This Is MS Multiple Sclerosis Community: Knowledge & Support

I don't think many believe literally in the auto-immune theory. As I have said before, one of my neuros said that 'everything is autoimmune until the virus or bacteria is identified'. They haven't identified it yet - but not for want of trying.

The researchers know that inflammation plays a part - but whether this is the primary or secondary event has still to be worked out. Will aggressive suppression of inflammation early in the disease limit damage and delay / stop the progressive phase? Trials such as Campath will provide an answer.

The researchers know that MS is as much a neuro-degenerative disease as an inflammatory disease. More and more research is focused on how to stop the neuro-degeneration and also to repair the damage.

There is much work going on behind the scenes and more is known about what damage is being done and the possible mechanisms driving this damage.

What do we know now that we didn't know 10 years ago? We know that MS is much more than a disease of myelin, damage to the nerve fibre takes place and leads to disability. We know that in addition to the white matter (myelin), the grey matter is also damaged. We know that damage is more than just focal (lesions) and is widespread throughout the CNS. We know that the interferons have some impact on the number of relapses, but have little impact on disability and disease progression. We know that it is possible to dramatically reduce relapses and inflammation (Campath, Mitoxantrone, Tysabri). We know more about some of the inflammatory mechanisms (eg how immune cells cross the Blood Brain Barrier). We know that B cells play a role - not just T cells. We know that some re-myelination takes place. We know that testosterone, statins and minocycline are likely to provide benefits. We know on which chromosome the 'MS' genes are on.

So we do know more, much more. And with this knowledge, better treatments are in trial.

Neuro-protrective treatments and repair treatments are in early stages of testing, but this is another step forward.

Breakthroughs are coming - this assessment is not just based on hope but an appreciation of the advances being made.

For those who have had this disease for years (sometimes decades), these future advances will not be able to give back the years lost. There have been many false dawns and the sceptics have good cause to be sceptical. But it is not unreasonable to imagine that within 5 years or so, the medical profession could stop relapses and inflammation (they can do this now - although the drugs bring some risks), that there will be treatments to protect the nervous system (from degenerating), and that treatments to encourage repair will be in late trials.

So by September 2011, this site should be shut down. Arron will get himself a real job, Anecdote can concentrate fulltime on her painting, Jimmylegs and Dignan will be married with kids, and HarryZ will be writing to the FDA everyday demanding that Tysabri be withdrawn.

I attach some recent research that shows how the understanding of MS is increasing and how the strategies to address the disease are reflecting this new understanding.

http://lib.bioinfo.pl/pmid:16262563

Ian

Thank you for that post and that link!

The opinion I spouted in my previous post was definitely just that, an opinion -- and yes, I'm definitely an optimist, but as Bromley highlighted, we HAVE learned a lot in the last 10 years.

Bromley's summary was just a small taste of everything that's happened. If you want to go to Pubmed, you can check out the 15,440 abstracts on MS posted in the last 10 years. Admittedly, there will be no shortage talking about the CRABs, but there's a hell of a lot going on -- and don't forget all the good organizations working on the problems these days: the American NMSS has their "Promise 2010" initiative which is focused on heading in the right direction, not perpetuating old ideas, every other industrialized country has an MS foundation trying to do the same thing (Canada, UK, Australia etc), there is the Sylvia Lawry Centre, the Myelin Repair Foundation, the Accerated Cure Project...

Then there are all the improvements in imaging MS. In days gone by, researchers really were just guessing what was going on in the CNS of somebody with MS, now, we're still unraveling it all, but as least the researchers can SEE it (MRI, fMRI etc). I don't think you can overstate how important that is for advancing our understanding of MS. That didn't all start 10 years ago, but huge advances have been made in the last 10 years.

The story yesterday about nicotinamide also illustrates something about my knowledge of MS. I'd never heard of nicotinamide until yesterday, but obviously some bright research group was working on it for a while. Checking in Pubmed, there are a few references to nicotinamide and MS over the last 30 years, so I guess it's something I just missed. There's likely a massive amount of MS research I'm not even aware of. I'm starting to think it's like an iceberg -- what we hear about is only a small portion of what's actually happening.

Ian,



Problem is that since I'm a Canadian, they won't listen to anything I say although that doesn't necessarily mean I won't write them

Harry

oo

lolol lmao that's the best chuckle ive had in a while thx hee hee hee

oo

Hi Dignan & Bromley,

Boy!......... after reading your posts I was starting to feel even more pessimistic than ever!

You see that whilst I am not a complete ignoramus (although I am an Aussie, where you might start thinking Steve Irwin/Shane Warne etc.), and I can see that there has been a lot of 'busyness' in the MS medical scientific area over the past 10 years. However, my perspective on things is that there have not been sufficient advancements, pure and simple. Dignan pointed out that there have been over 15,000 abstracts on Pubmed - fantastic!......but do we have either a cause or a cure, yet? Maybe that's a lot of articles heading in the wrong direction or maybe there might need to be 150,000 Pubmed items before a favourable outcome is achieved. Who knows?

Ian, you 'worry' me when you put a 5 year time horizon (2011) on this process and imply that things will take their course to a favourable resolution. You didn't actually say there would be a cure (for everyone) but this is implicit in your flippancy regarding the closing down of this website. Ian, 5 years can pass in a blink. Remember how only 5 years ago we were in the midst of 9/11. I for one would be very pleased but also truly amazed if MS was history in 2011. For a bit of fun, maybe Dignan & Bromley might archive their posts from this thread and open them and have a read on (say) Christmas Day, 2011.

I confess that I am an MS 'veteran' of many years, but that has not made me bitter about the past. Rather, as with you, I am also hopeful for the future but with concerns regarding the direction that we are being led by the medical science industry. I would hate to see a continuation of lost opportunity.

Dignan, you made an interesting point regarding the tip of the iceberg; to the effect that we can see what's above the waterline (current MS published material) but that the scientists have much more (presumably 90%) that we can't see yet. That would be a nice thought but is not consistent with the evidence. In fact, moreover it is the reverse whereby there is often much hype and spin in order to attract research funding. How many times have we had friends or family excitedly telling us that they have seen an 'MS Breakthrough' on the 6 o'clock news. If the scientists have anything of any value (except for rare commercial reasons), it is out in the market-place in no time.

Where perhaps your optimism and my pessimism converge is in the recent reports on another thread regarding Prof. Scolding. As he says, they have tried unsuccessfully for a cure for 50 years, so now they are considering stem cells for axon & myelin repair. I think this is possibly the way to go. Clearly without either a cause or a cure from much targetted MS research, there might be a greater chance of success from a more universal fixit-mechanism viz. stem cell therapy. Now, if we can only get the politicians and religious extremists to see sense, we MSers might stand a chance!

Cheers,
Phil.

Phil,

Five years is also a long time in the medical world. Don't recall them doing face transplants five years ago, but they did one this year. Don't recall patients being fitted with robotic arms controlled by their brain signals five years ago but they did it this year. Survival rates for many cancers are improving year on year. The biggest change in just five years is technology - look at your mobile phone, your computer, your digital camera - you wouldn't be seen dead with the ones you had five years ago. And the same is true with medical technology e.g. scanners. Also computer power which can be harnessed to to do billions of calculations relating to the human genome, to screen molecules etc etc.

So my 2011 guess is just that. But I do believe that by 2011 there will be better treatments available for all type of MS. Monthly or year infusions, or tablets, will replace the current injections and be much more effective. Drugs to protect the nervous system from further damage should be available. Treatments to encourage re-myelination and repair should be in trials. There won't be a cure in the sense of a tablet which will stop the disease, repair the holes in our CNS, and get us back to how we were. But there should be treatments to stabilise / stop the disease and get some deficits back.

I bet in the mid 1960s many would say that organ transplants would not be available in their lifetimes yet by the 1970s they became commonplace.

I've said before that many who have had this disease for a long time will have seen many false dawns. But hope (through better treatments) is what keeps me going. And I might not be right about 2011 (it might be 2012) but what else are we supposed to do. I could take the view that I will get worse and worse and end up like Richard Pryor etc etc. But if I thought that I wouldn't bother getting out of bed in the morning.

So you can keep posting this pessimistic / negative stuff and scoffing at those who look forward to a better future. But just maybe in five years time, I might be proved right(ish). And I certainly won't be wasting my time on sites like this but will be trying to make up for the time I have lost to this disease.

Ian

Phil,

I'm certainly with you that I'd love to have seen more progress over the last 10 years. Also, I agree with you that a lot of researchers are wasting their time with further study of CRABs etc. As Bromley said, 2011 is likely too soon for a "cure", but there should be some decent new treatments by then. I'm also hopeful about stem cells.

Regarding the tip of the iceburg idea. I guess what I was thinking about more than the findings you mentioned that get over-hyped in the media, are the basic research findings that nobody talks about, that never get reported in the media because they aren't exciting. Those things come up in Pubmed every day and I'm sure there is more research that isn't reported in Pubmed.

I just took the list of clinical trials and some stats I found on typical historical success rates at each stage of the clinical trial process and when I crunch the numbers, I come out with 20 NEW treatments for MS by the end of 2016 (10 years from now). I think that number could even be considered conservative as I'm sure some people might argue that the drug companies are getting better at playing the clinical trial game (as we're all well aware) so the success rates could be higher over the next 10 years than they have been historically.

That's it.

oo

Bob,
Good god, no! How could you say such things about drug companies?! Well, on second thought, they are drug companies, you're probably right.

I hadn't been thinking of anything so sinister when I made the statement. I was just thinking about doing more thorough lab work before entering clinical trials and having more targets or biomarkers to test their therapies on in vitro so they would have a better idea of what it really does to a person before they start clinical trials.

That's it.

oo

Hi Ian,

I'm sorry........ I didn't mean to upset you or any other MSer. Pessimistic I might be (for good reason?) but I don't think I am being negative and certainly, I am not 'scoffing' at you if by that you mean showing derision or contempt. I apologise if you misinterpreted my views that way. Every MSer has enough to worry about that they do not need anyone giving them needless grief.

I was however, presenting some views in order to probe or test the ideas and perceptions of others. This is what is so good about sites like this. We have the opportunity to discuss important issues in a relatively intelligent and calm way. Unfortunately, sometimes things can go awry, given that we are not face to face and communications can be emotionally misinterpreted.

You are probably correct regarding the general medical advancements and mobile phone improvements etc which have been made in the past 5 years and maybe there lies the conundrum. Our expectations for MS treatment improvements are high but from my perspective, at least, are not as forthcoming as we would like.

Ian, I see you as a person who might have an important bearing on this whole area over the next few years. You clearly have a head for the subject. And you have enough front and you are logistically close enough to be rubbing shoulders with some of the best scientists and MS specialists. Maybe overall, it is helpful to have the annoying probers and testers like me for you to take questions and ideas back to the specialists. In any walk of life advancements are made by challenging the norm. I think secretly, the specialists might respect and find it helpful to have incisive and probing feedback from people like you.

So as I hope you can see Ian, I am suggesting that we need to bring these issues out in the open and challenge them from all directions. That should not mean that we are undermining anyone's hope for the future, but perhaps it will strengthen and reinforce our perceptions and beliefs. By so doing we may even get an MS cure sooner rather than later!

Regards,
Phil.

Phil,

Who knows what the future will bring in terms of better treatments. There are some big questions still to be answered. The worrying one for me is the nightmare scenario - the real issue might actually be happening within the axon, which leads to problems with the myelin and then the involvement of the immune system. The reverse of what the experts think is happening. Then there will be a lot more work to do.

My hope is based on knowing two neuros well - Dr Coles and Dr Giovannoni. These guys are academic researchers and major league players. I've never seen anyone as dedicated as Dr G. I correspond with him almost everyday to find out his views about research published. So I'm fortunate in seeing the better end of neurologists - not like the insensitive bastard who dx me.

Dr G accepts that much of the MS research is of poor quality. He admits that EAE isn't a great model, but ape / monkey models are expensive and in the UK the animal rights extremists can be a real threat to those involved in such research.

I think there is research being undertaken 'behind the scenes' which I hope may add to the knowledge. We are aware of the trials on the trials database, but Dr G mentioned a minocycline trial in Denmark. And I suspect that that there are other trials and research that we are not aware of. Quite a bit going on in Australia.

I also think that there will be research read-across from other neuro-degenerative disease (Parkinsons and Alzeimers). Any medication that can protect our nervous systems will be welcome.

My MS nurse calls this 'exciting times' in research - although I suspect she said the same 10 years ago.

The big event next week is ECTRIMS 2006 where hundreds of MS researchers present their research. While much is focused on the immune system, there is a section on neuro-protection. Prof Ken Smith is leading some of this work in the UK and Prof Baker is looking at cannaboids as a way of protecting nerves.

Another organisation that I came across recently is the Charcot Foundation. They are holding a seminar in November on stem cells and repair in MS. Prof Scolding is involved in this.

Maybe this time next week, after ECTRIMS, a little bit more might be known about this disease and we will find out a bit more about some of the trials underway. But as the conference is in Madrid, it could be that the researchers get pissed every night in a Tapas Bar (I'm a natural cynic at heart).

Lets hope for some really big breakthrough soon.

All the best

Ian