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Wojta
Member in Phase 2
| Joined: | Mon Jan 21st, 2008 |
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Posted: Mon Aug 11th, 2008 10:08 |
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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.
____________________
Lyme since summer 2007, 1,25D = 43.9pg/ml, 25D: 10.8ng/ml on 27Feb 2008, 8.7ng/ml on Jul 15 2008, Xyzal 5mg qd, covered up outside, NoIRs, no direct sunlight
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Dr Trevor Marshall
Research Team
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Posted: Mon Aug 11th, 2008 14:34 |
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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
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Wojta
Member in Phase 2
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Posted: Mon Aug 11th, 2008 14:51 |
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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 15:15 by Wojta
____________________
Lyme since summer 2007, 1,25D = 43.9pg/ml, 25D: 10.8ng/ml on 27Feb 2008, 8.7ng/ml on Jul 15 2008, Xyzal 5mg qd, covered up outside, NoIRs, no direct sunlight
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Dr Trevor Marshall
Research Team
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Posted: Mon Aug 11th, 2008 16:10 |
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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..
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Dr. Greg Blaney
Health Professional
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Posted: Mon Aug 11th, 2008 16:51 |
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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.
____________________
54 year old male, tinnitis, left bundle branch block, mild psoriasis, 25 D 33.2, 1,25D 57.7, Benicar 40mg q6h since Dec 25/04, started mino Jan 7/05, C Mar 19/05.
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Dr Trevor Marshall
Research Team
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Posted: Mon Aug 11th, 2008 17:18 |
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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
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dymi
Member in Phase 2
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Posted: Mon Aug 11th, 2008 17:49 |
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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 18:02 by dymi
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Lyme neuro joint/neck pain 125D62 Ph1Jan08 no non-MP meds 25D13(Apr08) NoIRs covered up outside low lux
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Dr Trevor Marshall
Research Team
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Posted: Mon Aug 11th, 2008 18:15 |
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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
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paulalbert
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Posted: Mon Aug 11th, 2008 18:30 |
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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.
____________________
Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Knochen
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Posted: Mon Aug 11th, 2008 19:46 |
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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" 
Last edited on Mon Aug 11th, 2008 19:47 by Knochen
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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caroldeleah
Member in Phase 2
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Posted: Tue Aug 12th, 2008 00:13 |
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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^^
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D14(10/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Phil Schoner
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Posted: Tue Aug 12th, 2008 05:00 |
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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
____________________
Phil Schoner, MP Support Spouse
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jcwat101
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Posted: Tue Aug 12th, 2008 05:15 |
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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 05:19 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Freddie Ash
Member in Phase 3
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Posted: Tue Aug 12th, 2008 12:44 |
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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
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Dr Trevor Marshall
Research Team
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Posted: Tue Aug 12th, 2008 14:17 |
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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...
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paulalbert
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Posted: Tue Aug 12th, 2008 15:46 |
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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 15:47 by paulalbert
____________________
Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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jlunn247
Member in Phase 3
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Posted: Tue Aug 12th, 2008 19:06 |
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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.
____________________
Sarcoidosis/lungs/joint pain TMJnerve pain 125D56 25D16 Ph1Mar07 ModPh2Jun07 Ph2Nov07 ph3Feb08 albuterol NoIRs covered up low lux stayin home.
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DNStog
Member Advocate
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Posted: Wed Aug 13th, 2008 03:12 |
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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
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Cocoa
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Posted: Wed Aug 13th, 2008 09:13 |
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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 09:15 by Cocoa
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CFS, POTS, rickettsia, tachycardia, 125D46, MP 8/07, ModPh211/07, florinef for BP, Lamictal, clonazepam, melatonin, NoIRs, limited outings covered up, low lux home, 25D12 Sept 07
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Dr Trevor Marshall
Research Team
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Posted: Wed Aug 13th, 2008 14:57 |
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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 15:14 by Dr Trevor Marshall
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