Watch CFSAC meeting online Monday 9-4 EST May 10

[citybug]

I would have like to record it. Can anyone tell me how you do it?

 

[txfriend]

Wasn't that Dr. Hannah of the NIH...later, she gets really angry!

 

[citybug]

Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.

Oh no, I think Wanda Jones needs to read some science articles.

 

[Hope123]

Wasn't that Dr. Hannah of the NIH...later, she gets really angry!

I found Dr. Hannah's comments about her experiences working at ?Mass General to be non-productive. This was when Dr. G. Marshall brought up the idea that when he was a med student, HIV started out looking like a gut disease (Gay Bowel Disease, anyone?) but expanded soon to something much, much bigger so he was concerned about the same happening to XMRV/ CFS. Lady, this isn't about you! It's about a bunch of very sick people and potentially to-be-soon sick people. I can only excuse her by imagining she is having an out of the ordinary bad day. Too much government double-speak and legalese by Dr. Jones/ Hanna in the afternoon despite the efforts of CFSAC members to re-focus the meeting.

Also I caught the tail end of Dr. Unger's presentation so will have to watch it later on archive but her statement on how people with CFS have 2 times the risk of metabolic syndrome (which is a combo of high blood pressure, high cholesterol, diabetes increasing risk of heart disease/ stroke,etc)? I was like, "Duh!" You have a bunch of sick people who might otherwise not have metabolic syndrome if they had the energy to buy/get/cook healthy foods and who can't exercise, what do you expect? Focus, people! You want to handle the consequences of the illness rather than the illness itself? On the flip side, I do think long-term studies are needed in CFS, just not sure how good the CDC will be in doing them if their record continues in the same way.

 

[_Kim_]

I hope that the recommendation to add Christine Williams (the Director for Strategic partnerships at the Agency for Healthcare Research & Quality (AHRQ)) as an ex officio member is passed.

She offered her agency's help and resources a number of times today and Nancy Klimas remarked about her contributions during their working lunch. I hope we get to keep her.

Has the CFSAC ever had an ex officio member who was also a CFS patient?

 

[starryeyes]

I was sitting here watching but my cell didn't ring. Too bad I can't afford a landline. There isn't a number to call into is there?

I did submit my comments in writing but they haven't been posted yet.

Edit: never mind!

Oh what a shame, Justin. So sorry. We were all looking forward to hearing you. You were getting big cheers in the Chat Room!

(((hugs)))

starry

 

[JT1024]

Wanda Jones

Info on Wanda Jones:

Principal Deputy Assistant Secretary for Health
Biography of Wanda K. Jones Dr.P.H.
Principal Deputy Assistant Secretary for Health
U.S. Department of Health and Human Services

Dr. Wanda Jones is the Principal Deputy Assistant Secretary for Health in the Office of Public Health and Science (OPHS), U.S. Department of Health and Human Services. She was appointed to the position in November 2009.

The Office of Public Health and Science is charged with leadership in developing policy recommendations as they pertain to public health issues that cut across HHS agencies and operating divisions. The OPHS coordinates research, programs and policy activities among its 12 core public health offices and various HHS components. As principal Deputy ASH, Dr. Jones actively participates in the Department's efforts concerning global health, disaster recovery, Healthy People 2010 (and 2020), and a range of other issues managed within OPHS.

Dr. Jones has long been recognized for her leadership in the federal and state public health communities. From February 1998 until December 2009, Dr. Jones was the Deputy Assistant Secretary for Health (Womens Health) and the Director of the Office on Women's Health, also within OPHS. In that capacity, Dr. Jones emphasized the elimination of health disparities, addressing HIV/AIDS, supporting women with disabilities and helping women have better access to healthcare services and programs.

During that same time, the HHS Coordinating Committee on Women's Health, led by Dr. Jones, supported initiatives to address womens health issues such as cardiovascular disease, diabetes and obesity, lupus, breastfeeding and mental health. Prior to joining OWH, she served as the Associate Director for Women's Health at the Centers for Disease Control and Prevention in Atlanta.

A Penn State graduate in medical technology, she has worked in an inner city blood bank and its hematology laboratory; in a small town hospital as its night shift technologist and then as its microbiologist; and for a state public health laboratory as a laboratory improvement consultant. She obtained her doctorate in Public Health Laboratory Practice from the University of North Carolina.

Dr. Jones joined CDC in 1987 as an HIV laboratory trainer. In 1990, she became the Assistant Director for Science in the Office of the Associate Director for HIV/AIDS, where she was active in policy issues related to HIV laboratory testing, women and AIDS, HIV vaccine development and health care workers.

 

[JT1024]

Leonard Jones, PhD

Leonard Jason, PhD - ME/CFS Researcher and Bridge Builder

by Kristy Katzmann
September 3, 2007

Leonard (Lenny) Jason, PhD, is Director of the Center for Community Research at DePaul University in Chicago. Recently Vice President of the International Association for Chronic Fatigue Syndrome (the IACFS/ME), and now a member of the federal CFS Advisory Committee (CFSAC), Dr. Jason has been a key driver of CFS research since 1991, and is uniquely positioned to support collaboration between CFS researchers, patients, and government decision makers.
In 1989 Leonard Jason, PhD, was a full-time professor of psychology at Depaul University and a successful researcher with a knack for obtaining research grants. Then his life took an unexpected turn when he came down with mononucleosis. As the weeks went by, Dr. Jasons physical and mental exhaustion persisted to the point where he knew something was seriously wrong. My functioning level was so low that some days I could only make a phone call for 5 minutes and thats all the energy I had, he recalls.

At that time, he left his job for a little over a year and traveled the country looking for answers, trying to understand what was happening to him and what he could do about it. I immediately and actively sought out peoples opinions and I read lots of books, he says. I traveled to different locations and I worked very aggressively trying to figure out what was going on. He came to accept that he was suffering from a condition known as Chronic Fatigue Syndrome (what he now refers to as ME/CFS).

Dr. Jason returned to his work at DePaul University in 1991, but he was still feeling the effects of ME/CFS. I am one of the fortunate ones, because I previously had a very strong career and I had lots of grant money that was still coming in, so they wanted me back, he explains. If I wanted to work 1 hour a day or 2 hours a day, they were going to let me come back; so I had that encouragement and support that most people dont get.

Continues here: http://www.prohealth.com/library/showarticle.cfm?libid=12838

 

[_Kim_]

I hope that the recommendation to add Christine Williams (the Director for Strategic partnerships at the Agency for Healthcare Research & Quality (AHRQ)) as an ex officio member is passed.

She offered her agency's help and resources a number of times today and Nancy Klimas remarked about her contributions during their working lunch. I hope we get to keep her.

Has the CFSAC ever had an ex officio member who was also a CFS patient?

In case anyone else wants to thank her for her participation today:

Ms. Christine Williams
Director for Strategic Partnerships
Office of Health Care Information
Agency for Healthcare Research and Quality
U.S. Department of Health and Human Services
540 Gaither Road
Rockville, MD 20852
Phone: 301.427.1850 begin_of_the_skype_highlighting 301.427.1850 end_of_the_skype_highlighting
Fax: 301-427-1873
E-mail: christine.williams@ahrq.hhs.gov
Web site: http://www.ahrq.gov./

 

[justinreilly]

Oh what a shame, Justin. So sorry. We were all looking forward to hearing you. You were getting big cheers in the Chat Room!

(((hugs)))

starry

Thanks for the hugs and kind words! I will make my voice heard so no real loss; just regret that the couple of minutes Dr. Jones was trying to call me ate into the precious little time we had as a patient community. Looks like we'll get more time in the future if that amendment passed so that's good.

 

[justinreilly]

Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.

Yes, I thought she would know better. I mean then why research XMRV in prostate cancer since we're not guaranteed beforehand that it will be the sole cause of prostate cancer and someone will want to study RNAse L in prostate cancer instead in a few months? And then if in a few months the prostate cancer research community wants to study RNAse L does NIH deny funding because of the possibility that someone will want to study another aspect of prostate cancer down the road? Just a nonsensical comment.

 

[kit]

Finally towards the end of the second half....One doctor said how come we can't stretch the funds for CFS, because we have XMRV which is huge. And Wanda jones said maybe in 6 months it wont be XMRV anymore it will be abcd...or something else. That comment has up set me. I felt it was a careless comment.

I agree villagelife. Overall I think Wanda does an excellent job. She listens carefully, responds thoughtfully, and moderates well. I think she is a great asset to our cause, but that comment was careless. I wrote her a letter today letting her know this. She can be reached at:

Wanda Jones
Office Of Women's Health
200 Independence Ave. SW
Room 712E
Washington D.C. 20201

 

[shannah]

In the afternoon session Leonard Jason made a couple of noteworthy references to just how disabled many of us are saying we are "one of the most disabled groups of any chronic condition".

I know other doctors have made various statements to this effect but it's always comforting to hear that the dedicated men & women sitting on this committee really do 'get it'.

 

[jspotila]

I hope that the recommendation to add Christine Williams (the Director for Strategic partnerships at the Agency for Healthcare Research & Quality (AHRQ)) as an ex officio member is passed.

It was passed. Dr. Jones's office had drafted a revised charter which was included in the committee members' binders. Dr. Jones went through the changes made in the proposed version, and it included adding someone from AHRQ as an ex officio member. They voted to approve that charter in the afternoon, and then were voting on various amendments. I don't have the actual text, so I don't know if Ms. Williams' position is actually listed as the ex officio member or not.

I agree that Ms. Williams made several contributions to the meeting, and she and the HRSA representative seemed to be very engaged on ways they can assist the committee.

 

[FernRhizome]

Does anyone have an address for Wanda Jones? I'd like to send her something and wondered how to do that. Hard to believe this meeting was so uncertain in new information six months after the last truly amazing meeting. But if the government has steps to put in place if the XMRV & blood supply issue turns out to be a go, that's a good sign. I mean, they wouldn't mention that unless they thought it was needed?

 

[Jerry S]

Hi FernRhizome,

Dr. Wanda Jones' email address is: wanda.jones@hhs.gov

Kit gave her mail address above in post #92

 

[flybro]

great youtube videos of the meeting , way better than my attempt.

http://www.youtube.com/user/jasonj59http://www.youtube.com/watch?v=DkEbYQHHUuw

 

[sarahg]

here are some of my notes in case anyone could not/cannot access any of the video. My brain is mush so this is pretty much the way I wrote it down, apologies if any of it is unclear

Dr. ? Koh- assistant secretary DHHS
*wants to come to as many meetings as possible
*wants to act on as many previous reccommendations as is feasible
*will brief Sec. Sebelius
*eager to learn about cfs,xmrv
*wants to improve direct communication about rec.'s -will do that himself
*had direct discussion w/ head of NIH about centers of excellence being implemented
* quote "we need to start making a difference"

Dr. elizabeth Unger- acting head of CDC CFS program
*new division "div. of high consequence pathogens and pathology" not sure how this fits in with or replaces or is part of CVDB? anyone understand this more?
*new lab space
*9 publications since last meeting
*empirical definition? she claimed it was the SAME as fukuda at one point
* quote "needs to be validated and shown to the community at large".
*maybe willing to change it?
*she was involved in the broadening of the definition, thought the number (4 m.) would be LARGER than it was.
*but also says be careful not to include those who do not have it.
*stands by 4 million people having it.
*(these are the things I scrawled in the margin while she was talking about the recent research and the definition..."yuck, bad cohort, all your s**t should get thrown in the trash, you all need to be fired") that's not part of my summary, really, you should just ignore that.
* quote, "nothing's obvious in CFS"
*trying to use social stress tests to ID subgroups measuring cortisol and lymphocyte changes in stressful social situations.
*L. Jason asks why use that and not something like excercise.
*her response is that they tried exercise and wanted to try something else. (my margin commentary- "come on"...followed by some cursing)

Dr Jerry Holmberg, blood safety update
*working towards serological assay
*of the negative studies- standardized methods will level the playing field
*CDC primary source of info on CFS to the blood committee (also NIH, FDA, others)
* believes they will be proactive as more info surfaces, will not wait and wait and wait for definative proof.

Sorry I did not get as much on Holmberg, got a phone call in the middle of it.

 

[caledonia]

How to record - you use video screen capture software. I use SnapzproX for Mac. Not sure which one would be good for PC.

 

[flybro]

cheers caledonia,

this guys has edited them into understandable short clips.

i'll still keep putting up all that i have as someone may want to lsien to it all, but i think i've lost about 20 minutes.