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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS Collaborative Research Centers & Data Management Center Announcements

Wonko

Senior Member
Messages
1,467
Location
The other side.
I'm more for the Ron Davis "let them know everything, let's open source this thing" approach :)
I was being fast and delicious (as I assumed you were), in that data people should, in most cases keep data confidential but not their own existence, as seems to currently be the case.

However, I seem to only have the memory capacity of 3 goldfish, 2 of which are feeling a bit ill, so my ability to know everything is a bit limited, I'll consider it (my need to know everything) again once I hit 0.12 elephants.
 

ivorin

Senior Member
Messages
152
I was being fast and delicious (as I assumed you were), in that data people should, in most cases keep data confidential but not their own existence, as seems to currently be the case.

However, I seem to only have the memory capacity of 3 goldfish, 2 of which are feeling a bit ill, so my ability to know everything is a bit limited, I'll consider it (my need to know everything) again once I hit 0.12 elephants.
As long as they don't sell us out to the elephants for petty cash, I'm sure the data will flow like a river of mental-fogged goldfish :)
 

Londinium

Senior Member
Messages
178
Sad for Ron Davis but pleased that there was such a decent field of applicants. If the NIH is to be believed, one of the issues with low ME/CFS funding is not having enough applications, so I hope some of those that didn't get CRC status will still go on to be successful in getting their individual experiments funded via the normal route.

I am quite a fan of Dr Hanson. Her team's website has some good details of the research projects they'll be undertaking: http://neuroimmune.cornell.edu/

I'm reading through them now, they look good:

 

me/cfs 27931

Guest
Messages
1,294

Galixie

Senior Member
Messages
219
Can the folk in the USA tell us whether there is any significance in the fact that all the winners are East Coast - 2 New York, 1 Connecticut, 1 North Carolina.

I wonder about this myself. Does this mean only the eastern side of the country will be studied? I'm on the west coast, so I certainly wouldn't be likely to see any of the specialists that will be getting funding.
 

RL_sparky

Senior Member
Messages
379
Location
California
I wonder about this myself. Does this mean only the eastern side of the country will be studied? I'm on the west coast, so I certainly wouldn't be likely to see any of the specialists that will be getting funding.

Dr. Lipkin's has previously collected samples that were gathered over a years time frame and were collected from all over the U.S. including from Dr. Jose Montoya's patient population at Stanford.
 

me/cfs 27931

Guest
Messages
1,294
There is a typo in the NIH news release.

https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research


Pretty sure that's supposed to be Maureen Hanson, not Maureen Ph.D. ;)

I emailed the NIH a note about it. But those with a direct connection might get it fixed more quickly.

Just got a reply. That was quick. And they even called me "Dr.", but I can assure you I never got past a masters degree. :)
NIH said:
Dr. ########,

Thank you for bringing this to our attention. I have fixed the error.

Sincerely,
Julie Morton

Julie Morton, NIH Web Team Lead
www.nih.gov
NIH Employee Intranet Editor http://employees.nih.gov/
NIH Office of the Director (OD)
Office of Communications and Public Liaison (OCPL)
Online Information Branch (OLIB)
odolibprteam@mail.nih.gov
mortonj@od.nih.gov
301-435-7478
 

greeneagledown

Senior Member
Messages
213
Man, I hate to be a downer, but I am mostly just bummed that Ron and his team didn't get one of the grants. I hope they can get money somewhere. I am sure he will have informal input in Hanson's work, but overall this is still a huge disappointment. I just don't know where he is going to get the money to move this thing forward.

All these other researchers are very smart. But let's face it, they are not Ron Davis.
 

ivorin

Senior Member
Messages
152
Man, I hate to be a downer, but I am mostly just bummed that Ron and his team didn't get one of the grants. I hope they can get money somewhere. I am sure he will have informal input in Hanson's work, but overall this is still a huge disappointment. I just don't know where he is going to get the money to move this thing forward.
Green Eagle Downer :)
 

greeneagledown

Senior Member
Messages
213
Maybe one bit of good news is that it appears these teams will have lots of flexibility to collaborate with others -- maybe even people or teams not mentioned in the grant application? I just hope there is a way for Hanson to get our boy Ron in the game.