Five years may seem like a long time to plan ahead for a government
research process, but it is short indeed when compared with the time
many people with CFS have been ill.
Over 1.5 decades ago, I attended meetings of the CFS Inter-Agency
Coordinating Committee meetings, later called the CFS Coordinating
Committee, and now known as the CFS Advisory Council. Then Assistant
Secretary for Health for HHS, Dr. Phillip Lee, thought CFS was a
disease that needed special attention. He started this
Congressionally chartered group to get to the guts of the
problem. He was a friend to those of us with CFS; our last friend, it appears.
People who are among the stricken have been trying to tell the CDC
(and NIH) what we needed to happen for at least that long. We have
gone to Congress with our pleas for assistance. We have seen money
appropriated for CFS research spent on other projects. We have
gotten a lot sicker. We still have none of the things we have been seeking.
I don't expect a lot of change in the next 5 years from the CDC
program, frankly, because the same people are still plowing the same
rows. I'd feel a lot more confident if new horses were at the hitch.
However, you are asking for input to this 5 year plan, and I'm going
to give you all some.
First, I wish to comment on the External Peer Review Report on the
last 20 years of the CDC's work on CFS. The report was overwhelmingly
complimentary of the work at CDC, finding that only their planning
process was lacking. Thus we are here today.
With all respect to the reviewers, I cannot let these three
statements in that report stand without
* "Gene expression studies ... have led to interesting results."
* Gene expression studies are intellectually interesting, but
all funds spent on those projects have led to no positive results
that can be applied to the CFS public health problem. Perhaps as
pure research on a sample of people with CFS and without, I can
acknowledge the "interesting results." In whose lifetime, however,
will these studies actually help people who are ill?
* "There is much talk about approaching the study of complex
chronic illnesses by using a "biopsychosocial model", the CDC
research team has actually "walked the
* The "Biopsychosocial Model" is another term for "Mind-Body"
model, or the BPS (biological, psychological and social) model of
what influences a patient's recovery and/or functioning. I have
learned to be very wary of these terms, because they usually end up
in discussions of Cognitive Behavioral and Graded Exercise Therapy.
I personally believe that one's outlook on one's life does influence
how one copes with this disease. But no amount of exercise or
vigorous yay-saying can get a person with the severest form or phase
of CFS out of bed and back to work. This is like stating that CBT or
GET can get people with MS or ALS back on their feet and to work. I
do not believe that any U.S. health institution deserves
congratulations for their investment in CBT and GET as it applies to
severely ill people with CFS.
* "The panelists also believed that the CDC was the best placed
institution to lead the establishment of both research and
educational networks, both nationally and
* I must beg to differ with this statement. The CDC is a
public health institution that should be performing work that
directly affects the nation's well-being. Since no amount of work
performed at the CDC in the past 20-plus years has had a positive
effect the health of chronically ill people with CFS, it is time to
move the leadership for this work to another Federal institution.
U.S. taxpayers have spent money for the work done so far at the
CDC. So the data that has been developed must be shared with outside
researchers, who may be able to untangle the surveys you have done
where you mixed apples - people who do meet an internationally
recognized definition of CFS - and oranges - people who have chronic
fatigue only, such as those with diabetes, cancer, anemia, and
The CDC must show some interest in the results of CFS researchers
that are not funded through the CDC program. CDC results and those of
other U.S. researchers are often at opposite ends of the spectrum of
analysis. There is a reason this is the case. You are too heavily
entrenched in what you have done in the past.
The old leadership of this program at CDC MUST GO. It is time that
the CDC realizes that your "successes" have been internal to your
institution, and the results of outside researchers have been orders
of magnitudes above your own. The department this research is
located in is even paradoxical. The CDC's CFS web site does not
acknowledge the role of infective agents in CFS, yet the program's
staff is located in the Chronic Viral Diseases Branch. No wonder it
is impossible for you to communicate in any meaningful way with
people who are sick with CFS.
Second, I want to inject some personal remarks on the hell I have to
live in every day of my life because of the lack of decent science
This last one third of my entire life, since I fell ill in November
of 1989, has been spent ping-ponging from one medical expert to
another, trying to find help so I can get over this disease and
return to my work. I enjoyed my work as much as any of you at the CDC
must. Over time, I have realized that I will never return to work.
I've been robbed of that aspect of my life, as well as
my interactions with family and friends, my plans made before
illness struck me down, to travel, to further study several
disciplines like philosophy and conduct research of my own in my
chosen academic field, astrophysics. Those ambitions were dashed
when CFS struck me down. I can't even read a short story coherently
now, and understand what I have read 10 minutes later.
And I have been kept down through the ineptness and corruption that
is my best characterization of my government's weak attempt at
handling this disease. To this day, I am ashamed to say that I have
CFS. The CDC has done nothing to remove the stigma of this disease
from the public, and even the majority of the medical providers I
consult are unforgiving in their attitude toward my diagnosis. My
government MUST take my disease out of your hands and find a better steward.
I should not have to school my doctors on CFS by bringing them
research papers I have found through the Internet. It shouldn't be
up to me to ask them to decide whether the results of a paper might
help me or apply to me. My cardiologist scoffs at the possibility
that my 4 separate heart problems might be CFS-related. Yet there
are research results that might support that conclusion, and my
treatment might be different if it is so.
My life is hell. Suicide has seemed my only option during several
particularly horrible relapses. Only my personal faith has kept me on
this side of the sod. That, and my stubborn, some might say
relentless determination to stick around for the show.
Finally, here are remarks about the changes I hope will happen now
that we have a new President.
When the Obama-Biden administration was transitioning into the White
House, they asked for input on all sorts of subjects from groups
across the nation. Groups that might meet up in someone's living
room and author a piece of guidance that might be included in the
next 4 years of governance.
Several people with CFS "met up" in a virtual living room, and wrote
a paper for Mr. Obama's HHS transition team that summed up what is
needed for our health to improve and to see some preventative
measures taken to reduce the number of people who have CFS.
Copies of this paper are available on the HealthReform.
under search terms CFS and Myalgic Encephalomyelitis. The paper is
the only one featured from Delaware. It's just a few pages long, and
I hope each of you will read it.
In it, we highlight just a few things we want to see happen. Among
those that are appropriate to CDC are:
* Instead of mangling the definition of CFS once again, just
adopt the Canadian Consensus Document for diagnosing and treating
* Accept the World Health Organization'
"CFS" within the chapter on neurology, at G93.3, including the
designation of Myalgic Encephalomyelitis (M.E., as CFS is known in
several other countries.)
* Focus on biomedical research instead of psychosocial. The germ
theory of disease is over a century old, in it's well known Western
form, and over 2 millennia old as it was known to Roman
physicians. Many people fall ill with CFS beginning with a flu-like
illness. I suggest that the gene expression variants found in CDC
research may be due to the influence of outside organisms that have
not yet been associated with CFS. Your chase for a BPS underpinning
of CFS is not fruitful.
* Whoever is in charge of understanding the difference between
fatigue associated with infective and other physical diseases, and
major depression, which may have fatigue as one symptom, please come
to the CDC and enforce this understanding. Including even a single
person in your data aggregation studies who suffers from clinical
depression skews your results fatally. Your study cohorts in both
Georgia and Kansas are flawed because of the inclusion of people who
do not have CFS. A researcher can form a group that is littered with
selections that ruin the outcome of a purely scientific analysis. In
my universe, we call these distortions of study subjects "selection
effects" and we diligently try to avoid them. The CDC researchers
seem to want to build them into their groups. That is not science,
it is just a way to provide an underpinning to a pre-determined
outcome. In any event it is bad science.
In conclusion, I want to go back to one of the External Peer Review's
suggestions that CDC work more directly with pharmaceutical companies
that may show interest in bringing new drugs to the market for
diseases like CFS/ME.
There is one drug currently being withheld from the market by the
FDA, called Ampligen, that has a proven track record - in other
countries - with symptom alleviation in people with severe CFS and ME.
Perhaps CDC can show some leadership in getting that drug marketed at a reasonable cost in the United States. Ampligen is an antiviral
with specific benefits to those of us who have a certain variant of
HHV-6a that is an apparent cause of our illness. This is a "boots on
the ground" project that you could run with right now, and make a
difference to people who are sick.
No number of incorrect web pages nor meetings nor announcements of great findings in research will do more for the patient community than just getting some treatments available.
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