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Could Mitochondrial Dysfunction Be A Differentiating Marker Between Cfs And Fibromyalgia?


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My doc at Mayo thinks there is a problem with mito. He says there are very limited test that can be done to detect it and for the known issues with it - thinks it's not conclusive enough for us with POTS. He says he thinks there is a problem that at this point in time can't be checked for. But, maybe in the future will be able to be detected.

Issie

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The recent autoantibody article re: POTS & autoimmunity stated that there were autoantibodies to mitochondrial enzymes. I'm starting to really feel that this whole mess of syndromes that seem to come in groups for many of us become a "chicken or the egg" question.

Find the root cause, and treat it, should be the real goal. If it is autoimmunity, does treating that clear up everything, or most everything? There don't seem to be enough cases where this has been attempted and studied to get a definitive answer.

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Because my son's symptoms were so severe, this was one of the first things his neurologist checked for. It's a genetic test that takes 6 to 8 weeks to get back. Thank goodness the results were negative.

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I would go along with genetics in our families case!

I have been interested in the function and 'miss function' of extracellular matrix (ECM) http://jcs.biologists.org/content/123/24/4195.full for a while now as quite a bit of research coming out of Europe on it's defects, I got looking into it from the connective tissue side of things but it involves so much more.

For example:

"Extracellular matrix (ECM) glycoproteins are widely expressed in the developing and adult nervous system. Tremendous progress has been made in defining the roles of specific ECM components in controlling the behavior of neurons and glia (Sanes 1989; Reichardt and Tomaselli 1991; Venstrom and Reichardt 1993; Milner and Campbell 2002; Nakamoto et al. 2004). Here, we will provide an overview of ECM functions in the nervous system, emphasizing recent findings that have shed light on the mechanisms by which ECM glycoproteins regulate such diverse processes as neural stem cell (NSC) behavior, neuronal migration, formation of axonal processes and their myelin sheets, and synapse formation and function."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3003458/

"An astonishing number of extracellular matrix glycoproteins are expressed in dynamic patterns in the developing and adult nervous system. Neural stem cells, neurons, and glia express receptors that mediate interactions with specific extracellular matrix molecules. Functional studies in vitro and genetic studies in mice have provided evidence that the extracellular matrix affects virtually all aspects of nervous system development and function. Here we will summarize recent findings that have shed light on the specific functions of defined extracellular matrix molecules on such diverse processes as neural stem cell differentiation, neuronal migration, the formation of axonal tracts, and the maturation and function of synapses in the peripheral and central nervous system."

http://cshperspectives.cshlp.org/content/3/1/a005108.full

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Oh, Anna ---that depressed me! I know from doing my 23&me that lots of my markers point to my having EDS and also having connections to MCAS. But, when you look at these studies and realize with EDS and the connections with collagen, and some of the other components involved with us life long dysautonomia people - Genetics are a huge issue for us. Those things we can't un-do. We don't even like to say that out loud because we know we are stuck with that part of our illness. We won't EVER get over that part of it.

But, we do still have the hope of supporting and maybe reversing some autoimmune issues and have help with inflammatory things. So, not all is lost and we may get a level of our function and health back. Not all people with EDS comes down with POTS. So, there are some very functional EDS people that don't have dysautonomia to deal with. So, I'm hoping that at least maybe the POTS part will improve.

Issie

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I know it is rather scary, though I do think that accumulative effect may come into play here somehow! Think of it as some people may have one mutation that effects one area of ECM but someone else may have a number of gene mutations that effect different areas of ECM. That may be why many here do not meet the criteria for EDS but show the same sort of pattern of illness.

I think the holistic approach to good health is the way to go every thing we do has a knock on effect, if you make one bit of your body work happily then you put less stress on another part and such like.

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Yeah, that's the conclusion I've come to. Do all I can to support myself and then see what's left over after the fact. My diet seems to be making a huge difference and supporting my immune system with diet, supplements and meds - seems to be doing more for me then anything else I've tried. It's like my hubby always says ---do the basics and then find the best Band-aid you can to support the rest.

Issie

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The recent autoantibody article re: POTS & autoimmunity stated that there were autoantibodies to mitochondrial enzymes. I'm starting to really feel that this whole mess of syndromes that seem to come in groups for many of us become a "chicken or the egg" question.

Find the root cause, and treat it, should be the real goal. If it is autoimmunity, does treating that clear up everything, or most everything? There don't seem to be enough cases where this has been attempted and studied to get a definitive answer.

I know, right?! I wish someone would do a research study with a split group of dysautonomiacs, where they give IVIG to half and placebo to half and see how the dysautonomiacs respond.

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