Discussion in 'Action Alerts and Advocacy' started by Nielk, Dec 3, 2014.
To watch the webcast go HERE
It was supposed to start 5 minutes ago,
The meeting agenda is HERE.
Is anyone getting video, or just a slide?
Just a slide and "voice". Stating that this is a webcast is deceiving. All it is is an audio that we can listen it to, if we have a computer. There doesn't seem to be a dial in capability.
In addition, the slides are jumpy and not clear at all.
The resolution is REALLY low. And the audio has way too much background noise.
This is such a challenge to follow. I can barely hear it.
Jennifer Spotilla is the patient commenting first.
She's talking about the prior CFSAC recommendations being altered after the meeting, by two people, in violation of federal law.
"Why is the work of this committee being repeatedly undermined by HHS staff?"
Also a problem with not enough notice being given of something or other, also in violation of federal law.
Jenny isn't holding back. I wish I could see the look on their faces.
The next patient: Denise Lopez Mohano - Repeating the complaint of the lack of notice.
Two sick sons, with ME/CFS.
She wants pediatric experts involved in meetings.
She's also upset that work on orthostatic intolerance was excluded from an evidence review.
She's also calling on CFSAC to step and be proactive, as did Jennifer Spotilla.
If you can use headsets, it will be much easier to listen in.
Jennie Spotila just gave a very strong testimony admonishing Nancy Lee for changing CFSAC's recommendations - illegally.
Next patient is Katie Fairman: No, it's Mary Dimick speaking on behalf of an anonymous patient.
She's talking about the political issues and deliberate muddling of the issues.
She's complaining about the studies regarding biological evidence being excluded from the evidence review. Also the muddled definitions of ME/CFS focusing on fatigue.
They're ignoring experts' call to adopt the CCC, etc, and making numerous violations.
HHS response has nothing to do with the science, and has not made any difference in improving patients' lives.
Jennie Spotila's testimony HERE.
The next patient is Lisa Petrason: Discussing Lake Tahoe, and the bad label definition resulting from it (CFS).
She's worried that HHS is absorbing ME into the CFS umbrella, thus removing the definition of proper ME. She wants CCC adopted, and/or a separate ME category with its own definition.
The definition of ME should not be changed to the government's definition of CFS.
A woman named Laurie Kroger from PANDORA, but speaking as a patient.
Upset about shenanigans pulled by officials.
Criticizing funding, silencing of patients, failure to help patients, and initiatives causing harm to patient.
Wants the name "ME" and the CCC definition, clinics of excellence, bio education of ME in medical schools, change websites to reflect the complex reality of the disease, include more patient and expert input, etc.
Next patient is Joseph Landson: Discussing a patient registry.
Wants to know how it will be used: better understanding or just throw the research away? P2P has thrown away a lot of work already. Will broad and vague definitions be used like P2P is?
Will it reflect patients or a preconceived notion about the illness.
Will it replace existing centers which currently dominate ME/CFS - the centers of ignorance using psychosocial definitions. Will in replace centers of arrogance and cynicysm.
Next patient is Eileen Holderman : She has complete opposition to IOM and P2P efforts to redefine ME.
Our experts have a research and clinical definition: CCC.
HHS has created erroneous definitions, which include patients who don't have ME/CFS.
They are causing harm and creating waste. Work by the experts in being buried.
Misinformation should stop being disseminated by the government.
The P2P and IOM should be stopped by this committee.
Next is Jeanette Burmeister: Discussing her FOIA request and successful lawsuit, plus attorney fees won.
HHS wasted time and government money by failing to act as required in response to the FOIA and lawsuit.
They were in violation of law by failing to disclose the requested information.
They still have not fully complied, and she must ask the court again to enforce the order or find them in contempt of the court.
Last patient is Matina Nicholson: Thanks to the ME/CFS experts who have been helping us.
Now addressing HHS: our disease is not CFS - it's complex multi-system, immune, neurological etc.
Opposes IOM and P2P and misinformation on the government websites, which causes problems when she goes to doctors.
Our experts are the ME experts, and should be listened to.
Complaining about the lack of funding, especially in comparison to other problems.
IOM and P2P are ignoring small studies, but there isn't enough funding for larger biological studies.
Clinical and illegal neglect. This disease kills people.
Why don't we get the same respect as AIDS in funding and listening to our experts?
Listen to many patients, we are different.
Lisa Petrison testimony HERE.
You can also try a Google Site Search
Separate names with a comma.