Why ME? Why Now? Autoimmune diseases may be effected by external exposures and behaviours.
Patients with “autoimmune” disease face a daily dilemma concerning just how calm or severe will be that day. They understand that the disease mechanism is through their immune system which is supposed to protect them from infections and cancers is instead attacking their body. Why one day is good or another bad may be baffling; sometimes appearing to fit a pattern at other times appearing random. Sometimes a set of exposures which typically is ok is associated with a disease flare; and vice-versa.
We believe that among patients with ‘autoimmune diseases’ there must be real sets of exposures which contributes to exacerbating or calming the disease. These vary from one person to another and from one time to another.
This hypotheses is based on several factors: 1) the ANA test for autoantibodies to the patients’ own DNA actually is testing for antibodies to calf DNA and/or DNA found in a cervical cancer DNA that itself has human papilloma (wart) virus DNA and has been altered to assure the cancer cells multiple indefinitely. 2) DNA identifiable from its food sources does enter circulation in humans within one hour of a meal; in animals the DNA from food becomes part of the cellular DNA of the animal eating the food in multiple organs including fetal cells. 3) Some patients with lupus (SLE) who follow a vegan diet have their disease calm down or go into remission. 4) The DNA segments which test positive for ANA are also found in the EBV (mononucleosis virus), salmon, fowl, and several micro-organisms. 5) Common foods contained a substance (psoralen/furocoumarin) which enhances ultraviolet radiation (UVR) absorption in the wavelengths that are known to aggravate SLE. These include celery, lemons, limes, parsnips, carrots, dill, fennel, parsley, clover, lavender, figs, and perhaps vanilla.
Thus, we believe that there are groups of patients with similar ethnic genetic backgrounds taking similar medications, of similar age, activity level, accompanying diseases, environment, and stress levels who then have similar responses to these factors making their disease better or worse. New technology has been develop that can allow us to identify which individuals are within which of these groups and alert them to what constitutes the factors which help or harm them.
We are setting up a system that with the help of patients with autoimmune disease will help to determine which factors in which people will affect their disease activity and when by recording in great details how your disease activity is changing over time in association with 1) your lifestyle, diet and exposures (LDE), 2) your activities of daily living (ADL), and 3) your other health issues.
Our group from Ameriderm Research, University of Central Florida, University of Illinois-Urbana Champaign, University of Colorado –Denver, Clemens University will be using a new method to interact with patients call Continuous Quality Improvement Assessment (CQIA). CQIA allows researchers to interact with patients over a long term capturing much more detailed information than a simple survey as well as captures the changes in the disease (Outcomes) as is associated with the day to day changes in overall health as well as of the LDE and ADL of the patient. Complex Adaptive Systems methodology, a new method of statistical analysis, helps determine which pattern of LDE ADL and OH correlate with which Outcomes in which patients and when these affects occur. We are writing patient interactive forms (PIFs) which will be a continuous process where information will build on prior information. As patterns are identified, they will be posted for all to see and decide whether or not to make changes accordingly.
We will be setting up an internet link wherein patients can record on a PIF their current disease activity as well as ADL, LDE, other diseases, etc. They will then be asked to revisit the PIF monthly as well as whenever there is any significant changes, updating your information with any changes in your disease status, medical history, treatments, outcome assessments, etc. This will help us better understand why disease fluctuations occur and why they may be worse or better in different individuals.
The process will continue indefinitely; the more patients around the globe who record this information the more we will be able to identify the patterns that are helpful or harmful to which groups of people and when. We may add, edit and remove some questions as is needed to focus on what are the factors that matter. As noted above we will be posting what these patterns are as soon as we become aware of them.
Please respond with factors you believe may modulate the disease activity so that we can include these in our PIFs
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