It's rather odd, to me at any rate, that this study has been viewed in so many different ways.
People have been seeing what they wanted to see, but the bmj report is much more complex than that.
I'm one of those lucky people for whom beta-interferon has worked. Of course, you only have my word for it that it works, but I believe it has.
I have been injecting Rebif44 since 2000, when I was diagnosed.
In the 18 months prior to this, I had abut 8 odd episodes, each lasting around between 4 and 8 weeks.
I started Rebif about a month after diagnosis as I was being hit hard by new symptoms without remission.
To my surprise (I didn't have great hopes) it stopped the relapses. I didn't have the flu-like side effects and four months later, I was able to enjoy my 40th birthday party.
I had three more nasty relapses in the next 5 years.
Last year, I ran out of Rebif and didn't stress too much as after all those years, I must have been SPMS. I started LDN, loved it, loved what it did for my bladder.
A year ago in April, I was hit by a very bad relapse. I spent two weeks in hospital, here in Spain and my new neurologist ordered an MRI.
This showed that I had three more lesions than my first MRI in 2000.
He thought that I was still in the RRMS phase and put me back on Rebif.
Now, this isn't like the US. In the UK for example, the patient has to choose what to take, even if their MS is aggressive.
My new neuro had to ask the funding committee at the hospital, for permission to prescribe Rebif.
So, now I take Rebif and LDN. I'm well, I can exercise and yes, I do realise that I have been incredibly lucky. I also eat a pretty strict Paleolithic diet and take Omega 3 fish oils and vitamin D3 supplements.
I would love to have CCSVI testing. But as we are incredibly poor and live off 300 euros per month, this ain't going to happen in a hurry.
So how do I feel, with the bmj report and that one-sided article in 'The Independent'?
Scared. I hate relapses. I don't want another. I don't want someone deciding that my DMD doesn't work, basing their decision on an economic model.
I logged on to this site to read a higher level of discussion. What I read was OMG STOP THESE DRUGS NOW!!!!! CLASS ACTION!!!
Please, take a step back and have a little more consideration for those people for whom the drugs actually work.
Most of you may hate 'Big Pharma'. I don't really care. What I care about is access to drugs and therapies (CCSVI for example) that may work.
It's been a very bad week for those few of us who are doing well on their DMD (CRAB) drug.
We all have or live with MS. You wouldn't think so. The impression I'm receiving is of two opposing armies, each shouting jeers at each other.
It makes me feel very sad.
Meanwhile, here's the explanation from the UKMSS.
Please bear in mind that the UK health system is about as far removed from the US health market, as Earth and Mars.
http://www.mssociety.org.uk/news_events ... _pwms.html
And yes, we feel let down by the UKMSS attitude towards CCSVI. Most people with MS desperately want to be tested.
Please excuse the silly user name. I'd like to change it if possible.