New MECFS Alert - Episode 69 pt 2 - Carol Head of SMCI (CAA)

[caledonia]

First off, just a note to say this new episode is up, to help Llewellyn get the word out.

Second, has anyone else noticed how Carol Head avoids the IOM, P2P redefinition issue when Llewellyn brings it up? She goes straight to saying how little money there is for research. Never mind that if the IOM and P2P go through, any research done will be garbage because of the garbage definition.

Not that I was counting on the SMCI for any help or anything, but still

 

[Snowdrop]

Clearly the IOM P2P issue is not on her list of talking points.
Somehow that translates as not relevant to address.

 

[Nielk]

Yes. I noticed.

SCFSI is a research organization now who are dependent on government funding. They will not do anything that can be construed as acting against the government.

If they don't get continued funding they will crumble.

 

[PNR2008]

That explains it all.

 

[Denise]

If they don't get continued funding they will crumble.

Thanks Nielk - I was not aware that SMCI currently receives government funding. Where can I read more about this?

 

[Nielk]

http://solvecfs.org/research/funding-mecfs-research/

This page shows research efforts by SCFSI. If you follow some of the details you will see that several of these researchers have received quite a nice amount of "follow on" funding as a result of SCFSI's seed funding. These grants are from the NIH.

 

[Denise]

http://solvecfs.org/research/funding-mecfs-research/

This page shows research efforts by SCFSI. If you follow some of the details you will see that several of these researchers have received quite a nice amount of "follow on" funding as a result of SCFSI's seed funding. These grants are from the NIH.

Oh.
I think I misunderstood "SCFSI is a research organization now who are dependent on government funding."
I did not realize you meant that the researchers later got government money.
I thought you meant that SMCI gets government money.
My mistake.

 

[Nielk]

Oh.
I think I misunderstood "SCFSI is a research organization now who are dependent on government funding."
I did not realize you meant that the researchers later got government money.
I thought you meant that SMCI gets government money.
My mistake.

They state that 100% of their income is from private funding. This might be true but it is very important for them to have a good relationship with the government since the NIH ends up "follow on" funding for their researchers. Without these added grants, they would not be able to make large accomplishments.

This might be true of other ME/CFS research organizations and that is probably why we don't see any of them reaching out to advocate for us against the government agencies.

 

[Forbin]

I wonder if part of the reason that they changed their name from CAA to SMCI had to do with their move to Los Angeles.

In Los Angeles, "CAA" means one thing, the Creative Artists Agency, one of the biggest talent agencies in the world.

 

[caledonia]

I wonder if part of the reason that they changed their name from CAA to SMCI had to do with their move to Los Angeles.

In Los Angeles, "CAA" means one thing, the Creative Artists Agency, one of the biggest talent agencies in the world.

I didn't realize they had moved. When did that happen?

 

[Forbin]

I'm not sure when the move was made, but it is mentioned at the 7:45 mark in Part 1 of the interview.

 

[Hate ME/CFS]

Carol Head's expertise is in marketing, schmoozing, etc. The first years of CFIDS/CAA with its founder, Marc Iverson was all about the patient & ME/CFS. The CAA/SMCI is now a puppet organization of HHS/NIH/CDC, and are a disgrace to the ME/CFS population. All they want is their seat at the table, which they are not putting to good use.