White Coat Underground

I love my commenters. Some of them are really, really smart. I’d like to share an exchange with you, but first the context.

Morgellons syndrome is a label created by an American woman to describe a group of people who all believe they have mysterious fibers coming out of their skin. I’ve posted a bit on this before, but basically, there is not evidence of a discrete disease entity here, other than, perhaps delusions of parasitosis.

When these fibers and sores are examined by reputable medical authorities, they are invariably bits of environmental fluff, such as clothing fibers. There are a few Morgellons-friendly people who are not experts in fiber analysis, pathology, or medicine (yes, Randy Wymore, I’m talking to you) who claim that these fibers are “like nothing we’ve every seen.” Conveniently, there are no peer-reviewed analyses of these pathology samples.

So in a recent thread (ha!) when Morgellons came up, an interesting exchange took place (you can read the original, but here I’ve extracted the good bits, and simply labeled the commenter as Thinker and Believer).

Believer:

Joint efforts by Oklahoma State University, Center for Health Sciences faculty, and the Tulsa Police Department Forensic Science lab have confirmed that the unusual fibers from the skin of Morgellons sufferers are neither textile nor known environmental contaminants. Forensic microscopic analyses showed that the fibers were not extruded and neither end was sheared, as would have been expected with commercially synthesized textile fibers, nor were they cotton or other naturally occurring plant or animal fibers. FTIR-spectroscopy analyses suggest that the fibers are a relatively pure organic substance but they do not match any known compounds. The vivid blue and red colors of the fibers are not pigments or dyes in any conventional sense, as they are not extractable using various solvents or detergents. Concentrated acid, bleach, and hydrogen peroxide change the colors, suggesting that the colors may be associated with a particular ionized state of atoms in the fibers. The fibers are extremely temperature stable and GC-mass spec resulted in only the release of carbon dioxide. Preliminary SEM elemental analysis suggests the presence of calcium, chromium and silver. Further SEM, spectroscopy, PCR, and other experiments are ongoing.

Sounds very science-y, no?

Thinker:

Does anyone else notice the the disconnect here? It’s an organic compound that’s temperature stable and consist of inorganic materials. And the leading scientist plans to use PCR on a material he’s just determined doesn’t contain any DNA (you get very distinctive patters in the GCMS for organic molecules, while he only sees CO2).
I also like his use of SEM for elemental analysis (most likely he’s using EDS to determine surface chemistry, what you often get as a combined instrument with an SEM).

Thinker:

Yeah, determining at least the elemental composition of an unknown substance is really not that hard, and doesn’t require SEM. People do it in undergrad chemistry labs all the time. There are whole academic departments that do a pretty good job of identifying natural products… maybe they should get some of those experts to have a look if they think these are truly microbe-produced somehow.

Believer:

“Does anyone else notice the the disconnect here? It’s an organic compound that’s temperature stable and consist of inorganic materials.”

Yes, we notice this!!!!! This is nothing like anyone has seen before. Morgellons doesn’t play by the rules.

Me:

Ugh. The “rule” in this case are the basic laws of the universe. Ugh.

Believer:

The basic laws of the universe as it was in the GE-free Era dose not apply any more!

What we have here is “special pleading”. The Believers wish to be exempt from the basic laws of the universe. When challenged on that, they claim that genetic engineering has altered these laws. Of course, genetics follows the same laws as anything else. The fundamental misunderstanding of science is so deep that I’m not sure what can be done to overcome it.

Comments

  1. #1 Joseph Hewitt
    May 13, 2009

    I didn’t think it was a basic law of the universe so much as a simple tautology- we describe a substance as organic if it conforms to the definition. Of course I’m not a chemist so I could be wrong about that.

  2. #2 davidp
    May 13, 2009

    “Forensic microscopic analyses showed that the fibers were not extruded and neither end was sheared, as would have been expected with commercially synthesized textile fibers”
    If the fibres are fragments rubbed off cloth while wearing it, I would expect tapering worn ends. This and the rubbing effects would make them look not extruded.

    Forensic labs look for specific things, e.g. identifiable cloth fibers that will help identify the clothing they came from. Indistinguishable fragments arent useful to their job, so they probably arent in one of the categories the labs report.

  3. #3 Eric Lund
    May 13, 2009

    The last Believer you quoted said:

    The basic laws of the universe as it was in the GE-free Era dose not apply any more!

    Because of the inspired typo the second half of that statement might even be true: his “GE-free Era [sic] dose” clearly no longer works, or he wouldn’t be making this incoherent statement about universal laws. He should talk to his psychiatrist about increasing his dosage or switching his meds.

  4. #4 Jim
    May 13, 2009

    Oh good grief, I think I preferred creationist nuts who flatly don’t believe in science to these royally toasted flakes.

    ….why did I ever Google Morgellons? That’s minutes of life I’ll never get back.

  5. #5 eddie
    May 13, 2009

    HAHAHAHAHA!
    chromatic aberration!
    HAHAHAHAHA!
    scope out of focus!
    HAHAHAHAHA!
    red and blue filaments!
    HAHAHAHAHA!

  6. #6 Jim
    May 13, 2009

    Btw, since reading about Morgellons, I keep finding lint in my navel.

    Do I have Morgellons?

    Arrgghh

  7. #7 eNeMeE
    May 13, 2009

    …thanks.

    Now my brain is too scared to work proper. Thinks it might catch the stupid. *fist shaking* Curse you!

    BLEArghl!

  8. #8 Strider
    May 13, 2009

    I can’t decide which I find funnier: reading Morgellon’s “sufferers” accounts or the epithet “Fuckface”.

  9. #9 Dante Adelman
    May 13, 2009

    Deborah,
    I have a theory that deadly, ubiquitous Springtails (the Collembolans) are using their mass, insect mind to makes humans extinct and they are targeting our children and older persons with their deadly benzene-laden bites and their built in acetemeniphenol. I’m sure you atuned into their mass mind (we’re not exactly the most evolved creatures here on this planet)! You knew you had to fight them even though you didn’t even know they were there (or even existed maybe)! We don’t get taught about them in biology class because the big Pharma and the skin care industries censor our biology texts! The dermatologists and MDs all go along with this cover-up (especially the psychiatrists and dermatologists) because they make so much money from perscribing Acutane, and all those Psychotropics for BI-POLARITY (this used to be called by it’s true name ENDEMIAL DISTEMOER (insect overload of the skin!). In the 90’s Our local dermatoligsts were perscribing accutane to my music students (covered with millions of these insects) and are now what I consider(ed) SUPERCARRIERS! But even more disheartening is when they label ENDEMIAL Distemper wrongly as DELUSIONAL PARASITOSIS! If you don’t believe me, contact Debora at the NPA or talk to an educated microboligist! There is a big disconnect/cover-up between microbiology and big pharma. If you would like to learn how the mass insect mind works and experience this in our own species. You would need to read my paper and do my psudo-time-displacement experiment. All living creatures on this planet have the mass mind ability but over time SATAN has ushered into HUMANS a regressive trait resulting in a shrinking and deepening subconscious access to this very area of our brains! (OUR 666 CLOCKS!)There’s more in my paper if you’re interested, I’ll e-mail it to you!
    Sincerely, Daniel Ade

  10. #10 Strider
    May 13, 2009

    Unless it’s reading some of the comments to your 9 May post…Btw, I’m a real medical doctor whose been self-treating my Morgellons for several doctor’s lifetimes now and I demand you take me seriously as a doctor.
    Strider, MD

  11. #11 Zann16
    May 13, 2009

    Thank goodness we still have a few choices left in this country for now anyway. I think I will check the Yellow Pages for another Internist.

  12. #12 Strider
    May 13, 2009

    Holy crap! Watch just a minute from this video (for some reason only his/her photos are the ones out of focus) and read a few of the comments. Total insanity.
    http://www.youtube.com/watch?v=lhY51JQ2pls&feature=related

  13. #13 llewelly
    May 14, 2009

    Of course, genetics follows the same laws as anything else.

    What!!??? NOOOOO!! But I’ve dedicated my life to genetically engineering sharks to have anti-gravity and warp drive! What’ll I do now?

  14. #14 Bob O'H
    May 14, 2009

    What’ll I do now?

    Go back to the old stand-by of creating mutants with glowing bricks of radioactive material.

    I’ve found that a lilac glow actually works better than the traditional green. I’m having difficulty getting published, though – the referees don’t seem to get that being mad is half the point.

  15. #15 Snoof
    May 14, 2009

    I’m having difficulty getting published, though – the referees don’t seem to get that being mad is half the point.

    Tell me about it. I tried to present a paper the other month. Would you believe they asked me _not_ to laugh maniacally? Blatant anti-Science Related Memetic Disorder sufferer discrimination! Call me mad, will they? I’ll show them!! I’ll show them all!!!!

  16. #16 Trisha Springstead RN, MS, Doctoral Candidate
    May 14, 2009

    Holey Moley, I have now 45,000 families reporting to me now from all over the world. I sure could use a few Phone numbers of Doctors willing to help me with these patients.
    Trisha Springstead
    Stick with Mr Common Sense.

  17. #17 Uncle Glenny
    May 14, 2009

    Without further context, I took “GE-free era” to mean pre-General Electric, i.e. before the takeover by the Military Industrial Complex, Bilderberg Group, Trilateral Commission, etc.

  18. #18 Julie Stahlhut
    May 14, 2009

    Could people be having this problem because they’ve had a very real reaction to something (environmental pollutants, a viral infection, etc.) that causes neurological symptoms? Delusory parasitosis is not anything new, and calling it “delusory” is somewhat patronizing to people who are really suffering with it. The symptoms are real; it’s only the “bugs” that are imaginary. And, if you have a strong sensation that insects are crawling on your skin, or that fibers are embedded in it, you’re going to start looking for insects and fibers.

  19. #19 MSalle
    May 14, 2009

    Many of “us” are people who had active involved accomplished lives, who did many good things for our world. We are now forced to become isolated and private due to the symptoms and ridicule from even the most educated “do no harm” people. I for one am very afraid of the silencing that you are promoting.

  20. #20 Mu
    May 14, 2009

    The problem is NOT that people are getting silenced, the problem is that they (the “doctors”, not the patients)opened their mouth. If you publish something that is only evidence that you have no clue about the science involved, you get ridiculed. There might be something to it, but so far any evidence presented hasn’t held up in the light of an unbiased investigation. The real issue is – there are excellent analytical techniques out there. So it shouldn’t be so damn hard to get a definite answer on what these fibers are if they exist and can be isolated. I mean, we’re talking about something visible to the naked eye, somewhere in the micron plus size range. That’s huge, and there are supposed to be thousands of sufferers, so getting a decent sample should absolutely be no issue. Since the fibers are supposed to grow out of something, it should also be no issue to isolate that, just follow the fiber to the embedded end.
    It’s the fact that the science should be easy but for some reason isn’t that makes people suspicious. Combine that with the usual conspiracy theories and a complete disregard for the laws of nature by some believers, yes, it becomes something of an anathema.

  21. #21 Ranson
    May 14, 2009

    @ #9

    Excellent work! Easily 0.5 Timecubes. It could be a 0.6 with wild formatting and a bit more self-aggrandizment.

  22. #22 rob
    May 14, 2009

    uh oh, strider “demands” that we take him/her seriously!

    resepect strider’s authoritah!!!!

    @llewelly: i have successfully incoporated cybernetic mega-watt lasers in sharks. i call them sharks WFLB. (with frickin’ laser beams). when you get the warp drive and anti-grav working, let’s send them out to explore strange new worlds; to seek out new life and new civilizations; to boldly build wal-marts where no wal-mart has been built before.

  23. #23 Suzanne
    May 14, 2009

    “The fundamental misunderstanding of science is so deep that I’m not sure what can be done to overcome it.”

    I agree with you but short of requiring the entire population to avail themselves of 6 years + of college, there’s nothing to be done. And even if someone was literate in chemistry or microbiology they wouldn’t be literate in another field.

    Speaking from the bottom up (no degree in science), might it be a credibility issue? Does John or Jane Doe generally find scientists credible or can they honestly understand what you’re saying? The woman who named Morgellon’s evidently was not accepting the information given to her on her son’s condition. There’s nothing you can do with a patient like that. Unfortunately there will be others who feel the same and the internet allows them to gather together. When someone holds to a belief so tightly, no amount of scientific argument will convince them. It must be frustrating from your end.

    I have felt the frustration of not being able to get a definitive answer to my health issues and as I’ve stated before, this is what drives people to these extremes. Fortunately I had an internist that I trusted who said to me, “You might need to be OK with never having an answer.” That was a difficult pill to swallow (HA) but acceptance helped me go forward.

    I am disturbed by the tendency to make these people the butt of jokes. They are honestly suffering and if it has a psychological element then the joke is even more distasteful.

    #18 Julie has something interesting to say.

  24. #24 catgirl
    May 14, 2009

    There’s really only way to respond to the believer’s first comment: show me the evidence. If there really is such an extraordinary material, I would love to see the results (and methods) of various testing, regardless of where it came from.

  25. #25 catgirl
    May 14, 2009

    I agree with you but short of requiring the entire population to avail themselves of 6 years + of college, there’s nothing to be done. And even if someone was literate in chemistry or microbiology they wouldn’t be literate in another field.

    Science isn’t really about knowing facts and information. Science is about understanding how to test ideas to most accurately reflect reality. I think that high schools and even elementary schools should do more to teach logic and critical thinking skills. I think that high schools should also have mandatory courses on scientific testing, statistics, and evaluating evidence. Everyone should have a thorough understanding of things like placebo, control, and bias.

  26. #26 Dacks
    May 14, 2009

    “I have felt the frustration of not being able to get a definitive answer to my health issues and as I’ve stated before, this is what drives people to these extremes. Fortunately I had an internist that I trusted who said to me, “You might need to be OK with never having an answer.” That was a difficult pill to swallow (HA) but acceptance helped me go forward.”

    Suzanne, you very clearly show here WHY people do turn to CAM: Many CAM practitioners say, “Hmph! Those doctors don’t know what’s wrong with you?! It’s so obvious. You have unaligned chakras which are pressing on your bowels creating disturbances in your immune system. You must detox immediately! And I have some products here, guaranteed or your money back… Oh, and if you still feel bad after the treatment, it’s just your body’s way of getting you back to health. Don’t worry, and come back in two weeks for your next detox.”

  27. #27 Denice Walter
    May 14, 2009

    Seems that a celebrity is now among the Morgellons community(see Billboard,2/20/09; also jonimitchell.com)

  28. #28 Tsu Dho Nimh
    May 14, 2009

    @18 – Julie, many of those with Morgellon’s are menopausal females, and one of the annoying symptoms for some women can be itchy skin. Drying skin is a feature of growing old for both sexes to the extent that the daily soap and shower may cause dermatitis, and dry skin itches. Combine that with a poor science background, a welcoming group of fellow believers on the internet, and you have a recipe for a shared delusion and self-inflicted dermatatitis.

    One participant on a forum was writing about the Morgellon’s parasites that infested her house. She could see them on her mirror when the light was right, and they would rise up to try to get on her if she brought her hand close. (the combination of house dust and static electricity apparently never occurred to her)

    Others report taking multiple long showers a day, frequent use of harsh chemicals to “kill” the parasites (bleach, alcohol, etc.), smearing themselves with various essential oils (also harsh, and some of them known to cause contact dermatitis), etc. All of that is guaranteed to dry our their skin, maintain skin lesions and cause new ones.

    Some of the cases undoubtedly started out with some sort of dermatitis – I remember one that sounded like an encounter with a plant mite that has itch-causing hairs, one well-known to farmers but not to suburbanites – but the subsequent poor treatment is sustaining the “incurable” myth. I had the urge to sedate them for a couple of weeks, or wrap them in “mummy” bandages, and let them heal … one of my favorite dermatologists had a “let’s stop doing things to your skin” approach that healed a lot of chronic dermatitis problems.

    As a medical technologist, I spent a lot of time looking at things through a microscope … and what I see in the pictures of these “parasites” looks like the usual mix of house dust and carpet lint, skin cell fragments, fibrin threads from under the scabs, dried serum protein … it’s an endless list of things that if you squinch your eyes you can see all sorts of “body parts” in, just like you can see dragons and elephants in clouds.

    I ran my students through a bunch of slides of known non-pathogenic environmental material and common lab artifacts to show them what the usual crap looked like … it sounds like none of these people have ever done that: they start looking at unknowns and of COURSE they can’t identify it because they never took a scraping from a cotton/poly bedsheet or from the carpet.

  29. #29 Nomen Nescio
    May 14, 2009

    When these fibers and sores are examined by reputable medical authorities, they are invariably bits of environmental fluff, such as clothing fibers.

    what surprises me is how seldom, apparently, these fibers turn out to be hair.

  30. #30 Courtney
    May 14, 2009

    As a microbiologist, I would love to join you in criticizing how illogical and far-fetched this whole Morgellons “conspiracy” is. But, as a patient and personal observer of this phenomena, I will have to disagree with the “delusional parisitosis” diagnosis that so many naysayers jump to without ever doing any physical investigation. At this point, it would be more comforting to think that this is purely a psychological issue, because at least that would help explain the sheer lack of adequate medical treatment and the utter disrespect the sufferers receive. What I find extremely frustrating is the fact that it only takes a $100 digital microscope to see that it all can’t possibly be just in our heads. It can be felt by only me (just like everything else), but it can be seen by my mom, by my best friend, by my microbiology professors (who have been completely baffled as to what it could be) and my doctors as well (at least those who are brave enough to look). Luckily there are those of us who are brave enough to open our minds to the possibility that medicine and science are still open frontiers. We may not have all the answers just yet, but I want the suffers out there to know that there are some of us that are not just “believers”- we are scientists- and although it may take much time, money and effort to reach a conclusion, we will.

    Also, since there is so much negativity surrounding this issue, I want to shed some more positive light. Although I have not “cured” myself of this “disease”, I have been able to reduce the symptoms to a point where I now have the energy to live my life, fairly pain-free. I still have to deal with spontaneous eruptions of sores on my face, but my spirit is strong and I am singing a much happier tune. Personally, I was able to restore my health by following the advice of Dr. Hildegarde Staninger. I have had the opportunity to meet some of her research colleagues and have great respect for their dedication and persistence in their attempts to publish. As awful and scary as this whole thing is, it can also be very inspiring. I have been inspired to think outside the box, to go beyond my formal education and venture into the unknown. I will be attending medical school in the fall, and look forward to the day that “Morgellons” leaves that pages of the psychiatric journals and enters into physical acknowledgment, or is that possibility just too perplexing for all you “non-believers”?

  31. #31 Courtney
    May 14, 2009

    As a microbiologist, I would love to join you in criticizing how illogical and far-fetched this whole Morgellons “conspiracy” is. But, as a patient and personal observer of this phenomena, I will have to disagree with the “delusional parisitosis” diagnosis that so many naysayers jump to without ever doing any physical investigation. At this point, it would be more comforting to think that this is purely a psychological issue, because at least that would help explain the sheer lack of adequate medical treatment and the utter disrespect the sufferers receive. What I find extremely frustrating is the fact that it only takes a $100 digital microscope to see that it all can’t possibly be just in our heads. It can be felt by only me (just like everything else), but it can be seen by my mom, by my best friend, by my microbiology professors (who have been completely baffled as to what it could be) and my doctors as well (at least those who are brave enough to look). Luckily there are those of us who are brave enough to open our minds to the possibility that medicine and science are still open frontiers. We may not have all the answers just yet, but I want the suffers out there to know that there are some of us that are not just “believers”- we are scientists- and although it may take much time, money and effort to reach a conclusion, we will.

    Also, since there is so much negativity surrounding this issue, I want to shed some more positive light. Although I have not “cured” myself of this “disease”, I have been able to reduce the symptoms to a point where I now have the energy to live my life, fairly pain-free. I still have to deal with spontaneous eruptions of sores on my face, but my spirit is strong and I am singing a much happier tune. Personally, I was able to restore my health by following the advice of Dr. Hildegarde Staninger. I have had the opportunity to meet some of her research colleagues and have great respect for their dedication and persistence in their attempts to publish. As awful and scary as this whole thing is, it can also be very inspiring. I have been inspired to think outside the box, to go beyond my formal education and venture into the unknown. I will be attending medical school in the fall, and look forward to the day that “Morgellons” leaves that pages of the psychiatric journals and enters into physical acknowledgment, or is that possibility just too perplexing for all you “non-believers”?

  32. #32 Michael Simpson
    May 14, 2009

    I agree with you but short of requiring the entire population to avail themselves of 6 years + of college, there’s nothing to be done. And even if someone was literate in chemistry or microbiology they wouldn’t be literate in another field.

    I think you’re missing a few points about science. Catgirl’s comment (#25) is appropriate, but I think there’s a larger problem. The issue isn’t so much that you should understand every scientific discipline out there (impossible), or that everyone should at least understand the scientific process (a basic logic that could be applied to business, economics, and a whole host of non-scientific fields). The issue is that so many people are anti-science, which leads to people believing in creationism, homeopathy, Jenny McCarthy, and fibers crawling out of one’s skin.

    I do have a science background in biochemistry (undergraduate and graduate) and medicine. It’s a bit stale in that I haven’t touched a cell culture plate, test tube, or western blot (do they still use western blots?) in a million years give or take a few. But everything I do I analyze scientifically. I hypothesize, test, analyze the results, and conclude. If someone presents anything to me, I read it myself and do the same analysis.

    We should teach everyone the scientific method. then maybe some of this garbage wouldn’t exist.

  33. #33 Jane
    May 14, 2009

    I have morgellons.

    Here is my take on the science. Medical science has become so muscle bound on using particular methods for studying diseases that if something is not observable according to the accepted method, then it doesn’t exist. Specifically, in morgellons, we hear ad nauseam about experts examining the fibers under a microscope and calling them fluff, dander, dust, whatever.

    I suggest that you get Morgellons people to sit showered and naked under the eagle eye of competent observers. First feed them a Coke to get their sugar up, because Morgellons gets active after a sugar fix. Then rub the people’s skin with vinegar or zinc oxide or nothing, and see if you don’t see splinters and lumps emerging from their skin.

    The reason people talk about splinters is that they see them emerging, sometimes from existing lesions and sometimes from unblemished skin. This is not a belief, but an observation. If it is a psychosis, then prove it by doing some real observation at the scene, not at a step removed in a lab somewhere.

    Otherwise, these negations of Morgellons, based on what is already “known” and therefore “must” be right, and whatever challenges current knowledge “must” be wrong is not scientific thinking at all. It is refusal to look at evidence because it “can’t” be true and doesn’t seem strange under a microscope. That is not science. but faith.

    All the talk about parasites or genetic engineering is just people trying to make sense of what is happening to them. But the splinters coming from the skin are observable and researchers should make an effort to observe them.

  34. #34 Suzanne
    May 14, 2009

    I understand what Catgirls is saying. You’re saying that people are anti-science and I’m wondering how that happens. Is an anti-science stance born out of frustration or a lack of trust of things scientific?

    How would you explain the improbability of Morgellon’s to someone of average intelligence and education level? Anyone can feel free to put something together. Since I’m not a scientist I’ll read what you have to say and comment from a layperson’s point of view.

    As far as the scientific method is concerned, how would I analyze results that I don’t understand? My physician can hand me the results of my CBC but they’re meaningless to me without the knowledge of what the numbers mean.

    The most important point in my previous comment is that I had developed a TRUST relationship with my internist. That happened over time and was possible because she took time with me learned to trust me also. If I was concerned about a symptom, she was equally concerned. Trust from both sides.

    In my experience this is less of a possibility between a patient and a specialist. I might see the specialist once or twice on a consult and there was no relationship or basis for trust. My trust in their opinion was therefore an extension of the relationship with my internist. Does this make sense? It was never clear to me if these physicians were actually speaking to each other regarding my case, or were they just reading each other’s reports?

    There’s a very sad irony concerning my physician. She developed symptoms that alarmed her and she consulted her own personal physician who, after testing could not find any serious underlying cause. My physician was not satisfied with the answers she was being given because, as she told her friends, she knew something was terribly wrong.

    She persevered, seeking consultation elsehwere. At some point she was on the receiving end of some condescending behavior, suggestions that she was working too hard, etc.

    In the end it was discovered that she was suffering from an undiagnosed cancer that had progressed to stage IV. Why? Because preliminary test results did not warrant a more aggressive diagnostic technique. She was insisting and her physician was assuring her that everything looked fine. He did not trust her on some level.

    Bottom line – she was dead within the year.

    I often long for “House” to be a reality. I’m kidding, but think about having a real team of doctor’s on your case with dry erase boards and everything!

  35. #35 PalMD
    May 14, 2009

    I don’t buy two things here:

    1) “Real” people are too dumb to get science: I think this is horridly condescending and patently false. Also, that doesn’t mean non-science should be the default for those of average intelligence. That’s just nasty.

    2) “People who don’t get answers are so dumb that they’ll believe anything.” This is only true insofar as we drive them to this. This comment as an illustration: “All the talk about parasites or genetic engineering is just people trying to make sense of what is happening to them. But the splinters coming from the skin are observable and researchers should make an effort to observe them.”

    You see, all it would take is these folks having biopsies sent to path—which is done every day. But they don’t believe the answers, and it’s not because of a conspiracy or because they are idiots—they are not. It’s because there are people out there willing to lie to them.

  36. #36 jane
    May 14, 2009

    PaMD’s post was unclear to me. However,

    No, a biopsy sent to a lab is not sufficient. The researchers need to observe the splinters coming out of the skin. Morgellons skeptics are still claiming that nothing is coming out of the skin, and this is simply wrong. Once we agree that something is coming out of the skin, THEN send it to the lab and try figure out what it is. Maybe it is some kind of newer clothing material like polyester that is able to get inside the skin. If so, does every one have it, but only morgellons people are maybe sensitive to it? Or do only Morgellons people have it. But what is it?

    I doubt it is genetically modified, because I got it in 1986, so unless our wonderful government was doing secret GE tests on our population, 1986 was before ge material was widespread in the environment.

    I suspect a bacteria, because my skin gets slimy when I wash with plain water. I would suspect a fungus, except a black light showed nothing on my skin. OTher possibilities: algae? chemical precipitant? If there are insects, I think there are only a few and are a secondary phenomenon attracted to the splinter thing, like fruit flies to fruit.

  37. #37 catgirl
    May 14, 2009

    I understand what Catgirls is saying. You’re saying that people are anti-science and I’m wondering how that happens. Is an anti-science stance born out of frustration or a lack of trust of things scientific?

    I don’t think people are necessarily anti-science. It’s hard for people to think scientifically because it’s not natural. We are extremely prone to seeing patterns where none exist. We like absolutes. We are prone to logical fallacies. All of us can be swayed by anecdotes and emotions. This is why we need to teach the scientific method. If someone takes a pill and loses weight, we have to be in the habit of thinking, “would she have lost that weight even without that pill?” Even people who know nothing about physiology can learn to evaluate evidence, and it does benefit them in other areas of life too.

    Frustration can also play a big part. It doesn’t help when a doctor is condescending, arrogant, dismissive, or just plain busy. I’ve experienced this in my own life and it can be discouraging. Fortunately I also had some good ones along the way. But having a few (or many) bad doctors just doesn’t mean anything about the effectiveness about of alternative treatments. In fact, even if all of science-based medicine turned out to be a bunch of nonsense, that still would not say anything about the validity of alternative medicine.

  38. #38 jane
    May 14, 2009

    Catgirl is compassionate and sensible, but on her analysis of people’s lack of scientific thought, she ain’t talking about me. I majored in the sociology of knowledge and did post college reading on the sociology of science. I know the scientific method, probably as well as most practicing scientists. I know how to be skeptical and I also know how to be skeptical of skepticism

    Anyway, I see that an increasingly formalism has crept into medical research. The controlled study, which started as a preferred practice, then became the gold standard, and then became the only kind of acceptable research. This is a dangerous narrowing of how we see medical evidence It is sometimes less effective than a “less rigorous” approach. For example, a nice controlled study often uses a marker for wellness instead of wellness itself (the blood pressure went down but the patient died). Or, a study may use a secret placebo, which may not be a placebo at all. Or, a study may choose subjects for a study only if they have no other symptoms, but then the drug studies will be applied to all patients, most of whom have other symptoms. All of these respectable studies can screw up people’s health in the real world. Using clinical observation, might be a more real world check on the sometimes ivory tower abstraction of “gold standard” studies.

    And didn’t the world go off the gold standard as a currency standard after WWII? That was sixty years ago. The metaphor is out of date, even if the gold standard study is really really good. Other kinds of science are not slavishly attached to the gold standard. You can’t study geology or weather or astronomy or ecology or climate with a controlled study. Maybe there are some medical syndromes best studied outside a controlled study also. Chemical senstivities is an example, where one chemical can cause six different symptoms in six different people. Kind of hard to get a correlation between trigger and symptom. Maybe it is time the medical establishment backed off some on the so called gold standard study and worried less about how the hoi polloi just don’t understand.

    In other words, science is not synonymous with the gold standard study. The gold standard study is one particular form of scientific method, and to my mind, way overrated. For one thing, drug companies have learned how to game the gold standard study so they get the results they want. Encouraging other kinds of studies may make them more honest, for a while at least.

  39. #39 catgirl
    May 14, 2009

    I never said that double-blind randomized placebo-controlled trials are the only type of evidence that we can use. There are a lot of different types of evidence, some better than others, and we need to learn how to evaluate each type, and be aware of the benefits and drawbacks of each type. Either way, anecdotes are not data. Yes, we need to take people seriously. But a bunch of condescending doctors says absolutely nothing about the validity of some alternative hypothesis. I am perfectly willing to accept that Morgellens fibers are a product of the human body or of parasites, as soon as I see the evidence showing that.

  40. #40 PalMD
    May 14, 2009

    Jane, i think you misunderstand pathology.

    If something is “coming out of the skin”, just cut out a bigger piece of skin—unless these things magically disappear when you observe them, the pathologist can see the in situ “thing” with the fleshy bits.

  41. #41 Mu
    May 14, 2009

    Trials are for treatments, this is establishing a diagnosis first.
    Everything I’ve read about it sounds like an inorganic fiber embedded in the skin. The fibers are too large for asbestos, but there are plenty of other inorganic fibers out there. No idea why thousands would be exposed to it, but maybe the biological origin hypothesis needs to be tossed, and you can start looking at contamination. There’s nothing as itchy as a good dusting with glass and carbon fiber for example.

  42. #42 jane
    May 14, 2009

    The only fact I am unwilling to toss is that there are black splinters coming out of my skin. There are also a few white thingies like little maggots, about 1/8 inch long. As to what they are, I make guesses, but I don’t know, animal vegetable mineral, take your pick, but they are in the skin, and they come out of it, from lesions and also from unblemished skin, and they are not imaginary.

  43. #43 PalMD
    May 14, 2009

    Well, since all that is going on in your skin, and it’s clearly visible, any dermatologist can look at it, photograph it, and biopsy it. It’s very easy.

  44. #44 jane
    May 14, 2009

    A dermatologist looked at a biopsy of one of my splinters which he cut out, under the microscope and said it was just a splinter. No splinter I ever had behaved the way these splinters do. And these splinters appear when you don’t remember getting the splinter. Lots of them.

    So, you need to see the splinters coming out of the skin.

    Meanwhile, this relentless skepticism seems and complacent and ignorant to me. If you want to say you guess to the best of your knowledge that morgellons is just imaginary, okay, but you are just guessing. Postings that claim that people who have the disease are really really nuts or stupid are unscientific and seriously disrespectful. They give a bad name to science.

  45. #45 PalMD
    May 14, 2009

    So a professional, who sees skin all day long, looked at your splinter and found it to be a splinter. You looked at it, experienced it, etc, and don’t believe them. Really, it’s terribly easy to verify. But why shouldn’t it be a splinter?

    It has nothing to do with “being nuts” or not…it’s really a trivial task to identify clearly visible “stuff” in the skin. We do it every day.

  46. #46 jane
    May 14, 2009

    Sometimes docotors get it wrong. It is all the other stuff that goes with the splinters, the tickles, pricking, itching, brain fog, sores that don’t heal, and watching the damn things move around.

    No, I didn’t believe him. I learned to treat it myself, with diet, vinegar (god bless vinegar) vitamins, hygiene. These days, I still have some splinters, but little tickling or prickling and just occasional itching.

    You wonder why people go alternative. There is no alternative, because conventional doctors are on a different channel and can’t hear or help. We’re supposed to wait around until the “scientific” doctors give us permission to have a problem? Hey, it is way beyond that now. I have more or less solved the problem, at least for me. It is not totally healed, but is a nuisance rather than a horror, which it was.

    He that hath ears let him hear.

  47. #47 PalMD
    May 14, 2009

    Of course you are correct: a doctor can always get it wrong. But are ALL the doctors getting it wrong?

    At some point, if you are the only one with the belief, and all the experts disagree, you are less likely to be considered a stunningly revolutionary maverick, and be considered something rather different.

  48. #48 jane
    May 14, 2009

    The whole point of this post is that thousands of people are complaining about morgellons and splinters, and all are challenging the doctors, not just me. Yes, all the doctors can be wrong, because they all have been taught to believe in psychosomatic theory and delusionary parasitosis. It is a systemic ignorance, not an individual ignorance. those doctors whose experience leads them to believe in the physical nature morgellons are in a very precarious position, because if they speak out they risk their reputation. So, all doctors may not be skeptical about morgellons.

    One of the great things this illness did for me was to give me the courage of my own experience. I have experience you have not had. I know these splinters are unprecedented, or at least undocumented by standard medicine. I have become the expert. You guys do your best, but your teaching sometimes blinds you as well as enlightens you. In the case or morgellons, your intellectual filters disserve you and your patients. I say again, you can guess, but you don’t know. I know there are splinters coming out of me. I don’t know what they are, but I know by trial and error how they function, what increases them and what decreases them, and I have made my life relatively comfortable.

  49. #49 PalMD
    May 14, 2009

    I’d have to agree that “systemic ignorance” is a potential phenomenon…but i doubt it in this case. You see, you are positing something that is not so (a “straw man” argument). I’m certain you believe the argument and are not being deceptive, but it’s still important to recognize, viz:

    “…they all have been taught to believe in psychosomatic theory and delusionary parasitosis…”

    This is a non sequitur at best. I have not doubt that so-called somatization and delusions exist, but their existence does not cause me to ignore the existence of other facts. If these mystery fibers exist—and according to many sufferers they do—then it should be no problem to check them out. It requires no “paradigm shift”, no radical change in thinking. Res ipsa loquitur.

  50. #50 Lorie Kramer
    May 14, 2009

    The term Morgellons refers to a condition that was originally perceived to manifest primarily as an
    anomalous skin condition. The visible symptoms commonly include skin lesions that resist healing and
    the presence of unusual filaments that emanate from sores and the skin in general. Many individuals
    that demonstrate visible physical symptoms have been diagnosed as being delusional even though the
    physical effect upon the body is evident and the samples can be subjected to detailed examination.

    More recent research strongly indicates the underlying symptoms are much deeper and more broadly
    distributed than has been realized, and that blood borne vectors may be a common denominator amongst
    affected individuals. Any reference to supposed “delusional parasitosis” in light of the
    physical examinations and documentation available appears to be a gross miscarriage and misdirection
    of effort. The more advanced or severe cases may introduce some psychological complexities to the
    issue in addition to the physical manifestations, but the data is insufficient at this point.
    Erythrocyte (red blood cell) degradation and variation appears to occur in proportion to the
    severity of the condition. Furthermore, various erythrocyte modifications detected indicate that
    stem cell research should be incorporated within the investigation of the condition.

    A certain level of progress has been achieved in the culturing of biological samples and the early
    stages of inhibition study are in progress. Additional research indicates strong correlation and
    similarity of form between certain environmental and biological samples.

    The presence of skin anomalies as the primary criterion for determining the existence of the
    condition appears to be especially deficient, and it is recommended that blood borne conditions
    amongst the general population be investigated in addition to any skin manifestation in the minority
    of the population. The existence of the condition is now acknowledged by the Centers for Disease
    Control, the National Institutes of Health and the Mayo Clinic.

    Clifford E Carnicom, President
    Carnicom Institute

  51. #51 PalMD
    May 14, 2009

    I’m not sure a poorly-formatted copy/paste drive by contributes to the discussion…

  52. #52 PalMD
    May 14, 2009

    OTOH, from her website:

    Lorie has been researching and reporting on illegal aerosol operations since 1998. She was one of the co-founders of the Yahoo Group Chem Trail Tracking USA in 1999 which is still in existence today, and was active in the grass roots group CACTUS. She has worked with Clifford for many years and attended both protests held in Ohio in front of the governor’s mansion and Wright Patterson Air Force Base. Lorie was one of the attendees at the First Annual Morgellons Disease Medical Research Conference in Austin, TX, March 2008.

    Once again, res ipsa loquitur.

  53. #53 daedalus2u
    May 14, 2009

    I have a write-up where I discuss the symptoms that are called by some Morgellons, and I think they can all be explained by low nitric oxide in the skin.

    http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

    I consider it to be hallucinatory rather than delusional, that is the symptoms are all completely real, the brain is just such a good pattern recognizing device that it integrates those symptoms together and comes up with the idea of parasites in the skin.

    I think the reason the brain does that is because it is better to scratch an itch that is not a parasite a hundred times than to miss scratching an itch that is a parasite a single time. Evolution has configured the “parasite detection module” to make as few false negatives as possible, which means that it will make plenty of false positives.

    Low NO makes the mast cells in the skin hypersensitive; when those mast cells get triggered they generate ROS which makes adjacent mast cells hyper-hypersensitive, so sensitive that they degranulate all by themselves. When there is a propagating wave of mast cell degranulation in the skin, which is perceived as motion in the skin, it is perceived as a parasite crawling in the skin.

    When low NO makes the mast cells hyper-hypersensitive, then the parasite detection module is skewed even farther out of whack. It may be ok to scratch a non-parasite a hundred times, it is not ok to scratch it a thousand or ten thousand or a hundred thousand times. Then the skin gets a hole worn in it and it gets infected and doesn’t heal.

    The usual treatments to deal with skin cooties, alcohol, soap, washing, scrubbing, insecticides, etc all have the effect of lowering NO levels still more.

    Menopause is a time of reduced NO availability. When the estrogen receptor is activated, it generates NO. That is the reason that pre-menopausal women have reduced incidence of heart disease, the NO from estrogen increases their basal level and makes them more resistant to low NO effects. Another disorder that occurs in menopausal women is primary biliary cirrhosis. It also has the major symptom of itching in the skin. I think for the same reason. Low NO in the skin.

  54. #54 ebohlman
    May 15, 2009

    Jane:

    First feed them a Coke to get their sugar up

    Contrary to popular belief, consuming sugar doesn’t raise your blood sugar (assuming you’re not in a hypoglycemic state) unless you’re diabetic or heading there.

    Sometimes docotors get it wrong. It is all the other stuff that goes with the splinters, the tickles, pricking, itching, brain fog, sores that don’t heal, and watching the damn things move around.

    With the exception of “watching the damn things move around” all of those are classic symptoms of undiagnosed and/or poorly-controlled diabetes. Have you been tested for it? If not, get it done NOW. It’s not something you want to mess with.

  55. #55 Inquisitive Raven
    May 15, 2009

    I have to wonder if what we’re seeing is some kind of tactile hypersensitivity. I have no air conditioning, and it gets hot where I live, so when I’m at home, I frequently ditch my clothing, and I live with two cats. I’ve discovered that having cat hair stuck to sweaty skin can itch abominably. When those little buggers shed, the fur gets everywhere. I’ve also been poked in the leg by a dropped vibrissa. The bulb end of one of those things is surprisingly sharp, and stiff.

    I can well imagine that someone less good at identifying cat hair, and worse, allergic to cat dander, might come to an erroneous conclusion about the “fibers” stuck to their skin. Someone who’s got general tactile hypersensitivity might well have similar issues with textile fibers.

  56. #56 JohnV
    May 15, 2009

    Jane, not to feed your possible conspiracy theory leanings, but the first gene was cloned in 1973, so don’t let chronology steer you away from blaming government genetic engineering experiments.

  57. #57 Andrew
    May 15, 2009

    I always enjoy seeing some of the pro / con arguments on morgellons displayed.

    Morgellons seem to be a case were a community of sufferers has pushed an issue into research, which is good.

    Some research intitutes can be found here:
    http://morgellons-cure.com/

    Best,
    Andrew

  58. #58 henry
    May 17, 2009

    just a suggestion to jane:

    spend $100 on a video camera, zoom in, and take a film of the splinters emerging. if what you are saying is all true, there is nothing preventing you from proving to the medical community that they are wrong.

    That’s the beautiful thing about the scientific method. All it would take is a single Morgellon’s patient to take the initiative and gather some credible evidence. you claim to be scientifically minded, and you also claim that you know the scientific method better than most scientists.. it should be a no brainer to you. Get the evidence, prove them wrong. Then next week you can come back and gloat to us all, because you know damn well that nobody on this forum would dismiss Morgellon’s if some evidence was presented for its existence.

    Plus, you could make a big name for yourself, possibly some coin, possibly an honorary doctorate, etc. by doing so. In short, if what your saying is all true it would be a trivial exercise to change all of our minds. I suggest you give it a try.

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