Thursday, June 07, 2007

Funky video explains all

Well, I can't find a copy of it and I did search for a good 90 seconds or more on you tube, so sorry - you will not be seeing the video that made me 'click' in two different ways.

Background - hmm. Well on Sunday we went down to the SEF - the peace and friendship stadium, which was housing a medical exhibition for the lay person. Bunch of bollocks, no really it was crap firms selling para-medical trivialities like battery powered vibrating massage toys and orthopaedic chairs and the like. At the same time, there are various talks open to the public about a variety of issues.

So, there we were, with our brave faces on, going to a talk all about the monoclonal antibody whatsit - to learn about the newly approved dog's-bollocks of MS medication. It was with some trepidation that I went - yes, I wanted to learn more about this thing and of course I did not realise from the advertising leaflets that its the drug that had its clinical trials suspended in the states because of people dying, but which was rebranded and re released because one in a thousand rare encephalopathy cases and some deaths are not to be put in the way of a multibillion (billions and billions) dollar industry. There was also a talk about fatigue which is more what drew me, and more about that later.

Brave faces - yes, so there we were. I was wearing mine because I was wary of being confronted by a hall full of wheelchair bound, walking stick wielding people and having the little voice in the back of my head telling me, "you see that, that's you that is, in a few years". So it was my first time in front of a bunch of people having the same dx. All I will say about that is that I rather hope that those with the canes and the wheels are more likely to come to these meetings thus skewing the statistics slightly.

Anyway - the lady doctor gets up and does a very rushed rendition of a bunch of powerpoint slides she did not prepare herself. One of these slides had a video which helped me understand for the first time one of the mechanisms of how the MS works.

The video shows this big spikey white guy zooming around in the blood and then squeezing itself out of the blood vessel (crossing the blood brain barrier) and grappling onto the myelin of a brain cell which it then goes on to destroy. So now I understand the whole blood brain barrier white blood cell whatsit alittle more visually than before.

And the lady doctor then went on to talk about the new wonder drug and what it does - and then came the second realisation of the day - the drugs are fighting the "how" of the problem. Tysabri (and as far as I know all the interferons) stop the spikey white guys from crossing the blood brain barrier. That's what they do (and a little bit more, but essentially this is it). First off, I am appalled that we are dealing with the "how" and not the "why" dammit. I am a "why" sort of guy and I'm fucked if I'm going to sit back and expend energy on building dykes rather than stopping the flood waters from rising in the first place.

The talk by the lady doctor was heavily into selling Tysabri, and spent a lot of time talking about the encaphalopathies which were caused during the clinical testing, but she somehow neglected to say that death resulted during the clinical tests in the states. A heck of a lot of slides all about the encephalopathies

Did I mention that the whole thing is sponsored by Genesis? Ah, no.

If I had remembered this myself, I would have been expecting the shameless plug for the sponsor's anti fatigue drug which took up most of the talk on the fatigue subject. I was not a happy camper. I don't want to hear about drugs, to treat syptoms I want to hear about what you are doing to combat the cause.

Anyway - that was a semi-wasted morning which could not be redeemed not even by the amusement afforded by watching the people turning up after our talks had overrun for TV sex-doc Askitis' talk on erectile dysfunction. Oh and by learning that the local office of the MS Society has been overrun by representatives of pharmaceutical companies and big industry and they are using it to their own aims while the patients go unheeded. That wasn't good news. The good news was in fact that a new society has been launched only for those with a diagnosis, to ensure that that does not happen again. It looks like some disgruntled patients have run off with the mailing lists and are regrouping elsewhere.

The day was properly rescued by my first real visit to the NAM since before the quake, and that needs its own post later.

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