Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Mitochondrial Dysfunction

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 23, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    Dr. Hokama is back! Dr. Hokama was the one who discovered the ciguatoxin epitope in ME/CFS and other chronic diseases. This epitope seemed to signal ion channel dysfunction in ME/CFS. That was a couple of years ago.

    Now he's got a new study out focusing on cardiolipin that suggests mitochondrial problems are present. What is cardiolipin?

    Examination of anticardiolipin antibodies (ACAs) in the sera of patients clinically diagnosed with chronic fatigue syndrome (CFS) using an enzyme-linked immunoassay procedure demonstrated the presence of immunoglobulin M isotypes in 95% of CFS serum samples tested. The presence of immunoglobulin G and immunoglobulin A isotypes were also detected in a subset of the samples.

    I think this suggests the immune system is attacking part of our mitochondria - thus adding more evidence to idea that mitochondrial impairment plays a role in this disease.

    1: J Clin Lab Anal. 2009 Jul 21;23(4):210-212. [Epub ahead of print]. Anticardiolipin antibodies in the sera of patients with diagnosed chronic fatigue syndrome.

    Hokama Y, Campora CE, Hara C, Kuribayashi T, Le Huynh D, Yabusaki K.
    Department of Pathology, John A. Burns School of Medicine, University of Hawaii at Mnoa, Honolulu, Hawaii.
  2. Michelle

    Michelle Decennial ME/CFS patient

    Portland, OR
    Interesting, an autoimmune disease attacking mitochondria. That sounds like a plausible hypothesis linking the established marked dysfunction of the immune system and the growing evidence mitochondrial impairment. Looking forward to seeing further research on this.
  3. Frickly

    Frickly Senior Member


    Thanks for the information. I do beleive, for a number of reasons, that the mitochondria could play an important part in our disease. The mitochondria and immune system seem to be the key players in much of my research with regard to CFS and my sons autism. It makes sense, mitochondria produce all the cells energy (ATP). Our bodies lack energy. This can effect every organ in our body. Our immune system becomes weak and we are no longer able to detox from enviornmental toxins and continue to become sicker.
  4. Cort

    Cort Phoenix Rising Founder

    Autoimmune disease?

    Check out this from the CFID'S Association. Crossing my fingers they get this funded.

    They have a lot of partners - all Suzanne Vernon's work for sure. That woman is on the ball.

    This is big picture thinking - which is what she's all about.

    Wouldn't it be nice if it went through? We're due for a break that's for sure.
  5. SDD1244

    SDD1244 Guest

    "We're due for a break that's for sure."

    Well ain't that the truth !
  6. SDD1244

    SDD1244 Guest

    Speaking of autoimmunity in CFS patients... how many people here have a positive ANA titer ? I know my ANA titer was negative until several years ago and now it is as high as 1:640 (speckled pattern). Prof. Nicolson's research on mycoplasma and autoimmune problems makes sense to me:

    "When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response."


    And in his review on CFS, he also mentions lipid replacement therapy to help replace damaged mitochondrial membrane lipids and increase he efficiency of the electron transport chain... which should increase energy and reduce fatigue.
  7. Frickly

    Frickly Senior Member


    My doctor beleives that CFS is an autoimmune disease. The good news is she feels it is reversable.

    I can't help but get excited! I feel we are so close to finding a cause and cure! :D
  8. Aftermath

    Aftermath Guest


    Just an FYI that Dr. Nicolson also publicly posited that mycoplasmas are responsible for Gulf War Syndrome.

    After a thorough study was done on the effectiveness of antibiotics to combat mycoplasma in GWS patients, it looks like he was very wrong with this theory.

    Absent a solid study in ME/CFS patients, I cannot help but think that this is the case once again.
  9. Frickly

    Frickly Senior Member


    I am unsure if mycoplasmal infections are responsible for GWI or CFS. My gut tells me no. My experience tells me that it is largly responsible for the progressive nature of my disease. I have been on antibiotics for four months and it has made a difference between being homebound and having a life. I ran out a couple of weeks ago and was with out it for one week and went down hill so fast it was frightening. I once again had all the symptoms of MS and was unable to leave the house all week and in bed the whole weekend.

    Weather this is the cause or a factor that can progress our disease is unknown. However, I strongly beleive that we should all be tested for this bacteria and treated if neccessary.
  10. SDD1244

    SDD1244 Guest

    Hi Aftermath,

    I don't believe Prof. Nicolson has said that mycoplasma infections are responsible for Gulf War Syndrome. I think he's been mainly focused on the role that infections, particularly bacterial infections, play in chronic illnesses.

    I do know that Prof. Nicolson and has team have researched vaccinations in Gulf War soldiers and the role of chemical, radiological and biological exposures. Here is a link to Nicolson's research on Gulf War Syndrome:

  11. Cort

    Cort Phoenix Rising Founder

    It's all about finding the right treatment for the right person. More importantly it just amplifies the need to delineate all the subsets in this disease and to look for them in every study.

    This is one area the CDC has really let us down - they enlarged the disease population with their definition and never tried to break it up. In that scenario only low level therapies that treat broad parameters of chronic illness will show any effectiveness.

    Take CBT for example; I imagine that properly done, CBT would show an improvement in the quality of life for most people with a chronic illness. It might even improve immune functioning or blood pressure but is it attacking the source of the illness? Of course not.

    Frickly experience is so intriguing because it indicates that continuing to experiment can work - anyone could conceivably be a match for one of the treatments out there (or not!)
  12. SDD1244

    SDD1244 Guest

    I support whatever works and am always interested in reading success stories. I am very interested in mycoplasma infections because my specialist ordered this treatment for me and it has been working (although slowly). Of course I switched from antibiotics to homeopathic formulas from Germany. And in addition to this therapy, I also work closely with my new neuro-chiropractor. I love this guy because he has a poster of pathogens in his office, including mycoplasma ! :) He also knows a lot about CFS, fibromyalgia and autoimmune diseases.

    One thing I try to do is focus on the CFS physicians who have CFS themselves. I know I've read online that Prof. Nicolson was ill after his step-daughter returned from the Gulf War. I also read in Teitelbaum's book that Nicolson's wife has CFS. So I pay attention to these physicians who do not have an agenda.... and whose only agenda is to try to help others and dedicate their lives to researching these horrible diseases. (I hate to call CFS a "syndrome").

    One sad thing I've witnessed with my illness, is that there are politics are at play when you have a CFS diagnosis . Speaking of which... here is a startling fact about Gulf War Illness. Of course the symptoms of Gulf War Illness are so similiar to CFS. Anyhow, after the Gulf War, a U.S. Senate Committee had found that 77% of spouses and a majority of children born after the war had the signs and symptoms of Gulf War Illness (GWI). :eek:

    source: http://www.gulfwarvets.com/treatment2.htm

    I've read cases of lyme disease in which a child (or an adult) could become infected with the lyme bacteria and yet have no symptoms. Years later, that person is ill with a virus and then all of a sudden..... they have symptoms of lyme disease ! I believe the same scenario could play out in CFS patients who have bacterial infections. I believe bacterial infections also can be trasmitted to family members.
  13. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Interesting to note that Dr. Hokama suggested using Rituximab two years before the Norwegian study came out. He's pretty much overlooked for things such as State of Knowledge events.
  14. Mary Poppins

    Mary Poppins 75% Smurf

    I find the mitochondrial thoughts fascinating.
  15. ChuckG


    I have believed for 20+ years that my CFS was mitochondrial!

See more popular forum discussions.

Share This Page