I’ve decided to describe a largely unacknowledged process of disease pathogenesis that I will call folie a news. To explain though, I’ll have to first discuss a disease called delusional parasitosis.
Delusional parasitosis (DP – sometimes called Ekbom’s disease) is a lot like what it sounds like. Normal or abnormal sensations of itching are interpreted by the patient as being bug bites, or bugs traveling under the skin despite the absence of histological evidence of a parasitic infection. This is what is known as a “fixed delusion” and it becomes an obsession for the patient. The disease has a few known organic causes such as amphetamine or cocaine-use and many common co-morbities including diabetes, schizophrenia, fibromyalgia, chronic fatigue syndrome, lyme disease and depression.(1) Patients usually present to a dermatologists office complaining of sensations of itching and biting from insects, and frequently carry in samples of skin or lesions they’ve scratched off – this is referred to as “matchbook sign” in that the patients would often present with their skin scrapings in a small box like a matchbook. These days it’s probably more likely to be “zip lock sign”.
12% of DP patients present with what is known as folie a deux(literally madness of two) in which the patient is not the primary sufferer of the delusion, but has adopted the delusion of another patient – usually a spouse or other family member.(2) It’s also important to remember that these people may be perfectly rational in every other way, but have just this single fixated delusion. Also, the feelings they’re having are real – one must not tell them it’s just “in their head” – it’s just what they’re ascribing them to is off . Further treatment with atypical anti-psychotics – which is effective a majority of the time – should be broached carefully as people feel stigmatized by diagnoses of mental illness.
Now keep these things in mind while watching the following video that grrlscientist blogged this weekend about people who think bugs are crawling out of their skin.
(video and more below the fold)
All the symptoms of DP are there, but what I find unfortunate about this presentation is how credulous the reporters are and how sensationalized the report was. Why not consult a dermatologist or two? And the comparisons to ignroring the AIDS epidemic? The guy who says it is a doctor, he should know better that public health officials were desperate to get the word out on HIV and it was primarily politicians who didn’t want to be seen as caring about a disease of gays (his reference to “and The Band Played On” is a work about the attempts by researchers to get attention and funding to an emerging disease). Or how about even an entomologist? That creepy moving bug and those chunks of bug parts? Likely a springtail – or collembola – which is pretty much the most ubiquitous arthropod on the planet making the diagnosis more likely that she had unwashed hands or had recently been gardening rather than being bitten by a bug with no mandibles to bite!
This reminds me of a similar “outbreak” of a similar skin disorder which was dubbed by the sufferers “Morgellon’s disease” after a somewhat ancient description of, well, DP. The patients have even founded the Morgellon’s research foundation to fund investigation into what they believe is an emerging disease (also see Morgellonswatch – a group that debunks Morgellon’s claims). Outbreaks are linked, more than anything, to news coverage of people who believe they are being parasitized by insects. Prominent positive signs also tend to include an internet connection. Collembola was also identified (although the images are pretty sketchy) in the skin scrapings of several Morgellon’s patients. If real it’s a sure sign of dirty fingernails rather than a sudden shift in behavior of a ubiquitous bug from eating decaying leaves to eating human flesh. It’s been recently a topic of discussion in the Journal of the American Academy of Dermatology to use Morgellon’s disease as a “A rapport-enhancing term” for DP, but no real scientists believe that it is separate disorder from DP (although the advocates have acquired a crank MD).
Here’s where my title for this article comes in. It does people no good when media reports credulously report this kind of conspiratorial nonsense about science or disease without consulting real experts (not fake ones) that can give people insight into what is actually going on. Pretty much any dermatologist or psychiatrist could proffer a good explanation for what’s happening here, and rather than having people go on driving themselves nuts looking for bugs, treating themselves with pesticides, and generally making things worse, they could see the appropriate healthcare professionals that could make a real improvement in the quality of their lives. Instead, what do we have? News reports that sensationalize a disease in such a way that it’s now likely that more people will adopt the delusion, and worse yet, not seek or be resistant to appropriate treatment. All this kind of reporting creates is fear and misery, and should be opposed vehemently by people who are actually concerned that patients suffering from such symptoms get appropriate care. Instead what we have is junk reporting, fearmongering, and, surprise surprise, more people reporting these symptoms, not from some mystery being uncovered, but rather from folie a news. Hell, the report made me itchy for hours.
I think we should consider folie a news (or to be consistent folie a televise or folie a nouvelle but I like how “news” kind of rhymes with “deux”) a new source of disease pathology. News stories that are so bad, so hysterical, and so irresponsible, that they actually contribute to illness in a population by increasing delusional symptoms in the populace and misdirecting efforts of patients away from beneficial treatment. There are dozens of examples of news reports causing similar mass hysteria (from the New Delhi monkey man to penis panic(koro) to photosensitive epilepsy to this recent idiocy about electrosmog) , maybe it’s time we considered evaluating bad news reports as what they are – a public health menace.
(1) Delusional parasitosis or Ekbom syndrome: a case series. Nicolato R – Gen Hosp Psychiatry – 01-JAN-2006; 28(1): 85-7
(2) Koo J., Lee C.S.: Delusions of parasitosis: a dermatologist’s guide to diagnosis and treatment. Am J Clin Dermatol 2. 285-290.2001;
(3) Morgellons disease: a rapport-enhancing term for delusions of parasitosis. Murase JE – J Am Acad Dermatol – 01-NOV-2006; 55(5): 913-4
Comments
49 responses to “Folie a news”
It’s terrible how the media spread nonsense that actually harms the people affected by the supposed problem they are covering. Here in Mexico, a famous TV personality (and usually considered intellectually honest), Ricardo Rocha, has been spreading HIV-AIDS denialist bull**it and “alternative therapies” for what they say, is confused with AIDS.
I suppose this kind of affections, in a not so distant past would be labeled as “demonic influence” and the sufferers subjected to exorcisms, other unpleasant/painful practices and even burning in the stake. I bet people among the radical Christian right might still believe that for this sort of thing.
MarkH,
May I suggest a very simple solution? Since there are so many people across the country claiming to have these identical symptoms, it would be very easy to study this illness.
Conclusively prove them wrong.I challenge YOU.
Somewhere along the way, many doctors have forgotten to think ‘outside the box’. With our progress in nanotechnology Scientists have been able to modify insects, bacterias, viruses, seeds, etc. Have YOU not taken just one moment to consider the future ramifications from these modifications? I personally am not highly educated. I hold no impressive degree. I have the forethought to see future problems from these modifications, that have been done to nature.
MarkH, my Mother is 71 years old. She has worked very hard all of her life. She has NEVER had a history of any of the following..promiscuity, lying, alcohol abuse, drug abuse, mental illness, or hypochondria. My Mother is..a devoted parent, grandmother, wife, and friend. Her social life is her family and church..So can YOU possibly explain to ME why she has an ongoing problem with microscopic insects on her person?
If you have the desire to genuinely help another human being, who is suffering, I would be more than willing to come to Virginia and have you try to solve our medical mystery! Just for your information, if you decide to take my challenge, know I’ve had her examined at Penn State and by a psychologist who specializes in dermatology, neither have called her delusional, both facilities found her to be quite ‘sane’. IN FACT, they both confirmed this is a medical illness NOT a mental illness.
In my opinion sir, it seems to me that you have ‘jumped the gun’ and came up with a simple diagnosis to describe every patient. What actual research have you done?
The saddest part of all is you are highly educated and have access to resources which could help. Please take just one second and think…what if YOU are wrong?
Quoting MarkH’s own words above:
Perhaps the psychologist is following MarkH’s advice? Sue, even you are reacting negatively when told its a mental thing…
Besides, this world is imperfect and so are we, good behavior guarantees nothing. We all get sick, our minds fail, and we die.
“…maybe it’s time we considered evaluating bad news reports as what they are – a public health menace”
Thanks for that. Been saying that since I was ten.
Sue, you have demonstrated perfectly the problem with the stigmatization of mental illness associated with diagnoses like this. I mentioned a list of co-morbidities and organic causes, and you mistakenly thought I’m essentially accusing your mom of being a drug addict, a schizophrenic etc., however this is the problem with frank discussions of illnesses like these.
The fact that these are co-morbidities does not mean that they are required or always present, they are just things that frequently occur in conjunction with the diagnosis of DP. It’s also most common in women over 50, but that doesn’t mean that describes every patient. I’m sorry if you felt that was the implication of my words, but you are mistaken.
Further, DP doesn’t mean you’re crazy or that your symptoms aren’t real or are only in your head. It is thought that the symptoms are a result of actual feelings, neurons firing inappropriately etc., meaning that yes, your mother is physically feeling these symptoms, no they are not imaginary.
The bugs, however, are likely imaginary. The causative insect/arthropod agents that are routinely implicated in this disorder are almost always harmless, ubiquitous, and physically incapable of parasitizing humans. Dermatologists who examine the scrapings (as they should as part of a thorough physical exam) find nothing that would indicate a human parasite. The example from this video of “bug parts” are almost certainly artifacts.
There are instances in which a parasitic agent can cause a similar pruritis in humans, and a diagnosis of DP should be able to exclude these agents. They include things like fungal infections, lichen simplex chronicus, prurigo nodularis, flea bites, scabies, bed bugs, tick bites etc. But they have characteristic findings and can usually be treated through removal of the causative agent (usually an animal reservoir or infestation). The symptoms of DP, usually do not fit skin reactions to known parasites, for instance the woman in the video complaining about parasites in her eyes and in her joints – this is not actually happening. Bugs simply don’t parasitize humans this way, and every time such patients are studied they don’t find a causative agent for these feelings.
This doesn’t mean they aren’t real. It’s just what the feelings are being ascribed to isn’t real. The problem is making the error that how something feels has to be true. It may feel as if there are bites, but that doesn’t mean that is what is occurring, and it certainly doesn’t mean you’re crazy if you’ve had such feelings. The human body simply isn’t a perfect machine, it gets sick, its senses are imperfect, it will trick you, and the presence of symptoms will often have such a suggestive effect on the mind that they start seeing a cause that is not present. This is simply part of being human.
There are treatments though, and a dermatologist should be able to provide help.
From The Onion:
Meth Addicts Demand Government Address Nation’s Growing Spider Menace
I am aware of William Harvey and that letter (which was written in response to one of my cited articles). Anyone who thought that Harvey’s letter was a convincing piece of scholarship is, well, confused. It’s a classic crank letter.
Further you didn’t read really anything I wrote and your accusations that I’m violating your civil rights just make you sound like a hysterical crank. Now back off on the link dumps and cut and paste spamming or you’ll be blocked.
Niels, I asked you not to cut-and-paste spam the comments. You continued to do it. I only removed the new post. I’ll continue to remove cut and paste spam.
It has nothing to do with things that disagree with me. You’re post calling me a jerk or whatever are fine. But when sites are trolled by cut-and-paste spam and endless link dumps, it kills discussion and drives people away. I disemvowell for abuse, not speech.
I’m not going to argue with a troll, and I’m not going to tolerate bad etiquette.
Dr. James Matthews, MD Endorses NutraSilver as an �Effective Therapy� for Some Morgellons Symptoms
Written by James Matthews, M.D.
Wednesday, 18 April 2007
Disclaimer: This information is being shared for educational purposes only, and is not intended to replace a proper consult with your physician for healthcare. No one should practice medicine on themselves or others without a license.
Dear Morgellons Community Members,
I have some preliminary data indicating that NutraSilver is an effective therapy for some of the symptoms, in some of the patients, suffering with Morgellons Syndrome, and after new drug applications have been filed, endorse trials of its use for this mysterious condition.
About 2.5 years ago, I met my first Morgellons patient and three months later, I became a patient myself.
I sorted through all available data, what little there was, and came upon the link with Lyme disease made by William T. Harvey, M.D., M.P.H..
I used almost every available method of Advanced Western Medicine over a period of two years, including variations on: the Burrascano protocol; Shoemaker Biotoxin-binding protocol; Marshall protocol; Sherry Roger’s detoxification protocols; a host of anti-parasitic medications; UV; Infrared; Saunas; Salt and C; Diatomaceous Earth; many immune boosters; regular Bikram, Dahn and Iyengar Yoga, and after all this, felt �ok�, and had been off of all prescription medications for about six months.
Then, about four weeks ago, I heard about NutraSilver and chose to try some personally.
Now, most people recognize that precipitation of a Herxheimer Reaction is a good indicator that your therapy is effective. In my case, I had precipitated these gently, and detoxified many, many times, and believed there was very little infection left in my body to cause a Herx. This turned out not to be the case. A unique, deep tissue Herx occurred which gave way to greater feelings of well being and physical health than I had previously experienced with any other method.
I recognized the potential value of this new therapy and immediately gave my two sickest patients my remaining samples.
In one of the patients, who had no lesions and had already been treated for about 1 year with my integrated protocol (above), we observed only slight improvement in his symptoms of creepy crawly and prickly sensations.
In the second patient, who had only just begun my protocol, and had been suffering with multiple bodily and facial lesions, the results were dramatic. Within days his skin started clearing. He declared he felt “very good”, with improved mental processes and mood, and increased energy.
NutraSilver is a special suspension of Ionized, Colloidal Silver in distilled water. The suspension is created through a unique proprietary process where water is negatively charged and clustered so that the silver is well suspended, and theoretically better absorbed. Colloidal Silver has a long history of use as an antimicrobial agent, and there are studies showing that NutraSilver kills multiple pathogens in culture very effectively as well. I’m not aware of any toxicities with any, silver products, and the only significant side effect ever documented is argyria. This is an irreversible condition of grayish coloring of the skin that seems to occur when too much of the wrong kind silver is ingested. Best estimates indicate that a healthy 70 Kg person would need to ingest about 10 grams of Silver to be at risk for this condition. By contrast, 1 drop of NutraSilver contains only 0.090mg of Silver. In other words, a person would need to ingest over 100,000 drops of NutraSilver to even theoretically approach the risk for argyria. This may be why there has never been a single case of argyria documented with NutraSilver. Further, I’ve seen a study showing that properly prepared Colloidal Silver taken for two months is purged from the body at the same rate at which it is consumed. And, half of the remaining silver was purged within one month of stopping consumption. Taken together, this data suggests to me that the risk of argyria from NutraSilver is probably somewhere between extremely low and insignificant.
Before considering use of NutraSilver with your personal physician though, everyone needs to know that in 1999, the FDA had declared in a “Final Rule” that, “all over-the-counter (OTC) drug products containing colloidal silver or silver salts are not recognized as safe and effective and are misbranded.” Ultimately, the FDA is the authority in this area, and this letter is in no way meant to undermine their authority.
On the other hand, we’re dealing with a special situation here. To begin with, Morgellons wasn’t widely known in 1999 when the FDA ruling was made, and even today, the CDC hasn’t recognized Morgellons as a disease. Further, many people in the community are suffering so much that they may feel, after consultation with their personal physicians, that given how some have benefited, a trial of NutraSilver may be worth the tiny risk of argyria. Given how some are suffering, I can even imagine people feeling that trading Morgellons’ lesions for argyria quite fair, and agreeable.
The choice to try it or not, is a very personal one, where each individual must consider: their degree of suffering; other options; costs; risks; the FDA’s ruling; and most importantly, the recommendations of their personal physician. Further, I now know that at present, NutraSilver is classified as a nutritional supplement and can’t officially be used for any diseases, symptoms, or relief, only water purification. So, any individual who chooses to use it off-label, does so, AT THEIR OWN RISK.
After consulting with their own personal physician, if anyone does choose to use NutraSilver for Morgellons, please let us know how it goes. We hope to compile data about any possible risks, and benefits, and use this information in a “New drug” application to the FDA for clinical trials.
Standing together now, we will find answers, and we will begin to offer more relief for those suffering.
Conflicts of Interest: A small percentage from the sales of NutraSilver is paid to Advanced Medicine, L.L.C., a new nonprofit company that I direct. 100% of the monies received go directly back into the support of clinical and scientific research in Morgellons. Using this method of funding, I hope to raise more money for Morgellons research within the next year, than all of the other organizations, in all of the previous years put together.
I will be available to answer some questions on the Morgellons Hope Community Forum.
Sincerely,
James Matthews, M.D.
depp=true
notiz=[disemvowelled for cut-and-paste spam]
My question to all who say we are nothing more than “delusional” is ….. How do you explain how so many who suffer with whatever you want to call it, have the same symptoms? I can only speak for myself, but my family & friends have watched my torment & suffering long before I ever knew about body bugs/Morgellons Diease. It was my boyfriend who found others who were suffering as I was on the net & brought it to my attention. I have not seen a Doctor, why waste my time & money. But I can’t work, I can’t socialize. Why you ask? Because when my lesion located on my chin goes through its many stages, but always the same pattern, when full it begins to drain itself, but not the way a boil or blister would, it sprays out yellowish/brown fluid mixed with black & white specks & hair like fibers that move the fluid dries very quickly within secs. & if this is happening & I am having a conversation with someone who might be sitting across the table from me, they begin to feel like something just flew in their eyes or like their skin has just been poked with needles.(Our Boston Terrier begins to yulp if it hits him, is he delusional too?) Now mind you these people who I describe did not know what I thought I had or that I was sick in any way & you want to know why, because I didn’t know. I thought it was just a pimple, but a pimple that just wouldn’t go away. Thats when I realized, that what they felt had to be coming from me, because I saw it. I told no one, thats when I began to suffer in silience & became a hermit. I thought I was losing my mind until It had gotten so bad that others now in my presence could see the fluid coming out even if I wore a band-aid over it.The fatigue is so great, that I am asleep longer than I am awake.The joint & muscle ache is very debilitating that I feel like an 80 yr old woman I am only 46.The brain fog is so scarey that sometimes I can’t even remember my 12yr old sons name much less what I did earlier in the day & the worst part of all is when the lesion does secrete its fluid there is an aroma that I believe affects our brain because durning that time depression sets in & can be so strong that thoughts of suicide begin to creep in your mind. Everyone who knows me knows I’m not a suicidal so for me to experience these feelings is so very frightening. Thank God for the Believers because if it werent for them I dont know where I would be right now. I have since then learned about changing my diet taking more vitamins & so on. My lesion is smaller but is still there & still going through its cycles. In other words I have good days & bad but with my friends & family support I manage to get through. I don’t wish this diease on even my worst enemy, because it is HELL ON EARTH. Not many can survive the symptoms much less the depression. So why can’t you Doctors live up to your hippocratic oath & HELP US, PLEASE!!INSTEAD OF ARGUEING ON WHETHER OR NOT WERE DELUSIONAL! WHAT HAPPENED TO EVERYONES HUMAN COMPASSION????? IS IT REALLY EASIER TO DISMISS US AS IF WE ARE NOTHING MORE THAN SELF INFLICTING LEPERS. I WANT MY LIFE BACK AND I DONT CHOOSE TO LIVE THIS WAY BELIEVE IT OR NOT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!DG
What I find particularly worrying is the inability of many doctors to think out of the box and their denial that strange new illnesses can emerge. They seem to have failed to observe a pattern whereby illnesses such as M.E. and AIDS were initially also treated cynically.
Also many patients with lyme disease (now accepted as being hugely underdiagnosed) have also been said to have DOP because itching, tingling and skin sensations can be a symptom of lyme.
Both patients with Morgellons and Lyme have many, many different symptoms, however, they do not all have a fixed belief regarding what the cause of their illness is.
It is my understanding that DOP is characterised by one main factor – that the patient has a fixed belief that they have parasites; even when there is no evidence indicating that this is the case.
How is it that a person with skin lesions, rashes, visual problems, incontinence problems, joint pains, sleep problems, short term memory difficulties plus sensations such as tingling, biting, stabbing and itching is diagnosed as having DOP? Because these are the problems presented to doctors.
Furthermore, Dr Joseph Burrascano, a lyme specialist, advocates that diagnosis of lyme should pay attention not only to scientific testing but also the patient’s symptoms and medical history.
Many patients’ histories would show that they had attended their doctor complaining of such symptoms long before they had ever heard of lyme, morgellons or DOP.
A final question I would like to ask is whether any scientists or members of the medical profession consider it worth investigating the huge rise in people suffering from, either Morgellons, or Delusions of Parasitosis, in specific states in the USA? Whatever the diagnosis surely such a dramatic increase in a specific illness should be addressed?
Isn’t it possible that “non-Morgellons delusory parasitosis” is also a physiologically-based disruption of normal sensory response in the skin? It doesn’t seem far-fetched to consider that this might be a group of disorders with a wide range of causes and presentations. Our minds do tend to fill in the blanks when we’re confronted with unfamiliar experiences — many of us would compare a constant itching or crawling sensation to the feeling of being bitten by insects.
One analogy I can think of is depression. A severely depressed person may be absolutely convinced, in the face of overwhelming evidence to the contrary, that his family would be happier if he killed himself. That specific conviction would be delusional, but that doesn’t mean that the depression itself is imaginary.
MarkH: It seems you are being bombarded by two cranks or two trolls (in this case, is there a difference?). Anyway, the papers cited, regardless of the physical symptoms, make very clear that the skin is not infested by insects. There seems to be some kind of eruption, and it can be said that you allowed for that when you said (I am again citing the same fragment I cited before): the feelings they’re having are real – one must not tell them it’s just “in their head” – it’s just what they’re ascribing them to is off.
These trolls/cranks bring about stupid and unsubstantiated arguments, and when they are told so, they complain about not being treated fairly. What makes them deserve special treatment in a blog dedicated to truthfulness and intelectual honesty?
dgarret: If indeed you are sincere and not a crank/troll, I’m sorry about your situation, but the less that can be said is that you have some mental problems, made evident by your refusal to see a doctor even in view of all the suffering you are getting from your problem. How can you possibly know you won’t get the help you need without even trying?
What is the process of acquiring a crank MD?
Is there an application process?
How long until someone comes up with some woo ‘cure’ and starts selling it?
MarkH:Thank you for your response & I do have a scheduled Drs. appt. coming up July 3rd, thanks to my father. The reason for my delay was due to the lack of health insurance & finances. But I guess ultimitly the main reason for my delay is exactly the response you gave me.Lets see what did you call me a crank/troll yeah I can’t wait to see a Doctor so he too can verbally abuse me. Why would you make such a statement? I’ll tell you a little bit about myself. I am currently in a new relationship (He is 30 & I am 46)we have been going strong for a year & half. I have a very good looking, very itelligent 12yr old son, who loves me & I love him more than life itself. I own my own home with wonderful neighbors to boot. I have many friends & very loving family, So you tell me do I have a reason to be depressed???? A younger man finds me attractive not just because I dont look my age, which by the way I look 30ish but because he & I were & still are best friends. I have so much going for me. Why Why would you think that I must be suffering with depression & causing this on myself just because I hadn’t seen a doctor.Sounds like we’re damned if we do & damned if we don’t but even still, according to you that makes me a liar? I don’t want special treatment not from you not from anyone. I just want all who are suffering with whatever it is to be heard & to be helped Hell forget about me. I’m truely worried about the future & if this is contigaous. I worry for my son & boyfriend & everyone I come in contact with. You don’t even know me. I am telling the truth!!! Why am I even bothering to explain, its just a waste of time. So In answer to my own question WHAT HAPPENED TO HUMAN COMPASSION? IT’S OBSOLETE(I am probably misspelling words badly but sometimes words don’t look right anymore, oh forget it). I WISH YOU & YOURS WELL, REGARDLESS.SINCERELY DGARRETT
Personally, I wonder if it would ever be reasonable to help manage medical delusions like this with placebos along with treatment of the psychological or physiological underlying causes. On the one hand, going along with a patient’s delusion is surely risky, on the other, it could get them back to a functioning level.
It’s strange the vehemence of the crankiness that has resulted from this post. I suggested that news reports not report on such nonsense as humans being eaten alive by bugs (when it clearly can be ascribed to a different disorder) while accepting that the people that are afflicted by such symptoms are not crazy, and deserve compassion and careful treatment by medical professionals.
It is clear, in the cases reported here, and in the case of Morgellons, that the cause of the disease is not a bug. A bug is macroscopic, it is observable, it can be isolated, identified and tracked. I have never said the the symptoms aren’t real, despite the critics assertions I’m trying to dismiss these patients as nuts.
Let’s reiterate real quick the basic things to take away from what I’ve written.
Now, Morgellons advocates, we’re not saying you’re not suffering. We’re not saying you’re imagining your symptoms. However, what you’re attributing your symptoms to does not exist. There is not a bug eating your skin. Sorry, you are wrong. That doesn’t mean you’re crazy. That doesn’t mean you should be mistreated by doctors. But it does mean that reports that suggest people are being eaten alive by bugs and create fear and panic about non-existent disease vectors is seriously messed up.
Is there something left to criticize if we stipulate to these facts?
Khan. It’s already happening.
While medicine is usually accused of a conspiracy to keep people sick, there are always those rebels willing to sell a the magical cure, for a price.
MarkH,
I sit here tonight in PA, just a few states away from you..I told you I am NOT highly educated, or computer literate for that matter..what I am is a divocred woman, 39 years old, with no children..What DOES matter to me IS my family..this is NOT some scientific BS account of Morgellon is it real vs. not real..This is my Mothers LIFE…For Gods Sake, PLEASE, read my post with your HEART..My Mother DOES have bugs..ie: collembola and others I can NOT identify..for some unknown reason they are attracted to her person and are finding a home in her hair/scalp/body..This has been an ongoing problem for years and damn it, I NEED HELP…Yes, her feelings are justified, because they are REALLY happening to her..If you just contact me..I can prove she is NOT delusional in any aspect of her life..including being a host to bugs who should not be living on humans..All I’m asking for is you to keep an open mind..LOOK FOR YOURSELF…tonight, I watched her pull 4 microscopic bugs off of her scalp..I watch my amazing, lively, spunky, Mom decline mentally and physically because of this illness…LOOK FOR YOURSELF—Don’t just believe my words..I can show you medical evidence saying she’s not delusional from a dermatologist/physiologist…and I will GLADLY bring her to you, along with the parasites..it’s real easy to contact me..suzzie38@gmail.com
Dear Doctorknow-it-all
Dead this Blog. It is a compilation of confirmed collembola infestations from around the world and over a period of 130 years. Have you the intestinal fortitude to see the errors of your brainwashed ways????????
http://collembolareferences.blogspot.com/
Mark H,
How’s it going? I just decided to weigh into the debate purely on the basis that I’m as crazy of the rest of them, and therfore have my own position to put.
The raison d’etre for your original post was the media’s role in spreading medical panic. I agree with you that the media is a powerful tool for spreading information and human beings are essentially herd animals and will panic en masse with little provocation. Juxtoposing medicine, fear and mass media can produce socially profound results and there is a clear ethical role for the media to not stampede the herd with disease scares.
That having been said I consider it reasonable for the media to hold up Morgellons as an unusual medical phenomenon which may have profound social ramifications as mentioned above. In that instance the media also has a duty of care to agitate, on behalf of the populace for a definitive answer from the medical community.
So there is a fine line the media must walk. While I can appreciate your point I contest your placing of the Morgellons situation in that context.
Morgellons is in fact a real disease.
It’s a very real, very tricky illness to get a handle on. It can present in a variety of ways, many are listed on the multitude of websites and some of which are fortunately yet beyond my experience. There is one diagnostic commonality which unequivocally defines the condition. This is the “fibres”. A quick scan through the reams above didn’t pick up on any mention of fibres so I’ll briefly expand.
Very small fibres can be found on the skin of any person with morgellons. They are most often translucent but also regularly found in green, blue red/orange and black combinations. Make no mistake these fibres are NOT textile in origin. Unless you know of a textile which can either partially or completely bury itself in a persons skin. Sounds like science fiction I know, but please, bear with me. I cannot give you an accurate size to these fibres however they are virtually indiscernable at 5x magnification but clear from 20x or above. They are also, I suspect, the vector for the disease. I also undersatnd that these fibres auto-flouresce under UV light but I don’t have access to UV lights or discotheques to verify this statement.
Why a physiological anomaly so apparently simple to verify remains so contentious is surprisingly easy to understand.
I have considered that doctors have constraints on what pathology they can order and the length of consultations.
These factors seem quite an impediment to ‘best practice’ health care. While Medicine is well geared to diagnosing both the mundane and the unusual it seems less prepared for the unlikely. And clearly anything with minute multicoloured fibres in its lexicon has got to be unlikely.
Then there is the well established philosophy in medicine of the psychocutaneous nature of dermatology. There is even an ‘off the shelf’, stock diagnosis for this sort of behavior – Delusions of Parasitosis. And what a diagnosis! It even comes with the irrefutable Catch 22 of patients being rationale in every other way except in this fixed belief. Even logic won’t get a hearing in such a patronising atmosphere.
But there is a final impediment to medical science taking this seriously. Peer Pressure. It effects all of us in our lives and is far from discarded after adolescense. All professionals look to their peers for support and guidance and this is no less the case in the medical profession. I imagine it would be quite a leap for a family doctor to ring a dermatologist or public health department and tell them he has a patient with all the symptoms of DoP but also multi-coloured fibres coming out of the patients skin. He might even risk being accused of another delicious Catch22 hanging around Morgellons, the ‘folie a deux’.
So there are some very tangible reasons that doctors might not be able to diagnose this condition. But they should report what they are capable of observing if they are prepared to look more closely.
In closing I believe it to be a vapid strategy to use the word internet in the context of Morgellons as if morgellons unequivocably falls into the ‘only on the www category’. The internet is a means of communication, it brings people together (like on here) and for many morgellons people, the condition predated the internet and to assert otherwise is foolish and arrogant.
Horatio: “O day and night, but this is wondrous strange!”
Hamlet: “There are stranger things in this world than in all your philosophies, Horatio”
Stuff like this makes me waver between pity and compassion for what people are going through, and anger at the hostility people such as poster Niels show towards skeptics.
Guys, Mark isn’t demeaning you or trying to hurt you. He’s trying to help. He’s not saying delusional parasitosis isn’t a problem, or that you’re not suffering. He’s not insulting you by pointing out that there’s a mental disorder involved–mental disorders are common and nothing to be ashamed of. And they can be treated by responsible psychiatric professionals.
He’s just saying that the news media and the quack “doctors” who spread this stuff around are only making the problem worse by encouraging people’s delusions.
I wish all y’all the best. Please don’t mistake skepticism for hostility. The skeptics just want to make sure that people get real treatment and aren’t being misled or scammed by irresponsible quacks. They want you to get better just as much as you want to get better.
A note to the cut-and-paste trolls. By spamming this blog with your lengthy cut-and-paste articles you end up defeating your purpose, which I presume is to heard. When I see a string of lengthy posts of a similar nature in a blog I tend to skip over them rather than actually read them. Please keep your comments succinct and people will actually read them. If you want to provide more information give us a link rather than clogging up the posts.
No, but looking over the comment spam and baseless accusations, some of them doesn’t work too well in the brain department either. It is one thing to feel abandoned and desperate (though since there are treatments, it is probably in some cases partly self afflicted), quite another to more or less press other people into believing they are nuts.
But the brain can do the damnedest thing. I visited US for a long period and after that I most often involuntarily interpreted a peripherally viewed dark spot as a speeding cockroach, especially when I was tired. Which bugged me greatly, since I generally like bugs otherwise. 🙂
It took quite some time to train away the misinterpretation, of course partly because it was accidentally triggered. And that was for things I could easily check the real deal of myself.
It seems that everybody comes from a different background, but a person must be able to be moved by reason, and to be able to move away from strong feelings that others may try to implement upon us at times. If a person can’t be moved by evidence and reason, when ALL of the evidence is seen, heard, and viewed, then they become useless to any cause, and unable to help out in any right way. If the people of any society or movement can’t be moved away from the strong feelings and convictions of the past then they can’t remain productive and prosperous, resulting in lost ground and a stagnated society.
Niels and others have sought to balance things out. I respect the honesty of being able to see the facts. I thank you Mark, because if it feels like bugs doesn’t mean that it is bugs. Not everybody has that view who sufferers, but much of that is produced by the Media who runs with the sensationalism of the story, but the real damage done is that it’s neurological, perhaps moreso, and that part needs to move to the forefront in the Media, with the fibers being an identifying symptom. I appreciate you allowing this opportunity to post various vewpoints on the blog.
I’ve studied the disease objectively for over 2 years, and here’s an objective viewpoint. This is my Website.
http://morgellonsusa.com/morgellonsusa.html
Niels, you have become a tremendous asset for the truth, and I and others appreciate your work. Everybody, let’s keep an open mind and see what evidence is out there, then we may be able to actually help in the right and proper way in the future.
Sincerely,
Greg
Hey Wes,
Please spare me the compassion and pity. I’d prefer you utilise that energy to consider the possibility, heaven forbid, that the medical profession is fallible. I hate to fall back on a cliche to make the point but we live in a world of constant change. Isn’t it just a little bit possible that something new could come along that is very different to anything seen before?
No one I’ve spoken to with morgellons would wish any ill will on the author of this blog. We just get a little frustrated after a while of people avoiding central issues to reinforce tired maxims.
Hey Torbj?
You mentioned treatments, could you please let me know what those treatments are? I wasn’t aware that morgellons had any treatments. Unless of course you are referring to treatments for an until recently, obscure psychiatric condition known as Delusions of Parasitosis. If that is the case you have erred in your assessment of the situation. Perhaps the salient difference between your ‘speeding cockroaches’ and these ‘coloured fibres’ are the fibres are TANGIBLE not hallucinatory.
I don’t know much about philosophy and stuff but isn’t this constant inability to accept the possibility that this is real in itself denialism?
Over to you Mark…
I linked a page of people offering “treatments” for Morgellons. There’s also the apparent tendency of people to treat themselves with lindane or pesticides to try to kill the “bugs”. This is a bit scary.
As far as the fibers? I’ve seen the images. You guys are looking at lint and kleenex fibers. Sorry. I’ve seen all the evidence that you guys put up in this regard, and it’s completely unconvincing. If fibers are actually emerging from the skin in seconds as is claimed, where’s the footage? Instead all we get is matchbook sign, after-the-fact images of lint. The fibers in the skin get there from scratching.
Finally, denialism is a specific set of tactics used to debate when the evidence is against you. I don’t think the evidence is against scientists on this one. In fact, looking at the comments on morgellonswatch you see the same tired conspiracy theories, cherry-picking, fake experts, moving goalposts and logical fallacies from the Morgellons advocates.
The mistake that is being made, and I realize they can’t help this, is that they’re refusing to accept that physical feelings and their own senses can be lying to them. Yes, the feelings are real, but they are being wrongly attributed to bugs and lint and whatever else is being ground into the skin as they excoriate it. Your symptoms are real, the suspected causes are not, and it’s a disservice to people to direct them away from real medical care to instead cover themselves with pesticides and poisons and whatever quack remedies people come up with while claiming that anti-psychotics never work as Niels did. That’s why this news story is irresponsible, that’s why the Morgellons advocates are doing no one any favors by encouraging self-diagnosis of DP as something that it is not. All it’s doing is diverting people from care that could actually benefit them under the guise of trying to investigate a new emerging illness. The evidence is it’s not a new illness, it’s actually a very old one.
Mark,
I evidently attributed more sense towards you than I should have. You take a Website’s word for something, which a close look would reveal that what they say is lint is quite the contrary.
And you say that this is lint?
http://morgellonsusa.com/morgellonsusa.html
http://morgellonsusa.com/images/spt.jpg
http://morgellonsusa.com/images/sp13.jpg
http://morgellonsusa.com/images/spu.jpg
http://morgellonsusa.com/images/spw.jpg
http://morgellonsusa.com/images/sp2.jpg
http://www.youtube.com/watch?v=ylyrArOMxP8
http://www.youtube.com/watch?v=R-wFLxR5CAI
http://www.youtube.com/watch?v=8eeAPwII_6Y
http://www.youtube.com/watch?v=lf-VjgkQXzs
http://www.youtube.com/watch?v=OrCisSX_zb4
http://www.youtube.com/watch?v=XTOEp-8dx9I
I’d say that you’ve got an agenda that doesn’t make any sense. Because you demand that somebody produce it in such a way that isn’t available at the moment, then you will not believe it.
Everybody has seen video of the African continent, but does this mean that if you haven’t personally seen it in a way that you would determine, then it’s only dirt in a cup of water. It seems that you like to appear less dense than I’d originally thought was possible.
It appears that speaking with you is a lost cause and complete waste of time.
I just wanna say that although I’ve never come in contact with someone who has Morgellons, I do believe that there is more to it than just in the person’s head. What about the evidence? If it is not real then where do the fibers that are being pulled from their bodies come from? I believe it is a form of chemical warfare. I have an autoimmune disease and when I started complaining of pains in my body especially the feeling of needles in my elbows everyone thought it was in my head. Even the nurses that drew my blood kept telling me there was nothing wrong with me because I was only 24. When my blood work came back with an ana level of 897 that silenced them and they couldn’t figure out why I was still able to walk and function day to day. Just because it’s different and not being acknowledged by the main stream doesn’t mean its not real. If the critics would spend more time studying it than coming up with excuses they will realize that it is slowly taken over the population.
Greg. Yes. That all looks exactly like lint to me. Fibers from cloth, cotton, tissue etc. That doesn’t look any different.
Stormy, I’m not doubting that their symptoms are real, but the fibers and bugs growing out of their skin stuff is pretty silly. They say they see them growing out of their skin in seconds! Really? Afterward you get images and video like they show here, they’re thoroughly unconvincing. You never get videos of these things actually growing out of their skin like they claim. And chemical warfare? What? You see why people aren’t easily convinced by advocates when you hear loopy theories like that one. That’s one of the warning signs that this isn’t legit – their medical expert comes across as a total crank (just look at the letter Niels cut and paste above). It’s all the usual crank arguments.
They are making a medical claim, it really is up to them to show this is different than the likely diagnosis of DP. The CDC is actually investigating it, and will give a report in about a year. If they find something unique and amazing, I’ll admit I was wrong. But until then evidence is pretty thin that this is a new emerging disease.
Believe it or not scientists actually are interested in discovering new things, new diagnoses, new illnesses – it’s why we get paid. But in this case there is a better explanation for the signs and symptoms, we need more evidence to be convinced than this classic matchbook sign stuff.
Well Mark,
Thanks for your honesty. Not in your words that you say, “It looks like Lint” because I know that this is NOT an honest evaluation. But I’m speaking about your being honest in the above mention of yourself at the top left portion of this page “underneath your picture”
1) HONESTY: Where you appear to be asleep, yes, mentally asleep.
2) HONESTY: Where you state that your “interest is in denialism” and “concerns the use of denialist tactics to confuse public understanding of scientific knowledge”
3) However this part: Mark Hoofnagle is a MD/PhD Candidate in the Department of Molecular Physiology and Biological Physics at the University of Virginia, seems to be an absolute waste of time because the two don’t seem to mix very well, seeing that you would deny, resist and confuse yourself from researchable findings that you’d scientifically seen, observed, established and documented in a proper setting for the purpose of establishing the truth of a biological and physical event or circumstance.
Oh Mark,
Actually I’m not a conspiratorialist, and for myself have not stated the things of bio-terror, but I thought that the observer was simply saying what it reminded him of when he’d seen some of the photos, etc. I have no “Theory” but I’m only hoping for some real research to become established and completed.
I do have some videos of which the fibers were growning out of a Doctor’s toe, (yes it was growing and moving at the same time) which also did air on “National Television” at one time, on a 60 minutes “Medical Mystery” Documentary. I could send you the files Mark, but I know that I would be wasting my time with you here, based upon the reason for this blog, of which I don’t even know why I’ve spoken to you here.
Yes, this has become rather evident, so continue to be confused, challenge and confuse others
Hey Mark,
Thanks for your response to my post.
Could you read the ‘letter to the editor’ at this link to the June 1 2007 edition of Psychiatric News and give a response in the contest of the discussion so far.
http://pn.psychiatryonline.org/cgi/content/full/42/11/24-b?etoc
You will note the author, like yourself, is an MD and with direct experience of Morgellons patients he articulates our position in more professional terms.
Thanks
Any response at all? What ever happened to spirited repartee?
Further reading? try,
http://www.mayoclinic.com/health/morgellons-disease/SN00043
MarkH: Dr. Wymore at Oklahoma State University and an FBI crime lab said they were not any known fibers. But I guess you can tell more from just looking at them then the silly old FBI database. Dr. Citovsky at Stony Brook found agrobacterium fibers in the 6 morgellons patients tested and none in the control group. I guess these researchers are having delusional researchititis according to you huh?
Thank God that there are still real researchers willing to stand up for the truth. The truth, as ever, is far stranger.
Mark,
Being a conservative myself, I CAN understand your position..to a point. I know when saying my Mother is having a huge problem with microscopic bugs living on her person, it sounds odd. From the outside looking in it would make you question ones sanity..My problem with your theory is as follows: Having access to a laboratory and having every opportunity to study this illness, you instead have automatically came to a conclusion, based on photos posted on the web? Where is the science in that? To determine a diagnosis without one bit of research on your part? Or am I wrong, have you taken the opportunity to send out some of these fibers for analysis? If you have please correct me..
A fiber is a fiber but a bug is a BUG..there is no mistaking it..little eyes, some with wings, some without wings, antennas, legs, some long, some round, some with hairs..yeah, sounds crazy..I know that..but it’s part of my life..I see them every time Mom turns upside down and shakes her head..I WISH you would medicate ME..do you have any idea what it must be like for me? It’s so simple for you to judge from afar, deciding who is or who is not delusional? How can you possibly do that? Is it even ethical? How you make a general diagnosis for every person just because what their saying is something odd? I’m sure there are many who have contracted illnesses from the internet..it’s called hypochondria, as I’m sure you’re well aware..BUT there is no way that ALL of these people are delusional..just can’t happen..Some are very highly educated, spent a lot of time and money to become successful, do you think they would put their jobs/reputations on the line? for what reason? they have everything to LOSE…
You started this blog…why?…if you think it a diagnosis of DP, then when you see these affected people, why not just write a DP diagnosis and ‘next’..go see another patient..why spend the time, beating a dead horse, when you obviously have already made up your mind?
When you say they just feel like they have bugs crawling on them, that’s too general of a diagnosis. You give me a medical reason…why these microscopic bugs are infesting my Mother..and better yet…PLEASE tell me how to get rid of them? Ivermectin, Elamite, Rid..sorry, tried them, they don’t work..so what do I do next? All these highly intelligent people, with so much knowledge between you, put your efforts into something productive..You can write a million blogs to debate this or that? but how does that help anyone when you go into it already with an answer but NO research to back up your position..
Mark…find a lab..have these fibers analyzed, chemical analysis done..IF YOU WANT TO MAKE AN ACCURATE DIAGNOSIS..
Success is not all about who has this degree or that degree..I worked 8 years for a billionaire and guess what, the day he died, I was the ONLY one there with him..In the end, it’s all about how you have lived your life, and who you have helped along the way..
I wish I had 1/4 of your knowledge and access to the resources you have at your fingertips, because you can bet your last dollar that I would not be spending my time on a trivial blog..
Thank You for you time, and I will bother you no more..best to all..suzzie
The photos on morgellonsusa (lined above) look EXACTLY like lint. I took some photos of lint using the same microscope they used (Digital Blue QX3), and the results were identical.
http://morgellonswatch.com/2006/07/11/fuzzballs/
You guys??? It’s really just too bad, there’s no words to describe your idiocy. Here Randy Wymore makes a statement about “MorgellonsWatch” and their ridiculous, and ludicrous idiocy.
http://morgellonsusa.com/morgellonsusa.html
http://morgellonsusa.com/Pg16.html
Right at the Website that you mock. Why don’t you guys go to one of these conventions, or submit an article too, like the Professor Wymore mentions. Because you’ll be laughed out of the doors. It would be real funny, but not to yourselves.
So how does it feel to appear as stupid as you wish to be? Well, I guess you can deny that too. You’ve only hurt yourself. Maybe you could get a job at the Mickey Mouse Club, but don’t work on me.
Bye
Hi Margellons,
Yes, Wymore told you that it’s not lint. I’m sorry that you like appearing stupid, but you can’t help it. Get another hobby. Maybe you could argue that dogs don’t have noses or something like that. It follows the same logic, which you haven’t got.
I like it, because he tells you right to your face, but you got ta take off your clown mask to see it. Go to the conventions like he mentions to you Margellons. Don’t you like it when the scientists call you the insignificant little mind that you are. All the researchers are laughing at your stupidity, so nobody has to worry about you.
Bye
Wow. A link with more pictures of lint. I’m sure to be convinced now.
That site isn’t a takedown of Morgellonswatch at all. It’s just the same cranky contortions.
Further, I love how they say it’s associated with lyme or “chronic lyme”. This disease does not occur in the Southwest. Something like 5-10 cases of lyme are reported a year in the south and southwestern states. This is not the source of the problem, and the people giving lyme diagnoses to people living in non-endemic regions are either quacks or not doing a good job tracking down false positives.
Ah, Niels is back.
They are investigating it. We’ll see what their report says. I would go with their opinion – but they certainly don’t say that Morgellons is a real disorder. Maybe they will find evidence for a new disorder. I doubt it though.
MarkH, I suppose the only way for you to begin to take this mystery seriously is for you yourself to study the disease. Why don’t you contact doctors who are conducting research and pathology? Why not seek out patients with symptoms and study the filaments? Your skepticism is only as refreshing as it is functional, and merely spouting your opinion doesn’t add anything to the scientific lexicon, whereas if you were to exercise your considerable powers of denial while doing actual scientific research you may be able to back up your empty and frankly alarming head-in-the-sand rhetoric with some actual proof (i.e. “those fibres, when sent to a lab, were proven to be common textile filaments”). Until then you’re simply a quack on the other side of the debate.
Perhaps contacting the lab in the excerpt below is a start:
Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a Morgellons sample against known fibers in the FBI’s national database. “No, no match at all. So this is some strange stuff,” Pogue says. He thinks the skeptics are wrong. “This isn’t lint. This is not a commercial fiber. It’s not.”
The lab’s director, Mark Boese, says the fibers are “consistent with something that the body may be producing.” He adds, “These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism.”
Like I say, we’ll see. The CDC is doing an investigative study. If they find something interesting I’ll believe it.
In the meantime I don’t accept a police crime lab as a reputable source for examination of pathological samples. Margellons post also shows why this is not convincing evidence.
Nothing so far shows this is anything but matchbook sign.
This one may be better.
Hi Mark,
As you can probably appreciate we Morgies luv people like yourself who provide us with a forum to express our points of view. I thank you for the opportunity to do so.
Basically I consider your position reasonable for that of an observer. However, in the case of what I believe to be an infectious condition, to not participate in a solution is to be part of the problem. To deny that a problem exists becomes trite in the face of the available information.
The recent public pronouncement by the CDC on this matter is in itself a significant flag of a concerning medical phenomenon. This position is given weight by the research being conducted under the umbrella of the National Center for Zoonotic, Vector-Borne, and Enteric Diseases.
Of equal significance has been the fact that the CDC page on Morgellons is in fact an exact copy of the email previously sent to registrants at the CDC Morgellons email address. That address has been active since at least June 2006. In that 12 month period the CDC has made no official announcements on that investigation and for a first time reader of the CDC page one would think the CDC is just beginning the investigative process.
It would appear during the last twelve months the CDC has in fact done nothing about Morgellons. It has not apparently formed its much touted ‘multi-disciplinary taskforce’, it has not contacted any Morgellons patients or their treating physicians with the view of clinical investigation, it has not formed a working partnership with the Californian State Governement to investigate this condition in that state, and it has not provided any meaningful advice to individuals, the general public or their elected representatives regarding Morgellons.
While bureaucratic incompetence is a fact of life of modern democracy, such levels of inactivity by the CDC hint of more than ineptitude or laziness. As tempting as it is to explain this behaviour with grand conspiracies, a simple one will suffice. It’s a theory that every Morgellons adherent will agree with and that is:
We are telling the truth. We are very infectious and this is so much more serious than ‘itching and stinging’ and ‘lesions’.
And nothing stops it.
And Mark,
when it’s your turn…
you too will understand how we put up with platitudes and derision in lieu of investigation and treatment.
And why we never miss an opportunity to tell anyone with an open mind to listen, look, and be concerned.
Niels, why would I bother continuing to argue with a troll who calls me a fascist and makes arguments based on the genetic fallacy? This is not a valuable use of my time.
Further, STARI is not lyme, and lone star ticks do not spread lyme. If you want to say that STARI is a concern, whatever, it will just be another premature claim without any data to back it, but you can’t say that Lyme is endemic to the Southwest that is simply false.
I can’t believe this thread is still active.
I’m converted Niels! You’re right! It’s all a conspiracy of HMOs and doctors and the government’s tick-warfare program.
I can’t believe that I was unwilling to believe such credible evidence. And Chronic lyme! Why didn’t I think of that quack diagnosis in the context of Morgellons. Clearly I’ve been a fool.
No, you’re not a crank. These are great theories, worthy of respect and thorough intellectual consideration.
This thread is over.