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CFS,mitochondrial diease, autism

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

  1. muffin

    muffin Senior Member

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    I know a 12 year old girl who was diagnosed with a genetic Mitochondria disease by Duke University at age TWO. She was born with it and it comes from the mother's side. So, she does not have CFIDS but does have MY CFIDS symptoms, most of them anyway. Poor kid. Her parents have done much of what the CFIDS people have done vis-a-vis meds and vitamins. She has NO immune system at all and her babyhood vaccines did not show up at all when they tested her. They gave her an ultra expensive med to bump up her immune system and then were going to give her all her babyhood vaccines again, but sadly the expensive immune med did not work.

    What did come to mind is that maybe we too have some sort of genetic fault in our mitochondria and then the rest of the triggers set in and we wind up with CFIDS. Dr. Kerr did find 88 genes associated with CFIDS and one (or maybe more) of those genes was a downregulated Mitochondria gene. Hope I didn't mess this one up - so double check what I have noted here.
  2. Frickly

    Frickly Senior Member

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    Interesting myths and facts about mitochondrial disease:

    http://www.umdf.org/atf/cf/%7B858ACD34-ECC3-472A-8794-39B92E103561%7D/mitochondrial_myths_patient.pdf

    MYTH
    Mitochondrial diseases are inherited only from your mother

    FACT
    The current thinking is that most mitochondrial diseases are the result of one or more complex
    inheritance patterns. Most mitochondrial diseases are the result of mutations (changes) in DNA
    located in the nucleus of the cell. Only mitochondrial disorders caused by mutations in the
    mitochondrial DNA (a specific structure in living cells, located outside the nucleus) are exclusively
    inherited from mothers. Another source of mitochondrial disorders, affecting a large percentage of
    patients, are poorly functioning mitochondria that become that way:

    as a consequence of another disease process (including other chromosomal disorders)
    as a result of exposure to toxins or viruses
    as a result of other inherited genetic mutations that are not disease-causing until "triggered" by
    some other genetic factor.

    MYTH
    Mitochondrial disease is a childhood disease

    FACT
    Although mitochondrial disorders are commonly seen in infants and children, they can occur at any age.
  3. Hysterical Woman

    Hysterical Woman Senior Member

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    Very interesting Frickly, thanks for posting.

    HW
  4. kurt

    kurt Senior Member

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    Good link. I did not know the muscle biopisy was so expensive ($10,000). Definitely the blood test sounds better.

    My summary is that the mitochondria themselves do not even have to be damaged or have bad DNA (They have their own) to be diseased. The mitochondria depend on a complicated metabolic cycle in our cells, so we can have bad DNA or blockages in that metabolic cycle and thus 'starve' the mitochondria, or not take good care of their needs.

    Isn't it fun to have a symbiant!
  5. FernRhizome

    FernRhizome Senior Member

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    Frickly:
    Great fact finding on the mito! Yes, the info about nuclear genetic defects (that can come from both parents) is very very recent in the mito world. The Vamsi Mootha study I am in where they are looking at 1,000 nuclear genes in 1,000 mito patients will be a big contributor to that information! ~FernRhizome
  6. FernRhizome

    FernRhizome Senior Member

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    The other two mito threads are under the XMRV research section. One is titled Letter to Obama and its a letter about mitochondrial disease by lots of the top mitochondrial doctors. The other thread is right near it and titled something like viruses and mitochondria. I wish we could get all three mito threads into one single place or one thread....]
    ~FernRhizome
  7. muffin

    muffin Senior Member

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    Woa!! Did NOT know this stuff

    NOW I have to go and do a bit of research. The Myths and Facts are counter to what I have read and been told. Have to see what this is all about now. Thanks for posting - Are they sure that Mito diseases/genetics don't come from the mother's side? :confused:


  8. JPV

    JPV Senior Member

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    There seems to be some distinction being made between Mitochonderial Disease (that one is born with) and Mitochondrial Dysfunction (which one develops later in life).
  9. MargeM

    MargeM MargeM

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    Hi Julia. If you don't mind me asking, what tests were done to rule out you and your son from having a mitochondrial disease? I'm just a little surprised to hear it could be ruled out so easily. It's my understanding that negative biopsies don't rule out the disease and sometimes labs are normal even when the disease is present. One of the more frustrating issues with attempting to get a diagnosis. I had labs done, checking for this - several times and they were abnormal every other time. So, I had doctors tell me "there IS really something very wrong with you".... "no, see your labs are normal; are you depressed?" .... "no - you really NEED to see somebody who understands this - there is something really wrong here" Thought I would lose my mind. Then I learned that is why it's so difficult to diagnose mitochondrial disease. Labs fluctuate day to day and the only thing that's important to know - if they are sometimes abnormal, that's an indication there's something amiss.
  10. MargeM

    MargeM MargeM

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    Mitochondrial disease

    You can have a genetic mitochondrial disease and not develop symptoms until later in life, so there really is no distinction there. As you age, the number of mitochondria decline - it's thought to be part of the aging process. Some people seem to hit a threshold at one point and start developing symptoms. I've sat in on more than one lecture where the researcher compares the body of a mito patient to an automobile (one that may have some defective parts). The car may do just fine if you only drive on flat roads, get your oil changed every few thousand miles and drive within the speed limits. But take that car out on a trip through the mountains at steep inclines and push it to it's limit and suddenly it starts breaking down. :( Symptoms of genetic mitochondrial disease can appear at any age. But don't be surprised if a doctor tells you otherwise. :confused: Most physicians just don't know much about this disease.
  11. JPV

    JPV Senior Member

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    Thanks for clarifying (yet another) confusing subject.
  12. richvank

    richvank Senior Member

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    "Avoiding the First Cause of Death" by Wulf Droge

    Hi, all.

    You might be interested in this book, available from Amazon. I've been reading it lately. Droge is a German biochemist who used to be at the University of Heidelberg, but now lives in Montreal. He did a lot of research on oxidative stress, cysteine, glutathione, AIDS, etc. He was the first person to link glutathione depletion with CFS. Basically, Droge says that as people age, their cells have more difficulty in "taking out the trash," such as in breaking down old mitochondria that aren't functioning very well. This is supposed to happen as we sleep, but over time the mechanism for doing this gets worn down by oxidative stress, so older people accumulate "junk" in their cells. It strikes me that this mechanism might be important in people who have CFS, because of the elevated oxidative stress. I suspect that one of the reason's Dr. Cheney's stem cell treatment is looking good is that cells from a newborn have good mitochondria, and as these cells multiply, they would replace cells with damaged mitochondria. Just a thought.

    Best regards,

    Rich
  13. Gerwyn

    Gerwyn Guest

    Hi Kurt

    Good summary for me the key points are

    Mirochondrial dysfunction can be aquired ,caused by viruses such as herpes,can be transient or intermittent and produce a symptom complex that accounts for Jodi bassets list I would love a little blinded experiment with a mito dr give notes of patients with cfs symptoms and those with known mito disorder-anonomise the patients .delete their histories and then ask him or her to detect differences
    I,m really glad that the us doctors know about Me/cfs I wasn,t sure that,s why I posted the letter----perhaps we will get better treatment from a group with no axe to grind!
  14. Gerwyn

    Gerwyn Guest

    Thank you I was worried that they wern't aware----The test will be excellent
  15. JPV

    JPV Senior Member

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    How does Mitochondria Dysfunction factor into the theories that you and Dr. Yasko have regarding the Methylation Cycle?
  16. Gerwyn

    Gerwyn Guest

    Hi CJB Dr myhills interventions tranformed from an almost vegatative state to about 80% recovery-----My mito,s are shot to bits If i stop taking Mg and B12 for any lengh of time............
  17. JPV

    JPV Senior Member

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    Do you take the Magnesium and B12 as injections (as per MyHill's recommendation), or have you found another form that is equally or nearly as effective?
  18. JPV

    JPV Senior Member

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  19. Gerwyn

    Gerwyn Guest

    Hi JPV yes I do exactly plus her mito suppliments
  20. JPV

    JPV Senior Member

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    How often do you take the shots and do you administer them yourself?

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