OneWaySurvival
Senior Member
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Not a big fan of Chat (tried to follow the temp. chat and get overwhelmed), so I'm hoping occasional comments get posted here.
I'll throw a couple points out.
After the 10am SOK summary by Dennis Mangan, several panel members asked very good & pointed questions. Examples:
Nancy Klimas asked why CDC (and other "official" govt. sites) can't update their websites with better information (many panel members echoed this sentiment and wondered if they can help reveiw these sites and make recommendations on how to update). She told how a patient just yesterday showed her a 19 page rejection letter from Aetna about why they won't cover ANY tests or treatments EVER for ME/CFS unless it's psychological or CBT treatments. She said Aetna cited info from 1993 that is still on the CDC website!
Dr. Houghton complained about lack of funding. Mangan gave a confusing govt-speak response that didn't answer the question directly.
Dr. Lenny Jason asked the NIH colleagues who came with Dennis Mangan (flanking him on either side) to explain what their perception of ME/CFS is within their specific departments. One of Mangan's NIH colleagues (young guy with dark hair and beard) said something very irksome. I could have misunderstood since it went unchallenged by the panel. I wish the videocast let you pause or rewind! But I think he said "old people get tired a lot too, so there is probably some overlap with what is causing people with CFS to get so tired." Uggh! I hope somebody in the public comment section blasts this one.
Public comments now on...
I'll throw a couple points out.
After the 10am SOK summary by Dennis Mangan, several panel members asked very good & pointed questions. Examples:
Nancy Klimas asked why CDC (and other "official" govt. sites) can't update their websites with better information (many panel members echoed this sentiment and wondered if they can help reveiw these sites and make recommendations on how to update). She told how a patient just yesterday showed her a 19 page rejection letter from Aetna about why they won't cover ANY tests or treatments EVER for ME/CFS unless it's psychological or CBT treatments. She said Aetna cited info from 1993 that is still on the CDC website!
Dr. Houghton complained about lack of funding. Mangan gave a confusing govt-speak response that didn't answer the question directly.
Dr. Lenny Jason asked the NIH colleagues who came with Dennis Mangan (flanking him on either side) to explain what their perception of ME/CFS is within their specific departments. One of Mangan's NIH colleagues (young guy with dark hair and beard) said something very irksome. I could have misunderstood since it went unchallenged by the panel. I wish the videocast let you pause or rewind! But I think he said "old people get tired a lot too, so there is probably some overlap with what is causing people with CFS to get so tired." Uggh! I hope somebody in the public comment section blasts this one.
Public comments now on...