Discussion in 'General Treatment' started by maddietod, Feb 9, 2015.
This 50 minute presentation is broken into 3 parts for easy viewing.
I have only watched the first 3.5 minutes of video #1.
WHY does a voting member of the CFSAC insist on referring to this illness as chronic fatigue?
Very early in video #1 he asks the audience "How many here have chronic fatigue or know someone who has chronic fatigue?" (there is no way to see what their response was)
Shortly thereafter he mentions the IOM report is supposed to come up with a clinical definition of chronic fatigue myalgic encephalomyelitis.
Then he says there is controversy around the IOM and P2P in the chronic fatigue community....
It frustrates me that even though he mentions the controversy, he (and other members of the CFSAC) continue to use terms that are disparaging (chronic fatigue) of patients.
It was worth continuing. He did use that shorthand right at the beginning, but it quickly became clear that he knows what he's talking about. He didn't say chronic fatigue again. In fact he's insisting on calling it ME because the 'chronic fatigue' part of CFS is so demeaning.
OTOH, a friend called his office to maybe schedule an appointment for his bed-bound wife, and his fee structure is appalling.
@madietodd - can you give more details about the rest of the video?
I am sorry that Kaplan's fee schedule is prohibitive for your friend and his wife!
How did your friend come to consider Kaplan to treat his wife?
@Denise sorry, my memory is too poor to say much about the videos. He believes the big issue is brain inflammation, I remember that much! I just found it informative, even if I can't remember much. I hoped others might find useful information in it.
My friend is always, endlessly, trying to find a local doctor who can help his wife, who has severe ME and a concussion that is not healing. She is barely, and rarely, able to travel to local appointments, and so far he hasn't found a doctor who is able to help. I don't know specifically how he searched and found Dr. Kaplan.
I'm impressed. He clearly takes us, and this illness, extremely seriously. He also argued for adopting "ME" as the official name. He did begin the lecture by calling it "Chronic Fatigue," and my guess is that he did this for the benefit of sparking interest in his audience. He quickly put that name to rest within the first 5 minutes of his lecture, calling the "CFS" label "demeaning."
He stressed the importance of listening to patients and believing them, and he also brought up that we are frequently disbelieved and abused by doctors.
Based on @madietodd and @jeff_w's comments (thanks for them) I will do my best to view more of the video.
You can also try a Google Site Search
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