• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Today: Videocast of NIH Council Meeting to authorise major ME/CFS funding - Thursday 26 May 2pm EDT

Kati

Kati

Patient in training
Messages
5,497
It was a bit underwhelming, but what striked me most is that when they posted a grant application for ME/cfs they received no application. It shows how neglected and stigmatized the field is not only in health care, but at the researcher level. It feels like solitary confinement
 
D

Denise

Senior Member
Messages
1,095
If I understand correctly, the next step is that each of institutes that are part of the Trans-NIH Working Group have to approve funding for this.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
Kati said:
what striked me most is that when they posted a grant application for ME/cfs they received no application
Click to expand...
1) First problem is now we need to train the granters (I forgot what they are called) but if they reject all applications we gain nothing with money. This is urgent and maybe as a community we set up an education or presentation package for them on what we know so far of CFS and how patients are doing.
2) To apply for a grant as a new researcher, you need to apply for grant (time to fill out and process the applications) w hypothesis (money to do a small pilot needed), so we need to grant money to start up applications so they can even get to the money.
 
R

Rooney

Senior Member
Messages
185
Location
SE USA
lnester7 said:
To apply for a grant as a new researcher, you need to apply for grant (time to fill out and process the applications) w hypothesis (money to do a small pilot needed), so we need to grant money to start up applications so they can even get to the money.
Click to expand...
Yesterday in Ron Davis's remarks at the protest, he stated that his application was turned down because he could not provide an hypothesis.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
Rooney said:
Yesterday in Ron Davis's remarks at the protest, he stated that his application was turned down because he could not provide a hypothesis.
Click to expand...
We need to ask the NIH people how to address that.

I had a friend also that couldn't apply because she didn't have money to get even to the hypothesis. this is a Big issue we need to address. Have a plan.
 
Kati

Kati

Patient in training
Messages
5,497
It reminds me of the woman at last year's CFSAC that said "the applications, they weren't that good" so simply, some will try, 97% gets rejected, so they simply try where they have more chances of acceptance (Zika, Ebola, HIV, Cancer)
 
You must log in or register to reply here.