United Mitochondrial Disease Foundation

[Wayne]

Hi All,

I just ran across the following "comment" left by Dr. Art Caylor in the comments section of the Wall Street Journal's latest article on CFS entitled, "The Puzzle of Chronic Fatigue", dated March 5, 2011.

I thought it was an excellent and concise commentary, in which he posted a link to the United Mitochondrial Disease Foundation at the end. I thought I would post it here, if for no other reason than to introduce you to a doctor who has some very insightful views on CFS and mitochondrial disease.

Wayne
........................................

by Dr. Art Caylor - March 5, 2011 - in the Comments Section of the WSJ

I am sure that most of you who are interested enough in this article to read the comments are already aware of the information I am going to provide but if not, then you may want to look into it. There is an emerging group of diseases that have many signs and symptoms in common with CFS/ME. Mitochondrial Diseases or diseases caused by mitochondrial dysfunction present with overwhelming fatigue, neurological dysfunction, muscle pathology, autonomic dysfunction, endocrine dysfunction, etc, etc. Sound familiar?? I will attempt to be brief because much better in-depth resources are available at the website I will provide focusing on Mitochondrial Diseases.

The manifestations of this group of diseases arise from damage to cellular energy production which leads to cellular dysfunction, which in turn creates tissue dysfunction which leads to organ dysfunction. You get the picture? The organs or structures that require the most energy will obviously be most affected. The neurological system, muscle of all kinds, GI tract, endocrine structures etc, are commonly the hardest hit. But what makes Mitochondrial Diseases so devastating and so difficult to diagnose is the fact that two people, even identical twins, can have the exact same genetic mutation or mitochondrial damage yet exhibit totally different manifestations and symptoms.

The implications of this group of diseases and symptoms are just beginning to be recognized, and the impact of mitochondrial dysfunction on diseases that we have known about for many years is being looked at closely. Recognizing Mitochondrial Diseases is not easy even when you are well aware of them and are knowledgeable about their presentations. Unfortunately very few people even know they exist. But an even bigger problem is the lack of awareness among healthcare providers and worse the lack of knowledge even when aware. There is an old axiom in the medical field that goes something like this: “diagnosing a well known disease is difficult enough, but diagnosing one you aren’t even aware of isn’t going to happen”.

My whole purpose of this discussion is awareness. If you don’t know about Mitochondrial Diseases read about them. You will be amazed when you see the many similarities with CFS. But more importantly if you are getting nowhere with the evaluation of symptoms that appear to be CFS/ME, consider one of the Mitochondrial Diseases in your list of other possible diseases. If you want more information about Mitochondrial Diseases check out the website for the United Mitochondrial Disease Foundation or UMDF, www.umdf.org. I think you will be glad you did.

 

[Wayne]

Comments on Human Compassion and CFS

Another great post by Dr. Art Caylor in the same comments section. I edited it a bit by breaking it into some smaller paragraphs for easier reading.

Wayne
.............................................................

by Dr. Art Caylor - March 5, 2011 - in the Comments Section of the WSJ

To all you who deny the existence of CFS/ME, and the immeasurable toll it has taken on its victims, I ask only that you lay down your need to exact more suffering and just for a moment allow yourself to feel the most basic of human feelingscompassion. I am truly sorry for whatever wounds or inequities you may have suffered, but denying the suffering of others will not repair them. This is one denial that you will someday recognize as flawed. In the mean time allow yourself the freedom of recognizing the suffering of others does not diminish your own. Whether it is acknowledged by the institutions of medicine or not, CFS/ME has gutted the lives of so many who just happened to be in the way. Whether you feel they are worthy or not, they need our understanding and we need to share their burden, for our sake as much as theirs, and offer the one thing that each of us is equipped to providehuman compassion.

I am a physician and first encountered CFS/ME when my best friend developed it, followed shortly by his wife. In spite of their seemingly good health they quickly became bedridden. As devastating as the fatigue was, it was their inability to concentrate and make decisions that created the greatest struggles. Being parents of 3 young children requires concentration and good decisions. I spent countless hours researching possible causes, running test after test. The only absolutely positive laboratory finding was Epstein-Barr titers that suggested a chronic presence of the virus. At the time Chronic EBV was a popular explanation for this bizarre malady, so that is what we called it.

I was not convinced, so I continued to search and was amazed at the enormous pile of suspicion and innuendo that supposedly provided countless etiologies for this devastating disease. I was even more amazed at the lack of scientific effort invested in providing a more rational and objective explanation. Fortunately they were surrounded by family and friends who knew the character and motivations of this young couple. Because of that support and understanding they did not struggle with doubters or deniers. No one questioned their ambition; no one accused them of being lazy. I never did find what I considered a viable explanation. Their case was milder than most and after a couple of years they were nearly back to their former selves. But it was 2 years filled with suffering, anger, confusion and a great deal of fear. It was also 2 years of reflection on my own part and a new understanding of how disease can change lives when science cannot provide a diagnosis.

That brings me to the real reason for this opinion. Our culture is confused about the nature and abilities of science, especially medicine. We are just starting to understand some of the most basic truths of the human body and how it so magnificently does what it does. The capability of technology has exploded, but our knowledge of how best to utilize technology to uncover the complexities and secrets of the human body is in its infancy. We have great potential but the learning curve is extraordinarily steep. The physiological processes of our bodies have the ability to change as the need arises; to adjust as new needs become apparent; to provide us with a stable internal environment, which we call homeostasis.

The bottom line folks is that medicine is not rocket scienceit is much, much more complicated than that. What this means is that science doesnt always have the answer; and sometimes when it does, our bodies go and change the game. What I am trying desperately to say is this. Just because medicine does not understand what is going on in a diseased body; just because medicine cannot give our suffering a name or a treatment; just because we dont understand why someone is sufferingdoes not mean that they are not. It simply means we dont have the ability to provide the answeryet. The suffering of a human being should never be discounted by the lack of scientific proof of suffering. How arrogant can we be!

Our calling as physicians should not be minimized by merely providing a diagnosis and a treatment. Our calling is to offer hope to those who have lost it, to search out the causes of suffering while we offer understanding of their suffering, and to assure them that we will be there with them as we continue to search. And as we wait, as we search, as we share with them the reason for hope, we provide the most basic human needcompassion. Anything less is an abomination of the trust we are given.

 

[Wayne]

Mitochondrial Awareness in Utah

Here's a link to a thread about mitochondrial disease awareness, started by ggingues on Feb. 7, 2011.

Help needed in Utah, URGENT ADVOCACY ACTION NEEDED

 

[Enid]

Thanks for posting Wayne - very impressive articles and straight to the points.

 

[Wayne]

Thanks for posting Wayne - very impressive articles and straight to the points.

Hi Enid, have to whole-heartedly agree with your comments. I love reading (and listening) to information that is direct and straight to the point.

I just did a search on this forum for United Mitochondrial Disease Foundation. Here's the Search Results.

Wayne

 

[toddm1960]

I tracked both dysautonomia and mitochondrial disease because I just couldn't take a CFS diagnosis with no true test. My internet search of symptoms lead me to DINET.org and UMDF.org both great sites full of inforamtion. At this point I had one doctor that really believed I was sick and he found someone to do a tilt table test, then onto Dr. Shoffner for a muscle biopsy. I would push anyone with a CFS diagnosis to have both of these tests done. I list all of my diagnosis on my signature.

 

[illsince1977]

Very perceptive comments by Caylor. Thanks for posting this, Wayne.

 

[Wayne]

Alternate ME/CFS Diagnoses ?

I tracked both dysautonomia and mitochondrial disease because I just couldn't take a CFS diagnosis with no true test. My internet search of symptoms lead me to DINET.org and UMDF.org both great sites full of inforamtion. At this point I had one doctor that really believed I was sick and he found someone to do a tilt table test, then onto Dr. Shoffner for a muscle biopsy. I would push anyone with a CFS diagnosis to have both of these tests done. I list all of my diagnosis on my signature.

Hi Todd,

Thanks for posting these links. I will be checking them out, and also hopefully doing some of the tests that may be available. This feels even more important to me because of a good friend's recent experience (she has ME/CFS) .

She had a heart attack shortly after Christmas, and being an RN, knew exactly what she was experiencing. So they didn't even call 911, they drove straight to the emergency room to get medical attention as soon as possible.

Her husband was being asked some questions about her medical history, and as soon as he mentioned her years of dealing with ME/CFS, everything changed. They slowed everything down, started talking in somewhat of a condescending manner to them, and basically did not believe she was really having a heart attack.

When they finally hooked her up to an electrocardiogram, they said something like, "now, this probably won't show anything, but we do need to do it to rule out any heart problems." Well, she was only hooked up a very short while, and they're going, "Oh my God, she's having a heart attack!"

Moral of the story for me, is to not share a CFS diagnosis with emergency room personnel unless absolutely necessary. Having some kind of diagnosis or history of documented mitochondrial dysfunction would likely be much less likely to elicit the kind of response my friend received.

Wayne

 

[camas]

Wayne,

Same thing happened to a friend of mine. She went to the ER and they completely dismissed her symptoms and sent her home when they heard she had a CFS diagnosis. It wasn't until she saw her doctor later in the week that she had an EKG and found out she had, indeed, had a heart attack.

 

[leela]

Thank you Wayne, for these excellent posts. WHat a compassionate and thoughtful doctor.
It is disheartening to hear these other stories though of people being dismissed and mistreated due to a diagnosis.

It is the height of cruelty and absurdity. As if, even if "CFS" were the mythological hysteria the Stupidheads pretend it is, that somehow excludes the possibilty the person might have a heart attack or any other "legitimate" condition? How scientific is that? Oh wait, that's not science, that's medical negligence.

It's so odd that "Fatigue" was the word of choice in naming the disease, because it could quite easily and legitimately be called a mitochondrial disease, an adrenal disease, a CNS disease, an idiopathic cardiac disease, a chronic inflammatory disease, an autoimmune disease, a chronic infective disease with multiple co-pathogens, a chronic enteroviral disease, a chronic pain disease, a viral encephalopathy ....How is it possible anyone is still pretending these systems are not involved? How is it even logical to think that once you get system failure in, say, the CNS, all the other systems are not going to at least compensate, if not break down as well? How do prejudices like these get so wide-spread?

Anyhow, for a long time I would just say Myalgic Encephalomyelitis and just let people give me that quizzical look. Now I just say I have a neuroimmune disease. Most lay people, to my surprise, can't suss out what even that means. Maybe we should say "NeuroImmune disease that causes mitochondrial disfunction." Funny thing is most people don't know what mitochondria are either.

 

[MargeM]

Not sure if this link was ever posted here, but it's a nice explanation of mitochondrial disease http://icyou.com/topics/diseases-conditions/understanding-mitochondrial-diseases.
I've been a member of the UMDF for several years and know that most adult patients who eventually are diagnosed with a mitochondrial diease were first misdiagnosed with one or more other conditions. Some years ago there was a poll taken on the mito group and I would say the majority were either given a CFS or FMS diagnosis prior to getting diagnosed with a mitochondrial disease.

 

[slayadragon]

These are really good links, Wayne. Thanks.

 

[Sing]

Not sure if this link was ever posted here, but it's a nice explanation of mitochondrial disease http://icyou.com/topics/diseases-conditions/understanding-mitochondrial-diseases.
I've been a member of the UMDF for several years and know that most adult patients who eventually are diagnosed with a mitochondrial diease were first misdiagnosed with one or more other conditions. Some years ago there was a poll taken on the mito group and I would say the majority were either given a CFS or FMS diagnosis prior to getting diagnosed with a mitochondrial disease.

It's seemed evident to me for years that mitochondrial damage is part of what ails me and probably most of us. There is a large overlapping area with the symptom list. But as to what is the cause?

 

[acaylor]

I tracked both dysautonomia and mitochondrial disease because I just couldn't take a CFS diagnosis with no true test. My internet search of symptoms lead me to DINET.org and UMDF.org both great sites full of inforamtion. At this point I had one doctor that really believed I was sick and he found someone to do a tilt table test, then onto Dr. Shoffner for a muscle biopsy. I would push anyone with a CFS diagnosis to have both of these tests done. I list all of my diagnosis on my signature.

toddm1960,
I realize it has been several months since your post which was a response to a comment I posted on the WSJ website about similarities of Mitochondrial Diseases and CFS. The symptoms listed in your signature are, as you know classic symptoms of Mitochondrial Disease, every single one of them. In light of your complex I and III abnormalities I would strongly encourage you to seek treatment for Mitochondrial Disease instead of CFS if you have not already done so. There are some interesting treatments being used to help reduce symptoms in those patients with known complex abnormalities. I am sure you are aware of all this but I know that sometimes doctors are not very direct with patients and I would truly hate to see you not be recognized as a true Mitochondrial Disease patient. You are one of the fortunate to have some findings that can be monitored and possible augmented with nutrition therapy. I apologize for not addressing this earlier but I lost tract of my WSJ post and didnt realize it had been reposted on this website until tonight. Good luck and be aggressive with getting treatment, you deserve it. Feel free to email me if there is anything you feel I might be able to do for you.
Thank you for allowing me the opportunity to address this with you,
Art Caylor, MD
acaylor@austin.rr.com

 

[glenp]

Vancouver Clinic

Vancouver Mitochondrial Clinic

http://maartens.home.xs4all.nl/me/RESOURCES/MITOCHONDRIA/MitochondrialDisorders.pdf


http://www.bcmj.org/articles/guest-editorial-mitochondrial-disease-and-family-physician


Mitochondria Toxicity of Prescrition Pharmacopaea

http://www.orlive.com/akronchildrens/mitochondrial

 

[Wayne]

I ran across this thread this morning, and am again impressed by the doctor who took the time to make such insightful and supportive comments on a Wall Street Journal article. I noticed this morning that he replied to this posting of his comments several months later. He left his email address in post #14, in case anybody would like to contact him directly.