Discussion in 'Upcoming ME/CFS Events' started by Nielk, Dec 11, 2013.
Measured and effective statements, @jspotila.
It got through -- great job, @Andrew!
Susan Kreutzer testimony -
Yes. Andrew ir was very clear and powerful. Thank you. Can you post your testimony here?
Thank you so much! I felt not at all measured, but hope it was effective.
ETA: they called me THREE times before being able to conference me in. What a mess.
I remain very willing to post public comment for those denied speaking yesterday or those whose comments were truncated today. Feel free to email me at firstname.lastname@example.org to arrange.
What you said was perfect. I was so disappointed that there wasn't any sound. I only have a Cell phone and i'm not sitting on my cell for 5 hours. This whole thing is a mess.
Edward Bermeister's testimony.
If enough patients are concerned then we should discuss a petition to the HHS to have her removed from CFSAC.
Jennie Spotila's testimony.
To me, it was a total farce. The ME/CFS patient community should be outrage!! It's reminded me of the rollout of the Affordable Care Act's website with all the technical glitches. There is no excuse from the contractor's side for allowing this to occur. The ineptitude of HHS is startling.
I have to hear the audio but I believe she made that statement in displeasure concerning advocates criticism of the IoM. Along with the petition, I would include a copy of the U.S. Constitution along with the U.S. Bill of Rights specifically the First Amendment. Last I heard, I believe criticism of the IoM is a Constitutional protected free speech right! I would demand an immediate apology to the ME/CFS patient community who are merely during their due diligence in the HHS obfuscation of the IoM contract. If she can't take the heat, then get out of the kitchen!
I also believe that she or someone else stated that the CFSAC has no power to do anything? If that is the case and just as I thought, it is just a mere bureaucratic technique of creating a public forum of smoke and mirrors as way for public venting without any real action being taken by the agency.
It should be disbanded.
If anyone has the audio, Dr. Nancy Lee diatribe of berating and threatening ME/CFS patient advocates should be posted on every social media website!
Is there one thread where we are all posting our testimonies?
I want to add a couple thoughts here. The IOM has a very impressive sounding process that someone in government can point to and make it look like the project is in the best possible hands. For example, that description of the review committee that keeps them on focus, makes sure it is evidence based, etc. The truth is that panel has no power to correct problems. All they can do is make suggestions, and the panel doesn't have to follow any of them. So, for example, if the panel says "but what those websites you refer to don't provide any evidence to back up their claims," the panel can just decide to use it anyway based on the prestige of the institute that puts up the website. And as we have seen with the CDC, selective omission of information and mixing opinion with fact is not something that automatically bothers the consciences of people at these prestigious centers. But getting back to the IOM, in the CFS section of the Gulf War Treatment guide, they reference web pages that offer no citations to back up their claims. So either the review board ignored this part, or the panel refused to fix it. But either way, this is not the type of work the IOM website implies they provide.
“I just want to remind everyone that CFSAC is an advisory committee, not an oversight committee. We take the advice and put it through our public health experience.”
“I've seen so much vitriol and personal attacks in email and blogs around the IOM study. I don't see how this will be constructive going forward, given the opportunity before the ME patients and families.”
“Everyone I know working to make the clinical diagnostic criteria a reality has good intentions and wants to make things better for ME/CFS patients. Implying that IOM staff or committee members don't have good intentions will not be helpful, and it could backfire.”
(CFSAC feed, taken from screenshots and posted by Wildaisy: “Some of what she said, which I distinctly heard with my very own ears, does not appear in this transcript.... Insert Dr. Lee's comment about those 'inside voice' advocates 'reeling in' those advocates she thinks are too aggressive.”)
Dr. Lee also said, “I think later on Susan will be talking more about the NIH study. I really can't discuss that except to say that NIH is closely involved in this contract as far as managing the contract.” Earlier Jennie commented:
Did Dr. Belay mention even a one-day CPET in connection with the ongoing CDC multi-site study?
My administration is committed to creating an unprecedented level of openness in government. We will work together to ensure the public trust and establish a system of transparency, public participation, and collaboration. Openness will strengthen our democracy and promote efficiency and effectiveness in Government.
— President Barack Obama
Does the President know that his employees are running amuck under his watch? My Senator Patty Murray will hear from me on this one.
As well as still fighting the contract and trying to ensure it is done as right as possible. Perhaps we should begin to think about how we will deal with fighting against it if it comes into effect and is a backward step.
Of course we would need to see it before we know what is wrong, or if it is wrong, but if it was then we might gain an advantage by thinking about this early and getting organized and perhaps that in itself will apply pressure to the IOM/HHS as they will hear of our plans to protest if it is wrong.
From Wilddaisy's post at http://www.mecfsforums.com/index.php/topic,18333.30.html
Thank you, Eileen.
(Lack of) Progress Report
December 12th, 2013 Jennie Spotila
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