I'm putting this up, at least temporarily, though it can't compare with Tom's or Laurel's. Maybe someone else will be inspired to write and say things better
To the CFSAC Committee, October 29, 2009
Im not a great writer, so Ill just be blunt. I know it is possible for a government-paid team of scientists to do excellent work in applied science, because I worked with such a team for ten years before I got sick.
I know that this disease, Ill call it ME, because it certainly isnt CFS as currently defined, is contagious, because I caught it. At the age of 46, my health problems consisted of sinusitis and plantar fasciitis.
I used to handle stress well. I enjoy competition, used to stay up all night working for tests and military exercises, and made my own way in the world. The year before getting sick, I purchased a retirement townhouse in a resort area. I wasnt planning to cut my income by 2/3 by having to go on disability.
The fact that the CDC recommends no tests or treatments other than GET (graded exercise therapy) and CBT (cognitive behavioral therapy to deal with abnormal beliefs about illness) has had financial repercussions for me. And for everyone else I know with this disease.
What it meant to me is that my long-term disability insurance would not pay. I qualified for Social Security Disability, but many of my medicines are not covered because the treatments and tests I need are not recognized by Medicare as medically necessary. I have to travel to find doctors who are willing to treat ME, and this is costly and difficult.
As you are aware, a lot of research has been done outside of the CDC. Quite a few conditions have been found. Many treatments have been in use for years, such as powerful antivirals for active viral infections and long-term antibiotics for stealth bacterial infections. If it were not for these treatments, I doubt I would still be alive.
I lost my faith in the CDC as a protector of the people of this country and of humanity in general. I watched as research monies were diverted, independent research was discredited, ridiculous methods were used to pick the subjects of studies, definitions were changed, harmful treatments such as GET were touted as the way to recovery, and the mission to protect the public was ignored. I believe Dr. William Reeves should be held accountable for this failure.
Personally, I tried GET five times in eleven years. This last time, I went to physical therapy and wore a finger pulse monitor to make sure I was not getting into aerobic range. I managed to go to most of the appointments, two per week, until a relapse in the fifth week. That was two months ago, and I have recovered to the point where I only have to sleep two or three times during the day. But my immune system took another beating as Ive since developed a new infection in the bowel and some kind of viral infection that lingers.
I always exercised. I miss it so much. But it sets me back, no matter how careful I am.
Exercise is a dangerous therapy when your heart does not recover between beats. It should not be recommended as the main treatment for CFS until research is done to discover when it is harmful. It is such an easy out for the CDC to say we are exercise-phobic, and it is such a lie.
Im not going into CBT. Though Ive been in psychotherapy for most of my illness, my therapist believed that my illness was physical in origin. She told me You would never have chosen this; all of your self-esteem came from your work.
I am not depressed, but sometimes feel really down. It feels like Im dying and there is no help. Kafkas story, The Metamorphosis, when a young man wakes up as a giant beetle, unable to communicate with fellow humans, is descriptive of the dismay that overcomes me when dealing with one of the many doctors who believe that CFS is psychological. It is humiliating, but the worst thing is, I dont get the help I need.
I have also seen doctors who do original research. I am so grateful to these doctors and to the independent research organizations and foundations which have been formed to fill the vacuum left by the CDCs ineptitude, or deliberate malfeasance.
Many of us struggle just to live, acquiring more infections as time goes on. Many dont have money to travel for treatment or to pay for medication. I have lost friends who fought so very hard to live, who had so much to offer, and who didnt have to die.
I will just ask you, as a former government employee, to serve those who need you so much. My story is not in the least remarkable among those with this illness. We have all been treated so unfairly. Far more frightening is that refusing to do real research into physical causes has put everyone at risk. Its bad enough for those of us already sick, but what of those who are unprotected, but vulnerable, who could be saved this nightmare? What about the mission?
CDC seeks to accomplish its mission by working with partners throughout the nation and the world to
detect and investigate health problems,
conduct research to enhance prevention,
develop and advocate sound public health policies,
implement prevention strategies,
promote healthy behaviors,
foster safe and healthful environments,
provide leadership and training.
With my thanks for your attention,