About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, March 29, 2013

Friday Tidbits: Dr. Wolfe, Friend or Foe?

There is an old saying, "with friends like this, who needs enemies"?   Yesterday, this saying came to mind yet again when I stumbled upon an interview with Dr. Frederick Wolfe of the University of Kansas School of Medicine which appeared on news-medical.net/news/.  I know the name well.  Dr. Wolfe is a "well-respected" rheumatologist who was head of both the 1990 and the 2010 fibromyalgia criteria committees and has authored more than a few articles on fibromyalgia.  His forté is doing clinical research, typically with questionnaires and analyzing the data using statistical methods. 

Despite his impressive credentials, there is much in this published interview which I take issue with.  He describes the symptoms of fibro fairly well and is spot on when he tells us about the prevalence of fibro in the population.  However, he's made some statements which are questionable.  Wolfie just can't help being Wolfie, I'm afraid.  Bless his heart.  Examples of these are:

  • Doubting that trauma can cause fibro despite copious medical literature which links trauma and fibro in a cause/effect relationship.  This is especially disturbing since Dr. Wolfe wrote an article, published in 1994, entitled Post-Traumatic Fibromyalgia and in a subsequent article published in 1997, he wrote that trauma may cause fibro.  (Is there an inconsistency here somewhere?  Duh!)  
  • Stating that women have a lower pain threshold than men: is he kidding?  Does he not talk to women?  Has he never had a mother, a wife?  Has he never talked to a woman who's gone through labor?  Did he skip the ob/gyn rotation?  Had he not seen or helped in delivering babies?  Shame, shame, Wolfie!  You might want to think about taking that one back!
  • He spends a lot of time talking about psychiatric illnesses suggesting that fibro is a "physical symptom disorder," a condition that is a psychiatric problem which can be found in the psychiatrist's bible, known as the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), about to be published, despite great criticism, in May.  Does he really expect us to swallow this hogwash?  Has he forgotten or simply ignored the research that has shown, among other things, spinal fluid and muscle abnormalities in fibro patients?  This is not to say that some fibro patients don't have mental disorders BUT these psychiatric problems are on top of the fibro -  a far cry from labeling fibro patients as having purely psychiatric problems.  
  • He implies that fibro patients go to the doctor only to obtain disability benefits and to manipulate the system. Is he on crack?  What fibro patient doesn't want to get better?  In fact, some fibro patients are so frustrated with their lack of progress that they often go from doctor to doctor NOT seeking "drugs" as some may try to make us believe, but in order to find real help for real health problems.  To suggest that fibro patients are malingering and only out for money is insulting! Shame on you, Dr. Wolfe!
  • He said that "fibromyalgia represents a dominant theology."  This is just too bizarre for words.  What does "theology" have to do with anything in regards to fibro?  
  • He bashes the pharmaceutical companies for coming up with medications to treat fibro.  Again, the issue is money.  Somehow, in Dr. Wolfe's mind, the pharmaceutical companies are preying on fibro patients in order to make profits.  Does he not prescribe ANY medications for HIS patients? Urrr.... I don't think he actually sees patients other than to hand out one of his blasted questionnaires.  Yes, these companies do want to make profits, but they went to the trouble of developing and marketing medications that help a lot of people.  Does Dr. Wolfe work for free? 
Although Dr. Wolfe is considered an expert in fibro I truly doubt that he has practical experience in treating  patients.  Since he is the one who brings up money, I would like to see the sources of his income.  I'll wager that the bulk of his income comes from government and pharmaceutical company grants and not from providing direct patient care.  

So, having said all of this, who am *I* to "pick" on Dr. Wolfe?  

Well, prior to the 1994 Vancouver meeting, I'd been to quite a few conferences on fibromyalgia or had sources who had been to many meetings.  These were meetings where the doctors who came together were enthusiastic physicians who were seeing a "new" entity and wanted to get to the bottom of what was happening to their patients.  

A rheumatologist known to me did his fellowship under one of the, if not THE, foremost world experts in lupus.  When he decided to leave benchwork research for the world of private practice, he was overwhelmingly surprised that the patients inundating his office were not lupus patients but were patients presenting with some sort of new entity that he'd not seen much of before.  This happened to a lot of doctors of that era.  And that new crop of rheumatologists saw that something had to be done about this newly-developing illness/syndrome.  Thus was the fibromyalgia criteria committee formed in 1986 which culminated in the publication of unified fibromyalgia criteria in 1990 - yes, the ones that Dr. Wolfe was in charge of.

These doctors were our heroes, that is, the hero to those of us who suffer from fibromyalgia.  They were made fun of and mocked by their fellow (older) physicians.  I know of one incident where a plastic surgeon came up to a rheumatologist at a party and said, "so, just between you and me, do you really believe in this fibromyalgia thing or are you guys just trying to make more money?"  OK, so the plastics guy had had a bit too much to drink, but this is a great example of how these young rheumotolgists were treated across the board by other doctors at the time.  And, I must say: EXCUSE ME?  Talk about nerve!  We patients have had to put up with a lot of crud, but think about what those pioneering docs had to put up with! 

When I went to the Vancouver meeting, I was shocked.  Gone was the comradery.  Instead the place was divided and the tension was the proverbial kind you could cut with a knife.  Everyone was in the foulest of moods and I don't think it had anything to do with the fact that OJ had just murdered Nicole that weekend.

Today, Dr. Wolfe is "respected" mainly for one reason.  He holds the key to many grants.  This is called "sucking up" in most places.  Furthermore, the behavior on the part of Dr. Wolfe is the kind of behavior which has caused many other specialists in other fields to leave benchwork behind, knowing what sort of petty people are responsible for handing out the research dollars.  Frankly, I believe many (if not most) academic rheumatologists are afraid of crossing him, allowing him to spout off unchallenged for the most part. 

A wolf in sheep's clothing?  You decide. 

As always, I hope everyone's doing their best, only better.  Ciao and paka.

No comments:

Post a Comment