I thought that perhaps the NIMH might actually care what someone who really had a mental illness was interested in as a research topic. Or that at least that they would pretend to care.
I e-mailed them last week with a suggestion for a research topic. I stated that I have bipolar disorder and currently take Zyprexa. I will soon be getting to the age at which I have to decide whether or not to go on hormone replacement therapy. I would really like to know if hormone replacement therapy would increase or decrease my chance of getting tardive dyskinesia, and there doesn't seem to be any published research on this.
So I think that this would be a really good research topic. More and more people are being prescribed antipsychotics. The population is aging. Older women are the most susceptible to tardive dyskinesia. I realize that this probably can't be done as a randomized controlled trial- it would take too long, you can't blind people for 10 years as to whether or not they are taking hormones or not, etc. But it must be possible to do some kind of retrospective study.
I got this long, very legalize type response. First, they cannot give me medical advice- I should talk to my psychiatrist or another health care professional. They cannot discuss the safety of drugs- that is the purview of the FDA. And they cannot influence the topics of mental health research outside of the peer review process- that would be seen as prejudicial. If I want to see my concern addressed by research, I need to contact a researcher who might be interested in doing that sort of research. They did give me a web site that could help me identify researchers.
Well, I did find 2 researchesr whom it might be worth contacting- but I am not holding up great hopes. I e-mailed one of them yesterday. He is not really looking at tardive dyskinesia, but rather the effects of atypical antipsychotics on older adults, primarily metabolic effects. The other researcher- the only one I could find who is actually working on tardive dyskinesia- doesn't seem to be studying it in human beings.
What I find disturbing is that there isn't research being done (at least that is funded by the NIMH) on preventing tardive dyskinesia in human beings. I would think that this would be a big priority. But I am just a mental patient.