THE VOICE OF MANY!

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THE VOICE OF MANY!

Postby treez » Thu Oct 07, 2004 9:22 am

There has been much talk of antibiotics in this forum lately. I for one would really like to try that route after much consideration of all the facts, side effects, and personal experiences after following ALL of the posts here over the past months. There are several members who are actively participating in this "pseudo - trial". Regarding MS, I haven't read one that has had negative results with their personal trial with antibiotics.

Yes, there have been some undesirable side effects, even possible allergic - type reactions. Everyone is different and their body will respond differently to ANY compound they take. This is to be expected with a small percentage of any population.

That all said, where can WE, as a group, go with this? Obviously, no matter how you look at it, there must be some validity to antibiotic therapy. After much searching on the net, I only find a small number of trials or research that is currently taking place at a few institutions.

I guess the question of the day is WHY? What could we do about it? My experience, personally I mean.........my neuro. "won't consider it until he sees more studies"............that very well may be the approach the vast majority of them are taking. IF NO ONE BREAKS THE ICE - NO ONE WILL TEST THE WATER!

Again, as a large group (1000 + ) now, what can we do? Brainstorming is definitely needed!

ANYONE please throw your ideas into the pool, they are all good. Just remember, there are 1000+ of us, granted, not everyone is participating but I would think those of us who are willing, may be able to make a difference with the right people.

Large numbers of people tend to be heard. Just one only makes a whisper that is soon forgotten.

I may be rambling...but I sure am frustrated!!


Treez

P.S. I'd create a poll but don't know how!

It would be as simple as this: If antibiotics were being widely studied or an approved therapy, and you were given that option, would you participate?

YES or NO
Last edited by treez on Thu Oct 07, 2004 10:25 am, edited 1 time in total.
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Postby mscaregiver » Thu Oct 07, 2004 9:59 am

I have contacted major media and many other sources asking for them to review the antibiotic treatments and the system overall, so far, no responses, CBS,NBC,ABC,FOX, I have emailed all the investigative shows and some newspapers.

Yesterday I sent an email to a radio show that has used my artwork before, this show is huge, approx 20 million listeners per night, I am hoping for a response as I asked them to look over the situation and I requested two people to be considered as quests on the show, one with a broad range of knowledge on the big pharms, and one who is on the leading edge of the antibiotic treatment regimen.

And I will continue to do so, and I agree that a group effort in a situation like this is always good..

I am also considering a full page ad in a major publication, or some sort of way to bring attention to the situation as it stands overall, which in my opinion, is not a good situation..

Philip
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Postby Scaggs » Thu Oct 07, 2004 10:00 am

YES

Idea #1
Let's start by arranging a meeting between Dr David Wheldon and J K Rowling. Apparently she's a member of the UK MS Society, has plenty of Press coverage, and could probably persuade the UK Government to fund a trial.
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Postby treez » Thu Oct 07, 2004 10:07 am

Phillip,

How have you contacted the major media? Phone, E-mail, snail mail? I would consider following up your contacts with one of my own!

Way to go!!

Treez
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Postby Arron » Thu Oct 07, 2004 10:10 am

Philip, your idea of a full-page ad is intriguing. We would want to help-- maybe we can be the ones raising funds? We are beginning the process of getting formal non-profit status-- which is, ironically enough, an expensive one :(

Our opportunities with this community and this site are unlimited... watch out world, because we're going to start taking advantage of them and getting the word out! :)
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Postby mscaregiver » Thu Oct 07, 2004 10:46 am

Treez, I have used email so far, just finished another as a matter of fact, I simply went to the websites of these media companies and found the correct contact info and emailed a suggestion for a story or quests, with some brief information on background of subject or person/persons as quests.

Arron, soon as I gather some more info I will let you know, I worked in marketing for sometime and I am now thinking over the what-who-when-where areas, I am also thinking about contacting some of my former contacts with Nascar in reqards to awareness and what might be done in that area to being attention to MS and those who suffer.

Philip
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Postby OddDuck » Thu Oct 07, 2004 11:06 am

Here's what the Unions are doing. This is "Health Care Week". Please visit:

http://www.pacesteelalliance.org/paceal ... Action.pdf

Note the "Cut Drug Industry Waste" section near the bottom.

Hey, Unions are not all bad, huh? :wink: We hit 'em right at the legislative level.

Deb
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Postby OddDuck » Thu Oct 07, 2004 11:35 am

Oh, and the Jobs with Justice campaign just posted a "Special Report" wherein it talks about this, too. The full report can be found at http://www.jwj.org/community/healthcare ... TIONAL.pdf.

Here's an excerpt on what they say about the pharma situation:

Embargoed until October 7, 2004
WASTE NOT, WANT NOT
How Eliminating Insurance and Pharmaceutical
Industry Waste Could Fund Health Care for All

This report was released in conjunction with Health Care Action Week, October 3 – 10, 2004.
During the week of action, 11 unions and many health care reform organizations worked together with the Jobs with Justice coalitions to send a message to politicians and employers demanding health care reforms that would expand and improve Medicare -type coverage for all rather than undermine or privatize existing programs.
Jobs with Justice is indebted to Dean Baker and the Center for Economic and Policy Research for the research and data supporting this report’s findings.

Report funded by:
American Federation of State, County, and Municipal Employees, Association of Flight Attendants, Communications Workers of America, Jobs with Justice, International Longshore & Warehouse Union, National Education Association, United Food & Commercial Workers

"....While the costly administration of the insurance industry is one of the biggest single sources of waste in the U.S. health care system, it is not the only one. The United States spends far more on drugs each year – more than $200 billion in 2004 – than any other country in the world.
Furthermore, drug prices are the most rapidly growing health care expense. Drugs are projected to cost the country almost $520 billion annually by 2013, more than $1,700 per person. There is no reason that drugs have to cost this much. With few exceptions, drugs are cheap to
produce and would sell for a low price in a competitive market. Drugs are only expensive because the U.S. government grants the pharmaceutical industry unrestricted patent monopolies. These patent monopolies allow drug companies to charge as much as they want, without fear that competitors in the market will undercut their prices. The United States is the only country in the world that gives the industry unrestricted patent monopolies.

As a result of these unrestricted patent monopolies, people in the United States pay twice as much for their drugs as do people in Canada or other rich counties. Some drugs sell for prices in the United States that are three or four times as high as the price that the same drug – subject
to the same quality and safety standards – sells for in other rich countries. For example, a recent study found that Tamoxifin, a drug used in the treatment of breast cancer, sells for more than seven times as much in the United States as in Canada.7 There are huge potential savings from bringing the cost of drugs in the United States down to levels that are more in line with the costs elsewhere in the world.
There are two ways to reduce drug costs in the United States. First, the U.S. government could do what other governments do, and negotiate a price with the industry based on the usefulness of the drug. If we followed the model of Canada, Australia and other countries,
these negotiations could save us close to $100 billion annually, given current levels of spending. By 2013, the savings would be up in the neighborhood of $250 billion a year.7

6 This information and other numbers in this paper are taken from the Center for Economic and Policy Research's paper, "Insuring
the Uninsured: The Gains From Reducing Waste." This paper can be found at the CEPR website at http://www.cepr.net/publications/health_care_reform.htm].
7 See the price comparisons available at http://www.voiceoffreedom.com/archives/ ... costs.html .



The second way to reduce drug costs is to simply allow new drugs to be sold in a more competitive market, like any other good. The pharmaceutical industry claims that it needs patent protection in order to pay for research into new drugs. But more than half of bio-medical
research is already supported either by the government, through the National Institutes of Health, or through private non-profit organizations such as universities, foundations, and private charities.

The Free Market Drug Act, recently proposed by Representative Dennis Kucinich, would simply increase publicly funded research by a large enough amount to replace the research currently paid for by the pharmaceutical industry, thereby eliminating the need for patent
protection.8

If passed, all of the drugs developed through publicly funded research would then be sold in a competitive market, just like pencils, papers, furniture or any of the other things we buy. While drugs would still have to be approved by the Food and Drug Administration and meet the same safety standards as they do now, the government would not enforce patent monopolies that allow firms to charge exorbitant prices. By ending the patent monopoly that the drug companies currently enjoy, the savings on prescription drugs would be close to $120 billion at current spending levels, and would rise to more than $300 billion annually by 2013.

The savings from either buying prescription drugs at a negotiated price or allowing them to be sold in a more competitive market would go far toward paying the cost of covering the uninsured. ...

8 For more information on the Kucinich proposal see http://www.house.gov/kucinich/issues/fr ... rugact.htm
9 This issue is discussed in more detail in the National Coalition of Health Care's "Facts About Health Care,"
[http://www.nchc.org/facts/coverage.shtml].
...."
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Postby SarahLonglands » Fri Oct 08, 2004 2:22 am

Firstly may I make a suggestion? This is What Prof. Sriram found in his small trial completed in March this year:

Unfortunately this is a double blind placebo study, that is what the reviewers wanted to have done; now it has become very difficulty to recruit patients into a placebo controlled study since not many want to be in a placebo arm. This was supposed to be a two center study but South Western Univ at Dallas have dropped out because of their inability to recruit patients. They did not get a single patient into the study. I have therefore been scrambling to get other center and two others have agreed to get on. but they
have not recruited any patients yet. So that is where we are.


Well, who would want to be in the placebo arm? I wouldn't. In this instance it seems to me that the total insistence of a double blind placebo study is wrong. Now, who makes this insistence? The NMSS in the US and the MSS in the UK. In most trials the double blind trial is certainly the right thing to do, but surely in the case of using antibiotics normally prescribed for even something like acne, where it is often taken for years at a time, this insistence could be waived, because then one would find it suddenly easier to find recruits.

They now have the go ahead for a larger trial, but I can see the same thing happening. Sriram and Stratton, one of the microbiologists, must be pulling their hair out in frustration.

As for the UK, my husband, David Wheldon, is a microbiologist at a small regional hospital, without even a neurology department. We have someone come over from Addenbrookes in Cambridge a couple of times a week for an outpatients session. The neurologist who comes is an expert in epilepsy. David had occasion to write to a specialist in MS at Addenbrookes a few weeks ago, but he has yet to deign to reply. Perhaps neurologists think they are so superior to every other speciality that they needn't bother.

It seems to me that the way forward is maybe to try to get the double blind insistence loosened in certain cases by the two societies as a start, especially by the NMSS in the first instance, since most of the antibiotic research is going on in the US at the moment.

This all takes time, so in the meantime, a few more GPs need to be a bit more open minded about prescribing antibiotics, since Sriram also said in the same interview:

My hunch is that as the disease becomes progressive, number of organisms decreases and therefore they become more difficult to be tracked down by antibiotics. I believe this may be the reason that the relapsing remitting disease patients appear to do better than the progressive. Or they may need a different regimen of therapy. All this needs to be sorted out.


David has managed to persuade a number of local GPs and even some further afield that they should do this, including mine.

I had progressive disease of a few years standing with a serum level so low as not to be diagnostic. Luckily, though, I responded very quickly. Two years on, it might have been too late.

Sarah
Last edited by SarahLonglands on Tue Oct 12, 2004 2:41 am, edited 1 time in total.
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Postby OddDuck » Fri Oct 08, 2004 2:28 am

Hi, Sarah.

As you know, I just recently saw Dr. Moses (works with Sriram) and a co-worker of mine is a patient of Dr. Sriram himself. She has RRMS. Yet........Dr. Sriram HIMSELF hasn't prescribed any antibiotic treatment for her.

I'm thinking there is not yet enough clinical justification from their research yet. Perhaps the problem may be that if the researcher himself isn't prescribing minocycline to his own patients off-label, then why would a PCP do so? I'm thinking that someone high profile, such as Dr. Sriram, would have to take a visible lead in that area for other clinicians to follow suit.

I just find that interesting. IS their research panning out?

Deb
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Postby SarahLonglands » Fri Oct 08, 2004 2:51 am

Hi Deb,

I can't answer that one, I'm afraid. I do know that their research is working, but more I can't say. Its frustrating, that's for certain, since David will try the antibiotics then test later or sometimes not at all, because C Pn is so difficult to detect in any case. Maybe that is the difference between a neurologist and a microbiologist? One knows nerves and one knows germs. That boils down to my contention that various specialities should work together rather more.

Take care,

Sarah :?
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Postby OddDuck » Fri Oct 08, 2004 2:53 am

I'm not trying to debunk anything by any means, but here's something recent that leads me to believe there is even MORE caution being exercised (since March) regarding minocycline (the only point being that perhaps this is why patients are finding it so difficult to find anyone willing to take a chance of prescribing antibiotic treatment) - especially here in the States.

Dr. Sriram's recent study was to end on September 30, 2004. I would hazzard a guess that we'll be seeing the results in publication some time in the near future. The Vanderbilt lab also uses the autoimmune model of CNS demyelination experimental allergic encephalitis to develop therapeutic strategies. There have been recent theories that the murine model of MS is a better mouse model to use, and fits closer physiologically to the actual disease of MS. Of course, that in itself is part of the focus of Dr. Lucchinetti's research regarding different patterns of MS. From what I understand, the Mayo uses both models.

Deb
**********************

Exp Neurol. 2004 Sep;189(1):1-4. Related Articles, Links


Rise and fall of minocycline in neuroprotection: need to promote publication of negative results.

Diguet E, Gross CE, Tison F, Bezard E.

CNRS UMR 5543, Universite Victor Segalen Bordeaux2, Bordeaux, France.

Initial studies conducted on the neuroprotective effects of minocycline, a second-generation tetracycline, in experimental models of neurodegeneration gave promising results. However, more recently, minocycline has clearly been shown to have variable and even contradictory (beneficial or detrimental) effects in different species and models of neurological disorders, and its "neuroprotective" mechanisms remain to be clarified. Although its anti-inflammatory properties are likely to contribute to its neuroprotective effects observed in several animal models, a body of recent evidence indicates that our community should proceed with caution in the clinical use of minocycline for central nervous system disorders.
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Postby OddDuck » Fri Oct 08, 2004 2:55 am

Sarah,

I totally and completely agree with you! I (laughingly) questioned the NMSS the other day about whether they have any innovative ideas on how to get doctors/clinicians, etc. to work together and consult! HAH! I mentioned how if I've ever had to draw upon my team-building skills, it's been in the last year!

:? :)

Deb
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Postby OddDuck » Fri Oct 08, 2004 2:57 am

Oh! That reminds me, when you mentioned microbiologist, I only recently realized that the Director of Research Grants at the NMSS has a PhD in microbiology! I was a bit surprised! I considered it a good thing, though. And you know me............as I always say..........."very interesting"!

Deb

Oh....wait...no, I lie. He has a PhD in molecular biology! Sorry! LOL That's more genetic/DNA related. Never mind!!
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Postby finn » Fri Oct 08, 2004 4:07 am

Sorry, time to leave the board.

-finn
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