Chiari article a lifesaver
The May/June '99 Chronicle
might have saved my life.
The article on Chiari malformation motivated me to go to a neurosurgeon listed on the Internet. He agreed
to do a MRI, although I think he had some doubts. According to the MRI, I don't have Chiari, but I do
have three consecutive ruptured disks in my neck. One of these disks is pressing on my spinal cord. As
my father so aptly put it, "Now that can't be good for you."
Now the neurosurgeon is concerned
that I might fall or have an accident before the surgery. My condition is "dangerous." I've known that
for many years.
And this is where the name comes into play. I've seen five neurologists and many
other doctors. They all knew my symptoms (particularly progressively worse apnea and arrhythmia), but
once a doctor hears "CFS," that's it. All serious assessment of symptoms stops, the exam becomes cursory
at best and the appointment always ends with a recommendation that I seek counseling. It is a travesty
that a person could go from doctor to doctor for 11 years with a compression of the spinal cord and no
one even thought to look for it.
I believe I know when I ruptured the disks in my neck. Three months
before I got sick, I was in a car accident and suffered a whiplash injury. The day I got sick, Aug. 13,
1988, I went to the dentist. Perhaps tipping my head back in the dental chair pushed the disk material
against my spinal cord. I feel this diagnosis does not mean that I don't have CFS. Instead, I feel that
it means that all PWCs should carefully review their own condition and seriously consider an MRI of the
neck if they feel that there is any chance of such a problem being present.
Judy Rogers, Versailles,
Survey too limited
I was interested in the low response (6%) to the reader survey, which
you described as "extraordinary participation." Most surveys, like mine, are probably still bound within
that issue, back to back with articles I preferred to keep. And no, I was not going to make a special
trip from home for photocopying.
If you want to reflect the membership's opinions and experience
in a valid way, follow the rules: random selection (or the whole population), separate survey mailing,
prepaid response, limited scope. This approach would provide input that is useful for decision making
and data that is valid for making our case to others.
I apologize for not responding. As a former
researcher, I grant that I invalidated the survey and my right to complain. Overall, I think the
two most telling areas are the "priorities for the Association" and "what you count on from the
Chronicle." Even if I don't agree (some say I've become disagreeable with CFIDS), I anticipate each issue,
including the survey results. Thanks.
Karl Smith, Rockport, Maine
The response was indeed extraordinary, considering we asked our readers to tear out two pages of their
Chronicles or make photocopies and use their own envelope to mail it back to us. All direct mail
surveys suffer from the limitation of self-selection, but a 6% response is considered good even with a
prepaid envelope. This tells us that CFIDS Association members are especially interested in such surveys.
Granted, a telephone survey of randomly selected members would have been more accurate, but it would have
been prohibitively expensive and only a limited number of readers would have had the opportunity to tell
us their views. As we improve this process in future surveys, we will be considering carefully the things
that discouraged you from participating. Thanks again to all who did.)
Question about polio vaccine
In the news in mid-June was a CDC acknowledgement that the oral
Salk polio vaccine will no longer be used, due to danger from live poliovirus. (Post-polio syndrome is
nearly identical to CFIDS.) My father confirmed that I was in the first Salk trial in Michigan. I wonder
if anyone is researching the possibility that CFIDS might be the result of the oral polio vaccine, especially
in those of us who had the trial vaccine, which was soon stopped because the lab had not killed enough
of the virus?
Judy Kruger, Collingswood, N.J.
We all need acceptance
The letter "Looking for Acceptance" in the May/June '99 "Readers'
Forum" tore my heart apart. I cried as I read it to my husband of nearly 40 years who, as my rock, stalwart
backer and caregiver through the past 14 years of illness, has seen this happen to me over and over again
when undergoing tests for a "real" illness. Once that "real" illness doesn't show up, you're right back
where you started from-with all the symptoms but not with a diagnosis that anyone will put down in your
records. It always comes out "fatigue and malaise." I wish that were all there were to it. Like
the writer of "Looking for Acceptance," I don't want or need to be labeled with something I don't have.
I have sufficient diagnoses to last me two lifetimes, but I do need to know why I really have the symptoms,
struggle and physical pain. Give a name to our disease that means something so we can have a
little respect, acceptance and understanding.
Kay H. Benton, Farmville, Va.
Name still a puzzle
On the subject of a name change for CFS, I have "voted" in surveys for
myalgic encephalopathy, but after reading the article in the May/June '99 Chronicle,
I am more confused. I don't really care what it's called, or even how I am diagnosed, as that won't change
my symptoms or make me feel any better. I have friends who make a job of going to doctors; they deny they
have CFIDS or FMS and think they must have something treatable. So far, none of them has found they have
any other disease or feels better.
The name change can wait for the one test (which I have heard
for a couple of years now is a possibility) that will show we all have something 100% in common and not
any other disease. Then name the disease after the researcher who finds this test.
Valley Springs, Calif.
Please explain suicides
The Chronicle has been my lifeline since I got my first
tentative diagnosis in 1988. I'm now almost completely homebound in a small town. My doctors are sympathetic
and willing to learn, but the Chronicle and newsgroups have made me more informed about my disease
than they are. You've become my medical scripture, in effect. Perhaps that's why it hits me particularly
hard when you report, as you did in the May/June issue, that a patient leader has committed suicide
(page 18, Jim Leroy). It seems we got similar news just an issue or two ago.
As one who often battles
the temptation to commit suicide, this is tough news to take. These PWCs are the most informed about current
research, the medical community's attitude and the government's commitment. If they can't find any hope
to keep them going, what are my chances?
I realize everyone's case is different. However, I note
that your materials page includes a suicide prevention packet. I conclude you're well aware of the danger
that your readers will just give up.
I ask you to consider either eliminating these announcements
or make them more lengthy. Tell us some of the special circumstances. Tell me this person was in unbearable
agony from fibromyalgia (I'm OK there) or that their caregiver just walked out (fine there, too), or they
had no psychiatric support for their depressive episodes (got that). Tell me something that makes
that PWC different from me. This is one time I don't want to identify with another sufferer.
T. Choi, Hilo, Hawaii
C-ACT gives me purpose
I have been a C-ACT advocate for several years. C-ACT and The CFIDS
Association have been my lifeline, virtually the only support system I now have. My family has written
me off, and, of course, my doctor continues to believe it is only depression. I'm so isolated and so lonely.
I'm not saying this for pity but to tell you how important you are to me in my life with this illness.
C-ACT gives me purpose. Even though I sometimes have to wait for days or even weeks, when I finally
write the letters and send them, I feel I have accomplished something worthwhile. Actually it has spawned
a hidden interest in politics, and if I ever get my health back, I would somehow like to get into public
policy. So it hasn't all been in vain.
When I participated in a support group (I have since
moved to a very rural area), I encouraged people to write to their senators and congressmen. When I explained
that each letter represents 400 voices, people took notice. One person can make a difference! I used to
be somewhat of a passive person. Now my motto regarding this and other life issues is: "If you're not
part of the solution, you're part of the problem." So hang in there, all of you.
Carol Ives, Canton,
(Editor's Note: To join C-ACT, send your name, address and E-mail address (if applicable)
to the Association.)
Thanks for a good laugh
Thanks so much for publishing the piece on "hysterical medicine"
(by Frank Albrecht, July/August '99). Not only did it give me a good laugh, but I can think of a few victims
of this problem that I intend to send it to.
Linda Sleffel, Columbus, Ohio
Annual Report Corrections
The following donors were inadvertently omitted from the the Associationís
1998 Annual Report: Sponsor category ($50-$99)-- Maggie McKenzie and CFIDS-New Mexico; Benefactor
category ($10,000-$24,999)--Pro Health, Inc. and CFIDS & FM Health Resource. In addition, Lea Rhodes,
mistakenly listed as a Pacesetter donor ($100-$499), should have been listed as a Patron ($500-$999).
We apologize for the omissions and gratefully acknowledge their support.