Q&A with the OMF Severely Ill Big Data Study

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The Open Medicine Foundation’s big data study on severely ill patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an exciting new project designed to uncover biomarkers by studying the sickest of the sick. Want to learn more? Your pressing questions about the study are answered below.

 

How long will it take to do the study?

Once fully funded, it should take about 12 months. It may take longer to complete the Big Data analysis.

 

What diagnostic criteria will be used to select patients?
This will be determined by prominent ME/CFS physicians. We will be testing the severely ill first and then the less severe.

 

There’ve been similar studies before. What’s new about this one? 

For the first time in the history of this disease, a comprehensive, “Big Data” analysis will be performed on severely ill ME/CFS patients with the goal of finding one or more sensitive and distinctive molecular biomarkers. Leading world-class scientists will put their minds together in open collaboration.The Open Medicine Foundation’s scientific advisory board has three Nobel laureates, six members of the National Academy of Sciences and top world-renowned experts working together to crack this thing wide open.

 

What kind of treatments/biomarkers might come out of the study?

When biomarkers are identified, patients will finally be able to validate their illness, and be diagnosed accurately and quickly. Biomarkers will also be used to find effective treatments, and to objectively measure outcomes in clinical trials. Please see the study details on our website for the list of tests (possible biomarkers).

 

In the description you write that you want to study 40 patients at a cost of $1 million. This crowdfunding campaign is designed to raise $375,000 to fund 15 patients. Will the data from this first phase of only 15 patients be useful?

Absolutely. Since we are testing the severely ill, the biomarker “signals” will be the strongest. In this type of Big Data study, relatively few patients may be needed in order to find a common link with this molecular deep-dive approach.

 

What if we don’t reach the $375 000 target? 

We will include as many patients as we can with the money received. We do not have to wait for the full amount to begin the study. We already have $100,000 towards this study — enough for four patients — and so preliminary work has already started and if all goes well, the testing of patients will start in July. For each $25,000 that we raise, we will be able to add another patient.

 

Is $375 000 expensive for this kind of study? 

Good question! But this is the least expensive way to do this level of Big Data analysis because we are not hiring scientists or purchasing equipment; we are paying for the lab tests and doing the studies at existing labs that have developed these tests.

 

Won’t the government fund the study? Or a private donor? 

We will continue our efforts with the government/ NIH but private funds will get this study started and moving forward fast. We need everyone to help us increase the number of patients and be part of this historic project to find biomarkers.

 

Does this study involve animal testing?
No animals will be involved in this study. This study consists solely of testing blood, urine, saliva and fecal samples from human patients.

 

Can I donate via PayPal?

Yes, you may donate via PayPal, credit or debit card, electronic wire transfer, check/cheque, stocks, or company matching donation.

 

Please donate to the END ME/CFS’s ‘Big Data’ comprehensive biomarker study of severely ill patients.

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