After reviewing the article “Morgellons disease, illuminating an undefined illness: a case series”, two thoughts come to mind:
- Those wanting to better understand this condition (both sufferers and medical professionals) could benefit from collaboration, and
- A team of parasitologists as well as toxicologists could add interpretive insight by reviewing MD data.
There is nothing easy about this condition. It is mysterious, terrifying and destroys the quality of one’s life. No matter the parameters which one looks at Morgellons, as a recent phenomena or as something that has been around for centuries, it has baffled the medical profession. The condition leaves the patient with few answers and the medical professionals, I suspect, frustrated.
I know firsthand that sharing anything related to this condition often leaves you as a target or, worse, feeling unheard. The mix of sufferers and medical researchers makes for a complicated audience. Often when posting my thoughts online, I clarify with, “I’m not a medical professional”; it makes sense that for the sufferer the professional voice has more validity than the nonprofessional. Still, when answers are few, any voice is better than none.
Sometimes misguided anger comes out. I once posted some critical comments towards several medical researchers (and afterwards regretted it). “We all have five fingers” was once a Navajo elder’s way of telling me- we’re all human. We’re all capable of great good but also make mistakes.
I wonder how we could better share between sufferers and medical professionals. I have seen some attempts at online surveys…maybe this could be expanded. Another possibility is a question/answer session with noted professionals working on the Morgellons condition (maybe a monthly or weekly response from various professionals). The voices of the sufferers as well as professionals need to be heard in expansion of collaborative, productive communication.
Given all the challenges, it is still absolutely essential that communication be open and healthy itself. Being able to have a voice and listen to others benefits everyone. Mr. Common Sense recently expressed gratitude for Mary Leitao’s efforts and I second that; she is the reason so many have been able to connect.
Further professional review
Among the sufferers, there appears to be three major schools of thought on the cause of this condition. Many believe it is parasitic, some believe it is a mix of parasitic and toxins, and some believe (as I do) it is the result of toxins.
While the research team that implemented and published this important study have impressive medical backgrounds, I feel more light could be shed on data interpretation with a formal review by a team of parasitologists as well as a team of toxicologist (in fact I think this should happen for any studies with complex MD data sets). While I’m not a medical professional (please remember that), I do think that some of the data patterning such as all having high resting pulse, high miscarriage rate, and some with chronic inflammatory diseases could be interpreted as relating to mercury.
The study was designed to define Morgellons and differentiate between Morgellons and DOP. I think it has better defined Morgellons. The distinction between MD and DOP remains muddy. If it is found that MD is parasitic in nature then the symptoms are parasitic symptoms. If it is found to be the result of toxins, I propose the term Pseudo Parasitic Symptoms (PPS).
The study presented in “Morgellons disease, illuminating an undefined illness: a case series” may provide further insight with additional review of data, both published and unpublished, by parasitologist and toxicologist. While I am not a medical professional (just had to say it one last time), I hope the medical community will be open to suggestions from those who have or had these symptoms.
From Mr. Common Sense
This was submitted by Joseph Keleher who, as far as I am concerned, wrote the quintessential "History of Morgellons Disease" which you can find by clicking on the following link, Morgellons/ Mercury Article. I agree completely with Joe on this post regarding collaboration only he says it with more elegance than could I. As an aside comment Joe stated to me that Heart Palpitations (I just had a very scary bout with them) can be a sign of Mercury poisoning. I Googled it, and indeed, it sure is. Thank you Joe, I’m sure folks will look forward to more of your writing. If the link to “Morgellons disease, illuminating an undefined illness: a case series” doesn’t come up right away, wait 4 or 5 seconds and it will.