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.
An #MEAction article by Simon McGrath reports Davis’s talk in depth.
3 thoughts on “Davis at Invest in ME: New Severe Patients Data”
Kinda weird but I have severe ME and crave oranges, I eat an embarrassing number a day. Broken citric acid cycle?
Thank you Alex. Invest in ME Research posted today..
Now back to Southampton and Norwich and other places following the last of the meetings yesterday evening which continued the collaboration theme in biomedical research.
We will make a report of the conference.
The team is very encouraged by the achievements being made which we believe will underpin future years of research leading to real results.
For far too long the oil tanker of ME research has been steaming in the wrong direction. Now we have managed to halt that tanker and begin to turn it around to the right direction – the right stuff.
Also happy with EMERG working together to create real opportunity in Europe to partner USA and Australia/New Zealand.
Thanks BRMEC6 and IIMEC11.
Thanks to all the researchers and participants at both events which has brought huge hope for change.
Thanks to all the delegates at IIMEC11 for making the day so enjoyable.
And thanks especially to IiME supporters for making it all possible.
Sorry, I meant to give the link to this post in Invest in ME Fabook group – https://www.facebook.com/groups/5804522506/permalink/10153714949747507/
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