Genetic mitochondrial dysfunction -- connecting dots?

Discussion in 'Fibromyalgia Main Forum' started by Waynesrhythm, Apr 14, 2007.

  1. Waynesrhythm

    Waynesrhythm Member

    I have recently been impressed by two articles, one by Sarah Myhill entitled “CFS is Heart Failure Secondary to Mitochndrial Malfunction”. It is located at:

    http://www.immunesupport.com/library/showarticle.cfm/id/7495/searchtext/CFS%20as%20Heart%20Failure%20Secondary%20to%20Mitochondrial%20Malfunction/

    The other one is “The Heart of the Matter: Dr. Cheney on Chronic Fatigue Syndrome & Cardiac Issues”. It is located at:

    http://www.immunesupport.com/library/showarticle.cfm/id/6679/searchtext/Dr.%20Cheney%20on%20Chronic%20Fatigue%20Syndrome/

    These articles are, in part, elaborations on a study done by Dr. Arnold Peckerman indicating impaired cardiac output in CFS patients. There are also references to mitochondrial dysfunction in both articles.

    I think both of these are remarkable articles based on some remarkable research. They also seem to connect to a video (see link below) I ran across recently about a child born with a genetic mitochondrial dysfunction, and how her mother used (hyperbaric oxygen therapy (HBOT)) to help her child live a normal life. It feels there may be some connecting dots here.

    http://www.ihausa.org/video/montel.html

    I feel I’ve only begun to start digesting all this information. Would be interested in hearing from anybody who has the interest (and/or the energy) in exploring some of this as well. Or, if you have already done so, what your current perspective is.

    At the risk of revealing how little homework I’ve done, I have the feeling this could also fit in with the Methylation Cycle Block theory of CFS/FM. I may however, be trying to connect too many dots too soon. I’m not feeling I have the energy to figure this out as soon as I would like, so whatever “critical thinking” you can offer would be appreciated. I look forward to hearing from you.

    Thanks.

    Regards, Wayne

    [This Message was Edited on 04/15/2007]
  2. openyourmind

    openyourmind New Member

    thanks to wayne--and all who bring these studies to our attention--i am having huge flare in arms and shoulders--can't type much--

    but i feel these studies have great value--i have recently seen the connection to heart, celluar function,and pain etc due to the folks on the forum pointing me to various approaches-just wanting to say thanks again!

    in my case there is definitely a strong genetic component--my grown son just phoned to say that his shoulder and arm are giving him great pain--sad news for me because he is so young and i fear he will have to suffer a lifetime of this too
    [This Message was Edited on 04/15/2007]
  3. Marta608

    Marta608 Member

    Sorry to have to suggest the work, Wayne, but do a search on these titles and you may find quite a bit of discussion on them that we had months ago when the articles first came out. Myhill is amazing. It makes sense, doesn't it?

    Marta
  4. TerryS

    TerryS Member

    Wayne:

    I am very interested in this myself; however, my cognitive function is so dysfunctional sometimes that I have a hard time focusing long enough to figure out what to do.

    In my case, they found a positive mitochondrial antibody in me (M2 - specific for primary biliary cirrhosis). I find it all very interesting...and perhaps my fatigue is actually from the PBC and not true CFS. But, because my liver function tests are normal right now, they refuse to do a biopsy and confirm my PBC.

    I also have mitral valve prolapse with regurgitation. Wonder how to connect all the dots myself. I've been interested in trying the CoQ10 cocktail, but all those supplements are soooo expensive! Have you tried it yet?

    TerryS
  5. deliarose

    deliarose New Member

    the mitochondrial cocktail suggested by Myhill.

    There's a whole thread on this.. where karen/barrowinnovations talks about how the cocktail helps her.

    And yes, Rich Van Konyenburg's theory on CFS explains the mitochondrial or cellular dysfunction referred to here.

    Rich is working on a paper with Myhill I believe.

    I think the connecting the dots thing is right. I believe the common denominator is glutathione depletion.. this will mess up the mitochondria of your cells among other things.

    I came across Myhill's paper years ago. Could not see how it fit into the big picture. Hence did not act on it. BUMMER.

    2 years later, i decide to give Rich's short-form methylation program a whizz. Bang, I get results in a week. Better sleep, better cognitive function. Obvious signs of detox.

    Methylation is step 2 of the Yasko protocol that Rich has adapted for CFS. Then, on this board, it emerges that other ppl are having success wtih the mitofuel as it is called (mitochondrial supplements) and Rich mentions.. oh yeah, mitochondrial support is part of step 1 of the Yasko program.

    So I have just ordered these supplements. Namely. D-Ribose, Magnesium, CoQ10, Acetyl L CArnitine adn NADH or niacinamide.

    Apparently NADH is a more bio-available form of NADH.

    I have used all this stuff in teh past, but not together. Did see some improvement but it was hit and miss. Although, I got rid of my fatigue more than a year ago, so it might not have been entirely wasted.

    BUT it finally seems like there may be a theory that ties all the disparate parts together and offers a ROADMAP to teh way back.

    One that offers a rational and organised approach to treatment instead of trying every supplement under the sun.

    I am cautiously optimistic that the science is there. The treatment side seems a little more complicated or maybe Yasko is just overcomplicating it. Dunno.

    I am VERY frustrated that I wasted so much TIME and MONEY and EFFORT trying to figure this out..

    But it seems to me that there are at least 2 things that one could now treat that may yield good results:

    Mitochrondrial support & Methylation support.

    There is some anecdotal evidence for the benefits of each of these on teh board. Check out the methylation threads and search under mitochondria/mitofuel.

    Keep reading and re-reading Rich's papers. Check under his user name for links to his papers.

    I think they repay the study.

    Delia
  6. deliarose

    deliarose New Member

    just re-read my post. It's as clear as mud.

    So to rephrase. Like you I have been groping in the dark for answers for some time, and INTENSIVELY for the past 2 years as I have been unemployed.

    I think Rich Van Konyenburg's theory of CFS may pull togehter all the pieces.

    It explains mitochondrial dysfunction, sleep dysfunction, hormone problems and all teh other MYRIAD problems that screw us up.

    Mitochondrial support is part of step 1 of the program. Methylation support is step 2.

    I have been doing methylation support for almost 2 months, and it has turned my life around. I cannot emphasise this enough. I want to jump off a f***ing rooftop I am so excited by the progress I have seen.

    In fact, I have been harassing Rich to reach out to CFS suffers overseas in teh UK, Australia and every other English-speaking country and tell thme about his work.

    There's more of that on the methylation threads.. ok, so where was I?

    Anyhow, just figured out mitochondrial support is part of step 1 of the program adn have just ordered up the supplements.

    But others, notably Karen, seem to think they really work.

    So anyway, do yourself a favour and read those other threads. My progress is encouraging but the numbers really tell the story.. and others are reporting v. similar and v. promising effects.

    Full disclaimer: it's still experimental. It's early days. I'm not selling anything. I Have no vested interest. BLah.Blah. Blah.

    DO YOURSELF a FAVOUR. READ the methylation threads.

    A very exuberant and recovering Delia.
  7. deliarose

    deliarose New Member

    Wayne's post questions whether the mitochondrial dysfunction in CFS patients is GENETIC.

    I know thsi can be a genetic defect, but Rich's theory suggests mitochondrial dysfunction is due to the glutathione depletion seen in CFS patients and hence is reversible.

    NOTE: Mitochondria: the energy powerhouses of the cells.

    delia
  8. Waynesrhythm

    Waynesrhythm Member

    Hi Delia,

    Thanks for your interest and your input. And thanks to all who have responded thus far. I wish I could engage more in this discussion at this time, but I’m currently struggling with energy levels and cognition.

    Which brings me to the subject of trying to read the methylation threads. Your encouragement to read and study them makes total sense, but I wonder if others besides myself are having difficulty doing this.

    It seems every time I start, I wear out very quickly as I try to take in the various points and nuances of various posts. Then somebody may respond with a somewhat different perspective, angle or question, and pretty soon my poor brain is barely stumbling along on tangent overload. Then add the brain stress of working on the computer, and I sometimes despair of ever pulling this all together.

    I finally decided to stock up on ink jet this past week, and just go ahead and print out all of the threads. My plan was to then go over it all and mark it up with column notes, etc., and start a whole new notebook section on what the relevant and important points were. THEN, I would try to remember that I had done all this work.

    This reminds of the movie Philadelphia where a lawyer played by Denzel Washington used a line throughout the movie, “Could you explain it to me as if I were a 6-year old?” This is how I feel so often as I delve into the methylation threads and then try to connect the dots between them and the two articles that I mentioned that I feel are so significant.

    Can anybody else relate to what I’ve just described? If anybody might have some suggestions on some simple and effective ways to approach this “integration of information” dilemma, I would certainly be interested in your feedback. Thanks.

    Regards, Wayne
    [This Message was Edited on 04/15/2007]
  9. Catseye

    Catseye Member

    I have been studying this ridiculous disease for 4 years and am finally recovering. I should be back to normal in the next few months, as soon as I recondition my muscles, I believe. Look at my "what worked for me". I list everything I needed, which is probably going to be virtually the same for all of us in bad shape. Just start writing down the substances I've listed and start researching them and you'll see their importance. All the methyl donors are listed, the aminos for cognitive function, the mitochondria fuel which get me up in the mornings, etc.

    And more of Cheney's articles are listed at the bottom that talk about low blood volume and poor oxygen transfer. Everything you need to fix yourself is listed there, including all the hot topics that everyone is trying now, finally. Don't let the amount of substances you have to take scare you. Our bodies are deficient in so many things, and were for so long, that we need to give it what it needs so it can fix itself. All of these supplements are either substances you get from food or they are substances a healthy body can manufacture itself. Unfortunately, that ain't us. Hence, the need to buy them all in supplement form and have them ready for the body to use.

    Also watch for my next post about organic acid metabolic testing. This test will tell you exactly what supplements will benefit you. I just got the results, which are amazing, and I'll go over them for everyone. But it's really long and complicated and I'm trying to figure out the best way to post.

    good luck,

    karen
  10. richvank

    richvank New Member

    Hi, Wayne.

    ***I think you have already gotten some good responses. I especially think that deliarose is on target. But I will make some comments too, for what they are worth.

    I have recently been impressed by two articles, one by Sarah Myhill entitled “CFS is Heart Failure Secondary to Mitochndrial Malfunction”. It is located at:

    http://www.immunesupport.com/library/showarticle.cfm/id/7495/searchtext/CFS%20as%20Heart%20Failure%20Secondary%20to%20Mitochondrial%20Malfunction/

    The other one is “The Heart of the Matter: Dr. Cheney on Chronic Fatigue Syndrome & Cardiac Issues”. It is located at:

    http://www.immunesupport.com/library/showarticle.cfm/id/6679/searchtext/Dr.%20Cheney%20on%20Chronic%20Fatigue%20Syndrome/

    These articles are, in part, elaborations on a study done by Dr. Arnold Peckerman indicating impaired cardiac output in CFS patients. There are also references to mitochondrial dysfunction in both articles.

    ***I agree that this is good stuff. As deliarose said, Sarah Myhill and I are currently working on a paper together about mito dysfunction in CFS. And Paul Cheney has done some very good work on diastolic dysfunction in CFS.

    I think both of these are remarkable articles based on some remarkable research. They also seem to connect to a video (see link below) I ran across recently about a child born with a genetic mitochondrial dysfunction, and how her mother used (hyperbaric oxygen therapy (HBOT)) to help her child live a normal life. It feels there may be some connecting dots here.

    http://www.ihausa.org/video/montel.html

    ***Inherited mitochondrial diseases are different from the mitochondrial dysfunction in CFS in that the latter appears to be for the most part acquired, rather than hereditary. By definition, people are not born with CFS. That's not to say that polymorphisms in genes that code for proteins in the mitochondria might not be involved in the predisposition to CFS.

    I feel I’ve only begun to start digesting all this information. Would be interested in hearing from anybody who has the interest (and/or the energy) in exploring some of this as well. Or, if you have already done so, what your current perspective is.

    ***My perspective is that all of this fits together in the Glutathione Depletion--Methylation Cycle Block Hypothesis, which is discussed here:

    http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

    ***Both mitochondrial dysfunction and diastolic dysfunction are discussed in that paper, and their causes are given.

    At the risk of revealing how little homework I’ve done, I have the feeling this could also fit in with the Methylation Cycle Block theory of CFS/FM. I may however, be trying to connect too many dots too soon. I’m not feeling I have the energy to figure this out as soon as I would like, so whatever “critical thinking” you can offer would be appreciated. I look forward to hearing from you.

    Thanks.

    Regards, Wayne

    ***Well, I'd say that you and I are "on the same page" about this, Wayne. I think it all fits together rather well.

    ***Rich
  11. springrose22

    springrose22 New Member

    I have been very slowly but steadfastly reading the threads re methyl block, and had also in the fairly recent past found myself interested in both Dr. Cheney and Dr. Myhill's research. But, like Wayne says, most of the time, I would feel like collapsing before ever getting very far any time I sat down to read to try to absorb anything. Rich, this confirms it for me: there is a connection!!

    Thank you Wayne for starting this thread, thank you Rich for all your work, and thank you Delia and Karen for having such pioneering spirits! I am truly grateful. Marie
  12. richvank

    richvank New Member

    O.K., Marie. It looks like quite a few "great minds" are converging on the same conclusions! :)-) There's an old saying that a good idea becomes the property of everyone. I'm hoping that this hypothesis will indeed measure up to become the property of everyone. I can tell you that in my 40-plus years as a working scientist, I've never had the experience of things fitting together so well and so easily as they have with this hypothesis. Usually it's more like pulling teeth to come up with a hypothesis that really fits the obsrvations, and you have to keep dumping what you have and starting again. But in this case, thanks to the things others did, that I have been able to take advantage of, the whole thing has come together very smoothly.

    Rich
  13. Waynesrhythm

    Waynesrhythm Member

    Hi Karen,

    Thanks for your recent response. I plan to review some of your posts and probably get back to you with some questions at some point. Also, I will look forward to hearing about your organic acid metabolic testing results. By the way, I liked your comment about trying to figure out the best way to post. Posting simply but effectively is a real skill that I truly admire.

    Hi Rich,

    Thanks so much also for your responses. I appreciated the points you made, but at this time appreciated perhaps even more some of the perspectives you shared. How in all your years of experience as a working scientist you have never seen things fitting together so well.

    I know I will eventually cycle up so I can better understand what you, Karen, Delia and others are trying to share with us. Though I don’t have this understanding as of yet, it does not prevent me from being optimistic. And for having that truly precious commodity, I am grateful.

    Regards, Wayne
    [This Message was Edited on 04/18/2007]
  14. getwellgirl

    getwellgirl New Member

    Hi all

    I have been on all the mito support suggested for the past 18 months. Dr M is my CFS doctor.

    Actually it hasn't really made much difference to me at all, especially when I compare to how taking low dose Prednisolone plus getting my dose of Armour right (together with 25mcg thyroxine). I think the D Ribose might help with recovery though if I have pushed myself to do too much physical stuff so I would always keep it here and use it straight after a walk together with Musceleze (Nutri) to rebuild the energy I have used up.

    Just because it hasn't really made much difference to me doesn't mean it won't help others. It can get a bit expensive because of the Q10. BTW I couldn't go above 100 mg Q10 because it gave me insomnia and now I just take 60 every day.

    I also get more benefits from NADH 5 mg x 2 rather than the nicotinamide, that didn't make any difference to my energy at all but it might have aided my blood sugar, I am not sure.

    From my own experience I have found that working on getting methylation improving has helped me a lot more (extra folinic acid, lipoceutical glutathione etc) together with the support for my endocrine system.

    Pam
  15. deliarose

    deliarose New Member

    seems like Rich has spoken about this... CoQ10 is part of the Krebbs cycle.. low glutathione messes up teh Krebbs cycle.

    A block in methylation suppresses glutathione.. Removing the block allows glutathioen to come back.. and then the Krebbs cycle should fix itself.

    I take on board what Pam has said, but I know Karen is having good results with the mito fuel supplments recommended by Myhill (see article in library)

    but instead of niacinamide she uses NADH liek Pam.

    delia
  16. richvank

    richvank New Member

    Hi, banya.

    It's a fact that the synthesis of coenzyme Q-10 requires methylation, so a block in the methylation cycle should be expected to lower the rate of production of Co Q-10. I don't know to what degree the skeletal muscles normally import Co Q-10 from elsewhere, vs. how much they synthesize it themselves. If they normally synthesize most of what they need themselves, then a block in their methylation cycles could account for what you are observing. Because they are one of the organs that are most vulnerable to glutathione depletion when the body as a whole is depleted in glutathione, it would be expected that their methylation cycle would by more suppressed than that of other organs, such as the liver.

    It's also true that Co Q-10 acts as an antioxidant beside acting as a carrier of energetic electrons for the respiratory chain in the cells. In CFS, most people suffer from oxidative stress, which I believe results from glutathione depletion. As I said above, it appears that the skeletal muscles are organs that are most vulnerable to glutathione depletion when the body as a whole had depleted glutathione. Under this condition, I suspect that there would be more pressure on Co Q-10 to cope with the oxidative stress, and that would tend to deplete it, too.

    Thanks for posting this information. I don't think I've heard from any other PWCs who had these types of tests run.

    Rich
  17. richvank

    richvank New Member

    Hi, banya.

    Sr. Sarah Myhill and I are working on a paper about mitochondrial dysfunction in CFS. There is lots of evidence for it in the published CFS literature, and Dr. Myhill also has a good correlation between the degree of mito dysfunction as evaluated in the neutrophils by Dr. John McLaren Howard of Biolab Medical Unit in London, and the degree of disability as evaluated by questionnaire, which hopefully will be published later on.

    Rich