This Is MS Multiple Sclerosis Knowledge & Support Community

Ah! I didn't realize that, Finn. Good point.

You know, (and not to be negative by any means), but with all these contradictory findings, it makes you wonder if anybody will ever agree on ANYTHING regarding MS. You know? How frustrating!

How can or do you measure "progress" then in MS research?

Deb

Sorry, time to leave the board.

-finn

More unbiased studies? More reliable documentation of treatment results? More communication between researchers?

Finn, yes - yes- and yes, as always, you are so correct on all three, especially the communication area, the bane of all is communication or should we say lack of, in any area of daily activities it is the lack of communication that causes most problems.

In this supposed "high tech" world we live in, information is as stagnant as it ever was, I think as everyone visits their doctor and mentions some new concept or theory and the medical professional states "I have never heard of that", we all wonder why not, as countless articles in medical journals have discussed it, why? as you said, more communication is needed and more medical professionals need to make sure they are more involved in keeping up to date.

Even if the information is antidotal, it is still information that "may" be extremely valid in another study, this small bit of info may be the key to another study, another formula etc etc..

But with the mind boggling amount of information available now, most of it stays in transition or is overlooked or corrupted by various external properties.

One can find endless websites devoted to MS and other diseases, untold numbers of technical and medical forums and websites with complex, technical information posted (that most need a magical decoder ring to understand), one would be inclined to suggest a central data base, specifically for each situation or disease , where all info can be kept and then accessed for review, of coarse this would take terabytes of space and then we have the pesky problem of getting people to actually use it, and then of coarse the interpretation of the data and how that is applied.

Perhaps we should look to the past and have a world wide network of tin cans connected by string and pass information across that network, we might be surprised how similar it is to what we have now..

Philip

I don't want to turn out to be the party-pooper, but I do want to sound a note of caution here. We know for a definite fact that the regimen of antibiotics as suggested by Dr. Wheldon works in the case of MS. However, the human body is a vastly complex creation, and there are all sorts of possible side effects.

There is a very good reason for clinical trials and the science behind testing drugs: it's necessary for our own safety. Just because when we or our loved ones go in and try to talk to a specialist and are told that we can't take the medicine because there are no clinical trial supporting it: all of this does not mean that the reasons for having clinical trials are themselves flawed.

We need to push into several different directions. As much as raising the general awareness of specialists in this field, we also need to continue to share information about what happens during the course of taking these antibiotics, both good and bad. This is imperative. The only real difference between a quack's treatment and a treatment that works is knowledge of what can happen and why it happens.

Sorry, time to leave the board.

-finn

here are the results and conclusions from the study finn pointed us to. It does look like the antibiotics do something positive, but this is such a tiny study it's almost moot to look at it for any sort of guidance.

RESULTS: Due to problems with recruitment, the study was stopped after the eighth patient exited the study. Data on 4 patients on treatment and 4 on placebo were available for analysis. No significant difference in either the volume or number of enhancing lesion on brain MRI’s was seen between the two groups. There was a trend for an increase in the number and volume of lesions in the placebo group as compared with the treated group between month 9-14. A significant decrease in parenchymal brain fraction volume occurred in placebo treated patients from the pre to post treatment images (p<=0.001) that was not evident for those on antibiotics. Three of the four patients on antibiotic therapy, cleared the organism from the CSF by month 12 while in the placebo group one patient cleared the organism spontaneously. There were no clinical changes in either group during the period of study. There were no adverse events in patients receiving treatment. CONCLUSIONS: The pilot study suggests that anti chlamydial antibiotics can clearC. pneumoniae from the CSF in 3 of 4 patients. The relative stability of brain parenchymal fraction in antibiotic treated cohort when compared with the placebo group, must be viewed with caution, due to the small number of patients in the study. These observations suggests that a larger study to examine the efficacy of antibiotic therapy in MS is warranted Supported by: National MS Society

Sorry, time to leave the board.

-finn

Hi Finn,

on the contrary I would think it contributes to it. the antibiotic group did "better" than the placebo arm (though not in all parameters, but they certainly did not do worse). However, my point was that it was too small and too short to draw any serious conclusions.

Sorry, time to leave the board.

-finn

let's say it's a step in the right direction

And yes, it has been too long-- we are all anxiously awaiting another Finn article...!

Hey All!

Many good points have been raised regarding this subject. That is EXACTLY why I started this thread.

TOO BRAINSTORM IDEAS TO BRING IT ALL TOGETHER!

Some of these posts get kinda' off track but subsequent posts came back.

My theory for what it's worth.

I feel our answer is already out there, many many studies..and trials I've read are either beating a dead horse or going much too scientific in-depth.

The comparison I have verbally made to many friends is.............. " the answer is already out there............it may be likened to finding 10 needles in 100 haystacks".

mscaregiver has the right idea and also hit the problem very accurately in a previous post in this thread:

One can find endless websites devoted to MS and other diseases, untold numbers of technical and medical forums and websites with complex, technical information posted (that most need a magical decoder ring to understand), one would be inclined to suggest a central data base, specifically for each situation or disease , where all info can be kept and then accessed for review, of coarse this would take terabytes of space and then we have the pesky problem of getting people to actually use it, and then of coarse the interpretation of the data and how that is applied

Again I venture to ask "Any ideas how we, as a group could possibly bring it all together"?

Treez.............racking his brain too!

Again, I go back to the tried and true. Utilize what is ALREADY out there for us to communicate through/with in order to make a difference.

Join the legislative leaders, back their efforts on our behalf. Many have shown that they not only believe us, but are actually doing something in areas we could reach also, if we join in.

Advocacy groups are already formed (as I posted a perfect example of) and are trying to engage additional people to join in the effort(s). (Some of which I posted as an example. That goes with this thread in a direct manner.) Many are seeing and speaking of the same things we are posting here, AND are making progress.

The leadership is already in place in many areas. I see the problem as there being too MANY groups being formed as small factions, instead of joining what has already been started. The bigger the numbers, the more power to be heard we have.

Another large problem that I see, is even getting something into clinical trial in the first place. Through my attempts, I have found out that the only way to do so, is to engage a clinician/researcher in the field, who has the connections to apply for funds or grants from various organizations in order to perform the trial. That's a big hang up. I've had MANY who said my research was TERRIFIC, BUT.........like the NMSS said. I need to keep going until I can find and convince the right neuro/researcher who will make application for research funds. Not just anybody can get the funds.

Oh...never mind. It's been a long day, and I think I'm tired.

Deb

Ok......one last reiteration. I found the Free Market Trade Act as something interesting and worth looking at closely. Note how it affects RESEARCH. This is the Act being introduced by a Senator from Ohio. Might this help to open up research avenues currently closed to us (those of us who want someone to take a REAL look at such things as LDN, etc?):

"....In September 2004, I will introduce the Free Market Drug Act, which would effectively result in most major drugs being priced as generics by removing patent protection on pharmaceuticals produced with public funds. Furthermore, the bill would fund the world-renowned National Institutes of Health (NIH) to control and perform the research and development (R&D) on pharmaceuticals in the US. Some funds would be used to expand NIH's capacity to do R&D and other funds would be granted to pharmaceutical companies and universities who already have the infrastructure to do that research. But whenever a drug developed with public funds was ready to be marketed, instead of giving a single drug company the exclusive right to manufacture it, any qualified entity able to get FDA approval could manufacture and distribute it, introducing free market competition. Another advantage of this bill is that pharmaceutical companies would not make the decisions about which drugs to research based on which had the highest profit margins. Instead, some of the best scientists in the world at NIH would make that decision based on the greatest public health need.
In addition to enormous financial savings, the Free Market Drug Act will lead to the development of better drugs and better health care, since more openness in research will speed the research process. Furthermore, replacing government patent monopolies with a competitive market will eliminate the incentive for researchers to conceal and even distort research findings. The distortion and misrepresentation of research findings that results from the incentives created by government patent monopolies is a serious problem that has become a major concern of professional medical journals. ...."

Have a great night, all!!

Deb

In order to put Dr. Sriram's study into context, it is worth while to read the following page:

http://www.albany.net/~tjc/parenchymal.html

It details another study of how useful Avonex is in preventing brain shrinkage. The results from the page are as follows:

MS patients had significant Brain Atrophy that worsened during each of 2 years of observation. In many patients, Brain Atrophy worsened without clinical disease activity.

Baseline clinical and MRI abnormalities were not strongly related to the rate of Brain Atrophy during the subsequent 2 years.

Treatment with Interferon-ß-1a resulted in a reduction in Brain Atrophy progression during the second year of the clinical trial.

Then examine what Dr Sriram said about his own results:

A significant decrease in parenchymal brain fraction volume occurred in placebo treated patients from the pre to post treatment images (p<=0.001) that was not evident for those on antibiotics.

This is a very interesting result because there is usually no decrease in brain volume for healthy people, and there was also no decrease for MS patients who were taking the antibiotics.

It is a great pity, as Arron points out, that the number of people in the study was so small and that it was terminated early.

Sorry, time to leave the board.

-finn