Next CFSAC meeting date has been announced for November 8, 2011

[Nielk]

Yes, please keep us posted suzy.

 

[Andrew]

Just thinking here. Is the meeting Eastern Standard Time? Because dummy me didn't plan right.

Anyway, I'm scheduled for Tuesday 10:45am.

 

[Nielk]

Just thinking here. Is the meeting Eastern Standard Time? Because dummy me didn't plan right.

Anyway, I'm scheduled for Tuesday 10:45am.

I'm sure it is because it's based on their time in Washington DC.
I hope this doesn't mess you up Andrew.

 

[Andrew]

It doesn't mess me up so much I can't do it. More upsetting than anything. Before I got CFS I never made this kind of mistake.

 

[WillowTree]

Participant Call-In phone no. (866) 395-4129 So it is a toll-free no.--right?

I called the operator who confirmed that this is a toll-free number. Of course, that is in the USA.

 

[Dx Revision Watch]

I called the operator who confirmed that this is a toll-free number. Of course, that is in the USA.

Thanks, Willow, no good for us Brits. And nothing, as yet from Ms Bond, though it's only 12.41 EST in Washington DC - so the rest of the afternoon to go.

Mary Schweitzer put the following out on Co-Cure, yesterday:

We need someone with Skype and Dragon or other speech conversion capabilities to try to get as close to a transcript of the CFSAC meetings as possible.

The audio is going to be run over phone lines, toll-free in the U.S. but not overseas.

If anybody thinks they can help with this, let me know. I'll be inside typing as fast as I can. <g>.

I'll get segments up on my blog as soon as I have them; tweeting is beyond my mental capabilities at the moment.

But perhaps we have software to do our own version of closed captioning.

Mary Schweitzer​

 

[Andrew]

Whew, I just did a practice read it it took me 20 seconds longer today. Luckily this still left me with plenty of time.

I can't believe how difficult it has become to read nonstop like that.

 

[Nielk]

Whew, I just did a practice read it it took me 20 seconds longer today. Luckily this still left me with plenty of time.

I can't believe how difficult it has become to read nonstop like that.

I know the feeling Andrew. I can empathize with you. with me. it also depends on how many words I'm going to stumble on but, I figured stumbling is good because that's one of our symptoms so they can hear what it's like!

 

[Hope123]

For those with the means, Skype offers a cheap option for listening in. I haven't looked at it in detail but $2.99 might buy you unlimited calls in US and Canada for the month. It is even cheaper if you don't want month-to-month but rather 6 months / 12 months etc. contract. Remember, Skype can dial out to landline phones and conferences once you are on a plan. Otherwise it is FREE for computer to computer calls worldwide - get a microphone for as less than $10 from Amazon if you don't have one.

http://www.skype.com/intl/en-us/prices/pay-monthly-new/

People in other countries might also consider this option but your prices for Skype might be different.

 

[Andrew]

I'm actually doing okay with reading it. I'm just surprised at how much effort it takes. I don't remember having this kind of trouble last time.

 

[Nielk]

Well, if you will be listening in tomorrow and you hear a woman's voice stumbling on her words, you will know that is me.

Hope123,
That's a good idea to use skype to call in but, how would it work with the password code? Do you think we can just add that in?

 

[SpecialK82]

Good luck to all of you who are testifying and/or protesting! I'm sure you guys will do great on the phone - if you do stumble on words you can always say it's the CFS if you want, because that's what I do all the time now.

I'm with you all in spirit - I just sent my protest emails!

 

[Andrew]

I'm sure you guys will do great on the phone - if you do stumble on words you can always say it's the CFS if you want, because that's what I do all the time now.

I plan to do so well, I'll be offered jobs as an announcer. :victory:

 

[Hope123]

Well, if you will be listening in tomorrow and you hear a woman's voice stumbling on her words, you will know that is me.

@hope123,
That's a good idea to use skype to call in but, how would it work with the password code? Do you think we can just add that in?

I tested this out. Right now, you just get a recorded message from the gov't but it's late.

The way that conference call usually work is you dial in to a number, get a pre-recorded message asking you to put in a pass code, and after you put it in, are patched in to the right conversation.

I suspect it will work similarly using Skype only you use the Skype keypad to put in the code. The tones you hear when you punch in numbers using a regular phone are the same in Skype.

 

[Nielk]

I tested this out. Right now, you just get a recorded message from the gov't but it's late.

The way that conference call usually work is you dial in to a number, get a pre-recorded message asking you to put in a pass code, and after you put it in, are patched in to the right conversation.

I suspect it will work similarly using Skype only you use the Skype keypad to put in the code. The tones you hear when you punch in numbers using a regular phone are the same in Skype.

Thanks hope123,
This is a big help if it works because I don't want to tie up my one phone.

 

[Nielk]

As far as using skype to call up the CFSAC from other countries, I think that there should be no charge.
Skype charges are depended on the country you are calling TO. since it's a toll free number in the US, I would think that it should be free from any country. I am not certain of this but, this is my understanding.

 

[Dx Revision Watch]

As far as using skype to call up the CFSAC from other countries, I think that there should be no charge.
Skype charges are depended on the country you are calling TO. since it's a toll free number in the US, I would think that it should be free from any country. I am not certain of this but, this is my understanding.

Well, I've heard nothing back from Martha Bond. The initial notice that went out had said "audio". To me, "audio" means being able to listen, online, from a live stream, in whatever country you are a resident of, assuming that it will buffer OK, not tying up a phone line all day or making repeated calls to catch those agenda items you want to follow. So I am going to have to wait until the video is up later this week.

For the last meeting (May 2011) Wanda Jones had confirmed that Testimony spots could be reserved and delivered via a DVD. If I were in the US and giving testimony over the phone, I might consider requesting that I provided my oral Testimony on a CD. That might be an alternative to those who worry that they might not be well enough on the day or that the dog will start howling or there's a FedEx delivery guy at the door and you could provide a recording that is exactly 5 minutes or less.

 

[Nielk]

Mary Schweitzer just spoke. She did an excellent job!!!
She told the CDC off about what they show on their website.
GET is dangerous!!!!!! It makes us ill!
CBT - would they recommend it to a lung cancer patient as treatment?

 

[ixchelkali]

The guy from Hemipherix (sp?) who spoke about the ever-changing requirements and hoops the FDA has put them through on Ampligen was interesting.

Several good patient statements.

But trying to follow the conversation by phone is a pain, even though the more experienced committee members are doing a pretty good job of remembering to identify themselves. Lenny Jason is best about it, which is funny 'cause his voice is one of the most recognizable.

I get the feeling that Nancy Lee, the new Designated Federal Officer, doesn't quite "get it" yet regarding the special needs of ME/CFS patients. Maybe after she's heard more of the patient testimonies she'll begin to understand.

 

[Nielk]

I didn't get the Hemispherx representative. I thought this was a time slot for PATIENTS.
I iked the ones who enacted a CFS patient being taken away to a psych ward. I thought it was effective.