Saturday, March 7, 2015

The Fibromyalgia Perplex Comments by C.S. Choe

Ok, here we go!  This is a comment that may get this discussion/debate going in reference to C.S. Choe's comments on The Fibromyalgia Perplex (  I have posted the part of Choe's comment that is representative of the entire comment.  If you are interested in the entire comment please request this and I will e-mail you the comment.

" I have been fascinated/angered by Fibromyalgia since finding out about it in the early 2000′s. I guess angered mostly by the fact that it is within the same class of diseases as SLE or Lupus, which I have. I also have unexplained aches and memory problems as well as suffering from a disease which can at times flare while I appear outwardly healthy. Yet at the same time, I’ve also suffered from seizures, hair loss, kidney disease, which can not be seen as just self-diagnosed or self-reported. I guess the idea that my self-reported pain, fatigue, and cognitive problems are in itself diagnosed as a separate illness just… doesn’t sit well with me. I guess I’m curious how a knowledgeable health professional may be able to differentiate Lupus from Fibromyalgia with only those symptoms. I think most times I don’t even go to an urgent care facility or see a doctor for symptoms that are termed “Fibromyalgic” because I actually don’t know what normal tiredness or pain is because I’ve had Lupus since I was 11. To imagine that people flood emergency rooms for feeling tired or “hurting all over” just seems to diminish and minimize diseases with measurable and independently assessable symptoms like Lupus."  C.S. Chloe

Firstly, C.S. Choe is consumed by his/her Lupus and is offended by any other disease encroaching on his "territory".  Since Fibromyalgia symptoms cannot be measured then it doesn't exist according to C.S. Choe.  That's an interesting logic for someone working on a PhD in psychology.  For those of you that don't know, a PhD in psychology is rich with research.  That includes the study of others' research and the research that the PhD student must do for course work.  In addition, Psychology is an interesting area of study, because symptoms are self-reported and could easily be faked.  So to me this is a paradox that doesn't make sense.  Maya Angelou made a comment about people revealing who they are.  It went something like this: When someone shows you who they are, believe them.  C.S. Choe's comments do just that.  He/she seems to be frustrated and angry that a self-reported disease like Fibromyalgia would compete with his perception that his Lupus is much more important.  My immediate reaction was anger, but then I realized that all C.S. Choe is doing is showing everyone who he is.  The fact that Choe would minimize a recognized disease and the misery that goes along with it is a testimony of how self-absorbed he is and he lacks compassion for others.  For me, my struggle with Fibromyalgia has resulted in more sensitivity, compassion, and love for all people living with a chronic illness.  I welcome any comments, because I love comments!!  Let me know what you think!

The Fibromyalgia Perplex

I have been following The Fibromyalgia Perplex, a collection of scientific and research based professionals that share and debate the topic of Fibromyalgia.  Perplex means to think logically and decisively about a topic. The Fibromyalgia Perplex blog has been visibly absent due to a "false start".  This blog is now back again and the rules for posting are quite restrictive:

About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal. We make these somewhat arbitrary rules to try to exclude the general, non-scientific public. We welcome comments by all scientists and social scientists, not just those who are physicians. This blog is moderated, meaning that the editors decide what will appear. In general, we will not censor on-topic scientific posts provided authors meet the above guidelines. If you don’t fit our guidelines and think you have something to contribute, send the editors an email at [As a modification, we will accept post from non-profesionals provided they meet certain criteria.]

The Fibromyalgia Perplex blog can actually be quite tedious for people that are not interested in research and the scientific method.  But if you are interested in "getting inside" of the heads of scientists, social scientists and researchers, then this blog is for you.  In the past, the participants have debated quite vigorously and reading about their thoughts and opinions is quite interesting and frustrating at the same time.  It is frustrating when the reader is not in agreement, but does not have the "clearance" to be able to reply and enter into the debate.

So, I put this out here for all of you to participate as observers in the sidelines.  To alleviate our frustrations, I welcome all of you to bring the debate here to my Web page so that all of us have a forum to discuss and debate the topics in discussion on The Fibromyalgia Perplex.  All I ask is that we all be respectful of each other and enter into this discussion/debate in good faith.  The url for The Fibromyalgia Perplex is  Meanwhile, enjoy the lively discussion and debate and I look forward to sharing our thoughts and experience related to this blog (The Fibromyalgia Perplex)!!  Blessings to all of you!