Member questions for Dr. Sadie Whittaker, new Chief Scientific Officer of Solve ME/CFS Initiative

Remember this thread? The Q&A with Dr Whitaker was sidetracked by my little trip into hospital, I've now started discussing with Solve when it might happen again and it looks like it will now take place early(-ish) in the new year, so does anybody have any further questions?

We have threads on their latest newsletter, https://s4me.info/threads/solve-cfs-chronicle-winter-2018.6899/, and a webinar with Dr Whitaker in a few days, https://s4me.info/threads/webinar-s...uilt-by-the-community-6th-december-2018.6924/, which might provide some inspiration for questions.
 
Hutan said:
The Patient Resources page is under construction.
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Hutan said:
tell us what is happening with the website
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Good question. I'm pretty sure the 'under construction notice' has been there for quite a while.
Hutan said:
A question could be
How is this single global biobank and registry of consolidated data going to work? Do you plan to have just one site in the world where samples are stored? Wouldn't just close collaboration between biobanks and registries be a more achievable aim? Will this planned single global biobank and registry provide coverage of post-Ebola ME/CFS?
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Maybe also ask about the timeline: where are they at, when are they likely to go active?
And definitely ask for more info about the registry. A while ago, when they started pre-registrations, I emailed to ask if that included International patients and the answer was yes. What I'm not clear about is how the registry would work for International patients, or US patients living far from research centers for that matter. Would we form a sort of contact list for researchers wanting to do questionnaire style studies (e.g. like Jason's PEM work)? While those near (US) research centers might get invited to provide tissue samples or participate in other studies (scans, exercise, etc)?
Forbin said:
I'm just thinking that a lot might be learned by comparing samples (blood, microbiome, etc.) from the same patient, both while ill and in remission.
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This.
Trish said:
will you find a way to involve people with severe ME?
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And this.
 
So, finally, Solve and I have been able to agree a date - it's been somewhat frustrating but I tend to think it's a good thing that they are so busy. The plan at the moment is to do a Q&A/interview/chat over Skype on Friday 3rd May, which will hopefully allow me to do some minor editing (mainly adding titles and credits) and release it the following week. Given that this years Ramsay Award grant applications open on the 1st May, we will be talking about that, as well as their registry and biobank, and including as many of your questions that I've got already as is possible - ideally I'd like to keep it to 30 mins or so if I can.

So, if you have anything that you'd like me to bring up then post it here and I'll do what I can.
 
Can any researcher receive funding with the Solve ME/CFS initiative, say for example a research team from Belgium?

How does that normally work - do researchers have to apply and submit a proposal, do they have to contact someone at Solve ME/CFS Initiative or is it someone at Solve ME/CFS Initiative who actively searches for interesting projects?

Not that I have someone I mind, just asking in case we happen to find a Belgian researcher who's willing to do biomedical research into ME/CFS.
 
Michiel Tack said:
Can any researcher receive funding with the Solve ME/CFS initiative, say for example a research team from Belgium?

How does that normally work - do researchers have to apply and submit a proposal, do they have to contact someone at Solve ME/CFS Initiative or is it someone at Solve ME/CFS Initiative who actively searches for interesting projects?

Not that I have someone I mind, just asking in case we happen to find a Belgian researcher who's willing to do biomedical research into ME/CFS.
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Simple answer is that they will fund internationally. An example of this would be Prusty, one of the researchers looking at mitochondria and finding signs of "something in the blood", is based in Germany and was funded through the Ramsay Research Award scheme.

Yes, proposals have to be submitted - https://solvecfs.org/applying-for-an-award/
 
Thanks for everyones input. This interview took place Friday just gone (3rd May), there were a few technical hitches which meant that, so far, I don't have the recorded video of it. Once I do I'll crack on with some start and end credits and then upload it to our YouTube channel.
 
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