Sunday, December 4, 2011

Two items - Sunday December 4

A couple of items floated into my field of vision today. The first was an article from the Weekend edition of the Wall Street Journal. It is entitled "Citizen Scientists" with the subtitle - "Ordinary people taking control of their health data, making their DNA public and running their own experiments. Their big question: Why should science be left to the professionals?".

Somehow this sounded familiar.

The article can be found here. It was written by Amy Dockser Marcus. As I was reading it I was reminded of our own Citizen Researcher - Rich van Konynenburg.

Later an anonymous commenter (actually I see now that is was Cristina Montane. Thanks for that.) suggested looking at the youtube film "The New Biology". This video was made by Pacific Biosciences, where Dr. Eric Schadt is Chief Scientific Officer. Dr. Schadt holds a simultaneous position at Mt. Sinai Hospital in NYC as the Director of Genomics and Multiscale Biology. Incidentally, Dr. Schadt is the co-creative director and co-executive producer of this film. He seems to want to get the word out about this systems biology approach. Dr. Schadt is a man in a hurry. Check it out. This film includes many other fascinating voices.


  1. Have you seen

  2. What I find disturbing is the fact that Monsanto is using the same tech. There is a lot of talk out on the interwebs that it is the frankenfood that is causing various illnesses in the first place. I'm wondering when and if anyone will study the links between diet and illness in a meaningful way? If any links will be found? And if frankenfood is found to be a culprit, will that information be suppressed? Monsanto, for all its "we'll save the world" rhetoric, has been responsible for putting smaller farmers out of business through lawsuits and holding the monopoly (and hence setting the prince price) on seeds.

  3. Yes, Erich is certainly in a hurry. He doesn't appear to comb his hair or change his clothes. Go Erich!

  4. This approach gives me hope for the future. So pleased Dr. Schadt is interested in researching cfs.

  5. Letter for CFS researchers:

    I am sending this information because I think it may be relevant for everybody that is doing research on CFS.

    I am not sure if you read the last post of my blog, but I think it is important that you do:

    In summary, there are certain types of Hepatitis that go undiagnosed with regular serologies panels used for detection of the B & C virus. Examples of those are:

    -Hidden Hepatitis C
    -Mutant Hepatitis B from the pre core region S

    Molecular test very sophisticated have to be taken to detect those, I ALWAYS tested negative for Hepatitis B & C, and I was vaccinated for B, so I was non suspect of having it neither. Nevertheless the fact is that the vaccine does not protect you for this type of B virus.

    For this reason my liver specialist run the molecular blood work described in my blog, and I happen to have 13 copies of the B virus per ml, as the PCR DNA ultracentrifugation technique demonstrated. Because of that, I had done yesterday a liver biopsy to confirm the presence of a chronic B infection in my liver. I will know more in 3 weeks.

    The standard treatment for this is Tenofovir, and it comes to mind to think that people with XMRV treated with Tenofovir, might actually be responding because they might cary an undiagnosed B mutant B virus in the pre core S region. As I said, it has taken me 6 years of running from one doctor to another to find out, is not an easy diagnosis.

    I am not suspect of a wrong CFS diagnosis, De Meirleir, among 6 other specialist diagnosed me in 2006 with my RNASe-L, PKR, Elastase etc. Shara Mhyll also did with my mitochondrial failure. I also met the criteria of Cheney of diastolic disfunction of the left ventricle, Irsi Caixa also observed the same pattern than the CFS group studied with NK & CD8 abnormalities.

    I could go on and on...but what I mean with this is that this B virus may be behind many many CFS diagnosed patients, and Tenofovir may be doing the trick for that reason. Also, I read that GcMAF is a more efficient treatment for Hepatitis B than retrovirals, and that would explain why some patients are responding to this therapy.

    Bear in mind that the standard DNA testing for B & C virus are not as sensible as the one I did here in Spain, normally they have a limitation: (116 to 989,400,000 copies/mL).

    In my case, I only had 13 copies/ml, therefore I would have come negative in standard DNA testing. Please go through my blog to see the 6 techniques used for hep B & C detection that they used in NUCLEOTEX.

    I only tested positive in one of them with an extreamly low titer. This means that is not hard to miss the diagnosis with standard DNA testing. My doctor Vicente CarreƱo, has made a publication on "hidden Hepatitis C", and the laboratory that did my blood work is the only one in Spain able to do this molecular test.

    Either you go for biopsy directly, or try to contact NUCLEOTEX to see wether they know a lab in your area that goes this far in detection techniques...

    I hope it helps

    Kind regards from Spain