In the last few years or so, there has been several citizen-science initiatives. Often these have been kick-start events
One of the earliest and most successful ones was 23 and me, which was funded by one of the co-founders of Google to help with DNA research on Parkinson’s Disease. The tests were done for free to Parkinson patients to get the data needed to do analysis. They have some 400,000 subscribers and have over $52,000,000 in financing. They originally charged $999 per test and have since moved the price down to $99 while increase the number of SNP (dna fragments) by a factor of 10 — effectively a 100x better deal. I have had me DNA done by 23andMe.com. The results are downloadable and searchable: this allows patients or physicians to compare patients DNA with the latest research.
Gut Bacteria Testing
Several kick-start or equivalent opportunities for people to find out more information about their microbiome or gut bacteria. Like DNA testing, they have great potential for learning more about risks or conditions that you have. I suspect that we will, with enough data, find that certain strains of bacteria results in certain symptoms in the CFS patient, including who may have MCS, IBS, pain, etc.
We are not there, to get there will likely need at least 500 CFS patients to be tested — as well as their symptoms and labs entered. There is a good chance that 5000 or more may be needed — why? because there are so many strains and species of bacteria in the human gut. With that said, I should review the main players
Funds raised $284K (1/200 of 23 and Me), with ~1900/6000 samples most at the lowest level of information. Costs from $99 to $25,000 depending on level of testing. There has been privacy issues raised by some and the man behind it all states “Is this going to diagnose your disease? Absolutely not. Is this going to change your life? You know, maybe, maybe not. “[NPR] which causes to wonder why Dr. Mercola recommends it. Getting a list of “dominant microbes [families]” in your gut has limited value
What you will get is details on the families (not species, nor strains) such as shown in this document. This project grew out of the Human Food Project(who has the same head) and most of the emphasis is on how diet changes the distribution of bacteria families.
IMHO: this approach has great potential if properly backed (say $10 – $30 million dollars with an initial target of some difficult disease (UC, IBS, Crohns, CFS..)) with all of those with a diagnosis being given a free kit — which is what happened with 23andMe. Equivalent (and probably better for treatment plans) work was done in the 1990’s by Butt and reported here. His sample was 27 CFS patients that meet a CFS criteria. The problem with citizen science with CFS is that many people believe they have CFS because they cannot afford the medical cost to exclude other conditions (and thus have a neglected treatable conditions) or have chronic fatigue (but not chronic fatigue syndrome) — this generates a lot of noise in doing analysis of the data and often will push sample size requirements to be 10 or 100x bigger than needed.
Testing via conventional medicine
Medline provides a nice (technical) summary of the challenges in this article.
Expect limited if no zero treatment benefit from AmericanGut test (at least not more than just accepting Butt’s results as applying to you). You will get better knowledge of gut bacteria. It may encourage you to alter your diet (which as a CFS patient, you should be doing already).