Discussion in 'ME/CFS research news' started by Ravn, Feb 18, 2020.
Involved: VanElzakker, Proal, Fobes
More snippets from the different projects described on this site.
A lot of use of the term cutting-edge but no mention of financing (except for a donate button).
A hugely ambitious project - can it be real?
I am afraid this looks very amateur and disorganised.
Projects of this sort, to be done properly, need big infrastructural funding.
It sounds like some people crowdfunding for their salaries rather than a serious scientific proposal.
I think also that N=1 or 2 or 3 will be a problem as well. Did they represent the disease? how long were they sick for? Is aging involved in the pathology?
Well as a lay person I think that it Looks fantastic. I just hope they can get funding. I think that Michael VanElzakker is one of the compassionate commited and high end, connected, new generation we need. I must admit I was disappointed as I initially thought it was all funded and the age old question of “how” seems to uncertain .
I note in the imaging project its written that
This looks interesting and the kind of work that is needed and I hope it will be properly funded and well executed.
a nice wishlist I would be pleasantly surprised if they succeed in fulfilling just one . but then I really could do with a pleasant anything
Community Q&A with Polybio, October 26. Details and registration here:
Sounds impressive but... funding.
Why reserve the additional info on study design etc. for those "capable of making larger tax deductible donations"?
Indeed – and do you have to make your donation first?
Just watched the stream. Was pretty impressed. Also a little confused at the current state of funding, since at times they seemed to indicate that some of the studies were already underway. (Edit: yeah they have no funding as of yet )
You can watch the replay of the stream here:
Based on what they were saying, I believe what they are getting at here is that they value the transparency of the funding, and want to allow larger donors to be able to fund certain aspects of the work selectively if they would prefer. I'm sure you could request the same thing as a small donor if you would be interested. That was my interpretation at least.
Also I believe they mentioned that each project would cost in the neighborhood of $500k-$700k USD.
One unrelated question I had was that Amy mentioned reading "dozens" of studies linking pathogen activity to connective tissue issues. Is this link really as well understood as that statement seems to suggest?
That seems like an awful lot. I'm not sure they can get there privately funding. Did MVE mention the PET study he was trying to do, I feel like I read that got funded a few years ago.
Edit: apparently this was never fully funded via another thread.
Welcome to the forum Berban.
In short, not that we are aware of. I'd also highlight that many studies linking pathogen activity to connective tissue issues doesn't necessarily mean that any link is well understood or actually there - after all there are many studies that 'show' that GET and CBT are useful treatments for ME...
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