Teflon Woman

October 27, 2009

Posted by Cort Johnson

With her smile and her ingratiating matter Dr. Hanna is the NIH’s Teflon woman for ME/CFS. As Dr. Reeves punches up his next dazzling 20 minute PowerPoint presentation Dr. Hanna throws her few tidbits into the mix and shuts up. It’s remarkable how little interest there has been in what is arguably the most important federal institution for chronic fatigue syndrome (ME/CFS)

She has shaded the truth repeatedly yet she is rarely taken to task. After she told us that no more Centers of Excellence were being built (one reason why we couldn’t have one) we saw COE’s going up right and left.  She promised to reinvigorate intramural group on chronic fatigue syndrome  but all that group did was take a lot of funding that was purportedly on ‘chronic fatigue syndrome’ and spend it on other things. The Roadmap Initiative she promised several years ago simply disappeared without a trace. Ditto with a privately funded effort we heard about a year ago.

At the last CFSAC meeting she broke off in mid-answer to a panel member’s question to begin chatting to the person beside her – an astonishing breach of etiquette. For a person who’s overseen the biggest decline ever in ME/CFS funding ever she’s entirely too comfortable.

Not A Friend to ME/CFS? Even so she’s been thought to be a friend to ME/CFS. She’s knowledgeable and she cares or at least she seems to. Not long ago Dr. Hanna and the Office Of Research on Women’s Health (ORWH) did something that brought even that into question.

A little background is in order. The Office oversees multidisciplinary studies on a variety of women’s health disorders. They are primarily a facilitator (not a funder) of medical research. There is one disease, however, – and only one disease – that they are completely responsible for – chronic fatigue syndrome. In fact it’s the only disease listed prominently on the ORWH’s home page. The ORWH has been the stopping place for research efforts on ME/CFS at the NIH for the past eight years.

Big Opportunity – With the enormous Obama stimulus package landing on the NIH’s door step the ORWH, like all the Offices and Institutes, began jockeying for its share of the cut. Like everyone else the ORWH was asked to come up with specific ‘Challenge Areas’ they could earmark for a quick influx of funds. They were asked to fit their proposals into broad categories such as ‘biomarkers ‘, clinical research, genomics, health disparities, etc. - all hot topics in CFS.

Big Opportunity Missed - The ORWH came up with a wide variety of funding opportunities but none for ME/CFS (http://orwh.od.nih.gov/recovery/index.html) The ORWH’s response, in fact, made it impossible for chronic fatigue syndrome projects to receive funding under this aspect of the stimulus package. For some reason the ORWH decided to ignore the only disease it has sole responsibility for. It’s as if the Heart, Lung and Blood Institute decided not to fund heart disease. One wonders what message it sends to the rest of the NIH community when your home agency won’t even go to bat for you.

This came at a very bad time. The CFID’S Association of America and Dr. Vernon have been working hard for months to come up with a proposal that could take advantage of this once-in-a-lifetime opportunity When they got to the last step in the process – the easiest step – simply finding a place to put their proposal -there was none at the ORWH.

That lead to – as you can imagine – a rather heated exchange between CFIDS Association President Kim McCleary and Dr. Hanna, after which Dr. Hanna promised that she would create a place for us. The first question to ask, of course, is why she needed to be asked? What is our only employee at the NIH is doing there if not this?

Judging from the ORWH website Dr. Hanna hasn’t kept this promise any better than many of her others – according to that website there’s still no place for a CFS grant proposal at the ORWH.

The CFID’s Association of America did find places for it’s grant proposals – in other agencies.  Always with the NIH and the CDC listen now to what they say – they are masters of saying the right things – but watch what they do: they do very little.

Dig Deeper! – the Alpha Dog

10 comments

{ 10 comments… read them below or add one }

Keith... October 28, 2009 at 5:08 am

I wrote a letter complaining about all of this to the ORWH after reading this Blog entry. Maybe we all should. Thanks for all your hard work Cort keeping us updated on the truth of what is happening in the government agencies that we the citezens are supposed to be the boss.

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meghan Shannon October 28, 2009 at 6:37 am

Dr. Pinn and Dr. Hannah, have truly been the stop gap to research and money to be given to CFIDS/CFS(USA name) They are at the NIH in Bethesda Maryland.

The only thing that kept the CFS committee from being thrown out with all other committess during the 2nd Bush years was that we hung in the wings on the web-site, but nothing was done.

This office does have the money to give to different researchers, they chose to ignore us.

The good news is that DHHS/ OWH/ Deputy Director Dr. Wanda Jones has been involved with the committee from the sidelines, even when we we supposed to go to them 9 years ago.
Dr. Jones has a personal and profesional interest in helping us and is doing a great job.
It only took about 10 years for us to get to the DHHS/OWH, after Dr. Lee left but we are there and now with Dr. Oleski and the great group on the committee, we have hope.
Especially with Dr Peterson and many others who have kept going to these meetings waiting for the political climate to change and other things too.
meghan

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Keith B... October 28, 2009 at 8:56 am

Meghan
How is Dr. Jones doing a great job? I’m not disagreeing with you. I just haven’t noticed any changes she has brought about. From the above blog it seems little has changed from her influence.
Keith

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Kathy October 28, 2009 at 1:54 pm

I think we need to write to people at all levels. I’d like to compile a list of addresses to send my letter but I’m to sick to do it. Does anyone have a tree of how all these organizations are related? I think we should add Michelle Obama to the list. We need someone at the top.
My letter would say we need funding for XMRV research. No federal organization has figured out how to research or fund CFS/ME, but Whittemore Peterson Institute did. Now they need much more money to test treatments and how it is transmitted… The CDC, NIH, ORWH have all let us down. They did not apply for stimulus money in this underfunded disease. We need a new center within NIH? with oversight. We need a champion at the top.

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meghan Shannon October 28, 2009 at 5:58 pm

Well for one she took the meeting from behind closed doors and put it on the international WEB for all to see. That was her first meeting. I think she was hired on to be DHHS person with Dr. Oleski 2 months before. That is pretty darn good.
She transcribes the meetings completely with out editing. When Dr. Lee left people who helped run the meetings edited the testimonies.

And she got at least One recomendation to the Secretary that we want, I cannot quote it right now as I am a little bleary eyed, getting ready to be up at 5 AM my time to watch the 2nd meeting that will be broad cast around the world.
There is more…I am more wanting to sleep now and watch what happens tomorrow.
meghan

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Keith... October 28, 2009 at 6:09 pm

Thanks for the info. I get so frustrated by the the diminished funding at the NIH that I have a hard time feeling like anyone makes a diffeerence at that institution. Sounds like she’s trying to help.

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meghan Shannon October 28, 2009 at 6:15 pm

I forgot to add that Jean Harrison worked really hard with making the meetings available to the public. She is a patient activist who doesn’t give up, and on this issue she didn’t give up. meghan

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John October 29, 2009 at 12:31 am

Yeah, she(Jean) deserves a whole lot of credit and thanks for pressuring for the videocast. Who would have thought when she was doing all she did that today we’d get to see Dr. Peterson kicking ass and taking names live on the internets! Annette Whittemore is scheduled to speak, all the patient advocates are scheduled to speak, and we get to see it first hand instead of waiting months for the meeting minutes to come out! Way to go everyone!

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Denise October 31, 2009 at 9:40 am

During testimony on Thursday I was annoyed (well, I was more than annoyed but I do want to keep my words printable) to see Dr. Hanna rolling her eyes at some things that were said. The body language was not pretty.
During the webcast on Friday I believe I heard Dr. W. Jones saying to Dr. Hanna that she (Jones) did not know about the Banbury conference until Hanna was already at it.
Is communication between these people that limitted? I don’t know and hope someone else has the answer.

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cort November 2, 2009 at 7:43 am

Communication between virtually everybody in this field needs improving. Its astonishing how little the different groups talk to each other. I’m not surprised about the CDC/NIH not talking – traditionally they hate each other and Dr. Hanna and Dr. Reeves can barely talk to each other. It’s also true on the other side; the WPI, HHV6 Foundation, CFID’s Association, IACFS/ME, CFSAC – all have communication problems; we would they would be in close contact with each other – they’re not. I have heard complaints about every one of these organizations not communicating with each other – that really needs to improve.

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