MS woman in stem cell therapy hope

The 66-year-old has not been able to walk for a decade and lost the use of her arms within the past year - leaving her unable to feed, wash or dress herself. After being told there is nothing more her British doctors can do for her, except to help ease her pain, Patricia decided to take a huge gamble with her health. Along with her husband, Michael, she has taken a loan of more than £12,000 to go to the Netherlands to be injected with stem cells - the subject of much controversy - and a procedure that is unlicensed in the UK. The couple, from Hythe near Southampton, live on benefits and despite help from family, friends and businesses over the past few months, there is still a lot to pay back.

As Patricia waits in a hotel room the night before her treatment at the private Preventative Medicine Clinic (PMC) in Rotterdam, she explains how her MS controls her body. "I can't read a newspaper unless somebody's turning the pages for me. "I can't eat - somebody has to feed me. I can't even cuddle the grandchildren, which comes quite hard as you can imagine." She adds: "I have spoken to people who have had this treatment that have improved even slightly. And even if I can get the use of my hands and arms back, it would make life much easier."

It is agreed in conventional medical circles that stem cells have the potential to evolve into other cells - and they could be used in the future to treat diseases - a potential repair kit for the human body. The Department of Health acknowledges that stem cells have the potential to revolutionise healthcare in the future and is investing £100m in stem cell research over the next two years.

But it urges caution against seeking treatment or procedures that have not been subjected to rigorous clinical trials. It told the BBC News website: "Much stem cell research is still in its infancy, and there is a long way to go before treatments are developed, but it has the potential to revolutionise medicine in this century in the way that antibiotics did in the last." The Dutch clinic where Patricia will have her treatment is the subject of much controversy because it offers the procedure to patients as an experimental therapy.

They do not use embryonic stem cells - the subject of much ethical debate - but umbilical cord blood stem cells, which they say is taken from full-term babies with the parents' consent. Doctors at PMC claim cord blood stem cells can help repair and regenerate nerve damage caused by MS. They say they have an 80% success rate at achieving some noticeable improvements in their patients' various conditions and claim they have never seen harmful side effects. But they are being investigated by the Dutch Ministry of Health, Welfare and Sport after top neurologists in the Netherlands complained about their work. The allegations include accusing the clinic of not having submitted proposals to carry out clinical trials to any research ethics committee in the Netherlands.

There is also controversy over how the cord blood stem cells are supplied. A Swiss company, Advanced Cell Therapeutics (ACT) based in Zurich, harvests them for PMC and almost a dozen other clinics around the world.

British stem cell scientists such as Professor Neil Scolding of Bristol's Frenchay Hospital, who carries out research for the MS Society, says ACT "refuses to give any scientific details of how they prepare the cells". "Various attempts have been made to ask them". BBC News approached ACT seeking information about their procedures, but it failed to respond despite saying it would. Besides this, there is doubt over whether stem cells can help MS sufferers at all.

Professor Robin Lovell-Badge, a stem cell scientist at the National Institute for Medical Research, told BBC News: "I've been racking my brains trying to think how this sort of treatment could work. "Because as far as I'm aware there is no sound scientific reason to propose that it would have any beneficial effect on MS." All this is causing a huge storm in the medical world, but for Patricia the treatment offers some hope and she is prepared to take the risk. Patricia arrives at PMC in Rotterdam, where she finds the staff are friendly and welcoming. She has spent two days in the city of Eindhoven having optional pre-treatments, which the clinic says will help detoxify her body. For the first hour she is given a drip of Mannitol solution, which PMC says will "prepare the nervous system for taking up the stem cells".

She then has about one million cord blood stem cells passed into her body via the drip and a series of injections into her neck, back and navel, while she remains in her wheelchair. Anneke Matthijssen, the doctor administering the cells, says: "Afterwards you can say it was wrong, it was this or it was that, but at this moment it's our purpose to give people a chance who have no chance at all."

The treatment is all over after four hours. And after three exhausting days in The Netherlands, Patricia is ready to go home. On the way back to the airport, she is astounded by what happens next. As she sits in the taxi, she moves her neck to the side, "which I couldn't do before", she said. She also lifts her arms up slightly, something she says she was also previously unable to do. The sudden change is a lot for her family to take in. Her son-in-law Kevin Wade, who has accompanied her on the trip, is close to tears. "It is absolutely unbelievable. Look, it's not even an hour since the stem cells went in," he says.

Whatever has or has not caused the change - it has given Patricia new hope and she has been told by the clinic it may take three months before the real benefits can be seen.

Stem cell woman has 'no regrets'

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.

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."

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