CFS,mitochondrial diease, autism

muffin

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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
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.
 

Frickly

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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.
 

kurt

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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!
 

FernRhizome

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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
 

FernRhizome

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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
 

muffin

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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:


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.
 

JPV

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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:
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).
 
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Thank You FernRhizome!
As a CFIDS caretaker (my son) and Patient.....we were tested for this disease immediately by our sepcialist at our first visit, to rule out Mitochondrial Disease. I would think all CFS/CFIDS/ME/FIBRO Docs would do this testing if they suspect the disease could be present. Especially when they see a sick Mother and child.
Blessi
Julia
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.
 
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Mitochondrial disease

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).
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.
 

JPV

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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.
Thanks for clarifying (yet another) confusing subject.
 

richvank

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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
 
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Gerwyn

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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!
 
G

Gerwyn

Guest
This is a great letter! Two of my mitochondrial doctors signed it: Vamsi Mootha and Dr. Bruce Cohen. There are already two other threads on this forum about mitochondrial cytopathy and CFS. I suggest we merge this letter with those threads?????

Yes, the mitochondria world is VERY VERY VERY aware of CFS. Don't worry! They know that we are part of their group. As I've posted in the other mito thread, Vamsi Mootha is working on some phenomenally designed new testing that will let a single drop of blood from a finger prick be tested for all 200 enzyme reactions in the mitochondria. That will bring fast diagnoses. It's being done in animal models and hopefully will be available for humans within a couple of years.

Also, if we don't move this thread could someone add the word "mitochondria" to the thread title? That's important as that's the topic of this letter and then other folks will find the thread, though perhaps merging with the other thread is more sensible?

See the other mitochondrial threads for more information. ~FernRhizome
Thank you I was worried that they wern't aware----The test will be excellent
 

JPV

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Hi, all.

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

Gerwyn

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I know that the saccharomyces yeasts are present in kefir. Obviously, not sure about that particular strain. I'm really interested in trying to compose a diet rich in the nutrients we need. So far, the kefir seems to be a great starting point.
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............
 

JPV

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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............
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?
 
G

Gerwyn

Guest
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?
Hi JPV yes I do exactly plus her mito suppliments