Yesterday, we looked at how real science works; today, in a repost from my old blog, we look at some really bad science. --PalMD
I've been meaning to touch on "Morgellons disease" (a form of delusional parasitosis) for a while, but haven't figured out how to approach it. Thankfully, others have. In the first referenced discussion, a paper was cited. This paper was such a great example of how not to approach medical science that I just had to address it in detail, section by section...
Background
The authors argue for a newly described illness which they call "Morgellons". It resembles in all ways except name delusional parasitosis, a condition where a person is falsely convinced that they have parasites in their skin. In general, if you wish to describe a possible new illness, you should start by coming up with a useful operational definition. This doesn't happen. Instead we get anecdotes.
It begins with a single practitioner's experiences. It's hard to overstate how problematic this is. Early in the HIV epidemic, solo practitioners in a few cities found unusual diseases, communicated with each other, and discovered the AIDS epidemic---the difference was that the discovered real diseases with shared characteristics.
This physician saw some patients who shared similar characteristics, and, rather than picking the most likely diagnosis, went straight for the zebra. A more apt metaphor might be a unicorn---she made her diagnosis based on a "research foundation" devoted to an illness made up out of whole cloth.
History
The next mistake is in linking the new "disease" with an account from a 17th century observer. The observations are old, non-specific, and based on no current medical science. He described an odd constellation of symptoms, and the Morgellons Movement adopted it. There is no way to validate 400 year old observations.
After co-opting a 400 year-old name, one of the authors started a foundation which "began accepting registrations from people with symptoms of this unrecognized disease." They lay out no clear case definition, and change the characteristics of the disease to fit the patient. "...[I]t soon became evident that other symptoms within this patient group, such as disabling fatigue, life-altering cognitive decline, joint pain, and mood disorders..." sometimes accompanied the skin symptoms. Shifting the goalposts in order to make your case definition more inclusive is not great science.
Symptoms
This section of the paper is devoted to a long list of symptoms which once again fails to give a case definition. In this paper, which purports to report an important emerging disease, it is disturbing that half-way through the paper, no disease has yet been defined. Perhaps one of the worst sins of this section is the confusion of correlation and causation based on a false premise. The authors assume (or beg the question) that Morgellons exists. Based on that assumption they assert that:
[t]he high incidence of psychopathology, which appears to be directly attributable to this disease, confounds the clinical picture for these patients as the seek validation for an insidious dermatologic condition that defies logic, while sometimes exhibiting obvious symptoms of mental illness.
Might they have put the cart before the, er, unicorn? If someone acts mentally ill, and has a bizarre set of illogical symptoms, why not put the blame where it belongs? To take a disease of the mind, and simply assert that it is a disease of the body, will help no one.
The next assertion is truly horrible. "It appears that the putative underlying infectious disease, which has been unrecognized and untreated, can cause psychopathology in many patients."
Holy crap! Now it's an infectious disease?!? Based on what? And it's an infectious disease that affects the skin and central nervous system? Maybe it's a variant of syphilis! How can these few clinicians (OK, only one is a clinician) have stumbled onto something so important and end up ignored?
Epidemiology and Transmission
OK...time for more unfounded assertions. "The total number of registrations on the Morgellons Research Foundation website is presently 2200, which is believed to be a fraction of the actual number of cases." Believed by whom?
Then of course they run into the same problem they've had from the beginning: "There is some evidence to suggest that skin lesions and fibers may not be readily apparent in all individuals with this disease... ." Then what defines the disease? How does one track the epidemiology of a disease with a name and no definition?
Pathophysiology
And here is the real coup de grace.
Skin biopsies of patients with Morgellons disease typically reveal nonspecific pathology or an inflammatory process with no observable pathogens...In general, pathologists look for signs of known diseases and, thus, may miss clues of Morgellons disease in biopsies.
OK. I can't go on. It's not just that a mainstream journal would publish such crap. It's that it makes my head hurt. But I will form a logical hypothesis that my headache has something to do with reading, sitting at the computer, and being frustrated. It seems unreasonable to posit that it is due to some unknown infectious agent that can be neither measured nor defined.
In the discussion section of the paper, the authors invoke Vienese physician Ignaz Semmelweis, a physician criticized as a crank in his own time, but later lauded as a hero. Robert Park said, "to wear the mantle of Galileo it is not enough that you be persecuted by an unkind establishment, you must also be right." This paper is not right---it's not even wrong.
References
Savely, V., Leitao, M. (2006). The Mystery of Morgellons Disease: Infection or Delusion?. American Journal of Clinical Dermatology, 7(1), 1-5.
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Seems that there is some dispute in the Morgellons community of woo-providers as to the origins of the "illness": terrestrial(GM foods, bacterial) or "really-out-there"( chem-trails,nano-technology, self-replicating machino-pods or whatnot).Maybe they can debate amongst themselves!
Years ago, some friends who'd heard about this on the internet asked me to look into it. I usually get tapped for stuff like that because I'm allegedly "the smart one," despite not having any formal scientific or medical training (what I do have is a couple graduate-level courses on research methods, which puts me one up, but boy, do they need help!). What rang my BS detector was that even if you postulated that it was a real disease, the way it got talked about was all wrong. Normally, if you're looking up legitimate information on a disease where the cause is unknown, the write up sort of looks like, "We don't currently know what causes this, but possible hypotheses include [plausible biological mechanisms]," and so on. The model is coherent in its discourse. The writing on Morgellon's resembles an argument in a room full of drunk people.
Also, anything that isn't satire or an episode of The X Files that mentions the word "chemtrails" is probably a good bet for winding up somewhere in Rense's back issues.
Once again, it's one of those cases in which some early media attention has fallen victim to the "present both sides" mantra. Sane folks pointing out things like "no biological agent has ever been shown to make these fibers" or "no biopsy has ever identified a pathological agent" are matched up against people saying "but I swear I'm not crazy" and "lots of people are crazy like this, so it's real!" Hopefully one day the journalism schools will realize that balance-for-its-own-sake makes for poor reporting.
And completely OT, but stimulated by your mention of the zebra: having watched a few House episodes lately, I've started referring to the program as Zebra Hunt.
Number agreement aside, thank you for the first correct use of "begging the question" I've seen this year.
What chance does good reporting stand against increased readership?
You're never going to see headlines about the fact that chocolate pies win over mud pies in taste tests. If you can't fake up some kind of credible conflict (even if it's Simon Legree vs. sweet Nell) you're going to have a yawner on your hands, and the next best thing ("wacko hypocondriacs jump on latest shared delusion") sounds too much like beating up on the victims and will also lose readers.
http://scienceblogs.com/denialism/2008/03/morgellons_scratchpad.php
The truly sad thing, as I understand it, is that delusional parasitosis is a real disease. Or at least, a symptom of a real disease.
Not only that, but there are effective treatments for delusional parasitosis, such as antipsychotics and other drugs, plus psychotherapy.
People suffering from "Morgellons" are actually suffering -- and in many cases from physical, neurological, or chemical disorders that can be fixed -- and they are being kept from receiving effective treatment by people who want to exploit them.
This may be an emerging new respiratory, enteric and brain virus.
Full details here:
http://chronicsorethroat.wordpress.com/
This reminds me. I would love to see sciencebloggers rip into Todd Haynes's film [SAFE]. I thought it was a dark satire about faked diseases at first. Then I listened to the director's commentary. Haynes takes MCS seriously, but I understand it's basically Morgellons disease built around 'industrial chemicals' instead of parasites.
There's a bit of similar analysis of the more recent Stricker/Savely paper here:
http://morgellonswatch.com/2007/10/30/morgellons-disease-the-mystery-un…
We have a contender, folks! Niels Mayer is the newest contestant in the Trollympics!
He started off with a strong, but dated, "Nuh-uh. You're the denialists" attack, and segued into anecdotal "evidence" with "Big Pharma" overtones. He's going for the triple!
Stay tuned for the next attempt at an argument from our new contender!!
There's a bit of similar analysis of the more recent Stricker/Savely paper here:
http://morgellonswatch.com/2007/10/30/morgellons-disease-the-mystery-un…
Please talk to Dr. Randy Wymore at Oklahoma State University before you make judgements on morgellons.
http://www.healthsciences.okstate.edu/morgellons/index.cfm
Here's my opinion of Wymore---what a friggin' idiot.
http://scienceblogs.com/denialism/2008/03/morgellons_scratchpad.php
Dr. Wymore is highly respected and supported by the University of OK; calling him "a friggin' idiot" is not exactly a persuasive argument.
I am not going to repeat Dr. Wymore's findings; they were determined utilizing the services of the Tulsa Crime Lab and FBI Data Base. It is crucial to go to his website and read his work before rendering any judgements.
It is the true horror of the SIGNS and symptoms that make it seem unbelievable, but the tide is finally turning on this nightmare. I recently attended a meeting with several community MD's (one from the area Health Dept) where Morgellons was presented and discussed. After reviewing the materials presented, there wasn't a disbeliever in the group. I don't know whether they were able to sleep that night, but they KNEW something new and horrific was spreading around the globe.
Hey Niels" ol' buddy ol paL
--These folks are pretty smart cookies pretty full of themselfs I'd say with their opinons and all siteing this and that --When they don't have to live with this disease first hand and deal with the lack of careing of the pill pushers ( some might call them Doctors)
Pretty hard to get folks to believe you once one of those High Strung pedagreed pooch Doctor's has put the dreaded crazy lable on you as a standerd issue--Guess they have done their work with this crowd
I'd just like to say you don'know till you've been there and you guys have not been there I guess its because your all still young and full of cum---and he-hee
If I may interject, my critique of Wymore as an idiot is based on his "work"...read the link.
Additionally, if a commenter wants to prove their sanity, they may wish to at least read "Sanity for Dummies" or some such in order to learn how to pretend to be sane.
Dr. Wymore is highly respected and supported by the University of OK; calling him "a friggin' idiot" is not exactly a persuasive argument.
I am not going to repeat Dr. Wymore's findings; they were determined utilizing the services of the Tulsa Crime Lab and FBI Data Base. It is crucial to go to his website and read his work before rendering any judgements.
It is the true horror of the SIGNS and symptoms that make it seem unbelievable, but the tide is finally turning on this nightmare. I recently attended a meeting with several community MD's (one from the area Health Dept) where Morgellons was presented and discussed. After reviewing the materials presented, there wasn't a disbeliever in the group. I don't know whether they were able to sleep that night, but they KNEW something new and horrific was spreading around the globe.
What on earth are you intending to communicate? Shall I post some links on "effective communication"
"Additionally, if a commenter wants to prove their sanity, they may wish to at least read "Sanity for Dummies" or some such in order to learn how to pretend to be sane."
I am not going to try to convince you of anything as your mentality is speaking so loud that you'd never hear a word. There is something that I have learned in my long life and career as a mental health professional. When someone is as seemingly convinced as you appear to be, I remember Shakespeare: "Me thinketh thou dost protest too much". Of course that begs the question "WHY"?
First, you misused the term begging the question, second, you seem to be quite unwilling to either read or address substantive issues. Interesting.
"there's errors in thinking"
There is errors in conjugation.
Sheesh, I go away for a couple hours, and ALL the crazies come out of the woodwork!
@Claire: Learn what is, and is not, an effective argument. You're doing it wrong.
@Ant: Sane? You're doing it wrong. Crazy is as crazy does... *THAT* you're doing right.
There is zero evidence that Morgellon's is anything more than delusional parasitosis. If there were any evidence, all you would have to do is show us, and we would believe. That's how evidence works in the real world. Made up stories, anecdotes, and "yer jest a bunch of pill pushers ya doctor you!" does not constitute evidence.
Delusional parasitosis is not the end of the world. It is treatable with drugs and therapy. Try it out. Hunting for zebras will only distract you and your primary care physician and waste time, money and resources.
Spend 3 years screaming for the rights of these sufferers,
look at the Birdmite websites, Lyme Websites. Spend days talking to true sufferers on the phone. Fund your own observation, go on television in Miami with sufferers. Come to Florida and I will take you on a journey to the homes of these sufferers. I also attended a meeting here in Florida with 3 Doctors present, with photos of organisms and fibers extracted from sufferers. Photos of their ravaged faces and bodies, Nurses, Doctors, Chemical workers, HASMAT workers.
Tell me this doesn't exist and I do not even have this crap. After you have talked to hundreds of sufferers and heard how they are treated, photographed their ravaged bodies....THEN TELL ME THIS IS NOT REAL.
Okay...
THIS IS NOT REAL!
Delusional parasitosis. True believers, er, sufferers, or not, when you hear hoofbeats, think horses.
If you have any, you know, actual evidence, feel free to post it or a link. Anecdotes are useless.
All I can say, if that is the worst paper you have ever read, you have lead a very sheltered life.
I have posted my own take on Morgellons. I think it is low NO with the characteristic target tissue being the skin. The skin is a big organ, so when it experiences low NO the effects can be pretty severe. Low NO turns up the gain on the immune system and makes mast cells hypersensitive. Turn the gain up to 11 on a 10 point scale and mast cells degranulate even with no stimulus. Degranulating mast cells release stuff that makes adjacent mast cells degranulate, if you get propagating waves of degranulation, that feels like creepy crawly nasties moving in the skin.
A major triggering stimulus for mast cells is serotonin. I think that is why SSRIs are effective treatments for most causes of chronic itching, as in primary biliary cirrhosis and end stage kidney failure (which are also caused by low NO) The SSRIs force a change the regulation of serotonin sensitivity. Turn the gain down to 8 or 9, and the creepy crawly feelings go away. Turn it down to 4 or 5 and the itching goes away.
http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory…
PalMD,
Some questions for you.
Why?
Why pick on sick people who's point of view challenges your own?
Is there a philosophy that attempts to dispel discussion and make opinion conform to the dominant paradigm?
Is this philosophy known as Fascism?
In the DoP literature (there isn't a lot to review) when were 'fibres' first mentioned? (not lint - fibres)
In the paper: "Morgellons disease: A rapport-enhancing term for delusions of parasitosis .
Journal of the American Academy of Dermatology , Volume 55 , Issue 5 , Pages 913 - 914
J . Murase , J . Wu , J . Koo
the authors put the proposition that self -proclaimed morgellons patients should initially be indulged their belief that this is real as a method of enhancing rapport (and presumably trust) with the patient so as to better steer them into accepting that their condition is in fact delusional parasitosis. Would you consider such dishonesty ethical?
What percentage of a doctors studies are devoted to ethics?
How common is misdiagnosis in the medical profession?
Ever heard the expression: "Doctors bury their mistakes"?
Given that we live in an adaptive, evolving environment when did medical science manage to quantify all disease and illness?
to paraphrase Shakespeare;
Doctor: O day and night, but this is wondrous strange!
Patient: And therefore as a stranger give it welcome.
There are more things in heaven and earth, Doctor,
Than are dreamt of in your philosophy.
Hamlet. Act I, Scene V
PS: May I suggest an activity in humility you might find useful.
Go to a shopping mall with a clipboard and pen, pretend you are doing a survey for a marketing company (leave your stethoscope at home) and ask the general public what they think of doctors and the quality of health care. You might also like to ask how often they have been to a doctor and been out of the consultation within three minutes with a script for the latest antibiotics in their hand. You could also include a question that asks if people consider antibiotic resistant illnesses are caused by doctors willingness to dish out antibiotics at every opportunity. And then there could be a supplementary question about whether it is ethical for doctors to accept gifts from drug companies and if the proferring of these gifts influences a doctors treatment options?
Should you carry out this exercise you might be astounded to find that the only people with a high opinion of the medical profession are the medical profession! Decades of being treated like children, dished out this weeks trendy pharmacuetical in lieu of a thorough investigation and being pushed through consults so doctors can acheive targets has made many people very cynical of the medical profession. And deservedly so...
As a friend of mine puts it; "If you have a broken bone sticking through your skin, go to a doctor. If you have anything less obvious wrong with you, dont bother because they are just guessing."
You are quite misguided, but you appear to be misguided for the right reasons, that is, out of a sense of compassion rather than out of a sense of greed. I'll explain a little, and I have a more detailed explanation for you at another time. First, I'll direct you to a prior post.
This begs the question. Do I really do what you allege? Or do I seek to protect people from quackery in favor of a science-based approach to healing?
That is a blatently riduculous non sequitor. Some things are simply correct, in that they conform to reality. Some are not. That isn't fascism, that's truth. Don't abuse Khun, and don't go all Godwin on us.
Wow. Most doctors attempt to form a rapport with patients. Forming that rapport should not involve feeding delusions.
65.823 percent
Pretty common, depdending on the condition...but there is a science-based approach to diagnosis, and it doesn't include making things up.
Yes. It's silly.
Huh? This is a doozy of a logical fallacy---because we don't know everything, we know nothing. That makes no sense.
PS: May I suggest an activity in humility you might find useful.
Go to a shopping mall with a clipboard and pen, pretend you are doing a survey for a marketing company (leave your stethoscope at home) and ask the general public what they think of doctors and the quality of health care. You might also like to ask how often they have been to a doctor and been out of the consultation within three minutes with a script for the latest antibiotics in their hand. You could also include a question that asks if people consider antibiotic resistant illnesses are caused by doctors willingness to dish out antibiotics at every opportunity. And then there could be a supplementary question about whether it is ethical for doctors to accept gifts from drug companies and if the proferring of these gifts influences a doctors treatment options?
Non sequitor
Your entire statement is a non-sensical (but perhaps well-motivated) rant about...about...
Shorter Dr Duck:
"They sure sound like they're sick... you're just mean! You and your facts... meanie!"
Again, if there is a shred of real evidence that Morgellon's is not just DP, let's see it. Until then, you're hunting zebras.
LanceR
You are missing the facts entirely. If you mention Morgellons-like symptoms, doctors diagnose you as DOP without a physical exam and refuse to test for anything. How is a new disease to be investigated if doctors are already convinced it doesn't exist? They can't find what they refuse to look for. And why do doctors do this - could it be they read blogs and get their info from the internet? Is this a mass delusion on the part of doctors spurred on by internet use?
I can put oil on my skin and small balls of fuzzy fibers extrude from my pores. All of my friends and family, none of whom have medical degrees, are fascinated by this display and agree that SOMETHING is very wrong with me. Any doctor I've offered to do this demonstration for has politely declined my offer, then given me a prescription for pysch meds.
LanceR oops sorry for offering you another useless anecdote....but I only know my own experiences....I'd love to participate in a real medical research project on Morgellons.
Oh, that's right, Morgellons is a delusion, so we don't need real medical research....
When an amputee "feels" pain in the limb that has been amputated is the amputee called "delusional" because it is pretty obvious that the missing limb can't be causing pain because it isn't there? Is the feeling of pain in a missing limb called "delusional limb pain"? No, it is called phantom limb pain. Are individuals with phantom limb pain referred for psychiatric evaluation? No, they are not because there is sufficient experience with amputees that phantom limb pain is known to occur not infrequently.
An individual with phantom limb pain who insists that his/her amputated limb is still present and is the cause of his/her pain, is delusional. Such a patient could be termed to have delusional limb pain.
Is the itching associated with primary biliary cirrhosis called delusional itching? Can the itching of PBC be treated with antipsychotics?
If the fibers were actual parasites, it is not possible for a competent analysis of them to not absolutely prove that they are actual parasites. To not find parasites after a competent examination looking for them is to rule out actual parasites. To insist symptoms are caused by parasites after parasites are ruled out is analogous to insisting that phantom limb pain occurs because the absent limb is still present.
It is unfortunate when subjective symptoms (which may or may not be real, only the individual feeling them can know if they are real or not) are taken as signs of delusion simply because there isnt an identified cause.
In the case of delusional limb pain, the treatment should be along the lines of how phantom limb pain is treated. If the phantom limb pain is resolved, the delusion that the absent limb is still there and is causing the pain becomes moot.
The wrong way to treat delusional limb pain would be to humor the patient and pretend to buy into their delusion that their limb is still there and do all sorts of treatments on the absent limb, imaginary injections into empty space, imaginary bandages, imaginary massage, imaginary salves. These treatments could be quite lucrative for the imaginary health care provider (aka quack) that is providing them. That is abusive exploitation of a vulnerable patient.
It is no less abusive to treat people who think they have parasites in their skin which are not there as if they do have parasites in their skin. If a patient does have parasites, those parasites need to be identified and effective treatment commenced. If they do not have parasites, the source of the symptoms needs to be identified in case there is other effective treatment. In the case of PBC, there are treatments that reduce itching, including SSRIs, and ursodeoxycholic acid.
See, this is the problem with anecdotal evidence. If a person is suffering from delusional parasitosis how can we evaluate their claims? Delusional people are often very persuasive.
Still delusional, though.
Niels, the object is not to prove or disprove that morgellons is a form of DOP. The point is that morgellons is probably not a single entity, that most of the findings are more easily explained by known problems other than morgellons, and that there are some DOP patients who have latched onto morgellons.
The burden of proof is on the one proposing the new, improbable disease, for which, so far, no real evidence exists.
Niels -
I don't know whether you watched the discussion of Lyme Disease in Congress a couple of weeks ago, but it was a rather heated discussion. One of the Congressmen used the word "cover-up" twice. It has been called the fastest growing epidemic in the US, and a far more virulent strain is spreading through Europe. If, in fact, Lyme is a precursor condition to Morgellons, then Morgellons is just getting started.
We do know that there are reported cases of Morgellons on every continent in the world, in every state of the union, and growing daily.
Another finding is that in at least one study, agrobacteria was found in all Morgellons victims but in none of the controls who did not have Morgellons (Citovsky). What role does it play? In GMO food, it is responsible for gene transfer to alter the target crop. Is it altering the genetics of Morgellons victims?
These are the questions that need to be investigated, and quickly, without wasting another moment on the foolish efforts to deny the existence of this affliction.
I find it annoying to have to pre-digest for "palMD". Dr. Wymore receved samples from all over the country, people who did not know each other, and samples he collected himself (along with Rhonda Casey, MD) from patients seen in the clinic at OSU. All these fibers were similar to each other, BUT DID NOT MATCH ANY OF THE 880 FIBERS IN THE FBI DATABASE. Furthermore, some of these would not melt until they reached 1700 degrees F (clearly NOT textiles), and their chemical composition did not match any of the 90,000 substances in the FBI database. These analyses were done in cooperation with the Tulsa Crime Lab.
The people wasting their time trying to "debunk" a condition that is, beyond a shadow of a doubt, very, very real and even more terrifying, need to open their eyes - and their hearts - and put their efforts into solving this.
Claire
This idea that nobody ever checked for actual parasites is, to put it bluntly, bullsh*t. These patients have been from doctor to doctor to specialist to quack hunting for a diagnosis that meets their schizoid needs. The fibers have all been found to be perfectly normal, and the evidence points to the wounds being self-inflicted.
Dealing with a delusion is tough. Often the patient lashes out, calling you a "fascist" or "mean-spirited and narrow-minded". We have to just remember that they are suffering from a very real disease... one of the mind.
We're not angry with them. We empathize, and try to help them. Of course, that help is what makes them angry.
We are past "studying" this non-disease. There is no Morgellon's. There are no parasites. It's been done. Morgellon's was made up out of whole cloth from one ancient report that may or may not have been accurate. Now I see that it's blamed on everything from Lyme disease, GM foods, electrical sensitivity and aliens? Get a grip people. It's a delusion. Is it any surprise that some people fight desperately to cling to their delusions?
In the land of the blind, the one eyed man is torn to shreds for describing what they would see if they would only open their damn eyes and look around, you're not blind, dammit!
PalMD
Thanks for your response...while I'll acknowledge my arguments do not necessarily conform to the parameters of formal debate I do nevertheless believe they adequately communicate my point of view. To dismiss them with pompous comments such as "non sequitor", reflect an arrogance apparently pervasive in your profession. In that spirit I'll disregard your "non-sensical" comments and respond to your follow up points. Excuse any lack of reverence....
"Do I seek to protect people from quackery in favor of a science-based approach to healing?" You probably do, at least I really hope so, because there are so many bad doctors around who arent interested in healing, communicating or in anyway connecting with their patients.
"Some things are simply correct,...."
What? your opinion?
"...in that they conform to reality..."
Your scientific reality, as it stands at this point in time?
"Most doctors attempt to form a rapport with patients..."
Dr Koo is a major driver of the "Morgellons is DoP" viewpoint and believe me the paper quoted proposes a variation of rapport that offends ethical standards. Read it and weep...palliative cynicism at its finest...
"65.823 percent" (of a doctors studies are about ethics)
Facetious and I'll respond in kind.....and the other 35% would be golf lessons and tax minimisation?
"Pretty common, (misdiagnosis) depdending on the condition...but there is a science-based approach to diagnosis"
It was incompetence but it was scientific imcompetence!
"Logical fallacy"
Thank you. I'll take that as a compliment as you got it half right
But in this case, (Morgellons) you guys have got it wrong...i cant prove it, i can only feel it in my gut and in the weird, unbelievable things that are happening to my body. I ask doctors to look, to explain but i dont get explanations and I rarely get an examnination. My specific questions draw vague responses. In lieu of a clear and unequivical explanation for my experience of Morgellons, I am asked to accept that I have developed, what until reccently, was an obscure mental illness. This is the shared experience for all Morgellons people. I can't prove it I only experience it. If you guys could just dig up a couple of cured morgellons people for us...you know real life testimonials..."I had Morgellons, I joined the support groups, i lived the life...but thanks to Brand X - legal crack - now im cured of Morgellons and have a happy life drooling down my shirtfront."
Anyway that's enough art for you lot....
"The fibers have all been found to be perfectly normal".
Cite ONE SINGLE STUDY - not "opinion" from "doctors" who have never even examined these patients or the fibers, PROVING that they are "perfectly normal". The fact that it HAS been proved (as shown in Wymore's work) that these fibers are unknown, unlike anything seen before, is unquestionable.
How long can you keep ignoring or disputing this without providing a single scientific study without sounding suspicious yourself?
Nevermind all the other co-infections and findings that cluster around this diagnosis being absolutely real. That one fact alone - the mystery of what these fibers are - itself is proof enough.
I challenge every one of the detractors to put their money where their mouths are - get the $50,000 together and conduct a study that is overseen by a panel of scientists who do not have a hidden agenda. PROVE your contentions instead of calling Dr. Wymore a "friggin' idiot" and people who are suffering beyond description "delusional". Those are not arguments or proof...it's what children resort to... name-calling. Grow up and do it RIGHT.
I have seen Accutane totally mis-prescribed for what I'm about to tell you, and the reason antibiotics work is that parasitic collembola love eating skin bacteria especially 'Leclercia Adecarboxylata' (man made oil-slik eaters)! In 2004, the National Pediculosis Association reported Collembola in skin scrapings collected from 18 of 20 research participants in its study published in the Journal of the New York Entomological Society at http://www.headlice.org/news/2004/delusory.htm. They're here and they're being totally misdiagnosed! They are very, very dangerous. If they have no ability (or need) to feed as human/animal parasites (as all the so-called scholarly scientists, dermatologists, and psychiatrists insist) why would their digestive juices contain acetemenephenol. So armchair speculate some more! When one feels a sharp, stinging skin pain at night with burning and itching yet a few minutes later it subsides, (it's because Tylenol is a slow acting pain killer) one has been attacked and invaded. They are ubiquitous (everywhere-enormously) and are one of the main causes of Morgellons. 'S.C. Johnson' pure "NATURAL PYRETHRIN" (from the pyrethrin tansy) bug bombs are their only enemy, besides vacuum sealing everything (bedding, clothes, books, computer components etc. for at least 3 full days) and plastic-ing off EVERYTHING to be scrubbed down regularly. They (sirius) are quickly becoming a microscopic plague. They're also immune to oil based pesticides because they have evolved to eat man-made, oil-slick-eating bacteria (Leclercia Adecarboxylata) which is NOW all over our skin. We're all being attacked down here in FL whether we know it or not. They like to keep low under-hair profiles. Shave and you'll disturb many! It has become a plague! These tiny creatures cause acne, skin cancers (their digestive juices contain BENZENE!) and most other common forms of skin disease, dandruff and atheletes foot. All of the over the counter topicals contain powerful pesticides. Research their formulations (pyrethrione-Zinc for instance).I've noticed one place where they can be detected within a few minutes , your local video rental store! Keep track of your skin within 5 to 10 minutes of handling older video cases. If any pimples or itching (irritation) occur as you are driving home, have some natural pyrethrin lotion (natural pyrethrin extract combined with any thick over the counter lotion) and dab it on. Keep old CD cases in plastic bag and handle quickly, efficiently and carefully! If I didn't know any better, I would be thinking your authors work for or in the pharmaceutical/medical industry and are spreading their usual BS. I have more tips. Contact me at Dhfade@yahoo.com
OMNEG. This is the sort of tinfoil-hat insanity that these things inevitably lead to. "BENZENE!" Aah. Let us all run away from these (non-existent) bugs. I'm so scared now.
Re: fibers... show me one single shred of evidence that these "mystery fibers" are not self-inflicted. Show me one single shred of evidence that the sores are not self-inflicted. Show me one single shred of evidence of any infection. Oh, that's right... there isn't any. Delusional people do delusional things. "Keep old CD cases in plastic bag..." Yikes.
LanceR
What is wrong with you? One single shred of evidence that these mystery fibers are not self inflicted? That doesn't even make sense in the context of the fact that they can't even be identified!!! Please read my post above re: Wymore's work. THAT is your proof!.
Why are you so determined to deny the hard science and proof of the existence of these unidentifiable fibers? You are not only completely unconvincing, but your motives are highly suspicious.
Dr. Duck said:
"Should you carry out this exercise you might be astounded to find that the only people with a high opinion of the medical profession are the medical profession!"
(Raises hand) Um, please allow me to weigh in on the side of non-medical-professionals with a very high opinion of the medical profession, or at least of the numerous medical professionals who understand science and logic.
Since this thread has been thoroughly Godwin'd already, perhaps this admission will earn me a diagnosis of Fascitis? ;D
As usual, blah blah blah with no actual evidence.
Face it, people. Delusional people are, well, delusional. This is not a value judgment. This is not "name calling". This is not a punishment.
Wymore is completely discredited. If this "Morgellon's" bullshit is linked to Lyme disease, then why a new moniker? Why not simply "Lyme Derangement Syndrome" or something related?
I will tell you why. In uncertain and insecure times some people seek comfort from whatever woo they believe in. Hypochondriacs in search of a disease find some doctors who think they may have a "new" disease to treat. You accuse us of being "big Pharma" but never look at the quacks who want you to take all sorts of garbage with no proven
effectiveness.
On a side note, Niels... you really need to seek help. This blog is "here to spread the 'corporate' solution to complicated health issues"? Really? You really need to learn to read for comprehension. Perhaps some Risperidone or Clozapine and some therapy? Cause damn you're paranoid.
Count me in with Perky Skeptic. Between their moves and mine, I've had several doctors with whom I've been highly impressed and none who I felt were unsympathetic or dismissive. And this is with me having a couple of conditions that are unusual. Not only have my doctors not questioned that these conditions existed, but they've been up to date on treatment options and, frankly, more anxious to follow up to make sure everything is working than I've been. I'm just not buying the doctors-as-corporate-shills argument.
Dear doctors and their supporters,
From what I can gather you guys figure that Morgellons Disease is usually, but not always DoP. And that because DoP traditionally has a poor treatment response a community of delusional people has formed around the concept of Morgellons as a novel entity. They have done this to seek validation for their collective delusion.
Because they are profoundly deluded, they have found uniqueness in common environmental contaminants and put forward these contaminants as evidence of this novel entity.
As stated above, delusional people can be very persuasive. Apparently within this burgeoning subset of the mentally ill this particularly holds true. In a relatively brief amount of time they have managed to convince media, civil bureaucracy and elected officials that there is enough evidence for continued attention and investigation.
Not satisfied with this level of activity surrounding their spurious cause they have continued to spin their alluring tale of a new disease and duped State health departments, Universities and a number of private companies into jumping on their deluded bandwagon.
And this is despite the oft published advice of medical "experts" that this is all a collective delusion. Quite a folie wouldn't you say?
Now we morgellons people may be simple folk with little understanding of medicine, or debate or even how to put our position clearly. We aren't academics or professionals and we are not equipped to drive discussion or investigation. We, to a person, can't believe what has happened to our lives and equally can't believe why doctors so steadfastly refuse to just look and follow through on what they see.
It seems anyone who wants to look can see these fibres in on and under our skin. Except doctors. To you guys they are invisible. Respectable professionals with no vested interests have looked at this and found anomalies, but you guys want to hang on to DoP. Why is that? It's ok, that's rhetorical, no need to trot out the old shutups and putdowns.
The medical profession is just missing this Morgellons thing so badly that if stupidity wasnt a valid excuse the response would be inexplicable. And I know someone stated way way back that they do this (denounce morgellons) to protect the DoP community from quackery. Frankly I'd feel more protected if you docs would just not comment until you have actually treated someone with this and given them the rigorous workup a diagnosis of exclusion such as Dop requires. Unless you comment from the perspective of experience as we do, you're arguments, no matter how well framed, mean nought.
The secret of success is sincerity. Once you can fake that you've got it made.
- Jean Giraudoux
http://scienceblogs.com/denialism/2008/05/connecticut_attorney_general_…
Nice conflation of Lyme disease (with an actual parasite that can be located in the sufferers) and Morgellon's (with "mystery" fibers that usually turn out to be clothing and no parasite).
Why do Morgellon's quacks refuse to submit actual evidence? Why do they insist that they are being ignored and abused? Perhaps they just don't like facing the fact that they suffer from a delusion? Hmm...
MRSA is easy to diagnose. You take a culture, it grows, you test it with antibiotics, it keeps growing, you sequence its 16S rDNA and you have unambiguously identified it as MRSA. An otherwise incompetent resident could do it. A half-way decent undergraduate could do it. A good high school student could do it.
What is the test for Morgellons?
IT CANNOT BE DESTROYED BY FIRE OF 1800 DEGREES AND IT STILL IS THERE EVEN IF YOU PUT IT ON A ROCKET SHIP TO TO SUN!!!11!ONE~~
What is? The paranoia of people suffering from delusional parasitosis?
"Dr. Wymore has been discredited" - by WHOM? Show me something.
And does the same "discrediting" apply to the Tulsa Crime Lab as well as the FBI?
The fiber issue has been proved beyond a doubt, and no matter how many names you call the scientists working with it, that fact will not change.
And how do you account for Agrobacteria being present in Morgellons victims but not non-Morgellons controls? Is Citovsky also a friggin' idiot?
I hate to tell you that you are losing this argument. Everyday more information and credible exposure is occuring - last night's "String Theory" on Discovery Health's "Mystery ER" is just one more nationally televised program (4th this year?) giving credibility to the condition.
Oh - you should let the producers of these shows that Dr. Wymore is a friggin' idiot who's been discredited, and don't believe the Tulsa Crime Lab or FBI.
At this point, you should consider your OWN credibility as doctors if you want to continue having a practice. Denying scientific evidence in order to hurt thousands of people who are already suffering enormously does not reflect well on your character or your abilities as physicians (if in fact you are).
Again, Claire, where's the evidence? You rattle on about denying the evidence that you are all afraid to show. Probably because every time you bring some "evidence" out, it turns out to be lint, clothing fibers, or dog hair. These are all signs of delusional parasitosis. Look it up. Learn something.
Dr. Wymore is a quack catering to people desperate for validation.
Oh, and the Agrobacteria in Morgellon's patients but not in others? Horseshit. Agrobacteria appears to be very nearly omnipresent.
Morgellon's "fibers" appear fairly consistently to be cellulose. You know, cotton?
If there is a single piece of *actual* evidence, why not publish it? Make a big splash! Win a Nobel prize! Why not? Oh. That's right. Morgellon's is a fraud. A hoax. A lie. A delusion.
Is any of that starting to sink in? No? Do you know why that is? Look up "delusional" and you may get an idea of what I'm trying to say.
Once you go Godwin, there's really no turning back. Bye.
Actually, Nil, you have yet to correct anyone.
You have slandered, slavered, and slobbered, but not corrected.
You have accused, abused, and amused, but not corrected.
In short, you should sit back and try to learn something for once. If you, or anyone else, has any actual evidence, produce it. Put up or shut up. What? You can't? Oh. I see. You're a fraud. Duh. We knew that.
The only "hate" going on here is from you and your co-sufferers who get irrational at the first indication that you are, well, irrational. Can you show us *one* single piece of evidence? Anything? Hello?
...and we have subject change! I repeat, we have subject change!
Lyme disease is an actual disease. Chronic Lyme disease is questionable, but the jury is still out. Morgellon's is bullshit. The early cases were tested, and showed no signs of Lyme or any other parasite/fungus/demonic possession/other crazy bugs.
You want to beat the drum for Chronic Lyme disease? Great. Go do that somewhere where they are discussing that. Morgellon's is a myth.
Anonymous said, "Again, why is it that multiple congressional district reps are demanding action on Lyme Disease, and yet, this blog continues to mock and demean Lyme and Morgellons?"
Congress doesn't understand science, and neither do you. After all, they're also puzzling over stuff like stem cells and "partial-birth" abortions with no real understanding of how it all works. They're politicians, and they are pandering to YOU, the noisy people who keep flogging this dead horse.
Just 'cause Congress is crowing over it doesn't make it true.
What was the term someone else used on Orac's blog? Social validation?
Masses cannot endow opinion with veracity. Not you. Not Congress. Not even us. The difference is that we gather evidence from research. So we do not validate, the evidence does it for us.
So gimme a smear, a slide, something better than a fiber.
Why do you continue to deny the collabortion of Dr. Wymore and the Tulsa Crime Lab, utilizing the FBI Database? You have yet to comment on this, except to call Dr. Wymore a friggin' idiot who's been "discredited" and a "quack".
You are the ONLY one I have ever heard call him that. WHO DISCREDITED HIM? SHOW ME!!! And why do you keep sidestepping the Crime Lab and FBI issue??
How did you ever get through medical school? Oh, wait - I know the answer to that. Many doctors, the ones who diagnose from across the room without lab work or ruling out before concluding are....uh....friggin' idiots. So it was probably fairly easy.
We keep ignoring the Tulsa Crime Lab and the FBI because they are irrelevant. Just the same way that we ignore the color of the wallpaper. It has no bearing on the discussion.
Learn to read. Read things that perhaps you don't agree with. Learn to critically think about those things. Expand that into critically thinking about your own beliefs. Don't swallow every piece of crap somebody puts in front of you.
Medical school? What the frak are you blathering about? Just another anti-medicine nut? Face it, sister. Science has certain requirements. Your feelings or beliefs are irrelevant in the face of facts. The fact is, no parasite has ever been found in a Morgellon's "sufferer". The mysterious fibers almost invariably turn out to be clothing fibers. Look up "matchbox sign" before you go any further. Morgellon's was made up out of whole cloth in order to cater to a certain group of hypochondriac patients. It is a sales job.
Good luck, and please seek competent help.
Again you are ducking the issue. How on earth can you say that the Tulsa Crime Lab and FBI Database are irrelevant? The issue of the fiber composition is BASED on them! I find it incredulous that you can continue to ignore something so concrete and central to the discussion, instead resorting to insults and put downs.
Rise to the occasion and explain why they are irrelevant. And while you are at it, provide evidence that Wymore fas been discredited.
You are projecting. Proof is provided and you ignore it outright or call it irrelevant. When I ask you to provide proof of your allegations about Wymore's reputation, you fail to do so. You are treading on shaky legal ground.
Pipe down, Claire. There's no shaky legal ground. The FACT is that Wymore is not in any way a medical expert and as far as I can tell from reading his own writing, has not done any actual clinical work. Fiber analysis is irrelevant. Pathology is relevant. If there is something to see here, simply get a real biopsy and let's go from there.
Wymore's definition of morgellons is non-sensical, his approach to the disease is non-sensical. It is not wrong to say that he appears to be in way over his head.
Is there any organic substance that has a melting point above 1800ºC (honest question)? And at what temperature do we cremate bones? And wtf is up with this claim that the fibers are something mysterious and can withstand quadruple-digit heat??? And can't they do a chemical analysis with mass spec? What about Borrelia? The Morgellons AND the Auties have latched onto this one. Why would there be any reason to believe that Borrelia does all of these things? And if the hypothesis is Borrelia, then why the hell would someone try to use the Budwig Protocol (nevermind that it's a lot of woo) since that's supposed to fight cancer (woo -- we know it doesn't). Lastly if it's a mystery parasite, we'd see unusual IgE. But that hasn't been seen in Morgellons people.
I'm seeing more shifting, moving goalposts here than that time I got really hammered at the football game when I was an undergrad.
I postulate: space aliens.
"In order to wear the mantle of Gallileo, it is not sufficient that you be persecuted. You must also be right."
Again, just because you are obsessed with Lyme disease does not mean that everything can be lumped under Lyme disease.
If you are right, why not publish your evidence? Win the Nobel prize! Become world famous as the one who proved Morgellons (and "everything from Alzheimer's to Restless Leg Syndrome, Lupus, ALS, MS") to be Lyme disease? To paraphrase Dawkins, you can't because it's a fraud.
Morgellon's is bullshit. Psoriasis is not Lyme disease. Rosacea is not Lyme disease. You are "not even wrong."
Posting anonymously, then quoting your own blog with your *REAL NAME*?
Epic fail.
Vaccines do not, have not, and never will cause autism. The latest research seems to point to a genetic component. The vaccine/autism garbage is simply an outgrowth of "the gubmint can't tell *me* whut to do!" crowd. There is no, zero, zip, swabo, evidence of even a correlation between the two, despite a great number of highly motivated people searching for one.
And on another note, how about those "...bioweaponized and genetically modified organisms including borrelia, Mycoplasma, HIV, West Nile..."? Is that still your position?
Do we have a 'bingo' yet?
Alas, all you have done is implied that there may have been some inside dealing on one panel. You still haven't proven anything, nor have you actually offered any evidence.
How about those "...bioweaponized and genetically modified organisms including borrelia, Mycoplasma, HIV, West Nile..."? Any of that working out for you?
You're delusional.
...And after following the links Niels Mayo OOPS! "Anonymous" provided, we find that the pdf is simply an agreement between the Connecticut AG and the IDSA whereby the ISDA agrees to review its findings. How'd that come out?
Do you even read the crap you post, or do you just copy and paste gibberish someone told you was "rilly awesome, dude. This totally blows them away!"?
Delusional, I tells ya!
Woohoo! You've found another f*cking lunatic who shares your delusion! Congratulations!
Anyone who says that "HIV AIDS, HIV virus doesn't really kill people." is as delusional as they come. Using "Big Pharma" is another clue that they don't know what they are talking about.
Keep babbling, Niels. You're still delusional.
Anyone hear whistling? If a moron farts in the dark, does he still stink?