MS not an autoimmune disease

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Postby finn » Wed May 12, 2004 11:37 am

Sorry, time to leave the board.

-finn
Last edited by finn on Sun Aug 28, 2005 7:53 am, edited 1 time in total.
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Postby jazzcat » Thu May 13, 2004 7:07 pm

Hi Finn,

Once again, thanks for sharing. That's fascinating! :)

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Postby finn » Thu Jun 03, 2004 11:11 am

Sorry, time to leave the board.

-finn
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Postby Shayk » Thu Jun 03, 2004 6:54 pm

Good job!

Now, I have not been able to google my way to more information on the "world of MS" reaction to the Australian study that I got a lead on several weeks ago.

The "lead" was a conference on MS in the UK (mid-May) where Bruce Trapp (? I think) who wrote the editorial about the Australian study, was going to give a presentation on "Is MS A Neurodegenerative Disorder?", and someone else was going to give a presentation on the "EAE Mice model".

My recollection is that whatever I read about the mice model presentation was going to be a critique about how many things seemed to be promising in those EAE mice, but not so promising in human trials.

Is there a UK or European member out there who has read or heard anything about the content of those presentations?

My apologies for being less than specific about the "lead". :oops:

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Postby finn » Sat Jun 12, 2004 2:54 am

Sorry, time to leave the board.

-finn
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Postby willysnout1 » Sat Jun 12, 2004 10:46 am

finn wrote:That was written almost 6 years ago, and still drug companies are developing drugs that are only able to "dampen down the hostile immune system", not halt the axonal damage. That is of course understandable, they just offer what the market wants. In my opinion the problem is that the majority of the MS community seems to be satisfied with the situation. Antegren will come, and everybody is happy. Our MRIs will look even better than with ABCRs!

Who says anyone is "satisfied?" We'll take what we can get.
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Postby finn » Sat Jun 12, 2004 12:04 pm

Sorry, time to leave the board.

-finn
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Postby willysnout1 » Sun Jun 13, 2004 1:38 pm

If you use one of the ABCRs and you're not doing that fine, your neuro says you would do worse if you didn't use the drug. And if you use one of them and you're fine, it is only because of the drug you use.

It is worth of 14.000 euros a year, isn't it?

finn, all I can say is that I share your frustration.
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Postby Shayk » Sun Jun 13, 2004 5:42 pm

Finn

I am so glad you are a master (as lots of others are too) at this computer technology and were able to find something by Bruce Trapp. :D Very, very interesting in my opinion.

I did find the conference info and it was the British (? or UK?) MS Society's Key Research Event, MS Frontiers, May 10-11 in Birmingham. Bruce Trapp did the keynote presentation: Is MS a neurodegenerative disease? He's Chair of Neurosciences at the Cleveland Clinic here in the US and is also the one who wrote the editorial about the Australian research. So maybe there will be further news shortly about his remarks.

Also on the program at the conference was Dr. David Baker, Everything stops EAE, nothing stops MS?, from the Institute of Neurology I guess if you're in the UK you know where that's at.

The MS Society (UK) Research Bulletin 33: April 2004 had an interesting summary of nerve fibre loss and inflammation.

In MS, a number of events occur including inflammation, damage to myelin...and nerve fibre loss. The link between these processes is not fully understood although it's known that substantial inflammation is associated with a greater number of damaged nerve fibres. The purpose of this study was to assess whether widespread nerve fibre loss (a process called atropy) occurs, even when areas of inflammation in the brain and spinal cord (as visualised by MRI) have been suppressed.

.....Results showed that despite effective inflammation suppression, atrophy continued. The authors suggest that atrophy is likely to be triggered by a large amount of inflammation but proceeds independently even without continued inflammation.


I know you and others are also interested in stem cell research. (I still can't quite wrap my head around all of that, but give me some time :lol: ) The above research was out of Milan and the title of the paper is Brain tissue loss occurs after suppression of enhancement in patients with multiple sclerosis treated with autologous haematopoietic stem cell transplantation.

Hope everyone is well!

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Postby HarryZ » Sun Jun 13, 2004 6:26 pm

Finn,

An interesting aspect of MS is that generally, after 10 years of having the disease and without taking any medication, the number of exacerbations is reduced and the symptoms continue to progress in a slower manner.

The ABCR drug makers tell us that their medications " reduce the number of exacerbations and slow down the progression of symptoms."

A very MS knowledgeable friend of mine attended a MS update seminar a couple of years ago and the neurologist was expressing these very virtues of the CRAB drugs. My friend stood up and asked if both the natural progression of the disease and the drugs presented similar results, how do we know it's the drugs that are doing anything for the patients? The doc's response..."we don't"!!

And these companies are getting about $ 12,000- $15,000 a year for this. In the UK, from what I've read, the CRAB drugs are not used very much. Their National Health Service isn't convinced that the cost and results merit much support.

And BTW, don't worry about how you express yourself on this forum. Your English is excellent and most of us know exactly what you are saying! Your posts are a treat to read.

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Postby finn » Mon Jun 14, 2004 5:45 am

Sorry, time to leave the board.

-finn
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Postby Guest » Mon Jun 14, 2004 10:00 am

Seems to me that one approach to the question of drugs not getting trials is to work for an organization that would do independent trials on drugs overlooked by the existing system. Most of the trials would show no proof of efficacy, but I suspect every now and then a new treatment would be found and not just for MS but for a lot of things.
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Postby HarryZ » Mon Jun 14, 2004 11:51 am

Anonymous wrote:Seems to me that one approach to the question of drugs not getting trials is to work for an organization that would do independent trials on drugs overlooked by the existing system. Most of the trials would show no proof of efficacy, but I suspect every now and then a new treatment would be found and not just for MS but for a lot of things.


Yes, ideally this is one possible route to go but again it comes down to money...who is going to fund it? I suppose this could work for a small trial but when it comes to FDA approval, we are talking millions!

There is a MS medical group called the Consortium and they are looking at possibly doing some small trials for LDN. And in Europe, where social medicine is practiced far more, something like this has more of a chance of happening.

Unfortunately, the NMSS's press release on LDN would have scared a lot of people away, especially in the field of medicine. The NMSS carries a lot of weight when it comes to MS information and most medical people take what they say as gospel. In spite of this, there are doctors that are still very interested in doing some kind of trial with LDN. I guess we'll just have to wait and see what happens.

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Postby willysnout1 » Mon Jun 14, 2004 1:59 pm

Yes, ideally this is one possible route to go but again it comes down to money ... who is going to fund it?

This is the big issue. A drug company would be crazy to fund a study on an alternative that would undercut their revenues and profits. A university ought to do it, but they really don't have the resources to run trials on everything that has accumulated anecdotal testimonials. I think the only way to really accomplish it would be if some zillionaire could be induced to fund an independent drug trial institute of some sort.

There is a MS medical group called the Consortium and they are looking at possibly doing some small trials for LDN.

The issue would be credibility. There's not a lot of use in a trial if it is conducted by advocates, as opposed to one conducted by a recognized, independent institution.

And in Europe where social medicine is practiced far more, something like this has more of a chance of happening.

Maybe so. I don't really know how their systems work but you'd think the Euro governments, especially in the UK and Scandinavia where there is lots of MS, would have an incentive to test a cheaper alternative.

Unfortunately, the NMSS's press release on LDN would have scared a lot of people away, especially in the field of medicine. The NMSS carries a lot of weight when it comes to MS information and most medical people take what they say as gospel.

I think you overstate the effect of the NMSS's press releases.
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Postby HarryZ » Mon Jun 14, 2004 6:13 pm

Willy,

>The issue would be credibility. There's not a lot of use in a trial if it is conducted by advocates, as opposed to one conducted by a recognized, independent institution.

I don't think you are aware of just who the Consortium consists. They are a mostly North American group of MS docs, MS speicalized nurses and medical facilities that deal exclusively with MS. They meet several times a year to discuss the latest findings in MS. They have a number of excellent MS docs who are very current on the disease. They are interested in possibly conducting LDN trials to scientifically find out if the anecdotal information is valid.


>I think you overstate the effect of the NMSS's press releases.[/quote]

I don't think so! In North America, the NMSS has a huge influence on the direction that MS research is going. Most docs don't have the time needed to look at every single MS item that surfaces and they rely on what the NMSS has to say in both press releases and in their publications. Anything of any consequence that comes up with MS...you will soon see a comment by Dr. Stephen Reingold who is one of their kingpins.

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