Now, that feels better. There are times when you read something and just can’t help being overwhelmed by rage. I can now write my opinion on this particularly bad piece of journalism, it’s only been festering away since June 2010!
The article on 04/06/2010, in The Independent ‘MS Drugs Trial ‘a fiasco’- and the NHS paid for it’ has been altered from the original, just enough to allay outrage, but it was, badly researched and biased.
He could, if he’d wished have actually asked a real person with MS what their views on this was – but even then, would he have asked the right person?
What he failed to describe, was that there are various types of MS.
There was no reference to this in his article – just ‘MS’, which anyone with knowledge of the wonderful world of MS, knows is woefully superficial.
Primary Progressive MS has no relapses and the MS drugs don’t have any effect on progression or symptoms.
The MS drugs that Mr Lawrance was writing about were the Disease Modifying Drugs, Avonex, Rebif, Betaferon and Copaxone.
These drugs are only prescribed to people who have been diagnosed with the most common type of MS – Relapsing/Remitting MS, or RRMS as it is usually called.
There are three more classifications of MS – Benign, Progressive Relapsing MS and Secondary Progressive MS.
There are newer drugs, which are far more effective, which are offered to those with PRMS and now, SPMS as well. SPMS is an awkward little bugger, as you can either relapse or not and you will progress – or you may just reach a plateau and stay that way for many years. It’s very infuriating.
It is generally believed that RRMS will eventually change to SPMS after about fifteen years. However, this isn’t 100% accurate, as some people never move into SPMS. How doctors know this, I have no idea. I suspect that in the next ten years or so, the picture may become clearer. I wish I knew more, but I’m just a person with RRMS.
I know, I haven’t dealt with the question of whether the risk-sharing scheme was a failure or not, but I have my own personal view on this. You may ask, so I’ll write it anyway. Back in 2000-ish, there was a huge injustice in the UK as NICE had decided that the DMDs were not cost-effective. As a result of much pressure from the MS Charities (with the exception of one) and patients and neurologists, in 2002 Tony Blair decided to make the drugs available to those who qualified. I don’t think the Risk-sharing scheme was ever going to prove anything, but it did bring access to the DMDs into line with the rest of the world, where MS is a problem. The UK isn’t high on this list- it’s second from the bottom, so ‘access’ is not as free as it could be…
Relapses (or attacks) can happen without warning; one minute you are fine and then suddenly you can’t focus, or use your hand and if this hasn’t happened before, then it’s classed as a relapse. If a disabling symptom has returned, then it’s classed as an exacerbation and when you recover, it’s the ‘remitting’ part.
In my case, Relapses=lesions=disability
All the relapses that I have experienced since diagnosis have been associated with a new lesion in my brain. A lesion is a scar formed from a spot of inflammation, which strips the Myelin Sheath from the nerves and leaves a small gap, which fills with liquid. This is what shows up on MRI scans as a white spot and if the inflammation is active, it will glow, if viewed with Gadolinium Contrast.
So, as I’m a fairly bog-standard RRMSer, I was fortunate in that I was advised to start a DMD as soon as possible and so I did. I didn’t have much choice, so took what was on offer, which was Rebif and waited to see if a) it had side effects and b) if it worked.
I’m lucky that in I’ve never had side effects and that it seems to have worked well. It doesn’t work overnight and took a few months to become fully effective, but since it has, which is ten years this year, I have had only four relapses. I had an MRI in 2009, after a relapse and guess how many more lesions were viewed? Yes, four.
This makes Mr Laurance’s final paragraph look totally ridiculous. I am in daily contact with many people with RRMS and they all agree that relapses are very bad things. It takes weeks or months to recover from a relapse and some of the symptoms never do improve. In RRMS, lesions and relapses in general, are closely linked. Activity – the aggressive rise of the number of lesions is how PRMS is diagnosed and why people with this type of MS, are offered stronger drugs.
I think that the Independent should have been fair and even in the response to this article. They printed no letters from people with MS and ignored the comments. This was extremely unfair.
I have MS and I know this as a fact; there are no certainties.
This is what makes treatment and diagnosis so difficult for neurologists. But hey, let’s not let an inconvenient factor such as the idiosyncratic nature of MS, get in the way of that week’s article, for which Mr Laurance was no-doubt well paid to write.
The headline of the final paragraph is indicative of the ridiculous ambiguity of this article.
“MS: why the drugs don’t work
Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results. Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease. ”