Article Index

IT, social information, and bio tech revolutions influence medicine

Dr Andreas Kogelnik, (Stanford, USA) founding director of the Open Medicine Institute spoke of the changing world involving the IT revolution, the social information revolution  and the biotechnology revolution. This has all changed the way we look at medicine. He describes this as a health/disease revolution. He provided some graphs of how things have changed. e.g., the number of processors on a chip has doubled every 18 months since 1981, while the cost per megabyte is decreasing from $700 per megabyte in 1981, to less than 2c per megabyte now. There are 2 cell phones for every individual in the USA. There are now many wearable devices for evaluation of physiology. In POTS patients this can include continuous measurements, so that it is easy to document activity etc. efficiently and accurately.

Social networking has also had an impact on medicine—e.g., there are 1 billion facebook users worldwide, so that people can get medical information this way. Biotechnology has increased explosively in relation to storage. The cost of mapping the human genome is decreasing rapidly and now one can pull out a huge amount of data for $20,000. It is becoming possible to cluster and regroup patients by moving into a molecular level. There are 5 stages for acceptance of a new idea: 1) Irrelevance, 2) Relevant but unproven, 3) Proven but dangerous, 4) Safe but not saleable and 5) It will sell —great idea!  ME has largely been ignored as there has not been enough data. The current state of the science is that there are a lot of hypotheses, there is a start on data, there are willing people to collaborate, we have measurements that have not yet been applied to ME and there are patients willing to help. Measurements need to be broad and deep and there must be large numbers of people engaging.

Kogelnik then went on to describe the MERIT initiative. they had a roundtable discussion in New York in June 2012 with 25 clinicians and researchers gathered. The result was a list of priority targets for collaborative research, which could lead to open collaboration and a worldwide plan. As a result 10 research projects are being established.

1. Large scale combination trial of rituximab and valganciclovir

2. International registry and biobank

3. Protein panel in treated and untreated patients

4. Phase 2 treatment of mono and combination pharmacological pilots

5. Immunological biomarkers – exploration studies (NK cells, B and T cells)

6. DNA studies: whole genomes, HLA sequencing, DNA methylation.

7. Mass spectroscopy – environmental measures

8. Comprehensive viral testing

9. Advanced immunological biomarkers

10. Non-pharmacological studies, which need standardisation.  One arm is looking at the evaluation of how Moringa affects NK cells. Included also are projects looking at insurance issues and also possible related diseases (Lyme, autism).

Patients can now register on line to be included in the databases for future possible research [].