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.
 

Mick West

Administrator
Staff member
It was the CDC who did an investigation. They found (Jan 2012):

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.
 

George B

Extinct but not forgotten Staff 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.
How would there be any association with Lyme Disease . . . I see no similarities . . . except for the presence of skin lesions and the controversial history . . .
 

Mick West

Administrator
Staff member
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
LLMD = Lyme Literate MD, i.e. an MD who believes in prevalent chronic Lyme
 

MikeC

Closed Account
NIL try to classify anything that can be named - whether it is real or not.

They alsohavean entry for parapsychology:

 
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Mick West

Administrator
Staff member
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

It's controversial, but the Chronic Lyme lobby is very much in the minority.
 

Steve Funk

Senior Member.
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.
 

Jay Reynolds

Senior Member.
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.
 

Mick West

Administrator
Staff member
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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