1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
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CFS,mitochondrial diease, autism

Discussion in 'Other Health News and Research' started by Frickly, Jan 26, 2010.

  1. Frickly

    Frickly Senior Member

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    It is encouraging that these groups are beginning to see a connection and have begun working together. However, I do wish groups such as these would see that same connection as it relates to Chronic Fatigue Syndrome. My hope is that as the XMRV research comes out with regard to other diseases it will encourage such collaborations. Otherwise, I wonder, if the stigma attached to CFS will keep us isolated forever.

    http://www.autismspeaks.org/science/science_news/umdf_meeting_report_2009.php
  2. markmc20001

    markmc20001 Guest

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    WHOLLY GUACAMOLE!!!????????????????

    Did CFS get a new name while nobody was watching!!!??? mitochodrial diseas sounds like CFS to me????? WHOA??

    I read the mitochondrial disease website and it sounds like mitochonrial disease could be CFS?? what am I missing?
  3. markmc20001

    markmc20001 Guest

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    Mitchondrial disease, is it cfs?

    Is mitochondrial disease CFS? this blows my mind. Has CFS given been given a new name by scientist and nobody noticed? or what am I missing???

    http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692883/k.C0C7/Possible_Symptoms.htm


    frickly dug up the mitochodrial disease info up. I am re-posting this here under a new heading so it will get more attention, as this general news gets more viewing. Thank you Frickly!
  4. Frickly

    Frickly Senior Member

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    I don't think we are missing anything Mark. It's the rest of the world that needs to wake up.:) I sent an email to the mitochondrial disease foundation asking what they thought about the XMRV research. I was sent a nice email back saying that they have never heard of XMRV but she looked it up and thought it was interesting. She also said that many mitochondrial patients are first misdiagnosed with CFS. I have a feeling this was not a misdiagnosis but the same disease. Sigh......no one wants anything to do with CFS.....
  5. markmc20001

    markmc20001 Guest

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    I think it is great frickly. What I great find!. Finally we know what it is? fantastic! I got a mitochrondrial disease probably. I have had this feeling everybody but me knew what the heck was going on anyways.....well that is stil the case, but at least it provides some idea they know what the heck is going on.

    Can the people switch diagonosis, or how does that work? problematic I guess.

    Seems like it is broken and can't be fixed though? Kind of strange why nobody is talking about it here though.

    I posted a llink to the mitochondrial disease in the general news, we'll see what happens. I don't know if I gave you credit though. I'll edit that in.
  6. V99

    V99 *****

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    From what I have heard, mitochondrial disease is generally thought to be there from birth, hence the roadblock to the idea it can happen later in life, i.e. ME CFS
  7. Samuel

    Samuel Bedbound with NO DOCTOR

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    Although I don't know much about it, my understanding is that there is a prejudice that mitochondrial disorders only happen to kids.

    I'd kind of like to know what tests there are and whether there's a diagnostic code and set of recommended treatments and research program (other than Myhill and others we know of) and medical education and textbooks and continuing education for physicians -- for adult sufferers.
  8. starryeyes

    starryeyes Senior Member

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    Hmmm.. that's interesting. When I've looked up Mitochondrial Disease elsewhere in the past I came to the conclusion that I don't have it but when I look at the list you posted I've had many of those symptoms since at least the age of 3 and I've developed many of the others over the years.

    When I was little my parent thought I had Epilepsy because I used to have dizzy spells and sometimes fainted. But it was EBV at the age of 20 that really brought on CFS as we all know it.
  9. Dr. Yes

    Dr. Yes Shame on You

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    Hey Mark

    There has been plenty of speculation - but FAR too little research - on the role of mitochondrial dysfuntion and disease in ME/CFS. Some have speculated that a virus, other pathogen, or toxin directly or indirectly causes mitochondrial dysfunction in ME/CFS and other diseases.

    A group in Hawaii has found that a great majority of tested CFS patients have a phospholipid in their blood that is very similar to ciguatera toxin (a marine protozoa toxin common in seafood poisoning) and is highly toxic to mitochondria. As yet they don't know the source; it's just a very puzzling finding. Their research is supported by the National CFIDS Foundation; their published papers, unfortunately, are a little hard to understand (for me, anyway). Kim has a thread on a free test they are offering (as part of their research) for this "ciguatera epitope".

    Dr. Myhill in the UK is the only one I know of who offers a mitochondrial dysfunction test of sorts for ME/CFS patients (though I haven't looked into the science behind it yet).
  10. Frickly

    Frickly Senior Member

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    Yes, I'm changing my diagnosis right now. :) My daughter came home yesterday from school with a fundraising flyer for the mitochodrial disease foundation at chik fil a. Where are our fundraisers? Where are our flyers?
  11. FernRhizome

    FernRhizome Senior Member

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    Hi Folks:
    I have CFIDS but I also had a muscle biopsy which is the gold standard (at this point) for a mitochondrial disease diagnosis. I can answer a few basic questions about mito. There are a number of very bad mitochondrial diseases that kids are born with and which can greatly shorten and disrupt their lives. These are genetic diseases, mostly inherited from the mother as mitochondrial disease always comes from the mom (the mitochondria in the Dad are in the tail of the sperm and the tail drops off when an egg is fertilized). Those genetic diseases are fairly well known under an assortment of names and usually are extremely severe. They also involve exercise intolerance (a hallmark of CFIDS).

    Some cases of CFIDS are what are often referred to as "acquired" mitochondrial disease. You had a healthy person and then after an infectious, environmental or chemical trigger a mitochondrial disease develops. The trigger "unmasks" a genetic defect that was already there but might have not been a problem without the "insult" that unmasked it. While the genetic diseases are fairly well understood the "acquired" ones can be very variable. This is because when mitochondria convert food into energy it takes about 200 steps. If some of those steps are screwed up by the unmasking of a genetic problem than it causes disease.

    In my case my muscle biopsy showed very rare problems in complex II. The 200 steps are organized into five sequential "complexes". Most of the activity occurs within the mitochondria but in complex II the activity involves a conversation between the many mitochondria (and their dna) within the cell and the nuclear dna within the nucleus of the cell. The nuclear dna comes equally from both parents.

    There is a fantastic researcher now in Boston, Vamsi Mootha, who is developing a simple blood test that will involve one single drop of patient blood to check all 200 chemical steps. That will revolutionize mitochondrial disease diagnosis as a muscle biopsy will no longer be needed. Most neurological conditions probably impact mitochondria so to say one has a mito disease will be kind of like saying you have a virus. The question is where specifically is the problem? For instance diabetes involves a mitochondrial problem. So probably does Parkinson's. The great thing about the mito research is that usually its natural supplements that are helpful instead of drugs. So the treatments are safer but they don't fix things, its more like supplying the enzyme that isn't being made. Any time a disease involves a problem of energy metabolism and exercise intolerance it is pretty clear the mitochondria are involved! Hope this is helpful!

    Also, for those of you who, like me, do a bit better on CoQ10, which is one of the common mito supplements, you can join the United Mitochondrial Foundation and get very good discounts on the Vitaline product, which is one of the very best. Best wishes ~FernRhizome
  12. kurt

    kurt Senior Member

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    This has already been studied extensively and I would say yes, among other things CFS is an ACQUIRED Mitochondrial disease. Look at the work of Dr. Sarah Myhill. But we do not fit into the category of known mitochondrial diseases, because this is not just mitochondrial failure, CFS is more complicated than the simple mitochondrial diseases. And the mitochondrial failure appears to be reversable in CFS, which is not true for the other mitochoncrial diseases. Some people believe that low glutathione (due to infections or toxins), or intracellular infections (like mycoplasmas) are the cause of the mitochondrial failure in cfs.
  13. kurt

    kurt Senior Member

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    Great Post FernRhizome !!! And interesting info about Vamsi Mootha, I want that test! And he uses Systems Biology, that is in my opinion the only way to solve a complex illness like CFS.
  14. FernRhizome

    FernRhizome Senior Member

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    Thanks Kurt! Vamsi Mootha's work so far has been in animal models but he is hoping to it will be available for humans in the next few years. It involves a tiny "chip" with 200 or so microscopic "dips" each of which would test a step in the metabolic process. I have blood samples in his mito repository and he is also doing a fascinating project where he looks at 1,000 genes in 1,000 mitochondrial patients. I think I am in that study, which is very cool. Though I may never learn anything personal from it. They now think more nuclear dna is involved in the metabolic process than they previously thought. It is brilliant work. It will also cause lots of complications as to who is sick and who isn't! As probably a lot of people might have mild defects that don't really bother them at all.....so it will be very interesting to watch his research as it progresses. If you google for "Vamsi Mootha" you'll find info on him and his lab. He won a MacArthur Fellowship a few years ago. ~FernRhizome

    Websites on Vamsi Mootha and his amazing mitochondrial work:

    http://sysbio.med.harvard.edu/faculty/mootha/

    http://mootha.med.harvard.edu/members_vm.html
  15. Dr. Yes

    Dr. Yes Shame on You

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    FernRhizome - Thanks for the info about Vamsi Mootha. And what a workup you got on that muscle biopsy! Someone ought to publish a paper on those results (have they?).

    Just wanted to add that one of the ways a pathogen can induce mitochondrial dysfunction was shown in a study in the Journal of Virology investigating the effects of HHV-6B on mitochondria; the full text is here:

    http://jvi.asm.org/cgi/reprint/82/2...&searchid=1&FIRSTINDEX=370&resourcetype=HWFIG

    An excerpt: "Short-term HHV-6B infection of MT-4 T-lymphocytic cells induced syncytial formation, resulted in decreased mitochondrial membrane potential, and led to progressively pronounced ultrastructural changes, such as mitochondrial swelling, myelin-like figures, and a loss of cristae."

    The culprit in this study is a protein expressed by the virus in the initial stages of infection that interferes with Complex I activity (see FR's explanation of complexes above). This was NOT a study on human subjects, but I thought it might be interesting in terms of potential mechanisms...
  16. FernRhizome

    FernRhizome Senior Member

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    Hi: I just added links to Vamsi Mootha's websites in my post before this one. Muscle biopsies are notorious difficult to go through but honestly I thought it was a piece of cake compared to living with CFIDS! And I had an excellent surgeon and mito doctor at the Cleveland Clinic. Thanks for posting the info on the HHV-6B article. Interesting! One of these days all this science will make sense and they will understand what is wrong with us! ~FernRhziome
  17. Frickly

    Frickly Senior Member

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  18. FernRhizome

    FernRhizome Senior Member

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    Frickly:
    That article is by my fantastic mito doctor at the Cleveland Clinic: Dr. Bruce Cohen. He is tops!

    By the way I never check this part of the forum....should this thread be moved over into one of the research areas? I think more folks would find it there including me!

    ~FernRhizome
  19. anne

    anne Guest

    When my husband did his stress test and bombed the vo2 max, Dr. Peterson said the only thing that would cause a score like that was a heart problem, a lung problem, and a mitochondria problem. They ruled out the first two. So he thinks there's something there.

    I have been feeling poorly and did some labs and have really low carnitine--that's related, yes?
  20. FernRhizome

    FernRhizome Senior Member

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    Carnitine is one of the supplements most often prescribed for mito patients. It doesn't help me at all but most mito patients do well on it. You can get a prescription version "carnitor" if you have a documented mito problem (muscle biopsy needed for that) or over the counter.

    Prior to doing a muscle biopsies a mito doctor will do a fairly extensive blood work up which can show hints as to whether the muscle biopsy makes sense. Most commonly there may be a build up of lactic acid in mito patients and that will often suggest a muscle biopsy might be worthwhile to finalize a diagnosis. Also a skin biopsy is often done first which is an easy thing to do in a mito doctor's office. So usually it's blood work, then skin biopsy, then if deemed sensible, a muscle biopsy.

    Anyone for moving this thread over to a diagnosis/treatment area rather than general? I am less likely to follow it in the general thread.
    ~FernRhiziome

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