In the next few days, I’ll be writing about diseases and conditions that share a common problematic thread—they are largely psychological, and they often make both doctors and patients feel helpless.
I’ve been meaning to touch on “Morgellons disease” (a form of delusional parasitosis) for a while, but haven’t figured out how to approach it. Thankfully, others have. In the first referenced discussion, a paper was cited. This paper was such a great example of how not to approach medical science that I just had to address it in detail, section by section…
Background
The authors argue for a newly described illness which they call “Morgellons”. It resembles in all ways except name delusional parasitosis, a condition where a person is falsely convinced that they have parasites in their skin. In general, if you wish to describe a possible new illness, you should start by coming up with a useful operational definition. This doesn’t happen. Instead we get anecdotes.
It begins with a single practitioner’s experiences. It’s hard to overstate how problematic this is. Early in the HIV epidemic, solo practitioners in a few cities found unusual diseases, communicated with each other, and discovered the AIDS epidemic—the difference was that the discovered real diseases with shared characteristics.
This physician saw some patients who shared similar characteristics, and, rather than picking the most likely diagnosis, went straight for the zebra. A more apt metaphor might be a unicorn—she made her diagnosis based on a “research foundation” devoted to an illness made up out of whole cloth.
History
The next mistake is in linking the new “disease” with an account from a 17th century observer. The observations are old, non-specific, and based on no current medical science. He described an odd constellation of symptoms, and the Morgellons Movement adopted it. There is no way to validate 400 year old observations.
After co-opting a 400 year-old name, one of the authors started a foundation which “began accepting registrations from people with symptoms of this unrecognized disease.” They lay out no clear case definition, and change the characteristics of the disease to fit the patient. “…[I]t soon became evident that other symptoms within this patient group, such as disabling fatigue, life-altering cognitive decline, joint pain, and mood disorders…” sometimes accompanied the skin symptoms. Shifting the goalposts in order to make your case definition more inclusive is not great science.
Symptoms
This section of the paper is devoted to a long list of symptoms which once again fails to give a case definition. In this paper, which purports to report an important emerging disease, it is disturbing that half-way through the paper, no disease has yet been defined. Perhaps one of the worst sins of this section is the confusion of correlation and causation based on a false premise. The authors assume (or beg the question) that Morgellons exists. Based on that assumption they assert that:
[t]he high incidence of psychopathology, which appears to be directly attributable to this disease, confounds the clinical picture for these patients as the seek validation for an insidious dermatologic condition that defies logic, while sometimes exhibiting obvious symptoms of mental illness.
Might they have put the cart before the, er, unicorn? If someone acts mentally ill, and has a bizarre set of illogical symptoms, why not put the blame where it belongs? To take a disease of the mind, and simply assert that it is a disease of the body, will help no one.
The next assertion is truly horrible. “It appears that the putative underlying infectious disease, which has been unrecognized and untreated, can cause psychopathology in many patients.”
Holy crap! Now it’s an infectious disease?!? Based on what? And it’s an infectious disease that affects the skin and central nervous system? Maybe it’s a variant of syphilis! How can these few clinicians (OK, only one is a clinician) have stumbled onto something so important and end up ignored?
Epidemiology and Transmission
OK…time for more unfounded assertions. “The total number of registrations on the Morgellons Research Foundation website is presently 2200, which is believed to be a fraction of the actual number of cases.” Believed by whom?
Then of course they run into the same problem they’ve had from the beginning: “There is some evidence to suggest that skin lesions and fibers may not be readily apparent in all individuals with this disease… .” Then what defines the disease? How does one track the epidemiology of a disease with a name and no definition?
Pathophysiology
And here is the real coup de grace.
Skin biopsies of patients with Morgellons disease typically reveal nonspecific pathology or an inflammatory process with no observable pathogens…In general, pathologists look for signs of known diseases and, thus, may miss clues of Morgellons disease in biopsies.
OK. I can’t go on. It’s not just that a mainstream journal would publish such crap. It’s that it makes my head hurt. But I will form a logical hypothesis that my headache has something to do with reading, sitting at the computer, and being frustrated. It seems unreasonable to posit that it is due to some unknown infectious agent that can be neither measured nor defined.
In the discussion section of the paper, the authors invoke Vienese physician Ignaz Semmelweis, a physician criticized as a crank in his own time, but later lauded as a hero. Robert Park said, “to wear the mantle of Galileo it is not enough that you be persecuted by an unkind establishment, you must also be right.” This paper is not right—it’s not even wrong.
Savely, V., Leitao, M. (2006). The Mystery of Morgellons Disease: Infection or Delusion?. American Journal of Clinical Dermatology, 7(1), 1-5.
If this is the worst paper you have ever read, you have led an extremely sheltered life.
There was a fascinating discussion on the Washington Post website pitting a dermatologist against a Morgellons-supporting doctor of some sort, in reference to a Post weekend magazine article on the topic.
The story is linked to near the top of the discussion:
http://www.washingtonpost.com/wp-dyn/content/discussion/2008/01/17/DI2008011701435.html
Worst presentation to a scientific group ever:
http://tinyurl.com/34uleb
zomg! are they serious?
I’ve been following the Morgies for about a year and a half now. The condition itself is clearly Delusions of Parasitosis redux.
I have become fascinated by the quacks that have congregated around the disease in an exploitative fashion. Hildy Staninger is particularly interesting. Her credentials are all sketchy at best (diploma mill PhD etc.) but has built up a cult-like following. At the end of the day, she’s in the business of selling saunas.
If you have about 30 minutes, and need a good laugh, listen to her talk about cell phone radiation: http://preview.tinyurl.com/2wgvoa
Rowley
I have just started looking at Morgellons the last week or so. It is simply not possible that parasites could not be identified as such in samples using obvious techniques. You pot the sample, microtome it, and if it is a parasite it will have internal structures which will be obvious. Either everyone who has tried to identify them has been incompetent, and/or every competent investigator has found them to be non-parasites and that finding has been rejected by the patients.
I think that low NO does explain all the symptoms.
I think it is more a hallucination than a delusion. I think it is like phantom limb pain. Phantom limb pain is obviously not “real” because there is no limb present to feel pain. But the nerves carrying signals of pain to the brain are being activated. I think it is the same here, the nerves carrying signals of itching and movement in the skin to the brain are being activated (because low NO has made them hypersensitive).
SSRIs are used to treat the itching of primary billiary cirrhosis. They would likely be useful here because it is serotonin that causes activation of mast cells which then release histamine and cause the feelings of itch.
I agree that its more of brain problem than a skin problem. When I think hallucination, I think of perceiving stimuli that are not there. When I think delusion, I think of misinterpretation of real phenomena. With morgies, I think its the latter. They probably do itch, and they probably do find scraps of fiber. But they develop an unshakable false belief about their origin.
Debating them = a game of whack a mole.
daedalus2u: how does one increase the NO production in the body? I’m sorry to sound cynical, it just feels like the oxygen/antioxidant stuff to me.
How would gas molecules in the body cause such hallucinations? Is it that the nerves themselves are hypersensitive, or is it the receptors in the brain that are firing when there’s no input?
NO is a signaling molecule which the body uses in hundreds (or thousands) of different pathways, simultaneously. It is one of the things which regulates vascular tone by activating guanylyl cyclase which then makes cGMP which relaxes smooth muscle causing dilation. The profound vasodilation of septic shock is due to high NO levels. It likely causes some of the mental symptoms also, but it is so hard to change NO levels that it is hard to demonstrate.
NO is a neurotransmitter but exactly what it does is not well understood. It is known that it does many different things simultaneously. It is obvious that they are all coupled (because each NO “sensor” can only sense the sum of NO from all sources). Studying systems of even a few coupled non-linear parameters is difficult. A few hundred is extremely difficult. The myriad NO pathways are extremely well regulated (which is good for us as organisms that use those pathways), but the extreme levels of regulation make experiments on those pathways quite difficult. When you try and perturb them, not much happens until you have perturbed it too far and then it “breaks” and the organism dies. ATP regulation is like that too (but more so). Organisms can pretty much compensate to minor perturbations until they can’t compensate any more and then they die. For the most part those compensation pathways are mostly unknown and they operate at multiple different time scales simultaneously.
NO does cause long term potentiation that is it causes a nerve to increase its sensitivity to firing. It also causes long term depression, a decrease in sensitivity. Which nerves do what under what circumstances and to what effect is mostly unknown. There are many nerves in the brain which stimulate activity, and some which repress activity. What actually happens is a complex integration of all of those things. A change in that balance will affect how the brain operates. What is especially important in something like the brain, where the whole thing has to work together and “in sync”, is something to regulate how it functions globally. I think that is a primary function that NO has, keeping everything “in sync”.
NO inhibits Nuclear Factor kappa Beta which has been called the “master switch” of inflammation. NFkB causes the expression of many immune factors. The basal NO level before NFkB is activated is one of the things that sets the “gain” of the immune system. With less NO, the “gain” is higher. That may be related to things like allergies (too high a gain), or chronic infections (too low a gain, but I think this is unlikely, more likely is too much of the wrong kind of “gain”). I think the problem with Morgellons is that the “gain” is set too high because of low NO. With the gain too high, the skin become extremely sensitive to even very small signals, or even to no signal at all.
Things like antihistamines block the effect of histamine once it is released. A better treatment would prevent the release of histamine in the first place. I think that is what increasing NO levels would do, decrease the “gain” so less histamine would be released and the immune system would respond a little slower (but under more control) rather than responding all-out for minor signals (or even no signal). I think some autoimmune disorders get started this way, with low NO increasing the “gain” in the immune system and causing autoimmune sensitization.
Thanks for this–Morgellons results in lots of phone calls to entomologists and submitted samples.
And they don’t like it when we say they have lint, not bugs.
No, they don’t like it one bit; nor do they believe it. Somehow, every doctor, pathologist, entomologist, etc. are wrong, and a single google scholar is correct.
I have finally posted my blog on Morgellons.
http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html
I see it quite specifically as low NO in the skin, which causes the same skin hallucinations as does several days of cocaine abuse, and low NO in the brain which causes the same types of hallucinations as does alcohol withdrawal and stimulant abuse.
Low NO explains essentially all of the symptoms.