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They said there’d be a cure in 10 years. Why are we still waiting?!?

Hi everyone

does anyone remember when the ms magazine said there’d be a cure in 10 years. Think that was in 2002. I thought then omg 10 years!! It’s been well over that now. What’s going on? What happened to that goal or did I imagine it??

My consultant doesn’t think we are even close to finding an absolute cure for MS. There are huge advances in DMD’s especially for R&R, but to find a cure for MS is not even on the horizon. Even finding something thats helps repair damaged myelin is probably many years away. I believe theres a drug (Siponimod) that MIGHT be released next year that can possibly help slow down progression in SPMS, but even that is not a definite thing, and if it is released it apparently brings a few nasty side effects.

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Even if a cure had been created in that ten year timespan, it still might not be available to us . Clinical trials take years. Other than that, the prediction was probably made based on a line of research that seemed promising but didn’t work out as they’d hoped. I remember back in the late 70s interferon was heralded as a likely cure for cancer. That was forty years ago and we’re still waiting for a cure for cancer. Interferon is useful for treating RRMS, though, so the research wasn’t completely wasted.

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hiya loola

i have heard several talks from Professor Siddharthan Chandran based in edinburgh. there is no cure-yet. he is a very ‘down to earth’ speaking man but his knowledge and understanding is obvious.

i think we are still many years away from finding a cure as there is too many variables. personally i think the answer lies in our stomachs-there has been studies looking at this in edinburgh.

perhaps someone who is good at searching these things out will find links for you to read? (thats not me!)

i think anybody that puts a time limit on finding a cure is naive to say so…

ellie

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Sadly I tend to agree .

I guess it depends on what you mean by a cure. If it’s reversing damage done, then I think you can forget about that for a very long time. A more realistic definition would be preventing further damage and some claim HSCT is already pretty close.

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I took part in the research in Edinburgh into the role of mitochondria in MS. To the best of my knowledge it still hasn’t reported. It was world wide research and I went to the Anne Rowling clinic in Edinburgh. I too have the feeling that the gut may play a very large part in the disease.

Cure? Fat chance. If we know ten years from now what actually causes it, whether it is one disease or several etc etc, that will be a start!

Alison

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Well there has never been a cure for any Neurological condition in the history of mankind, I do don`t think their will be in my lifetime. JD

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Why are we still waiting - what always surprised me re. research is how little actual interest is taken in the person with m.s. I have m.s. a close relative has it - you’d think that every gene test imaginable would be done to find the common link - no one is interested. Do we the pwms have something or don’t have something that those who don’t have m.s. have. (if you know what I mean!) Or perhaps we simply?? just have poor quality myelin which can’t repair itself like it should.

Like Cracowain I have 2 very close family members with confirmed MS and now a third, again very close, currently being tested after showing symptoms. Yet when ever I mention this to my MS clinic its never really taken on board, but myself and my family members we really do think theres a link somewhere. Again another valid point that Cracowain makes is the total lack of public interest in MS as a whole. When was the last time we saw an advert on TV regarding MS research ? I’ve never ever seen or heard a TV or radio advert about MS, or even seen anything in print in our daily papers, yet everyday, almost every hour you will see or hear adverts about cancer, save the children, help to get clean water in Africa, save the donkey, save the elephant, save the planet, save the homeless, donate to the hospitals, donate to the church, donate to the labour party, conservative party, ect ect ect , the list is endless. I think you get the point… Dont get me wrong I do think theres many charities & organisations that do need help and need all the public awareness they can get, but sometimes I feel like screaming at the TV " WHAT ABOUT US" !!! Why is there not more public awareness regarding this horrible disability ??? I honestly cannot ever recall ever seeing anything on TV or anywhere else for that matter regarding MS awareness or asking for donations, not even from the MS Society !

Dead right nobody cares about MS Does it kill you no Does it shorten your life no Read a story in the US a couple of days ago that private spending on MS drugs was over 100 billion dollars a year they do not want a cure it is generating millions for the drug companies Cancer takes priority for scans and appointments at my hospital, we are at the back of the queue

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I agree i don’t think there will ever be a cure as there is far too much money being made on the drugs used to ‘treat’ MS.

There’s a difference between drug companies and MS researchers. The companies are interested in making money from drugs. The researchers want to find a cure for MS. Yes, it will probably be yet another drug, but not all research is done by drug companies. There are researchers in laboratories in hospitals and universities who have no direct connection with the drug companies. You can’t say it’s not in their interest to find a cure for MS.

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I think the reason you don’t hear/see much about ms is because generally people don’t get it but they get cancer. I’ve always said to friends and relatives that I don’t have a fashionable disease. People don’t like to talk about it or even want to understand it. They are just too busy with their own lives. I remember when I was diagnosed someone said at least it’s not cancer! To which I said at least if it were I’d have a chance of being cured!! I don’t think the society want to waste money on big advertising campaigns.

Fortunately m.s in children is very extremely rare and illnesses which don’t affect children tend to get less publicity than others.

I was told 55 years ago there would be a cure within 5 years for type1 diabetes. I’m still waiting laugh

I agree with jactac. a huge part of the problem is not only the complicated nature of the disease that makes finding a cure near impossible but also that we are a low profile group when it comes to the media - we are never advertised, in the way that cancer, heart disease, parkinson’s, dementia or even arthritis is at the moment. While these diseases undoubtedly affect far more people, and therefore attract more attention in the public mind, a little multi media consciousness raising on our behalf wouldn’t go amiss. Perhaps then even more funding would be available for research ( for the nice man with a tank full of zebra fish, which are capable of repairing their own myelin when its damaged), instead of just slinging lots of money at expensive drugs which either don’t work for everybody when it comes to slowing down the pace of this wretched disease or cant be prescribed because they just aren’t suitable for what ever form of it you are unfortunate enough to have.

All very maddening.

AV/Nia.

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Interesting Guardian interview with the MS tissue bank.

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Roughly around 120,000 people in the UK with a Type of MS. 80,000 have RRMS

20,000 have SPMS

12,000 have PPMS (50% Make 50% female).

8,000 have another form of of rare & perplexing MS.

SO - With 6,000 women and 6,000 women, we PPMS’s are just 1 of 6,000 out of 66 Million people legally registered in the UK. Not enough to make a drop in the Ocean, we’re possibly just a tiny tear in 2 Oceans.

Cancer is a killer but a lot can survive thanks to treatment getting cheaper. Some don’t survive. Other illnesses have been eradicated in Britain, like fatal cholera.

I’m no medic nor expert, just happen to have PPMS & lots of lost functions. A week ago I wondered What am I waiting for? I know I’m already losing me & my efficiency. Am I just sitting or lying here worried if tomorrow something else fails in my body from the slow rotting brain. Yes, it’s depressing and annoying.

I realise there is only so much money available from G’ment. Considering there is No Cure and research is World Wide, we can save many people from death, pain etc so they get a higher amount because those people can have their life saved.

Figures are approximate, not factual but give an idea of what the chances are of a cure. My rough and illogical logic helped me to look at perspective.