October 2006

Morgellons Money

In August 2006, Mary Leitao, the inventor of the Morgellons appellation and founder of the Morgellons Research Foundation, came under some scrutiny for lack of accounting for monies donated to the MRF.  She had this to say:

“It has been the most bizarre situation,” Ms. Leitao said in an interview. “We’re talking little, tiny chunks of money. I will tell you, the year 2004, there were $318 worth of donations. And $100 of those came from me. I donated a check to my own foundation to jump-start us.”

 Yet, three month’s earlier, she had personally signed the 990 tax form for the year 2005, which listed donations of $17,165 and expenses of $2,819 and $1,715 on a new computer listed as an asset.

Why then did Leitao attempt to characterize the money involved as “tiny chunks”, when clearly thousands of dollars are involved? 

The 990 form is available here:
(Free registration required)

Apparently $10,000 was donated by one person, who was then not able to get any information as to where the money went.

Morgellons and Dermatologists

Three interesting articles on Morgellons in the Journal of the American Academy of Dermatology this month, the first two are free:

Morgellons disease: A rapport-enhancing term for delusions of parasitosis, Murase, Wu and Koo.

Morgellons Disease? Waddell and Burke

And one you’d have to pay for:

The Challenge of Morgellons disease, Koblenzer

Here’s an excerpt of the Koblenzer article:

Today, the informed dermatologist may be anywhere from doctor number five to number ten or more in this patient’s search for relief, and the patient will, in the interim, have raised both heaven and hell in a frantic attempt to solve the problem that has literally taken over his or her life. Today, the internet further complicates an already difficult situation, as we see in the two letters in this Journal, as our patients share every facet of their condition, every theory as to cause, and every attempt at relief, however far-fetched, with their fellow sufferers.

This sharing, and a tremendous amount of suffering, have given rise to the formation of “The Morgellons Research Foundation,” an organization devoted to “researching an emerging infectious disease,” with a medical board that boasts five MDs and an RN. Interestingly, none are dermatologists. An internet search for “bugs in the skin” will bring one to the Foundation’s Web site, and as Murase et al point out, the information therein may be very misleading to someone who suffers from delusions of parasitosis. One reads of cellulose fibers, fibers with “autofluorescence,” fuzz balls, specks, granules, strongyloides stercoralis, cryptococcus neoformans, “alternative cellular energy pigments,” and various types of bacteria for which potent antibiotics are prescribed, in the ever broadening spectrum of possible “pathogens.” In no case does one read of positive confirmatory tests, though many tests are undertaken. As Murase et al note, one also reads of numerous associated medical and psychiatric disorders that are attributed to, rather than co-existent with, or causative of the distressing symptoms. Frustration is extreme and suicidality is not unknown.

Clearly, as more and more of our patients discover this site, there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects. It behooves us, therefore, as dermatologists, not only to be aware of this phenomenon, but also each to develop an effective way to work with these patients, and so enable the patients to be able to accept one of the medications that we know to be effective. This is a challenge indeed—so often the patient, feeling “brushed off” or not understood, simply does not follow through either with medication or with psychiatric referral.

If one is to succeed in helping these patients, it is important that one acknowledge to the patient that what the patient describes is exactly what that patient is experiencing. One can then empathize, as did Murase et al, with the patient’s pain and discomfort, their anger and frustration with dismissive doctors, and the devastating changes wrought by the condition in the patient’s life, and so develop a therapeutic relationship. With regard to causation, Morgellons disease may be an acceptable appellation, but it may also be that the touted “mysteries” of this disease only prove stimulus for further research by the patient. So, perhaps without going too far into the difference between a disease with a definite cause and a syndrome that may have different ones, it may be reasonable for us to refer to the symptom complex in question as “Morgellans syndrome” rather than disease 

Of note: all these doctors are saying they are considering using the term “Morgellons” to refer to conditions involving DOP when talking to people who suffer from  DOP and who also think they have Morgellons.  They are doing this since it eases communication with the patient.

Whither Morgellons?

“Morgellons” is the name Mary Leitao chose for what she considered to be a mysterious new illness afflicting her son. Doctors told her it was just eczema, and that the fibers she found on his lip were just lint. But she was determined it must be a novel new disease that she personally had discovered, so she set up a foundation to publicise it. Eventually, via the internet, other people join her organization, the list of symptoms constituting “Morgellons” is expanded to include these new people. Eventually the list of symptoms becomes very broad, and encompasses just about any medical condition. Doctors reject “Morgellons”, since the symptoms are explained by other diseases, and are too varied and vague to constitute a working definition of a new disease.

But the “Foundation” continues on its mission of “raising awareness” of “this disease”. With lots of hard work they get some press coverage, then some local TV coverage, and then eventually some major TV coverage. Each time the story is the same. Some patients are presented who are obviously ill. Their doctors have told them Morgellons is not a real disease, and the fibers are just lint or hair. Wymore says it is a real disease. The CDC is investigating. The end.

As you can see here, Morgellons was a short-lived phenomenon. The local media coverage spurred interest which faded away. The CNN story spurred some interested, but was limited by the audience. Finally two huge spikes surround the networks morning shows and the “Primetime” special, then nothing, it tails off to zero after the next two months.

So what’s going on? Was Morgellons just a product of a media desperate for news during the silly season? The MRF supplied them with an interesting sounding story, and they ran with it? Then what happened? Where did Morgellons go?

People are still sick, that’s for sure. People are still going to the doctors with excoriations, and with itching, and with fatigue, and with baggies of fibers. That’s not going to stop. There are a variety of reasons for that, and those reasons are not going away.

But “Morgellons” has gone away. It was a label someone decided to put on a bunch of symptoms without any evidence to indicate that anything unusual was happening, and contrary to the opinions of the entire medical community. A few people publicised it very well for a period of time. The media ran the story, but now they’ve “done that”, and there will be no more stories.

Save the inevitable CDC report on “insufficient evidence”, the inexplicable advocacy of Professor Wymore, and the interminable and sad believer’s theories on Morgellons discussion boards, Morgellons is over.

Morgellons is over, but people are still sick. They are probably more sick now than when the MRF started their media campaign. By popularizing “Morgellons” as an actual disease, it gave validity to those who disagree with their doctors, self diagnosed, and chose inappropriate treatments. Morgellons is over, but the damage is done.