Bitchin': Online Support Groups And Odds And Ends

An interesting piece on online support groups for all manner of health conditions from the Orlando Sentinel. John Grohol from PsychCentral is quoted and offers a bit more on what is now such a phenomenon of the Net that the mainstream media is now paying a bit of attention. What interests me is just how rapidly such groups--and, peripherally, that includes blogs such as this one--have grown in the last few years. In the mental health world, a lot of credit for this should go to Grohol who started PsychCentral back in 1995 and had been online more informally on old BBSs and such in 1991.

I think that the reporter misses a few components of what's driven online health groups and websites--especially the patient-run ones--and that's that the software to run these things is cheap (sometimes, it's free), that broadband access of some kind is readily available in most urban areas in the US (and is fairly cheap compared to what bad old dial-up once cost), that decent high speed computers are much cheaper than in the past, and that people love nothing more than to bitch with--and at--their neighbors, virtual and real, about health. And politics. And sports. And food. And whathaveyou. And that patients often know as much about what works for them medically as does your average doctor, specialist or generalist. I say that in as un-arrogant a way as possible (I know such talk pisses off some docs and healthcare types), but it's clear to me that there's a place in America's--and the world's--healthcare paradigm for peer specialists, as opposed to something like WebMD.

The Net is strangely mirroring human reality.

Think I am joking? The other day, I ran into an acquaintance who's had some recent battles with depression. This person strikes me as someone who could use some good old fashioned therapy, but that's not what their employer's medical insurance is down for--six therapy visits a year is laughable, and all too common, coverage--and so they were sent to a physician's assistant and the PA put this person on Effexor. As a first choice. Yikes. When the patient had a crappy reaction to the drug, the PA put them on Wellbutrin and ordered the Effexor stopped without tapering. The patient had all the usual problems with Effexor withdrawal--could barely think, for one--and then the Wellbutrin made them "manic" and then the PA had told them they had bipolar disorder, owing to the classic anti-depressants-spin-up-bipolars phenomenon which is now apparently passing for a diagnostic tool in some quarters. Yikes!

I asked some questions. I criticized the PA--PA's can prescribe in my state--for turning to one of the worst anti-depressants to begin a new patient on. And for fucking up taking the patient off it, for saying the withdrawal symptoms would be masked by Wellbutrin and then using the whole affair as a tool to tell someone they have a lifetime disability and need to take medications for the remainder of their lives. It was clear to me that the patient had not been manic--no hospitalization, no bizarro delusions, etc.--but had experienced something that was either hypomania or medication-induced hypomania. There had been no massive psych crisis going on. One of those cases that present to PCPs and the pharma companies describe as bipolar disorder 2. And off the patient goes with a script of Zyprexa or Seroquel or Paxil or Effexor. And a year later is wondering why things are still messed up.

"You need a second opinion," I told this person. And pressed them to go see a real live specialist of their choosing. Therapist, psychiatrist, whatever. Someone who knew how to diagnose and was a bit less aggressive with their gun slinging. Pay for it out of pocket if you have to, I told them.

I seriously doubt this person would've gotten such advice from WebMd or some pharma-sponsored site like depression.com. Which really operates as a portal to pills.

Grohol also writes about Google and Microsoft's plans to tap into users' obsessions with health and offer some kind of personal medical software. Or something. It's a bit unclear what they are after, but these guys will chase any advertising portal that opens up. Much as newspapers and radio and TV have. John's somewhat dubious of their plans. So am I. What amuses me is that some of my near-neighbors are inevitably working on the technology--and that they are out of their minds if they think millions of Americans want to put such details online. Blogging is one thing. Putting your medical history online in bankbook detail strikes me as something else. At least for the average person.

Speaking of average, here's a patient diagnosed with bipolar disorder concerned about muscle spasms they've developed after taking Risperdal at 1 mg. for five months. I've said it before and here goes again: atypicals should not be used long-term except maybe for people with actual chronic psychosis--and that ain't bipolar disorder most of the time--because they just cause too many problems for too many patients. Muscle spasms, EPS, TD, diabetes, weight gain. Fun stuff like that.

Speaking of problems, here's a mother of a 10-year-old who's been diagnosed with ADHD, oppositional defiant disorder and, now, bipolar disorder. 125 mgs. a day of Seroquel plus Adderral. We live in quite a world these days.

Which brings me the fine Experimental Chimp blog popping AstaZeneca for an interesting editing job on Seroquel's Wikipedia entry. I wonder how much pharma companies pay marketing types to go around and do that sort of thing.

All of which shows you that at same point, the pharma companies will always try to impose their edits on user-run medical information.

Yeah, the Net and computing have sure grown up in the last few years.