Fundraiser for Dr. Prusty's research

A group of patients started a fundraiser for Dr. Bhupesh Prusty's research at Würzburg University, Germany. There's no (zero Euro) funding for ME/CFS research in Germany.

All funds raised will go to the non-profit HHV6 Foundation and then be donated to Dr. Bhupesh Prusty's lab for his research.

Dr. Prusty gave a talk at the NIH ME/CFS conference last year.

https://www.youtube.com/watch?v=yh53AnVNQqw

Fundraiser (English and German version): https://www.gofundme.com/f/gofundmecfs-support-scientific-research-mecfs

 

There also is now a Go fund me page for those interested in helping:

https://www.gofundme.com/f/gofundmecfs-support-scientific-research-mecfs

 

His best course of action is to apply for an NIH grant - there is dearth of quality research proposals, and they have been willing to fund internationally. I know people complain about funding being low, but researchers need to actually apply for it to go up.

 

The NIH only funds on average about five international grant applications a year.

“ Whether the project presents special opportunities for furthering research programs through the use of unusual talent, resources, populations, or environmental conditions in other countries that are not readily available in the United States or that augment existing U.S. resources”


https://grants.nih.gov/grants/foreign/index.htm


His best bet for an NIH grant would be to partner up with an existing researcher at a university to apply for a NIH grant.

 

Are you sure they only fund 5 foreign grants? That sounds really low and I couldn't find that in the text of your link and the second paragraph doesn't seem connected. Actually they say

I thought they were helping the U.K. biobank, and I'm sure if they are getting so few submissions for me/cfs the special emphasis panel wouldn't care where it came from.

 

Sorry I didn't clarify the 5 grants info is from Walter Koroshetz in an email exchange.

 

Cool, that makes sense. Still, I would think he'd have a decent shot since he has prelim data + NIH invited him to speak last year.

Shocked to hear ME/CFS funding is 0 in Germany. That's so frustrating, is there a seperate thread for this? It's such a large, developed country. I've been lucky enough to visit there and it was lovely.

 

It’s probably just me, but I am very uncomfortable with funding research with GoFundMe. Where are the checks and balances? Where are the other scientists asking hard questions? If even the best scientists submit a grant proposal, it needs to be evaluated for feasibility, significance, lots of things.

When patient groups like SMCI, for example, fund research, they have a scientific panel that evaluates the proposals. No matter how much we may like a scientist or think that he has a cool idea, we can’t check for the pitfalls the way that a scientific review board does. I like the idea of this scientist teaming up with another group for funding.

 

Yes, the majority of the funding that the CureME team receive is from the NIH, however that is just for research, it doesn't cover day-to-day running of the Biobank. In the main, that is now covered by the ME Association.

 

Letter from the HHV-6 Foundation regarding the fundraiser:

 

Solve had no problem supporting Dr. Prusty in the past.
https://solvecfs.org/dr-bhupesh-prusty/

 

I know. But having been funded in the past is no guarantee that your current research proposal is an excellent one. Even the best researchers can write flawed proposals. Ideally the review system gives the researcher a chance to make their proposal even better.

 

We each have to make our individual decisions on what projects we want to support. I personally have donated to Dr. Prusty's efforts.

 

Absolutely. Everyone has their own opinion about where to donate.

 

I had a brief look online and I see that Wuerzburg University has received funding under Horizon 2020 i.e. the European Union (much smaller) version of the NIH funding program [https://www.uni-wuerzburg.de/en/research/our-research/].

However, the problem is that to apply for NIH/Horizon Europe (replacement of Horizon 2020) funding you need resources - i.e. time for staff to apply (months?). It is a considerable work commitment and you may not succeed in getting funding. Also, if you do succeed then delivering the project is a major commitment.
I recall Jaime Seltzer (ME Action) saying that some researchers don't want to go for a big NIH/Horizon Europe grant; they want to stick with smaller projects funded by charities etc. @EspeMor

I've been helping out with Evelien's petition for European Union (EU) funding (under the Horizon Europe program) for biomedical research for ME [https://www.s4me.info/threads/me-ac...tition-is-preparing-a-resolution-on-me.13569/]. The aim is to have ME research funded at a level which reflects the number of people affected (approximately 2 million in the EU) and the severity of the disease. Yes, there are excellent researchers in the EU and they will apply for funding. However, other diseases can e.g. link into the Horizon Europe program via specific policies, ME currently cannot. The result is that Lyme has received funding for "improved diagnostics that will permit early and accurate diagnosis of Lyme disease through the provision of EUR 7.8 million" [https://www.europarl.europa.eu/doceo/document/CRE-8-2018-11-15-ITM-003_EN.html?redirect]. ME, which affects more people, received zero funding "To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation" [https://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html].

So maybe we need to highlight that there should be room for pilot scale research projects e.g. the sort of thing SOLVE funds - funded by NIH/EU Commission ---. I guess that often governments follow initiatives started by voluntary groups.

Contact your elected representative and highlight that currently charities are funding "initial i.e. pilot scale" research --- government has a role!

Highlight that policies result in under-funding of ME research; therefore these policies need to be review/revised.

"They work for you" - remember your elected representative works for you - perhaps sometimes they like to forget that!

@Michiel Tack @Giada Da Ros @Simon M

 

https://twitter.com/user/status/1232315691270688770

 

Now at 29.375 Euro.


https://twitter.com/user/status/1233722641489563649

 

An update was posted today by the patients that organized the fundraiser: