Darth Vader : Luke, I am your doctor, you suffer from Delusions of Parasitosis, you are DOP.
Luke: No! That’s not true! That’s impossible.
Darth Vader : Search your feelings… you know it to be true…
All kidding aside this is probably going to be one of my most unpopular posts. This blog post is going to take a hard look at where we are right now as a Morgellons community and it isn’t pretty.
First, let’s take a look at the claim that we are DOP. There is only one reason that claim can continue to be made and that is because we as a community haven’t offered any valid information to the contrary. To my knowledge, there isn’t a single peer review article written by any Morgellons researcher that has appeared in any medical journal along with real results of scientific tests. Correct me if I’m wrong here, but after all these years not a single paper, not one, has been published. And with the red and blue fibers being so easy to obtain and year after year ticking by with no new information it’s nobodies fault but our own. Okay, you could make the argument that doctors diagnose us with DOP from across the room without even looking at us and that would be a valid argument, but that is standard protocol and they are taught that in medical school. Knowing that what do we expect?
There are four blog posts from a guy calling himself PalMD and to be honest I find the arguments going on in the comments on his posts very revealing about the problems we are facing more than anything else I have read. I think a large part of the blame needs to be laid right at our very own feet, and rightly so. Here are the blogs posts (you will learn a lot from both sides if you read the comments)
- Saturday morning reflections
- Morgellons—cranks in search of a disease
- Raise your hand if you just don’t get it
- Every time I think I’m out…
Now, you can go up there and post all kinds of nasty comments and scream from the top of your lungs that this is real, but why bother. Besides, you will only continue to discredit us. If I didn’t have Morgellons myself I would never believe you, here’s why. I would do some Google searches to find out more information about Morgellons and much of that information would be found on Morgellons forum sites. Then, after about 45 minutes of surfing I would walk away with the opinion that “those people” are absolutely certifiable (and I was one of those people once who posted on the forums until recently that played a role). I am not blaming, the fact is what we experience is quite bizarre. I was recently criticized about taking my thoughts to this blog and not posting in the forums as a peer along with others. But the very reason I removed myself from the forums was to maintain some kind of credibility. Surely if you are a Morgellons sufferer and have been to the forums you know what I mean. Much of what is discussed is way, way, way …. out there. Now, don’t get me wrong, one of those “way out theories could be true” but until it is proven having my thoughts lumped in with all the others makes my job harder. The forums do act as a support group and help many get through their day to day struggles which are very real. Some people are no doubt being driven somewhat crazy from being turned away by medical doctors while suffering from such a horrible malady. The reason I have my own blog is so that I am not lumped in with the bizarre conspiracy theories and alike. Am I saying I am smarter than others? Certainly not, I have seen some very smart people posting on the forums that I think have very solid theories. I am trying to stay grounded in the facts the best I can so that we are taken seriously. I think the fact that Dr. Wymore addressed my theories on this blog means enough people found them credible enough to write to him such that he felt the need to address them. If you want to be addressed seriously you have to be able to be taken seriously. I am not a scientist, but I play one on the internet because no other credible information is forthcoming from anyone at all.
Now some of what is said by those who don’t believe Morgellons is real on PalMD’s blog are just cruel for cruel’s sake, and I don’t agree with the comments that attack and belittle Morgellons researchers at all. On the flip side, there are what appear to be personal threats made by a Morgellons sufferer against PalMD which I totally condemn. Those are worse than adhomenum attacks. This person even goes so far as to say he will contact this persons employer. What ever happened to freedom of speech? I certainly will not go up there and comment on his blog, there is no point. However, there is some validity to their arguments. We have no real evidence, zero. Don’t get me wrong, researchers have published articles such as Dr. Staninger who I admire greatly as well as Dr. Wymore but there are no scientific peer reviewed papers with test results and a like with published findings of what is being found in the blood, bacteria, fungi or fibers. Basically, everything that has been said about Morgellons at this point is mere speculation until test results are peer reviewed, duplicated, and validated. How many years has it been and we still don’t know the chemical composition of the fibers? And in today’s world that is just hard to believe.
Now, this might come as a surprise to many of you but currently my hopes are with the CDC. I am learning to check my skepticism at the door and assuming the best out of everyone involved until I find out otherwise. The CDC is likely going to publish real findings including what is being found in the blood work, parasitological findings, and so on and in a peer journal.
There are all kinds of camps and factions that support the various researchers and here is my advice. Whatever horse you are betting on encourage them to publish real results and not just make statements in articles, because these are no more credible than my blog postings. I am not sure why researchers couldn’t enlist a college to have some of it’s students study the fibers, seems like a great little project that could be done for absolutely free by inquiring, bright, young minds. Our house is in disarray and until we clean it up we are never going to be taken seriously. One way would be to destroy the camps, start working together, share findings, and publish real scientific papers. I would help but I am not a scientist. I’m not holding my breath but I hope I am proven wrong. However, I am looking forward to the CDC report. At this time, I see it as our best hope.