Telebriefing on P2P final report: Tues June 16, 11am EDT

[Sean]

They are not providing an online feed? Really?

I haven't got a pound sign! I got cut off.

I think they mean the hash symbol (bottom right key on phone keyboard), not the currency symbol.

 

[Sasha]

They are not providing an online feed? Really?




I think they mean the hash symbol (bottom right key on phone keyboard), not the currency symbol.

I tried the hash button, got cut off - just tried the star button, got cut off - I'm out of buttons.

Have any UK people managed this?

 

[Sidereal]

An operator answered and asked me for my name, organization, and email address before putting me through.

 

[Sasha]

Kissing this one goodbye... maybe it will let me hear the playback.

 

[Never Give Up]

Kissing this one goodbye... maybe it will let me hear the playback.

Sorry.

 

[Never Give Up]

Miriam Tucker asking about the sources of the estimated costs of the disease.

Answer: indirect costs difficult to calculate.

 

[Never Give Up]

No further questions at this time. WHAT?!

 

[Sean]

Yeah, stuff this, I'm off to bed.

So much for better communication with patients.

 

[Sean]

No further questions at this time. WHAT?!

Sounds like I didn't miss much.

 

[Nielk]

We don't know how many media outlets are actually listening in.

 

[Nielk]

Apparently, they are clueless to the history of the disease. Stating that CFS was always the name until they added ME as in ME/CFS!!!???

 

[Never Give Up]

So far it's all the same as in the report.

 

[Nielk]

No more questions - it's over.

 

[Never Give Up]

Looks like we have no other questions. Thank you for participating. Bye.

 

[ukxmrv]

I caught the end of it (on Skype) but there were no further questions and it closed.

What was the question on biomarkers and something about the wrong impression?

(sorry to be vague Skype wasn't clear)

 

[Never Give Up]

Apparently the press has no interest.

 

[Sasha]

 

[Nielk]

I caught the end of it (on Skype) but there were no further questions and it closed.

What was the question on biomarkers and something about the wrong impression?

(sorry to be vague Skype wasn't clear)

There was only one question asked by Miriam Tucker about the figures for the burden of the disease. They had to cut it a half hour short because they only allowed questions from the press. The press was either not interested or did not listen in.

 

[Never Give Up]

I just sent Miriam Tucker a thank you email for her participation. You can, too @ miriam@miriamtucker.com.

 

[SOC]

Well that sounds like a big frigging flop. I guess I'm glad I wasn't able to try to listen in. What a waste of time and money. If this was supposed to be for the media, they clearly didn't do the necessary work to inform and interest the media. What a half-assed job.

Or did I miss something?