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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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We had a strict tweet ban for the colloquium so that people could present data prior to publication. That is entirely healthy and it paid off. The key message for me from the colloquium is that IiME 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, and so on. This is no mean feat for a charity of this size. 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. I think IiME are making possible a co-operative approach that has in the past been difficult in the US. It is all very encouraging.
Now we just need the NIH funding. Is it true that Whittemore indicated a target of $250 million?
To be pedantic, I think this thread has just trespassed more into the territory of IIMEC11, but that's correct: she acknowledged that we are asking for $250m/year, but said that's not going to happen overnight and we have to build towards that figure. She described the $5-6m / year of funding so far as "shocking and disappointing", according to my notes, and said that it's "her hope and her vision" that when she comes back to IiME in a couple of years, the graph of research funding per year will be off the charts.My recollection is that she mentioned this figure as the figure some advocates were suggesting, but she didn't give an indication herself as to what level of funding may or may not be approved.