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Ten Discoveries about the Biology of CFS

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This summary of important CFS research findings is reproduced with kind permission from the Summer 2008 issue of The CFIDS Chronicle, a quarterly publication of the CFIDS Association of America.

1. Chronic fatigue syndrome is not a form of depression, and many patients with CFS have no diagnosable psychiatric disorder.
As with most chronic illnesses, some CFS patients become depressed because of the impact of the illness on their lives, but most studies find that the majority haven’t experienced depression before the onset of illness.

2. There’s a state of chronic, low-grade immune activation in CFS.
There is evidence of activated T cells, activation of genes reflecting immune activation and increased levels of immune system chemicals called cytokines.

3. There’s substantial evidence of poorly functioning natural killer (NK) cells—white blood cells important in fighting viral infections.
Studies differ as to whether there may be increased numbers of NK cells in CFS patients.

4. Abnormalities in the white matter of the brain have been found in CFS patients using magnetic resonance imaging (MRI) scans.
Typically, these are small (fraction of an inch) areas just below the cerebral cortex, the outermost area of the brain hemispheres. Differences in gray matter volume are also being observed.

5. Abnormalities in brain metabolism, as indicated by single photon emission computed tomography (SPECT) and positron emission tomography (PET), have been discovered.
Other research suggests there’s something wrong with energy metabolism and the oxidative electron transport chain in the mitochondria of CFS patients.

6. CFS patients experience abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the hypothalamic-pituitary-adrenal (HPA) axis, but also the hypothalamic-prolactin axis and hypothamalmic-growth hormone axis.

7. Cognitive impairment is common in CFS patients. The most frequently documented abnormalities are difficulty with information processing, memory and/or attention.
8. Abnormalities of the autonomic nervous system have been found by numerous independent researchers. These include a failure of the body to maintain blood pressure after a person stands up, abnormal responses of the heart rate to standing and unusual pooling of blood in the veins of the legs. Some studies also find low levels of blood volume.

9. CFS patients have disordered expression of genes that are important in energy metabolism. Energy comes from certain natural chemicals that are processed by enzymes inside each cell. These enzymes are controlled by specific genes. Other genomic research is revealing involvement of genes connected to HPA axis activity, the sympathetic nervous system and immune function.

10. There’s evidence of more frequent latent active infection with various herpesviruses and enteroviruses.
The herpesviruses include Epstein Barr, HHV-6 and cytomegalovirus. Other infectious agents, like bacterium that cause Lyme disease, Ross River virus and Q fever, can also trigger CFS.

[Note: To learn much more about these discoveries and the underlying research, watch the fascinating video presentation by CFIDS Association Scientific Director Suzanne Vernon, PhD, assisted by President Kim McCleary, at http://www.cfids.org/webinar/sciencecfs-video.asp.]
* Anthony Komaroff, MD, is a professor of medicine at Harvard Medical School, senior physician at Brigham and Women’s Hospital in Boston, and the editor-in chief of Harvard Health Publications. Dr. Komaroff has an ongoing research program on chronic fatigue syndrome and has published more than 230 research articles and book chapters.

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9 thoughts on “Ten Discoveries about the Biology of CFS”

  1. pmack says:

    I have had CFS and FM for 14 years. Back then there were not all the tests in my area(Leechburg, PA-1 hr from Pittsburgh)to determine everything on your list. I found an alternative doctor who helped me and we determined that I had about everything on your list and worked through it. I had to quit my job and heal. After 7 years, it seemed every system in my body started working together again and my brain functions and energy started improving. I am not anywhere where I used to be, but I function normally unless I overdo it. I get a mile walk in almost everyday, have to eat well, limit what I do in a day and spread household chores and outdoor chores out during the week. I could not afford to go to doctors to get the tests, but researched and know I have had many of the prognosis on your list. I need 9-10 hours sleep each night, take vitamins, no medicines at all, get intravenous Vitamin C for sinus infestions I get every couple years, etc. I feel bad for anyone that has to continue working and not get the sleep they need or get stress out of their life. We can only heal if we get our body, mind and soul(most important part) working together. Reading the Word of the Lord is so important.God bless all of you with CFS and FM. I can be contacted at my email if anyone wants to ask me any questions.

    1. renjanson says:

      Hi pmack,

      I have had CFS for 4 1/2 years and I get alot of sinus infections also.

      Does your regular primary care doctor give you the Vitamin C IV?

      What all have you done to get better?

      I would like your email to ask you more questions, if
      that would be okay.


    2. susanjones says:

      I’m starting on my 20th year with this “life-killer”, and I read these ProHealth and CFS Assoc. newsletters, just waiting for that new BREAKTHROUGH. Good luck to me. There aren’t any. With Obama in the White House and with many more Dems who seem to care more about health care than the GOP for us “little or already sick people”, I hope their is some light for us at the end of this tunnel…as this tunnel has been going on for a long time. Has the CDC and NIH actually used all our CFS/FM funds for other research? Are there none but the usual suspects competing for grants to find an answer or help find a cure?
      It is so frustrating. I’ve done my 15+ years of research, I’ve suffered what others have suffered at the depths of this disease (thus far), it’s ruined my career, my life, my friends, etc. and I don’t want to whine “poor me”, but give me something hopeful to hang on to.
      The “new and exciting” research is just the same old, same old….expressed in new terms or in reused terms. I would like to see some actual studies that are being done that have never been done before. I’d like some M.D. to break out of that AMA mold or box and do something exciting on their own that yields new outcomes and data. If we don’t have the funding….I think it is time for us floor crawlers to have the same funding rights and pushes for fund-raisers that other more “public” (like breast cancer, ALS, MS, or Lyme disease)diseases get. I see nothing nor any “well” people or relatives even trying to raise money for research.
      If you saw “Lorenzo’s Oil”…we need that Nick Nolte and Susan Sarandon. We need some fighters on our side. I used to be able to put some kind of fight for information or treatment, but I don’t have the stamina any more. What is with families and friends of CFS patients? Don’t they care as much as families and friends who have other diseases.
      I feel left in the dirt, just like the other 19 years of this “hell on earth”. Can someone give me one little shred of hope that someone on this earth is studying CFS patients and their labs for a cure or some more data on the causes?? Please, I beg you to do that. Oh sure, live with your disease….like we have a choice. But please, oh please, could someone be on our side, with our best interest at heart?? Susan in Nevada at Deneb@cox.net

    3. renjanson says:

      Does your primary care doc give you the Vitamin C IV?

      If not, where do you go for it?

      I would like you email to ask you more questions.



    4. springrose22 says:

      None of these discoveries is “new”. Not one. Dr. Byron Hyde was talking about all of these items many years ago. What is going on? There is nothing new here. This seems like a waste of time and money. Marie

    5. findmind says:

      i agree with you: we start all over every 10 years!



    6. scooternsassy says:

      Hi Pmack, I am from Pittsburgh and am looking for someone to help with my CFS. Do you mind telling me who you saw to help you get better?
      Health and happiness,

  2. hope4all says:

    Dr. Kent Holtorf.
    Torrance, Ca.

  3. shut-in says:

    I have learned to manage my disease to a certain extent over the past 8 years, but I’m still VERY angry at the CDC for not taking CFS seriously enough to REALLY research it. In fact, many of you know that the first time they received a budget for the study of CFS they used it to study MS instead. Yes, they got their hands slapped. ugh!
    My 36 year old daughter became sick with CFS more than 16 years ago. Still, she has struggled to have some kind of life. She’s married, has one very energetic 4 yo boy, and works full time. I just want to smack somebody for not helping her! Both of us have suffered long enough. Like you, I’ve been doing my own research ever since I became ill. So far, not one thing of any value whatsoever has been discovered by anyone.
    Sunny Lindsay
    Salt Lake City, UT

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