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Still more evidence that Morgellons disease is most likely delusional parasitosis, 2012 edition

It’s been nearly a year since I last discussed a most unusual malady. Part of the reason is that the opportunity to discuss it hasn’t occurred recently; usually I need some spark or incident to “inspire” me to write about something, and there just hasn’t been any Morgellons news that’s caught my eye since then. However, another part of the reason, I must admit, is that writing about this particular condition almost always brings sufferers out of the woodwork, castigating me the way antivaccinationists like to castigate me for challenging the scientific basis of their preferred pseudoscience. I catch enough hostility from the antivaccine contingent. Before I’m reading to leap into a fray that’s likely to bring more hostility–who knows? I might even be graced by a visit from a certain particularly deluded and persistent advocate of this condition–my way from an entirely different contingent of woo-meisters. On the other hand, sometimes I need a change of pace, a new area to look at the application of science-based medicine to health and disease.

I’m referring, of course, to Morgellons disease. To recap (for those of you who are familiar with the condition) or to provide some background (for those of you who are not), people suffering (or claiming to suffer) from this condition complain of an intense itching, and the condition is characterized by a number of primary symptoms. These include:

  • Sponanteously Erupting Skin lesions
  • Sensation of crawling, biting on and under the skin
  • Appearance of blue, black or red fibers and granules beneath and/or extruding from the skin
  • Fatigue
  • Short-term memory loss
  • Attention Deficit, Bipolar or Obsessive-Compulsive disorders
  • Impaired thought processing (brain fog)
  • Depression and feelings of isolation


Of course, as I pointed out before, the fibers and granules found in the skin in Morgellons sufferers are always consistent with clothing or scratching. More precisely, no Morgellons advocate has ever demonstrated them to be anything mysterious or even anything not consistent with fibers from clothing or various materials the sufferer comes into contact with. It’s not for nothing that most objective investigations of Morgellons disease conclude that it is some form of delusional parasitosis. Before I move on, let me get one thing straight. Just because I don’t think that Morgellons is due to parasites doesn’t mean that I think that sufferers from Morgellons disease are crazy or “making it up” somehow. In fact, they are suffering. We don’t know why they are suffering, but we can say that it isn’t due to parasites and that the fibers that they on or in their skin are consistent with textiles, such as clothing, and superficial skin injuries due to scratching. Yet there is a large contingent of Morgellons quacks out there who are only too happy to indulge this delusional parasitosis and provide all manner of dubious remedies designed to relieve the symptoms of Morgellons sufferers while also relieving them of their cash.

When last I examined a study looking at Morgellons disease, it was a study that did something very, very obvious. Basically, the investigators looked at skin biopsies and patient-provided specimens. Not surprisingly, most commonly, investigators found that they were skin flakes or serum crust, hair, or textile fibers. There were a couple of insects found among the specimens. Consistent with the literature about Morgellons, there was nothing consistent with a diagnosis of parasite infestation. This time around, there appears to be a study that provides even more evidence that Morgellons disease is not a distinct clinical entity. Basically, it’s a new study that was commissioned by Senator Dianne Feinstein to look into the cause of Morgellons disease. The results were just reported:

ATLANTA (AP) — Imagine having the feeling that tiny bugs are crawling on your body, that you have oozing sores and mysterious fibers sprouting from your skin. Sound like a horror movie? Well, at one point several years ago, government doctors were getting up to 20 calls a day from people saying they had such symptoms.

Many of these people were in California and one of that state’s U.S. senators, Dianne Feinstein, asked for a scientific study. In 2008, federal health officials began to study people saying they were affected by this freakish condition called Morgellons.
The study cost nearly $600,000. Its long-awaited results, released Wednesday, conclude that Morgellons exists only in the patients’ minds.

“We found no infectious cause,” said Mark Eberhard, a Centers for Disease Control and Prevention official who was part of the 15-member study team.

This was a much bigger study, and it was published in PLoS One yesterday. Naturally, I couldn’t resist going to the source, as is my wont. So I did. The study comes from investigators from the CDC, Kaiser Permanente, the Joint Pathology Center, the Department of Veterans Affairs, and the Department of Dermatology at the University of Rochester School of Medicine and is entitled Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy.

This particular study consisted of three major components: a cross-sectional survey, clinical evaluations, and histopathological studies. Eligibility for the study was very broad. Basically, all that was necessary was that the subject be a member of Kaiser Permanente, thirteen years or older, and English-speaking. Cases of Morgellons were defined as any member of Kaiser Permanente who reported during the study period (July 1, 2006 and June 30, 2008) reporting “fibers, threads, specks, dots, fuzzballs, granules or other forms of solid material coming out of his/her skin” AND one or both of the following:

  • a skin lesion such as a rash, wound, ulcer, or nodule; OR
  • a disturbing skin symptom such as pruritus, feeling that something is crawling on top of or under the skin, or stinging, biting, or a pins and needles sensation.

From cases who were identified by predetermined criteria of possibly having Morgellons disease, complete medical histories were taken, and clinical examinations performed. Skin samples were taken by 4 mm punch biopsy, and a dermatoscope used to photograph each biopsy site before and after the procedure. These biopsy samples were subjected to–shall we say?–extensive testing. In addition to standard histopathological analysis, skin biopsy specimens were subjected to scanning electron microscopy. Fibers and other samples were also subjected to infrared spectroscopy (IR) to identify molecular characteristics. Blood samples were taken and serological tests performed, and subjects underwent neuropsychiatric testing. A cross-sectional survey was alos taken using an Internet-based tool.

Perhaps the most surprising thing about this study (to me, at least) was how uncommmon Morgellons disease was. Out of nearly three million Kaiser enrollees screened, investigators only found 104 cases, for a prevalence of 3.65 per 100,000. Given the seeming “prevalence” of the disease on the Internet, one would think that it was far more common than that. It is true that this sample, as large as it is, might not be representative. It is, after all, made up of Kaiser Permanente members, which means that they all at least have a form of health insurance. They also all live in California, specifically in the Bay Area. Even so, it is rather revealing that patients complaining of classic Morgellons symptoms are actually fairly uncommon.

It’s also not at all surprising that another major finding of this paper is that, consistent with previous studies, there was no evidence of any consistent set of abnormalities in the skin of subjects complaining of Morgellons symptoms:

Case-patients had a wide range of skin lesions, suggesting that the condition cannot be explained by a single, well-described inflammatory, infectious, or neoplastic disorder. A substantial proportion (40%) of biopsied lesions had histopathologic features compatible with the sequelae of chronic rubbing or excoriation, without evidence of an underlying etiology. The most common histopathologic abnormality was solar elastosis, a degeneration of dermal connective tissue and increased amounts of elastic tissue due to prolonged sun exposure. However, this finding might be expected among a population residing in California and does not necessarily suggest a causal relationship. Histopathologic examination of skin areas with normal appearance were essentially normal, arguing against systemic or subclinical skin abnormalities. Among the differential diagnoses for the skin presentations detected are neurotic excoriations [16], atopic dermatitis, brachioradial pruritis [17], [18], and arthropod bites.

Previous reports of this condition have described the material emerging from the skin being like fibers, hairs or filaments [1], [19], but we found a more heterogeneous description of materials emerging from the skin, with many case-patients describing materials other than fibers including specks, dots, granules, or worms. We found no difference in the sociodemographic, clinical, or histopathologic characteristics of case-patients who did and did not report fibers. The fibers and materials collected from case-patients’ skin were largely consistent with skin fragments or materials such as cotton and were either entrapped in purulent crust or scabs, suggesting the materials were from environmental sources (e.g., clothing) or possibly artifacts introduced at the time of specimen collection and processing.

There was also no evidence of an environmental cause. Also, not surprisingly, subjects complaining of Morgellons symptoms also had a evidence of co-existing neuropsychiatric morbidity. According to this study, nearly 60% of Morgellons cases had evidence of a cognitive impairment that could not be explained by deficits in IQ, while 63% had clinically significant somatic complaints. Depression was more prevalent than in the general population. Despite these findings, the subjects with Morgellons were more or less normal on most of the tests they were subjected to.

Predictably, although this study is still more evidence that there is not clearly definable physical cause of Morgellons disease, the advocates are not backing down. For example, Randy Wymore, an Oklahoma State University pharmacologist who is one of the most famous and reputable mainstream scientist who thinks there might be something to Morgellons disease is already making excuses. Unfortunately, it’s probable that no amount of evidence will convince such people, at least until we find treatments that are effective in alleviating their symptoms. Maybe not even then.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

381 replies on “Still more evidence that Morgellons disease is most likely delusional parasitosis, 2012 edition”

I have just one question: Could the origin of this delusion lie in a problem with the nerve endings in the skin?

I fully acknowledge that there is nothing visibly wrong with the skin, that there is no unusual inflammation or the like. But could it just be that the nerves in the skin send the brain signals that the brain interprets as “Parasites!”? And could one classify that as a delusion?

Because this just reminds me so much of CFS and Fibromyalgia, where all kinds of explanations were put forward for the increased levels of fatigue and pain in the patients, from “false illness believes” to “central sensitization”. After all, in both CFS and Fibromyalgia there was “no clearly definable physical cause” as well.

Well, Kathleen and Alan Light took a look and did gene expression studies, trying to measure the was going on in the body. And what did they find? The level of pain and fatigue in CFS patients is higher than in MS patients. Ups.

(I find it ironic that Alan Light challenged some long held believes how fatigue and pain are sensed by looking into a disease like CFS that was believed to be psychosomatic by many… http://youtu.be/8yi_mCidr9I?t=18m20s )

And Stephen Straus too found evidence that CFS is a psychiatric problem. Or should I say “evidence”. Small sample size combined with confirmation bias can wreck havoc on any conclusion in a psychiatric study I guess.

So color me seriously not impressed that psychiatrists find a psychiatric cause.

The combination of unpleasant skin sensations with fatigue, depression and brain fog gives me cause to pause.

Has anyone looked at these patients’ feet or done a neurological workup. Sounds awfully like some of the consequences of Charcot-Marie-Tooth disease (or something in that family). Seeing as CMT is the commonest genetic neurological disorder – not that that makes it common – and creepy crawly itchy sensations occur quite frequently, it’d be worth checking out. If they also have high arched feet with weak ankles and/or weak hands, it’d be the top candidate for further checking.

Tony Mach – if someone thinks they are infested by parasites and there are no actual parasites, wouldn’t that classify as a delusion? Particularly if they’ve been examined, told that they have no parasites, and they still believe it to be true?
Not to say, of course, they don’t have the sensations consistent with something crawling over their bodies which.

This is very interesting stuff!

Suppose Tony M’s hypothesis is right, and there’s some unexplained nerve problem causing the sensation of creepy-crawlies all over.

When your nervous system tells you something is happening in your body, there’s an overwhelming tendency to believe it really is, because 99.99 percent of the time, your nervous system doesn’t lie.

If you have a phantom limb, you can plainly confirm that it’s no longer there; in that case, you’d be deluded if you claimed it was still attached.

But this is much more subtle. You scratch, and desperately look for anything that might be causing this misery. Little dots appear on your skin — that must be it! For us science types, it’s very persuasive when scanning electron microscopy or whatnot tells you it’s nothing out of the ordinary, but a person who has only a vague idea of how these things work may not find this evidence very compelling. Their nervous system is telling them, plain as day, that there are creepy-crawlies under their skin. What do those propeller-heads know?

I’d be depressed, too, if I felt like I had bugs all over me. Eeew!

So, it seems to me that the study showed that Morgellon’s is not due to an actual parisite or other agent they can identify. But that doesn’t seem to me to imply that it is necessarily psychosomatic.

Oh, brother. Now that the big CDC study’s results have been released, the Morgellons “commmunity” will be itching to attack the big government coverup (there have been rumblings about this for quite awhile).

The fibers are really going to fly.

Wonder whether the Morgies (as they call themselves) are already burning up the phone lines to Dianne Feinstein, Hillary Clinton and other politicians who pushed for this big waste of taxpayer dollars, demanding we sink more money into further studies.

Sadly, all this distraction prevents people who are genuinely suffering with these symptoms from getting the help they need.

Adelady: Wow, I knew a girl in college who had what we called “Barbie doll feet”. She could wear high heels with ease, though it was hard to find tennies that fit her; other than that, the condition didn’t seem to be harmful. Now you’re making me wonder how she’s doing, thirty-odd years later.

Why would the government try to cover this up? As a conspiracy theory it is somewhat lacking in proper motivation, unlike, say, 9/11 inside job or moon landing faked.

@Daniel J Andrews – 11

Because it’s caused by vaccines/chemtrails/fluoride/CDC experiments or other conspiracy theory of your choice.

Duh!

I think this study is an excellent example of how much harm the “Morgellon’s” concept does to the people who are suffering from these symptoms. $600K spent, without shedding any light on what the problem actually IS – just putting more nails in the coffin of what we already knew it is NOT.

Wouldn’t it have been better for the sufferers if that money had been spent on studies which actually had a realistic chance of producing some real answers? Instead, limited resources get diverted to studies which are inevitably, and predictably, going to produce negative results.

I never knew this had a name until now! I have been suffering for 4 years. First occurred in Spring 2008, and I thought it was related to a move to a different city (ie: allergies or something in the house air ducts). Well, we have been back in our original city for a year now and I still have symptoms. Things that make it worse for me include caffeine and wearing nylon clothing. Things that make it better…??? For me it is a tiny itchy spot, about the size of a pinprick, on my skin. Sometimes there is a timy bump or a tiny patch of dry skin and sometimes not. The itch usually feel like a tiny insect bite. Maybe it is tiny pores getting plugged and itching? Lots of sores on my leg from scratching, can’t wear shorts because they look so awful. I sometimes get them on my forearms but mostly my legs.

Dangerous Bacon’s link cites Hildegarde Staninger- oh my lord- *Quelle* piece of work! And she has a website and sells products. She may top my list of crazy people who actually manage to earn money in some fashion.

The itching isn’t necessarily the delusion, the insistence that the itching comes from parasites along with the conspiracy nonsense is what makes it a delusion.

My wife was suffering from something similar: insane itching and burning and “creepy-crawly” sensations. She’d scratch holes in her arms in her sleep, and wake up to find them full of fibers and what-not. Because my wife isn’t prone to delusion or conspiracy theories, and because she understands that “neurological” doesn’t mean “you’re crazy”, she looked into it and found a nerve-ending thingy that had similar symptoms to what she was experiencing. Her doctor agreed, and a generic pill taken once a day has eliminated the problem entirely.

Of course, if you’re convinced you’ve got bugs under your skin, you’re probably going to be unwilling to take a “nerve pill” aren’t you?

Not that I would disagree, but do you really mean to say you think they’re crazy in the paragraph below the listing of symptoms?
And I’m not surprised by the low incident numbers, 3.65 per 100,000 still gives you about 10,000 potential internet advocates in the US alone. That’s a lot of noise makers.

Basically, all that was necessary was that the subject be a member of Kaiser Permanente, thirteen years or older, and English-speaking. Cases of Morgellons were defined as any member of Kaiser Permanente who reported during the study period (July 1, 2006 and June 30, 2008) reporting “fibers, threads, specks, dots, fuzzballs, granules or other forms of solid material coming out of his/her skin” AND one or both of the following:

Why didn’t they just enroll anyone who claims to be suffering from Morgellons? It would have been simpler, and would give people less excuse to claim that the subjects weren’t real Morgellons sufferers.

adelady, you’re right that CMT might sometimes sound like a form of delusional parasitosis. I have CMT and really bad allergies, any yes, there are plenty of itching and odd sensations involved. But I learned at an early age to not scratch unless there was actually a mosquito bite or hives, and to check carefully to see if there really was an insect walking on my arm, as various strange sensations might suggest. Much of the time, there wasn’t. It’s pretty amazing how vivid the sensation of little legs touching my arm can be, and how it moves to another spot as soon as I scratch it. The solution appears to be to ignore as much of it as possible, and try and avoid tick habitat. 😉

On the other hand, nerve testing and genetic markers can identify most forms of CMT fairly easily. And at least knowing about CMT and its sequelae is some kind of explanation.

Sometimes I amuse myself by imagining that I have Morgellon’s, and tell my wife “I’ve got DELUSIONAL delusional parasitosis!”. She doesn’t think it’s funny.

It saddens me that feel like I have to comment on this whenever Morgellon’s comes up . . .

Delusional parasitosis is a real disease. Psychosomatic symptoms are real symptoms, and mental illness is real illness. No one’s accusing Morgellon’s sufferers of being “crazy” or “making it up.”

Delusional parasitosis is a real diagnosis of a real illness that real people really get, and there are effective treatments available.

It’s sad that these people have to go without effective treatment just so some insensitive clods can hold on to their outdated prejudices about mental illness.

@Mu: Either Orac changed the sentence, or I think you misread it.

He says:

Just because I don’t think that Morgellons is due to parasites doesn’t mean that I think that sufferers from Morgellons disease are crazy or “making it up” somehow.

So yes, these people are suffering. He agrees with that. Where he disagrees is with what is perceived by the sufferers as the CAUSE of the problem.

The most common histopathologic abnormality was solar elastosis, a degeneration of dermal connective tissue and increased amounts of elastic tissue due to prolonged sun exposure. However, this finding might be expected among a population residing in California

And they did this in the Bay Area? *looks up at the endless fog and clouds*

I think the word ‘delusion’ puts people off. We don’t want to think we’re ‘delusional,’ or that there’s anything wrong with our brains. Which is silly; the nervous system can be compromised just as much as the skin can. There’s no reason that a disorder of the mind should be any more stigmatizing than an infection, IMO.

@ Heather:

Whatever’s causing your itching, it is NOT “Morgellon’s.” As discussed, that simply isn’t anything real.

The pictures I’ve seen of the Morgellons “lesions” look almost exactly like what I currently have covering my right upper arm. Only I know exactly what caused mine. I have stress-induced dermatitis, secondary to OCD and GAD. It’s a pain in the rear and sets up a lovely cycle of itching leading to scratching leading to more itching. But that’s not as glamorous as some mystery disease.

A “money quote” from Randy Wymore, Morgellons apologist:

“There is always the question: How many of the study participants actually have Morgellons Disease?”

I confidently predict that this will be a core part of the “rebuttal” from those who stand to profit from continued belief in “Morgellons disease”. I expect that the argument will run along the lines of the “no true Scotsman” fallacy, for example:

“The failure to find consistent pathology (or something scary and unusual in the “fibres”) is proof positive that the subjects didn’t have Morgellons disease because – as we all know – everybody with true Morgellons disease has a consistent pathology and the fibres coming out of their skin are not simply strands of cotton or nylon.

Remember, you heard it here first.

Prometheus

I “foresee” how the results of this study will be interpreted by Morgellons Disease “patients”.

They are going to wrap up a number of conspiracy theories into one grand conspiracy.

The CDC and Big Government are in cahoots with Big Medical Insurance Companies (Kaiser), so that “Big Medical Insurance Companies (Kaiser)” do not cover treatment for this devastating disease.

“Everyone” knows that “Chronic Lyme Disease” is associated with Morgellons Disease and “everyone” knows that laboratories such as Igenex in California can test for “Chronic Lyme Disease” with their LUAT (Lyme Urine Antigen Test). *”Everyone” knows that the CDC and the IDSA do not accept LUATs performed by Igenex as being valid.

**”Everyone” knows that the conspiracy has been documented on the wiki/Talk website.

* LUATs have been tested repeatedly for sensitivity and specificity and have failed repeatedly to meet lab standards for accuracy.

** See http://en.wikipedia.org/wiki/Talk%3AMorgellons/Nielsp

The fatigue, short-term memory loss, attention deficit, impaired thought processing (brain fog), depression and feelings of isolation can all be symptoms of depression.

Add in an excessive focus on cleanliness, too frequent hand washing and bathing, low humidity and you get itchy dry skin. Excessive use of certain vitamins can certainly cause tingling.

Itchy skin gets you focused on examining the skin with a magnifier and, low and behold, there are all sorts of fibers they have never contemplated.

Social isolation from depression means you have lots of spare time to obsess about these new ideas. You get compulsive about removing and collecting these strange fibers. You try to talk to people but they just don’t understand. Which deepens the depression, and the compulsion, and frustration.

It also opens people up to paranoia and conspiracy theories. A scan of the Morgellons sites will find comments and links to entire imaginative constructs linking it to chemtrails, nanoparticles, HARP, mind control and the dark nether regions where Alex Jones and friends are rulers of the kingdom of crazy. Where everything is part of a intricate and manifold tapestry of conspiracy and intrigue.

A world so out there that people can claim, with a straight face no less, that Obama spend time working for an obscure defense contractor as a time traveling agent functionary on mars and a considerable portion of the crowd nods their heads knowingly.

It is also a world where people can talk about their Morgellons and people will be accepting and supportive, even going so far as to integrate your assertions into their assumptions, as long as you are accepting of the resident crazies pet conspiracy theories. The unwritten rule is that you will not demand proof, apply science, or question too closely anything posted. If someone says it it is to be accepted as fact.

“It saddens me that feel like I have to comment on this whenever Morgellon’s comes up . . .

Delusional parasitosis is a real disease. Psychosomatic symptoms are real symptoms, and mental illness is real illness. No one’s accusing Morgellon’s sufferers of being “crazy” or “making it up.”

Delusional parasitosis is a real diagnosis of a real illness that real people really get, and there are effective treatments available.

It’s sad that these people have to go without effective treatment just so some insensitive clods can hold on to their outdated prejudices about mental illness.

Posted by: HP | January 26, 2012 11:31 AM”

I wanted to reiterate what HP said, so that any Morgellon’s sufferers (gosh, I hope that nomen doesn’t stick) understand that researchers aren’t dismissing their suffering, just that we don’t know what it is yet.

The study does show some correlations that can lead to different kinds of studies, and possible treatments. If someone with Morgellon symptoms have symptoms of other mental diseases, perhaps treatments for those illnesses will alleviate the symptoms of Morgellons.

People with depression feel more pain and aches than those without depression-so a med that relieves depression often relieves pain. I have a degenerative bone disorder in my back-I take Celexa, an antidepressant, for back pain.

Morgellon’s is real. What it is, we don’t know yet, and unfortunately, scammers are out to take advantage of people with Morgellons.

I found recently that SLS seems to make my skin really itchy ( most shampoos, bubble bath products contain it). Is that “psychiatric?”

HeatherD70 @15: What you have is very probably atopic eczema. I get the same sort of thing on my ankles, shoulders and arms, where my clothing rubs the most. Try wearing natural-fibre clothing, using allergen-free soap powder and allergen-free moisturising cream when it itches. That all works for me – I was scratching myself until I was bleeding, before I cottoned on to what was causing it.

And then there are some “sufferers” of Morgellons that take it to a completely new level. Vaccines, chemtrails, electromagnetic waves, nanoparticles, self-replicating nanomachines, and aliens are all part of a huge government conspiracy towards transhumanism. And apparently the lint that accumulates at the base of the bristles in your hairbrush are PROOF that you have also been infected with Morgellons.

http://www.morgellonsexposed.com/

Morgellons is obviously bogus, but I can’t help feel a twinge of sympathy for the sufferers. It can be really difficult when you’re having a problem, and the physician you encounter seems to move too quickly to the explanation that whatever you’re feeling is all in your head (and does it in a tone that makes you feel like he’s twirling a finger at the side of his head in the universal symbol for crazy). I do know that some problems ARE in people’s heads, but I’m a techie, and I know how easy it is to blame ‘user error’ when you get saddled with a complex, sporadic and unpredictable problem – and how that judgement can be wrong. It’s super frustrating when it’s your computer, and it’s even more frustrating when it’s a persistent pain or itch or other problem in your body. I don’t know how you get from there to trying to prove it’s alien fibers or whatever, but we all know that people will grasp at explanations, no matter how silly.

[email protected] 33 – if SLS means sodium lauryl sulfate, it is a known skin irritant: http://www.cosmeticscop.com/cosmetic-ingredient-dictionary/definition/1396/sodium-lauryl-sulfate.aspx

If you switch to products that contain milder surfactants: http://www.cosmeticscop.com/cosmetic-ingredient-dictionary/definition/1453/surfactant.aspx and avoid bar soaps entirely (too drying), that should help. Products with heavy fragrances and/or essential oils can also cause skin irritation.

So no, it’s not psychiatric.

@15 … Heather, you have developed a self-perpetuating skin problem. It may have started with dry skin, but you into self-inflicted pain now.

If nylons and caffiene make it worse, quit them.

Use as little soap as possible, as seldom as possible. Shower with nothing more than warm water and a soft washcloth, and use soap only on armpits and groin.

Use a good moisturizing lotion on your legs and arms – wherever the itching is a problem.

If you have an itchy spot, slap it, don’t scratch it.

What about Silvermaven’s comments regarding Morgellons on the Jenny McCarthy thread of December twenty-eighth?

What about Silvermaven’s comments regarding Morgellons on the Jenny McCarthy thread of December twenty-eighth?

What about it? And what about a link?

Vaccines, chemtrails, electromagnetic waves, nanoparticles, self-replicating nanomachines, and aliens are all part of a huge government conspiracy towards transhumanism.

Judging by the self-described “Transhumanists” I’ve run across, I’ll take the Etheric Warriors.

“It can be really difficult when you’re having a problem, and the physician you encounter seems to move too quickly to the explanation that whatever you’re feeling is all in your head …”

That’s exactly what happened to my father. Early 1960s, Freudian psychoanalysis raging through the medical community like a hurricane, genetic testing unheard of. The poor man was at the end of his tether with invisible ‘insects’ ravaging his hands and arms. So his ‘treatment’ consisted entirely of exhortations to disclose and face up to all his sexual ‘hangups’. (Two of our GPs were well advanced in getting their psychiatrist qualifications.) Seeing as he didn’t even like to talk about his day at work, this was not an opportunity he seized upon with glee.

We may not now have that particular silly notion about psychological underpinnings of problems, but the leaping to conclusions about ‘stress’ and a ‘busy life’ being the source of symptoms can be disheartening for patients with less-than-obvious conditions.

Dangerous Bacon @9:
Now that the big CDC study’s results have been released, the Morgellons “commmunity” will be itching to attack the big government coverup

I see what you did there… 😀

If you verify that the “fibers” are merely normal fibers one is surrounded by, and that the lesions, sores, and crusty material is all caused by itching (and these cause the fibers to adhere), then what do you have left?
Itching and dermatitis primarily from the sound of it.
And itching and dermatitis can have many, many causes.

Interesting how ALL the sores are in places that sufferers can reach (ie none in the small of the back).

@46, Actually, if you’re motivated enough, reaching that spot between your shoulder blades is a lot easier than you’d think. I once gave myself a lovely set of scrapes by using a butter knife to reach those spots. I itched so much I would have used sand paper if someone had told me it would help.

I know all to well how bad itchiness can really get. Despite keeping my nails so short that they’re only a millimeter or 2 long, I have often scratched until I bled. But, unfortunately, I also know all to well that there are no magical solutions. I doubt I’ll ever be cured of my skin issues, but I have learned to manage them. Which means it’s a perfect condition to breed woo in those prone to it. Complex causes, no cure, and many doctors simply having to shrug and say “It is what it is.”

The thing that distinguishes “Morgellon’s” from other skin or neurological disorders is that patients are unshakably convinced that their symptoms are caused by a parasite, infectious disease, or foreign substance, and insist that any doctor who disagrees with this must be lying or not taking them seriously: in other words, it is caused by something external and could not possibly be a function of their own bodies. I see commonalities with biomedical autism ideas (toxins, vaccines, etc.) — in this worldview, problems are caused by foreign substances, not something native to the self. Disease as an invasion. Then there are people who describe cancer as masses of yeast or putrefying acids or whatever it is — no way these could be my very own cells! Not so very far from seeing disease as caused by witchcraft: there is nothing wrong with me, instead I’m being attacked.

The conclusion of this study was completely inappropriate – trying to blame the suffering because 50% had drugs detected in their hair. This isn’t fair because the suffering of this condition can lead to patients obtaining prescription of drugs such as opiates and benzodiazpeines. And the medical journal made it pretty clear they were suffering when you dig into the details.

Many had infection, markers of inflammation, and a positive ANA. Some others had markers for possible Hepatitis C virus, Hepatitis B virus, and some other infections. This study was a small sample size of only 40 patients, but they seemed to find quite a lot of abnormalities in my opinion.

Furthermore, how did they determine that the cellulose fibers they found is consistent with cotton fibers? Is this really possible? If not, the authors should have made it clear that they could not determine exactly what the fibers were or their origin. Cellulose fibers can be from a number of things. For an example, some species of bacteria secrete cellulose to create biofilms. That’s just one example, and I am not saying that is what is happening.

The data obtained from this study really isn’t too bad, It would have also helped to provide a table of comprehensive data obtained from infections, lab results, and inflammatory markers to get a better idea of how many total are suffering with something detectable and how many have co-morbid conditions. I would have liked to see more inflammatory markers looked at instead of the non-specific CRP and ESR.

Parts of the conclusion is horrendous and inexcusable in my opinion. It feels as they are trying to convince the reader that the people in the study are drug addicts.

However, this study has made it clear that that at least a portion of these patients may be suffering from something that is detectable, and it’s not “all in their head”. Furthermore, even with absence of laboratory evidence of anything they tested for, calling people delusional (especially when some have sores on their back they can’t even scratch themselves) does not seem appropriate. No matter what the condition is, or what you want to label it, all of these patients are suffering, and deserve compassionate medical help. And just because they couldn’t find a single shared laboratory marker among all patients this study doesn’t mean the disease is not real. It means they couldn’t find a shared laboratory marker based on the ones they chose for the study.

We must keep in mind that these patients have chronic problems and publishing articles calling them delusional and crazy doesn’t seem to be making them disappear. So instead of blaming the patient for their illness, I think it would be more appropriate to explore ways to help them. And saying, “You are delusional, take this drug” isn’t the type of care I am talking about. That approach would be insulting to anybody.

@46, 47: Is reaching the area between your shoulder blades supposed to be hard? I can reach it easily, and I don’t think I’m particularly agile (“remarkably rigid” is how one PE teacher described me).

“We may not now have that particular silly notion about psychological underpinnings of problems, but the leaping to conclusions about ‘stress’ and a ‘busy life’ being the source of symptoms can be disheartening for patients with less-than-obvious conditions.”

Yes, that’s exactly what I mean. It seems as though nearly everyone* I know who had a difficult-to-diagnose problem which did, ultimately, turn out to have a Proper Scientific Name, was told somewhere along the path to a diagnosis that it was probably stress-related and told to quit caffeine and get more sleep. Which isn’t awful advice overall, but not particularly relevant if the problem is pernicious anemia or whatever. Again, I’ve certainly been guilty of this myself in my non-medical diagnosis of why people’s computers were misbehaving, so I don’t mean this as some sort of sweeping indictment of the medical profession or medical professionals. It’s a human tendency, to want to wave away anything inexplicable and difficult. It just really sucks from the patient’s point of view, and when it meets up with susceptible individuals probably feeds all kinds of woo.

* anecdote, hyperbole, confirmation bias, but still

The conclusion of this study was completely inappropriate – trying to blame the suffering because 50% had drugs detected in their hair. This isn’t fair because the suffering of this condition can lead to patients obtaining prescription of drugs such as opiates and benzodiazpeines.

Did you even read the paper?

We found evidence of drug use in 50% of participants. Formication can be a side affect drug use (prescription and illicit) and drug withdrawal, but the extent to which case-patients’ drug use contributed to, or was being used as a treatment for, the condition was not determined. The high prevalence of drug use also may represent some case-patients’ attempts to alleviate frustration or symptoms associated with the illness.

They are not saying anything even vaguely similar to what you claim, and in fact are pretty close to your own argument.

Many had infection, markers of inflammation, and a positive ANA. Some others had markers for possible Hepatitis C virus, Hepatitis B virus, and some other infections. This study was a small sample size of only 40 patients, but they seemed to find quite a lot of abnormalities in my opinion.

None indicative of parasites.

Furthermore, how did they determine that the cellulose fibers they found is consistent with cotton fibers? Is this really possible?

Read the bloody paper, for crying out loud. They describe it. Also, you might want to check a dictionary. “Consistent with” is not the same thing as “definitely is.” IOW, the fibers provide no evidence of anything out of the ordinary since they can be credibly accounted for as coming off cloth.

That’s just one example, and I am not saying that is what is happening.

BS. You are quite clearly trying to claim that some such IS happening. Your protestation to the contrary is completely unconvincing.

Parts of the conclusion is horrendous and inexcusable in my opinion. It feels as they are trying to convince the reader that the people in the study are drug addicts.

Since we’ve already established that you didn’t bother to read it, why should we pay any attention to what you think is “horrendous and inexcusable” when you made it up?

However, this study has made it clear that that at least a portion of these patients may be suffering from something that is detectable, and it’s not “all in their head”.

Nobody denies that they are suffering. The question is, from what.

Furthermore, even with absence of laboratory evidence of anything they tested for, calling people delusional (especially when some have sores on their back they can’t even scratch themselves) does not seem appropriate.

Again, you clearly don’t know what’s actually being said. A conviction that symptoms are caused by parasites, in the face of convincing evidence to the contrary, qualifies as delusional parasitosis. This is NOT a claim that the symptoms are a delusion. Your implication otherwise is a lie.

No matter what the condition is, or what you want to label it, all of these patients are suffering, and deserve compassionate medical help.

Absolutely. And maintaining that there’s some kind of parasite producing mysterious fibers is quite the opposite of “compassionate medical help.” It actively IMPEDES proper medical understanding of the condition.

We must keep in mind that these patients have chronic problems and publishing articles calling them delusional and crazy doesn’t seem to be making them disappear.

We’ve been over this; your claim here is a lie.

So instead of blaming the patient for their illness

Which nobody is doing.

I think it would be more appropriate to explore ways to help them.

Trying to figure out what is actually causing their symptoms doesn’t count as exploring ways to help?

@53 If only there were some device or tool that could be used to extend one’s reach and help one scratch areas that might otherwise be unscratched. Or even a surface that one could rub against to relieve the horrible itching sensation. Sadly, until some mad genius creates such a miracle of medical science…

Reaching it isn’t so hard, but try scratching it. Not easy.

No particular difficulty here. Then again, I’m not exactly Charles Atlas.

Haha, yes there are backscratchers, but they were talking about how it’s interesting Morgellon patients always seem to have their lesions where they can easily scratch with their hands. This is interesting because although you can certainly use a tool to scratch your back, *unconscious* scratching won’t usually involve a tool. People tend to underestimate how often they scratch themselves pretty severely; nobody believes they’re doing things they’re not aware of, but we all are of course.

I’m just delurking to say that I now have an itch between my shoulder blades. You bastards.

@56 – “People tend to underestimate how often they scratch themselves pretty severely; nobody believes they’re doing things they’re not aware of, but we all are of course.”

Absolutely – and they are also scratching themselves in their sleep. That really limits where the damage is going to be.

They are not saying anything even vaguely similar to what you claim, and in fact are pretty close to your own argument.

It’s not necessarily what they say, it’s how the information is presented. It seems that the study authors thought it was important to talk about drug use many times over in the study. It reads as if they have a bias that it’s drugs.

They mentioned that 12% had a history of substance abuse for example. What substances? Does marijuana count as substance abuse, because that wouldn’t be too surprising among California residents. The study doesn’t say. How does this compare to the normal population? How does this figure compare to others with debilitating chronic conditions? A quick search, and I found a study that found 19% of people with multiple sclerosis (PMID: 14760950). Among the normal population, about 6% of Americans abuse drugs. Illicit drug use in the United States was 8.3% in 2006.

http://www.drugabusestatistics.samhsa.gov/nsduh/2k6nsduh/2k6Results.cfm#Fig2-1

So the study says that 12% of the patients had a previous history of drug abuse. How many were still doing drugs? Anyway, even with the small sample size, the number is by no means high and seems pretty consistent with the normal population. Of course you would need a larger population to determine if these people are more prone to drug abuse.

Many had infection, markers of inflammation, and a positive ANA. Some others had markers for possible Hepatitis C virus, Hepatitis B virus, and some other infections. This study was a small sample size of only 40 patients, but they seemed to find quite a lot of abnormalities in my opinion.

Many patients, and their physicians that treat them do not call the fibers parasites. They simply call it fibers coming from their skin. Of course, some patients may hold a belief that their fibers are a parasites, but it was already common knowledge the the fibers could not be identified.

Read the bloody paper, for crying out loud. They describe it. Also, you might want to check a dictionary. “Consistent with” is not the same thing as “definitely is.” IOW, the fibers provide no evidence of anything out of the ordinary since they can be credibly accounted for as coming off cloth.

I slipped up with words when I was writing quickly, but thanks for pointing out my mistake. Yes, the fibers could be accounted for coming off of cloth, but as far as I know, you can’t prove that it is. Randy S. Wymore Ph.D. from Oklahoma State University has been doing FTIR spectroscopy for years with several different forensic labs. The fiber from Figure 7 looks completely consistent with a Morgellon’s fiber. I will give them that. However, I remain very skeptical that they could determine it was most likely a cotton fiber. Fiber pulled off of clothing or a cotton swab isn’t visually consistent with the Morgellon’s type fiber under a microscope. They look completely different. Of course, I can’t provide a citation here because I’m not sure if they exist beyond power point slides and drafts.

BS. You are quite clearly trying to claim that some such IS happening. Your protestation to the contrary is completely unconvincing.

I am not claiming such a thing is happening. I find the evidence that these fibers are from clothing as unconvincing. If so, one could take a piece of scotch tape, pull some fibers off of clothes, and show that it is consistent with a Morgellon’s type fiber. I agree that I am probably unconvincing since there is not published medical literature to back up what I am saying. I understand that when I can’t support what I say with published medical journals, my words will be taking with lots of skepticism. That’s ok.

Since we’ve already established that you didn’t bother to read it, why should we pay any attention to what you think is “horrendous and inexcusable” when you made it up?

I do think all the drug data is inappropriate as I already explained above.

I don’t have time to respond to each thing at this point, so I’ll stop here for now.

@50. Reaching it isn’t so hard, but try scratching it. Not easy.

Can’t say I find it hard. Not exactly easy, perhaps, but I can’t imagine it falls into the area of too hard to do unconsciously.

@54, As I’ve noted, I once did some impressive damage using a butter knife to reach. But if some people can easily reach their entire back to scratch with their finger nails, lucky them. (Or maybe not. My worst trouble spots for perpetuated itching are the ones I can reach easily with my nails).

Re. scratching the middle of your back: excess weight can make it difficult to reach, and even if you can reach it easily, it’s not easy to get the leverage you need to scratch really hard, which is what you want to do when you suffer from eczema. I’ve strained muscles in the front of my shoulder by scratching my back in my sleep. In my experience, eczema itching is different from ‘regular’ itching in that the skin feels like it itches under the surface. No matter how bloody and raw the skin can get from being scratched, it still itches underneath.

For whatever it’s worth, I can reach and scratch all of my back. My joints hyper-extend, which seems to make it easier.

adelady @ 4, you are nearly convincing me to get tested for CMT (my mother has it). I didn’t realize itching was a symptom.

I can reach all of my back, but it’s not exactly what I’d call “easy”. Not something I’m going to do without meaning to, certainly. Maybe it’s because I have a combination of broad shoulders and short arms? When I really want to satisfy an itchy back, though, I always need a wall, a tool, or a friend to scratch it for me.

@Pseudonym:

If Morgellons fibers aren’t textile fibers, but are produced by the disease, then send samples to people who are experts in that sort of thing; they’d be delighted to be able to publish a paper about something totally new.

Natalie, getting tested is probably a good idea. Especially if you have problems using scissors or secateurs because your hands go numb.

But, funny. I “knew” I had it before I was tested, but I still found the positive result distressing at the time. Now I know to not buy bras with straps and not to persist with shoes that make my legs tired. And I’m reconciled to my hands gradually finishing up with the weird question mark shape when the muscles are finally, completely, useless. But for me, that won’t happen until I’m close to 90 so, hey ho, worse things happen at sea.

The great advantage of a positive test result is getting good advice about suitable exercise. It really is vitally important to “stretch” all those muscles at the end of the ‘long nerves’ to keep maximum strength and usefulness. And never, ever wear a shoulder bag or carry anything heavy in a plastic bag. (4 or 6 months of hand numbness is no joke.)

Yes, the fibers could be accounted for coming off of cloth, but as far as I know, you can’t prove that it is.

The burden of proof is on those who say the Morgellon’s fibers do not come from a conventional source to demonstrate that the fibers cannot be common textile fibers. If I claim that I was aboard an alien spacecraft, and as “proof” I offer a jug of a mysterious clear liquid supposedly not like anything found on Earth, I’m the one that needs to demonstrate some way that the liquid doesn’t act like plain ol’ water – it’s not up to everyone else to run every single conceivable test to prove that it does act like ordinary water and therefore probably is.

Pseudonym:

You are the one who is “blaming the patients” and stigmatizing mental illness.

The brain is an organ, and is subject to imperfections and malfunctions, as are other organs. “Delusion” sounds bad, to laypeople. But it’s a symptom, and one that can be addressed as such. I hope that if someone described an anxiety disorder, you wouldn’t insist that the doctor who had diagnosed them was blaming the patient by giving them a psychiatric diagnosis.

I have problems with itching that seem to be some combination of dry skin and allergies, exacerbated by rubbing at the areas that itch. I know that scratching doesn’t help, but I can’t always stop myself. When it happens, I don’t conclude that I am “at fault.” I do things like deliberately tuck my hands under a blanket if my nose itches, or put vaseline on my skin to try and soothe it. I also run a humidifier. And I grumble. Fortunately, that’s as far as it goes: I talked to a dermatologist, she found no infections, and could recommend only a change in soap and the above-mentioned vaseline.

Yes, it’s hard to accept that I am likely to have this problem every winter. I sympathize with people who can’t believe that there is no curable physical cause for their itching. I’m not claiming to be better than they are: just more fortunate.

That my itching isn’t psychological doesn’t actually help much: it still itches.

This is somewhat off topic but not entirely. In my work I have for years received countless insect bites usually from carnivorous flies I think but am not sure because they are so small. They itch like the dickens (the bites you never feel the flies on you or when they bite you). The only thing I have found that seems to relieve the itching to a reasonable extent is very hot water applied liberally, that is showers so hot they are nearly painful. But it works, the itching is ameliorated for up to a few hours.

My question is, why does this work? It might possibly be of benefit to others who suffer from non-specific itching as well. It can be used to counter the itching induced by plant secretions (such as poison ivy) but care must be exercised to completely remove the oils that cause the reaction first, that is copious amounts of soap and water on the affected area to begin with.

Somehow I came across this site and it makes for interesting read. I’m one of those delusional people who’s entire family with the exception of one has this disease. It all started with me, but quickly found it’s way to my son, mother and one brother. I don’t know of anyone else I’ve ever given this to, so my first thought is it has some kind of DNA component to it. However, then how did I get it?

If you want to know the real story of morgellons, you need to talk to someone who has lived it. I find it disturbing what is put out about this disease on the internet. I never think I have a machine in my body, but I can tell you I was living a normal life with my family when I found it impossible to sleep in my bed because of the feel of pinpricks all over my body. I only wish I were delusional, then there would be help for me and my family. There are babies with this disease, born of mother’s with what they call morgellon’s. How can a 4 month old be delusional. I now know, the pinpricks were the fibers which were all over my bedroom and my bed. I don’t know if they were entering my body or leaving it or both. I just know what I felt. My family’s life would never be the same.

I’ve yet to see an article or a show on TV that tells much about this disease. I don’t think they could, because it would frighten to many people if they actually would believe it exists. It’s hard for me to believe it and I’ve had this for 8 years.

Why would the CDC wait years to come out with a report that is sure to prevent any real help for us, a very good question isn’t it? I was never one for conspiracy but I know it wouldn’t be hard to find evidence of this disease, so I know the CDC or Kaiser or both lied. The question is why? Not to frighten people maybe? I don’t know why, I just know they did.

The brain is an organ, and is subject to imperfections and malfunctions, as are other organs. “Delusion” sounds bad, to laypeople. But it’s a symptom, and one that can be addressed as such. I hope that if someone described an anxiety disorder, you wouldn’t insist that the doctor who had diagnosed them was blaming the patient by giving them a psychiatric diagnosis.

I agree. However, I don’t know if I agree that the brain is completely responsible for the symptoms of Morgellon’s. In my opinion, Morgellon’s looks like a form of Chronic Fatigue Syndrome and/or Fibromyalgia with something causing skin symptoms. Patients with these syndromes are often told by their doctor that they are suffering from anxiety or depression. Sure, these are just symptoms, but just because these are symptoms of the illness doesn’t mean they are the cause. And there can be organic causes of anxiety and depressive disorders, so you can’t assume these are always caused by mind/thoughts.

And yes, many with conditions such as Chronic Fatigue Syndrome and Fibromyalgia are still mistreated by much of the medical community and hospitals. Some of the patients that are mistreated are severely sick to the point they are bedridden. They may present seizures, infection, inflammation, hypercoagulation, panic attacks, orthostatic intolerance/syncope, and more, but they are still a target of disbelief for some reason that I don’t understand. Some of the more severe cases can look a lot like a SLE patient. I’m sure some here are going to try to deny this statement, but it’s the truth.

And once one gets written of as having having a “mental disorder” by “ruling everything out”, many doctors refuse to do further testing. I think this study makes it somewhat clear that even if Morgellon’s is not real, they may have other conditions or autoimmunity causing or contributing to much of their symptoms. If I remember right (and someone can correct me if I am wrong), the study failed to mention how many patients were previously diagnosed autoimmune conditions since there was a fair number if positive ANAs. It would have been a lot more interesting if they measured a number of specific inflammatory markers and immune markers instead of non-specific markers such ESR and sed rate. I guess the budget prevented them from doing this.

Skeptics in the medical community seem to jump to very quickly to anxiety/depression explanations when they can’t quickly identify a problem. I’ve never understood how a skeptic can be so skeptical about everything, but so willing to jump to psychosomatic explanations at the sound of the gun without any evidence to support their assumption. It seems to me that many doctors/humans just don’t want to admit when they don’t know.

Oh, and what’s the average time it takes to identify the cause of a chronic illness? Has there been any other chronic illnesses that were at one point was target of disbelief amongst the majority? Right.

“Why would the CDC wait years to come out with a report that is sure to prevent any real help for us, a very good question isn’t it? I was never one for conspiracy but I know it wouldn’t be hard to find evidence of this disease, so I know the CDC or Kaiser or both lied. The question is why? Not to frighten people maybe? I don’t know why, I just know they did.”

Marilyn…why would doctors and scientists lie? You’ve made a serious allegation here with no plausible explanation.

I presume you, your son, your mother and your brother who now have your same symptoms have been to a slew of doctors and specialists. What have they all told you and your family about the symptoms? Are these personal physicians all lying as well?

You knowledge about DNA or genetics is spectacularly ignorant. If there was “some component of DNA” Morgellons disease symptoms would not have shown up in three generations of the same family within a short period of time.

The mind came play tricks on you and I suspect that the first diagnosis within your family (your’s), has caused the onset of symptoms in other family members.

Try to get some psychiatric help for yourself, while still following the advice of a dermatologist for topical creams and antihistamines. And, for goodness sake stay away from crank practitioners and internet sites where people are taken in by pseudoscience.

I can assure you that I need no psychiatric help. I had a physician who left me go when I first went to him in 04 with some of the issues I was experiencing. Looking back on those early days I can understand how I must have sounded. This disease is very scary when you first start seeing and feeling symptoms. After I was diagnosed as psychotic by the second one, like most with this disease I started keeping my mouth shut.

You will have to overlook my ignorance on some things as I’m not a doctor or a scientist but I lost my innocence that doctors knew everything when my dad got cancer 12 years ago followed by mom with alzheimer’s. Mom lives with me and she has this disease as well. When I came down with this disease my son and I lived in an apt. not with my brother and mom. Mom wouldn’t have had the ability to think she had anything, she just got it like my brother did. He’s a veteran and could probably go to the VA but he chooses not to see anyone about this as we know there is no help. I don’t know how they got it, but the person whom I believe gave it to me was in there home a lot during my father’s illness.

I’m saying that this disease no matter what name you want to put to it is very real. Your assuming I need psychiatric help and you don’t know me or what I’ve experienced. In the beginning I did think I was crazy, but the psychiatrist told me to tell my doctor to check all physical problems before diagnosing me as psychotic and gave me a clean bill of mental health. There are more psychiatrist helping people with this disease than doctors.

If the disease is real, than the reports that this has to be all in our heads is a false one. That’s what I’m saying. Most doctors don’t have a clue what this is or how to treat it. Some do try but with my son’s doctor he was waiting to see the report from the CDC to know how to proceed. I wonder what he’ll think now? This report is a damaging one for those of us that just want help to get our lives back.

I have no creams nor take antihistamines and never did, nor do I have a dermatologist. I saw one who looked at my skin and talked into his recorder that I had an unknown etiology. My mother’s doctor mentioned that my mother has some unusual skin symptoms. I said nothing, I know better. I do believe that there are many people who are desperate enough to try many things to relieve symptoms. This is kind of understandable to me and not crazy. There could be a few really crazy one’s who don’t legitimately have this disease. Most people are like us. We lived a normal life like everyone else who contracted a bizarre and frightening illness through no fault of our own.

Do you think Joni Mitchell or Billy Koch are psychotic too? His symptoms cost him his pitching career. Why is T Boone Pickens donating to the cause? Is he nuts too? I don’t know him, so I can’t vouch for him but often wonder why he’s involved.

Many are intensely itchy, like my son. He tries his best to live some kind of life as he is young and getting married in the fall but he can’t lay down and sleep more than a couple of hours without waking up intensely itchy. He can’t rest day or night, this is heartbreaking for me as we all need to be able to rest. He’s been to the Cleveland Clinic and tried all the creams and antihistamines they don’t work. He never mentions this disease, we all learn not to.

We get this disease somehow, so to reassure the public that there is nothing contagious about it is wrong. I wish all the energy trying to make us sound crazy would be spent in assuming for a minute it’s real and what could cause this to happen. If you don’t think I make sense, the man who was pointing to his head about how mentally ill we are has no authority to speak at all. Why was he on fox making judgements like that. Maybe he should listen to those patients he says have come to him for help instead of dismissing them. I read above that it is up to us to prove this exists, but it’s hard to do that when your dismissed. This long overdue report means nothing to me. I read it best I could, but it’s pretty vague and shows no real understanding of this disease. There are many fibers involved and not a cotton fiber that may or may not have come from the environment.

This disease is not about picking at one’s skin. The lesions are made from what comes out. My sister in law is a pharmacist in Columbus and long before we knew anything about morgellons she told my son that his bumps looked like they came from the inside out. Your all entitled to believe as you wish, but I thought this was a site where people had open minds. There is no disease like this one. The various fibers were compared to all other known fibers by Dr Wymore and none matched. He himself was a skeptic, but to his credit he took a look and realized that this was indeed a real illness.

Perhaps change comes when the scientists sit down and examine their own hair under a microscope. Do areas fluoresce? And why might that be?

So if I’m reading Vasha @48 correctly, the study doesn’t actually accomplish anything. The people who already thought the condition was psychological have their belief confirmed; those that believed it was physical are shown wrong, but by the nature of the condition won’t change their minds.

No, wait, I take that back; it may at least prompt some action against the “quacks” Orac mentioned, if not by the FDA then by the insurance companies who may have been paying for the treatments.

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