Dr Fred Friedberg, president,
Subject: New Announcement
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.