I had the pleasure of meeting Dr. Mangan at the ME/CFSAC. I sent a thank you note per the request of The Time for Action Campaign. There is an important message in his reply. Would someone in the know please comment about his reply? What can patients do?
"Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support"
Dennis F. Mangan, Ph.D.
Co-Chair, Trans-NIH ME/CFS Research Working Group
Brown Eyed Girl, this is the standard reply his office is sending out to those who have "thanked" him.
There has been a great deal of debate about whether to pursue this campaign further. I have come down on the side that until we see what would amount to a sea change in NIH policy, I will continue to demand action. This is the post I sent Dennis Mangan this morning:
Dennis,
The word is that you are a kind, compassionate man, who genuinely wants to help. And I believe that. But you are employed by an institution that has marginalized, denigrated, but mostly ignored this population, depriving it of both credibility and research funds. As you know, we get $5 million dollars a year, which amounts to very little in real terms.
ME because of the stigma of not being a "serious" disease is a dead end for careers in the academic world, which is driven in large part by how much money a staff member can bring in and how much cachet accompanies it. The answer to this for m.e. is zippo. Not only won't it fill the coffers, but if you attempt to address the illness, you will not find yourself clasped to the bosom of the administration. Don't take my word for it, ask the heroic Ken Friedman of the NJ school of medicine and dentistry.
This community is aware that there are those who would bury the Science article if they could. If Judy Mikovits hadn't been so well connected. I doubt you would even be on the case. This time, however, the game is up. Many of us are aging, emboldening us to a level of passionate activism never seen before in the community. My particular sun is quite high. I'm 57, sick for more than 2 decades: m.e. has devoured my most productive years. I appreciate your attention, but I am not a sentimentalist. I and others will not stop emailing until we see a genuine good faith effort to radically transform the research and treatment landscape.
I have no doubt, now, that the truth about what happened will eventually emerge, like the findings of US experimentation on hapless populations here and abroad. This is an epidemic that has hid in plain sight, whose seriousness was derided and ignored by the institution you are employed by. As far as I am concerned the NIH, while not as horrendously destructive as the CDC towards us, colluded in one of the major coverrups of the 20th century, so good words, warm smiles really don't cut it.
On Oct 21, 2010, at 10:03 AM, Mangan, Dennis (NIH/OD) [E] wrote:
Dear ....
Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! We need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support! Dennis
Dennis F. Mangan, Ph.D.
Co-Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women's Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006
MORE RESEARCH AND CLINICAL TRIALS NOW. FUND THE WPI.