An Interview with a Fibro Pioneer & Specialist

Recently a reader made a remark about tender points and fibromyalgia - that she was convinced that there were a couple of tender points around the ankles.  I'm not sure whether or not she was joking - as in "it sure feels like there are tender points there!" - or whether she was serious. And so I went to my so-called "anonymous source" on so many things fibro, pain, all things immunologic and rheumatic, and so forth. 

I finally decided that I'm losing a lot of information I can write about because I've kept my big source in fibro so shaded in mystery.  So, I've come up with a compromise of sorts, as well as an opportunity that my readers may well enjoy: 

• First, give my source's qualifications
• Ask him a few questions point blank, i.e. an interview
• Tell you that perhaps I can talk my fibro doc into answering some of your questions. I suppose I'd have to be the judge of which questions to ask, based on how much relevancy they have to most readers and where this blog is intended to "go." (And BTW: I love the twitter remarks but they do get lost so questions are best posted here.)

And so without further ado: what are the qualifications and certifications of my source?

Well, this doc went to undergraduate school in NYC and turned down Harvard in order to enter the MD/PhD program at NYU - where the government paid HIM to try this "MudPhud" program, not sure anyone could handle it. (MudPhud, get it?  It was a derogatory term given to the super nerds by the guys who were there because of their fathers being physicians.)  His PhD is not in some dinky field like "basketweaving in Bornio" but in immunology and he had around 15 papers published before graduating.  He presented many papers in the States and once in Denmark in his student days and won several national research awards.

Internship and residencies were done at the prestigious NYU/Bellevue program and then he went on to do a fellowship in St. Louis, studying under one of the foremost lupus specialists in the world.  His wife pointed out to him that he didn't have the personality for research at an ivory tower (too much his own person to go about begging for grants) and convinced him to go into private practice instead.  There he discovered, much to his shock and dismay, that patients were coming in with strange symptoms of something he'd seen before, "fibrositis," but had pretty much put on the back burner in his fellowship days.

And so it went. He was asked to serve on the committee which established the criteria for fibromyalgia, which took three and a half years to create.  (The youngest person on that committee and in private practice to boot!)  Blah, blah, blah.  Since then he has published in many peer-reviewed journals, asked to give feedback on other rheumtologists' manuscripts/books, has had chapters published in several medical textbooks. He served on a certain pain academy for 15 years in positions on various boards.  (OK, I'm getting bored with all of this!)

He's lectured in and presented his original research in numerous American cities as well as several cities in Canada, England, France, Denmark, Australia and quite a few others.  He has patients who come to him from all over the United States, Canada and a few from Europe.

Yes, he IS board certified in Internal Medicine, Rheumatology and is a Diplomate of the American Academy of Pain Management.  He is a contributing editor to a musculo-skeletal pain journal for which he writes a regular column.

He was also elected a Fellow of the American College of Physicians (FACP) as well as a Fellow of the American College of Rheumatology (FACR).  His practice has been officially designated a pain management clinic by the state in which he practices.

(I'm exhausted.  Someone shoot me. We're not anywhere near the end of the stuff the man has accomplished!!)

So skipping right along: finally, he also does quite a bit of medico-legal work, appearing in court as an expert witness.  

NO more!  On to our question at hand!  (I do have my limits!)

Upa:  Hi, Doc!  Well, you just heard what I've written about you.  Hope you approve.  And you also know what my question for the day is.  What is it with the tender points and fibromyalgia?  Why do we who have fibromyalgia often feel as if there are more than the 18 classic tender points we see on charts?

Doc:  Fibromyalgia is, as you and as your readers know, a widespread pain condition. The patient often hurts all over so it is not unreasonable to assume that there could be many tender points in many locations.  There is a reason why the American College of Rheumatology committee chose the 18 tender points used as one of the criteria for fibromyalgia.  High power statistics were employed by the committee to determine which tender points are most COMMONLY found in fibromyalgia.  That is not to say that they are the ONLY tender points, but rather if patients have those tender points the likihood of fibromyalgia being the diagnosis is very high. 

Upa: So, if I understand you correctly, your committee must have had talks as to where the most important or prevalent tender points were located and which would be included in the final criteria?

Doc: Of course!  In doing the research for the criteria, many other tender points, other than the classic 18 tender points, were noted to be present in the patients who were the subjects of the original fibromyalgia criteria study.

Upa: Wait a minute, please!  Who were these subjects?

Doc:  Each author was asked to submit information on 10 of his patients as well as info on 10 controls.  The control group consisted of patients who did not have the diagnosis of fibromyalgia, but had other common rheumatological problems, like degenerative arthritis or gout - painful conditions, but not conditions that cause widespread pain.

Upa: Thanks!  Sorry to have interrupted you but you know me and tangents.  So, you were talking about the tender points?

Doc: Yes.  You have to understand that pain is subjective, as is pain tolerance.  Therefore, I don't think you can say definitively that a patient with 18 tender points has worse fibromyalgia than a person with 15 of the classic 18 because they may have many other tender points causing them grief but those tender points were not including in the classic 18.  Furthermore, there is a degree of error when applying the criteria which have a specificity and a sensitvity of somewhere between 80% and 90%.  This is actually very good for biological and medical research but not as good in fields such as physics and chemistry.  To put it simply, the criteria are very reliable, but not perfect. So, the diagnosis of fibromyalgia remains a clinical diagnosis. 

Upa: Despite the new criteria put forth by the 2010 committee?

Doc:  Oh, you know which buttons to push! [Upa says, "Thank goodness there's not a gun in the room!"]  And you also know that's a subject for another day!  

Upa:  Oh all right. I know.  But seriously, I do thank you for your time and expertise.  I hope we can find an opportunity to look at another aspect of fibro at a later date, though not too far into the future! 

*******

So, my dear readers.  I hope you found this interview informative. I did!  

And as always, I hope everyone is doing their best - only better.  Ciao and paka! 

NOTE: remember to submit general questions for possible future posts.  Please understand that they can't be too specific as our source is not your personal doctor, has not examined you and all the other qualifying statements which are understood!  Thanks! 

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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.