It’s time for another round of “How Stupid Is This?”
That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post in a game show host voice.
The Contestant of Stupidity this time is . . . ok, imagine a drum roll here . . . The Contestant of Stupidity is . . . the CFS Advisory Committee!
*shakes pompoms*
*throws confetti*
*gets dizzy and has to sit down suddenly*
What did the CFSAC do this time that is Incredibly Stupid? You’re going to love this. And by love, I actually mean hate.
On Monday, November 27th, the public notice of the upcoming CFSAC meeting will be published in the Federal Register. The deadline to sign up for public comment at this meeting is . . .
. . . wait for it . . .
If you guessed close of business on Monday, November 27th, YOU ARE RIGHT!
YES! The meeting notice telling people how to sign up for public comment is being published ON THE SAME DAY as the deadline to sign up for public comment!
*turns to all of you* Well, audience? *all of you respond in unison* How Stupid Is This?
I cannot recall this happening before. I mean, we’ve had some short deadlines. And every time, advocates politely write in to the Office of Women’s Health to remind them that this is a very sick population, most of whom simply cannot turn on a dime and write testimony in ten days or sign up within three days or whatever. So don’t think that maybe the Office of Women’s Health doesn’t know that this deadline guarantees that many people with ME will miss the deadline, and therefore miss the opportunity to offer public comment at the meeting. They know.
You know what else is stupid? The meeting notice does not give a deadline for submitting written comment. Do you think that means the testimony is due on Monday the 27th? or maybe a few days before the meeting? or the day of the meeting? Your guess is as good as mine.
While we’re at it, check out this other stupid thing. According to the Charter, the committee is supposed to have thirteen members. So how many do you think are listed on the roster as of today?
FOUR. Four members.
That’s pretty awesome, yeah? These vacancies didn’t sneak up on anyone. I warned this would happen back in June 2017 and December 2016. I’ve heard new appointments are imminent, but there’s no way that they will swear in nine new members at the December meeting.
So if you would like to give public comment in person or by phone on December 13th or 14th, don’t wait for Monday!
Email your name and phone number to cfsac@hhs.gov TODAY! See the meeting notice for more instructions.
I think we can all agree, this was Incredibly Stupid. But congratulations CFSAC for being today’s Contestant of Stupidity! Let’s give them a round of applause, shall we?
UPDATE November 27, 2017: CFSAC sent out the following notice this morning: “Due to a delay of a few days in publishing the FRN, we will be taking public comments through next Monday, December 4th.”
Thanks for always being on top of things Jennie!
Between the current roster (note all of those terms expire by 1 July 2018), the lack of detail in the Fed Reg notice, and so on, I think CFSAC is a shoe-in for “Stupid of the Year” award.
Thanks Jennie. The work you’re doing is invaluable. I am so grateful you’re out there for us all!
It may be worth looking at the law relating to disability & policies relating to accessibility & inclusion. Usually there is a requirement for ‘reasonable accommodations’ to ensure access to processes as well as physical access.
Whilst this may vary country to country, I would imaging the principle is there & is written in some legislation of policy.
May be it needs us physically & cognitively limited folk to organise these well paid employees & remind them of their obligations to ensure sound & fair process!!
There was a song I heard with a refrain: ‘When will they ever learn?’
Here is what The Law says:
Section 504 of the Rehabilitation Act of 1973:
“No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”
The plain language of the law is clear. We are certainly disabled and excluded. Whether there are actually any benefits to participating in the toothless CFSAC is a separate question.
Trouble is, laws don’t enforce themselves, and government prosecutors aren’t interested. Agency Inspectors General are supposed to be interested in this stuff, but don’t hold your breath.
If there are only four CFSAC members, and their terms all expire soon, is it reasonable to conclude HHS intends to let the committee die?
In keeping with your “tongue in cheek” blog here, I’d like once again to propose billboards as PSA’s as they’re quite affordable. I’d suggest that it say: “Extreme Fatigue? Ask your doctor about CFS/ME”. Of course, the doctor won’t know squat but that’s the whole point…. Marcie
Shaking my head…
This is PROOF POSITIVE they don’t want us to get better or figure this out..
So angry.
With them not having filled 9/13 positions, my guess is they plan to announce that they are disbanding CFSAC. As toothless as it has been, at least it has been a written record of needs. All relevant departments are there so can’t say they didn’t know of the disease severity, prevalence or needs. And it is direct access to the Secretary. I think we’d be even more up the creek without a paddle without it.
No surprise. The HHS Asst. Secretary’s office has no respect for the ME/CFS CFSAC or our patients and advocates. We had one recent Designated Federal Officer (DFO) who only wanted OUT, and she finally got out. Then two others with essentially no knowledge of the disease. Now we have another person giving every indication he knew nothing about ME/CFS before being appointed and who could care less about this population or the proper and efficient management of CFSAC and the semi-annual meetings. He seems to have been selected from as obscure an HHS location as possible – because he didn’t have much to do? His excuse for the lack of appointments for those four outstanding CFSAC voting-member seats is that the Asst. Secretary’s office has not reviewed and approved the applications that have been sent in as long ago as spring of 2016.
A seriously involved DFO, with initiative and sincere interest in meeting the needs of the patients and the requirements of the CFSAC charter (emphasis on having initiative) would have pushed the Asst. Secretary’s office to review and approve four applicants for these seats. And pushed, and pushed, till it got done. After all, there is nothing controversial about making such appointments.
Last year I wrote – “I quit” regarding anything CFSAC related. But until most of us quit giving the HHS the cover that CFSAC is our opportunity to air our concerns and have them passed on to the various departments within HHS (where they, as recommendations from CFSAC, get dropped into the HHS Great Black Hole), we will be having these same discussions in 10 years.
Some will say, “But this IS our only official route in to the HHS, and we should have a seat at the table.” In my opinion, it is simply another route to being totally ignored by the departments that attend these meetings through ex-officios and by the Asst. Secretary. This table isn’t worth the space it takes up. Our energies can be more effectively used elsewhere as is proven by all the recent successes in state legislatures, health departments, and of course, Jen Brea’s “Unrest” and the incredible response to it.
(Once again, as I said last year, those who serve as voting and non-voting members work very hard for all the right reasons. I in no way am speaking against them. )
Jennie, you surpass yourself! You are simply,….. wait for it…..drumroll….
AWESOME!
Janet
Not stupid…all this is just information about how determined the CDC is to continue to ignore and neglect ME/CFS. All that rhetoric by Collins & Co was nothing more than white noise; the research program is nothing but a long drawn-out diversionary tactic by the people who invited Shorter to speak..nothing has changed.
I think we need to turn our backs on them instead of using precious energy and funding trying to get blood out of a stone. Clearly, we are on our own. Researchers can get funding in relevant tooics by calling it something else, though, it seems. And we can raise our own money.
I agree with your assessment that we are being handled, that the Policy of No ME Research has not changed. CFSAC will never lead to substantive change but it does provide an official record of the governement’s inadequate response. That official record could be useful in future publicity campaigns or even (dare I say it?) litigation.
Is having an official record of deliberate indifference worth the effort required? I don’t know. The tobacco industry was finally brought to heel by the courts. As awful as it is to contemplate, protracted painful expensive litigation seems to be the only route open to us. Ugggh. I have personal experience of being chewed on by the legal machine. Only the lawyers emerged unscathed (sorry, Ms Spotila).
Yes….it seems potentially useful to have an official record of the lies, false promises and failures to act. And you may be right that legal action is a way forward..you are definitely right that that would take a terrible toll on activists.
I understand that Alem Matthees who valiantly pursued the FOIA path to getting the PACE Researchers to come clean about data that undermined their assertions that the research supported CBT and GET as ‘safe and effective’ treatments for ME/CFS is paying a price in deterioration of his health from the effort involved.
Jeannette Burmeister who used her legal talents to get the CDC exposed, has certainly paid a price in her health for those efforts. She has also suffered a very abusive response from James Coyne…abusive and misogynist. And been unsupported by a contingent of ME/CFS advocates.
Not only the illness, but some advocates, punish the virtuous.
Here in the UK, I realised that no one cares about the suffering of patients (we’re just a lot of neurotic middle-class women who have nothing better to do than complain of minor, everyday symptoms) but people do care about money. There is a kind of underlying assumption that bullying people back to work (GET) saves money….if we could show that it doesn’t…that treating people who have ME/CFS in line with their need to minimise exertion can facilitate their keeping jobs, continuing their education, is what would really save money….that might be more effective. Jane Colby, of the UK Tymes Trust, has already shown that children with ME/CFS who are provded with home tutoring instead of being required to attend school do well on their national exams.
This is my contribution, which will make more sense to people in the UK:
http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health
The US has advocates who are skilled at getting statistical information…maybe a similar effort should be made there, to compare the potential economic benefits of providing care in line with the IOM assertion about ME/CFS, that the defining characteristic of this disease is that ‘exertion of any kind – physical, cognitive or emotional – may adversely affect many organ systems… ‘.
This leads straight back to the recommendations of Ramsay and Acheson, that complete rest from the inception gives the best prognosis, and that future prognosis is directly connected to the patient’s ability to get the needed rest.
http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/
That’s my take, too. Make a record for someday when there’s a GOA investigation, or private litigation, or whatever. They can’t say they didn’t know, or we failed to engage (so engagement wasn’t needed after all), or whatever excuse.
Also – it looks like there will be no recording of the meeting at all. Beside the meeting listing, with no info attached, it says (in person). Am writing a letter I’ll share in a bit.
Here’s my letter. Not very elegant, but the best I can do right now.
To: francis.collins@nih.gov; (office of communications) howard.holland@ahrq.hhs.gov; (Director of ARQH) gopal.khanna@ahrq.hhs.gov; vicky.whittemore@nih.gov; cfsac@hhs.gov
Subject: What’s going on with Dec 13, 14 2017 CFSAC?
Hi there. What is going on? CFSAC is usually a webinar, which is posted online afterwards as well so the ME CFS community can have access. We get at least 2 weeks notice, more being better as the population is so sick.
1. The notice of the net meeting is dated Nov 27, but released ahead Nov 25 afternoon, perhaps after Jennifer Spotila’s occupyME.net blog about the problems with the notice.
a) It says that Monday Nov 27 is also the final day for oral submissions! A few hours maximum to no notice (as many are too disabled to read mail daily) for a severely disabled population to sign up to participate????
b) The notice of the meeting does not include a date for written submissions.
https://www.federalregister.gov/documents/2017/11/27/2017-25550/meeting-of-the-chronic-fatigue-syndrome-advisory-committee
2. There seem to be only 4/13 voting positions filled on the roster. Why are the other spots not filled? I believe by mandate they have to be filled.
https://www.hhs.gov/ash/advisory-committees/cfsac/about-cfsac/roster/index.html
3. The description of the meeting online says nothing. No agenda. No links to submission formats and dates. No links to #1. Nothing. So someone coming to get info about the meeting who didn’t receive # would have no access.
https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-12-13/index.html
4. On the Meetings page, only, it says ‘in person’. Do you mean that you are not providing access to this meeting? We need the webinar participation info please. And it needs to be recorded and posted online afterwards for those too sick to listen realtime.
https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/index.html
I look forward to a timely remedying of these issues and a response.
Sincerely,
I was sure 4 wasn’t enough but I didn’t know how many there should be. Thanks for the post.
Also, is there a reason the orgs don’t vote?
Yes. The charter added them as non-voting organization liaisons. Organizations cannot vote on federal advisory committees. Only individuals can be voting members.
That probably makes sense. Thank you.
CFSAC just sent this out:
Good morning, below is the link to the Federal Register Notice (FRN) announcing the upcoming in person CFSAC meeting.
Due to a delay of a few days in publishing the FRN, we will be taking public comments through next Monday, December 4th.
A final agenda will be posted on the CFSAC website this week.
We look forward to your public comments.
Thank you.
https://www.gpo.gov/fdsys/pkg/FR-2017-11-27/pdf/2017-25549.pdf
I am still unclear if taking public comment til 4 Dec means they are accepting requests for public comment time slots or accepting written comment until 4 Dec.
Thanks, Denise.
Ya think that maybe Jennie’s post and following comments might have spurred this? Thank you, Jennie!!!
Another update from CFSAC:
Participating in person at the upcoming CFSAC meeting
We will be holding an in person meeting December 13-14, at the U.S. Department of Health & Human Services headquarters. We are located at:
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
If you would like to participate in person, please let us know and we will add your name to a list of individuals attending in person. You will need to show a state or Federal government issued I.D. with your photograph in order to enter the building and be escorted to the meeting room.
If you would like to participate in person but you are not a U.S. citizen, please email the CFSAC mailbox. You will have to be properly vetted prior to entering the building. We’ll need specific information from you before or on December 5th at the latest.
[Still no word on whether the meeting is being livestreamed or who the current CFSAC chair is]
(Another update from CFSAC)
“The meeting will be streamed live via the HHS channel. It will also be recorded in order to the public to watch it at a later date.”
I just checked the CFSAC website. No information beyond dates. But they did have a survey. I recommend everyone go to that site and tell the CFSAC “management” (not much management being done) just what you think about their announcements. No names needed.
Denise – How did you get that update about the meeting being recorded? from CFSAC? I’m on the LIST SERVE and didn’t get it.
I emailed CFSAC, and though I asked them to tell the community, they replied to me in a personal email. Please help spread the word about the livestream and recording Leela.
Thanks Denise. Will do. So inept that the DFO replied to you personally rather than sending the info out to the community. The DFO never replied to my email. Maybe he didn’t like my sending a cc to his boss and Vikki. (I felt I had to do that given all the problems with the meeting notice and the short timeline)
I hope your work gets widely shared. This is both outrageous – and typical.
These bureaucrats should all hang their heads in shame — medical professionals indeed!
This is like a Three Stooges routine of “Who’s on First?” only it’s about people’s lives.
I’m too aggravated to do anything right now, but appreciate everyone’s comments, work and letters.
Meanwhile, Jane Brody wrote a good column in the New York Times Science section on Nov. 28 about ME/CFS. If she takes it seriously and writes about this disease like this, validating how sick its sufferers are, then some type of a sea change is happening. She is pretty conservative in writing about health news — no innovations. So, something is changing.
The agenda has been posted
https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-12-13/index.html
Livestream: http://www.hhs.gov/live
Call in number: (888) 469-1760
Participant passcode: 4510479
So this is for Dec. 13? Does anyone know the time?
Also, to call in, does one have to pre-register? Or to view the livestream?
Am in brain fog today due to barely any sleep.
For 13 Dec the meeting is 9 -3:30
14 Dec the meeting is 9-5
The CFSAC website gives no indication that pre-registration is necessary for calling in/viewing livestream.
Livestream: http://www.hhs.gov/live
Call in number: (888) 469-1760
Participant passcode: 4510479
Reminder – requests for public comment time slots are due 4 Dec 2017 and should be sent to cfsac@hhs.gov
Thanks.
I have no reason to comment as others will say what I would.
Those planning to attend CFSAC in person must register in advance by sending their name(s) to cfsac@hhs.gov .
(Apologies for having to post little bits of info at a time but the necessary meeting info was not all available at once.)
Thanks for the reminder. I did send in a comment, having just experienced the 32nd year of having this disease.
I hope the cause and treatment are discovered soon so I can have some of a life in the years left.
Now to remember to watch the livestream and not have apoplexy at what I’m seeing.
We need more than a black box warning. We need a complete recall, but I do appreciate Terri for being the ONLY one who spoke up. So much more needed to be said about this and so many other things. As a severe bedridden ME sufferer; sick since 1983, and as a U.S. citizen, I find these meetings traumatizing and mind numbing.
The comment, “lucky you”, to Terri when she said she was going to lie down was another extreme low point in the meeting and no one said anything, unless they said it after the recording ended.
I didn’t watch it. Someone said “lucky you” to someone with ME/CFS who was wiped out? Who was that? I hope not a medical professional. That is nasty stuff.
There was a slide put forth during the Research Update on Pediatric ME/CFS presentation titled, Support/coping skills, which in part cited:
Include social & emotional needs (E. Crawley)
Lighting Process – (E. Crawley) – outlandish claims – does not “cure”
The presenter was citing EC positively in the first reference and negatively in the second. Terri spoke up; and was the only one to speak up, about EC being very hostile to the patient community.
The “lucky you” comment came from the Designated Federal Officer for CFSAC, Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health, at the end of one of the meetings.
Sorry you couldn’t watch or listen to it Kathy. Thank you for sending in your comments.