Morgellon's "publicly acknowledged" by NIH National Library of Medicine?

jvnk08

Senior Member.
Anyone else seen this? I see it often touted as confirmation that Moregllon's is real.

http://www.nlm.nih.gov/cgi/mesh/2013/MB_cgi?mode=&index=24902&view=expanded

My first though is that it's no surprise it shows up here, after all the NIH did an investigation into Morgellon's, did they not?

Secondly there is no information beyond "An unexplained illness which is characterized by skin manifestations including non-healing lesions, itching, and the appearance of fibers. There appears to be a strong association with LYME DISEASE". I would hardly call this acknowledgement of anything. Does anyone know the admission criteria for MeSH? I looked around but couldn't find anything.
 
It was the CDC who did an investigation. They found (Jan 2012):


Background

Morgellons is a poorly characterized constellation of symptoms, with the primary manifestations involving the skin. We conducted an investigation of this unexplained dermopathy to characterize the clinical and epidemiologic features and explore potential etiologies.
Methods

A descriptive study was conducted among persons at least 13 years of age and enrolled in Kaiser Permanente Northern California (KPNC) during 2006–2008. A case was defined as the self-reported emergence of fibers or materials from the skin accompanied by skin lesions and/or disturbing skin sensations. We collected detailed epidemiologic data, performed clinical evaluations and geospatial analyses and analyzed materials collected from participants’ skin.
Results

We identified 115 case-patients. The prevalence was 3.65 (95% CI = 2.98, 4.40) cases per 100,000 enrollees. There was no clustering of cases within the 13-county KPNC catchment area (p = .113). Case-patients had a median age of 52 years (range: 17–93) and were primarily female (77%) and Caucasian (77%). Multi-system complaints were common; 70% reported chronic fatigue and 54% rated their overall health as fair or poor with mean Physical Component Scores and Mental Component Scores of 36.63 (SD = 12.9) and 35.45 (SD = 12.89), respectively. Cognitive deficits were detected in 59% of case-patients and 63% had evidence of clinically significant somatic complaints; 50% had drugs detected in hair samples and 78% reported exposure to solvents. Solar elastosis was the most common histopathologic abnormality (51% of biopsies); skin lesions were most consistent with arthropod bites or chronic excoriations. No parasites or mycobacteria were detected. Most materials collected from participants’ skin were composed of cellulose, likely of cotton origin.
Conclusions

This unexplained dermopathy was rare among this population of Northern California residents, but associated with significantly reduced health-related quality of life. No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation.
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The MeSH entry is from three years before the CDC report, and is likely just a classification entry to cover the work of Morgellons promoters like Stricker.
 
Anyone else seen this? I see it often touted as confirmation that Moregllon's is real.

http://www.nlm.nih.gov/cgi/mesh/2013/MB_cgi?mode=&index=24902&view=expanded

My first though is that it's no surprise it shows up here, after all the NIH did an investigation into Morgellon's, did they not?

Secondly there is no information beyond "An unexplained illness which is characterized by skin manifestations including non-healing lesions, itching, and the appearance of fibers. There appears to be a strong association with LYME DISEASE". I would hardly call this acknowledgement of anything. Does anyone know the admission criteria for MeSH? I looked around but couldn't find anything.
How would there be any association with Lyme Disease . . . I see no similarities . . . except for the presence of skin lesions and the controversial history . . .
 
How would there be any association with Lyme Disease . . . I see no similarities . . . except for the presence of skin lesions and the controversial history . . .

Stricker is a believer in "Chronic Lyme", which is a similar "poorly characterized constellation of symptoms". He likes to diagnose any malaise as Lyme disease by testing until a positive result shows up, and then sells them massive extended course of antibiotics. So there's a similar client base of idiopathically sick people who are looking for a reason for their sickness. People who think they have Morgellons also frequently think (or are encouraged to think) they have Chronic Lyme. They don't have actual detectable Lyme disease.

Example text from one advocacy group:
http://www.thecehf.org/the-cehf-brochure.html
Physicians and patients are both bewildered about
medical management of MD. Thus far, some Family
Practitioners have tried to help patients. However,
since 97% of MD patients have evidence of coexisting
Lyme disease, Lyme Specialists (LLMDs),
mainly have taken Morgellons seriously.
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LLMD = Lyme Literate MD, i.e. an MD who believes in prevalent chronic Lyme
 
NIL try to classify anything that can be named - whether it is real or not.

They alsohavean entry for parapsychology:

Scope Note: Branch of psychology that deals with paranormal behavior and events such as telepathy, precognition, and clairvoyance, which are not explicable by present day "natural laws".
Entry Term: Clairvoyance
Entry Term: Extrasensory Perception
Entry Term: Psychic Research
Entry Term: Psychical Research
See Also: Spiritual Therapies
See Also: Telepathy
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I think chronic lyme disease would fall into the category of scientifically controversial, but not bunk. Wikipedia, for what it's worth, is ambivalent on this. http://en.wikipedia.org/wiki/Lyme_disease

I'd not exactly call it ambivalentL

The term "chronic Lyme disease" or "post-Lyme disease syndrome" is not recognized in the medical literature,[223] and most medical authorities advise against long-term antibiotic treatment for chronic Lyme disease, [85][224][225] however, The Center for Disease Control does state that "approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called 'chronic Lyme disease,' this condition is properly known as 'Post-treatment Lyme disease Syndrome' (PTLDS)"
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It's controversial, but the Chronic Lyme lobby is very much in the minority.
 
I have a friend who has had it for many years, and she vacillates between simply trying to live the most healthy lifestiyle possible, and going to someone new with a new treatment. She tried a nasty quack remedy called colloidal silver, which can turn the skin permenently gray. Fortunately, she didn't do that very long. I don't think anybody is recommending antibiotics at this stage. Whether it is ever found to be "real" or not, it deserves more intellectual empathy than morgellons because it started with a real infectious disease.
 
The problem with a doctor who takes advantage of patients by testing until a false positive shows up is that not only is the doctor making a diagnosis simply for the money, he might be mistreating the patient if he overlooks something very serious like a brain tumor or just a mental situation.

I once thought I may have had Lyme, because in my area over the course of a summer it is not uncommon to have hundreds of tick bites, mainly from tiny nearly invisible juveniles (seed ticks). I had low grade fever/fatigue for several weeks before I sought treatment. Turned out to be Tularemia(rabbit fever) a completely different tick borne disease. Cipro cleared the symptoms in 24 hours.
 
I have a friend who has had it for many years, and she vacillates between simply trying to live the most healthy lifestiyle possible, and going to someone new with a new treatment. She tried a nasty quack remedy called colloidal silver, which can turn the skin permenently gray. Fortunately, she didn't do that very long. I don't think anybody is recommending antibiotics at this stage. Whether it is ever found to be "real" or not, it deserves more intellectual empathy than morgellons because it started with a real infectious disease.

Regardless of if it's Chronic Lyme or Morgellons, the people suffering are still individuals, and they are still suffering. I think they both deserve intellectual empathy. Even the crazy people who think they get ill the second they see a contrail - they are still really suffering, regardless of the degree to which it's psychosomatic, or not.

People who have a condition like this often (erroneously) frame it as being either one of two things: a distinct treatable disease, or mental illness. Since they know they are not mentally ill, then it must be a distinct treatable disease. That why they like a diagnosis, such as Lyme, or Morgellons, and why they keep going for treatment for that disease, despite the treatments never working any better than placebo (and often worse).

They are really, genuinely sick, but it's not the stark and obvious choice they give themselves. They have, as the CDC put it, a "constellation of symptoms", symptoms that are caused by many different overlapping medical conditions, and symptoms (and conditions) that vary greatly from one individual to the next. Some of these symptoms are from illnesses (and some may even be post-lyme syndrome), some from environmental factors, some just from getting old, and some might even be psychosomatic.

If someone is suffering, then they are suffering, and they deserve our sympathy, they deserve good medical care, they deserve to be treated like people. But we don't need to validate their preferred diagnosis in order to validate their suffering.
 
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