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Wojta
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Note to admin: If this forum is not a good place for this topic, please move it to an appropriate section. Thanks.

Hello Dr.Marshall and all,
as usually, I have a simple question, perhaps more :).

What is the future of the Marshall Protocol? Sorry if this question is too general.

Will there be any (and when) outcome, summary and evaluation of the results gathered from the cohort currently on the MP? I guess that would be a major proof to convince the doctors and medical "industry" about the efficacy of the MP.

With the currently available medications (abx, Benicar) is the current MP Ph3 combo the last step in the therapy, or is it possible to expect some changes of medications in the future?

Thanks and good luck to all.

Dr Trevor Marshall
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Wojta,
It is important to understand that the body is not going to change the way it works. Every month brings some new discovery (often by others) which confirms that we have accurately described the intraphagocytic metagenomic microbiota in Homo sapiens.

It is likely that some physicians will never understand what we have done. As the great physicist Max Planck once said "Science advances one funeral at a time." We need to understand that fact as we move forward, and not fight against it. Those who forget the lessons of history are destined to repeat them.

For centuries, science has been based on four steps
1. Advance of hypothesis
2. Proof of Concept
3. Independent replication of the Proof of Concept
4. Refinement and extension of the hypothesis

In the last 30 years an industry has sprung up which has tried to change this scientific evolution, and put in its place a system where anybody who has the money to do an "evidence-based" study can become involved in scientific discovery, not just the great minds of each epoch.

This movement has largely failed, because it has failed to deliver results. In just a decade we have seen the rise of 'alternative medicine' to the point where it has become 25% of the dollars spent by the public on medical care. Just think how much faster 'alternative medicine' would have grown if it had really been able to deliver on all the things it promised...

As the MP science moves forward, I see that it will be adopted by a growing number of physicians, and a growing proportion of the public. If it offers something better than either 'big M Medicine' or 'Alternative Medicine' then it will persist, and continue to grow

I am not concerned about how long it takes. I know we have beaten the Diseases of the Aging, and waiting for the inevitable change  is no longer a daunting prospect. Indeed, during that waiting, there will still be plenty of things to do, as we study the processes of aging itself...

Those are my expectations for the future of the MP :)
 

Wojta
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Dear Dr.Marshall,
thanks for your response. I agree with your statements, although I cannot say I got any answer for questions 2 and 3 :), which probably means it makes no sense to ask them again. My questions are in more technical then philosophocal way. I am not questioning the meaing of MP.

However, being part of the MP cohort myself and enjoying the benefits it brings (and the cure one day hopefully), I would assume that collecting the statistical data of the cohort might be a very valuable source of information and gives an extra dimension to each person on MP besides the curative effect we sense, unless we would learn some negative and/or disappointing facts.

With the statistics we would get in hands a proof which lets us say: Look, here are the numbers! Mainstream medicine and even many people will never be satisfied with patient success stories.

Last edited on Mon Aug 11th, 2008 18:15 by Wojta

Dr Trevor Marshall
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Wojta,
Some people will never believe the statistics they see in front of them. It wouldn't matter how much extra work we did, they would try to find fault.

At this point it is important to understand that we have produced a disease model, at the level of the Molecular Biology. That is a game-changing event. The statistics mean nothing ,except insofar as they support or negate that model.

As for your questions 2 and 3:
2. I don't believe in living in the past.
3. Of course there will be improvements to the therapy as the science becomes understood even more fully:)
 
..Trevor..

Dr. Greg Blaney
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Wojta

In response to question #2, I hope to compile results of MP treatment on a variety of conditions that I have treated over the last 3 years. This may be delayed for another 1 to 2 years as it often takes greater than 2 1/2 years of treatment for marked improvements to be seen. I, myself, though having experienced significant improvements earlier, have in the last several months enjoyed a level of health not experienced since probably childhood. I have been on the MP for 3 1/2 years.

As to the future, I believe further understanding of immune competency and clarification of other factors that affect the immune system including environmental, nutritional, toxicity and psychological factors will enhance the already impressive effectiveness of the MP. Further developments in antibiotics and angiotensin blockade may provide better tools than now present.

Finally, better understanding of the pathophysiology of the Herx reaction hopefully will allow for better control of the healing process and decrease the number of patients who drop out because of these reactions.

Dr Trevor Marshall
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I agree 100%, Greg.

People will also become more patient with the Immunopathology as acceptance gradually develops that we all have this microbiota, and it is the primary determinant of our quality-of-life, and death:)
 

dymi
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Hi Dr. Blaney and Dr. Marshall,

I am glad Wojta is asking these rather not easy to answer questions.

I agree very much that a lot work remains ahead  - specially for detailed understanding of the IP or "herx" reactions.

Did you think to cooperate in the future with some other research teams that deal with "combined protocols" to treat difficult infections (e.g. Dr. Stratton's team at Vanderbilt Univ. that is aimed mainly on chlamydial infections)? They use a term "secondary porphyria" induced by the treatment (due to pathogen death in liver).

The severe cases of liver damage (or even deaths) from the new generation of ketolides (Telithromycin) can suggest that the liver really may be heavilly infected by intracellular bacteria. Any opinion on this?

I just think if several teams work on same (or largely similar) subject with honesty they must arrive to similar conclusions sooner or later. Whish this would be truth throughout the medical and specially pharmaceutical industry... (I know it sounds too utopistic).

Best,

Petr

Last edited on Mon Aug 11th, 2008 21:02 by dymi

Dr Trevor Marshall
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Petr,
When the research teams you cited get to the level of understanding that we already have, I will be happy to learn from them. Meantime it is necessary for us to publish, and let them know why they are making errors in their logic about chlamydial infections, and about the effects of ketolides.

One European trial documented a case of Ketolide-induced-Lupus, so we clearly have Immunopathology involved with that antibiotic. I have known about that since before the antibiotic was approved for sale.

We have stayed away from Ketolides because we need to provide Physicians (and hospitals) with antibiotics to which our cohort has not been exposed, just in case some nasty bug evolves a resistance to Minocycline (which is highly unlikely, so don't worry about it).

Additionally, the antibiotics we use as the basis for the MP already work well enough. They produce enough Immunopathology to lay anybody low, and so we really don't need to add any antibiotics which might carry additional risk:):)
 

paulalbert
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I expect the model behind the MP to be accepted by the medical community in due time. Whether it will take the lion's share of researchers to exit the profession, as Planck predicted, I can't say. What I will say is that the quickness with which the MP starts to save and change lives is ultimately up to many of us.

Personally, I refuse to wait a generation for the Marshall Pathogenesis and Treatment (referred to as the MP) to take hold. This is not the time of Gregor Mendel!

We are living at a time in the history of our species when more people are doing medical research, attending medical conferences, and reading about medicine than ever before. This is a challenge but also an opportunity. Also, we have this thing called the Internet. If there is a tool more ideally suited for catalyzing medical progress, I can't think of one.

In many respects, the MP is a hard sell. Here's why:
1. At a time when vitamin D is promoted as a cure-all, we say it has the opposite effect.
2. The MP says you're infected by forms of bacteria (l-form, biofilm, etc.) completely unfamiliar to most people as well as their doctors.
3. The MP often takes three or more years.
4. Compared to certain other therapies for chronic disease, the MP is rather complicated. For example, isn't there a theory that people with CFS have the condition because their blood is too thick? If only....

This last point is important. In an ideal world, we would count on Trevor to talk to the journalists, to speak with fellow researchers, to explain all the nuances of the MP. Let's be honest: the guy is obscenely productive, but this is not sustainable. All of us have to contribute to success of this movement. Without being too dramatic, people's lives hang in the balance.

Those of you who are interested in how movements gain power should read Nicholas Lemman's latest essay in the New Yorker. Citing the thinking of a long gone political theorist by the name of Arthur Fisher Bentley, Lemman writes, "All politics and all government are the result of the activities of groups."

So then. Let's look at groups and some of the goals and objectives I propose Autoimmunity Research Foundation could or should have for each. Hopefully, this isn't so general as to be unhelpful.

Researchers

Goals:
1. Medical researchers are aware of the MP perspective on chronic disease and are able to interpret findings through the MP lens.
2. Medical researchers, especially post-doctoral and graduate students, engage themselves in work to test/extend/build upon the Marshall theory of disease.

Objectives:
1. Publish on topics related to the MP in the medical literature. There are a lot of papers to be written. We need to go on the record and explain what ARF has discovered.
2. Connect with graduate/post-doctoral students at conferences. Most of your researchers who have been in the profession for a while are locked in to areas of research, focusing on topics which are predicated on incorrect (and fruitless) assumptions.


Doctors

Goals:
1. Doctors can be counted on to be conversant in the subtleties of the MP including dosing, blood-work, and how to handle patient emergencies.
2. Doctors regard the MP as a first-line therapy for chronic disease.

Objectives:
1. Patients demand from their doctors therapies for chronic disease that work. Most MP patients are grateful that their doctor even does the MP, but that cannot be good enough. Dropping your doctor? Explain why: your lack of support for a cutting edge treatment is troubling.
2. Train and certify MP doctors. Doctors should have basic knowledge of the MP. The guidance given by the nurse moderators is essentially 100% coherent and predictable. It can be taught.


Media

Goals:
1. The major media - television, radio, newspapers, the Internet - successfully represent the MP view including:
  a. rates of chronic disease are rising
  b. vitamin D is definitely not helping
  c. mainstream medicine's quest to cure chronic disease has been fruitless and is fundamentally flawed
  d. the MP works

Objectives:
1. Patients and advocates contact the media offering timely and relevant critiques of news stories.
2. Patients and advocates pitch MP pieces suited for the venue.
3. Patients respond in third-party forums where the MP and related topics are being discussed.


Patients

Goals:
1. Prospective patients, especially those with minor symptoms, know that the MP is the first-line treatment for chronic disease.
2. Active/former patients are sufficiently informed to be able to fully explain the MP science to third parties.

Objectives:
1. Patients with sufficient cognitive health, learn about the science behind the MP. One place to start:
http://bacteriality.com/2008/05/07/mpintro/



Funders

Goals:
1. The Autoimmunity Research Foundation raises sufficient money to attend conferences and pursue projects which further ARF's mission.

Objectives:
1. Raise money from individuals.
2. Raise money from foundations.

Knochen
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Paul,

That's an excellent summation of the situation.  Thanks for putting that together.

Let's also remember that the elimination of Th1 disease will reduce the burden on healthcare systems to a huge extent.  That could be a major selling point, or it could be a source of threat to the entrenched powers that be.  If there were no Th1 disease, would we be be in a healthcare "crisis"? I think not.

In the meantime, I am going to work to make myself an example of the kind of results that await those who can take the responsibility to get well, despite the misinformed popular press. I can hardly wait for the first claim that "I wasn't really ever sick" :P


Last edited on Mon Aug 11th, 2008 22:47 by Knochen

caroldeleah
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Thanks everyone for this forum.  It contains precisely the information that I have been wanting to send our cousin who is a medical student in Ontario. 

Would it be feasible to give the description of an author posting as 'Medical Student'?  Just a suggestion.

^^Carol^^

Phil Schoner
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Paul,

I must add a fifth, and perhaps most daunting reason why the MP is such a hard sell:

The IP will discourage the patient, and they will come up with all manner of explanations that the pain is evidence that the treatment is not right for them.  They have a reaction to the MP meds, etc.  To put it quite succinctly, the cure is worse than the disease.

This will not be a factor for all.  Those who are facing a "difficult" prognosis, where nothing is working and their doctors have no answer other than palliative treatment, will embrace the MP.  Also, those who take the time and effort to understand the science will do well.  Put my wife and I in this second class.   Finally, those who catch their disease in the early stages will have a shorter row to hoe, and suffer perhaps less IP and for a shorter time.

August, 2008, marks our fourth year on the MP.  For us, it has been a test of our belief in and commitment to the treatment.  We remain firmly in the MP camp, but the path remains arduous.  Those bugs truly do work on your mind, and cause all kinds of questioning and depression.

We entered the MP treatment with the expectation that it could take 3 or 4 years to complete the treatment, progressing through the 3 phases of antibiotic combinations.  We now find ourselves in a stage where the immune system is kicking butt and taking names without the help of any ABX's at all.  We still suffer significant pain without any ABX's.  Bottom line: Entering our fifth year with significant RA pain with the nagging question: When will it end? 

So here's the deal:  We don't need any more evidence that the MP science is solid.  What we need is data that the treatment, based on the science, is not only working, but has been successful for people employing it.  By successful I mean that individuals we can identify have progressed through the treatment and are now living a normal life with no special precautions or meds. 

I was very interested in the initiation of this thread, and hoped that it would generate answers to these practical questions of ultimate treatment effectiveness.  Is it too soon to begin answering these critical questions? 

After 4 years on the treatment and still suffering significant IP, we need encouragement in the form solid data.

Phil

 

 

jcwat101
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Wrotek and Phil mentioned the issue of data.

As far as that goes, the data from the recent survey (or at least the answers to some of the questions) will be presented at the Portugal conference (and presumably will be put online).  It is going to cover about 20 diagnoses, mainly AI diagnoses (other than sarc) and Fibromyalgia.  We had to be selective in which diagnoses covered, due to time limitations.

We do hope to compile more data and eventually cover all the diagnoses with detailed data.  It turns out to be very time consuming, but eventually we hope to develop a system that will make it less time consuming for the handful of volunteers doing it.  And unfortunately, the few volunteers each have limited time.

A great thing about the MP is the diverse number of diagnoses that respond to the treatment and the numerous people on the protocol.  But that makes it more work, too, gathering and analyzing the data.

Joyce Waterhouse

Last edited on Tue Aug 12th, 2008 08:19 by jcwat101

Freddie Ash
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HI TO ALL

This is Fred in WV.  I want to thank all, Dr Marshall, Dr Blaney, & Paul for all the info that you have given me.  Last night I got a call from the leader of the Autoimmune Support Group that I go to and she wants me to tell the group more how Sarcoidosis works on us.  She also wants to know more about the Marshall Protocol.  I am printing this form to take so they all can read about this discussion.  I think it will help them all to understand it better.  Thanks again to Dr Marshall and all the staff here. 

Remember, we are all in this together and I am pulling for us.

Your friend in Sarcoidosis

Freddie

Dr Trevor Marshall
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Freddie:
Don't forget to tell them about the conference in Portugal:
http://www.marshallprotocol.com/forum39/12376.html

Phil said:
We don't need any more evidence that the MP science is solid.  What we need is data that the treatment, based on the science, is not only working, but has been successful for people employing it.  By successful I mean that individuals we can identify have progressed through the treatment and are now living a normal life with no special precautions or meds.
I am 60 in November. This year is shaping up to be the busiest year of my life, with no end in sight. The disease gave me a white beard and premature aging back in the 1990s, but the new hair follicles are now threading new black hairs among the grey of my beard, mustache and head.

IMO, As the early adopters get to their 70s and 80s, enjoying life to the full, it will be pretty apparent to everybody what we have done:)

I know that it is tough for most of us, who got so very ill before we started our recovery. In my case it was easier to pace my progress as I had the Xrays showing I definitely had the disease when I was 16, so I knew for certain how much of my life I had to retrace.

Additionally, knowing the molecular model intimately, and observing the progress of the cohort, has made the end-point (of cure) absolutely clear to me. Entering my sixth year I can do things I never was able to do before, and have no plans whatsoever to reduce the pace. In fact. I am increasing the travel to conferences over the next few months. I see that my real life is just beginning... I have never had so much fun...
 

paulalbert
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Another element of the MP future is the prospect of a new website. Though the WowBB board certainly is plucky,  a group of us are just now beginning to work on a site that has more... versatility.

The goals of this project are manifold: to systematically gather data for those of us who want to do research on the cohort, to allow doctors to monitor their patients' progress, to permit nurse moderators to better monitor critical situations, etc.

Like I said, this monstrous project is in its formative stages. We don't know when it will be ready. If you have thoughts about what a shiny new MP site simply must do, you can post in this thread or email me.

Paul

Last edited on Tue Aug 12th, 2008 18:47 by paulalbert

jlunn247
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The only way I would be able to benefit, from my mp future, would be to buy life insurance for friends and family making  me their beneficiary.
I cant wait to get back to scrubbing toilets and mopping floors till I am 75. And then retire on the policies I had cashed over the years.

DNStog
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Paul...a new website. WOW, what an undertaking!! I look forward to seeing it up and running. This board is great, but trying to get around it is intimidating to newbies...and some of us oldies. ;)  --Donna

Cocoa
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Hi All,

Thanks for this interesting thread.

Phil has captured an important point when he says:
So here's the deal:  We don't need any more evidence that the MP science is solid.  What we need is data that the treatment, based on the science, is not only working, but has been successful for people employing it.  By successful I mean that individuals we can identify have progressed through the treatment and are now living a normal life with no special precautions or meds.
I was very interested in the initiation of this thread, and hoped that it would generate answers to these practical questions of ultimate treatment effectiveness.  Is it too soon to begin answering these critical questions?


Phil, I don't believe it is too early to begin answering these questions, as data is simply a summary of findings to date. I look forward to seeing the information Joyce has developed as well as Dr. Blaney's when it's ready.

In the meantime, would anyone know if there is a data section on the site that summaries MP findings and progress to date?

If not, and in addition, would anyone have answers to some of the following questions:

1. What number of people are currently on MP broken down by disease diagnosis?
2. What number of individuals (by disease diagnosis) are reporting significant improvement?
3. What number of individuals have finished MP and are leading a normal life?

Thank you and best wishes to all, Cocoa:)

Last edited on Wed Aug 13th, 2008 12:15 by Cocoa

Dr Trevor Marshall
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Cocoa:
1. What number of people are currently on MP broken down by disease diagnosis?
Thousands. Most don't report to us. Those who are, or have been, reporting members of this cohort number 1015. They all have Th1 disease.
2. What number of individuals (by disease diagnosis) are reporting significant improvement?
More than 16%
3. What number of individuals have finished MP and are leading a normal life?
A large proportion of them. How many do you see posting with significant problems?


Cocoa,
1.  If you think that there is an alternative therapy which can offer you the same prospect, or better prospects, than the MP then please embrace it. We will dutifully mark you down on the study results as "lost to followup."

2.  16% is around the level at which a new drug is declared a success by the FDA. A physician considers a new drug a success if he gives it to 10 people, and it significantly improves the outcome of one. Read the literature (particularly the BMJ) -- this low rate is fully documented...

3. About half the cohort went well into Phase 2/3 and then stopped reporting. Many  pop up again, and we bump into others at conferences, etc. Some have failed. That is the nature of clinical research.

4. The MP has a 100% response rate. Or close to it. Everybody who gets Immunopathology is carrying the metagenomic microbiota. What you decide to do from that point is your choice. We offer you help based on hundreds of folk we have guided before you, including ourselves. We get no salaries, we are all volunteers. This whole effort will one day cease. It may be tomorrow, or it may be in several years time. We are already suffering from study-burnout as myself, and the other fully recovered early adopters, realize they have better things to do with their lives than post on a message board, debating the efficacy of a therapy which works, and for which there is no viable alternative:):)


ps: an example of an MP early adopter who has recovered her life is Dr Evelin Lindner. MD, PhD, PhD, who in 2006 won the Swiss Medal in Applied Psychology. A short bio is here:
http://www.humiliationstudies.org/whoweare/coreteamlong.php
As you can see, Evelin is pretty busy these days:):) In this article she is praising the MP (2/3 of the way down the page):
http://www.matoghelse.no/mer-hjelp-til-me-pasienter.520443-48598.html
 
 

Last edited on Wed Aug 13th, 2008 18:14 by Dr Trevor Marshall

Cocoa
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Hi Dr. Marshall,

Thank you for your response.

I am very happy with the MP and deeply grateful to you and the Moderators for its existence:). I believe MP is the best available treatment for my condition and that is why I have embraced it. This is indicated unequivocally in my thread and I have not expressed otherwise.

I have no interest in debating the science and nor am I qualified to do so, but I am, however, very interested in understanding it as well as I can and this does not mean that I believe there are better treatments available or that I want to cease MP.

If I can't find the answers to a question on the site, I hope to be able to continue to ask questions so that I can better understand MP and continue to act as an MP advocate amongst my contacts.

In terms of your response:

1. 1015 is a great number to have in the study and I'm sure there are many others who do not post or report.
2. 16% is a significant figure. I would assume this figure would actually increase as individuals progress through the Phases in time:).
3. I have seen a few individuals being told by the moderators that they are so well now that they don't need to post regularly. These individuals' progress is inspiring:).

The assistance offered on the site is exceptional and gratefully received by all. I am sorry to hear you are suffering from study burn-out though this is not surprising given the rate at which you are discovering new things about the science underpinning Th1 illness.

This will surely be no consolation for you, but I am deeply grateful for your tireless efforts and for your study site.

Thank you and best wishes to all, Cocoa:)

P.S. It's great to see what Evelin is doing. Unfortunately I couldn't read the second article - will rely on the assistance of a friend!
P.P.S. Paul, it would be wonderful for the new site if there was a Phase 2/3 Alumni site to reflect the success of individuals further along in the treatment.

Last edited on Thu Aug 14th, 2008 09:34 by Cocoa

Dr Trevor Marshall
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Cocoa said: "it would be wonderful for the new site if there was a Phase 2/3 Alumni site to reflect the success of individuals further along in the treatment"

Cocoa, there is a fundamental disconnect in comprehension between those in early phases (first three years) of the protocol and those well beyond that. Recovery from the Th1 microbiota is incremental. One doesn't merely 'regain' one's health, one finds out that they were never really healthy at all, that the state of true health is something quite unknown. Few try to describe this, they just start to live, and remain in awe of the experience:):)
 

Wojta
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2. 16% is a significant figure. I would assume this figure would actually increase as individuals progress through the Phases in time.

Cococa...Dr.Marshall wrote More than 16%...this can be anywhere between 16 and 100%. I believe it must be much higher than 16.

Cocoa
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Dr. Marshall,

Yes I have spoken to one MPer who has never felt so well in her life. If there are others like this (and there are), then their stories are genuine miracles:dude:.

Such stories are indeed awe-inspiring and surely this is reason enough to have a section for them on the site even if they're hard to describe. Our imagination can inspire us to wrap our minds around such possibilities.

Amy's story interested me in MP and ultimately stories like this could save lives. Share them with everyone I say!

Thank you for sharing part of your inspiring story above in this thread:).

Best wishes to all, Cocoa:)

P.S. Wotja, thank you for the important correction.

expate
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I am reading this thread with interest and do so appreciate the dialogue. 

I want to reply to Paul's succinct and helpful analysis of the future of MP in terms of goals and objectives.  I want to raise another area for you to consider (that Knochen touched on in addressing the role of the healthcare system) that is important.  That would be practical considerations for the future of the MP that tie into ease of compliance and economic considerations.

Because treatment takes so long, is difficult to learn, and compliance is impeded in so many different arenas of life (even for people like me who are not horribly symptomatic), practical support for people on the MP regarding lifestyle issues would be most welcome. 

I'm not exactly sure where I'm going with this, but ( and don't laugh), I mean, if I could go to the store and get MP brand milk, flour, bread, pasta, cereal, granola, soup, pasta sauce, shampoo, face cream, hand lotion, etc, my life would be so much easier and I would KNOW I was compliant.  Trying to read small print in dark glasses and remember all the oils, folic acid etc. that you can't have...

Another example is the pages and pages devoted to eye protection and complicated descriptions of getting blanks to have glasses custom made, etc.  I am lucky that I wear contact lenses so I can just throw NoIRs over them and get by without trying to figure out how to get prescription glasses made.  But maybe, through the new website) if you found a cooperating mail -in optometrist that we could use who would offer appropriate frames and lenses that work for the MP AND that takes vision insurance...

And the same for clothes, scarves, hats, gloves, and window coverings, and, and, and...  MP brand or endorsed, avaialbe through a "store" on the MP website would make things so much easier AND maybe raise funds.

IDK, but you have to REALLY want to do this to make it work.  I know it could be made more user friendly without having a degree in microbiology.

Thanks to all of you who work ceaselessly and for all you contribute,
Odette

expate
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I want to add that, given that we live in a capitalist nation, having a great idea/product/protocol isn't enough.  Look at Tesla vs. Edison. 

Paul Newman provides a wonderful example (good article on him in current "Vanity Fair") of how you can use commercial success through retail sales to fund good causes (Autoimmunity Research Foundation).  He has donated over $250 million dollars to charity through selling quality food products with high recognition name.

Even doing something on the new website like having discrete advertisements of products (like milk of magnesia or brand name ibuprofen) that are compatable with the protocol, it does two things: one, raises money and two, informs patients on the MP that those products are fine to use.

OK, just fantasizing here.

Odette

Last edited on Thu Aug 14th, 2008 18:51 by expate

Dr Trevor Marshall
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Odette,
We have avoided advertising to distinguish our work from that of the web-based quacks who sell all kinds of cure-alls. See, for example: http://stoplyme.com

As we gain mainstream scientific acceptance, we will be able to tap into the the business that is Medicine, but right now we are absolutely reliant on the donations from our members and their families/friends.

It is a chicken and egg situation - without the money we can't put on a good showing at the medical conferences, and without the acceptance we gain from the medical conferences we can't tap into the money flow. Sigh...
 
I have a plan for growth, and we are executing on it. Even if that may not be obvious, from time to time :)
 

zeno_the_stoic
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In regard to the donation situation...

Would you consider setting up a monthly Paypal option?  I could probably donate $10 or $20 on a recurring basis. 

I do that as a subscription to Leo Laporte's This Week in Tech. http://thisweekintech.com

Also Leo has a podcast called
Futures in Biotech http://thisweekintech.com/FIB


paulalbert
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If you want to participate in the discussion about how the process for redesigning the MP site, see this thread.

Paul

Last edited on Fri Aug 15th, 2008 00:11 by paulalbert

Joyful
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Hi Zeno,

You can make a donation any time by clicking the orange "PayPal Donate" button at the top of every page in the forum. Is there something more that could be done that isn't set up right now? I'm not sure I'm understanding your suggestion.

Dr Trevor Marshall
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Joyful, if you go to Leo's site he has regular deductions set up. I see what Zeno is saying, I just don't have time to chase it down right now and find out how we implement that.
 

expate
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If we're looking to the future of the MP, I found this NPR report VERY interesting as a paradigm for how to have a broader vision.  I know it's not in the same ball park, but it suggests a way of looking for commonalities that go beyond content into systems.  Symbiotic relationships.

http://www.npr.org/templates/story/story.php?storyId=93605988

It reminded me of an idea I heard of 11 years ago  while living in New Zealand about a universal electronic grid wherein areas of the globe where it was night could route electricity to where it was day in a continual cycle that would never stress a specific locale and thereby SAVE. 

How to piggyback... but turn the tables.  Take something that is entrenched and push it to a new conclusion.

Odette


Joyful
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Dr. Marshall,
I see. Just need more funding for staff! :)

Odette, Has your large thinking ever got you into trouble?
I like it! :cool:

expate
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Trouble?  We'll see.  So far, um, nope.  Haven't been arrested yet.  I just like to live life and think.  Maybe I'll get into trouble someday.  :shock:

:cool:dette

shegeek
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expate wrote:I mean, if I could go to the store and get MP brand milk, flour, bread, pasta, cereal, granola, soup, pasta sauce, shampoo, face cream, hand lotion, etc,

...

And the same for clothes, scarves, hats, gloves, and window coverings, and, and, and...

There wouldn't need to be a specific MP brand, or even specific claims. When enough of the general population comes to understand how our diets need to change (not that I'm holding my breath :?), the specific compliance factors will become selling points. (Like now, packages can say "low sugar" without saying "may help control diabetes.") When manufacturers start printing "Low D" on food packages and bragging about who has the lowest content, it will be a sure sign that we have Made It. It would start as a niche market when there is enough consumer demand.

The well-covered look could eventually become fashionable, with designers producing new types of sun blocking clothing (bodysuits, opaque body paints and so forth) that we are not accustomed to seeing now. Building on the SPF for swimsuits idea, we could see a total light blocking index for fashion fabrics. Also, magazines such as Sunset and House Beautiful might provide tips on elegantly dimming existing buildings and building new ones that follow the low light aesthetic. Again, it will start with niche markets, when enough consumers voice their preferences.

Another thing we might see someday is MP farms or spas, where those who need it and could afford it could go to have their compliance monitored by medical staff. They wouldn't need to be directly certified or carry an MP brand (they could be called "autoimmune recovery assistance", for instance), only the top staff would need to be certified or otherwise well versed in the MP.

Of course, this is all wishful thinking about the far future, after those of us recovering now have paved the way...

findinganswers
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Dr. Marshall,

How prevalent is the knowledge of how to do what you have done with computers and molecular modelling? It seems like the more prevalent this technology/software? is, the better understanding there will be for all.

Also, do you think other molecules that reduce inflammation (like some proteases) might one day be used with the MP? How hard would it be to study an enzyme's effect on the immune system through molecular modelling? It seems to me that the holy grail addition to the MP would be something that would help break down or neutralize the "toxins" produced during immunopathology, yet not inhibit the immune response. What are your thoughts on this, specifically regarding enzymes' ability to reduce inflammation, and the study of how they affect the immune system?

Dr Trevor Marshall
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There are very few institutions in the USA which are capable of doing in-silico work. A lot is being done Internationally. It will take a new generation of physicians, who are more capable with computers, before there is widespread understanding of the technologies we used to make our breakthroughs.

The concepts of modern pharmacopoeia will have to change. The pragma of "toxins" and "anti-inflammatories" are destined for the trash-heap/

We continue to look for ways to reduce the effect of the immunopathology, but I fear that this generation is going to have a tough time of it. Next generation, of course, will not be allowed to get so ill in the first place.
 
ps: I have done some enzyme modeling, it is difficult. I suspect that the panacea lies elsewhere than enzymes.
 

geneartemenko
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Dr. Marrshall said:"We continue to look for ways to reduce the effect of the immunopathology..."

It would be  correct  to say ( at least partially) that, to find the ways  to reduce the effect of the IP is equal to find the effective and secure ways  for detoxification?
Thank you,Gene

Dr Trevor Marshall
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No, the currently held concept of toxins is not well-founded in science. What is thought to be "detoxification" is just changing around the body's enzymes a little so the patient gets palliation. I am more interested in understanding the key pathways, such as the NuclearFactor-kappaB mediated cytokine pathway, and stopping the cytokines from being released in the first place.
 

findinganswers
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Dr. Marshall,

Thank you for your response.

I just thought if any of the inflammation from immunopathology is exacerbated by cellular/bacterial debree left over after bacterial killing/apoptosis, that a proteolytic enzyme that doesn't hinder the immune response might help. However, I don't really know enough about the immune system to speculate intelligently on the subject.

So please keep up the search for the Holy Grail!:):)

Over-Heated in PHX
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:)
Dr Trevor Marshall wrote: No, the currently held concept of toxins is not well-founded in science. What is thought to be "detoxification" is just changing around the body's enzymes a little so the patient gets palliation. I am more interested in understanding the key pathways, such as the NuclearFactor-kappaB mediated cytokine pathway, and stopping the cytokines from being released in the first place.
 


 
Wow!  Unfortunately I only understand some of the more complicated science at a very limited level, but this sounds like yet more relief for subjects/MP patients as such discovery will further limit those cytokine cascades?!?  This is wonderful!  I hope when some of my relatives decide in future years that this will be their best option,:):), that they will find it so much easier to cope (with work/etc).

I am astonished by the growth of I have seen here on the MP studycite just in the approximate 2 years I have been reading and participating. Prior to discovering the MP, I felt so absolutely hopeless day upon day, finding absolutely no real help available in the hands of modern medicine.  I felt my future was a total loss waiting to happen.  Now, I still have my moments while going around an IP bend, but when it lifts.. I know I am getting well and I am filled with hope.  Not only for myself, but for the future of mankind.  What greater gift I can't imagine.

As for myself, I have found that my ability to communicate effectively about the value of the MP grows with my first-hand experience and allows me to open the minds of many who have never heard yet word one about the MP until I started to explain.  I wasn't capable to do this in the early stages.  If people were disparaging or "polite", I'd just offer the webaddress, and then, move on.  Now, I'm very able to convince others by my own answers to their questions, I can see they are thirsty to know more.  I feel as people continue to recover and spread the word, there will just be a tidal wave, as in, "tides will turn"  and The Science will take hold.

Then, I visit the MP site, and I see such proof in the progress of those who are in the 3+ year category - doing so much! For instance, Amy and Paul now with their own websites featuring the MP and globetrotting to all the conferences!!  Just small beginnings existed two years ago in this respect.  So much growth and accomplishment so far!    I am constantly reassured by those who have blazed this trail, and eager to see each new development, recovery :), or discovery!  

Each contribution, each step, no matter what the size, is a victory, and a sign of what is to come.

Frankly, I can't wait each day to check on the sites and see if something new has evolved while I was laying around with my immunopatholgy going full force!  Seeing all that's been done, makes me feel like a bum!:( I know though, each recovering case is living proof,:D and still a contribution, for now.  We need to keep in mind, there's time yet.  Who said it?  "TTT.. Things Take Time"...  I found this here at the MP:


Put up in a place where it's easy to see
The cryptic admonishment "TTT."
When you feel how depressingly slowly you climb,
It's well to remember that
 Things Take Time.
    -- Piet Hein


 

As Paul mentioned above, (an excellent post/statement I must say!):
In an ideal world, we would count on Trevor to talk to the journalists, to speak with fellow researchers, to explain all the nuances of the MP. Let's be honest: the guy is obscenely productive, but this is not sustainable. All of us have to contribute to success of this movement. Without being too dramatic, people's lives hang in the balance.

Those of you who are interested in how movements gain power should read Nicholas Lemman's latest essay in the New Yorker. Citing the thinking of a long gone political theorist by the name of Arthur Fisher Bentley, Lemman writes, "All politics and all government are the result of the activities of groups."


Thanks for the link to that essay, Paul, and,if I may paraphrase, it will be,  the ongoing work of the recovering cohort to help push this program ahead.  Now, don't you youngsters who have the vision and leadership to "change the world"  go  off and turn into yuppies! ;) (ugg, Nothing  has ever disappointed me more!) You are doing the most valuable work there is!:):)


Thanks for reading, I just wanted to express my appreciation for all the incredible endeavors of this team and focus, for a moment, on all the progress that has been seen thus far.

 Still, :Pver-Heated in PHX..just one of the vast, and forever grateful, cohort.


Dr Trevor Marshall
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findinganswers wrote: a proteolytic enzyme that doesn't hinder the immune response might help.
Enzymes are ubiquitous beasties. Each performs many tasks, as proteins are so much alike, and it is not possible for a proteolytic enzyme to break down an individual protein without affecting many other proteins.

If you read up about the PXR receptor (the Pregnane Xenobiotic Receptor) for example, you will find it responds to big molecules (Rifampin) as well as smaller molecules (steroids). It is at the heart of the Vitamin D metabolism, yet it also is apparently responsible for dealing with bile acids, and a host of other Xenobiotics.

The one thing I have learnt from dealing with individual proteins and receptors is the sheer complexity of the human body, and how dominant is the law of unintended consequences. Homo sapiens works as the result of an intricate tapestry of interactions, the complexity of which Science is only now beginning to comprehend. It is tough to intervene in any of the pathways of that tapestry without unintended consequences, a fact to which any drug designer will attest:)
 

geirf
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Fascinating indeed,

do you tell us that grey / white hair  is or can be a Th1 disease ,

at least prematurely ...

I have thought  that grey hair could be an autoimmune reaction against melanocytes producing color to the hair... ?

 

Liopluridon
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I don't know for sure however I am 52, have white hair and diagnosed with sarcoid 5 years ago. My hair started slowly getting white at about age 19. But I still have a full head of it :)

eClaire
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I must have missed how this topic turned to hair color.  However, not long ago I read that being is significantly grey by 30 is correlated to later thyroid disease.  Sounds like Th1 to me.  Claire

NickBowler
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I thought this was an excellent New Year's message - we all have a part to play in in getting the message out there, and this is saying that it really does make a difference even if just improving your own health on the MP!

http://www.newscientist.com/article/mg20126881.600-how-your-friends-friends-can-affect-your-mood.html?full=true

Joyful
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Hi Nick,

Thanks for that great article link... very interesting!

Amy discussed the alternative hypothesis for obesity in her article here:
     Bacteria implicated in obesity.

NickBowler
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Ideas about evolution are evolving - rapidly !!! The resulting changes in perception should make it a lot easier for the scientific community to accept the MP science. Well, we can hope so anyway :-)

http://www.newscientist.com/article/mg20126921.600-why-darwin-was-wrong-about-the-tree-of-life.html

shegeek
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That is indeed an excellent article. It's the New Scientists' cover article for the month. Too bad it doesn't say much about the influence of the microbiota over the lifetime of the individual, but it still makes the point about HGT.

I'm hoping, since it's a semi-popular magazine, that it will help the idea of the microbiota and its effects gain acceptance with the general public.



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