The Ethos of LGD Roundtable

1) We like the scientific method. 

That means doing experiments, even if they are just with yourself and your ability to set controls is limited. It also means sharing your results and participating in what we call "Crowdsourcing Science". And of course, when we can get trained scientists to conduct research which leads to publication in peer-reviewed journals that is all the better.

We try to be ruthlessly honest and as objective as we can be. We recognize that we can fool ourselves and that our ability to accurately connect cause and effect are limited. That is why it's so important to have actual studies done and to use Crowdsourced Science with as large a database as possible

Although we can understand why, we're a little saddened by how often people suffering from these diseases have turned to things that are in no way supported by research or any scientific understanding of how the body works at all. In fact many of these "treatments" amount to little more than preying upon sufferers by understanding how the human brain works psychologically and how it can fool itself.

We understand why people have tried them because we've been in terrible shape ourselves and are still working every day to get better. And we know how overwhelmingly complex this can all be. But we have seen people become much worse and poorer by following what amount to little more than scams.

Rather than be frustrated by this, we realized we need to offer a better alternative. If it's too complex then what can we do to make it easier to understand? If there is no hope for getting better, then what treatments can we point to that do seem to offer some possibility of getting better?


2) We're talking about the human body.

That means the molecules in the human body, the bio-chemistry, and how they come to be there or not be there. How the systems within the body come to be disrupted and how they can be repaired is something that we are continually learning about.

But, we aren't talking about "energy healing" or "quantum healing" or the difference between Eastern and Western ways of thinking. We're talking about glutathione, methinione, cysteine and the best routes of administration for methylcobalamin, to name but a few.


3) We're going to be unfiltered and at times offer our impressions.

That means sharing what we think of various practitioners and folks working in the field as well as the quality of various protocol supplements. They're just impressions, they should be checked against your own impressions and those of others, but one of the ways we learn as humans is to talk about things and share what we think.

Offering only positive commentary paints only half the picture and these diseases are too serious to leave that much information out. Also, we have seen two separate online places in the LGD world where dissent and disagreement have been blocked by the people in charge because it might hurt their pocketbook. We find this kind of behavior deplorable and the antithesis of the scientific method. It deliberately blocks people from sharing information and learning more in order to safeguard the interests of one individual or organization.

We will share our impressions here and we hope others will too.


4) Cutting Edge Science vs Scams

The truth is that we can't always know the difference between these two, at least not initially. And in order to avoid being hypocrites, we won't be stopping anyone from bringing up whatever they like. However,  we will ask the same questions of an "ancient Nepalese tapping traditional therapy" as we will of "a new liposomal glutathione treatment": what are they doing bio-chemically? have any studies been done? if not can we do any objective Crowdsourced Science tests to test this? can someone explain the proposed way in which it would affect the body?

Sometimes ideas for new treatments really do come from obscure places and we're all for testing anything new that seems like it might be promising. But be prepared for actual studies on "alternative therapies" to be surprising and not in ways that can be expected (see study on "acupuncture" vs "sham acupuncture")

If what we are all interested in is actually getting better, helping others get better and furthering our understanding of these diseases and treatments then we need to be open to new ideas, but we also need to not be wedded to ideas if they are consistently dis-proven.


5) We have to try

A number of people we respect have kind of given up on the Scientific Method because it can never be designed well enough or because Big Pharma are mucking it up in order to generate bigger and bigger profits.

In a broad sense, they are right. Scientific studies can always be improved and many people have a connection to science which amounts to the electronics they use each day and the pills their doctor offers them. But that isn't Science, those are just industries that use Science to generate profit and to be fair, much of their Science works very well and is of significant benefit to us.

Science is just a method, a tool to use in trying to understand the world. People can use it and mis-use it for nefarious means, but they can also use it to discover all kinds of wonderful things that we wouldn't be able to understand otherwise.

Science is always questioning itself, it is always trying to improve and it is never satisfied with the previous results. Science doesn't stop, it keeps asking deeper questions, and sometimes goes back and questions the foundation that decades of work have been built upon.

In a practical sense we each have to decide what to put into our body each day and what to use and buy each day.  We can say "screw it - Science is never good enough, look at all the mistakes made by pharmaceutical companies, look at all the science that was later over-turned or shown to be falsified, i'm gonna just go with my gut and be done with it". And you know what, that isn't the worst way to live, there is plenty that can work just fine by entirely ignoring science or any study of any kind.

However, we are going to be so bold as to suggest that the LGDs are not likely to get better by just going with our instincts about this. The broken systems in our body are too complex.

I'm not a big fan of "muscle testing", but I suppose it can tell a person what they are thinking or what the muscle tester is thinking. But do you really think that we can instinctively tell the difference between a vial of methylcobalamin, cyanocobalamin, hydroxocobalamin or adenosylcobalamin being held in our outstretched hand? Would you like to bet your life on which kind of B-12 your body desperately needs by seeing if your arm will bend when the other person pushes down on it? If that kind of evidence seems important and sufficient, then this probably isn't the right blog for you.

On the other hand, if you want to continually learn, such as about how those different kinds of B-12 are used within the body, why one is notoriously cheap and can actually harm people, why one is stored in the body and can be used as needed and why one is the "active form" and ready to go right way but has a short half-life in the body and if you're willing to critically question things and face those critical questions yourself then this is the place for you.

Because Science is not perfection, Science is a commitment to always refining and improving our understanding and being open to being surprised when hypotheses do not turn out as we expect.

What is the purpose of LGD Roundtable?

A couple of different purposes:

1) People ask us (myself and Dorothy) about treatment and testing options and we wanted to have a simple url we could direct people to which would have that info.

2) We have spent the past 16 months researching in order to treat ourselves for MCS and we wanted a good place to link and reference all of the excellent research and contacts we have discovered. There is so much out there, but we want to be able to easily reference the best and most relevant things we have found.

3) We'd love to have a community of patients, doctors and researchers coalesce around this topic, so that treatment and research can continue to go forward. We've seen and become a part of some fantastic online communities (we'll list and link to each of them in a later post), but none that looks at the problem from this angle. Each disease has its own community or several communities, as do several treatment protocols, but noone seems to be grouping them together and from our research it seems like there could be tremendous power in sharing resources and research across several different disease which are LGD.

4) Our work is in mobile apps and online learning applications (eLearning). We work with Fortune 500 clients and large non-profits to create simulations for learning and we thought why not create a simulation of the body and what is happening bio-chemically with Low Glutathione Diseases and then share that. It'd make it easier for those suffering from these diseases to understand what is happening in their own bodies and it could help people educate their own doctors.

We also know from our work with clients that people often mistakenly disagree or agree on something, but when they see an actual simulation of the situtaion or process they are better able clarify what their disagreements are specifically or they find out they actually agreed all along. It's a bold hope, but we hope that by modeling these physical systems and processes with visual, interactive simulations we might be able to help scientists, doctors and researchers to clarify what we know, don't know and disagree about regarding how Low Glutathione Diseases work.

This blog will be a place we share those interactive simulations and visual representations of the underlying physical systems affected by LGDs.

What are Low Glutahione Diseases?

As with any broad category, this term is overly simple, but it's an attempt to group together a number of diseases that have a high degree of overlap in symptoms and bio-chemical markers within the body. Most notably a low level of Glutathione.

The cause and the exact nature of the diseases can be quite different, but the end result is the body is unable to create enough Glutathione or move it throughout the body. There is more to it than just Glutathione, but this is a key factor.

Some of the diseases that appear to fall under this category: Multiple Chemical Sensitivity, Chronic Fatigue, Fibromyalgia, Lyme Disease and Autism. There are more, but this is a good start.

Not surprisingly, we have seen treatments for one of these diseases also yield good results for some of the other diseases, B-12 shots for instance.

We'll add other diseases to this list as research makes their inclusion clear.