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'NIH RFA’s! Money talks – what will this mean for Columbia CII’s ME/CFS research!?'

aimossy

Senior Member
Messages
1,106
"Mini monster study update: As we speak the CII team are finishing the 4th and final assessment of their large amount of information and sample collection for the Monster study. This has been a HUGE undertaking and they have been successful with enrolment retainment – a major achievement! Thank you so much to all the study participants and donors – you all made this possible!"
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Looks like some much needed funds could be available. Im always slightly confused by why they haven't raised more money yet from donations. this is what is says lower down on the page

To date the total raised is $140,430 from 292 donations – thank you so much! Fortunately, there is a direct correlation between the number of donations and the amount raised getting higher and donations are coming in every day! Please help us reach the 500 donations mark and donate HERE.

That doesn't seem like an awful lot to me. Also this post above has been up since this morning and no one has commented on it yet? This is good news surely?

So why is there less interest in this study than in the work Ron Davies is doing? Both are important.
 
Looks like some much needed funds could be available. Im always slightly confused by why they haven't raised more money yet from donations. this is what is says lower down on the page



That doesn't seem like an awful lot to me. Also this post above has been up since this morning and no one has commented on it yet? This is good news surely?

So why is there less interest in this study than in the work Ron Davies is doing? Both are important.
I think one of the reasons is the level of connection that patients feel with Ron, Janet and Whitney, particularly as they are, compared to Ian Lipkin and Mady Hornig, so much more active on social media. I also think that patients like Rons, paraphrasing, "I'm going after the answers here and I don't have time to publish anything" style of research whereas CII seem to have a far more by the book, only publish something when sure about it approach. I appreciate both groups, agree that they are both valuable to the ME "cause" and I donate monthly to both the CII and to the OMF, but I can understand why people find it easier to connect to the OMF.
 

Solstice

Senior Member
Messages
641
I think one of the reasons is the level of connection that patients feel with Ron, Janet and Whitney, particularly as they are, compared to Ian Lipkin and Mady Hornig, so much more active on social media. I also think that patients like Rons, paraphrasing, "I'm going after the answers here and I don't have time to publish anything" style of research whereas CII seem to have a far more by the book, only publish something when sure about it approach. I appreciate both groups, agree that they are both valuable to the ME "cause" and I donate monthly to both the CII and to the OMF, but I can understand why people find it easier to connect to the OMF.

For me it's simply that it's much easier to donate to the OMF, i really rate the CII and really want to help out. But i don't possess a creditcard.
 
Also, don't forget that funds were also raised for a previous stage of the research.
Our patient-led Microbe Discovery Project with all the support from the ME/CFS global community has helped to raise over $1.5 million in funds for CII research – our community made that happen. These funds along with an NIH NINDS grant and heavy subsidization by CII, enabling this collection.
from "The Crunch" section here http://microbediscovery.org/microbial-discovery-immunity-study/
 

Tuha

Senior Member
Messages
638
I also support both groups. I think it´s really pity that Lipkin group doesnt get more money - this group has huge potential. Hopefully they will attract NIH. We should think have to get more money for this group.
There is already a big demand from many good research groups and the patients are simply not able to raise it. That´s why i was hoping that NIH will allocate more money for ME research.