HEALTH AND MEDICAL RESEARCH
You never recognise how important good health is to your life until you don't have it. When I was in my twenties I caught Malaria whlist
I was in Ghana. I was looking into building a Recording Studio with a couple of friends, Mac Tontoh from the band Osibisa, Ghanaian by birth and
Mike Campbell, a half Tanzanian half Scottish sound engineer who loved African music. I didn't notice that I was unwell until I had been back a while. I was then told I had the flu and given
paracetamol by my doctor, so by the time I got to hospital I was in a pretty bad way. Three and a half weeks later I emerged, two stone lighter, as white as a sheet and unable to walk more than
twenty feet without sitting down. It was right after this that I had my first ever 'my god life is short' moment and went off to learn to ride a horse and fly a plane, two latent ambitions.
A few years ago I had a similar experience when I found out that I had Multiple Sclerosis. In a way it was a relief to have a diagnosis,
I had had a lot of weird, hard to explain symptoms and that is always freaky. And I was very fortunate in that the Neurologist that delivered the bad news turned out to be one of Britain's leading
researchers in the field.
He suggested that I might like to have a go at something very new and still rather experimental. It was an antibody based chemotherapy that
was licensed for use in Lymphoma. The antibodies attached to the CD52 receptor on T cells, marking
them as evil, then the rest of the immune system mopped them up. It left a small reservoir of cells somewhere for the system to bounce back from, unlike other chemotherapies, so it didn't require a
subsequent bone marrow transplant. I think the idea really, to put it crudely, was to hit the adaptive immune system (which seems to be the bit that attacks myelin
and causes MS) with a big stick, and that when it recovered it would be in better shape to recognise the bits of me that were actually me and not dastardly bugs.
It took me a little while to summon up the nerve for this. It was very new. I think at the time the number of people who had tried it was in the low teens. There had not been any formal trials at that
point although the anecdotal evidence was very good. There were a number of known nasty side effects that could happen. Around a third of patients
develop Graves Disease, and autoimmune disease of the thyroid. A couple of people have developed other odd auto immune disorders.
Curiously these side effects were not found when it was used in treating cancer patients, so there was increased evidence of some underlying immune regulatory dysfunction in MS sufferers.
I vacillated for a while and then was kicked into action by a nasty attack that left me lying on the sofa for two weeks and subsequently unable to walk more than a few hundred metres for the next few.
The protocol at the time was a five day intravenous course. You feel really rough for a while as all the T cells die. They release great stores of histamines into the blood and intravenous piriton is the
only palliative. One then has a few months of being seriously immune compromised as the immune system bounces back. It never gets back to where it used to be and I now have probably half the T cells
that I used to circulating at any one time.
Two years later I started to feel as if it was returning a little, so I went and did it again. By that time the protocol had evolved and it only called for a three day course. Since then I have
been remarkably well and seem to have recovered quite a lot of the functionality I lost originally. No one can really tell that I have MS these days. I can no longer go hill walking, that is a step
too far, but I can ride a horse for five hard hours, which is plenty for me.
Campath 1H is now being tried in a large clinical trial
and apparently the initial results are very promising. Let us hope that other people might have as positive
an experience with it as I have. John Zajicek is now Professor of Clinical Neuroscience at Plymouth Medical
School and is running some very interesting research projects. He was the chap who did the first trial
of cannabis extract in symptom relief for MS patients (and found some intriguing hints of a neuroprotective function towards
the end of that). He is now running a much larger trial, called CUPID along the same lines.
He also runs a project called SWIMS, the South West Impact Measures Study. Isabel and I have helped to fund this, along with the MS Society. One of the biggest problems in evaluating any new treatment for MS is the difficulty in assessing the
progress of the disease. Coupled with the often slow progress of symptoms and poor quality measures used it means that clinical trials either need huge cohorts or very long times to
get statistically significant results. This makes them very expensive and is one of the reasons for the dearth of therapies available. The SWIMS project is an attempt, using some really
smart statistics and a large cohort (more than 1000 now) of patients to improve the sensitivity of the outcome measures and thereby reduce future trial costs and durations.
If you are feeling flush and want to help, here is where you can donate.
Go on, get that wallet out!