Tuesday, March 31, 2009

Please Ignore The Man Behind The Curtain...In The Land Of OZ, Facts Are Not Important...

I didn't see it...but I've read and heard about. The interview is *all the buzz* on the Multiple Sclerosis wave/Short Bus!

I'm talking about the March 17th Oprah Winfrey Show (Big "O", as I fondly refer to her) where she interviewed Montel Williams and Dr. Oz. Now, before anyone sighs a big yawn and says, "For the love of gawd, I'm sick of reading/hearing about this!" (because I know I'D be doing that right about now), please understand I am neither writing about Big "O"'s ignorance of MS NOR Montel's interview. I accept Big "O" for what she is (a mega star/billionaire, richer than me) and I have nothing bad to say about Montel (dude with MS trying to become richer writing books). I am solely here to betch slap The Wizard of OZ, AKA, Dr. Mehmet Oz into tomorrow. And, contrary to his statements during the above mentioned show, I plan to back mine with researched fact and my own personal voodoo twist stemming from 23 years of psychiatric experience...ahem. So let me begin and let's get this over with.

Yes, I AM going to talk about Multiple Sclerosis and SUICIDE. After all, I DO know a bit about both topics. So let me preface this post with the following statement:


Yes, I said it. Sue me. No jury would convict because I've got statistics on my side. But, for the legal record, let me quote his EXACT statement during the interview:

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide. "Folks just cannot take it," Dr. Oz says. "It just eats away at you from the inside." Direct from the Big "O's" website so there's no mincing of words here.

Good grief...where do I begin? WAIT! I have a profound idea!!! How about I begin with research and statistics?!?

Well...golly, Miss Molly. There's just not been a whole lot of research done when it comes to MS and suicide. "Why?" you ask, with puzzling look upon your face. That's because most mental health/suicide statistics focus primarily on MENTAL DISORDERS and suicide/lethality post mortem assessments. There is no standardized national or international data base that tracks suicide rates in relation to one particular physical disease or another (death, yes...suicide, no). And most funding for these expensive and long-term studies is awarded toward the monitoring of MENTAL ILLNESS as a premorbid factor in suicide...because let's face it...you'd HAVE to be mentally ill to kill yourself, right?!? Again...ahem. Tell THAT to any doctor assisted suicide voter in Oregon or Washington states.

The few research studies that HAVE been done date back to 1985, 1993, and 2003...and two of these three studies were conducted in Sweden and South Wales...small countries in funding and size compared to the USA, who continues to statically boast a most likely OUTDATED statistical count of people diagnosed with MS within it's borders - 400,000. That's been the MS head count for well over 10 years...but, I'm not going to tackle THAT figure here either, even though I disagree with the numbers (based upon current diagnostic availability, improved treatment modalities supporting longer life spans, etc., as compared to 10 years ago).

In 1985, a study was conducted in South Wales among 441 death certificates collected for more than 20 years of MS patients. This study found the median observed survival time for these MSers from symptom onset to death was 38.0 years (let's see...I was diagnosed at age 38 + 38.0, means I could live to be 74?!?...dear Lord, somebody call Dr. Kevorkian! I don't think I WANT to hang out until 74. LOL)...men and women in this study lived to a mean age of 65, with only a negligible 1/10th of a difference noted for women living with MS slightly longer. In 57.9% of those studied post mortem (dead), cause of death was related to MS...42.1% had cause of death unrelated to MS (and 27% of these patients didn't even HAVE MS on their death certificate,even though they HAD MS!). The most common cause of death was respiratory disease - 47.5%. **Journal of Neurology, Neurosurgery, and Psychiatry 2008;79:1016-1021**

What the 1985 study concluded was, MS patients were almost 3X's more likely to die prematurely relative to the general population...but NOT from SUICIDE. (Give The Oz one point for identifying loosely "respiratory disease" as a common cause of death in MS - but NOT necessarily SUFFOCATION!) So, back to SUICIDE and MS...

In 1993, the National Center for the Study and Prevention of Suicide got a tiny little grant to study a sample of 24 MS "subjects" who had completed suicide (this is in the USA, peeps). They compared 22 MS "subjects" who had made nonfatal suicide attempts along with 22 non-suicidal MS "subjects"...math says (or calculator) this was a total of 68 MS "subjects" - 24 who were deceased with cause of death deemed suicide. Not a HUGE collection of "subjects" if you ask me...but they didn't, so I'll go on.

The results of the above study indicated that suicide completers were more likely to be male (and BTW, males routinely choose far more lethal means of suicide, such as hanging, fire arm, or jumping, while women OD, slit wrists, etc...this is from my OWN practical 23 year experience and, based upon my belief women routinely don't like to leave a mess...seriously.), unemployed, experiencing financial stress, and who USED A GUN TO COMMIT SUICIDE (see? Told ya so). This study goes on to say MS suicide completers were also more severely disabled, in a late stage/phase of MS, and who displayed signs of unendurable psychic pain. **Neurorehabilitiation and Neural Repair, Vol. 7, No. 2, 53-62 (1993)**

And now, on to where most of the websites get their wide range of quoted statistics when referring to the elevated suicide risk among MS patients...you may have noted (but I doubt it...few people want to READ about MS and suicide!) on many websites, there is a discrepancy in figures regarding just how "at risk" MSers are to commit suicide...usually ranging from between 2X to 15X more likely to die from self-inflicted injury, AKA, suicide.

In 2003, **Fredrikson, S., Cheng, Q, Jiang GX and Wasserman D (2003), Neuroepidemiology 22:146-52.** did a little study in Sweden. They felt that results of previous studies of suicide risk among MS patients were inconsistent (duh!)...so they did their OWN. During the years 1969 and 1996, they looked at hospital patients (some 77,377 admissions and 12,834, where MS was recorded as a primary or secondary diagnosis at time of discharge)...and they followed these cases for approximately 10 years (9.9 mean, to be exact). They then linked these cases to the Swedish Cause of Death Register and found 5,052 had died during the course of this study...90, of which, were deemed to have died from suicide (1.8% suicide rate)...of that 90, most committed suicide within 5.8 years from the time of discharge from the hospital (it is not clear WHEN they were diagnosed with MS specifically in the study).

These investigators calculated the risk factor for suicide as a cause of death in THIS particular study was 2.3 times greater than the general population...in both male and females (although males once again demonstrated a significantly higher rate than females). Of important note is, "suicide risk was particularly higher in the first year after initial diagnosis of Multiple Sclerosis and this occurred most frequently among YOUNG MALE MSers". The mean age of successful suicide among the 90 dead was 44.5 years old (whew! I passed that, but I'm STILL eyeing that "74" age lifespan up there with a *fish eye*)...55% of all these 90 suicides were committed in the first 5 years after the first admission to the hospital with an MS diagnosis. So, yes...we're all keenly aware (those of with MS, that is), that first year of diagnosis is a BETCH...and the next five aren't so sweet either!

So...here's my bone of contention with you, Dr. Oz. You are misquoting scientifically studied DATA and proven fact. Yes, it IS true those diagnosed with MS have a higher incident of committing suicide than Joe Blow Healthy off the street. But suicide is NOT found to be a number one or two or even three cause of death among MSers! Yeah, we "just can't take it" as you are quoted to say...but still we DO...every day until we die, the majority of us...and NOT because of suffocation as you were so inaccurately quoted to say. We die from the same cancers, heart disease, strokes, ebola, cat scratch fever, and CRAP everybody else croaks from.

Yes, it IS true we have a higher risk of contracting "other" diseases because of our immune systems (often compromised by medications, etc.) and our sometimes decreased mobility (which makes us more susceptible to pneumonia's, blood clots, etc...because we just aren't moving around as much sometimes, in comparison to Joe Blow Healthy). But MS is (most often speaking here) NOT THE PRIMARY CAUSE OF OUR DEATHS...it is a secondary FACTOR/DISEASE CONTRIBUTING to the cause of our deaths. Even the all-knowing-all-seeing-corner-of-MS-Society...THE NATIONAL MS SOCIETY...has issued a statement (far nicer than mine), saying your blatant misinformation sucks...check it out here...and I don't usually quote ANYTHING they say because of religious philosophical differences...they think they're God and I don't. LOL

So, in conclusion, I'm rather fortunate I DIDN'T see Montel crying or the Big "O" actually saying she didn't know much about MS or Dr. OZ pulling such crap statements out of his arse no one even needed to smell his fingers to know where his statistics came from! I might have become HOMICIDAL...and there just AREN'T any statistics about Multiple Sclerosis and homicide...but, I might have started a trend...LOL...


Tricia said...

Thank you for setting the record straight! Sad how many people take everything they see on Oprah as gospel isn't it?

Kelley said...

Ah, my dear, lovely BRAINCHEESE. THIS post is one of the many reasons I love you so much. I am so glad to find that I am not in the minority regarding this broadcast. I'm just pissed that your rant is so much better than mine! ;)

Seriously, please send that entire post to the Oprah show. They should know they are wrong (I'm looking at YOU, Dr. Oz!).

A nationally-syndicated talk show that reaches millions of people a day has some responsibility for the material they shovel out during the course of a show. (Kelley getting off soapbox.)

BTW, why no love for the NMSS? You can e-mail me the answer to that one!


Miss Chris said...

Good post! I must admit I was surprised at what went on during that interview. I'm no Oprah fan either and picked an interesting day to watch it!

Webster said...

Ooh - another lovely Braincheese rant! I live for these days! Okay, not really, but it is nice to see that you seem to be back in top form! Did you figure out who borrowed your memory? It's nice they returned it not much the worse for wear.

I agree with Kelley, you should send this post to Oprah along with a nice note, and maybe she'll revisit the topic with a different spokesperson/s who better represent the face of MS. Wouldn't it be great if you and Lisa got a free trip to Chicago? Two such articulate models of living with MS!

Montel was probably the poorest choice she could have made, IMO.

Blindbeard said...

Call Dr. Kevorkian! That's a hot one! I love it and wonder if he will help me out too.

pedestriancrossing-Colleen said...

I'm glad I didn't watch the show. Having the dx for a year I don't need depressing and WRONG info. But I worry about my family and friends who DID watch the show "so they could understand" my disease. Now they have to "worry" about me suffocating or committing suicide.

Until there is a some sort of central reporting database like the CDC for all MS dxs I don't understand how ANY statistics can be generated.

harkoo said...

Please send your essay to Oprah! If you get an invitation to go to the Oprah Show to be a model of a person living with MS, include me! I would like to be the face of an MS woman living with a disability....this wasn't even talked about on the Oprah Show! I don't think Montel could handle that; he would be rolling his w/c in front of a bus..
Not only that, but what about the MS pain factor Montel cried about--he doesn't take any pain meds? The whole interview was baffling...Joyce

Cathy said...

The only "O" I want to reference is the standing O ( Ovation) I am giving you for doing this post. Well done! I saw the interview and could have done without the sobbing Montel. Thought I was going to lose my lunch.

Spaz Attack said...

Ok, start throwing your tomatos & crap at me. I DO like Oprah and watch it regularly. Nope, don't think she's god or hang on every word, but I enjoy many of her shows. Normally I DO find Dr. OZ informative, but I DO think he missed the marked regarding MS.

However, I DO believe suicide rate among us MSers is high. I've known and heard of too many, "my Uncle had MS and committed suicide when he became unable to work," or went in a nursing home, etc. stories. My first and second years of diagnose and struggles I was very suicidal -- to this day, since I'm unable to enjoy life to the fullest (at least my definition of it) I welcome death and view it as relief from the pain -- or even side effects of meds.

I myself have come close to suffocating a few times this winter. Not, I think, from my MS hug (which is constant), but when the air's been so cold and damp I could see my breath my chest muscles (Ok, alll my muscles) became so tight I found it difficult to breath and REAlly did think,"Wow...am I going to stop breathing and die now?" I've never experienced that sensation before.

Before seeing that O show I didn't realize I really could have suffocated from my chest muscles (which I'm guessing includes my heart muscle) slowing down and tightening so I felt as if I was in a vise clamp. It was awful and exhasted me crappy body.

Four years after diagnose I've come to a bit of acceptance so I'm not dwelling on suicide. I still believe it's high up there as a true cause of death (even though the death cerficate might read complications due to MS, pnemonia, depression or WHATEVER.

This definatly ain't no gift -- I have MS and it DOES HAVE me in it's grip.

How ya feeling these days LD?

have myelin said...

If I ever get on Oprah, she and I will have quite a few spats. That is all I will say...today.

Blindbeard said...

Hate to comment twice, but I can't help myself. Spaz Attack and I are on the same page! I had 2 other family members with MS, one died of "complications" and the other commited suicide when she was unable to care for herself and was heading for the nursing home. I sooo agree about the relief of death -- it seems like such a peacful and painless thing, sign me up!

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