Most people who strongly believe they have Morgellons will complain that their doctors dismiss them as “DOP”, a common abbreviation for “Delusions Of Parasites”.

The Morgellons activists seek to portray their plight as a struggle of genuinely sick people against an uncaring medical profession that dismisses their symptoms as “all in your head”. Any suggestion of anything like DOP is reviled, and the believers wander from doctor to doctor, seeking those who will look beyond this.

To understand the Morgellons community, you need to understand DOP. One of the worlds leading experts on DOP is Nancy Hinkle, PhD. Hinkle is not a physician, she is an entomologist, so if anyone can find the bugs, it’s going to be her. Back in 2001, before the MRF got off the ground, she had an interview on this subject with the Discovery Channel in Canada.

http://exn.ca/video/?Video=2001030551.asx

If you are interested in Morgellons, I highly recommend you watch this video (it’s only about six minutes long), as it provides a simple overview of DOP, as well as the varied causes, which are mostly physical in nature. She also makes the distinction between those who are simply mistaken, and those who are delusional.

Out of the hundreds of samples that people have sent Dr. Hinkle over the years, NONE had insects in them. Her most telling quote: “If they are desperate enough they will usually find something”.

Dr. Hinkle also wrote a highly lucid paper on the subject in 2000:

http://www.ent.uga.edu/pubs/delusory.pdf

Scratching may produce papular eruptions. Any
repeated skin irritation produces a friction blister.
Repeated rubbing of an area often produces a bleb
(small blister) which, when ruptured, yields an open
sore that may become infected. Once the sore
begins oozing plasma and a scab forms, hairs and
cloth fibers become entrapped in the sticky fluid.
These flecks are dislodged and called mites or
insects because they look like they have “antennae”
and “legs” (Fig. 2). Hair follicles often are pulled
out; the follicle accompanied by the associated
sebaceous gland looks like a worm.

 

The Morgellons Research Foundation is an advocacy group. It has orchestrated the current media coverage by spoon-feeding a story to television news, both local and national. For those in the media who would like to do a similar story, I present the following 12-step method:

Step 1 – Find some Morgellons Patients. This is not difficult. Simply ask around on the Morgellons Research Foundation’s recommended Lymebusters forum. There are many people there who love to talk about their symptoms. Beware, as there are a few oddballs around, who might not quite be on message. Beware of patients with web sites that make them look obsessive, such as Anne Dill on Good Morning America, or Richard Vigil on 10News

Step 2 – V.O. – describe the symptoms of Morgellons in a scary manner, you want to hook your audience here. Note that thousands of people across the country have Morgellons, and there are hotspots of the disease in California, Texas and Florida.

Step 3 – Have the patient describe what is wrong with them, and have them show their lesions.

Step 4 – V.O. – Say these patients are being ignored by doctors, who claim it is all in their heads. It is important to set up sympathetic contrast in anticipation of step 9.

Step 5 – Zooming photos. Show photos of fibers and multi-colored fuzzballs, zoom and scroll while doing this, as it looks a lot more dramatic. Speak with a tone of amazement while describing the photos.

Step 6 – Professor Wymore soundbites – like “there’s definitely something going on“. Show Wymore in his Lab and wearing a white coat. Make it look like he’s an expert in this field. Do not mention he’s not a doctor. Do not mention he’s actually an assistant professor.

Step 7 – (Optional), show Wymore holding the letter he has written for sufferers to take to their doctors.

Step 8 – More zooming photos, this time describe how people find fibers inside their lesions. Try to make it sound impossible.

Step 9 – Find a doctor, interview him for hours, and show the line where he mentions “Delusions of Parasites“. Ignore complex terms like Neurotic Excoriations, Dermiatitis artefacta or “Case Definition“, as these cloud the issue.

Step 10 – Back to Wymore (or Ginger Savely), and have them say something to make the doctor seem silly. If it’s Savely, don’t mention she makes her living treating people who are convinced they have Morgellons.

Step 11 – A ray of hope: say that, at long last, the CDC is investigating Morgellons. Do not mention they are just investigating if there is any evidence that it exists in the first place.

Step 12 – Tie it up, cut back to your initial patient to remind the viewer of the human side of the story. V.O. about the hope they have. Make it real.

 

One of the problems with discussing Morgellons is that the argument tends to be polarized by the issue of mental illness. Inevitably, the people who believe they have Morgellons (“Morgellons sufferers”) will accuse their doctors and other skeptics of explaining away their symptoms with “delusions or parasitosis”, or some other mental disorder, and ignoring their physical symptoms.

In reality things are no so black and white. Let me try to clarify my position here, since I feel it’s been misinterpreted.

It is very clear that people with Morgellons do not all have the same problem. In fact the cases discussed on boards such as Lymebusters are very varied.

Some Morgellons sufferers might have a single physical condition. Some might have more that one.

Some Morgellons sufferers might have a single mental condition. Some might have more that one.

Some Morgellons sufferers might have physical conditions, but not mental conditions.

Some Morgellons sufferers might have mental conditions, but not physical conditions.

Some Morgellons sufferers might have both physical and mental conditions.

Let me be very clear here, my UNCHANGED position on this topic is:

I do not think that all Morgellons sufferers are mentally ill.

And just to emphasise this a little more, I’ve changed the word “and” in line 3 of my header to “and/or”.

Lesions are real, and there a number of things that can cause them, including many known diseases, mostly physical, some mental.

Fibers are real, and there a number of things that can cause them. But as yet, no known disease causes fibers to emerge from lesions. No credible evidence suggests that fibers are emerging from the skin.

 

Here’s a fascinating article from India:

A study of skin disorders in patients with primary psychiatric conditions.

Which neatly goes over a “mixed variety of physical and mental illnesses”.

Only 2% were diagnosed with DOP, and less than 5% of the skin disorders were psychogenic.

Now, I don’t think this group is at all representative of the people who claim to have Morgellons, since it’s a sample of people who have a primary psychiatric condition. But the varied nature of the study group is probably representative of the mixed variety of Morgellons sufferers.

Here’s a nice quote:

“The skin occupies a powerful position as an organ of communication and plays an important role in socialization throughout life. The interface between dermatology and psychiatry is complex and of clinical importance”

 

The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.

(Note: This will be a work in progress – please email me suggestions and corrections at Morgellonswatch@gmail.com)

Q) What is Morgellons Disease?
A) Morgellons is an proposed disease, unrecognized by doctors, promoted and self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.

Q) Is Morgellons a real disease?
A) Not by conventional medical standards. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The “evidence” for Morgellons is entirely anecdotal.

Q) What is the History of Morgellons?
A) Morgellons was first proposed in 2002 by Mary Leitao, to explain her 3-year old son’s eczema. Leitao looked at her son’s skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son’s eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. The idea of Morgellons was spread over the internet.

Q) Are the most cases in California, Texas and Florida?
A) Yes, because that’s where the most people are, those states have the highest populations. Morgellons is a self-diagnosed disease. People “register” over the internet by filling out a simple form on Morgellons.org.

Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.

Q) Have researchers determined the fibers are not environmental?
A) No. Randy Wymore is the director of Research at Leitao’s MRF. He works on a volunteer basis using the facilities of OSU. He has been examining fibers sent (often anonymously) to him. Many fibers he would discard as environmental, but there were a few he could not identify. Not being able to identify a fiber is not the same as proving it is not environmental. Fibers go unidentified all the time in forensic cases. To prove it was not environmental, you would need to prove it was generated inside the body. This has not been done.

Q) Do most doctors dismiss Morgellons Sufferers as having Delusions of Parasitosis?
A) No. There are a wide range of things going on here. Doctors understand that people might mistakenly think fibers found on their skin are connected to their disease, without the patient being delusional. If a patient has lesions or itching, then there are a vast range of possible causes for this, and doctors would attempt to diagnose and treat them. Delusions would be diagnosed if the patient claims to see things that are not there. There are some people who are clearly delusional and who are highly resistant to any hint of a psychiatric diagnosis. These people are likely to latch onto anything they feel explains their symptoms.

Q) Do people “sweat black tar“?
A) No. Again this is based on one statement, and was then picked up by the media. This time Savely was quoted as saying: “These people will have like beads of sweat but it’s black and tarry“. She was probably referring to what other people call “black specks” (dried blood, necrotic tissue, or blackheads). The imagery was just to vivid for the press to pass up.

Q) Does Morgellons cause muscle twitching?
A) No. It’s not a real disease, but the list of supposed symptoms was extended to include “uncontrollable muscle twitching” after a report (May 2006) that former Oakland A’s pitcher Billy Koch has Morgellons. The extensive Morgellons Research Foundation’s “Case Definition“, written (Feb 14 2006) a few months before the Koch report, does not mention muscle twitching even as a secondary symptom.

Q) Is it odd that some fiber analysis shows some fibers to be made of cellulose, a molecule generally found in plants?
A) No, far from it. Cellulose is what the majority of environmental fibers are made from. Paper, tissues, cotton, q-tips, linen, ramie, rayon, tencel and lyocell are all made from nearly pure cellulose.

Q) Is it true that “Dermatologists claimed the filaments were all delusions, although none had studied them“?
A) No. Dermatologists often look at samples that patients bring in, in order to eliminate the possibility of parasitic infestation such as follicle mites, scabies or lice. Filaments themselves are not delusions, they are physical objects.

Q) Where do the Morgellons sufferers on TV come from, if this is not real?
A) From the internet. The TV report have been orchestrated by Ken Cowles, the MRF director of media relations. He seeks out people in the local area who have registered with the MRF, and sets up interviews, and supplies photographs and video. The people featured are often active in promoting Morgellons on internet message boards. For example, the Alabama WKRG report featured the family of Leigh Ann Cofield, very active on the Lymebusters forum

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha