Saturday, October 17, 2009

Testimony at HHS, CSF Advisory Committee

I am going to Washington DC to testify at the CFS Advisory Committee division of Health and Human Services.  My mother (who lives in the Maryland suburbs) also agreed to come and testify.  Here are the written testimonies that we submitted and will deliver orally on October 29.

Mom's testimony

It is very painful to have a sick child.  It’s extremely painful to have a child who has been sick for many, many years.  It has been most painful when physicians have told her,  “it is all in your head,” or “we don’t know what to do to help”.

It is very painful to have a daughter who, at the height of her career, acknowledged as an expert in her field, invited to speak at conferences all over Europe (which I sometimes attended), voted a favorite teacher by her students, had to leave her position as a tenured professor because she was unable to execute her duties.

It is most painful that, when she sometimes feels a bit better and we all have hope that she is improving, she relapses back to weakness and exhaustion and we go back to feeling dismayed and hopeless.

This pattern has been going on for twenty-three years. Let me describe the differences I see in my daughter so that you can get a sense of the devastating impact of Chronic Fatigue Syndrome.

From the time my daughter was a young girl, she was a ball of energy—always moving, always engaged in some important pursuit. She was athletic, at the top of her class, dedicated to excellence, studious, disciplined and able to think and reason critically. When she became ill, her life, and, as a result, mine and my husband’s, changed dramatically. She and her young daughter lived in the University town where she was an associate professor. While fighting a custody battle, being a single parent and working full time, I was aware that she was feeling more and more exhausted. It was extremely painful that after winning the custody battle in court, she had to relinquish custody of her child to her former husband, as she was too ill to take care of her child.

When my daughter received the diagnosis of Chronic Fatigue Syndrome, she drew on her research background immediately. Her extremely high IQ together with her experience doing in depth research about unfamiliar topics served her well. She found doctors who were touted as specialists in CFS. She traveled across the country and to other countries to work with these specialists. All to no avail. However, she did not give up. She began studying the syndrome on her own. This led to her study and subsequent certification as a doctor of naturopathy.

Her perseverance and tenacity also showed up as she explored different modalities to increase the quality of her now compromised life style. She found that yoga helped her feel better during the day. As she practiced yoga, as she tended to do, she became an expert yoga instructor. She hoped to be able to have the energy to teach yoga as it helped her feel so much better. However, after attempting to do so and getting a following quickly, she found that her poor health prevented her from having the consistency necessary to maintain an ongoing class. She now practices yoga regularly for her own well being.

So from being an active person who hiked and biked regularly, visited museums frequently, cooked gourmet meals, wrote and published articles for professional journals, wrote chapters for art history textbooks, taught a full course load at an academically rigorous liberal arts college, and raised a developmentally disabled daughter on her own, she is now an invalid, living an extremely compromised and limited life.

Over the years, I have stayed with her in her home to help out with the bare necessities of life. I am thankful that her partner is a generous and extremely helpful man, quick to take care of many of the chores. She could not have made it on her own as there were days when she could not stand for more than a few minutes let alone go to the grocery store. House chores were out of the question as was any form of exercise other than yoga.

Last year when she had another set back, she came from Ohio to live with me because she was in such a physically weakened condition that she was unable to do even the minimum to care for her self.  When she arrived and for several months following, she used my deceased husband’s wheel chair as she was unable to stand for more than a few minutes without having to lie down for hours to recuperate. She stayed for six months as I tended to her care –putting my own life on hold as I watched her withered weakness gradually transform into a bit more strength.  She found that acupuncture relieved her and helped her feel more comfortable so she went to a practitioner several times a  week.  Fortunately, I was able to help subsidize the cost of her yoga and acupuncture as none of that was covered by insurance.  I am grateful I am able to help but other parents  may not be  in such a position.

I have been and continue to be distraught. It seems unconscionable to me that we are not putting more research dollars into understanding this syndrome. Somewhere, there must be a researcher who can unlock the secrets of this malady.

Even now, when she is as well as she has ever been with this illness inside her, it breaks my heart to experience the following:
  • she needs to rest several times a day,
  • she can only make tentative plans as they may need to be broken,
  • we cannot go to a museum together here in Washington because she gets too exhausted.
  •  if she doesn’t get to her nap on time she may be negatively affected for two days afterward,
  • we can’t go out for dinner if there is too long a wait
  • if she doesn’t eat on time, I can read her weakness on her face.
  • she can’t stand in line at a check out lane if she doesn’t bring along a stool to sit on.

It is unfair and sad that I can run rings around my daughter, energy wise, although there is more than a generation between us and I have a bad back!

My testimony

I was a distinguished art historian, a Fulbright Scholar who received grants from federal agencies such as the NEA and NEH, who served on a granting board of the NEH, and who received numerous awards from private foundations. 

I came down with CFS on May 2, 1987.  In addition to the onset of classic physical symptoms of sore throat, low grade fever, dizziness, and muscle weakness, the cognitive effects of the illness were immediate.  I developed paraphasia -- pointing like an idiot at forks and bowls because the words for common objects wouldn’t come to mind -- and I found it difficult to organize ideas.  The only article I ever had rejected for publication was the one I wrote that first summer!

The neurocognitive effects of the illness continued over the years, worsening at the end of the first decade.  Math had been my top subject in high school, and my math SAT score had been 760 out of 800.  As CFS advanced, I found myself unable to do simple arithmetic.  I also lost skill in visual recognition -- skills that had made it possible for me to ace art history courses and get my doctorate.  When I finally had neurocognitive testing in 2005, at a time when my symptoms had partially abated, I scored down in the 14th percentile for visual recognition and spatial skills.  I had once been the Department Chair and could no longer organize a few files in my home.

For a long time I struggled with depression at the tremendous losses I’d suffered -- loss of career, loss of the ability to lead an active life, loss of competence in many tasks.  Eventually, working with yoga, meditation, and natural forms of medicine, I was able to make peace with my restricted life and find joy in the simple tasks of living.

My healing journey of 22 years is a modern odyssey.  I have travelled to California and New York, Mexico and the Caribbean, exploring protocols of mainstream physicians and protocols of holistic practitioners.  Some protocols helped me make substantial progress towards recovery; others caused me to worsen, often creating a ripple effect that continued to shimmer for several years.  But when I compare myself to many of the non-working afflicted on the internet forums dedicated to ME and CFS, I know that I am one of the lucky ones.  I had the research skills and the brain power to dedicate myself to studying human physiology, homeopathy, herbs, and nutritional supplements.  This knowledge has made it possible for me to control my symptoms (and control is the operative word) so that I no longer suffer with the ups and downs of bad days which torment the lives of my friends.  I’ve also had the financial resources to explore acupuncture and other healing modalities.

Because of my partial success, I’m asking the CFS Advisory Committee, to give more attention to nutritional interventions.  The pharmaceutical companies have plenty of incentives to develop drugs for CFS, given its estimated prevalence between one to four million Americans.  We need YOU to undertake the kind of research that private companies have no incentive to undertake. There is serious and enthusiastic discussion on internet forums about several protocols which have alleviated symptoms in numerous individuals with CFS. Some individuals have improved substantially enough to return to the work force.  Others have reduced suffering, doctor’s visits, complications, and costs.  Here is a brief list:

1.  Vitamin B-12.  People report success taking only the active forms, adenosylcobalamin and methylcobalamin, while avoiding the inactive forms of cyanocobalamin and hydroxocobalamin.  We need more research as to why cerebrospinal fluid shows low B-12 while serum B-12 levels are normal, when MMA is the most accurate way to measure functional need, or whether the new tests of transcobalamin are more accurate.

 2.  NO/ONOO.  People report success taking specific antioxidant supplements designed to scavenge peroxynitrate according to the theory advanced by Dr. Martin Pall.  His theory and protocol need further clinical testing.

 3.  Methylation and reduced glutathione.  Dr.s Van Konynenberg and Nathan did a preliminary study of 60 individuals with CFS whose energy improved substantially after less than a year on their protocol of unusual supplements.  Instead of using synthetic folic acid, they directly employ substances active in the folate cycle such as 5-methyltetrahydrofolate and folinic acids.  They have documented through serum testing the normalization of reduced glutathione, SAMe, SAH, adenosine, and various active folates.  Some study participants recovered sufficiently to return to the work force.

 4.  Amino acids therapies, particularly intravenous administration of amino acids, has helped those who test low in serum and urinary amino acids despite adequate dietary intake.

 5.  All people with CFS have abnormalities in Kreb’s cycle metabolites. Through studies or increased monitoring of organic acid testing -- available through US laboratories such as Genova, Great Plains, and Metametrix -- we might be able to discover patterns revealing how this illness actually decreases the capacity to make adequate ATP.  That could lead to interventions that increase energy substantially enough to improve quality of life and return many individuals to the work force.

 6.  Dr. Sarah Myhill’s study of mitochondrial dysfunction and the protocol she uses to reverse it deserves further study in the U.S.

 7.  To control costs, we need to stop turning natural nutritional products into drugs just because a pharmaceutical company wants to market it.  This has happened in the past year with BH4 (tetrahydrobiopterin) and a pyridoxine, a natural, active form of Vitamin B6.   Restriction of products that have been available for generations is contrary to the principles of our democracy and free market system.  

 Even if XMVR turns out to be the cause of this devastating illness, we still need to understand how to help long-term sufferers repair and restore their damaged bodies.  My friends and I hope the government will be open to studies on non-toxic products that have the potential to support the immune system.  We call upon the government to look into the development of

  •  peptides that disable viral penetration into the cell, such as the one Dr. Candace Pert of Georgetown University discovered for the AIDS virus
  •  transfer factors and other markers of healthy immune function that could explain why exposed members of the healthy population are able to harbor XMVR without becoming symptomatic.

Finally, it is crucially important to revise the case definition of CFS.  The Canadian definition of M.E. is a more accurate description of our symptoms.  If XMVR doesn’t turns out to be the marker we seek, we need to look at functional markers including organic acids, amino acids,  and methylation markers in order to diagnosis new cases before irreparable oxidative damage occurs from overexertion.


  1. Excellent! So glad you will be testifying, and how great that your mom will be doing so as well. Both of you are quite articulate. Well done!

    My video testimony will be presented on the 30th. So, I won't be there in person, but I'll hopefully be there on a screen somewhere. :-)

  2. I'm so glad you and your mom are going to testify! Though I was limited to only 5 minutes, I found giving a personal testimony empowering when I had the chance.


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