The first IOM meeting to develop diagnostic criteria for “ME/CFS” is scheduled for the 27th and 28th of this month. The afternoon of the first day is open to the public and will include a public-comment period.
So, what’s the problem with this? The statement of work requires merely one out of the five IOM committee meetings to be public. Given how HHS and the IOM have (mis-)handled matters so far and given the tremendous backlash from the expert and patient communities, I would venture a guess that this will be the only meeting that will be open to the public. And yet, here we are, less than three weeks away from the meeting, and no instructions on the registration process have been given and more importantly, no information is available on the public-comment session. But hey, this is only the most important issue for this patient population in our lifetime. So, maybe we shouldn’t be so sensitive to all the secrecy and lack of consideration. I keep raising the fact that the secrecy surrounding this “study” raises red flags left and right and the IOM (in addition to HHS) is making my point for me. But who says that acting this unreasonably and expecting severely ill people to travel at a moment’s notice without any regard for their disability is proof of bad faith? Actually, I do!
How many people will get to comment? How will the IOM determine who will get to speak if there are more people interested in speaking than available speaking slots? Something tells me that members of the public who have been the most vocal against the IOM “study” and the entire process will get to make a public comment at the meeting when hell freezes over, despite the fact that we have been as closely involved in the IOM discourse as one can be since the very beginning. I can pretty much predict at least some people who will get a public-comment slot and I am sure you can, too, without me having to spell it out.
By the way, I do not encourage commenting substantively, e.g., on potential biases of committee members, or engaging in the IOM process in any way other than to reject it unequivocally and to make that point every step of the way. The message needs to be that the community objects to the “study” altogether for the various reasons I listed in my recent blog post.
Maybe HHS and the IOM are not familiar with this (After all, the IOM just got $1 million from HHS to burn on a literature review.), but this is how air travel works: The later you book your ticket, the more expensive it will be. This kind of matters for a patient population that is rather poor, often because of wrongly denied disability claims, ironically due to inadequate government-sponsored disease definitions. Full circle.
Update: I have heard from several patients that only organizations are being invited by the IOM to send representatives to give public comments. If this is true (and it would explain the absence of a sign-up process for comments or even attendance), this really isn’t a “public” comment session. It’s a session for people to speak who HHS and the IOM seem to think want a seat at the table so badly that they’ll play ball. Although they may be in for a surprise with some of those folks. I have to say, for an organization allegedly as esteemed as the IOM, there certainly seems to be a strong desire to control the process entirely down to what is being said at the public meeting and a lot of fear of letting people give their honest opinion. And if that’s the case, we can all imagine why.
Again, this has already been going on and yet, us mortals have not heard about this officially. This information just happened to be leaked. Why is the IOM not forthcoming about the process? From an institution with supposedly impeccable reputation, one would expect more integrity than has been evident so far.
Updated Update: More information leaked and it appears that at least two individuals who have no official affiliation with any organization have been invited to speak. It’s getting more and more disturbing. It’s like elections in East Germany where the Communist Party would always win by a landslide … of 99.9%.
Thoughts About M.E. 
Right you are, as usual. For $1M you might think they would do a competent job and actually reasonably accommodate the severely disabled, who make up most of the ‘stakeholders’ for their study.
The only hope we have of CAA speaking out against this farce would be because they’re jealous that IoM has trounced them at their own game- being a parasitic non-profit leeching off and harming the very sick patients they claim to serve.
not to make excuses for the IOM b/c i think what they are doing is inexcusable on so many levels, but i am sure HHS is driving the timing. the IOM is just doing what it’s told by HHS. not a bad gig for $1 million if you can get it. this is one reason they would never come up with a “study” result that’s contrary to what HHS ordered.
i am afraid there is not a chance that the CAA will speak up for us. they have stopped fighting for us years ago. and they don’t have the luxury of envy since they are really struggling i think. if they openly oppose the hand that feeds them, the government, they’ve got nobody left who is in their corner.
however, it’s not all doom and gloom. i actually feel quite optimistic about the whole thing because we are fighting and i don’t see patients faltering. the government got more than it bargained for this time.
Excellent points. I agree, except I really think CAA could ultimately survive better by switching over to help patients. If they actually turned over a new leaf, I would support them, believe it or not. As it stands now since things have gotten to the breaking point, when we are done with these urgent issues of IoM, etc., the next task will be to destroy CAA.
However, if the new CEO is as crassly self-interested as the old, and I see no signs to the contrary, CAA will definitely continue to betray patients, because while CAA will ultimately be so battered it will no longer be viable, Head and Vernon could care less since they will have milked the coffers to the limit before CAA goes down and they know they will then be rewarded with prime jobs in the federal government for their work oppressing patients. I intend to not let them get away with this.
i must say that i just can’t conceive of the CAA being able to redeem itself after evth that’s happened. ironically, like you said, all this stuff will eventually catch with them and it will do them in. question is: will it take vernon to retirement or not? i say only if she retires very, very early.
Jeannette,
First of all thank you so much for all you are doing to keep the ME/CFS community aware of events that are transpiring around this illness. I know it is at great sacrifice to your own health and the time and energy that you have to give to your family that you are advocating both for yourself and for all of us. I’m sure glad that a fellow sister from my old “hood” has the guts and the brains to speak up in an “outside voice” to tell it like it is.
I have been in contact with IOM (by phone) as of Monday, Jan. 7th regarding the status of the agenda and registration for the public session of this meeting. The information that I was provided was that the “logistics” of the public session of the meeting are still being developed and they hope to have more information available by the end of the week.
My ability to write has been substantially impacted by the cognitive issues that I deal with from this illness, but I am in the process of writing a follow-up letter to the IOM documenting my phone conversation about the public session of this meeting, as well as making a formal complaint about this process. While I am sure that my letter will not be as eloquent or succinct as one that you could write, I wanted you to know that I have tasked myself to try to address/document this issue.
I also plan to be in Washington the week of Jan. 26th to continue my efforts to lobby Congress and publicly demonstrate about my concerns with how the U.S. government is addressing this illness. While I am just one person making my voice be heard, I believe that your strong voice (being viewed by thousands online) as well as the work of many, many other patients and advocates behind the scenes, will be a game changer in how this illness will be addressed in the future.
Thanks again for all that you are doing.
Sincerely,
Susan Kreutzer (a.k.a. Wally)
thanks, susan, for shedding some light.
“The information that I was provided was that the “logistics” of the public session of the meeting are still being developed and they hope to have more information available by the end of the week.” This is nothing short but outrageous. if this is the quality of work we can expect from the IOM, then we are sunk even if the IOM didn’t have strict marching orders from HHS on the outcome of the “study.”
here is a tip from the for-profit sector to the government and its surrogates: if you are not ready to hold a meeting, don’t schedule it yet. it’s not like there is any magic to this particular date. also, how hard is it to let people know how to register for attending and speaking? even HHS who has a horrific track record for these things for the CFSAC meetings can do it.
HERE WE GOOOOOOOO!!!! Like you say, Jeannette—Amped up. Ready to go. (WHAT a Mickey Mouse show–no offense to Mickey!!)
Patricia Carter
Ess, take it from me, someone who lives in Orlando, home of the famous mouse: Mickey and his friends do it much, much better. They are a for-profit enterprise, of course, and when they have a meeting, they do it right.
Thank you, Jeannette, for letting patients know what is happening with this secret HHS IOM meeting to further their conspiracy against M.E. patients.
I believe IOM is purposely setting up this meeting so that only those who have been co-opted into doing the bidding of HHS will be there to speak. It will be interesting to see which patients step up to declare, by speaking in favor of this IOM contract and cooperating with it, that they are traitors to the interests of their fellow patients.
I agree with Jeannette. Many patients are just now waking up to the fact that CA and PANDORA are partners with the US government in this scheme to bury M.E. and M.E. patients for another 30 years. And as they are waking up, they are horrified to see that people have been suffering and dying without relief from this life-destroying disease while their “patient” organizations and government agencies not only refuse to help patients–they make money off the misery of the patients. It is high time the patient community wakes up and fights this monster.
It is further interesting that one patient forum, Phoenix Rising, has been asked to do a presentation for this IOM meeting, while the other, mecfsforums has not. Clearly, the IOM is cherry-picking to leave out patient groups that are openly stating opposition to this IOM contract.
More than clear . . . !!!!!!! (Love Mickey 🙂 !!!)
This ‘cherry picking’ can also be seen as a ‘tactic’ to ‘divide and conquer’ — as is part of ‘their’ strategy that has been ongoing !! Let us NOT be taken for fools, as they are trying to play us for . . . Keep our eyes on the ball — and our eyes ‘WIDE OPEN’!!!!
Interesting to also note that, as well as (another) December 26, 2013 letter sent to Sebelius by advocates, doctors, experts, et al–YET AGAIN, ANOTHER letter on January 2, 2014 was sent to Sebelius, HHS by the leading ME/CFS experts restating their stance and opposition to the IoM contract to redefine ME/CFS.
The ME/CFS Experts and Researchers are ‘more than CLEAR’ in reiterating the NEED for cancellation of the IoM contract ‘on our behalves’–just as WE, in our GROWING NUMBERS must be–with NO FALTERING and NO ACQUIESCING!!!
OOPS–I might have that wrong–the December 26, 2013 letter seems to be ‘the same’ letter mentioned as the January 2, 2014 letter. In any case–the message is the same–CANCEL the IoM!!!
If they have nothing to hide, why are they being so secretive?
Thank you for posting this, Jeannette. And thank you for your advocacy, too, Susan!
Clearly, if only hand-picked individuals are allowed a voice, then this opportunity for public comment is really not a democratic process.
While you are in DC, if he will be there, you might want to try to visit Congressman Jack Kingston. He seems to be approachable and he is on your ‘cc list for the complaint.
Of course, given your workload and potential ME-load this might not be possible, but I thought I’d throw it out there.
I’ve posted this elsewhere, but I’m including it here as food for thought:
If this contract runs to completion, there is one possible outcome that could provide the truth about ME and at the same time, exonerate the IOM in their CFS references in the GWI report. They need to differentiate CFS and ME:
CFS is ME, but without PEM (post exertional malaise).
If the contract goes forward, this seems to represent our only possibility of getting a fair diagnosis definition. This may be the only win/win that could come from this dog and pony show and I feel it’s important to somehow pose this option to them.
Pingback: Enlander: New Academy for ME - Shout Out About ME
Pingback: Enlander: New Academy for ME - Shout Out About ME
Pingback: Enlander: New Academy for ME - Shout Out About ME