Bookmark and Share  
Home Forum Index Politics Philosophy Diversions Theology Join Tips & Rules
SelectSmart.com SelectSmart.com®
Before you decide
Over 20,000 selectors
Welcome! » Log In » Create A New Profile

Morgellons Disease

Posted by PowerToThePeople 
Anonymous User
Re: Morgellons Disease
January 30, 2012 07:27AM
PowerToThePeople Wrote:
-------------------------------------------------------
> Curt - You seem convinced that all Morgellon's
> sufferers are nuts. The director of the division
> of parasitic diseases and malaria at the Centers
> for Disease Control and Infection said that the
> study shouldn’t be interpreted to conclude that
> the problem is all in sufferers' heads. Where is
> the director's thinking in error?

PttP,
Except you aren't quoting Dr. Eberhard. I didn't find Dr. Eberhard's comments in their original form. I've looked for a while. I've only seen his remarks as part of articles with accompanying editorializing. But as for his quoted statements, nothing contradicts my earlier assumption that the patients are "nuts" as you say. I prefer the term "delusional". Yes, they were suffering, but psychotic conditions and mental anquish are real.

Quote:
“It’s a negative, but it really limits and narrows down the field of possibilities,” said Mark L. Eberhard, director of the division of parasitic diseases and malaria at the Centers for Disease Control and Infection. “By removing a couple of the big players -- infections and the environment -- that still leaves some wide-open territory about what could be the causes.”

“No common underlying medical condition or infectious source was identified,” wrote Eberhard and his colleagues.

“These people are definitely suffering from something,” Eberhard said. “It has impacted their lives greatly.” [vitals.msnbc.msn.com]

For me it's less what Dr. Eberhard said, than what the Morgellons patients themselves say that leads me to conclude they are delusional.
Quote:
But people who believe they suffer from Morgellons said that was exactly the result they expected from a government agency trying to cover up a larger problem.

“I’m pretty sure they’ll say we’re all delusional,” said Jan Smith, 62, a Concord, N.H. woman who runs the website “Morgellons Exposed,”which details her 15-year battle with the perplexing disorder. Her theories include fears that Morgellons is caused by alien beings implanting nano-technology in humans. [vitals.msnbc.msn.com]

Finally, in polite terms the CDC says they are "nuts". Their published reports concludes with:
Quote:
Neuropsychological testing revealed a substantial number of study participants who scored highly in screening tests for one or more co-existing psychiatric or addictive conditions, including depression, somatic concerns (an indicator of preoccupation with health issues), and drug use.This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link.
There was no indication that it would be helpful to perform additional testing for infectious diseases as a potential cause. Future efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms. [www.cdc.gov]
Re: Morgellons Disease
January 30, 2012 07:56PM
From the CDC report:

We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features [26]–[31].

[www.plosone.org]
Anonymous User
Re: Morgellons Disease
February 05, 2012 03:59AM
We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features

Yes, PTTP, I was wondering why CA had quoted excerpts before and after that section, but not that part. That is the CDC's face-saving way of admitting that their very expensive and slow study was in fact inconclusive.

Being a science fan watching this thing from the sidelines for the last few years, I have some concerns. For instance, I have a hard time with the idea that 115 self-reported cases selected by a health care insurer constitute even an adequately broad or unbiased sample, never mind allowing an exhaustive study. And the health care insurer (on the hook if the disease is real, off the hook if it's not real) did all the clinical evaluations and sample collection.

Then there's the narrow geographic distribution: almost everyone in the study seems to have been from the bay area of San Fran. Is the incidence of drug use higher there than the national average, perchance? There seemed to be a lot of drug users for such a small sample.

CA did refer to the fallacy of argumentum ad ignorantiam, the idea that absence of evidence somehow constitutes evidence. His point seemed to be that some people who are convinced that Morgellons is real point to the lack of conclusive proof that it is not. Interestingly, the CDC report itself seems to drift in the general direction of the same fallacy of reasoning; it is mentioned that it is not possible to definitely distinguish Morgellons from other known conditions (including delusional parasitosis). In other words, we can't prove that it isn't DP, so....

Finally, I find it very odd that no "lively" samples were obtained. From what I've seen so far, it doesn't take a whole lot of searching to turn up something like this:
[www.youtube.com]
[www.youtube.com]
[www.youtube.com]

I know the person who shot those video clips. To obtain those images required nothing more than a cheap digital microscope, a bit of damp tissue, and some patience. Apparently all the king's horses and all the king's men can't come up with that much.

There's a joke that I'm reminded of in connection with this whole investigation.

A guy has had a few too many at a party, so he's walking home late at night. It's of course very dark. Somehow he drops his house keys along the way. Another party goer comes along a few minutes later and finds him searching around on his hands and knees under the street light. He drunkenly offers to help, "Don't worry, Charlie, we'll find your keys. They're bound to be around here somewhere." Charlie points off into the darkness and says, "Well they're not where we are; they're way over there." His friend asks, "Well why are we looking here then?" to which Charlie answers "The light's better."

For as long as the health care establishment insists on only looking where the light is better, so to speak, Morgellons will remain the subject of "inconclusive" studies.
Sam
Re: Morgellons Disease
February 05, 2012 04:51AM
Omg, no one ever said they move!! Maybe it really is alien!
Re: Morgellons Disease
February 05, 2012 06:20AM
Interesting post, 55. Welcome to the SelectSmart.com forums.

Objectively speaking, it's either known creatures, a newly discovered species, a new species, or an elaborate hoax. They do seem to be consistent with complaints from sufferers of crawling sensations underneath their skin. Every account I've read included that complaint.

I have some concerns. For instance, I have a hard time with the idea that 115 self-reported cases selected by a health care insurer constitute even an adequately broad or unbiased sample, never mind allowing an exhaustive study. And the health care insurer (on the hook if the disease is real, off the hook if it's not real) did all the clinical evaluations and sample collection.

I'm embarrassed that I didn't think of that connection. Yes, that's suspect.

Because we live in a society that elevates the pursuit of profit as the highest good. In America's corporate culture, profit trumps everything, including human life. If a corporation can make more profit from human hardship or death than it can from advancing or sustaining human life, it will choose hardship and death if it thinks it can get away with it. And it usually can. This is the disease of the corporate state.

I'm not saying Kaiser's a villain in this. I hope it's not; it's me and my wife's HC provider. But I can't rule that out.

Do you know if the people who made that video have elevated the issue, say to an independent medical research laboratory they know they can trust? I'd be interested in a trustworthy and accredited second opinion on the phenomenon.

Thanks again for your post and videos. thumbs up



Edited 1 time(s). Last edit at 02/05/2012 06:21AM by PowerToThePeople.
Anonymous User
Re: Morgellons Disease
February 05, 2012 08:20AM
PowerToThePeople Wrote:
-------------------------------------------------------
> Objectively speaking, it's either known creatures,
> a newly discovered species, a new species, or an
> elaborate hoax.

I don't think it's a physiological condition, and I suspect it's mental, but that doesn't mean it's a hoax. It's real to the sufferers. The CDC didn't mince words that the mystery fibers were what a person might expect---clothing and blanket fibers that clung to their lesions. That they can analyze.
>
> I have some concerns. For instance, I have a hard
> time with the idea that 115 self-reported cases
> selected by a health care insurer constitute even
> an adequately broad or unbiased sample, never mind
> allowing an exhaustive study. And the health care
> insurer (on the hook if the disease is real, off
> the hook if it's not real) did all the clinical
> evaluations and sample collection.
>
> I'm embarrassed that I didn't think of that
> connection. Yes, that's suspect.
>
I believe there may have been more than one reason why the focused on the northern California area. First, that area seems to the epicenter of people complaining of Morgellons. From what I've read and heard, most Morgellonites are in that area. Second, if the cause was environmental, presumably there would be something in that area to investigate. Third, Kaiser was a partner in investigating this. They may have even initiated the investigation, and aren't they a California outfit?
Sam
Re: Morgellons Disease
February 05, 2012 08:54AM
Curt, But the threads move!! (lol)
Re: Morgellons Disease
February 05, 2012 08:13PM
Kaiser is in several states. It's basically an insurance company that performs health care, too.

Did you watch the videos, Curt?
Anonymous User
Re: Morgellons Disease
February 06, 2012 02:13AM
PowerToThePeople Wrote:
-------------------------------------------------------
> Interesting post, 55. Welcome to the
> SelectSmart.com forums.
>
> Objectively speaking, it's either known creatures,
> a newly discovered species, a new species, or an
> elaborate hoax. They do seem to be consistent with
> complaints from sufferers of crawling sensations
> underneath their skin. Every account I've read
> included that complaint.
>
>
> I'm embarrassed that I didn't think of that
> connection. Yes, that's suspect.
>
> Because we live in a society that elevates the
> pursuit of profit as the highest good. In
> America's corporate culture, profit trumps
> everything, including human life. If a corporation
> can make more profit from human hardship or death
> than it can from advancing or sustaining human
> life, it will choose hardship and death if it
> thinks it can get away with it. And it usually
> can. This is the disease of the corporate state.
>
> I'm not saying Kaiser's a villain in this. I hope
> it's not; it's me and my wife's HC provider. But I
> can't rule that out.
>
> Do you know if the people who made that video have
> elevated the issue, say to an independent medical
> research laboratory they know they can trust? I'd
> be interested in a trustworthy and accredited
> second opinion on the phenomenon.
>
> Thanks again for your post and videos. thumbs up

Greetings, PTTP.

I wonder if this phenomenon might be more easily investigated if the approach was not so dependent on data derived from the examination of self-identified sufferers. As has been noted, DP is a real psychiatric disorder; so if you invite the general public to self-diagnose something like Morgellons, it stands to reason that you may get a few cases of DP in the mix.

And if you also happen to be drawing your population sample from an area with a higher than average percentage of drug users, especially those using drugs such as cocaine and methamphetamine, you might well expect to get a few cases of "meth/crank bugs" - the crawling sensation reported by some users of these drugs.

A serious study of the phenomenon referred to as Morgellons (a word which by now means so many different things to different people that it might be best to drop it from the discussion altogether) would have screened out those two groups, or at least it would have included an entire separate group without any known drug or psychiatric background that might cloud the waters.

It would not be necessary for an interested party such as a health care insurer to deliberately try to spin the data in such a way as to avoid having to cover more drug costs for its members, though if such a thing were to occur it would certainly not be the first time anything of that kind ever happened. Even the most rigorously honest and objective clinician can drift into a tendency to see what they've been trained to expect to see. Let's assume no dishonesty on the part of the health care insurer. My question would still be, why have an interested (even potentially liable) party do the data collection at all?

As far as I know, no serious investigation has been undertaken by any independent and properly accredited lab - except perhaps for the work that was being done by Randy Wymore at the University of Oklahoma. It would no doubt be rather expensive to have a thorough investigation done without government funding; but looking at the inconclusive results of the CDC study, and especially the aforementioned concerns with regard to its methodology, it seems a proper study has yet to be made.

I'd like to touch again on that "looking where the light is better" mentality as it affects research and medical practice. Imagine what it would be like if we knew nothing about viruses and had no way of testing for them. Every viral disease we now know of would likely be described as a psychosomatic or even psychiatric illness to one degree or another. Exhaustive testing by even the very best clinicians and laboratories would reveal no pathogen, no physical cause for the symptoms. The results of any studies would be inconclusive.

If the phenomenon referred to as Morgellons represents the arrival of anything truly new or completely unfamiliar, there is possibly not enough in the range of standard procedures and training to enable a proper investigation. It may be that there is a greater need for original thinking in this case. It certainly looks as though those doing the study were looking where the light is better, running standard tests, looking for the familiar.

Another example of looking where the light is better can be seen in an approach used by doctors that is called differential diagnostics. It's a great investigative tool, really. It involves cross-referencing the patient's symptoms with known diseases and disorders in a systematic way that allows the doctor to zero in on a problem more quickly by process of elimination. A significant inherent weakness in this approach (every approach has a weakness) is that its usefulness is limited to known conditions.

Differential diagnostics would never have enabled a doctor to correctly diagnose a viral illness prior to the official inclusion of such diseases in medical reference manuals. In short, if you arrive at your doctor's office with something that doesn't really correspond to anything in the database, the doctor will either go with the nearest similar sounding thing, or you'll likely be told (politely, one hopes) that you're not really sick. At best, you might be prescribed something to address the symptoms. Lots of people experiencing the phenomenon referred to as Morgellons have been there.

One final thought. I'm not sure whether thinking of these items as "fibers" is particularly helpful. Fibers don't wiggle like the items in those You Tube clips, as far as I know. It is suggested that the composition of the "fibers" seems similar to cellulose. That would certainly be a novel way of evading the immune system's attack, since the body cannot break down cellulose and the immune system cannot penetrate it. If you look at those clips on sassulusmagnus's channel, there are a few in which it appears that there is something inside the item, as though the exterior is like a sort of sleeve or sheath from inside of which a more delicate and translucent item occasionally extends. Maybe fiber analysis is another area in which we are looking only where the light is better.
Anonymous User
Re: Morgellons Disease
February 06, 2012 03:37AM
Curt Anderson Wrote:
-------------------------------------------------------
>> I believe there may have been more than one reason
> why the focused on the northern California area.
> First, that area seems to the epicenter of people
> complaining of Morgellons. From what I've read
> and heard, most Morgellonites are in that area.
> Second, if the cause was environmental, presumably
> there would be something in that area to
> investigate. Third, Kaiser was a partner in
> investigating this. They may have even initiated
> the investigation, and aren't they a California
> outfit?

Greetings, CA.

In 2007, California was indeed the epicenter of reports in the USA, at least according to these folks:
[www.morgellons.org]

As of 2010 there appeared to be broader distribution, according to these folks:
[www.morgellons-research.org]

It's difficult to obtain absolutely reliable statistics, of course, due to the fact that the disease (if real) is far too variously defined, and due to the fact that the numbers are largely based on self-reporting. The geographic pattern of the progression of reports is interesting, though. In most cases, the earliest reports come in from areas near to either the coast or to inland waterways used by international shipping.

The investigation was initiated by the CDC at the federal government's request in 2008. Due to the relatively large number of reports from northern California, that area was chosen over Florida and Texas, both of which also had substantial numbers of reports by that time. As a major health plan operating in northern California, K-P was asked to do the initial clinical evaluations.

No doubt K-P had excellent facilities for carrying out their part in the study; but in the interest of objectivity, it would have made more sense to ask that this be done by a party that did not have a stake in the outcome. If this phenomenon referred to as Morgellons turned out to be real, K-P would possibly be in the position of having to pay out a substantial amount in coverage to its affected plan members.
Sam
Re: Morgellons Disease
February 06, 2012 04:11AM
55, Sounds like you are more than a science fan. Do you have some kind of special interest in Morgellons beyond normal curiosity? IOW, do you know someone with the complaint or maybe have some medical affiliation which gives you a stake in the game? Do you want to venture a seemingly educated guess about what is going on here?
Anonymous User
Re: Morgellons Disease
February 06, 2012 04:52AM
Greetings, Sam;

I do know someone with something like what is referred to as Morgellons; but as I mentioned to PTTP, the term Morgellons is almost meaningless due to extreme variations in the self-reported cases. He is the person who shot those You Tube clips for which I provided the links. I've known him since we were kids, and it's very hard to see him go through this. His experience with the health care system has been particularly disheartening. It's changed the way I look at health care, actually.

Is that Morgellons? I don't know; neither does he. But whatever it is that my friend is making videos of, it's certainly real. And it seems that his symptoms do resemble at least some of the reported symptoms of what is commonly described as Morgellons. His main interest in posting those clips is to (hopefully) get a positive, verifiable identification of those items by someone of authority in a relevant field. His first clips were uploaded in 2009, I believe, and to date there has not been even one educated, authoritative attempt at identification.

He has likely had whatever you see in those clips for upwards of 16 years, long before he (and most other people) had internet service at home. There is extensive sub-dermal damage as well as the widespread presence of non-healing wounds which cause him great concern and embarrassment. Fortunately, he has a dermatologist who has at least prescribed strong enough meds to eliminate the discomfort, so he hasn't felt itchy in a long time and he is able to sleep and able to work.

I have my thoughts about what general type of thing this might be; but I'm not a scientist or a doctor, so I think I'll reserve comment. What I will say is that at this point I suspect that no one knows what that is in those clips.
Sam
Re: Morgellons Disease
February 06, 2012 05:10AM
I thought you had to have some personal involvement with this. Please don't worry about being an official authority or expert on anything to voice your thoughts and opinions on this board. We've all been talking out of our asses around here for years and years and a fresh perspective however unsubstantiated would be oh so welcomed. Check out other threads while you're here, too. We can be a lively bunch on alot of subject matter and you seem pretty smart so I for one am interested in what you think. Please go ahead and speculate. Remember I'm the one up there who brought up the alien infestation theory, lol. It was supposed to be a joke but now....wow, they move!!! Creepy! And it must be torturous for your friend on so many levels, physically, mentally, emotionally, wow...
Anonymous User
Re: Morgellons Disease
February 06, 2012 06:13AM
Hi, Sam.

Thanks for the affirmation and the invitation to speculate freely. I prefer, however, to wait for someone to authoritatively identify the items in those You Tube clips. I am of the view that the investigation into whatever Morgellons turns out to be will only move ahead via the science community, of which I am not a part - professionally speaking. Whether those clips show a Morgellons related entity, as I said, I don't know.

Still, I would hasten to add that I believe that time is of the essence. I would hate to think that the very people we rely upon as watch dogs over the security of our health had so lulled themselves into an arrogant and complacent slumber that their very inactivity was instrumental in the arrival of some kind of horrible global plague.

I don't think that's over-reacting either. If HIV had been identified sooner, AIDS might never have developed into the global bogey man it has become.

And I will add that I marvel at the fact that an authority as eminent as the CDC was unable to obtain any "lively" (moving) samples in their study. That I do not understand. My friend says that now that he has become adept at collecting these items without destroying them, he could shoot videos all day. Most samples are apparently lively.
Sam
Re: Morgellons Disease
February 06, 2012 06:29AM
Why doesn't your friend just go to a lab technician at a hospital and extract a sample himself to be examined on the spot and noted by the tech so that the fact that they move is in his medical record? Also, do you have reason to believe it might be contagious? Yikes!



Edited 1 time(s). Last edit at 02/06/2012 06:33AM by Sam.
Re: Morgellons Disease
February 06, 2012 06:38AM
I can't imagine the frustration that sufferers of those "things" must be feeling, not to mention the physical and mental pain. I'm glad that your friend, 55Tele, has at least found some relief. Thanks for the light you've shed for readers here. You've educated me on several issues surrounding this phenomenon.

The geographic pattern of the progression of reports is interesting, though. In most cases, the earliest reports come in from areas near to either the coast or to inland waterways used by international shipping. - 55Tele

Considering the high volume of imports we receive from southeast Asia, which are some of the most unsanitary places on the planet, I'd be interested to know if the same condition is being reported in any of those places. Parasitic diseases tend to be prevalent in nations where most of the population lives in abject poverty.
Anonymous User
Re: Morgellons Disease
February 06, 2012 06:57AM
Hi, Sam.

Unfortunately that's not the way it's done. As seen in the CDC study, the procedure is to do a biopsy (needle or punch) or a blood test. It's all sort of high tech, at arm's length. One place takes the biopsy; another does the analysis (of course, looking only for familiar things - looking where the light is better).

Nobody actually spends time eyeballing a sample wiped off the skin with damp kleenex (that would be too low-tech), but apparently that's all it takes. My buddy simply wipes irritated areas with a damp tissue and then carefully examines them at 10x magnification with a jeweler's scope (a powerful magnifying glass). If he sees movement, he gets out his $200 digital microscope and opens up the related video recording software.

An interesting/frustrating catch-22 in all this is that if my friend was to try to show his videos to his doctor, it would likely be considered evidence of what's termed the "matchbox syndrome", an indication of possible DP. So one is really kind of screwed if one even presents this kind of thing to a doctor. That is why, after 16 years without meaningful help from professional health care, he has decided to focus entirely on having these items positively and authoritatively identified. In other words, he's moved from "please help me" to "what's this?"
Anonymous User
Re: Morgellons Disease
February 06, 2012 07:18AM
55Tele,
Your friend with the microscope could as a control, compare the Morgellon fibers to other fibers from clothing and blankets, etc. Fibers have a springy nature so it's not exactly surprising that they might appear to wriggle. Especially damp ones that a person pulls from their lesions. As they dry out they'd appear to be "alive". So he might want to compare them to drying fibers too. With a powerful microscope a person could detect minute movement and easily misinterpret that movement as self-locomotion.
Anonymous User
Re: Morgellons Disease
February 06, 2012 07:29AM
PowerToThePeople Wrote:
-------------------------------------------------------
> I can't imagine the frustration that sufferers of
> those "things" must be feeling, not to mention the
> physical and mental pain. I'm glad that your
> friend, 55Tele, has at least found some relief.
> Thanks for the light you've shed for readers here.
> You've educated me on several issues surrounding
> this phenomenon.
>
> The geographic pattern of the progression of
> reports is interesting, though. In most cases, the
> earliest reports come in from areas near to either
> the coast or to inland waterways used by
> international shipping. - 55Tele
>
> Considering the high volume of imports we receive
> from southeast Asia, which are some of the most
> unsanitary places on the planet, I'd be interested
> to know if the same condition is being reported in
> any of those places. Parasitic diseases tend to be
> prevalent in nations where most of the population
> lives in abject poverty.

Hi, PTTP.

I must say, it is interesting that the "fibers" appear to be cellulose or something similar, according to the CDC's study, and that for the past 20 years or so we've been importing a majority of our cotton from that part of the world, predominantly China.

Unfortunately, if something akin to Morgellons was to occur among textile workers, for instance, in that general part of the world it would likely go unreported or under-reported as such news might be expected to be an impediment to trade. Other very hazardous products have reached our shores from that part of the world before (children's toys decorated with lead based paint, pet foods containing toxic melamine, etc.) due to lax regulation enforcement, so it might not be a total surprise if the phenomenon turned out to be related in some way related to textile imports.

Outside of the Great Republic there supposedly are reports from other Pacific rim nations:
[www.morgellons-research.org]
Anonymous User
Re: Morgellons Disease
February 06, 2012 07:35AM
Curt Anderson Wrote:
-------------------------------------------------------
> 55Tele,
> Your friend with the microscope could as a
> control, compare the Morgellon fibers to other
> fibers from clothing and blankets, etc. Fibers
> have a springy nature so it's not exactly
> surprising that they might appear to wriggle.
> Especially damp ones that a person pulls from
> their lesions. As they dry out they'd appear to
> be "alive". So he might want to compare them to
> drying fibers too. With a powerful microscope a
> person could detect minute movement and easily
> misinterpret that movement as self-locomotion.

Hi, CA.

Good point about possible misinterpretation of the purely mechanical motion of drying fibers. Some of these items are apparently still moving up to a day or so after collection, though. I'm not sure whether cellulose would take that long to stabilize. Have you viewed the You Tube clips for which I provided links?

There is a measure of control built in to some of the clips, I suppose, as the tissue (collection medium) itself is composed of cellulose, and its fibers do not seem to exhibit this behavior in the clips.

Some of the raw (unedited) video files are over a half hour in length. It does seem a bit unlikely that something so tiny should take so long to dry.



Edited 2 time(s). Last edit at 02/06/2012 07:44AM by 55Tele.
Sorry, only registered users may post in this forum.

Click here to login


Map IP Address
Powered byIP2Location.com

This forum powered by Phorum