Dr Fred Friedberg, president,
IACFSME
Subject: New Announcement
Dear sir,
My name is Kati D I am a patient with ME since November 2008.
I was then a registered nurse, and my health status changed forever
following a primary EBV infection. I never recovered. It got worse
with a bad case of necrotic gallbladder some 4 months later, and my
symptoms just worsened from there. My family physician could not
explain why I was not recovering from my surgery and felt I was
depressed. “This is how you treat chronic fatigue”, she said.
I certainly understood my diagnosis more than she did, and I quickly
learnt from my peers that the chest pain and shortness of breath were
not benign and that I needed to be horizontal as much as possible.
This
week I have learnt from your press release that the international ME
association who gathers the best scientists in the field will publish
a quarterly peer reviewed journal called “Fatigue: Biomedicine,
Health and Behavior”. It is with dismay that I am writing to you,
trying to understand why the IACFSME desires to perpetuate the stigma
of fatigue in ME patients, and continue studying fatigue both
biologically and psychologically.
Fatigue
exists in other diseases. AIDS, cancer, MS, lupus, cardio-vascular
patients all experience fatigue to varying degrees. However, fatigue
is addressed by treating the root cause of the disease, through
anti-virals and anti-retrovirals, cardiac surgeries and cardiac
drugs, chemo agents. In the case of ME, scientists have not yet found
a biomarker or cause of the illness, but the work of several
scientists, notably Jonathan Kerr, Nancy Klimas, Dr Lerner, Montoya,
Peterson, etc have given some important leads. We need more work.
I
and several of my fellow patients who are awaiting for treatments,
are worried that a journal about fatigue may not be the right
direction, and wonder how this came about- and whether this has been
initiated by others who may not understand our disease well or may
have an agenda other than finding biomedical treatments for patients.
As
you may understand, patients with AIDS, cancer, MS, lupus and the
like, are not helped by cognitive behavioral therapy, but usually
improve with proper biomedical treatments. Why are patients with ME
so different and need to be subjected to CBT and GET, and subjected
to clinical trials on that regard, and why is IACFSME planning to
host these authors in this new journal called Fatigue?
I
haven't signed up for this illness. I am particularly ashamed today
to have such illness that doesn't have recognition, respect, and
credibility from most physicians, but worse, it seems that IACFSME is
following the steps of those who have stigmatized us for the last 3
decades, notably the CDC.
I
am sick, not tired.
Sincerely,
Kati D, British Columbia, Canada.
Currently receiving Rituximab for this disease.
