Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Here's an idea I had, based on my own experience with doctors...why not ask doctors who treat us if they know what the symptoms of ME (CFS if you prefer that name) are?
It's a simple, direct question, and it seems to me we certainly have every right to know whether our doctors know what they are doing, if we are giving them money and letting them treat us.
If they just rattle off the four diagnostic markers used by the CDC, say no, not just those...what are the basic symptoms ME patients deal with? If they don't know, then maybe it is fair to ask ourselves why we are entrusting ignorant people with our medical care, since they are obviously not qualified to treat us.
This is a serious topic, I have come to believe that most of the doctors we encounter are woefully ignorant about our illness, and they often go off on expensive and time-consuming wild goose chases pursuing explanations for symptoms that have already been diagnosed when we got our diagnosis of ME or CFS.
What does everyone think about this? Let's discuss this.
It's a simple, direct question, and it seems to me we certainly have every right to know whether our doctors know what they are doing, if we are giving them money and letting them treat us.
If they just rattle off the four diagnostic markers used by the CDC, say no, not just those...what are the basic symptoms ME patients deal with? If they don't know, then maybe it is fair to ask ourselves why we are entrusting ignorant people with our medical care, since they are obviously not qualified to treat us.
This is a serious topic, I have come to believe that most of the doctors we encounter are woefully ignorant about our illness, and they often go off on expensive and time-consuming wild goose chases pursuing explanations for symptoms that have already been diagnosed when we got our diagnosis of ME or CFS.
What does everyone think about this? Let's discuss this.
But to hear doctors there is no-way thats possible. I mean they gave me the ELISA and Western Blot test!! This disease is so complex that I am positive that half the people who have CF and Fibro have Lyme instead and if you sis any research on it you would see too.
So many people are being told that they have other things because our docotrs are narrow minded and think we no nothing about our own bodies. If they would have listened to me 10 years ago when my symptoms first arrived I might have a life still!!
I have heard there are doctors out there who encourage their patients to learn as much as they can and actively participate in their care. Let's hope that mode of caring for patients becomes the norm some day.
But I would add to my original post that, as sirow stated, you have to be careful what you say to doctors, they will "put the word out" on you. I have heard of that happening in my area...a patient died for lack of care because of it, according to a story in our local newspaper.
As many of us do (or don't) I do NOT bring up CFS unless a doctor asks me why I'm not working (which is really none of their business.) I usually ask flat you, "Do you believe in Chronic Fatigue Syndrome?" If they give me some line about chronic fatigue I never go back again. If they give me that "you're a nutcase" speech, I never go back again.
I don't have time to waste with these people. Really. I have to be kind to myself and surround myself with others who are as well. ALL of us need to do that no matter how hard it is. We CAN fire doctors. They work for US (ok, they work for insurance companies and Big Pharma but I can still chose which one I want to go to!!!)