Here is my comment on Dr. Lapp’s blog post from yesterday, What Are The Most Important Things To Remember About CFS/FM? The comment is awaiting moderation.
I am a patient and I appreciate your contributions and your commitment to helping the ME community. But I had a hard time with this piece. It touches the it’s-all-in-your-head nerve with me and other patients. There is no doubt that emotional equilibrium (acceptance and attitude) can be healing for all chronically ill. And, of course, pacing (adaptation) is crucial to avoid further deterioration for ME patients.
But I think it is very important for the few experts in the area to keep in mind their potential audience and to be fully aware of their responsibility in not painting a picture of the illness that is easily misunderstood. Patients are ridiculed, shunned, blamed, disbelieved and judged by their family, friends, neighbors, colleagues and physicians every day. After reading this blog post, it might be easy for those “non-believers” to feel justified in their unfair treatment of patients. After all, if the big difference between remaining ill and recovering is acceptance, attitude and adaptation, then it must be a patient’s fault that he or she has not yet gotten well.
Why not first establish how serious this disease really is and give a couple of examples of people’s incredible limitations due to the illness, so that whoever reads this post written by one of the specialists, you, can fully appreciate how hard it is to accept and to adapt? And why not stress, just to make sure there won’t be any misunderstanding, as there are already way too many when it comes to ME, that while attitude is important, ME patients have lots and lots of abnormal test results; you know, test results that cannot be explained by false illness beliefs? Also, why not mention that “recovery,” which you mention, is extremely rare?
Again, I am not contending that emotional stress is toxic for ME patients and that we need to minimize it whenever we can. But I worry about an article being out there that was written by a specialist and that promises in its title to explain the most important things about ME without even hinting at how serious this disease is.
Ok, so now after speaking my mind, I will work very hard on going to my Zen place again. I promise.
PS: I am using the term ME instead of CFS, as many patients find the name Chronic Fatigue Syndrome, or worse, chronic fatigue, derogatory and misleading.