To wish the papers would stop telling us about another 'miracle cure' for MS

[MrsKravitzFromAcrossTheStreet]

Today my lovely DS brought me a copy of the Telegraph to show me an article describing a 'miraculous' treatment for MS that makes the blind see and the paralysed walk again apparently. I thanked him and agreed that yes, that is encouraging, hope it's available soon! (as I do with everyone who brings my attention to these reports which crop up regularly) but I knew it would be yet another drastically exaggerated tale of a treatment which is probably no good for my type of MS and I am unlikely ever to be offered by my doctor anyway.

And as I had expected, when I looked into it I found this blog from Barts and the London and this article from the MS society which describes the results much more tentatively. In short, the results of the trial are encouraging, but just half of the participants saw improvement. And most importantly, they all had relapse-remitting MS for less than ten years and it doesn't work for people with the progressive kind (ie me).

I'm so pissed off with this lazy, sensationalist reporting that raises hopes unrealistically. I have learned to pay little attention to these articles but I feel so angry that they have begun to affect my own children, so their hopes for me can be dashed too.

AIBU to wish these fucking journalists would tone down the sensationalism and claims of miracle cures in these articles and print all the relevant facts FFS.

My lovely cousin was recently diagnosed with MS, she is dealing with it but her 10 year old DD was understandably worried.
Imagine my cousins surprise when her DD's teacher decided to do a health class and talked about MS and how not drinking coke and eating fatty foods was the key. Of course, DD came home skipping and told cousin how simply changing her diet would cure her.

She ended up going into school to speak to the teacher. It was poorly timed (though teacher was unaware of diagnosis or the DD struggling to come to terms with it) but the information she was passing on was very wrong.

My understanding of MS is limited, though I'm trying to learn more.

YANBU, my mum has MS and I have Crohn's, we both get fed up of people who think they have found a cure for us but it's just another sensationalised article. I've even been told we just need some antidepressants to cheer us up a bit and then we'd feel better! They are the kinds of disease that effect everyone differently and I don't think there is going to be some magic cure-all that will fix us all :-(

I was coming on to post something similar to LurkingHusband, but he's done it better so that one job off my list

I work in and around step 9 & 10, and getting from that point to the market can take 5 years. And the amount of trials that are dropped in and around this point is big, really big.

The thing is that the people involved in the early steps still need to show, I can't think of the best way to say it but they need to publish their work to some extent, to help their career.

These papers are usually very dry and published in specialist journals, they would never promise a miracle cure if they're feeling really excited they may write something like:

'A better understanding of the activity of Drug XYZ in vivo could provide information to optimize its use in autoimmune disease and oncology applications.'

Somehow newspaper journalists can take this and declare that company ABC have developed and new cancer cure. . . . .

Ben Goldacre's book Bad Science is an interesting read and can help pick apart these articles.

Could I ask a question about RRMS - when you are not having a relapse, do you feel normal then, or are you still feeling ill, just not as badly?

sort of, yes... there are days when my symptoms are really "irritating" - for want of a better word - I can function fine, but I am slower/stiffer/sorer than other days. Other days, I don't notice any symptoms, in that I have to stop and think "was my hand playing up today?" But I do have symptoms every day.

On a relapse, I can't function at all. But luckily they've been very few (as I end up hospitalised)

My SIL told me about a guy who "cured" himself by drinking water. Who knew! I wonder how much he had to drink, as I am averaging on 3 litres most days... I wanted to smash her face in... and she's actually lovely.

CFSKate I used to feel ill when I wasn't relapsing. Exhausted and my legs would feel like they were burning. I could sleep for hours and wake up exhausted and drained. I'd forgotten what it was like to feel 'well'. I'm well at the moment (touch wood) and it's lovely to wake up and not feel exhausted all day and my legs no longer burn. When I relapse I feel very, very drunk. Sometimes I slur, sometimes my legs are weak, I usually vomit. One relapse caused a squint so it can be symptoms that people can see IYSWIM (it went away along with the burning limbs).

Could I ask a question about RRMS - when you are not having a relapse, do you feel normal then, or are you still feeling ill, just not as badly?

It's hard to tell really. Having had MS for 25 years (all my adult life) I don't really know what "normal" is. I don't think I have as much energy as other people but it's hard to know for sure. You don't always know when you are having a relapse anyway-lesions may appear on an MRI scan without symptoms.

Cfs Kate - I think it's different for everyone. My ms is quite advanced and I've just had a baby so I am pretty much poorly all the time atm. Pre children, I was never 'normal' between relapses and have used a stick for years, but i did feel a lot better.