[Update: Please email Dr. Lee with copies to Sebelius, Koh and Jones requesting that the meeting be rescheduled as a two full-day, in-person meeting:
Nancy.Lee@hhs.gov
Kathleen.Sebelius@hhs.gov
howard.koh@hhs.gov
Wanda.Jones@hhs.gov]
Even the weather gods don’t agree with HHS’s cowardly decision to hold its next CFSAC meeting as basically a teleconference over only two half days, instead of the regular two full days. I say “teleconference” because no live video of the committee members will be streamed and even video testimony of the public that is allowed for the first time will only be streamed as audio during the meeting. The latter is so much beyond bizarre that I at first didn’t believe it when I heard it. Which reasonable person in their right mind would assume that the video portion of video testimony (!) will be excluded? The reason given: The webinar platform is not compatible with playing videos. Why in the world was this webinar platform chosen then? And yes, I did submit video testimony (for a number of strategic reasons).
Moreoever, no other HHS advisory committee seems to have switched to the “webinar” format. They all still seem to be holding regular in-person meetings. It’s only the lazies and crazies, ME patients, who don’t deserve even that little anymore. The reasons cited are, of course, financial, which is crazy-makingly disingenuous because HHS just blew $1 million dollars on its contract with the IOM that nobody wants. It’s official: We’ve stepped through the HHS looking glass!
So, the listserv message we received this morning from Dr. Nancy Lee, Federal Designated Officer of CFSAC, let us know that today’s part of the meeting is canceled due to a snowstorm in the DC area. Apparently, all federal offices are closed today. Fair enough. But the following isn’t. According to Dr. Lee, the meeting is on for tomorrow, weather permitting, and will be condensed into one day. All the patients’ testimony scheduled for today is canceled. Not only were there many patients who would have loved to give public comments, but were rejected because—news flash—that’s what happens when you slash the meeting time by more than a third compared to prior meetings! You don’t have enough time for public comments. But on top of it, now the patients who were “chosen” for Tuesday comments, got completely disenfranchised just like that. Not by the weather, but by the government.
Here is another kicker: Even tomorrow’s public comments are cut from 5 minutes to 3 minutes. Do you know how much you can say in 3 minutes? Try it. Nothing at all. If you were to type out your comments and to read them fast, it’s less than a page. If you were to try to give the comments in an impactful, i.e., not rattled-off, manner, we are talking a couple of paragraphs. Not to mention that the pre-submitted videos are 5 minutes long. So, presumably they will be cut altogether as well. This is not a public meeting anymore. This is a disgraceful farce!
One more thought about cutting tomorrow’s testimony to 3 minutes. HHS obviously has zero understanding of the cognitive limitations of many patients. Drafting public comments is extremely challenging for most patients due to the disease. Patients are now expected to consolidate— overnight—comments that have taken them days to draft. This is the opposite of accommodating a disability. It’s making it impossible for sick patients to participate in the meeting. It’s discriminating against the disabled. By HHS, through our own federal advisory committee!
Condensing the meeting down even further than what was already planned is completely unacceptable. In the past (until May of this year), we had two 9 to 5 meetings, a total of 16 hours. If CFSAC indeed proceeds with condensing it into just tomorrow, that would be 5 hours only, less than one third of the normal duration of the meeting? This is completely unacceptable. It’s outrageous. Clearly, Dr. Lee has to reschedule the entire meeting if HHS doesn’t want to be even more blatant about the fact that it is literally impossible for the government to care any less about this patient population, which is already so painfully obvious. I know the government is trying to burry us with the IOM “study,” but let’s attempt to rescue an iota of pretense, shall we?!
And don’t even give me the the-weather-is-out-of-our-control excuse. HHS has already rescheduled the meeting once. Don’t hide behind the weather this time when it’s much more appropriate to reschedule than it was last time. The reason given for the last rescheduling was the government shutdown. Mind you, the November meeting was scheduled for about four weeks after the end of the government shutdown. Plenty of time to proceed with the meeting as planned. Postponing then was a lot less justified than it would be here.
If you think about it, CFSAC has been given a second chance here. The big elephant in the room is that the Designated Federal Officer chose to hold this meeting as a teleconference at the, by far, most critical time in this patient population’s history: the IOM “study” proceeding despite overwhelming protest by experts and patients alike, despite an unprecedented unity among experts and patients. If HHS wants to avoid appearing as egregiously disenfranchising patients more and more at mind-blowing, accelerating speed, it has no choice than to reschedule the entire meeting and to return to its prior format: a two-day in-person meeting. If it does not do so, well then it might as well just abandon CFSAC altogether. At least then we don’t have to listen to the unspoken insincerity of “We care about you. Can’t you see? We even established a federal committee for you!” anymore. A federal committee yes, but one that does not seem to be permitted to do its job in defending its recommendations made in the interest of patients to the Secretary of Health and Human Services when those recommendations get hijacked and completely twisted, like the definition recommendation to Sebelius of October 2012.
Does anybody remember the quote from Erich Mielke, head of the infamous Stasi, the East German secret service? Mielke, when confronted about the Stasi’s abuse of, and spying on, citizens after the wall came down, stuttered, “I love … But I love everybody … all people. But I love … I am here for you.” Nobody believed Mielke and nobody believes HHS anymore at this point. The difference: People laughed about Mielke. Silly old man who’d lost it and who finally couldn’t hurt anybody anymore. Nobody affected by ME is laughing here, although the government may hardly be able to believe its luck with the timing of this snowstorm. How much more are they going to escalate their hostility towards us? How much more are we letting HHS going to get away with?
Thoughts About M.E. 
Thank you for reminding us of and articulating these important incredulous NON-sensical ONgoing CHRONIC changes made to the CFSAC meetings, Jeannette. This is but one more piece in the arsenol set in motion AGAINST the ME/CFS community! I take your analogy in East Germany very seriously!!
Who is writing this nightmare script about the political HORRORS EN’GULF’ING p/w ME/CFS ??
How much clearer can this picture be ?? WE, the ME/CFS people/human/patient community are being treated INHUMANELY with blatant DISREGARD, DISRESPECT and DISMISSAL–here’s more proof–and WORSE YET–there is an ultimate goal/target to SYSTEMATICALLY LOCK the door and THROW AWAY THE KEY on us!!! This is the POLITICAL BEHAVIOUR PATTERN . . . ARE WE GETTTING IT . . . ??
Rather than the COURTESY of rescheduling the meetings and allowing for FULL representation in ALL ways by the ME/CFS community–the CFSAC is using the inclement weather as yet another vehicle and ‘convenient’ opportunity to SLASH IMPORTANT testimony regarding ME/CFS. This is ABSOLUTELY ABSURD!! THERE IS A CLEAR ‘CONTAGIOUS’ AGENDA — AND IT IS NOT about HELPING us!!!
Unfortunately, because of this debilitating biological disease of ME/CFS–and the life restrictions imposed upon us by ME/CFS–the CHRONIC MANIPULATIONS in the movement against people/patients with ME/CFS is running RAMPANT–along with the DISEASE of ME/CFS. This is ABUSE of MILLIONS of people WORLD-WIDE with SERIOUS DEBILITATING DISEASE AND PHYSICAL DISABILITY!!
STAND UP, people! We are being PLAYED AS FOOLS at the hands of EGOS and POLITICS–THE GREATER TRAGEDY WILL BE IF WE A L L O W ourselves to be the fools . . . The door is closing in on us and that key is poised to lock the door.
AT the VERY least the CFSAC meeting needs to be rescheduled with a FULL TWO-DAY in person format–that is what would be MEANINGFUL vs. completely MEANING-LESS.
Please help out to get this meeting re-scheduled as an in-person event, lasting a full two days, with video streaming, by writing to Dr. Nancy Lee today.
Here is her email address:
Nancy.Lee@hhs.gov
Some additional people to be cc’d are:
Kathleen.Sebelius@hhs.gov
howard.koh@hhs.gov
Wanda.Jones@hhs.gov
Thanks to all for your help.
Agreed, cutting our meeting down to one partial day is not acceptable. Reschedule the full two day public meeting!!!
DONE!! Thanks for that info, Lisa!
My email to Dr. Lee (copying Sebelius, Koh and Jones):
Dear Dr. Lee,
In light of the cancellation of today’s half-day CFSAC meeting and the already truncated nature of the meeting, it is imperative that the meeting scheduled for tomorrow be cancelled and rescheduled. Given the important issues to be discussed, it is untenable to cut off those patients who were scheduled to speak today and to shorten the time of tomorrow’s speakers to 3 minutes. It draws into question whether this truncated meeting even qualifies as a public meeting given that some of the public approved to speak was excluded. It is also not accommodating disabled people because it is forcing them to revise their public comments overnight, which at least some of them won’t be able to accomplish given their disability.
I strongly urge you to schedule a regular in person two day meeting in January. There are extremely important issues to be dealt with and there is no excuse for the webinar format. Other advisory committees are having regular meetings and there is no reason why CFSAC should not.
I applaud you for allowing video testimony to include the sickest of us and encourage you to allow that for the rescheduled, in-person meeting. I also encourage you to allow for more overall time for public comments at that meeting.
Sincerely,
Jeannette Burmeister
Well done, Jeannette!!
HHS.GOV Department of Human Services CFS Charter, states that The Committee will meet not less than two times a year, that the meetings will be open to the public.
I guess they forgot they have rules to follow too.
i looked at that. the open-to-the-public requirement is seriously in question here.
Sent my email in. Thank you, Jeannette!
Do ppl realize that we still haven’t heard from HHS about he meeting tomorrow. It’s past the close of business even in Hawaii at this point. The CAA let us know on their FB page that the meeting is happening and what the revised agenda is and that the gov’t is looking into a make-up meeting in January. Why are we not getting this information directly from the gov’t? I guess the CAA is not even trying anymore to appear to be separate from the gov’t.
the ppl who have speaking slot tomorrow haven’t even been contacted to let them know that their time is cut to 3 minutes. i guess they will just be cut off if they didn’t hear before their testimony.
if anybody has any energy left after this crazy day, here are some tweets:
HHS disseminating official gov’t info through CAA. No msg from HHS re revised #CFSAC agenda/make-up meeting @ COB http://tinyurl.com/m7onhov
@Sebelius HHS giving official gov’t info through CAA. No msg from HHS re revised #CFSAC agenda/make-up meeting @ COB http://tinyurl.com/m7onhov
@HHS_DrKoh HHS giving official gov’t info through CAA. No msg from HHS re revised #CFSAC agenda/make-up meeting @ COB http://tinyurl.com/m7onhov
@BarackObama HHS giving ofcl gov’t info through CAA. No msg from HHS re revised #CFSAC agenda/make-up meeting @ COB http://tinyurl.com/m7onhov
wow, the CAA deleted their FB post that included tomorrow’s agenda and a statement that HHS is considering a make-up meeting in January. so, the link in the tweets above is not working anymore. problem with that kind of approach is screen shots. they ruin this tactic every time 😉
I haven’t received any information this morning, no email. Are they closing? Doing the meeting? Who knows…
Not being a US citizen the only word that came to my mind was: “farce”.
This is a total farce. Apparantly even in contradiction with their own guidelines.
Perhaps all writers shoud include President Obama in their “cc”?
Wasn’t he the one who promised Bob Miller’s wife to have the HHS look into “CFS”? Publicly?
I’m sure this was not what he had in mind and I’m pretty sure too that he doesn’t know about all of this. But is would put some pressure on Sebelius, seeing she only has to account for her actions to the White House (I suppose?).
I CFSAC (Nancy Lee) doesn’t go back to the original format, then perhaps patients should consider a boycot. Why take part in something that gives you no chance to speak? 5 minutes was short, but 3 minutes is ridiculous. And no video, only audio?! What’s that all about?
The connection CAA, HHS, CFSAC and then the stronly opposed IOM contract cannot be denied.
Looks like its open, cutting our already shortened meeting to a total of 5 hours, so I won’t get to speak at all. WOW.
Less than two hours before the meeting, still no update from HHS. Still no notification of today’s speakers re the cut time.
The disrespect, disregard, for the MECFS community is unbelievable. Im up for boycotting the meeting, but they won’t care, thats clear, in fact its probably what they want.
This is OUTRAGEOUS to have this CFSAC meeting SLASHED so as to be a ‘token’ show that a meeting was held–certainly a BLATANTLY DISMISSIVE meeting for the ME/CFS patient/people community. As elsvh has said above–PRESIDENT OBAMA most certainly is NOT aware of all of the POLITICS and cover-ups ‘decades long- NOR would he condone this!!!
Can we also somehow BLOW the WHISTLE on all of this to the WORLD HEALTH ORGANIZATION ??? This has gotten MONSTROUSLY BIGGER THAN THE WHITE HOUSE OF THE U.S.A. !!!
patients are more upset than i have EVER seen them. this is not just disrespect. this is ABUSE.
ppl are really sick and they’ve had an extraordinary amount of stress yesterday. maybe the plan of HHS is to get us all too sick to have any involvement at all anymore. how these folks sleep at night is beyond me.
My email to Dr. Lee sent around 11 am EST:
Dear Dr. Lee,
Thank you for sending the updated agenda for today’s CFSAC meeting 1.5 hour before the start of the meeting. I take that to mean that the meeting will take place although the email did not expressly say so.
Is there any plan to contact today’s speakers by phone to let them know that their comment time was cut to 3 minutes? As far as I know, this has not happened yet. The comments are scheduled to be given in less than 2.5 hours. Not everybody checks their emails frequently. Seamon Corporation has in the past contacted speakers about their public comments. Why is this not happening here when it’s clearly crucial that speakers are aware that they only have 3 minutes instead of the promised 5 minutes? Will you just cut speakers off at 3 minutes?
Also, what will happen to the 5-minute “video” comments? Are they just not going to be “shown” at all or will they be cut off at 3 minutes? For the record, I object to having my video cut off at 3 minutes. I also object to the fact that only the audio portion of videos will be shown, if at all. Had I known that the video part of my “video comments” will be excluded, I would have opted for phone comments. This was not made clear in the instruction for the meeting and I am sure you would agree that it’s not at all reasonable to suspect that.
I hereby renew my request to cancel today’s meeting and schedule a proper in-person, two-day meeting in January. It appears that the sequester may be over, so the excuse for the webinar format is not in place anymore. Let alone that no other federal advisory committee seems to have changed their format. ME patients clearly receive special treatment, not the good kind.
Again, for the record, the patient community has never been this upset. The disrespect that HHS has demonstrated with regard to the handling of this meeting is unprecedented and absolutely astounding. The questions regarding the meeting qualifying as a public meeting and regarding accommodating disabled people remain unanswered.
Sincerely,
Jeannette Burmeister
Well said. This is what happens when a Government gets too big, they bully the people that pays their check. The members get paid $200.00 a day for these meetings, you know they are getting the same amount even though they are only doing half day. This Committee is eleven years of waste.
Thank you for sending the e-mail letter to Dr. Lee, Jeannette, and speaking to the INEQUITIES of ‘said’ farcical meeting.
How could this Committee do this to us? We have got to find a way to organize after this.
Last straw? May very well be.
Jeannette, this is going to be a little long, I was scheduled to speak on Tue. So obviously I was deleted. It looks like they are going forth with the IOM contract, and I think there is a way to shift the outcome of that definition, which means our focus has to change. Im going to read part of what was going to be my comentary on TUE.
How could the CFSAC allow the CPET test, or STRESS test be denied, the results that the Stevens protocol put forth is unddeniable. This test shows severe metabolic failure on the second day, not only is this a diagnostic tool, but proof of profound life threatening illness. The CDC toolkit recommends GRADED EXERCISE THEARAPY OR GET on the website as treatment, this treatment should only be recommended as treatment after the results of a two day stress test has shown that the patient is not in metabolic failure, and that GET would not be harmful as treatment to the patient. The 2 day stress test should be a nonnegocible test to the CDC as well. I would ask all of the MECFS community to stand up and demand the 2 day stress test be done, and that if the CDC continues to have GET as treatment while omitting the 2 day stress test I would call on the CFSAC committee to start an investigation, and possibly question whether gross negligence, incompetence, or medical malpractice is in play here. Patients are being harmed. I would ask, that the CDC website reflect these changes immediately, so no more harm comes to the MECFS patients, and the physicians going to the CDC website can get correct information on safe treatment. This is one of the first diagnostic tools, and marker for the MECFS patients, we cannot, and should not accept this OMISSION. The IOM definition will work itself out if we demand the 2 day stress test, because otherwise they will look unprofessional, unqualified, and negligent. Thank you.
Jeannette, the definition of medical malpractice (As I’m sureyou know). Is an Act or Omission that causes harm or injury to a patient. I think the CDC omittion of the stress test while leaving GET on their website is gross negligence at the very least. If we demand the two day stress test, how is IOM going to look if they put GET, as treatment, and furthermore, it could force their hand from going in the wrong direction.
Thanks for your comment. I am sorry your testimony got cut.It’s unacceptable!
I apologize, but I am very sick today, so I can only post a short reply.
I disagree that our focus has to shift. the IOM “study” is an 18-months process and we are at the very beginning. It’s like having the first batter up in the first inning. So many things can happen that would stop the IOM “study.” There is no way that there is anything good coming out of it. So, I will continue to focus my efforts on stopping the “study” every step of the way, despite Dr. Lee’s thinly veiled threat yesterday. And I urge everybody else to do the same. Cooperating is capitulating.
The the-contract-is-a-done-deal talking point is meant to discourage us and force us into submission. Don’t fall for it. Don’t legitimize the process by engaging. We would be digging out own grave.
Gotta sign off now.
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.
Dr. Nancy Lee statements or diatribe expressing her displeasure and attacking patient advocates on their criticism of the IoM and making threats against these advocates is outrageous, chilling and inexcusable.
An immediate White House petition should be initiated to replace Dr. Nancy Lee. 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 constitutionally protected free speech right! Apparently from her outburst, many within HHS are constitutionally illiterate.
I would seek and 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 a way for public venting without any real meaningful action taken by CFSAC.
It should be disbanded.
As I did not actually hear Dr. Nancy Lee in action at the CFSAC meetings today–I found it most interesting to read the report above on Dr. Lee’s appalling and UNprofessional behaviour in verbal attacks against patient advocates at a ‘meeting’ FOR advocates to speak up and express our concerns.
This sounds like more of the same that has been reported in Dr. Lee’s threatening and/or intimidation of two (or three) other individuals at a previous meeting, which was reported and ‘investigated’ and, subsequently, dismissed by Dr. Koh. Clearly, the fact that we ARE speaking out is NOT to Dr. Lee’s approval. True–WHAT is Dr. Nancy Lee doing in that position? Then again–it is all part of the farce.
CFSAC has no power to do anything . . . says Dr. Nancy Lee. ANOTHER waste of time of OUR efforts and ‘smoke and mirrors’ as per Ecoclimber. YET, conversely, CFSAC IS taking systematic steps at STANDING in the way to cripple patient advocacy.
More LIES, cover-ups and stone-walling!
As well as including a copy of the constitution–a copy of the audio recording of Dr. Nancy Lee’s rebuking statements addressed to the ME/CFS advocates @ this meeting would also be appropriate to evidence.
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