Target Communities: PA and VBD
Surprisingly, the scientific and medical communities seem to have largely neglected symptom severity in their research concerning assessment of 'recovery' from vitamin B12 deficiency. Rather, studies seem to generally concluded that a patient is recovered if, for example, B12 blood levels rise to 'acceptable' levels. While that assumption may often be valid, it does not always seem to be true. It is discrepancies like this that we try to tackle at Mendus, and specifically with this study.
Who can participate
Anyone with B12 issues can join us. That includes long-time B12 patients who have undergone treatment for years, newly diagnosed individuals or those seeking medical advice for suspected B12 deficiency and even those who are self-diagnosed.
How Does it Work
After obtaining an anonymous ID you begin by completing your baseline measures. This includes questions about your current treatment regiment (what you take, how much, etc) and your symptoms. Then, the next time you have an appointment with your doctor (for your B12 condition) you can return to the study pages and once again rate your symptoms and verify your treatment parameters. Finally, after your doctor's visit you can enter any lab test values that were taken during your appointment (that you're willing to share (e.g., serum B12)). Thus, we'll be creating a clinical picture where we can look for patterns between changes in symptoms, treatment and your test scores. You'll be able to see all the data you submit at any time, and could also download it if you wish.
After a few visits basic patterns may begin to emerge. For example, perhaps your serum B12 levels will correspond with how good or bad you reported feeling... or maybe they won't. If enough people get involved the data will be pooled allowing statistical analysis of some critical questions. For example, is it safe for doctors to rely on blood levels of B12 to determine whether the current treatment regiment is adequate? The existence of 'inactive' B12 suggests it may not be safe.
Why Are We Doing This?
We're doing this for a couple reasons. First, there are a lot of people upset in your community, about a lot of things, and the potential for neurological damage if some of these concerns are true is very serious. The medical community seems to consider the treatment of B12 deficiency a closed case and therefore not much new research is likely to be initiated or funded. Mendus.org was setup for exactly this type of situation. It allows patients to work with a trained scientist to get their own answers, in a more scientifically valid way.
Toward that end, we're building an anonymous database which will allow us to address questions that arise in many of the B12 deficiency support groups and explore issues where patient views seem to differ from the medical literature and professionals. It is hoped that we can address some of these issues empirically and ultimately help optimize treatment for all patients. With a little luck our results could be shared with the scientific and medical communities.
An additional benefit is that we've made it possible for you to see the data you contribute (or download it) at any time. This may come in handy for your check-ups. Rather than rely on memory of how you felt you'll have an exact record of it, along with how much B12 you were taking and how your test scores looked.
Who is behind the project
Mendus.org is an independent, online, research platform run by a neuroscientist (Joshua Grant) who created the site to try to solve his own issues with chronic fatigue syndrome. Dr. Grant was asked, by Pat Kornic, to extend Mendus to include a community for vitamin B12 deficiency patients, to explore some of their treatment-related concerns. The two have worked together along with others from the B12 support groups to develop the project.
Is it safe to share my data?
The honest answer is that there is no such thing as completely safe data online. We take a different approach to keeping you safe. We deliberately avoid asking for a lot of personal identifying information. We never ask for names or addresses and if you're concerned you can even register without an email address, though we don't recommend that. Can your data be accessed? Yes, probably, otherwise it would be difficult to allow anonymous users to see their own data. But, importantly, if there is little information in that data which could be used to identify you, then your risk is minimal.
Mendus is currently run by a single person (Joshua Grant). You can contact me anytime and I'll personally reply to any questions you may have. My work here is completely voluntary and takes a heck of a lot of time. You can support the cause (for free) simply by getting to any online shops you use through our links.
How to Download Your Data
Type your ID in the small box (e.g. PA123456)
Click "Create Download URL"
Copy the text in the long box
Paste that into the address bar of your internet browser
It may take a few minutes but a text file will automatically download.
The downloaded file can be opened in many programs including Microsoft Excel, Google Sheets, SPSS and any text editor. All of your data from THIS study will in the file. To get your data from other studies you will need to follow the same procedure on that study homepage. If you download your data again in the future any new entries will be added to the older ones. That is, you'll always be downloading your entire dataset.