With the current media attention due to the CDC announcement and press conference (transcript here), this is a good time to recap what is known about Morgellons, specifically the many misconceptions.
The CDC is investigating not because the evidence indicates that there is something going on, but rather because of the intense political pressure and media campaigns orchestrated by the Morgellons Research Foundation. This is very unusual. Psychologytoday.com says:
The [Morgellons] debate has grown so heated that the federal Centers for Disease Control and Prevention got involved, and not because they wanted to. They were inundated with calls from irate people who say they have this disorder and want answers. “More typically we get a very credible indication of an emerging problem from an official source,” says Dan Rutz, spokesperson for the CDC. “This was driven by lay people and some clinicians who are frustrated and not sure what to do with these folks.”
The “lesions” on Morgellons patients look exactly like the lesions on patients with Neurotic Excoriations. i.e., they look like they are self inflicted. Many Morgellons patients confess to “picking” their lesions to get the “morgs” out, and to obsessive scratching. I was rather surprised so see Dr. Joe Selby of Kaiser point to the photo on the left (below) and say: “They don’t look like any recognized skin rash” (on ABC7). When there is a very well documented condition that produces an IDENTICAL “rash” (see the photo on the right, or click here for more). Several of the photos that ABC7 used to illustrate “Morgellons” are actually lifted directly from the second dermnet.com page on neurotic excoriations.
Update: Dr Selby clarified his remarks via email:
What I’d meant to say was that the lesions don’t look like a characteristic rash other than self-inflicted lesions. We’d been speaking off camera about shingles and other characteristic, recognizable lesions. These do look like neurotic excoriations. [this does not imply] that I think these are simply neurotic excoriations. An ultimate purpose of our research is to determine whether there is reason to suspect that they are something other than or in addition to neurotic excoriations.
There are lots of cases in California because there has been a lot of sensational local media coverage in California.
The sensation of things crawling on and under your skin is a common medical symptom known as formication. It’s a symptom of hundreds of medical conditions, ranging from menopause and diabetes, to the side effects of many prescription drugs such as ritalin. Having this sensation does not mean someone is crazy. It’s just a symptom.
The fibers that people report finding are typically very small, a fraction of an inch long. Visually they appear very much like common household lint. Run your finger across the top of your monitor – that’s the type of stuff. While people claim it emerges from their skin, nobody in the last five years has produced any evidence that this happens. Not one simple study. Not one photo. Nothing. Just a lot of anecdotal evidence – usually by the patient. This photo is of my laundry lint.
The photos that people post online are just normal stuff under a cheap microscope. I took a lot of similar photos to demonstrate this. Feel free to use them for any purpose.
http://picasaweb.google.com/morgellonswatch/NotMorgellons
Other than the fibers, which you find on your skin when you look, even if you don’t have Morgellons, the list of symptoms attributed to Morgellons is very long and poorly specified and is shared by several other conditions, including Menopause.
It’s not a battle between “a real disease” and “just a delusion”. The real question is if all these people have something in common, or if they all have their own specific medical problems, and have just self-diagnosed with Morgellons because their doctors have been unable to cure them. Even if some are delusional, doctors don’t “dismiss” them. Delusions that affect your health are very serious, just as serious as physical illness. Frequently, however, delusions are simply a component in a more complex medical condition. See secondary organic delusional parasitosis for example.
These people may have seen the movie “Bug”, directed by Freidkin.
How then do you explain
1) how so many of these people have similar visual manifestations of their syndrome if not all of them have a history of mental disorders which would lead one to pick at oneself
2) analysis that indicates that these fibers from patients across the country are more similar to each other than to fibers from their region or from common clothing and household items
And if the fibers appear environmental not biological, how do you know that you know all the biologicial fibers out there? What if it’s a new kind that you’ve never seen before, one that looks environmental but is in fact biological?
1) They don’t. They find fibers. Fibers generally look the same. Unless by visual manifestations you meant something else? Like the sores?
Why does someone need to have a history of mental illness in order to pick at their skin? What if that’s the first thing like that they have done?
2) What analysis?
Interesting Nightline (abc News) report 16 Jan 08… shows retrieval of fibers from an inflamed area of a patient, and includes analysis by a forensics lab that failed to match the fibers against the many thousands of fiber samples on file…
Anybody can take pictures of dryer lint and use it to make a counterclaim that there’s nothing really wrong… Let’s see your evidence debunking it and not photos from your dryer…
Yes, many of these people are self-diagnosing, and some of them are certainly reaching an invalid conclusion. The psychological conditions certainly do exist… but I’m surprised that you’re attempting to classify these patients into those conditions solely because you don’t believe what they say…
Don’t go on a cruise ship… you might fall off the earth!
I’ve not seen the whole Nightline piece, but it looked like a re-run from last year (actually 18 months ago), with an interview with Anne Dill.
So where is this analysis? Is it the Ron Pogue thing again? They find one fiber and could not get it to melt?
I’m not classifying anyone. I’m simply saying there is no evidence of a new disease.
Yes, you’ve got people claiming there is a new disease. That’s fine. But no, there is NO evidence.
Looks to me as though perhaps the epidemiology might coincide with the incidence of Methaphetamine abuse? The sore look the same, the sensations as described (formication) and the paranoia in re: “bugs” so similar to methamphetamine psychosis. Just an observation that if it walks like a duck, quacks like a duck …might just be a duck!
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 said in 2006. He thought the skeptics were wrong. “This isn’t lint. This is not a commercial fiber. It’s not.”
from
http://abcnews.go.com/Nightline/Health/Story?id=4142695&page=2
Tulsa Police Department Forensics Lab saying that the collected fibers are not lint.
MorgellonsWatch Website needs to begin to be investigated for hate crimes.
-an avid reader
California senator Diane Feinstein helped push this $338K study though the CDC. The study is being done by Kaiser. <>
Currently the government funding for basic research (also called frontier research, it’s what lays the groundwork for discovering new drugs and treatments) in cancer, diabetes, HIV, Parkinsons, MS, lupus and other diseases which affect hundreds of thousands more more than the 11,059 families registered with the Morgellon’s Research Foundation has been slashed to the point that less than 3% of the grants requested through the National Institutes of Health are granted (down from over 10% in the late 1990s). That $338K represents three year-long research grants to work on developing cancer vaccines, regulating the immune system to responses to HIV, or working on immune system regulation for diabetes, multiple sclerosis and any other number of illness had it been NIH money. I realize it’s a different part of the government’s medical research money pie, but you get my drift here.
Over 20 million people in the United States are diagnosed with diabetes. In 2004, according to the CDC, 555,886 people died of cancer in the United States. There are approximately 350,000 people in the US with multiple sclerosis. And there are less than 12,000 families who have registered with the Morgellon’s Research Foundation.
The CDC has been fielding dozens of calls a week from people suffering from Morgellon’s. The Morgellon people are VERY squeaky wheels–that’s not to say they aren’t suffering from something(s)–and California Senator Feinstein saw a way to make constituents and a VERY large California-based corporation very happy. $338K to run tests on at most 500 people through one institution, that’s a big fat pork belly.
I’ve been in Medical Practice for more than a decade in a variety of clinical practices, including some in California. The few patients I saw having these complaints–were obvious substance abusers–illegal or prescribed–or those with symptoms of an anxiety disorder or other psychiatric illness. I also treated a good number of people with scabies mite infestation in patients with poor living conditions.
Using that much money to fund this study is just awful when the uninsured or underinsured can’t afford an office visit or essential medicine.
A good study is going to find a clear link between substance abuse and/or pscyhiatric illness in this group, and thus I hope these patients get the right type of treatment rather than encouragement that they harbor alien fibers in their bodies.
new here, but I’ve been following Morgellons off and on for a few years. Figured I’d check back here after seeing new media coverage of the recent developments.
I’m not convinced either way about Morgellons…but don’t you guys think that it’s jumping the gun a bit to start saying that these people might all have substance abuse problems? There are children that claim to have this disease, correct? Maybe I’m wrong, but I can’t see this many people claiming to have this disease being secret drug addicts.
Anyways, my 2 cents.
My sympathies to everyone that feels they have this disease. (and I don’t mean that sarcastically)
– Stu
…actually…to add one more thing…I’ve read that ADHD meds can bring on similar “crawling under the skin” sensations…could that be what the children who feel they may have this disease are actually suffering from?
– Stu
I think it’s a grave mistake to try to attribute “Morgellons” to any one thing. It’s pretty clear that there are a very large number of conditions here that can product these symptoms. Meth is one, but I suspect it’s only a fairly small percentage of the cases. Ritalin can produce formication, as can many prescription medications. But there are a lot of other conditions as well, menopause for one.
It’s a problem that over and over people try to “solve” Morgellons by finding a single cause, while overlooking the more obvious, but more complex, solution: that there are multiple possible causes, and Morgellons is not actually a distinct disease – it’s just a big list of symptoms, artificially tied together with the mistaken belief that fibers are involved.
I don’t know anyone who has this disease; however, I’m very concerned seeing the vast majority of cases in large, metro areas in the Southern part of the US. I’m amazed at people who don’t want to consider that this is a possible problem disease on the rise.
I’ve followed this story for several years because it is frightening if this is a real disease, which it has to be. It’s just too many people. Yes, there could be some crazies in there but imagine if you had Morgellons, noone believes you, and there is no relief from worms or whatever it is coming out of your skin.
I couldn’t believe that it wasn’t being taken seriously by the medical field. I don’t understand doctors that don’t want to know more about this condition, in the case that it IS a problem. I mean, if you are halfway intelligent- don’t you want to know why? Of course, since we don’t know if it spreads through human contact, I guess there weren’t people lined up waiting to collect fiber samples. Thank goodness the CDC is finally studying it.
Of course people are concerned about those who are suffering. If someone has sores on their skin, then that’s a horrible thing, and they need help.
The question is not “should we help them”, it’s “do they all have the same condition?” and “are the fibers anything to do with their condition?”.
It is time to exhibit an open mind about this disorder and quit bad-mouthing those who say they have it. I don’t claim to have Morgellon’s, and because of my education in behavioral science, I’ve applied the possibility of a mental disorder to the person I know who has it. He is, by the way, definitely not a drug abuser. There is no evidence of a mental disorder in this sufferer who is well-educated, high-functioning individual from a family of upper middle-class, science-educated, hypothesis-testing, frequently skeptical sort of family. It is apparent that the reason the CDC is taking this disorder seriously, at this point, is that a number of people like the sufferer I know (well-educated, high-functioning, and lacking a history of drug abuse) has finally reached a critical mass and made an impact with their congresional representatives and the CDC. Anyone who claims a solid background in science should be careful at this point to listen carefully to the evidence before disregarding it. The numerous examples through history of scientists focusing on the wrong aspect and missing relevant information with an erroneous conclusion resulting should be kept in mind. There is something going on here that isn’t about drug abuse/addiction. Keep an open mind.
Morgellons: My Reaction
It is to me very inhuman, insensitive, callous and criminal to describe the reality of Morgellons as “in the mind”. We have had this baseless, unscientific and incredible attitudinalism — absolutely apposed to scientific culture — before; and only after more than several people had died was the reality of the diseases that they complained about, in the same phenomenal class as Morgellons, accepted as a medical problem.
Now, let the bio-scientific community examine the situation as philosophical – scientists — I mean, PhD-scientists, if they merit their PhD (Doctor of Philosophy) — and tell me: Is it philosophically scientific — PhD-based scientific declaration — and right to dismiss a thing because one does not know, has not found out, or does not understand its cause? Is it right to dismiss what one sees as “in the mind” because one cannot explain how it got existence? Would a blind person — some people prefer to say “sight handicapped” — say that I do not exist because he or she cannot se me”. Would he or she also not say that he or she does not exist because he or she cannot see himself or herself?
We should be scientists and philosophically scientific enough to accept that not knowing all about how nature reacts, not knowing all the reactions of nature, and not likely to know either all about how nature reacts or all the reactions of nature, when nature’s essence (DNA) is interfered with and transgressed, certain things must happen that are not known to us and, maybe, can never be discovered and known by us.
Why don’t the bio-scientists that are interfering with and violating nature’s DNA and its unpredictable and not-calculatable dynamics or reaction blindly be more rational or reasonable — if they cannot be moral or spiritual — by reverting to just understanding all that they can about nature and not interfering with its essence and, or dynamics, and violating these. In other words, why don’t they live in harmony with nature’s laws, and save innocent people and ourselves these new and deadly diseases and much more of the sophisticated types of the old diseases?
Prince Pieray C. P Odor
Independent Researcher and Public Good Promoter
C/O The University of Lagos, Akoka, Lagos, Nigeria
Dee, I agree that we should not bad-mouth those who say they have Morgellons. They are undeniably suffering, and deserve appropriate help. However there are many possible causes of the highly varied symptoms that people with Morgellons have.
The CDC investigation is due to the work of the the Morgellons Research Foundation. On the MRFs web site they have stories from sufferers. Have a read, and see if they all seem to have the same thing as your friend.
http://morgellons.org/stories.htm
This STUFF,no matter what they call it is FOR REAL.The world can just say….their crazy….until they have it or a family member or friend does…..I wouldn’t wish this on my worst enemy….I’ve seen it first hand.God help us all.
Here’s the deal, friends. Just as medical students are warned about finding symptoms that coincide what they’re experiencing as they begin their studies, resulting in a fear for their own health, if symptoms are published on a widely-read web site for an actual disorder, there will be a certain number of “false” hits by people having some similar (but different in some way, of course) experience. We can’t allow us to let that distract us from the fact that there are an increasing number of reports with credibility out there. As I look at the Morgellon’s site, I keep in mind that Freud treated Anna O. with talk therapy for what was, by current understandings, probably tuberculosis. I believe in the power of talk therapy to help people deal with the emotional sequelae of their physical illnesses, of course, but it is only responsble to cast a wide net in the search for other physical causes before relegating it to the category of brain dysfunction. As my college-age children constantly remind me, there is always something new out there that hasn’t been considered, in part, because professionals in my age group who control the wherewithal are a little to quick to dismiss it due to functional fixedness. Let’s give these folks a fair chance.
Dee, it’s not a choice between “disease” and “delusion”, most of the people who have Morgellons have other physical illnesses or conditions. Just because Morgellons is not a distinct disease does not mean that they are not genuinely ill. It just means they all have different things wrong with them.
Where are these credible reports? The MRF is the organization behind Morgellons, and you just have to read their web site to get an idea of the variety of symptoms and situations that the patients have:
http://morgellons.org/stories.htm
i realy believe i have this disease. i’ve been stationed in CA for almost 9 months now and i’ve been living with morgellon’s for about four. ive never been a drug addict and im in strong mental health. this incessant itching is way to excrutiating to just be in my head. at first i thought it was just a normal rash and took some benydril. that didnt work so i went to the doctors thinking it was scabies or lice (which is prevalant and sometimes inevitable being in the military). i was told not to scratch and was dismissed. I remember spending a lot of time in the Santa Barbara (idk if this is a morgellan’s “hot spot”) area a week or two before my symptons showed up. Another thing i thought was crabs, but after buying anti-crab medication and spending 5 days in a hotel with fresh linens and clothes without any result i thought i was going to have to live with this forever. it wasnt until today that i found out about this and, hating to jump to conclusions, there is little else i can turn to. i dont have ADD, im not taking any medicine that have any side effects,i dont have diabetes im male so i dont have menopause. i havent had any problems like this until i moved to Cali. i cant wear short sleeved shirts or shorts anymore. i sometimes take scalding hot showers to get a moment’s relief. these sores dont go away either. i refrain as much as possible during the day but the nights are insatiable. sometimes i wake up in the middle of the night bleeding because i was scratching in my sleep. i dont even have to scratch that hard for it to bleed either. its hard to say if these sores are my own doing or from a parasite or bacteria. ive never found any fibers in me but i can understand how cotton fibers can get stuck to an open wound when im wearing clothes. im not saying this to prove its morgellan’s as i havent been proffesionally diagnosed yet, but it definately is SOMETHING because while my girlfriend was here from Virginia, we spent a lot of time together and she got it too. i dont know what else it could be and i’d be grateful to anyone who can help me out
milicali, I’m sorry you are itching so badly. I don’t know why you think you have Morgellons though – if you don’t have fibers. Lots of conditions cause itching – has your doctor eliminated all of them?
You may know this already, but itching can be caused by scratching, and it’s actually surprisingly common for people to get into an itch-scratch-itch cycle, where there is no actual physical illness behind the itching, but they are itching because they have damaged their skin by scratching, and they can only get relief by scratching, in an endless cycle. This is also known as neurodermatitis or lichen simplex chronicus.
The treatment there would be drugs to diminish the itching, and cognitive behavior therapy to try to break the cycle of scratching. You should talk to your doctor about it. See also:
http://www.skincarephysicians.com/eczemanet/neurodermatitis.html
People used to say fibromialgia (forgive the spelling) was all in peoples heads.
Doctors are supposed to have the answers and quite often they don’t. It is hard for people who are supposed to have all the answers to admit they don’t and easy to create the illusion of control by saying it is all in the heads of the suffering.
Spend the money get to the bottom of it, what good is money if it isn’t for helping people. $400,000 to run a few tests to see if there is something to the condition is a small price. What is the cost per person in California.
Stu said “…actually…to add one more thing…I’ve read that ADHD meds can bring on similar “crawling under the skin” sensations…could that be what the children who feel they may have this disease are actually suffering from?”
Yeah Stu, that’s a possibility. ADHD is *thought* to be caused by reduced dopamine activity in the amygdala, so people with that condition are given a form of amphetamines to boost that. So, when anyone takes an amphetamine, whether it be speed or for a psychological issue, it can make you feel like your skin is crawling.
This is what the human experience is all about. We are constantly asking questions to find truth. Wouldn’t we want to find out whether this medical mystery is in fact Morgellons or whether it is something else? Why would anyone want to turn their backs on people that are suffering? Why would we want to stop or criticize an investigation to help people? This is about the progression of mankind.
Let’s help everyone from the sick, the poor, in the crossfires of war and never forget that we all come from the same place and we all leave the same way. Let’s just help each other and find the answers to questions that can then be studied and later developed upon to help people with this specific condition.
What does it matter to us if suffering people are asking for help and to be looked at?Most of all, what does it matter in the big picture for you to classify a population of people as mentally ill and go out of your way to criticize these efforts? In the big picture, we should be selfless and help one another. All the energy that you have put into your blog, you could be participating in services to help people in need, again–the homeless, women suffering of domestic violence, children with cancer…
So if a group of people say they have fibers growing under their skin, then let them find out what it is…You are not 100% sure that they don’t either. So let’s find out.
Sure, let’s find out. But until then, stop saying:
and
http://www.mysanantonio.com/news/medical/stories/MYSA072406.morgellons.KENS.1e13fade.html
When there is not evidence to indicate that it is.
And stop making broad statements like:
http://www.ktvu.com/news/9264350/detail.html
When you have no idea of who you are talking to, or what is wrong with them. Apparently to Wymore, the mere fact that someone thinks they have Morgellons makes them “not delusional”. I think people deserve better treatment than that.
I’m not 100% convinced either way. But it seem like some people are. That is very bad science.
I agree with Bob and all of those who think in the same way and as far as discounting what these people say without having real evidence that they are wrong…….wow, not so scientific is it? If scientists were all they want everybody to believe there wouldn’t be so many sick patients in western hospitals, most of which never really heal. I loved one of the interview that was on yesterday where this dermatologist was saying all these people have indeed some mental issue and never once he took even a few samples to prove his theory. That was really scientific, but I guess because he is a “doctor’ then we should blindly believe him eh? I heard through the grapevines that doctors are not always right, and this is in the best of cases. If you are so good and right doctors how come you have full hospitals, how come you feed unhealthy foods to your patients, and how come you give them drugs that may cure them from that one disease they have at the moment to then cause ten more new conditions after the wonder drug cycle is over? google kushi, skinny bith, george oshawa etc. if you want to talk people who actually do know how to heal and not just for the hefty pay cheque at the end of the month. Trust no-one, listen to all. The best doctor for yourself is yourself, learn what you eat, breathe, think and are made of and work with it. Did you know that refined sugar is in everything we eat and even in cigarettes? Did you know that refined sugar is the cause of most of our western diseases and a simple diet change would actually get rid of most conditions we face in North America?
I realize this is not addressed to me, but if I may put in my $.02….
Giveustruth says:
“Most of all, what does it matter in the big picture for you to classify a population of people as mentally ill and go out of your way to criticize these efforts?”
I think there is a major difference between analysis of the evidence and criticism. I also think that when someone has their mind made up, any evidence or opinion to the contrary is seen as criticism.
It is understandable for people to ask for investigation into a controversial medical claim. But I am certain that if the CDC comes back and says there is no pathogen responsible for Morgellons, that it will be chalked up to a conspiracy, or the methods will be contested, and more research will be requested, over and over and over.
Grappa says “I agree with Bob and all of those who think in the same way and as far as discounting what these people say without having real evidence that they are wrong……. wow, not so scientific is it? ”
Actually, that’s how science works. You don’t assume something is true until there is evidence that it’s not– it’s the opposite. You assume something is untrue until you have evidence that it is true. If that’s “discounting,” then I guess science is discounting.
Right–so then this is all much to do about nothing. Let the CDC study it. Let the people who in fact are delusional get their treatment for being so. Then lets determine whether Morgellons is a valid disease or not and treat those patients accordingly and lets get on with it.
We have so much more we can all be doing together for all of the world’s suffering than fall into debates about how things should be worded. Are we a bunch of Sophists here or do we want to make some serious noise to help mankind?
Supposed Morgellons patients are being studied now. Fine. Our heart goes out to them. Move on. Let’s progress together instead, its time that we all rise above this tenuous noise.
It took a number of years for the symptoms of polycystic ovarian disease (aka polycystic ovarian syndrome) to be codified. Once the pattern of symptoms was noted and technology had reached a point that ovaries with cysts could be seen and the hormone and insulin levels charted, a unified field theory of the syndrome/disease came into play.
I assume that is what the CDC is attempting to do with the Kaiser study. However, my first objection is $338K in funding to study at most 500 people, with that money being given because of insistent whining, I mean calling, to the CDC by people, dozens of calls a week, who have a variety of symptoms which may or may not be the same thing, some of whom seem vainly searching for answers and would seize on any web page that lists some of their symptoms and gives them an explanation.
An interesting experiment would be to launch a website with a list of symptoms, give the symptoms and umbrella name and see how long it would take before a group of sufferers joined up and began sharing about their combination of fatigue, confusion, sore muscles, headaches, etc.
Part of human nature is to desire answers for our problems, a REASON. In some cases the reasons are not ONE reason but a collection of things.
I suspect there are several different reasons for “Morgellons,” not ONE umbrella illness, and the CDC/Kaiser study will come to that conclusion. This will not please those who believe they have the illness, they will call foul say the wrong people were examined, that there was bias, that it’s a conspiracy, that samples were mishandled, and so forth, any number of explanations as to why the beliefs of the affected were not supported by medical science.
Yes I believe that people are itching, bleeding, superating, oozing and so on. I believe they are suffering. I also think that there could be compromised immune systems from a variety of causes such as allergies, poor nutrition, diabetes, depression, and so forth.
From the Morgellons page: <>
There is the answer, a bunch of people have a bunch of pathogens. These pathogens each produce their own similar symptoms. Fatigue, joint pain and so forth can be caused by low grade infections and other outside influences,emotional, environmental etc, which in concert with the pathogens give the appearance of a unified illness.
And again, this Kaiser study, a pork belly project pushed California Senator Diane Feinstein that benefits Kaiser, a California based corporation, is not going to please a large portion of Morgellon’s population. There will be some who want to have a disease that is unique, there are some who want to claim ownership of the illness and its cure (out of curiosity, how much grant money has the MRF given out and to whom? any results?), and some who just want their symptoms to end and dont care what the hell they have or what it’s called.
If I want to seriously investigate a potential new disease, I don’t think that sending samples to the Tulsa Police Department is the best way to go. I don’t really expect them to be the most on-the-ball folks when it comes to this kind of investigation.
It’s like when someone has a photo of a UFO and they submit it to some guy who develops photos at CVS for analysis, or someone’s got a bigfoot photo and they give it to a zookeeper to pass judgment. Tulsa Police department is probably great for determining if THIS fiber is the same as THAT fiber. Would I trust them to be able to identify a single, out-of-context fiber? Of course not.
But then again, I’m the kind of guy who, if he found some fibers in a wound would think, “Yeah, bodies are kind of gooey–I bet the fluids in the wound trapped something from my clothes or the couch,” rather than, “ZOMG! The fibers are coming out of my skin I’ve got parasites!!!111!!!eleventy!!”
Morgellons “sufferers” are clearly delusional.
What a bunch of pious, pompous boors you are!! I don’t have Morgellons. I just read about it in The Washington Post Magazine today (Jan. 20) with growing recognition and alarm because somebody very dear to me had the exact symptoms. This person is not insane, is not a drug user, is not menopausal (Michael seems particularly fixated on that as an explanation), and is not delusional. I witnessed the sudden onset of this disease myself and I am a functioning, working, stable contributor to society.
HOW DARE YOU DENIGRATE THESE PEOPLE!! They truly suffer from something so excruciating that we cannot even imagine such horrors. I thought that this was an isolated case and now I find out that there are many people suffering from this. It seems to be spreading pretty rapidly… who knows maybe one of you “pillars of society” will catch it… then you too can know the terror and horror along with the humiliation of being called insane for something you know is real. I’m not a doctor, but if I were one, I’d be a little curious.
Berg, drug use, menopause and delusion are not the only possible options. There are a vast number of causes of itching and skin problems.
I also witnessed this person opening up their skin and removing what we thought at the time must be a worm or parasite, but we were perplexed at the fact that they appeared to be dead or not moving at all. Now I understand that those were some weird fibers. We stuck them with tape and took them to the doctor, who showed almost no interest whatsoever. We live in Maryland and had never heard of anybody else having this condition until now – so how can it be that this person is suffering from mass hysteria? We were visiting relatives in Florida at the time of onset, which we have also just found to be a supposed hot spot for infection or whatever it is.
We have experimented with many self-treatments and found a regime that seems to keep it down, but it must be regularly maintained or it rears its very ugly head again. It’s truly a heartbreaking experience to watch someone you love suffer so…
I have had the same type of sores itching-scratching, “bugs” crawling under my skin from Feb 2007 until Oct 2007 when I went to our Medical School here in Dallas and had a treatment with a light called UVA-1…there are only 3 of these particular kind of llights in the USA.
Nothing helped…I thought I would go nuts! In a way it felt like the itching followed the nerve paths in my body similar to Shingles but it wasn’t the same kind of pain it was a unbearable itching. I went to Dermatologists, Allergists, Gastroenterologists, I had tests, steroid shots (several) No meds helped. finally my Internist referred me to a Doctor at the Medical School in Dallas Texas. After some tests I began this light treatment and it took about 2 months of going 3x a week but it began to stop the incessant itching under my skin. I now have the “wart” looking remains of these sores that were all over my body. It looks just like the pictures I have seen of what people call Morgellons.
The Doc’s arent really sure what it is but at least I have somewhere to go to help me. The lesions aren’t completely gone but the UVA-1 is helping. I don’t think they know exactly how it works…..they say it “resets” the immune system…???
Check UVA-1 on the internet…google Dr. Heidi Jacobe photochemotherapy or phototherapy dallas texas.
we are suffering from morgellons only after trying to save some baby birds i blieve i understand whats happening but not one person will listen to me,they rush me off the phone or out of the office .im not going down without a fight.
will someone with these symptoms please respond to me.not the rude people who dont care about human beings though.
Sandra, you should try to find a doctor who can best treat your symptoms. Internet medical advice is generally not to be relied upon, and needs to be verified by a medical professional who is familiar with your situation.
how in the hell can someone self afflict there own body like in the center of there back noone just wants to take the time to save our lives to much work this day and time.everyones gotten LAZY.if i had somone LISTEN THATS NOT EVEN PHYSICAL, who is willing to stand behind me nip this in the butt once and for all i am fixing to make a public scene because i personaly have had enouph i will not sit back and be quiet much longer and watch my 70 yr old mother suffer with this.
im in the small town of ky like i said we are rushed in and out of the drs office .weve been to 13 drs .do you want to know how we got some of our life back..omish secret.
we the (morgellon suffers) need to pull together and get our lives back
Sandra, on another topic thread I told you to stop using “peroxide baths” explaining that it will destroy the white blood cells that you need to fight infection. Did you mean to say that you and your 70 year old mother are bathing in 35% peroxide, or did you mean 3.5%? Please don’t do that anymore and call this number to get someone to help you and your mother, right away. Call 1-800-273-TALK / 1-800-273-8255 They will listen and assist you.
screw you smileykins and cotton bitch. LET THIS BE KNOWN. THEY KICKED ME OFF THIS WEB SITE LAST SUMMER BECAUSE I CUSSED AT THEIR BITCH ASSES. HAHAH.
MORGELLONS IS REAL AND I DONT GIVE A SHIT WHAT YOU GUYS SAY.
I HAVE A GIRL FRIEND THAT DOESNT KNOW ANYTHING ABOUT MORGELLONS AND FIBERS COME OUT OF MY HEAD AND FALL ON HER BLACK JACKED AND SHE ASKED IF I HAVE A CAT OR DOG THAT GOT THIS STRANGE FIBERS ON ME. OF COURSE I LIE. SHE WAS MAKING OUT WITH ME AND RUNNING HER HANDS THROUGH MY HAIR.
I HOPE THE TRUTH COMES OUT TO EVERYONE BUT I DONT KNOW IF IT WILL.
Hello, Chris. It’s good to hear from you. I was reaching out to Sandra because she’s “fixing to make a public scene”. Is intruding in the conversations of others and blurting obscenities at them a trait of yours?
well i know the truth and you dont. its freaking strange and weird that you spend so much time running this site when a “normal” person would not care about morgellons. and hell yeah i can blurt obscenities. she doesnt want or need your help because you are not the person who should try to help her. because you are nothing, you are worthless and thousands of people that know weird stuff comes out of their skin in front of their eyes knows you are wrong.
I was drunk last night and now i am sober.
Sandra, dont listen to a word that smileykins has to say he has mental problems because he is trying to “debunk” this worldwide phenomenon that thousands and thousands of people are talking about. the internet would not make me imagine that fibers grow out of my skin. THE FIBERS GREW OUT THEN I SEARCHED ONLINE “FIBERS FROM SKIN” AND HOLY CRAP I SAW THESE MORGELLONS SYMPTOMS GO ON AND ON THAT I HAVE EXPERIENCED.
BLACK SPECS,
BLACK, WHITE, RED, BLUE FIBERS COME OUT OF SKIN,
SMALL LESIONS VARIOUS PLACES MYSTERIOUS FORMING,
BEIGE SANDLIKE CRYSTALS FROM MY PALMS
i AM NOT CRAZY I CAN SEE IT HAPPENING
Chris, I’m a female. You, and plenty of other people, say that you’ve been told that you’re crazy, and told it a lot, by doctors, as well as by other people you know. I haven’t ever been told that. I’d appreciate hearing your opinion on whether you believe that “morgellons disease” is an End Time plague.
Sincerely, Smileykins
I’d like to know why Chris doesn’t believe that his diagnoses are accurate. The evidence seems obvious.
just look at the symptoms ,the simularities the people were active in . skin doest crawl continuously unless something is crawling.whenever i feel somthing on my face i can look in a magnified mirror and there are little black specks all over my face.when i dont feel it theres not.even if its not parasitic ‘its somthing’and its real. i know what it is with me and noone can make me think other wise. i am fixing to write a book about my situation it should be out soon.
chris somthing is wrong with my email or i would email you mine is sand@scrtc.com .you can try it dont know if it will work gotta get somone to look at it. i would give you a # but i dont need everyone to call and make my life harder than it already is but it would be nice to talk to somone who is going thru the same crap those who are not will not ever ever ever understand.
Sandra says “skin doest crawl continuously unless something is crawling”
That’s not true. An enormous variety of situations can produce the sensation of skin crawling besides actually having an insect crawling on it. For example, blood pressure medication, or prozac, or caffiene, or methamphetamines or cocaine.
Ok yes, there is such a thing called formication. How do you know that the growing of fibers or the crawling, moving, tangling, biting and twisting sensations are the exact same as what you would experience with menopause or any of the other individual possibilities?
In fact, how do you know that the sensation due to menopause is the same sensation from amphetamine use, etc., etc. Unless you are woman that had a meth problem and has had menopause would know the distinction, but even then all humans react to things differently.
If you don’t have Morgellons, how do you know the sensation that Morgellons patients are suffering matches exactly with delusional parasitosis or menopausal formication?
Just because person A is running a fever, has a rash and is short of breath does not mean that person B running a fever, a rash and shortness of breath has the same illness.
But when a large group shares a common thread about fibers, wouldn’t we need to stop and ask what is this? Sure, why not. Let’s help people find answers without conflict.
So for the people who don’t believe in Morgellons–there is still a chance there is
For people who do believe they have Morgellons–there is chance that you don’t.
Both sides are debating about nothing. No one here is a doctor and if you are a good one, you wouldn’t be messing on this site.
Has anyone considered that we have a limited words in our vocabulary to describe ailments, therefore much of our wording crosses over to many different symptoms and illnesses?
Givustruth, nobody knows if the sensation one person feels from cancer is the same as another feels from cancer. All we can go by is the reported symptoms – which are reported the same with various illnesses. Itching is itching. Formication is formication. The patients with different illness describe it the same. There is no special “Morgellons Formication” symptom.
You said:
and the exact same logic can be applied to finding fibers on the skin. Just because two people both are finding fibers on their skin, it does not mean they have the same illness. Especially since it’s almost impossible NOT to find fibers on your skin.
All I’m saying is that there is no evidence that there is a new disease, and no evidence of involvement of fibers. If you disagree, then please tell me where the evidence is.
i dont know if anyone cares or blieves me but morgellon sufferers (my opinion) has gotten birdmites somhow somway on them .i had a good marriage , good job ,and was with my grandbaby everyday until i brought the birdnest in my house .dumb me. itryed to save bird eggs and i have gotten tiny black specks off of me ever since and my mother is slowly wasting away why cant some dr treat morgellon sufferes with internal parasite meds and see if this goes away. we are not quarentined so therefor the cdc and docs are going to let this get out of hand .my mother didnt catch the fibers from me from riding in my car .the things are pulling fiber into your skin. before i threw away that birdnest i got pieces of leaves ans twigs or somthing off of me. why cant they just try this and see if it helps. god forbid my mother better not die from this because nobody wants to take some time to listen to my story for 5 min.for god sake and i hope not but you may pass me on the street or someone you love and you are doomed and i wouldnt wish this on my worst enemy .but every day is becoming a new person with the symptoms, i think it was where there weather was so dry during the summer.
Hi, Sandra. I’m sorry that you and your mother are ill. Do you have anyone else helping you take care of her? Is your mother very old, or was she in a weakened condition before she became ill with what you both, now, have?
SMILYKINS .NO MY MOTHER WAS IN PERFECT HEALTH UNTIL THIS HAPPENED TO HER . SHE IS 70 YEARS OLD AND WORKED EVERYDAY. NOW SHE IS 30 LBS LIGHTER ,HER HAIR HAS FALLEN OUT,SHE LIMPS AND HER SKIN IS HORRIBLE AND BEEN DIAGNOSED WITH SPOTTED ROCKY MT FEVER AND LYME. WE BOTH HAVE IT.AND THEY TRY TO SAY ITS NOT REAL. WE ARE PRETTY MUCH GETTING OVER OUR SYMPTOMS BUT WE HAD TO BECOME OUR OWN DRS AND HAVE A lot of faith in god or we would have never made it through .NO ,I HAVE NO HELP WITH MY MOTHER ,ITS LIKE ALL OF SUDDEN OUR FAMILY HAS TURNED THERE BACKS .SHE GOT THIS RIDING TO THE DR WITH ME AND THERE SURE ITS NOTHING THAT TRAVELED FROM ONE PERSON TO ANOTHER…..
Sandra, do you know that there are local community assistance numbers in the front of telephone books, as well as online?
Sandra says: “SMILYKINS .NO MY MOTHER WAS IN PERFECT HEALTH UNTIL THIS HAPPENED TO HER . SHE IS 70 YEARS OLD AND WORKED EVERYDAY. NOW SHE IS 30 LBS LIGHTER ,HER HAIR HAS FALLEN OUT,SHE LIMPS AND HER SKIN IS HORRIBLE AND BEEN DIAGNOSED WITH SPOTTED ROCKY MT FEVER AND LYME.
Your mom’s been diagnosed rocky mountain fever and lyme, but it’s the Morgellons that are making her sick?
I am sorry that your mother is in ill health. My mother is older as well and has more ailments than before, but I am not surprised due ot her age. Though she was in perfect health before, I found it to be expected that she would acquire some ailments as she aged.
My mother didnt and I didnt get lyme or rocky mt fever until AFTER the morgellons symptoms begin. so I guess ticks are not the only thing that causes this affliction . I do not mean to get rude ,I am a very nice outgoing person and all my friends know me as this ,what makes me angry is somone thinking we are all crazed with somthing we just want to convince somone with . I wish this would end that way I wouldnt be on this site trying to defend myself all the time. I dont know why this has happened to me ,like a lot of us .the fear of it is I never heard of such a thing going on in all my life until it was my turn to go thru it my biggest fear is that the situation keep going like we are all delutional when that is not the case .some people suffer so bad that some of the comments on here just adds to the frustration, so I apologise for any rudness i may have lashed out .but its spreading rapidly .but I refuse to stay locked indoors , I am going to school ,and still trying to be sombody and I will fight this to the end .
Sandra, I don’t mean to come across as being rude, either. If you were to write things in sequence, maybe I, or someone, could follow what you’ve been trying to say occurred, to you, and to your mother. I think you’d just mentioned, yesterday, that your husband has whatever you both have, too. If you look back at the comments you’ve made, hopefully, you’ll see that things jump around quite a bit. When something is important enough to talk about, surely you realize that it has to be said in a way that it’s understood! Thank you, Smileykins.
Haha nice troll Chris, you make Morgellons sound like the new Aspergers..
Seriously, debate here is groaning under the weight of anecdotal evidence, reductive arguments and misunderstanding of scientific process. The very few arguments that are backed up *with reference to scientific studies* (ie not ‘studies say..’ or ‘my brother has..’) have been plausible and compelling arguments against the existence of Morgellons as a distinct disease. It’s unfortunate that this is construed by others as an insulting attempt to dismiss their symptoms (and sanity?) entirely. No one seems to be dismissing any of the symptoms associated with Morgellons, insofar that most acknowledge that several of the symptoms seem to co-occur.
However, like Aspergers, the danger is one of self-diagnosis. Several comment writers have stated that the writer or their family member had pretty much made up their mind about Morgellons before they even decided to visit a medical professional. Furthermore, the fact that the opinion of a medical professional is dismissed so readily when it doesn’t agree with information read on the internet is a worrying sign.
ps, i herd u liek mudkips?
Move away from the Meth pipe NOW!!!!
anecdotal evidence, reductive arguments and misunderstanding of scientific process.
I keep reading on this site that “any number of conditions” could cause Morgellons symptoms. Could someone please name even one medical condition that causes fibers to erupt from unbroken skin?
I think that the fibers are generally environmental fibers and/or hairs. Nobody has ever show any convincing evidence of fibers “erupting” from unbroken skin – it’s an entirely self-reported symptom.
But you’ve never actually examined anyone with the condition, right? You say Morgellons sufferers are “self-reporting” their symptoms, but you’ve never confirmed it yourself. All you do is deny it is possible. That is what I find ironic about this site. You keep talking about how you represent the scientific view of this phenomenon, but yet the cornerstone of science is observation and examination, the two fundamental things you have never done.
While you might find comfort in saying “it ain’t so,” you’re only convincing yourselves. If your goal is to really convince somebody who is watching these things come out of their bodies, you might actually want to see it for yourself. Then you’d have grounds for expecting people to respect your opinion.
I’m basing it on the evidence presented. Most people with Morgellons claim to have been to 10-20 doctors who have examined them, and told them the fibers are not coming out of their skin. Eventually they find a doctor who will say that they are. However, these doctors refuse to present ANY verifiable evidence that this is happening, and at the same time give their new patients very expensive treatments for a condition that most doctors think is not a distinct disease. Hence the patients do not have their actual conditions treated.
If 20 doctors have examined a patient, then why would it change things if I examined them?
You do not know for a fact that most of the thousands of people who claim to have this disease have been to 10-20 doctors. That is a strawman. It is another example of the irony, which you do not seem to grasp, that you are guilty of exactly what you accuse others of doing. You form conclusions based on bits and pieces you have gathered from the internet, from tv reports, and other eye-witness accounts. You have nothing but anecdotal evidence, from which you pick and choose the elements you present as credible.
Jim, it’s precisely because the evidence is anecdotal that I hold the opinions I do. There is no convincing evidence to suggest Morgellons is a distinct disease – it’s ALL anecdotal.
Even the “thousands of people who claim to have this disease” is suspect – based simply on people who registered at the MRF site, and not actually people who made a claim to have the disease.
The original MRF case definition says:
http://web.archive.org/web/20060926014910/morgellons.org/casedef.html
Anecdotes:
http://www.kcet.org/lifeandtimes/blog/?p=131
http://curezone.com/forums/fm.asp?i=347035
http://www.ipetitions.com/petition/Morgellons_Congress_CDC/signatures-30.html
You can quibble over the numbers – but the central point remains that these people have been examined by several doctors who are far better qualified than I am. Hence it would not change anything for me to examine them.
Your so-called “20 examinations” is the very point that is being debated. So until that debate is resolved you can’t use it as your defense. If those 20 doctors never heard of Morgellons, don’t be surprised none gave that diagnosis. What is being debated is the nature of the examination. These people are calling for that process to be re-evaluated. If an examination consists of people reciting their symptoms and the doctor replies with a memorized diagnosis, does that qualify as a valid examination? It is not unreasonable for people to expect a doctor to examine the physical evidence, and for that examination to consist of more than just a look. Heck, I’d go to a hundred doctors if the ointments and creams from the first 99 didn’t work. There’s nothing wrong with that, Michael.
You’re either missing or avoiding my point completely. You have raised very good points that people who claim to have Morgellons need to respond to. What I find wrong with your site is you do not hold the debunkers to those same standards. When someone says he examined a patient and saw textile fibers, you should question that. These are the anecdotal reports I am referring to, Michael, that you do not hold to the same critical requirements that you do Morgellons claimants. How does the doctor know it was textile? What process did he go through to determine that? Did he send it to the CDC? Did he even look at it under a microscope?
I have noticed it is typical of so-called debunkers to concoct bizarre explanations — anything at all, just so they can say they said some words, to explain things. You say that the fibers coming out of people’s skin are embedded textile fibers. Have you ever tried to insert a piece of lint into your unbroken skin? It’s like pushing a string. You have said on this site that embedded fibers in a person’s skin is common. I challenge you to defend that statement. I personally know that I do not have even one fiber coming out of my skin. I have occasionally gotten a few fiberglass fibers in my skin when working with insulation, but they go away after bathing. But pulling environmental fibers out of skin on a continual basis, even in places such as the inside of one’s mouth where something like that might happen once or twice in a lifetime, on a continual basis?? Is there never a point at which you finally say “Yeah, that’s freaky unlikely. It deserves a thorough investigation.” Frankly, it takes more faith for me to believe that thousands of these people are totally stupid enough not to know what they observe than it does for me to think it is caused by a disease.
You require those who claim Morgellons to jump through very high hoops, but those who support your claim can say anything they want without question.
I don’t think that embedded fibers in the skin is common.
In fact I think it hardly ever happens, and what people are finding is either fibers suck on normal skin (as anyone will find) or fibers stuck in exudate.
I think this because nobody has ever presented evidence of fibers emerging from skin – no photos, no videos, no sections of biopsies.
You can’t present a theory with no evidence, and then ask for evidence from those who question the theory.
I ask you directly, JimT, what is the evidence that backs your theory? Links, references, photos or videos. Any evidence would do. I don’t require you to jump through high hoops – you have set that requirement yourself.
You’ve got to be kidding. There are links, references, photos and videos everywhere. But when you by definition deny their validity by saying they are meaningless because Morgellons cannot exist, there is nothing anyone can do to convince you.
You engage in nothing but armchair analysis, which leads you to wrong conclusions. You say what people are finding is fibers stuck ON normal skin or stuck in exudate. This is a classic example of what I referred to before, that you ignore statements that contradict what you want to believe and accept those that confirm your position. There are copious examples across the internet of people who have fibers coming out of unbroken skin.
I see in your responses you ignore the major points I am trying to make, that you decry the validity of anecdotal evidence when it comes from a Morgellan claimant, but you rely on the same caliber of evidence to form your own conclusions. This is the hallmark of bias.
I’ve said all I have to say on this subject.
No, there are many links of people SAYING they have fibers coming out of their skin – but when they are examined by a dermatologist, the doctor cannot observe what the patient is claiming.
Can you point me to one video or photo on the web that actually shows fibers coming from the skin?
Can you find ONE dermatologist who claims to have seen this happening?
No, all you have are patient accounts, which when examined cannot be verified.
If you remember the inside edition video ,the fibres were coming out like a snake in a basket listening to the flute. To me it looked like static electricity fibres from the air. I not even sure how inside edition was able to get through that and why they would even do a story like that , If that was actually happening the last place you would be was to show it off , you would be quarantined forever if it was like that .My wife has been to a derm. dr. at a major teaching hospital in major city this week. He said to her that he never heard of that desease and that she was wasting his time. The cure for her, was Ziprexa .And it was almost immediate, her family dr. is just not taking any chances that she might have somehting else that is why she is going to different drs. I have never told her what I think about this ,because of the state she is in as with all the other people in situation and I do think it has to be handled tactfully and with some understanding drs. to guide them through the process of elimiation. I find most of these people are trying to be sick instead of listening to dr. and saying there is nothing there, that is the problem with this ,it gets in their mind and takes control ,nothing else excists except this desease ,and gets worse as time goes on ,.On the one website I visit there is a new person (usually a few a week now) and the whole family has it ,they were told it is scabies but they are on the website feeling comfort with the rest of them. I find that these ones with acess to internet are worse off and that this particular person should have the state step in and take kids away before it gets even worse. In the states ,i guess you have to pay for drs. visits as opposed to canada ,maybe that is why it is worse down there as they will surf for answers and go from there.