usedtobeperkytina
Senior Member
- Messages
- 1,479
- Location
- Clay, Alabama
From the beginning, Dr. Clayton has shown great deference to the patients. When the first public meeting happened, I would guess half the comments from the public were telling them not to continue or just choose CCC and that's it. It took a lot of patience for her to show respect to each one, even though it was not going to help them in their task. In fact, they had particular questions they wanted to have addressed in public comments that they felt would be helpful. But much of that valuable time was on things that were against, the IoM committee and what it was doing. This took compassion, empathy, understanding, confidence and wisdom.
When the patient panel spoke in the second public meeting, she had sincere words of understanding and appreciation for each of them. And since the report has come out, she has said that they listened to how the patients describe the disease and read all the public comments. Many researchers think the answer is in a test tube. She evidently agrees with Osler, "If you listen to the patient..."
And now she brings her creds and passion to this disease. Clearly her compassion has made her upset when people say, "I'm tired too." (She said as much in the briefing where the report was released.) To have someone not intimately involved with patients get upset at those statements is quite unusual.
I think this shows the best strategy is to educate the ignorant who have the power instead of trying to block them or stop them. Look at the FDA and P2P and IoM reports. The science is self-evident, as Dr. Clayton said. I appreciate her role as chairman as she was clearly able to lead the diverse group to a unanimous accord. She was evidently able to get them to see the truth as a big picture instead of letting them get bogged down in the weeds. She is amazed at the process and how they were able to unite. I'm amazed at her ability to get Klimas, Lerner, Rowe, Keller and Natelson to agree on anything.
I appreciate Dr. Clayton saying, "Take it, use it, improve it." I agree. We need to get it out there and then improve it as science and experience with it reveals how to improve it. Waiting a few more years before we benefit from what the report itself does for us will only delay and possibly kill the momentum and opportunity it gives us now.
I want to also say that I am impressed with Carol Head. This is nothing against Kim McCleary. I thought she had some important skills and history that served CAA well. But in person and in the public, she was not warm. Carol is dignified, a patient herself (although much better, I think she still has some symptoms) and comes across as compassionate. She is not defensive, which allows her to acknowledge, give respect to those who don't like the organization.
I also like Morgan Fairchild. To be honest, I, like probably others, wondered in the midst of her describing her condition if she really had the disease. But she gave enough explanation that I saw that finger print pattern that matches my disease, particularly having to write everything down.
I also know that because I do freelance writing work that some think I may not have the disease. But my husband does 90% of domestic work while I'm typing on my tablet in bed. I still can only work 20 hours a week or less. But most don't know how much I work. She mentioned a supportive boyfriend and that she did nothing else but work, which also allowed much rest time. (By the way, how many others that she worked with knew she had it?) I bet she could also pay for someone to do her grocery shopping. I know she didn't say that, modesty would require her not to explain all the paid helpers she had. But I'm sure that helped.
I can't help but wonder why she has been silent. (I haven't seen her in anything recently, so I wouldn't think she'd be afraid of her career being affected.) No matter the reason, she's working for us now. And good for SMCI for getting her to help. (And she has a relationship with Fauci? Who knew?) Maybe the IoM report spurred her to come forward. If so, then I'm glad. Maybe there's more to come from the IoM report or from it becoming mainstreamed in medicine.
I also want to say that it's not realistic we're going to get a severely ill spokesman. A severely ill person does not have the ability to be a spokesman. And we sorely need a celebrity spokesman. I certainly don't want to discourage anyone with a name from speaking about their experience. It's the only kind of spokesman we could have.
When the patient panel spoke in the second public meeting, she had sincere words of understanding and appreciation for each of them. And since the report has come out, she has said that they listened to how the patients describe the disease and read all the public comments. Many researchers think the answer is in a test tube. She evidently agrees with Osler, "If you listen to the patient..."
And now she brings her creds and passion to this disease. Clearly her compassion has made her upset when people say, "I'm tired too." (She said as much in the briefing where the report was released.) To have someone not intimately involved with patients get upset at those statements is quite unusual.
I think this shows the best strategy is to educate the ignorant who have the power instead of trying to block them or stop them. Look at the FDA and P2P and IoM reports. The science is self-evident, as Dr. Clayton said. I appreciate her role as chairman as she was clearly able to lead the diverse group to a unanimous accord. She was evidently able to get them to see the truth as a big picture instead of letting them get bogged down in the weeds. She is amazed at the process and how they were able to unite. I'm amazed at her ability to get Klimas, Lerner, Rowe, Keller and Natelson to agree on anything.
I appreciate Dr. Clayton saying, "Take it, use it, improve it." I agree. We need to get it out there and then improve it as science and experience with it reveals how to improve it. Waiting a few more years before we benefit from what the report itself does for us will only delay and possibly kill the momentum and opportunity it gives us now.
I want to also say that I am impressed with Carol Head. This is nothing against Kim McCleary. I thought she had some important skills and history that served CAA well. But in person and in the public, she was not warm. Carol is dignified, a patient herself (although much better, I think she still has some symptoms) and comes across as compassionate. She is not defensive, which allows her to acknowledge, give respect to those who don't like the organization.
I also like Morgan Fairchild. To be honest, I, like probably others, wondered in the midst of her describing her condition if she really had the disease. But she gave enough explanation that I saw that finger print pattern that matches my disease, particularly having to write everything down.
I also know that because I do freelance writing work that some think I may not have the disease. But my husband does 90% of domestic work while I'm typing on my tablet in bed. I still can only work 20 hours a week or less. But most don't know how much I work. She mentioned a supportive boyfriend and that she did nothing else but work, which also allowed much rest time. (By the way, how many others that she worked with knew she had it?) I bet she could also pay for someone to do her grocery shopping. I know she didn't say that, modesty would require her not to explain all the paid helpers she had. But I'm sure that helped.
I can't help but wonder why she has been silent. (I haven't seen her in anything recently, so I wouldn't think she'd be afraid of her career being affected.) No matter the reason, she's working for us now. And good for SMCI for getting her to help. (And she has a relationship with Fauci? Who knew?) Maybe the IoM report spurred her to come forward. If so, then I'm glad. Maybe there's more to come from the IoM report or from it becoming mainstreamed in medicine.
I also want to say that it's not realistic we're going to get a severely ill spokesman. A severely ill person does not have the ability to be a spokesman. And we sorely need a celebrity spokesman. I certainly don't want to discourage anyone with a name from speaking about their experience. It's the only kind of spokesman we could have.
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