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Last Updated: Tuesday, 5 September 2006, 04:27 GMT 05:27 UK
Stem cell woman has 'no regrets'
By Anna Lindsay
BBC News, Southampton

Patricia Frost lifting her arms less than one hour after the treatment
Patricia Frost lifting her arms less than one hour after the treatment
Patricia Frost never expected a miracle.

But her crippling multiple sclerosis (MS) meant she borrowed 12,000 to go abroad for highly-controversial stem cell treatment - despite living on benefits.

Over 14 years, Patricia's MS has disabled her body and even her voice.

The 66-year-old, of Hythe, near Southampton, has been left unable to feed, wash, or dress herself.

Stem cell therapy - which is unlicensed in the UK - was "her only hope", she told the BBC News website before her treatment in the Netherlands in April.

The firm she paid is called Advanced Cell Therapeutics (ACT), based in Switzerland. It supplies the stem cells and organises the treatment at several clinics around the world.

Initially I got results, and then when it stopped I was saying to my husband 'oh it's a con, it's a real con'
Patricia Frost

Mrs Frost's took place at the Preventative Medicine Clinic (PMC) in Rotterdam - and she was told it would take three to six months for the full benefits to take effect.

PMC said the procedure did not involve embryonic stem cells - the subject of much ethical debate - but umbilical cord blood stem cells, which they said were taken from full-term babies with their parents' consent.

But BBC Newsnight has uncovered evidence to suggest the stem cells ACT supplies are not intended for use in humans.

Patricia Frost being injected with stem cells at PMC
Mrs Frost took out a bank loan to fund the 12,000 treatment
The cells may contain animal protein and are allegedly for research purposes only.

The programme also revealed evidence to suggest a couple wanted by the FBI in the US on suspicion of selling false and misleading stem cell treatments, Stephen van Rooyen and Laura Brown, are behind ACT.

Controversy has surrounded the firm for months. At the time of Mrs Frost's treatment in April, British stem cell scientist Professor Neil Scolding, of Bristol's Frenchay Hospital, said ACT refused "to give any scientific details of how they prepare the cells".

At the time, BBC News also approached ACT directly - seeking information about their procedures - but it failed to respond, despite saying it would.

PMC was also - and remains - the subject of an investigation by the Dutch Ministry of Health, Welfare and Sport after top neurologists in the Netherlands complained about their work.

The clinic is accused of not having submitted proposals to any research ethics committee in the Netherlands to carry out clinical trials.

'Instant improvements'

Yet within one hour of being injected with the stem cells, Mrs Frost said she felt instant improvements.

In the taxi from the clinic to the airport she began to turn her head from side to side and lifted her arms - something she said she "couldn't do before".

Whatever did or did not cause the change, it left Mrs Frost a very happy woman.

And four months later, she said despite the allegations, she "has no regrets".

"Initially I got results, and then when it stopped I was saying to my husband 'oh it's a con, it's a real con'.

"But then thinking back there has been some improvement, even if it's very slight.

They are certainly not animal cells, nor are they designated solely for animal studies
Stephen van Rooyen's lawyers
"What movement I got still hasn't gone. And I can still turn my head round," she said.

"I did straighten my fingers a lot but I can't just lately - but of course the hot weather messes everything up."

As she slowly fed herself a biscuit she added: "So I don't regret going, I just feel sorry for the people that hoped a lot more than I did.

"But if you hadn't been you'd always be wondering whether it worked or not."

"It's a risk you take with anything."

In conventional medical circles, it is agreed stem cells have the potential to evolve into other cells and they could be used in the future as a potential repair kit for the human body.

The Department of Health acknowledges this and is investing 100m in stem cell research over the next two years.

But it has urged caution against seeking treatment or procedures that have not been subjected to rigorous clinical trials.

'No negative effects'

Since the Newsnight programme was broadcast, PMC has cancelled its ACT treatments.

Lawyers for Steven van Rooyen denied the allegations.

"The cells supplied to ACT are exclusively human umbilical cord stem cells donated free by consenting parents in the First World... they are certainly not animal cells, nor are they designated solely for animal studies," they said.

"The cells supplied by ACT have certificates of analysis from accredited laboratories to prove their type, viability and purity.

"These certificates are provided in advance of any treatment to the doctors who administer the therapy.

"No recipient of ACT's therapies has ever reported adverse or negative side effects despite administering 736 treatments for over 80 conditions (primarily neurological) over a four-year period."




SEE ALSO
Stem cell treatment warning
30 Aug 06 |  Newsnight Home
MS woman in stem cell therapy hope
05 May 06 |  Hampshire
Q&A: Stem cells
19 May 05 |  Health

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