disappointed
I am disappointed more emphasis could not be put on the other symptoms besides fatigue. But I do understand their need to focus. I understand also that fatigue is the most disabling part of the disease, so it is understandable that would be the primary symptom discussed. Sounds like the good doctor and the patient did get squeeze in some mention of other symptoms. Ok, disappointed, but I can accept it and understand it.
I can't understand why they would tell you to not discuss post-exertional fatigue. If the focus is fatigue in relation to this disease, you, the medical expert (even more than Dr. Oz) should be able to give your expert understanding of this illness in relation to fatigue. Post-exertional is a major part, if not a previous to XMRV possible diagnostic marker for CFS. It just doesn't make sense to me that they are focusing on the fatigue part of it but take off the table post-exertional fatigue. That doesn't sound like editing for space and audience appeal, that sounds like squashing medical expert information contrary to what their message is.
Well, maybe the hour-long interview with WPI helped. I mean, I have done interviews. And I am sure there was a lot of information given in one hour. I also appreciate their taking into consideration the physical limitations of the patient. (just adding evidence to the post-exertional fatigue problem. So they do seem to accept it, huh?) And any exposure that puts this virus with CFS is much better than the news coverage we have had for the last 15 years.
We also have to realize folks, if you can remember what it was like to be healthy, it is unreasonable for us to expect healthy people to get a full understanding of our illness.
Number one, it isn't their reality. They want to know enough to know if they should do something and if they are at risk. They have their lives with their interests and why should they care beyond that? Shows such as Dr. Oz are for those type people. Oh, it might trigger some mild curiosity in someone who doesn't have any personal interest. But they quickly move on to something else. They didn't become doctors or disease researchers because they don't have that much interest in the topic. That isn't bad. How much interest do we have in the study of ancient civilizations? Someone involved in that may feel some discoveries they found should have hour-long shows and the world should know because it affects how society developed. So let's remember that no one can know what it is like to be a black boy growing up in Harlem, except a black boy who grew up in Harlem. And no one can really know what it is like to have CFS, except..... And the public at large doesn't not care that much because it is not their reality. Same goes for people with CFS. It's not bad, it's just people must focus their time and mental energy in this crazy, information-filled life we have on earth. There are also many other diseases besides ours, all thinking there needs to be much more education of the public about their illness and more done to cure and prevent it. But, because of the outbreaks and other factors screams public health concern that the governments have obviously ignored because of bias, our cause for education and funding, I think, has more urgency and more validity, not to mention we have been the last on the rung for decades. But our voices are only a few with the multitude of other diseases needing attention, Alzheimers, Autism, just to name a couple.
Number two, our illness is complex. It's not as easy as diabetes. "My body stopped producing insulin so I have to take insulin and watch how much sugar I take in. The insulin is needed for my body to use sugar. And I have to test my levels all during the day. And ultimately I may lose my sight and have circulation problems in my legs because of it." Compare that to our illness with immune system abnormalities, neurological problems, fatigue, metabolic abnormalities, endocrine system abnormalities, reactivated viruses, digestive problems, etc. As the good doctor said, it just doesn't fit into a ten minute segment. How much time would it take for any of us to get someone else to understand what is going on with us and what it is like to live with this illness? I venture to say, it would take fifteen minutes to just explain what it is like with all the symptoms, and an hour or more to explain what is going on in our bodies. Even the doctors don't want to treat us, why? Our visits take so long. And that is with a doctor that knows about CFS.
So, the way I see it. The researchers are doing their part (those who are with us.) They have not slacked. I think it is up to us, especially since we can use the phone and e-mails and post responses after articles on message boards and blogs, to educate the world. We need to be working to get more media coverage. And I appreciate Dr. Oz giving us attention. We sure don't want to punish him after we called for him to do a show. It will not be perfect. But if you are frustrated as to why they can't get it all right, see Number one and Number two above. As one of my elders said in my congregation, when changing people, it is evolution not revolution.
I contacted 60 Minutes by e-mail twice. I was told to put it in writing (letter). I have yet to do that. I still plan to. I also contacted a freelance writer who has her stories published in a Health magazine that is published out of Florida and one in Alabama. She has pitched the story. We will wait and see. (reminds me, I need to let her know of Dr. Oz airing)
Michael Moore would be great.
And I was glad to see the ABC News story, which I didn't know about. Now let's keep the ball rolling folks.
Which reminds me, has anyone followed up on the blood supply being tested thing that was supposed to be in a report within a couple of weeks after the CFSAC meeting?
For all the things we feel powerless about, for all we can't do, getting media attention and hounding the news organizations with multiple efforts to get coverage is something we can do for ourselves. Part of it is a numbers game. The more they hear from us and the more of us they hear from, the more likely they are to give us attention. Squeaky wheel and all.
One more note, keep it civil. Don't make yourself sound neurotic with overreaction to their mistakes. In news media, mistakes are common. It's an information campaign we have here folks, not a blame game. We need the news media more than they need us. Let's work with them to get from them what we want. Let's not alienate them.
Tina