Live tweeting from Invest in ME Biomedical Research Colloquium 2016

[Sasha]

https://twitter.com/i/web/status/738505753858846720

 

[Jonathan Edwards]

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.

 

[A.B.]

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?

The EU health commissioner should also get involved. ME/CFS doesn't seem to be on their radar at all. They should come up with a proper strategy. EU member states probably have a similar number of patients to the US.

I think they will quickly feel the pressure once the NIH really committs to proper funding.

Maybe next year IiME could invite a representative from the EU public health agency.

 

[BurnA]

Now we just need the NIH funding. Is it true that Whittemore indicated a target of $250 million?

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.

 

[Mark]

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.

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.

I got the impression that she has grown the epilepsy research program significantly over the last 5 years, but I didn't get the details down about that - it might be interesting for someone to look up the figures to see whether she has the kind of track record growing the epilepsy research program that we're hoping to see replicated for ME research. I did get the chance to briefly introduce myself to her; Dr Peterson and I talked to her about the farce that CFSAC broadcasts have become in the last couple of years, which she wasn't aware of. I wish I'd had the time to bend her ear a bit more, but I'm sure she was lobbied plenty all day!

It was also delightful to meet Mary Dimmock at last, after all these years of emails and videochats, and we agreed that the kind of gradual progress on funding that Vicky is talking about, while perhaps 'realistic' in NIH's terms, is also not an acceptable rate of progress in human terms, so we're all going to have to work out how to apply more pressure in the right places to get things moving more quickly. I do get the impression that everyone was convinced by Dr Whittemore's integrity and intent, and very encouraged in particular that she's building bridges across the Atlantic. In my opinion it is absolutely clear that she is very much part of the solution here, rather than part of the problem.

Oh, and it was really great to meet you too BurnA; I hope you had a safe journey home and make a quick recovery from the inevitable crash that follows events like this.