Morgellons – it’s complicated

Will Storr has a long-read piece out on Morgellons disease featuring insight into those with the condition (that officially doesn’t exist), with doctors, and with skeptics. While I don’t agree with his characterization of skeptics in most cases, there is much of interest to be found in this story.

The itch nobody can scratch — Matter — Medium.

Paul is referring to the pathology that clinicians and Skeptics alike claim is actually at the root of Morgellons. They say that what people like him are really suffering from is a form of psychosis called delusions of parasitosis, or DOP. He is, in other words, crazy.

It is a view typified by academics such as Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio, who has created a special presentation devoted to debunking Morgellons that he regularly presents to doctors and who told the Washington Post, “Any fibers that I have ever been presented with by one of my patients have always been textile fibers.”

People at a Morgellons conference are undoubtedly affected mentally by their condition, whatever it is. It affects their careers and their families, their entire lives. Examined is the options that it could be from mites, from a chronic itch condition, from a mental condition. People report the fibers move, that they may be nematodes or nanotechnology gone wrong. There is no evidence for that. But there is evidence that if we seek fibers on our skin, they ARE all over.

No mention is made of allergies but there is a connection made between an undiagnosed condition that leads to uncontrollable itching and then people finding normal fibers on their skin and mistakenly connecting the two.

Typical fibers found in our environment from fabrics, hair, carpet, etc.

Typical fibers found in our environment from fabrics, hair, carpet, etc.

Morgellons proponents have resorted to claims of coverups and conspiracies, a clear indication of trying to keep the idea afloat where no evidence is forthcoming. Could it be that everyone is looking in the wrong places? Perhaps. What I do like about the piece, although it sometimes goes off track, is the emphasis that life conditions are complicated, not black and white. The answers for Morgellons suffers may be difficult and complicated. Not what they wish to hear and not easy to treat. But the conclusion that it is some alien organism infecting us remains completely unsupported.

The CDC based study of Morgellons came out in 2012.

CDC – Unexplained Dermopathy (UD) Study – Background and Summary.

The study itself is published here. PLOS ONE: Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy.

More on the topic:

Skepticblog » Morgellons – Creating a New Disease.

Still more evidence that Morgellons disease is most likely delusional parasitosis, 2012 edition – Respectful Insolence.

Morgellons Watch.

I’d be interested in hearing responses to Storr’s piece. Keep it science-based please! Comments are heavily moderated.

  18 comments for “Morgellons – it’s complicated

  1. March 12, 2014 at 9:09 AM

    The problem is not that morgellons does not exist, it’s that science already knows it under a different name, and the (usually self-diagnosed) patient community simply don’t like it.

    We’ve been here before. Science has a full, coherent, internally and externally consistent explanation for the effects observed with homeopathy. Homeopathists do not: their explanations are incoherent, inconsistent and involve numerous ad-hoc hypotheses. But they don’t like the scientific understanding, so they resist it tenaciously.

    Most people with “morgellons” have delusional parasitosis or a skin inflammation. The fibres they find are from fabrics. A few have actual infestations, but none of them have a new disease caused by fibres growing in lesions on the skin.

  2. Jon O
    March 12, 2014 at 12:43 PM

    After investigation by the CDC, there is almost total agreement among scientists that in independant etiology for Morgellons does not exist. Purported cases can be diagnosed as already well known disease and conditions, principally delusory parasitosis.

    In my line of work, I deal with victims of delusory parasitosis fairly often. It can afflict otherwise mentally healthy people, particularly the middle-aged and elderly. DP and skin irritation are part of a feedback cycle because DP causes excessive cleaning behavior such as multiple showers per day and sometimes exposure of skin to chemicals such as bleach, solvents, or insecticides. The resulting irritation convinces the sufferer that their infestation is growing worse. Physician/parasitologist John Carlson describes the condition very well (and compassionately) in a post from Bugguide.net:

    Illusions of parasitosis
    Many of the lesions that you are describing are not related to arthropods. Your immune system may be tricking you. There is an intense connection between the immune system and the brain that we do not fully understand, but when your immune system is concerned about something, it changes the way you perceive things. For example, if you have an infection and don’t rest, your immune system deliberately makes you feel miserable to force you to rest. It isn’t technically the infection that makes you feel run-down and exhausted- it is your immune system acting on your brain. When your immune system is worried about a parasite on your skin, it makes you itch- the only purpose of which is to make you scratch. Scratching is a very complex behavior if you think about it, and the fact that your immune system can make you do that behavior is amazing. If the immune system/brain is worried it can increase your perceptions of normal sensations to an alarming degree. At any moment everyone has some part of their body that feels a small amount of itch, pain, heat, cold, movement, and all of the other possible skin perceptions. Most of those signals are ignored because they aren’t important enough. Small tears in the skin can make itch, blocked sweat glands can cause a sting, and accumulated sweat can make a crawling sensation. Your subconscious mind is constantly interpreting all of these sensations. You can turn up those perceptions pretty easily so that you are “over-sensing” itch, pain, movement, or all of these. (If you over-perceive all of them at once, it is called formication, named after the sensation of an ant (Family Formicidae) crawling on the skin and biting and stinging you.)

    I think that some of what you are experiencing is over-sensing. The sensations and small bumps are real, but part of small, normal problems that get dealt with all the time without you realizing it. The question remains, what caused your immune system to be so worried in the first place? One cause is an actual problem with parasites (e.g. mosquitoes) that has ended even though the worry persists. The worry is subconscious, and leads to over-perception of itch and other sensations, that leads to scratching or picking. I believe that people have a built-in subconscious worry about parasites that can be triggered easily. When I talk to people about head lice, most of the audience members start scratching their heads. It is as contagious as yawning. When one person in a family begins over-sensing, other family members and close friends usually start to do it too. Everyone is on the look-out for sensations that might be a bite. And once you start trying to feel them, it is easy to drive yourself crazy thinking that you’ve just felt something. You are always feeling something, but normally you don’t dwell on it long enough to remember. Now, your subconscious mind is so concerned that it suspects everything you feel is caused by a parasite.

    This falls into the category of an illusion: the subconscious mind interprets a piece of information incorrectly. The itch or sting sensation is real enough, but it is a normal sensation that is over-perceived and then incorrectly interpreted as a parasite by the subconscious mind. Illusions are fun when you can walk away from them at a magic show, but for people that live with them, they can be difficult to deal with. Over time, some people cross over from having illusions that they can try to ignore to having delusions, where the mind’s interpretation becomes fixed. When specifically dealing with parasites, this is called “delusions of parasitosis.”

    How do you calm down this problem of over-sensing? Unfortunately, I don’t know. In the hopes that information helps, you should know that for what you are describing, only itchy bumps are likely to be caused by actual arthropods- everything else is likely over-sensing. The most common of itchy bumps is mosquitoes. For many species the bite is not perceived until after the mosquito has flown away. People worry about mites because they don’t want to be “infested.” Again, there is something deep in the subconscious that seems to be very wary of this kind of parasitosis. In fact, this seems to be the most common worry with people who have delusions of parasitosis, and because of this, they are often treated for common infestations such as scabies and lice. People with the delusions often try to dig out parasites from places that they feel a sensation using their fingernails. They may resort to increasingly toxic treatments trying to kill off the insects that they think must be causing the sensations. It’s a miserable disease, and the patients often feel abandoned because doctors and entomologists can’t figure out what is causing the problem.

    Real mite bites and infestations are intensely itchy, and the patterns don’t match with what you have. Most people that do have lice or scabies don’t complain of being bitten or infested- and this is probably an adaptation of those few species that allows them to parasitize us. Very few species are capable of infesting people because in order to do so, they have to over-come our intense immune system that can manipulate the brain into actions that will remove them. This may be why bed bugs take a series of small meals (resulting in the line of itchy bumps); they may need to keep moving in order to escape the lethal scratching that we can do in our sleep. It is so much easier to be a mosquito that can fly in, quickly consume its fill of blood, and then fly away before the immune system knows that there is a problem to deal with.

    As a parasitologist, I would be grateful to know if you figure out how to calm the over-sensing that comes after an unexplained series of bites that you and your family are dealing with. In my field, it is a fairly common problem.
    … John Carlson, 9 May, 2009 – 11:30pm
    http://bugguide.net/node/view/273661#417279

    • Lagaya1
      March 12, 2014 at 2:16 PM

      Jon O – loved this explanation!

      I was going to add that people who pull a fiber off their skin are likely getting really close to look at it, breathing on it, and that’s why they see it moving.

  3. spookyparadigm
    March 12, 2014 at 6:36 PM

    So, what exactly is the name for the literary ecological niche of the well-heeled and sophisticated kook explorer, who writes a humanizing long-form journalistic piece on people with alternative beliefs, giving some credence to them for the attention, before then settling in on a light and non-authoritative debunking as well as a blended critique of the bland mainstream of science and scholarship and the ills of society that produce these alternative beliefs, all for the enjoyment of serious middle-brow Bo-Bos?

    We seem to get one of these about once a decade, as reviews comparing him to Ronson and Theroux before that suggest. That all three are British is intriguing. It makes me wonder if this is sort of the ultra-sophisticated end of the Fortean spectrum, and here I mean Fortean in the British sense of not committing to literal paranormal explanations, keeping the social explanations open, but still using the opportunity to critique more mainstream class-peers in the professional fields.

    And yes Sharon, I think that is science-based. Well, perhaps not science. But just as we are comfortable discussing different approaches to the paranormal in different cultural contexts (South American UFO accounts with their violent aliens and robots vs. North American abducting grays vs. European Nordics and little goblins), we should be open to discussing differences in non-“believer” approaches to the paranormal as well. I take this up a little bit in an article I’m waiting for review on, where I suggest that pseudoarchaeology (and responses to it) as a concept doesn’t work as well in Latin America as it does in Anglo-America, and that there are other flavor differences in different European societies. This doesn’t mean there aren’t weird beliefs in each place, nor that there are professionals grappling with such popular beliefs. But it does mean that the frame they get can be quite different from place to place.

    I suspect I’m too American in my response to this. I don’t want tantalizing mystery comfortably couched in upper middle class sophistication and security. When it comes to what is physically going on, tell me what actual investigation has found. When it comes to what is going on socially, then address that with a more solid ethnographic or sociological investigation. In either case, I’d like to get a feel for what is happening, so I can move on to what’s next.

    • March 13, 2014 at 9:02 AM

      I have not sussed out what Storrs is all about. I just know that I cringe at some stuff and nod at others. That’s become more of my general reaction to everything. So, I think it’s about right.

    • Laura G.
      April 29, 2014 at 5:10 PM

      Thank you.

  4. March 13, 2014 at 9:00 AM

    To those of you telling me I’m an idiot or complaining how your contra-comments are not being posted, read the Comment Policy. This is a science-based site, not your platform for unsubstantiated claims.
    http://doubtfulnews.com/rules-for-commenting/

    Also, it’s interesting that even though I admit something is amiss with people suffering this condition, it’s revealing that only because I don’t see things EXACTLY THEIR WAY but admit it’s more complicated, they attack me. They reveal their extreme ideology and irrationality by doing that. I wasn’t your enemy here.

  5. March 13, 2014 at 10:25 AM

    I reiterate. This is not a forum. It is a news critique page. Go start your own blog.

    We moderate in accordance with staying true to the goals of the site, that is, it is science-based. So, if you are simply against the tested, established scientific consensus on a topic, you face a high hurdle. Damage control comments will likely NOT be approved.

    • Anne Scofield
      March 13, 2014 at 10:31 AM

      My point is that I am NOT “simply against the tested, established scientific consensus” on this topic, but am attempting to illustrate that there is another consensus, also tested via established, scientific means.

      • March 13, 2014 at 11:34 AM

        What is the “tested via established, scientific means” you refer to? I do not see any such “consensus”. There is alternative view for sure but where are the peer reviewed reports, where is the basis for it? If any other reasonable possibility comes up for this situation, I would gladly talk about it. However, there has been conjecture, speculation, conspiracy mongering and attacks. The quality of discussion (that I have pushed to the trash) has been abysmally low. It gives me the impression that proponents of the alternative position are bullies who are trying to get their voice where ever they can. That will not be helpful at all.

        • anne scofield
          March 13, 2014 at 11:45 AM

          Did you not see the links I included in one of my previous posts? [Ed note: No, multiple link posts are seen as spam]

          And those to whom you refer are not bullies, but actual Morgellons sufferers, some of whom are practicing medical professionals themselves.

          Included for your reference, please see below.

          http://f1000.com/prime/716597867

          http://www.dovepress.com/characterization-and-evolution-of-dermal-filaments-from-patients-with–peer-reviewed-article-CCID

          http://f1000research.com/articles/2-25/v1

          http://f1000research.com/articles/2-118/v1

          If you are unable to view the information linked, please let me know and I will go so far as to email direct.

          • March 13, 2014 at 11:59 AM

            A few papers is not a consensus.

            One alternate view – referenced in the papers – is that it is an infectious disease. Even though a few papers have been published, as above, they have been proposed by those that are advocates of Lyme disease, for example. The conclusions they make have not been substantiated by evidence or by those independent of these advocacy groups. The scientific consensus is, as I said in the post above, complicated and may be multifaceted. But it is not, right now, considered infectious. Only additional and better evidence will foster a change in thinking about this.

            If anyone has a professional opinion and access to these papers, please provide comments.

          • Jon O
            March 13, 2014 at 2:36 PM

            F1000 is not peer reviewed as stated on their main page: “All articles, including research findings, analyses of scientific developments, opinions, and comments are published immediately, following a quick internal check for obvious inappropriateness.” This is a pay-to-publish “journal”, effectively invalidating those articles. If these articles were peer reviewed, the authors would definitely get dinged for self plagiarism: reuse of figures between articles.

            If I were reviewing the dovepress article, I would need to see good immunological staining of the “spirochetes”, with a spirochete-specific primary antibody. Even so, this would be a hard sell until someone could culture the bacteria in vitro and show that it isn’t Borrelia burgdorferi.

            • March 14, 2014 at 2:23 AM

              If you read the paper suggested above you will see that immuno fluorescent staining has been done. How else could the authors have known they had Borrelia burgdorferi instead of another spirochete? http://cdn.f1000r.com.s3.amazonaws.com/manuscripts/304/961a3f1d-9b33-4fd6-a9c4-598598118f73_2-25.pdf

              Look at the PDF version specifically page 4, 5, 6…
              I think you’ll see what you’re looking for. Seriously, without IFS, how would the authors be sure they had Borrelia ? I think with find that they’ve been able to culture Bb from the skin as well then confirming it with both IFS and PCR.

              • Jon O
                March 14, 2014 at 9:19 AM

                The paper you’ve linked here is a step higher in quality above those listed above. The staining looks okay, but not as convincing as it would need to be to get into a regular journal. Also, why didn’t they sequence the pcr product to demonstrate that they have B. burgdorferi, rather than a different species of Borrelia? And show if there is a strain difference.

                It seems they are arguing that Morgellons is a dermatological symptom of Lyme disease, or am I misinterpreting this? This seems like a much more reasonable stance than that demonstrated on many Morgellons websites. When self-appointed spokespeople exhibit obvious delusory parasitosis indicators, as can be seen in all the purported microscopic videos of Morgellons I’ve seen, it tends to overshadow those making reasonable arguments.

  6. April 26, 2014 at 8:24 PM

    In all of the facets of Morgellons Disease, one wonders who in truth needs the label of “delusional”. In “Morgellons Disease, Illuminating an Undefined Illness: a Case Series” (Harvey, et al 2009- http://www.ncbi.nlm.nih.gov/pubmed/19830222), ALL patients were found to have- high resting heart rates, low body temperatures, high rates of endocrine disorders, high miscarriage rates; in other words, this is clearly a set of physiological symptoms associated with other horrific symptoms (fibers from skin, crawling sensations, chronic fatigue, etc.). My experience in recovery from the symptoms set and follow-up research suggests a link to mercury exposure (published in the peer-reviewed medical journal Explore!). The CDC report- http://www.ncbi.nlm.nih.gov/pubmed/22295070 – has a map of a possible concentration of sufferers in the lower Guadalupe River watershed (directly below the largest mercury mines to ever exist in the US). While I appreciate the Holman Foundation’s finding of a link between Morgellons and Lyme Disease, I wonder when they will discuss the know connection between borrelia populations and mercury within the body.

  7. May 3, 2014 at 10:44 AM

    Pro tip to any commenters here. READ THE COMMENT POLICY! We do not allow for name calling. If you do your comment will NOT be published.

  8. Amy Meraz
    June 2, 2014 at 11:51 PM

    Just a few observations: The CDC does not have facilities to conduct studies, so the it was assigned to an HMO. What is the bottom line for an HMO? look into that KaiserPermanent was the one in charge of the study. Not all the people suffering for the disease or condition believe that it is Alien or something like that. There is a humongous number of fungi that still unknown. See Arturo Casadevall’s interview on NPR. Some of the difficult behavior on the people suffering this is due to lack of sleep. Some are still functioning and are afraid to speak up because they do not want to be labeled with a mental illness. If there is not a serious study or anybody willing to take seriously, when we are going to find out if there is something that put all at risk? I suspect that whoever finally find proofs might even win a Nobel prize,

Comments are closed.