Live webcast IoM meeting Jan. 27th 1:pm starting

[leela]

go gabby!

 

[Valentijn]

Very good presentation by Gabby Klein. I think a good balance, and the somewhat forceful tone seemed appropriate.

 

[alex3619]

Gabby

 

[Valentijn]

Next is Lori Chapo-Kroger from PANDORA.

 

[Valentijn]

Better audio, but her slides aren't working. Oh, there's the slides!

 

[Mark]

A small team of volunteers did an extraordinary job at extremely short notice, and put together our presentation for Gabby to deliver, based on the summary of members' comments that I produced in this thread. Here are the materials they put together for this presentation:

Presentation powerpoint (as PDF):
(attached)

Presentation text:
https://docs.google.com/document/d/15_jjBMd4SIKenitu_vugE2wzZ2KUF3QRijow2MLacCA/edit?usp=sharing

References:
https://docs.google.com/document/d/1ZzUELQ0ki_hO00iGKfi4hpq9nR-hxPphBjmJPXhgY_E/edit?usp=sharing

Huge thanks to everyone who helped with what was a very special team effort to get this done in time. It's a shame that we ran out of time to bring the presentation back to the thread for further discussion, but I hope what we have presented is representative of the views of our members as expressed on that thread.

 

[Firestormm]

I missed Gabby

Thought Lori's was good

 

[leela]

great job, lori!

 

[Valentijn]

Next is Carol Head, CEO from CFIDS Association of America (CAA)

 

[leela]

"that present under *any* of the current case definitions"
says carole head

 

[Valentijn]

Carol Head says more "evidence based" information is needed.

Why does that phrase make me want to stab things?

 

[LaurelW]

Drugs that effectively treat symptoms? Don't make me bust out laughing.

 

[Valentijn]

The presentation from the New Jersey CFS Association doesn't seem to have anything new to say.

 

[leela]

however elizabeth unger is taking copious notes on the coding points.

 

[Valentijn]

Now Charmian Proskauer from Massachusetts CFIDS/ME & FM.

 

[Valentijn]

however elizabeth unger is taking copious notes on the coding points.

I think some other members were lapsing into a coma. Good to see that someone enjoyed getting definitions read to them

 

[Valentijn]

Proskauer is focusing on the issues with children - both in illness supposedly presenting differently, and school issues.

 

[Nielk]

Proskauer is focusing on the issues with children - both in illness supposedly presenting differently, and school issues.

This is an important issue which doesn't get talked about enough.

 

[Purple]

My sound cut out just when Proskauer started talking about journals. What did she say?

 

[Valentijn]

Now Mary Schweitzer for the Wisconsin ME/CFS Association.

So far it's a history lesson.