Saturday, June 09, 2007

Depression and PD - Where's the Beef II

I can't tell you how tired I am of hearing folks who are part of the Parkinson's disease (PD) research machine (who, almost by definition, do not have PD) skip, tra la, right by the need for a symptomatic therapy that works, and I am talking about the cardinal, or defining, symptoms, i.e., motor symptoms, for anywhere near as long as the average life of the disease.

Instead, they are out there funding studies of depression in PD - well, I have asked an authority on that subject, Paul Wicks, resident researcher for PatientsLikeMe, based at King's College Hospital/Institute of Psychiatry in London, to point me in the direction of any study that provides evidence that depression is a symptom of PD and guess what? There is no hard evidence, or even middling evidence, and yet $2 million in his lab alone has been committed to studying this totally unsubstantiated phenomenon. I would link to his response but one must be a member of PatientsLikeMe to access the site, so I am pasting it in below, instead:
In terms of the evidence most of the studies so far have been observational studies of the symptoms of people with PD as compared to say other older people with a diagnsosis of depression.
He did not provide any references.

The dollars available to fund PD research are far exceeded by the quantity of possible research to be funded, and that means there is an additional cost to funding any given study, and that is the opportunity cost of not funding some of the gazillion other possible projects.

That $2 million could have been spent on looking for treatments that would allow us to move freely again, to be pain free, to smile, to play the piano, to work, for pete's sake - treatments for phenomena that are so clearly symptoms of the disease that two or more of them must be present for a diagnosis of PD.

To pour $2 million into the study of a completely unsubstantiated phenomenon could hardly be categorized as the best use of that precious money or time, with "best" defined as the most likely to bring new improvements to the quality of life of PWP, the most quickly.

That, of course, is from the perspective of someone with PD, a perspective that, to my knowledge, is not represented at all, certainly not in any formal capacity, anywhere, in the making of funding decisions.

1 comment:

Dirty Butter said...

I have bouts of depression, but I do agree with what you are saying. I wouldn't get depressed so easily if my PD symptoms weren't causing me distress. Spend the money alleviating symptoms and looking for a cure!!

I’ve been out of the blogging loop for some time now, but if you have the time, I have a favor to ask of you. At the request of a reader, I have a new post discussing some of the symptoms I had over the years that may have been early undiagnosed signs of Parkinson’s. I’d appreciate it if you would add your comments to that post, as I think it could be a very useful topic for PWP to share.

Earlist UNDIAGNOSED Symptoms of Parkinson's Disease??