This Is MS Multiple Sclerosis Community: Knowledge & Support

I tend to react that way to postings here that imply these big conspiracies on the part of an evil establishment that wants to perpetuate MS for the purpose of making money, etc etc etc. I'm not as complacent about these things as I might appear, but I'd like to see some evidence along with a spirit of equivalent skepticism when it comes to various claims and reprsentations.

There's an "insurgent" undertone in many postings here, and I don't go for it. It's almost as if the NMSS and the drug companies are being blamed for multiple sclerosis. Hey, I can even believe that if the evidence is there, but the insinuations without evidence make me want to throw things. Since you can't do that online, I do the next best thing.


The ABCRs are proven to do certain things, i.e., slow the accumulation of lesions. The manufacturers are strictly limited as to the claims they can make. I don't feel misled. I am very aware that this stuff is a crapshoot. BTW, I am not somehow fond of sticking a 1-1/2" needle in my leg every Friday night. If something else works better, I am all for it.


I will take a look through the thread on that subject.

Sorry, time to leave the board.

-finn

I do see it that way, i.e., that it's healthy to be suspicious although I guess I prefer the milder term "skeptical." Here's the rub: My skepticism is omni-directional, and that really bugs people who think that they should somehow be immune from skepticism on the grounds that they have gentle good karma or something. Wanna feel like the proverbial turd in the punchbowl? Tell a vegan that you think it's a waste of time; that you sort of like being at the top of the food chain; and that those gentle smart dolphins are the gang rapists of the ocean.

I don't know if you've ever heard of or read anything by H.L. Mencken, an American journalist who made skepticism a high art in the 1930s. He didn't spare anyone. He came from a long line of folk skeptics before him, including the granddaddy of all of them, Mark Twain. That's where I'm coming from. The American phrase is: Don't take any wooden nickels. Bulls*** doesn't smell any sweeter because it came from your own cattle.

To me, the alt-med crowd makes wonderful fodder for skepticism. Say what you will about the drug companies, but they generally make things that work. And for all the hoo-hah about "Western medicine" and how inadequate it is, I see very few people boasting of being cured by shamans and priests, and even fewer such cures holding up to inspection.


I think there should be clinical trials of these "better" meds, and I agree that the reasons for a lack of such trials ought to be a front-and-center issue for debate.


I have read the article. At first glance it seems really promising. I'm going to talk to my neurologist about it, and I'm going to read it a few more times before offering further comment.

I posted on a different board about minocycline. Here is a link to that discussion

Sorry, time to leave the board.

-finn

Willy,



In most clinical trial publications, we constantly read about how the CRAB drugs have "reduced and/or slowed the accumulation of lesions". Now this is very nice as far as MRI pictures are concerned but time and time again, we are told that there is little if any correlation between MS symptoms and the lesions. When they first started to use MRIs on MS patients, a lot of excitement was generated because researchers could now see these lesions. But after a few years it became evident that there was a lack of correlation between the two. A patient could have multiple lesions and no symptoms or have no lesions and many symptoms and disease progression. That is one reason why a diagnosis of MS can't be made by MRI alone.

So it doesn't do the MS patient much good to see that there is a reduction of lesions from his/her MRI but he/she continues to suffer from the many possible symptoms of the disease as the MS progresses along its normal path.

I guess that's why the Cochrane Group of researchers published that damning report on Copaxone and stated that it was useless in the treatment of MS. The lesions got reduced but the patients continued to become sicker as the MS advanced.

Harry

Harry,

I have to just simply say that I support your conclusions. I, also, have found the same things during my, as I think I have somewhat proven, extensive research. I keep surmising over and over again, that the longer you have MS, the less the immune system even becomes involved, and as we all know, the ABCRs are almost (I say almost - Copaxone is a little different in some ways) exclusively targeted toward the immune system alone.

And even as you get older, you can get lesions in your brain that an MRI might pick up that have nothing to do with MS at all. MRIs are still a very unexact science, even if they are one of the best tools we have right now.

Although, I will admit that I'm not completely familiar with the "Cochrane Group". Where are they from?

Deb

Deb,

[quote="OddDuck"]Although, I will admit that I'm not completely familiar with the "Cochrane Group". Where are they from?[quote="OddDuck"]

Here is their website which will describe more about them than I can ever hope to.

It was the Italian MS reseearchers who did the summary study on Copaxone's effectiveness.

http://www.cochrane.org/index1.htm

Harry

I saw that, and I tend to agree.

I will say this about the Cochrane group. Perhaps this is obvious, but they are not infallible. In my particular sub-field of work, their published reviews (and its conclusions) are at odds with the opinions of some researchers who are very good thinkers and researchers.

HarryZ, my view of the ABCRs is that they are a crapshoot. You've noted the downsides and the controversies, but I also think there is a solid body of evidence showing that, for a significant proportion of people, the ABCRs reduce the accumulation of lesions over time.

While it is true that there isn't a tight correlation between lesion count of severity of MS, there is enough of a correlation for researchers to be able to use lesions as a marker of the disease and to say that fewer lesions is generally better than more lesions.

Beyond that, there is general agreement on lesion location and symptoms. It's not as precise as any of us would want, but it's far from random. See this link and scroll down to the section on MS for more information.

Do we want more information? Yes. Do we want better drugs? Yes. Do we want more research? Yes. Do we want different approaches? Yes, but there's a balance to be struck because I, for one, don't want the NMSS to be wandering into the alt-med swamp or being sucked into quackery or the usual bogus therapies or the ever-changing panoply of spurious "cures" or the perennial hoo-hah of whack-job herbal medicine or the gentle ministrations of New Age charlatans offering neo-religious guilt trips.

This is one of my points......here we have two groups of MS researchers, both having worked within their fields for a number of years and each coming to very different opinions about Copaxone. What is the MS patient supposed to do when trying to determine what medication he/she should take?

Harry

Willy,


I guess it depends on what one may consider is a significant proportion of people. In reading Dr. P. Behan's large summary study of MS research over the decades, he says that the benefit for MS patients from the CRABs is about 33% of the users obtaining a reduction of about 1/3 in the number of exacerbations. He also states that the placebo effect for these trials is pretty much a constant 30% and wonders if the CRABs even give as much an effect as the companies state.

Taking it a step further.....do MS patients really care that the number of lesions are dropping if they continue to become worse? I would think that symptom relief and general well being without disease progression is the prime goal and the CRABs, in my opinion, have really not done this to any meaningful degree. Like you said, the CRABs are a "crapshoot" at best!

I keep going back to a neurologist who was giving a research update on Betaseron a few years ago. He pointed out the results from people using the drug which pretty well mirrored the results of MS when left alone....frequent exacerbations and remissions followed by a reduction in these exacerbations followed by a general slow down in the disease progressing. When asked if researchers could state if Betaseron was responsible for the changes or simply the disease doing what it wanted he replied " we don't know!"




I suppose this is true but I would think the real test for the disease modifying drugs would be to relieve the symptoms and make a real dent in the progression of the MS....both of which don't appear to happen with the patients who use these drugs.




I agree with your questions but when I get to the NMSS's actions, we have very different views. It is one idea to be cautious when it comes to new treatments for MS but the NMSS seems to go out of its way to "skewer" anything that comes along that doesn't fit their line of thinking. I give you Prokarin and LDN as two examples. Their actions on Prokarin in the past and their recent press release on LDN indicate to me that they want no part in investigating these drugs and take steps to give them "bad press". I wish they would look outside the "envelope" which they haven't done in decades....and for decades the progress against this disease has been nothing short of abysmal.

Harry

Harry

Just can't resist posting my total agreement with your remark that people start looking outside the envelope when it comes to MS.

I read more that strikes me as potentially connected to solving the MS puzzle when I'm reading something totally unconnected to MS, but connected to my personal experience with MS or health in general.

I personally think a great deal could be gained if a multi-disciplinary group of physicians and researchers would step back and take a look to answer the question "What pieces of the puzzle are we missing?" (Boston Cure approach.) "Where can we attempt to connect some dots given our different areas of medical expertise that haven't been considered before?"

For starters of course, I'd definitely include neuroendocrinologists (personal bias) and, given that it seems at least one neuropsychiatrist thinks depression is part of the MS disease, just like everything else associated with it (i.e., numbness, tingling, etc.), I'd naturally be inclined to include a psychiatrist.

Just today I saw an article that states:



Of course what really struck me besides a myelin connection with MS, was the apparent parallel of this finding to what's happened in MS research (or not ) and the Australian study suggesting it's not auto-immune. The article goes on to say



To me this is just a single example that reinforces your remark that we need to look outside the envelope for answers to the MS puzzle. There may or may not be any information in this example that would help solve the MS puzzle, but I'd like to at least think the scientific experts have taken a good hard look at these findings asking, "Is there something here to help solve the MS puzzle or not?" They can do a yeah or nay and move on appropriately.

It's my personal impression quite a few pieces of the MS puzzle are still missing.

Sharon

Sharon and Harry,

That is so odd. I used almost the exact same analogy when submitting the additional research I had done recently to the NMSS and my PCP (i.e. the puzzle analogy, and how now it might be time to put it all together and step back to see what we've got.)

Harry, I personally say "right on" with your statement about "I would think that symptom relief and general well being without disease progression is the prime goal...."

I'm not against finding a cure, but I totally agree that in the meantime, we might need to dedicate a few more resources toward finding better treatments, too. I'm not saying they aren't trying, but why are so many options still being ignored?

That was the ONLY thing that bothered me about the response I got from the NMSS....the "narrow it down" sentiment. Narrow it down? That's hard to do. I took almost all of the prevailing theories that the NMSS funded researchers had hypothesized about and had published their recent findings on, and compared their individual theories with a drug that had either already been proven to provide, or showed indication would provide, the beneficial effects they were looking for. Now, let's narrow it down further? Why?

I'm sorry, but in my mind, I want to take the one medication (or the fewest combination of medications) possible that will likely improve my condition in more ways than just one.

Change the immune system from a predominantly pro-inflammatory TH1 to an anti-inflammatory TH2 in MS? Ok. Maintain sodium density, regulate ion channels and MHCII, decrease Ca2 influx, etc. etc. Ok.....let's put them all together and see what drug(s) we might ALREADY have that we can test that might help ALL or most of those things at the same time! And I did that! To my own shock!

So, we're out here. Working away. It's just hard to get noticed. I'll find my "champion" in the research field, yet. I'm not stopping until I do, and I only just got started. So far, none of the researchers who have looked at my information has said it has been flawed at all.

I will say, though, that even with the response from the NMSS, I do understand what they probably meant, due to the fact that with the prevailing strategies that are employed by researchers today, to pursuade for a clinical trial to be designed by one of those researchers, the material has to be narrowed down. And I will say the NMSS showed signs of trying to think outside the box by encouraging me to forge on and try to get the researchers in the field to engage in these important questions, etc., as I had proposed. I take that as a sign for any and all of us to do the same.

And that's what I'm doing. Perhaps the NMSS needs our help in putting a little pressure....just a little......on our neuros, etc., to think outside the box? If we are complacent and just accept what we are told and are recommended without questioning things in detail, how will we ever effectuate some active change in MS research?

Just some thoughts. I may be heading down the wrong road with my compilation, and right now, its effectiveness is anecdotal (i.e. me, myself and I), but I would think anything is a start. Where's the harm in looking at it closer or trying it? I could see if something is just thrown out there without adequate years of lab testing, etc., or sufficient substantiation of possible efficacy, and that's not what I'm suggesting. I did also provide substantial justification, at least, for why my suggestion might just work for MS. Some of these other theories or medications that come with substantive research, should be seriously looked at, also, in my opinion. No matter how "outside the box" they appear.

And besides, just how many "forms" of MS might we be looking at anyway? A lot of research is showing that there are different patterns of MS, and there won't even be a "one size fits all" type of treatment anyway.

And yes, I also agree with your statement, Sharon, about coming across information that is potentially connected to solving the MS puzzle totally outside of MS research. I found the same.

And I also found affective disorders and multiple sclerosis to be extremely similar in many ways. At times I'd begin to wonder just what multiple sclerosis really was (if that makes any sense), and if in finding a treatment for one, you might very likely find a crossover treatment for at least some forms of the other. And isn't that what IS being speculated on quite often? (As you noted, Sharon.)

I realize this isn't always a popular sentiment sometimes in some circles, but a "team" approach as Sharon has suggested might just be what IS needed right now in MS research.

Perhaps the fact that we all are beginning to expect more accountability for MS research might just get things really moving again. Wouldn't that be wonderful? So many people suffer, and it truly breaks my heart. I fear and feel more for others than for myself.

Deb