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Thread: 'I don't know the science behind my miracle cure - and I don't care'

  1. #1
    Senior Member KIM's Avatar
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    'I don't know the science behind my miracle cure - and I don't care'

    'I don't know the science behind my miracle cure - and I don't care'
    By Alasdair Palmer
    (Filed: 29/01/2006)

    Stem cell therapy holds the promise of being the ultimate cure for everything that can go wrong with the body. The hope is that one day, it will be possible to use stem cells to regrow and replace any diseased or failing organ. From Alzheimer's Disease to Parkinson's, from heart attacks to muscle or brain collapse - stem cells could, theoretically, be used to cure them all.

    Jan Wilks with her husband Paul
    Jan Wilks with her husband Paul at their home in Liverpool

    Achieving the holy grail of medicine in practice is, however, enormously difficult. Scientists the world over are trying to unlock the secrets of stem cells. None has so far succeeded. Hwang Woo-suk, the Korean who claimed to have taken an important first step by cloning human cells, turned out to be a fraud.

    That, however, has not stopped people from offering treatments based on the power of stem cells. Those who have had the treatments now available - and you can buy them for Alzheimer's and Parkinson's as well as multiple sclerosis (MS) - report differing degrees of success.

    The buzz around stem cell therapy for MS is the loudest and most exciting. In recent months, several people with MS reported that they had improved dramatically after being treated with an experimental stem cell therapy. Treatment for MS is something in which I have a personal interest. I was diagnosed with the disease nearly 14 years ago.

    MS is thought to be caused by the body's immune system mistakenly attacking the fatty covering of nerves in the spinal cord and destroying them. Without that covering, known as myelin, the nerves cannot transmit messages from the brain to other parts of the body effectively.

    The nerves themselves become damaged - which is what leads to progressive and irreversible paralysis which characterises the disease. The hope for treating MS is that stem cells would be able to repair and rebuild the damaged parts of the spinal cord. That would mean something which every person with MS desperately wants but cannot get: a cure.

    Jan Wilks was diagnosed with primary progressive MS in 2003. She was declining very swiftly. "I got terrible back and head aches. I couldn't walk and I had to use a wheelchair. I lost control of my bladder. Worst of all, I was losing all hope," she says.

    Her husband, Paul, tracked down ACT, the company which offers stem cell treatments for a range of conditions, including MS. ACT suggested he talk to people who had already visited the clinic. "I spoke to about 50 people as a result," Mr Wilks says. "They were nearly all very enthusiastic about the treatment, insisting that it had transformed their lives. The only person who wasn't was a Scotsman. He said the treatment was a waste of money and he wanted to sue the company."

    The couple decided to go for it. "For the first time since I was diagnosed," remembers Mrs Wilks, "I felt there was hope. You need hope to live."

    The first problem they faced was raising the money. "ACT charges around £12,000 for it," she says. "When Paul told me about it, he said, 'Well, we'll just have to remortage the house or sell it'."

    Mrs Wilks, who worked, and still works, as a checkout clerk at Asda in Liverpool, told her co-workers about what she wanted to do and how she needed £12,000. "And they were amazing. They organised a charity night for me. My boss let us put buckets for collecting money at every checkout. When I saw customers putting money in, I felt so moved and grateful I practically started crying. I thought: if you knew what that meant to me."

    With their help, Mrs Wilks and her colleagues raised the £12,000 in four months. "There was an article in the local paper: KLM, the Dutch airline, saw it, and donated seats on a flight to Amsterdam for me and Paul."

    A week before they were due to fly to Holland, they had an appointment with Mrs Wilks's regular NHS neurologist. He was sceptical of the treatment. "He told us just to be cautious. 'It's a lot of money,' he said, 'and there's not much evidence that it will work.' I said to him, 'But what are you going to do for me if I don't go?' His only reply was 'Well, there's nothing really that I can do.' That's the reason why I had to go. He had nothing. I had to try to do something. Something is better than nothing. And to be fair to him, he understood that. He wasn't against my going."

    The treatment in Rotterdam in July last year was very rapid. "You get this vial of stem cells," says Mrs Wilks, who is in her mid-forties. "They come from umbilical cords, which would otherwise be thrown away. The mothers have to give permission for them to be used. They and their babies are checked that they don't have any health problems.

    They come frozen and you have to warm them with your hand. You then get one lot of stem cells via a drip - it takes about 20 minutes - and one in an injection just under the skin. The doctor did mine in my back. The weird thing was I felt better almost immediately. My headache and back pain just went.

    "Over the past six months," Mrs Wilks says, "I have steadily improved. My bladder problems have cleared up completely. I can stand up and walk. I can play with the children. The wheelchair is now gathering mothballs. It's great!" Her right leg is still stiff, but she can walk without a stick - although she prefers to use one "for reassurance". "Compared to what she was," says her husband, "she's amazing. That right leg didn't used to be just stiff. It was dead. She was dragging it around."

    It is, of course, impossible for an outsider to judge whether the improvement has been as spectacular as the couple believe. ACT did not assess Mrs Wilks's mobility before the treatment. The company did not give her an MRI scan to assess what damage there was to her brain and spinal cord. It has not followed the case up either. "They leave you pretty much to yourself," she says. "We had a call to say we should get in touch if I had any problems but they haven't come to assess me."

    ACT has, however, offered a "top-up" stem cell treatment to Mrs Wilks. "They said the publicity they had got from my case meant they had been inundated with people who wanted the treatment, and so they wanted to give me a top-up free. I'm going to go for that in the next month. If it has an effect on further loosening up my right leg, that will be wonderful."

    Most scientists who are researching MS and stem cell treatments are doubtful about ACT's treatment. "It is not impossible that ACT have hit upon something which works," explains my doctor at the Hospital for Neurology at Queen Square, London. "But it isn't very likely, and if ACT have got something that works, it is by accident, not because of the research they have done. ACT's medical director, for instance, hasn't published any scientific papers. The fact that they do not follow up their patients sends off alarm bells. It's absolutely the most elementary step to take in any piece of scientific research: without it, you simply can't establish whether what you have done has had the effect that you aimed at. The failure to follow up patients makes it seem as if ACT's primary concern isn't their patients' health: it is collecting their money."

    Although stem cells could in principle repair damage - studies in mice have had some promising results, with the stem cells seemingly able to "home in" on the location of damaged nerve cells and reconstruct them - there are real risks. Introducing stem cells, particularly when they come not from the patients themselves, but from another source such as an umbilical cord, could have unpredictable and very unpleasant consequences.

    There is no control over the way the new cells divide. They could transform themselves into tumours - cancerous cells - with fatal results. While that is not, of course, certain, it is a theoretical possibility, one which is at least as real as the possibility that stem cells will provide a permanent cure for MS.

    No one knows whether ACT's stem cell treatment is safe and effective. That is why I personally would not pay £12,000 for the treatment - at least not yet. Many doctors in Britain think it is deeply irresponsible for any company to offer or recommend it before there have been any serious studies, or indeed any studies at all, which establish that the treatment does more good than harm.

    Unexpected side effects occur very often with new drugs. For instance, a drug for reducing acute episodes of MS, which is twice as effective as the existing drugs, was discovered to have a small risk of a catastrophic event: three of the 5,000 people who participated in the trial developed an irreversible and fatal brain disease.

    Over the years, there have been dozens of "miracle cures" for MS. When subjected to rigorous trials, all of them have been found to be no more effective than a placebo. For instance, a trial for "goat serum", which was being trumpeted as the first effective treatment, was abandoned recently when it was shown to have no effect at all.

    But that is not going to put off thousands of people suffering from MS from hoping that ACT's stem cell therapy is the answer. "What is the alternative?" asks Mrs Wilks. "I'll tell you what it is. It's waiting and watching as you get worse and worse. I feel so much better since I had the stem cells. If there are problems later, I'll deal with them when they arise. I don't know what the science behind the stem cell treatment is - and to tell you the truth, I don't care. I couldn't wait for certainty. I needed the treatment now."

  2. #2
    Senior Member roshni's Avatar
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    Nov 2005
    Old Bridge, New Jersey, USA
    Before and after MRI and PET scans of the brain would have been nice.

  3. #3
    There seem to be more and more reports of people travelling in different directions and paying large if not exorbitant fees to have treatments done that do not yet have adequately documented success/failure results. It is disturbing. Most of us here on this site are following the research closely and wishing for success and an early cure, and it is not at all difficult to understand why those who find the means to pay for the treatments end up going to clinics/enterprises like ACT/Cells4Health. And it is also not difficult to see why companies like ACT are in existence. Stem cell therapy is fast becoming highly competitive. Just look how many clinics they have worldwide.
    On their website they give a list of reasons for choosing them (over a competitor I presume) - here is reason 10:

    10) PROVEN - ACT cells have been used over 275 times in 52 different conditions spanning 3 years with no reported negative side effects.

    To me though, this doesn't seem like conclusive results seeing as they span 52 different conditions, and any reports post-treatment seem to be patient testimonies rather than conclusive scientific/medical tests. I was particularly upset to read the testimony of a 55 year old TM sufferer (given by his wife) whose pain increased after the treatment and subsequently he took his own life (his wife does go on to say that despite that she hopes ACT will continue its work).

    So, whilst there is nothing to say that a patient ought to know and understand the science behind the treatment, there is in my opinon something to be said against being charged large sums in return for what is still experimental surgery.
    Last edited by carbar; 01-29-2006 at 01:25 PM.

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