Fundraiser for Dr. Prusty's research

Joh

Joh

Senior Member (Voting Rights)
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.


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


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


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

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

45043166_158066508899231_r.jpeg
 
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.
 
dreampop said:
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.
Click to expand...

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.
 
Ron said:
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.
Click to expand...

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

The 27 Institutes and Centers (ICs) of NIH provide leadership and financial support to researchers both inside and outside the United States. Approximately 80% of NIH funding goes to support research grants, including grants to foreign organizations. Many of the ICs have international programs/collaborations that can be linked to from their homepages.

This page provides information specifically for foreign applicants and grantees. Applications for research grant support from foreign organizations are treated as if they were applications from domestic organizations.
Click to expand...

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.
 
Last edited:
Ron said:
Sorry I didn't clarify the 5 grants info is from Walter Koroshetz in an email exchange.
Click to expand...

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.
 
dreampop said:
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.
Click to expand...
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.
 
Wilhelmina Jenkins said:
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.
Click to expand...


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

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.
 
Wilhelmina Jenkins said:
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.
Click to expand...

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

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

#GOfundMECFS is a huge success and has (almost) reached its goal of EUR 30,000. We are extremely grateful for the incredible generosity of our donors and for the fantastic support from the ME/CFS community! We saw people advertise for #GOfundMECFS, we saw them organise fundraisers of their own to support this project, we received touching messages and we felt so much determination from all sides to finally help improve our situation.

All of this has resulted in our fundraiser reaching its goal in less than a month – but in our opinion it has even let it become something much bigger. That may sound a bit exaggerated from an American perspective, but please keep in mind: In Europe, and particularly in Germany, we still lag very far behind the progress already made overseas in terms of awareness and recognition of our disease. In particular, #GOfundMECFS now gives us another very strong argument when it comes to convincing politicians and others that research on ME/CFS must finally be supported by public funds.

With our fundraiser being on the edge of the EUR 30,000 mark we are very happy to announce: Work in Prusty Lab on the ME/CFS research project in question has already begun and will speed up in the coming weeks. We have started to transfer the funds collected so far in installments of EUR 12,500 – the reason for this procedure being that in this way the costs for wire transfers can be kept extremely low. We will keep you updated on our progress.

Since #GOfundMECFS has already shown to be very beneficial for our cause in many different ways, we are planning to keep the fundraiser active beyond the originally envisaged goal of EUR 30,000. Funds collected in excess of EUR 30,000 will be used to expand Prusty Lab's ME/CFS research project in terms of patient and control cohort size. If you consider to donate, please remember: The basic project is now already on its way. So please do not donate if you are living with financial constraints. Apart from that all further donations will also be highly appreciated as contributions to the scientific fight against this crippling disease!

Your #GOfundMECFS team
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom