them to come crashing down when the treatment did not work.
Craig clicked onto the Biomark site to be seduced by the bold but unfounded claims and the testimonies taken out of context, as Brown and Van Rooyen intended. It was just too good to miss.
Craig was told that he to would have to fly to Canada for treatment. As it turned out, he was never well enough to do so.
Nelson persuaded someone calling herself Dr Diana Krause from Biomark to turn up at the family home.
But it was not just Craig who was waiting for them. The vase in the corner did not hold just a bunch of flowers and the radio did more than just play out Craig's favourite music.
The room was swarming with electronic bugs.
The family, suspicious of Brown, had contacted the FDA who had the room covered with secret cameras and microphones while agents lay in wait next door.
Nelson Lauver said: "The night before Dr Kraus turned up, I rang Laura Brown and said, 'Hi, I'm Craig's brother and I really want to thank you for this good work and for helping us.'
"She went on about people throwing their wheelchairs away and people who couldn't walk running up and down the steps. It was obvious that this was a scam."
Allowed to go free
The FDA had wired $10,000 from a bogus trucking company they had set up into Nelson's account to pay Biomark using the evidence they had gathered in the sting in Craig Lauver's house.
They then raided Biomark's office.
Although they seized assets of around $250,000, crucially and strangely Laura Brown was allowed to go free.
Brown's whereabouts after the FDA let her go were a mystery, not least to the FBI who in March placed both her and Van Rooyen on their wanted list, issuing a 51-count indictment against them.
Randy Chartash is the FBI's Assistant Attorney in Atlanta, at the courthouse downtown.
In the first interview the FBI have done about Biomark, Mr Chartash told me just how serious these charges against Brown and Van Rooyen are, with the couple facing a very long jail sentence if found guilty.
"The indictment alleges that they made misrepresentations to people about the effectiveness of the stem cell therapy they were offering.
"This type of fraud is especially harmful as it victimises people in the most vulnerable situations and individuals who are suffering or have loved ones who are suffering from an incurable disease.
"They were preying on people at their most vulnerable point."
It is many months since they were last seen at their apartment, but we have tracked Stephen Van Rooyen down to where he now lives in his native South Africa.
Randy Chartash is very concerned
His spacious house perches on top of dramatic cliffs, overlooking the idyllic white sanded beach. This is the area of Cape Town where the beautiful people live.
Van Rooyen has never responded to our letters or emails and no one answered when we knocked on the door.
Like the FBI, we also want to talk to Laura Brown.
She has failed to respond to any of our approaches and we have good reason to think she may be in Pakistan. As a consequence of the FDA letting her slip through their fingers, she was free to set up her fraudulent scheme again, which alarmingly she did here in the UK.
But their brand of untested treatment is still being peddled through a London clinic for ACT which sends customers abroad for treatment.
Sarah Smith received her treatment from one doctor, Robert Trossell.
"With all new developments in medicine there are always new groups who are not used to the new concept and they cry like this is impossible.
"They said this of penicillin, insulin and life cell therapy. In the meantime everyone is studying stem cells because everyone knows it is the future."
The Dutch authorities have told us they are investigating the legality of ACT's clinic.
Another centre in Cork is also being investigated by the Irish Medicine Board.
One customer we have spoken to who claims real benefit from the treatment is Jan Wilks from Liverpool.
The 45-year-old MS sufferer claims her condition has improved and she is now able to get about the house without the wheelchair she has relied on.
Scientists are convinced stem cells will eventually be a treatment for previously incurable diseases. Indeed a proper clinical trial on MS patients begins very soon in Canada.
But anything like a miracle advance is, they say, still many years away.
The Stem Cell Swindle will be broadcast on Tuesday, 16 May, 2006 at 8pm on BBC Radio 4.