CFSAC Day 3 10/14/10

[Cort]

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.

That last part is the test for the CDC and Dr. Unger for me- are they going to pick up on Pacific Fatigue Lab findings, natural killer cells, immune dysfunction, etc. Are they going to invite Peterson to to learn about his subset and how he created it? That is the key for me. Mary Schweitzer did an amazing, (completely off the cuff by the way) presentation focused on the subset identified by Peterson. They can't continue to ignore decades of clinical findings in this disorder.

 

[Cort]

Nice explanation Hope. Thank you.
I thought part of what the committee might be getting at was the rumor??? that the FDA didn't approve Apligen because they said "They couldn't approve a drug for an illness that doesn't exist". I guess we're not the only ones who heard that rumor???

Nancy has a great point in the fact that our illness has never had clinical trials in regards to use of drugs for sleep, viral loads, cardiac problems. If a drug get's approval from the FDA for use in ME/CFS (I love saying that, grins) then it would go a long way to legitimizing the illness itself. Right now everything we get is more or less off label use. It's approved for use in say sleep but doesn't have the ME/CFS (that's so cool) lable attached to it.

I mean all the sudden Fibro get's a drug and my doctor keeps trying to tell me I have fibro.

Nancy scores again and again and again. I million people using all these different drugs and no clinical trials......hmmm...

Mary McGrory, Hemipherx's point person told me that the efficacy data for Ampligen is strong - they are focused on safety data because some toll-like receptor drug (which Ampligen is) blew up in the FDA face awhile ago - it actually gave some people an autoimmune disease - so FDA is very skittish about these drugs. Hemispherx, however, msut have decades of info on Ampligen patients - Nancy says they are all clean.

 

[Cort]

Who in the world has ask that ME be removed from the ME/CFS??? I really like the ME or ME/CFS.

Right on Dr. Jason and Dr. Levin!!!!!!!!!!!!!!!

We're going to be changing the name in the future to something with Neuro-Immune????

Wow did we just get renamed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You would be surprised. I was a member of the Fair Name Campaign to change the name to ME/CFS......there is virulent opposition in some quarters but that is the way is world is going. Either XMRV redefines this disease or it gets called ME/CFS. Great first move by Dr. Mangan.

 

[Andrew]

I like the fact that ME is first

 

[garcia]

You would be surprised. I was a member of the Fair Name Campaign to change the name to ME/CFS......there is virulent opposition in some quarters but that is the way is world is going. Either XMRV redefines this disease or it gets called ME/CFS. Great first move by Dr. Mangan.

The sooner the pejorative term "CFS" gets dead and buried the better.

Good riddance!

 

[RivkaRivka]

Great photos of the solidarity action at CFSAC meeting in Wash DC last wk: http://standup2me.blogspot.com/

 

[garcia]

Great photos of the solidarity action at CFSAC meeting in Wash DC last wk: http://standup2me.blogspot.com/

Thanks for that Rivka!

For what its worth I think it is outrageous for Wanda Jones to insinuate that it was the patients who messed up the webcast without a shred of evidence. I hope she apologises to you guys.

You helped liven up what was at times a very boring meeting for those of us watching on webcast.

 

[Gemini]

Rivka,

Wonderful photos, thanks for posting them!

Also, thanks for making your excellent video
part of CFSAC's patient's testimony for all to see!