FLASH: CDC/NIH using Wichita, Georgia samples

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markmc2000

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complaints, feedback

Here she is:

http://www.womenshealth.gov/owh/about/nationalstaff/wjones.cfm

Deputy Assistant Secretary for Health (Women's Health)
U.S. Department of Health and Human Services

Phone: (202) 690-7650
E-mail: wanda.jones@hhs.gov

I have sent her an email saying I saw her rudeness to Annette Whittemore and she owes both Whittemore and those of us watching an apology.

We need to start speaking up and letting these government agency people know that we see what they are doing and we are not happy about it. Even this woman's arrogant attitude tells us that they do not intend to treat this illness or us with any respect. These people are paid with our tax money. Why should we let this nonsense pass without comment?

Patricia
Maybe another idea would be too contact Kathern Sebilius, the new HHS appointee of barack obama. Maybe even call barack and the white house. Probably be best just to go over wandas head?

Mark
 

Summer

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On WPI facebook page, a person posted:

"I am here in Washington DC attending the CFS Advisory CoMmittee. Room is packed with patients, researchers and other stakeholders. Drs. Dan Peterson, David Bell, Kenneth Friedman, Fred Friedberg, & Annette and Harvey Whittemore are here. Advocates brought in green t-shirts with Fund XMRV in CFS in the front and in the back Fund WPI.Signs supporting the NEI Center are being signed up. I will take pictures later."
 
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Coffin says that XMRV is more like Feline Leukemia than HIV in that it doesn't mutate quickly and that makes it promising for a vaccine but not for anti-viral treatment. :(

He says 99% who have HIV eventually will get AIDS with no treatment, but, how many people who have XMRV have CFS? He says this is just one study, a good study, but there a volumes of information in which so much is not known.
Huh. Coffin just said that there ARE antiretrovirals that do work against XMRV. So don't worry just yet. :)
 

kamina

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Here she is:

http://www.womenshealth.gov/owh/about/nationalstaff/wjones.cfm

Deputy Assistant Secretary for Health (Women's Health)
U.S. Department of Health and Human Services

Phone: (202) 690-7650
E-mail: wanda.jones@hhs.gov

I have sent her an email saying I saw her rudeness to Annette Whittemore and she owes both Whittemore and those of us watching an apology.

We need to start speaking up and letting these government agency people know that we see what they are doing and we are not happy about it. Even this woman's arrogant attitude tells us that they do not intend to treat this illness or us with any respect. These people are paid with our tax money. Why should we let this nonsense pass without comment?

Patricia
No offense but I think you are blowing things way out of proportion, not to mention being a bit presumptive (to say the least) about Ms.Jones' intentions. She was simply following the rules which say the public who signed up to speak should be allowed to do so. In actuality, she was doing the opposite of what you are accusing her of - she was trying to be fair to the public who took the time and energy to come to the meeting to be allowed time to speak.

That said, I would have, as (the man whose name escapes me at the moment), allowed her to speak at that moment (and they did, and Ms.Jones did not seem have a problem with it).
 

Jerry S

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All I can say right now is wow. It was good to hear truth to power. It was the most exciting meeting I've ever seen.

Jerry
 

Summer

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There is no excuse for someone paid with our tax money to treat Annette Whittemore the way Wanda Jones did at the meeting today. How can we let Wanda's boss know how upset we are?
I think phone calls and emails must have been made, she came back with a much different tone in her wrap up. She was downright hostile in her tone, even if just keeping the rules, her tone could leave a different impression.
 

Finch

Down With the Sickness
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Hi All!

Thanks for the updates. I can't watch at work, but I can check in here now and then to do a quick read. I really appreciate it!
 

Forebearance

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CFSAC meeting

Yeah, I think Wanda Jones didn't intend to be hostile. I think she's just a bureaucrat. To her this is just another meeting. She's not emotionally invested in it like we all are. I'm really glad they figured out a way to "allow" Annette Whittemore to speak within their procedural framework. That was important! I mean, duh! lol
 
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Robin

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Yes, Rebecca Artman told us not to give blood, but she did it in a VERY insulting way. I don't know a single one of us that would go give blood as a "protest". We KNOW, and I think most all of us have ALWAYS known on a gut level to not give blood. sheesh (to her Anne, not to you)
Yeah, that was hilarious.

I gave blood frequently before getting ill. The Red Cross volunteers called all the time, and after I got sick they kept calling. Finally I described what was wrong with me to the volunteer in detail and explained that I wasn't sure if I could give it to other people. They never called again!
 

Andrew

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I am only able to read part of this thread. But we all know that too often politics trumps humanity. I hope Annette Whittemore has is consulting with a public relations firm, because this battle will not be confined to what is reasonable and humane.
 

Stuart

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Yes, Rebecca Artman told us not to give blood, but she did it in a VERY insulting way. I don't know a single one of us that would go give blood as a "protest". We KNOW, and I think most all of us have ALWAYS known on a gut level to not give blood. sheesh (to her Anne, not to you)
Actually I find this quite funny, if we have an "unwellness" that is simply because of an irrational belief system, then we should have no issue giving blood!

If they use the patient sample from Georgia which catches idiopathic fatigue based upon the Reeves "empirical definition," they are likely to "prove" we are safe to donate blood. They can't have it both ways!

If you knowingly have HIV and give blood it is a crime, if they don't confirm XMRV in CFS, what will they do?

If the NIH/CDC doesn't verify the result I would love a public "protest" of bringing their findings to a blood bank and saying I am donating blood regularly unless someone thinks I need to be tested for XMRV, but the NIH/CDC doesn't think I do. I need the money to pay for my CBT/GET.

Get a group of us, call the media!;)
 

caledonia

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If the issue with carving out 5 minutes for Annette Whittemore was taking away time from someone else already on the agenda - well, they wasted at least 5 minutes arguing over whether they could let her talk or not. I was like, just let her talk already.

I could see Wanda's point of view with sticking to the meeting rules. If you don't have some kind of rules at a meeting, it will quickly descend into chaos. I've been at meetings like that, and it's not pretty.

But anyway, I'm glad that AW did get a chance to speak.
 

Cort

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It was a little tense but Wanda Jones follows the rules meticulously when it works for us and when it doesn't. She's actually been VERY good to us; the videocast was entirely due to her. She's gotten the committee to be much better organized. If you give them testimony - even if you don't speak - its on the website.

They moved us into a much bigger room - with three camera men - it was very different.

Somehow we have a friend somewhere because she's really a cut above the others in what she can make happen. (Just don't break the rules!):eek:
 

hvs

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I think that the CAA f'ed the pooch badly in the first few weeks of the XMRV era, but if they get out in front of things and prepare the media for the fact that the NIH is using the Wichita and Georgia cohorts for their replication study (and, they claim, some WPI samples--though it was news to Annette Whittemore) they can redeem themselves.

Any guesses as to the rate of xmrv active infection they'll find in their dubious replication attempt?
 

Dolphin

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Any guesses as to the rate of xmrv active infection they'll find in their dubious replication attempt?
Well what do we think the rate is in "proper" CFS - 67%, 90%, 98%?

A little background: the CDC exclude a lot of people with proper CFS or ME/CFS from their cohorts:


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419502/pdf/1471-2377-4-6.pdf

Sample characteristics

One subject attending the clinic was dropped from analysis because missing data did not permit scoring of any factor in the SAQC. Demographic and clinical characteristics of the remaining 339 subjects in the sample are shown in Table 1 along with the distribution of these characteristics by fatigue group. Over half the fatigued subjects (145/ 277, 52.3%) as well as one not fatigued subject had exclusionary medical or psychiatric conditions identified during the clinical evaluation. Medical exclusions identified during the clinic visit included abnormal blood or urine tests, abnormal Romberg test, adrenal insufficiency, bladder tumor, BMI = 47, cerebral palsy, chronic hepatitis, emphysema, heart disease within 2 years of evaluation, hypertension, hypothyroidism, inflammatory bowel disease, kidney cancer, lupus, melanoma, uncontrolled diabetes, rheumatoid arthritis, self-reported sleep apnea and narcolepsy, and major surgery within the past year. Psychiatric disorders included anorexia or bulimia nervosa, bipolar disorder, delusional disorder, and major depressive disorder with melancholic features.
My guess is most researchers don't exclude hypertension (high blood pressure) unless it by itself could affect the specific readings in a particular study. But sometimes these things can be controlled for (e.g. being overweight can affect some readings but people are not generally excluded for being overweight unless they are very obese).

I think most biological researchers would have a problem excluding for "abnormal Romberg test" - some people think that is a good way to check for ME!

(There may be other things that are not good exclusions)

It might be because of these exclusions that the CDC found a prevalence of 0.235% but Leonard Jason found a prevalence of 0.422%.

So comparing the two CDC studies, the prevalence with the empirical criteria was 10.8 times higher (2.54% vs 0.235%). There was a slight shift in methodology (they invited in some unwell people who didn't fit the criteria on the phone but some did when they filled in the detailed questionnaires - CDC said this increased the prevalence by 11.5%. But it is questionnable whether these extra patients would have satisfied the "proper" Fukuda definition.

So perhaps only 10% of the Georgia cohort would satisfy the Fukuda definition. And the Fukuda definition is far from perfect!
So I could well see being less than 10% for that group ("plus" then the rate of XMRV in the general population for the rest of the population)

The CDC say 16 out of the 43 CFS empirical group satisfied the Fukuda definition (as normally applied). But 6 of these were previously excluded because they once had Major Depressive Disorder with Melancholic features (MDDm).
So I think it is better to say that 10 out of the 43 in the Wichita cohort have CFS (Fukuda) or 23.2%.
 
A

anne

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So I think it is better to say that 10 out of the 43 in the Wichita cohort have CFS (Fukuda) or 23.2%.
So, maybe that holds true for their Georgia cohort. Subtract those with an immune or mitochondrial disease that's not XAND and...

Hmm, I'll guess the NIH "replication" study will find xmrv in 15% of "CFS" patients.
 

Dolphin

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So, maybe that holds true for their Georgia cohort. Subtract those with an immune or mitochondrial disease that's not XAND and...
No, there is no reason to believe the proportions would be the same in both.

The Wichita two day cohort was an unusual group: around a quarter of those invited in had previously been diagnosed with CFS. But only 6 out of the 58 who had previously been diagnosed with CFS (in 1997/8/9/2000) were found to have CFS in 2003. That's when the CDC changed its criteria.

The Georgia cohort is a study on a proper random sample of the population.