Next CFSAC Meeting - August 18th & 19th, 2015

[Sasha]

I had to go out and missed all comments until Jeanette.

Did anybody mention the scientists' letter that was published today?

Who spoke?

 

[jimells]

@geraldt52 when one hears them droning on about "focus groups", it's easy conclude they are planning yet another worthless public relations campaign.

 

[Sasha]

They seem to have broken early for lunch - did they say when they'd be back?

 

[caledonia]

Mary Dimmock, Mary's son (Mary read that one too), Joe Landson, Denise Lopez Majano (read by Joe), Father and daughter with ME (sorry don't remember their names), Eileen Holderman by phone, another lady by phone (don't remember name. Jeannette Burmeister was supposed to speak by phone but they were unable to connect.

 

[shannah]

I had to go out and missed all comments until Jeanette.

Did anybody mention the scientists' letter that was published today?

Who spoke?

I think it was Mary Dimmock (spelling?) who talked about the letter. Can't remember details though. Sorry.

 

[jimells]

I loved the comments about sending research grant applications in Arabic to the Dept of Fatherland Security so that *someone* will pay attention to them.

 

[caledonia]

I sort of missed what they said about lunch, but I think a one hour break.

 

[caledonia]

I think it was Mary Dimmock (spelling?) who talked about the letter. Can't remember details though. Sorry.

Yes, Mary read a good part of the letter.

 

[waiting]

I sort of missed what they said about lunch, but I think a one hour break.

They said they will restart @ 1pm sharp (EST)

 

[jimells]

Dr Klimas' remarks regarding her work on the IOM project were very interesting. She said they didn't want to include lists of suggested tests and illness to rule out because she wants doctors to put on their thinking caps. Then she said they wanted to keep the criteria simple so that doctors can easily remember the criteria. That seems a little contradictory to me.

She followed up with a discussion of primary care physicians being forced to practice "triage medicine" in order to get patients out the door in seven minutes. She also talked about how many patients show up at her specialty clinic with no lab tests from their GP, so the first thing she has to do is order CBC, thyroid, ANA, RA factor tests and she finds boatloads of basic stuff completely missed by the GP. It was a most disturbing indictment of current practices.

 

[Nielk]

The IOM criteria is to be used by GPs to diagnose SEID patients. They don't want to tell GPs what tests to take or which exclusions to look for. At the same time, they clearly state that GPs are not reliable and don't have time to investigate in order to properly diagnose patients.

 

[Kati]

Question, as i missed the begining: is dr Montoya present today?

 

[Bob]

I loved the comments about sending research grant applications in Arabic to the Dept of Fatherland Security so that *someone* will pay attention to them.

Yep, i thought the chap wearing the Arabic headgear and speaking in Arabic made really great points. (And he was quite amusing.) The point about Lipkin and Davis getting their grants applications turned down needed to be said, and he said it really well, and it must surely stop them continuously saying that they don't receive high quality grant applications (he mentioned that as the basis of his talk).

 

[Sasha]

Yep, i thought the chap wearing the Arabic headgear and speaking in Arabic made really great points. (And he was quite amusing.)

What have I MISSED?

Roll on, YouTube...

The point about Lipkin and Davis getting their grant applications turned down need to be said,and be said it really well, and it must surely stop them continuously saying that they don't receive high quietly applications.

Did he mention the scientists' new letter?

 

[Bob]

Dr Klimas' remarks regarding her work on the IOM project were very interesting. She said they didn't want to include lists of suggested tests and illness to rule out because she wants doctors to put on their thinking caps.

She also said that NK function tests almost made it into the criteria as a diagnostic tool, but they decided that general doctors wouldn't do the test properly. I think she said the test has to be done within 24 hours after the blood is collected, and that normal testing facilities wouldn't achieve this. Obviously an erroneous negative test result wouldn't be helpful, but I'm not sure why they couldn't stipulate that the test be carried out within 24 hours, and any other criteria that are necessary for interpreting the test correctly.

 

[Bob]

What have I MISSED?

Roll on, YouTube..

Did he mention the scientists' new letter?

Nope. Afraid not.

 

[Nielk]

Question, as i missed the begining: is dr Montoya present today?

No.

 

[Nielk]

CFSAC is recommending the use of the CCC for research purposes.

 

[Nielk]

Another recommendation is to move the disease to the NINDS Institute (neurology)

 

[caledonia]

Did he mention the scientists' new letter?

Mary Dimmock read part of the letter in her testimony.