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 (https://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.