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

[Dx Revision Watch]

Hi Andrew,

Thanks for the advice. Maybe I should do that. I hope it's not too late to get a spot. I just thought that being there personally
would have more of an impact but, it's so hard to predict how I'm going to feel on those two days.

I thought about the different ways for me to get there and figured driving is the safest because I can just sit all the time. all the other ways like flying, taking the train or bus, involves too much standing and walking.

Nielk, Mary says it can vary widely. She knows at least three have said they will be going and she says she guesses between 20-50 at previous meetings.

I agree that if you don't think your health is up to it then phone Testimony might be the best option.

Before the last meeting, I had asked someone to ask Wanda Jones whether Testimony on a DVD could be provided as long as it was no longer than the five minute stipulated speaking time (and Wanda Jones was always strict about keeping to the time and used to set a timer and give the speaker a warning when the five minutes was nearly up). The response was that DVD could be provided.

If anyone were thinking of DVD for this meeting, then I would check first with Dr Lee. Also, since the meeting will be broadcast only as audio, initially, any DVD Testimony would possibly not want to rely too heavily on visuals or charts or PP type slides, as those listening live at home would not be viewing images.

 

[Nielk]

Just a reminder for people who didn't send in their written testimony yet but, wish to do so, the deadline is tomorrow Wednesday October 26 by the end of the business day. You can e-mail it to: cfsac@hhs.gov.

 

[JayS]

ME agenda, do you have any information on ME?
Do you think ME and CFS are the same?
Do you support the Coalition 4 ME/CFS proposal to code CFS to ME?
Are you concerned about this?

I'm going to say this as nicely as possible even though I'm not sure there's a nice way to say it.

Jill, you don't speak for me; you don't speak for me any more than the CAA does, or Pandora, or MCWPA, the IMEA, or any other org.

Your issue with ME vs. CFS was noted 5 million posts ago. We get it.

If ME Agenda has chosen to work with someone that I may not particularly like in another context, I have seen from her work for this patient community that I am willing to invest trust in her.

So consider this a respectful request to cut Suzy a little slack.

 

[Andrew]

I already submitted my speech, and don't feel like bucking the system to change it now. But if I could do two speeches, my second one might point out that:

With the discovery in Norway that Rituximab has dramatic effects in the treatment of Chronic Fatigue Syndrome, the DHHS should begin research that includes trials of Rituximab and research into why this is having such a profound effect on patients.

Anyone who likes this idea can feel free to steal it.

 

[Dx Revision Watch]

Andrew, if you are doing Testimony by phone and you have a few seconds left at the end of reading your Testimony, you could add it at the end.

 

[Dolphin]

I already submitted my speech, and don't feel like bucking the system to change it now. But if I could do two speeches, my second one might point out that:

With the discovery in Norway that Rituximab has dramatic effects in the treatment of Chronic Fatigue Syndrome, the DHHS should begin research that includes trials of Rituximab and research into why this is having such a profound effect on patients.

Anyone who likes this idea can feel free to steal it.

Sounds more like the sort of trial a drug company would pay for.

 

[Andrew]

The meeting is next week. Do we know yet which page to go to for the audio feed.

BTW, today I got my confirmation of the time slot in which I will be speaking by telephone. Has anyone here not received theirs yet?

 

[Nielk]

I got my time slot for oral personal testimony but, as it turns out, I'm feeling so sick that there's no way I can go. They said it needs to be confirmed by tomorrow end of business day. I'm thinking to ask if they can switch it to a phone testimony instead. I don't know how they work and if they can do that.

 

[Dolphin]

I got my time slot for oral personal testimony but, as it turns out, I'm feeling so sick that there's no way I can go. They said it needs to be confirmed by tomorrow end of business day. I'm thinking to ask if they can switch it to a phone testimony instead. I don't know how they work and if they can do that.

My guess is this should be fine. I think there may be precedents for this but am not focused enough on the events to know. Sorry to hear you're not so well.

 

[justinreilly]

Sounds more like the sort of trial a drug company would pay for.

the drug company has already said they won't do one. (their patent runs out in a few years)

 

[justinreilly]

The meeting is next week. Do we know yet which page to go to for the audio feed.

BTW, today I got my confirmation of the time slot in which I will be speaking by telephone. Has anyone here not received theirs yet?

i got a confirmation that they will let me know, but they haven't gotten back with a time slot.

 

[Andrew]

I got my time slot for oral personal testimony but, as it turns out, I'm feeling so sick that there's no way I can go. They said it needs to be confirmed by tomorrow end of business day. I'm thinking to ask if they can switch it to a phone testimony instead. I don't know how they work and if they can do that.

Contact them ASAP and check. If there are no more open slots, ask to be on the waiting list. The time I testified by phone, I was on the waiting list.

 

[Nielk]

Contact them ASAP and check. If there are no more open slots, ask to be on the waiting list. The time I testified by phone, I was on the waiting list.

I already answered them, asking for a switch to phone. I guess I'll have to wait till tomorrow for an answer.

 

[Nielk]

I already answered them, asking for a switch to phone. I guess I'll have to wait till tomorrow for an answer.

They answered me that they can accommodate me with a phone testimony.

 

[Andrew]

Anyone who has not received a time by now should probably contact them.

And FWIW, here's something I used to make sure my speech was short enough: http://www.online-stopwatch.com/

And now, I'll stop acting like a mother hen.

 

[Nielk]

Wow, thanks Andrew that's a great tool for timing!
I like you being a mother hen. Don't stop.

 

[Andrew]

Wow, thanks Andrew that's a great tool for timing!
I like you being a mother hen. Don't stop.

Well, the only other thing I found was I didn't have the energy to time the talk over and over again, as I cut more and more trying to get it below 5 minutes. I have text to speech software, so I had it read the speech while I timed it. After I cut the talk to well below 5 minutes, then I tried to see if I could read it myself just as fast.

 

[Nielk]

Well, the only other thing I found was I didn't have the energy to time the talk over and over again, as I cut more and more trying to get it below 5 minutes. I have text to speech software, so I had it read the speech while I timed it. After I cut the talk to well below 5 minutes, then I tried to see if I could read it myself just as fast.

That's cool. I have no such software. I have been cutting and cutting. It's not easy to keep it under 5 minutes!

 

[Jill McLaughlin]

I just received confirmation. Was not able to make it due to work conflict, but for anyone wishing to attend this is not acceptable.

And they want confirmation of acceptance by tomorrow or they'll give away the spot. I have an afternoon spot but could anyone switch for AM? Will cut it close for a meeting if they run over on time.

 

[justinreilly]

Unfortunately, Val will be away on business. anyone know anyone who will be in DC who can organize a protest? Maybe too late.