Invest in ME’s 2016 international research conference in London ended on Friday with a talk by Professor Ron Davis on his “Severely Ill, Big Data” project that was described by patients as “mind-blowing” and “really exciting”.
His talk was the culmination of three days of research presentations by leading names in biomedical ME/CFS research including Professor Mady Hornig of Columbia University, Dr Jo Cambridge of University College London, Dr Vicky Whittemore of the US National Institutes of Health (NIH), Professor Don Staines from Griffiths University, Australia, and Professor Carmen Scheibenbogen of Charité Universitätsmedizin Berlin.
Phoenix Rising provided Twitter commentary throughout the conference and reported that Professor Davis, of Stanford University, presented a “Big Data” molecular analysis of the metabolism of his son, Whitney, who is gravely ill with ME/CFS. The data showed that some molecules were enormously deficient or in surplus, including an extremely rare and significant deficiency of biotin, a B-vitamin crucial to cellular energy.
Data from another severely ill patient showed a different pattern and Davis said that it was important to move towards “personalized medicine”. His team’s work on the severely ill patients in his study, he said, involved analyzing billions of data points and had required the invention of new technology. The point of the research was to find biomarkers, looking at severely ill patients who would have the most prominent “signal”. Glycolysis, a key energy process in the body, did not appear to be working properly in patients.
Dr Davis’s talk was received well by the audience at the conference, concluding with a round of applause. This was Davis’s first appearance at an Invest in ME conference.
Other new attendees included the Solve ME/CFS Initiative’s Dr Zaher Nahle, and Dr Vicky Whittemore, who was reported as saying in her presentation that the NIH had “basically ignored ME in the past”, that this was “not acceptable” and that funding over the years had been “pathetic”.
The one-day conference was preceded by a two-day closed research colloquium. Professor Jonathan Edwards of University College London, who chaired several of the colloquium sessions, said, “The key message for me from the colloquium is that Invest in ME have now built a collaborative research community not just in Europe but including people like Davis, Whittemore, Nahle and of course people like Baraniuk, Peterson, and Hornig, who have been coming for several years… Whittemore gave opening presentations at both colloquium and conference and came across as absolutely committed to engaging across the Atlantic and keen to explore practical collaboration.”
He added, “I think Invest in ME are making possible a co-operative approach that has in the past been difficult in the US. It is all very encouraging.”
Invest in ME reported that delegates from over twenty countries attended the event.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the