CCFS Advisory Committee Meeting - Will be Webcast Live

[patrick]

I keep on hitting from Switzerland. Hope this helps also!

 

[acer2000]

The Blood issue...

First of all, I am not sure why anyone who has ME/CFS, Fibro, or any "illness of unknown etiologoy" (including so called "autoimmine" illnesses like MS) would willingly give blood. Even disregarding what may or may not come of the XMRV discovery, just because they "don't know" doesn't mean it was at any time safe to give blood. Second, the Red Cross doesn't really let you give blood if you are even "feeling sick" in the week before you try to give. Or at least they aren't supposed to. This applies to people who have colds, flu, getting over an illness etc... Certainly CFS is "feeling sick" to the max, so I'd think that would exclude most people again... I suppose it wouldn't neccesarily exclude someone carrying a dormant pathogen with no symptoms yet, but if you already have ME/CFS it should exclude you.

But yes, they need to screen the bloodbank for XMRV. And if it turns out that XMRV was the pathogen they were looking at in the early 90s when their funding was yanked and we went another 20 years transmitting it via the blood bank, I really hope their will be reprocussions for the agencies involved. There are a lot of people that could have been saved from getting XMRV (assuming it causes a problem) in that 20 years if they had just taken this seriously.

 

[zoe.a.m.]

There's interesting discussion going on (by the chair) about possibly making the videocast available to the press in hopes that testimony would be televised. I'm not sure if that's something they can/will approve today, but I wonder if there's anything we can do to push this along assuming everyone agrees it would be valuable and the CFS/ME patients who testified would be open to it.

I'm still pretty unclear what exactly this committee can do, but it sounds like there is some definite resolve to be heard by the Secretary (Kathleen) personally, or at least to get feedback that their suggestions are at least being seen. How frustrating!

 

[greybeh]

That last comment made me smile. I really hope it can become available.

I've been wanting to watch, but I've been at work. I am glad for those who took the time to summarize. I've been very tired, lately - visiting your folks' site often for news. Thank you, all of you.

I try to pass things on to our Patientslikeme forum. The fibromyalgia group on PLM was just expanded yesterday to include CFS/ME patients. It's collecting data on those folks who have been tested for XMRV (listed on our profile icons). I hope it's OK to pass this along. I think this is really good news, and hope they are able to contribute to the body of knowledge.

 

[nina_online]

There's interesting discussion going on (by the chair) about possibly making the videocast available to the press in hopes that testimony would be televised. I'm not sure if that's something they can/will approve today, but I wonder if there's anything we can do to push this along assuming everyone agrees it would be valuable and the CFS/ME patients who testified would be open to it.

What he and Wanda were saying is that the recording WILL be archived on the site and will be available. (I don't have the link to that "past events" page but when I looked at it this morning it already had video from meetings as recent as Wednesday). Then he went on to say that maybe the committee could contact the press to let them know of the availabilty of the video and the importance of the topic.

Of course anyone with connections or influence could contact the media. What with the XMRV discovery and the potential blood supply threat it could piqu their interest. This would be a great story for the Washington Post to cover, given the need for immediate federal govt response and the widespread criticism of the CDC.

 

[Aftermath]

Threads Merged

I just merged the two threads on the CFSAC meeting. We had the same exact discussion going on in two places.

This thread will eventually get moved to the General ME/CFS News section instead of XMRV, as the former category is proper.

Excellent commentary by Rebbecca at 14:10 hours.

• Calling for Reeves' Head
• Calling for abandonment of the empirical definition
• Slamming Reeves for admitting bias before replicating the WPI work
• Arguing for the CFSAC to have a greater role in signing off on the CDC's five-year plan.

Really excellent stuff...

 

[zoe.a.m.]

Not to get off of the topic in your post

I just merged the two threads on the CFSAC meeting. We had the same exact discussion going on in two places.

This thread will eventually get moved to the General ME/CFS News section instead of XMRV, as the former category is proper.

Excellent commentary by Rebbecca at 14:10 hours.

• Calling for Reeves' Head
• Calling for abandonment of the empirical definition
• Slamming Reeves for admitting bias before replicating the WPI work
• Arguing for the CFSAC to have a greater role in signing off on the CDC's five-year plan.

Really excellent stuff...

But does anyone know what the "new medication" is that Rebecca referred to having started recently when Oleski made the off-the-cuff comment about how things were going slowly on her committee's end b/c of "chronic fatigue"?

Honestly, as I've been watching this meeting (yesterday and today) I'm shocked to hear anyone is getting medical treatment--I certainly can't find anyone to treat me medically!

I didn't realize there was a second thread; makes sense as to where everyone was!

ETA: If you go to the original link posted to watch this webcast, you can see prior webcasts that are available for viewing. I imagine within a week, this meeting will be listed (chronologically I believe) in its entirety.

 

[Advocate]

Lucinda Bateman just read her departing statement. It was one of the best things I heard these last two days.

 

[Min]

youtube videos being posted here:

http://www.youtube.com/profile?user=Khalyal#p/u/4/JIlqxT-bl_w

 

[Robin]

Lucinda Bateman just read her departing statement. It was one of the best things I heard these last two days.

That was incredibly touching, especially about her sister. I can't imagine her grief and loss, they seemed to be close.

Her statement really drove home the point to me that CFS is not only a burden to patients and families but to the physicians who choose to treat it. The fact that she has to work two jobs to pay her staff, is often in the red, and can't get health insurance for herself really shows what a professional sacrifice it is to choose to treat CFS patients.

 

[leelaplay]

Thanks Finn. Yours is probably the correct number.

Hi Advocate - I'm not sure if it was 880 or 888 webcast listeners yesterday - with this live-time posting, hadn't seen your or Kim's number. (888 would be better for the superstitious - 8 is a lucky # for the Chinese)

Wanda Jones is extremely impressive. SHe kept everyone on track. You can see she's the glue behind the scenes.

THe webcast was her idea and she made it happen.

In her closing remarks she fervently said "the call to service is taken seriously by many of us"

She spoke of this meeting being full of hope and enthusiasm.

She expressed great appreciation of patient presence in person, on video, written submission and watching.

She advised bookmarking the cfsac site. All written testimonial will be available(I believe she got some up last night). The minutes will be available (not sure if a transcript will as well) and the webcast will be available asap

5 new members in January
She will ensure same selection criteria used this time to get such fantastic experts on committee is used again.

She said all emails to CFSAC are read. I'm going to write to tell her of my appreciation for how well she fulfills her role and seems to do all she can in the civil service to help CFSAC get rid of"this scourge" as she called it

Contact info:
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
cfsac@hhs.gov (Email)

 

[dannybex]

Cort or Mike's testimony...

Does anyone know if Cort Johnson's speech or Mike Dessin's testimony has been posted on Youtube yet?

Thanks,

Dan

 

[Advocate]

When the outgoing members were speaking I had the same sad feeling I have at the end of an Olympics, without the dancing girls.

Thank you to all from this list who attended. I am very grateful for that and grateful that I was able to see this two-day meeting at home on my computer.

 

[leelaplay]

I'm toast again today. Carry on, you guys! I'm enjoying reading your posts.

Jerry

oh Jerry - would you quit it with the breakfast references? You're making me hungry

Hope you're resting well if

(and referring to another post - why am I not surprised your brother is a rocket scientist?)

 

[leelaplay]

When the outgoing members were speaking I had the same sad feeling I have at the end of an Olympics, without the dancing girls.

Thank you to all from this list who attended. I am very grateful for that and grateful that I was able to see this two-day meeting at home on my computer.

I so agree Advocate.

It's times like these last 2 days that I'm so aware of how the computer and the internet have changed the world!

 

[Dolphin]

Good to hear the UK's Professor of Psychiatry Peter White criticised - he has taken most of the UK taxayer's research funding into ME/CFS whilst calling it an 'abnormal illness belief'.

Anyone know who said this? This was posted around just after the end of the first set of testimonies. I'd love to hear who said it and what they said. I have the recordings but don't have the time or energy to listen to them all.

 

[leelaplay]

letter of appreciation to Wanda Jones

Don't know if anyone is interested, but I was very impressed by Wanda Jones and feel thankful that the CFSAC has the guidance of such a caring, efficiant bureaucrat.

Attached is the email I sent to the CFSAC at cfsac@hhs.gov

Hello,

I am writing a quick note of appreciation to Wanda Jones and her "gigantic" staff. I have ME/CFS and am exhausted from watching the 2 day meeting. But so thankful that I was able to watch it due to Wanda's efforts to get it webcast. And for soon getting it, and the written submisions, minutes and transcripts posted so that I can access the parts I was too tired to process.

So thank you for that. Also for ensuring that the rules were followed and running such an efficient, on time meeting - not an easy matter I know!

And finally for your closing comments. It was very encouraging to hear your comment that "the call to service is taken very seriously by many of us." Your passion and compassion were evident to me.

Government is byzantine in my opinion. The ME/CFS community and the CFSAC are fortunate to have a civil servant who cares, who is knowledgable, who works hard behind the scenes to help the scenes to help navigate a path through the maze of government so that the CFSAC recommendations start to get acted upon.


Sincerely,

xxx

 

[bananaman]

Anyone know who said this? This was posted around just after the end of the first set of testimonies. I'd love to hear who said it and what they said. I have the recordings but don't have the time or energy to listen to them all.

http://www.youtube.com/watch?v=WUDyby8A7tI

Give that one a go Tom she mentions Peter White and the Oxford Criteria about 1min 50secs in

 

[anne]

Does someone have a list of the recommendations they made? I caught a little of it and Rebecca seemed to be making a recommendation to can Reeves. Did that make it on?

 

[Kati]

Does someone have a list of the recommendations they made? I caught a little of it and Rebecca seemed to be making a recommendation to can Reeves. Did that make it on?

yes it was approved- they didn't use the same wording-