CFSAC Day 3 10/14/10

[jspotila]

Dear Lord, someone make that music STOP! :headache:

(unless y'all like it in which case it's just me)

(obviously I have not had coffee this morning)

 

[RivkaRivka]

that is absurd that wanda just said that the protesters are teh ones who made the the videocast flawed yesterday.

it had nothing to do with the protesters. it was the videocast company that messed up (missed the first 19 minutes and the last 20 minutes)

 

[RivkaRivka]

I JUST SENT THIS...

Dear Wanda Jones,

I am very grateful to you for all you do, but I was shocked to hear you say at the start of the meeting that the protesters and their movement in the back of the room were the reason the videocast was flawed yesterday. And then you complimented the video company, which shocked me even more.

I really think your assessment was off. I watched the whole videocast and there was no noise from the back of the room, none. And it was the videocast company that messed up -- they cut off and missed the first 19 minutes and the last 20 minutes of yesterday's session.

Thank you again for all you do. But I needed to tell you that your assessment was not correct.

Rivka

 

[RivkaRivka]

is anyone watching? beth unger is hard to watch.

 

[Hope123]

I missed the very beginning...........very early here and mornings are not good at all for me.

But I'll write Dr. Jones once I see the video so I can see exactly what it says.

Unger's answers are mostly government double-speak. She's talking about "mind-body" connections (Is this a scientific conference or am I at a yoga retreat? Glaser was talking about something similar Day 2 but at least that was about Centers of Excellence.), stress, early childhood trauma............she says some vague statement about how some biological illnesses are connected with "early childhood trauma." I'd like to ask "which biological illnesses?" And don't give me the "depression has a biological basis" talk! The only excuse I can give her is that she is the acting chief and is a pathologist (i.e. relatively little direct patient care). I really, really hope CDC gets a chief better versed in CFS.

Well, the proof is in the pudding as CDC has not managed to pick up on so much of the biological findings covered by Chris Snell, Nancy Klimas, Gudrun Lange, etc.

 

[August59]

They just said Stewart LaGrease(!) is joining the "working group" at the NIH. Did we know that?

 

[August59]

NIH funding guy said "I do not want t talk about funding, I want to talk about getting more researchers to submit for funding".

 

[George]

So instead of talking about what they are funding right now which would make them look awful they want to do the razzle dazzle about how A- it's everybody else's fault cause them horrible researchers don't apply for the money and B- tell us how wonderful they are and how much the have done for us.

There has been a lot of that at this CFSAC, self congratulations for all the hard work that people have done so much for the ME/CFS community. And yet we are still exactly where we were last year and the year before that and the decade before that.

I have found this entire CFSAC meeting sicking, literally.

 

[Hope123]

Hah, Dennis Mangan is saying how e-mail campaigns take energy away from the things they need to do...........................translation: they're feeling some heat. However, he is offering himself (or did NIH offer him up?) to answer e-mails in the future for NIH.

[Contact Information:
Dennis Mangan, PhD
Acting Co-Chair, Trans-NIH CFS Research
Working Group, OD, NIH
Dennis.Mangan@nih.gov
301 402-1770
Website (under renovation): http://orwh.od.nih.gov/cfs.html]

 

[glenp]

doccument

All I can get is the doccument on the right side - and no video

 

[George]

can you get sound glenp?

 

[George]

Hah, Dennis Mangan is saying how e-mail campaigns take energy away from the things they need to do...........................translation: they're feeling some heat. However, he is offering himself (or did NIH offer him up?) to answer e-mails in the future for NIH.

[Contact Information:
Dennis Mangan, PhD
Acting Co-Chair, Trans-NIH CFS Research
Working Group, OD, NIH
Dennis.Mangan@nih.gov
301 402-1770
Website (under renovation): http://orwh.od.nih.gov/cfs.html]

I'll be hanged before I send all my correspondence to one person to brushed off and file 13ed. It's good that we are starting to cause them some headaches. Personaly I don't know how some of these people sleep at night. And heck we don't so why should they.

 

[George]

Wow the MAPP network is the basis for how CFSAC needs to build their network and dang it the NIH needs to fund it!

That guy is great.

 

[pictureofhealth]

I posted this on the White House Chronicles (under Media) thread, re funding research, but it might be relevant here.

"It was very revealing, as Dr Plotz (from the NIH) points out (during the television interview), that allocation of NIH money for research is led by the number of scientists interested in an illness or pathogen, or the degree of scientific interest generated by particular avenue of research which encourages researcher groups to apply for grants - not the number of desparate patients in need, or the degree of devastation caused by an illness, or the numbers of dead and disabled, or the economic or social, implications of not treating it and ... etc .

In other words, if an illness catches the interest of a scientist group because it is 'fascinating' or 'cool' to study, or 'scientifically sexy', or perhaps because there is a chance for academic prestige or a Nobel - then it stands a chance of getting studied and funded, because more scientists will send in applications for grants.
In other words, no one is serving the interests of patients or the public here.

Well I guess it was obvious really - but it just shows how back to front the system is. Made me furious actually and muttering expletives under my breath which are totally unprintable ... "

ie. I guess we have been pitching to the wrong people all along, or perhaps not in the most effective direction.

Perhaps we need to be politely pitching directly to scientists, academics and Universities with biomedical research facilities, to get directly interested in this field - they will then pitch the Government and federal bodies for allocations of funding and grants for their proposals. (Witness Dr Coffin's comment/request for XMRV specific grants at the 1st XMRV Conference last month, to maintain the research impetus in XMRV).

This all starts with the individual scientists, not the Government or the NIH.

 

[George]

What was the ladies name in the very end? Cause she just made my day. It's great to know that they are working to put this crazyness to rest.

Heehee this guy on the working group sounds like he is telling the CFSAC folks hey look here's how ya do it. (grins)

Dr. Glaser's right where has the NIH been for years??? Now if he would just get off his hobby horse!

 

[waiting]

George, that wonderful lady's name is: Catherine Laughlin, Ph.D.
Chief, Virology Branch
Division of Microbiology and Infectious Diseases
NIAID, NIH, DHHS

 

[glenp]

geez dang doh

i better turn this off--- cant hear either can only see posters

ok we'll see if that guy answers emails I already sent him one asking what he gonna do????

(my last faxorama got returned)

Hello Glen, There was an error sending your fax to (301) 402-3573. Multiple attempts to dial the number failed. Your reference ID for this request is #177999. Best Regards,FaxOrama.com Support---they must have turned it off?

My brain if way off for this stuff!

 

[Sasha]

What was the ladies name in the very end? Cause she just made my day. It's great to know that they are working to put this crazyness to rest.

What did she do? What did she do? Can't see a thing here, having to wait for the YouTube version (if they do one). Desperate for some good news from this - it has sounded awful so far.

 

[Hope123]

Wow the MAPP network is the basis for how CFSAC needs to build their network and dang it the NIH needs to fund it!

That guy is great.

Yes, that was a good talk even though he isn't working directly on CFS. It's also good he doesn't speak in a monotone and appears to have some energy! I also like that he was just upfront that no one knew the etiology and there were no good treatments for IC -- why can't the CDC just admit this for CFS?

For those who don't know, there were 3 Centers of Excellence for CFS in the late 1990s-early 2000s (University of Miami (Klimas), University of Medicine/ Dentistry New Jersey (Natelson), and University of Washington (Buchwald)). Cort brought this up during his testimony and a few years ago, I tried to find out why funding for all three centers was cut after 3 years and came up with no answers from anyone.

The women from NIAID talking about XMRV studies with Dr. Lipkin is good and her name is Dr. Catherine Loughlin, Chief of the Virology Branch.

 

[waiting]

What did she do? What did she do? Can't see a thing here, having to wait for the YouTube version (if they do one). Desperate for some good news from this - it has sounded awful so far.

She discussed the discordant XMRV study results from the last year and she said one of the key questions for their group to find out is why XMRV is being found in such high percentages in CFS patients and much lower percentages in healthy controls (among the positive studies), never mind the wholly negative studies (she said mostly non-US, where US results were mixed).