Peddling hope and stem cells
Linda Oatley
Open Door - August 2009 page 9
picture: marie-ll
I can appreciate what people chasing stem cell cures are doing. At one point there, during the early weeks and months of my diagnosis, I would have done anything and gone anywhere for the cure. That's the key.
My symptoms began in 1998. Originally I self-diagnosed myself as having a trapped nerve of some sort. I went to a chiropractor and on to a physiotherapist and it was the physio who first mentioned that it might be neurological. From there it was to the GP for a referral to a neurologist and then a MRI before I was told that it was MS.
It was the mental side of coming to terms with MS that was so much more traumatic than any physical effects. I was not unaware of what MS was on an intellectual level, but I was scaring myself to death and I thought I was going to die.
Of the people I know through the neuro-physiotherapy clinic where I am a trustee, there is one young woman with MS who has spent £13,000 to travel to Europe for stem cell treatment. It was useless - there is no change at all, if anything she has probably become marginally worse. But she is a young woman who needs an electric wheelchair that she can only operate some of the time. I don't think I could have been the one to say 'Don't do it'.
I also know a young man who has very jerky movements and his speech is quite slurry. He uses a wheelchair and needs three physiotherapists to help him stand. Every week, he asks me, 'Linda, when are we getting these stem cells? Where are they?' I tell him it could be five years or maybe 10, I really don't know. I say the same stuff to him every week, but he's young, he's got to wait, it will, hopefully be there for him in a legitimate way, some day very soon. I know if he could afford it, he would travel abroad for treatment.
To explore the 'hope' offered by overseas stem cell clinics I accepted an invitation from the BBC's Panorama programme to participate in a report they were putting together on the sale of foetal stem cells for neurological diseases.
Through its website, I contacted a company called Medra (www.medra.com) which sells treatment with foetal stem cells collected in eastern Europe. I arranged to have the treatment for $30,000 at their clinic in the Dominican Republic, where I would be treated by with the principal Dr William Rader. Naturally I had no intention of going through with the process.
I travelled to the Dominican Republic in March accompanied by Jim, the BBC producer who was to play the part of my 'brother'. This was not as exciting as it might sound. It was hot and sticky, the food not very good and the Dominican drivers are total nutcases. I was also a tad nervous about what was to come. Medra had wanted to know flights, room numbers, etc, which I felt was scary. We were not given any information about the clinic or where it was - they held all the cards.
On the day of the appointment, Jim and I spent the morning practicing our parts and he kitted me out with a mini camera which looked like a button with the gubbins strapped around my waist. Jim also had a mini camera in his filo-fax case. The plan was for me to get Dr Rader to say on camera what he had said to me on the phone - that the stem cells would remyelinate the nerves and I would get back full functionality and that he had seen MRI scans that showed damaged nerves repaired and all scars disappear.
We were taken by mini bus to a Spanish Colonial beach house and reversed into a court yard behind high gates. We were left alone for a while with white coated people coming and going... a fantastic view of the sea through wafty curtains but still behind a gated fence. Whilst we sat there I saw Dr Rader holding court and I also saw travels cheques changing hands. Based on the activity, Jim and I afterwards calculated that about $120,000 changed hands every hour! There are two days of clinics per month that we know about; small wonder that he's a millionaire!
We were shown to a treatment room with a small bed and medical paraphernalia on a bedside table. A few minutes later Dr Rader came in with a young assistant and asked again how he could help me. I played the nervous patient, which was not much of a stretch! I said I was worried and what could he tell me about the treatment, how does it work and is it safe, etc. He made all of the same comments he'd made before, which is what Jim had wanted.
We now had to get out of there. I said I needed a few more minutes to get used to the idea and get over my nerves. Perhaps we could come back tomorrow. He was telling me, and encouraging Jim to tell me, 'Linda, you've got to have this injection.' This was akin to foot-in-the-door double glazing salesman tactics, it was hideous. He basically saying, 'Let me, the clever doctor who knows better than you, decide what's best here.'
There is an intimidation factor around doctors, and people like Rader play on that. Why would you not believe him? He's standing there and saying 'I've treated 1,000 or 1,500 patients, 40 with MS and I've seen spectacular results so don't worry, just trust me.' But I knew more about him than most would. I knew of his previous incarnation on TV and that he is qualified as a psychiatrist. I knew he is a qualified doctor, but not in any sort of discipline around neurology.
In any event I talked us into the courtyard area to think again. We had decided at some point that Jim would go back to the reception area and say his 'sister' was now a bit hysterical - also not a stretch since I was so nervous I actually wanted to giggle. By coincidence another mini bus had just backed into the courtyard and Jim was able to bundle me and my chair into it as another lady with MS got out with her husband.
Jim was delighted with all the footage we had and I was just relieved. We changed hotels, just in case, and we left the island the next day. So that's why I've changed my name to Bond, Jane Bond!!
Dr Rader was given the right of reply and was interviewed in his Californian home. When he was asked about scientific proof and medical outcomes he was very angry and threatened the BBC with his attorney before eventually deciding that any publicity was good publicity. In the finished film he says, "In the long run it doesn't hurt me so long as you spell my name correctly because patients don't give a damn what you say about this intellectual shit... We will get patients from this."
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- Standing up for MS
