Cut Back or Cut Out?

Last week, the CFS Advisory Committee announced via its email listserv that the fall meeting will be held on November 12th and 13th. Advocates were shocked to learn that the meeting will be held from 12pm to 5pm each of those days (as opposed to the two full days we usually have), and that the meeting will occur via webinar and not in-person. So is this a cut back from budget necessity, or is it another attempt to cut patients and advocates out of the process?

Sequester and Legalese

According to the email announcement, “Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats.” As of this writing, I have been unable to independently confirm such an instruction to advisory committees.

I have not received a response to my email inquiry to the DHHS Committee Management Officer. Furthermore, several HHS advisory committees have not made this move to webinar meetings. Both the National Vaccine Advisory Committee and the Advisory Committee on Human Research Protections are holding in-person meetings this fall. This move to a shorter webinar meeting could very well be an effect of sequestration. All the agencies have had to cut back. But are all committees required to change their format? Or was CFSAC singled out for such a cutback by someone at HHS? We don’t have enough information to say for sure.

It is legal for a federal advisory committee to meet via webinar or other remote communication. However, the meeting must still comply with the requirements of in-person meetings: it must be accessible to the public; the forum must accommodate a reasonable number of members of the public; anyone can file a written statement; and anyone can speak (within agency guidelines). The meeting must be accessible in real time, and the Designated Federal Officer must be continuously present.

Neither the CFSAC Charter nor Bylaws mandate the number of days for meetings. Traditionally, there have been four days of meetings per year. In May 2010, there was a single day meeting, but that was to free up the budget for a full day of science presentations in October (plus a two day meeting). As much as we are used to those four days a year, there is no requirement for it. But what will they cut? Will public comment time be reduced? There never seems to be enough time to cover the two day agenda. What steps will be taken to make discussion more efficient? Even if the budget cut is unavoidable, how will CFSAC ensure a minimum negative impact?


The IOM fiasco has created grave concerns in the advocacy community. And CFSAC has fanned the flames with this statement in the listserv announcement:

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria.  When the contract is finalized, we will provide additional information via the CFSAC listserv and website.  This topic will be included as an agenda item for the November webinar. (emphasis added)

Now honestly, what the hell does that mean? So far, I have been unsuccessful in my attempts to get more information. Regardless of what I am able/unable to learn, I think it is abundantly clear that the fall CFSAC meeting is going to be controversial and contentious.

First, we have the unresolved allegations of attempts to intimidate voting CFSAC members for expressing their views. To date, there has been no substantive response to advocates’ request for a formal investigation. As we said in June, “Threats or intimidation of voting members for expressing their views, particularly by the DFO, would materially impair the CFSAC’s ability to formulate recommendations to the Secretary.” There is a huge cloud hanging over this meeting as a result. Will we hear the full and honest opinions of the voting members? Or will the webinar format make it easier to silence certain opinions or select individuals? I’ve moderated phone meetings myself, and it is extremely challenging to give everyone an equal chance to speak, especially when there is disagreement. Without a way for members to virtually raise their hands in some way, I fear that it will be difficult for some members to get a fair shot – even if only because some are more outspoken than others.

Second, the prospect of an IOM contract to create a new clinical case definition has galvanized the advocacy community. We were able to force the withdrawal of the original contract, but the issue is clearly not dead. Advocates aren’t sitting around waiting for the fall meeting. Instead, action continues in the effort to ensure that actual experts are the majority in any case definition effort – and more action is planned. But the fall CFSAC meeting is an important forum for the community to express its views, and I have no doubt that we would have done so. HHS must know this too. The move to a webinar meeting format deprives us of the ability to speak through actions such as signs, standing together during public comment, and other silent physical actions. We have other options, and they are being explored. But intentionally or not, HHS has partially silenced us by canceling the in-person meeting. In the current advocacy climate, it is difficult for many people to trust that HHS did not intend this effect.

Not Backing Out

So is the reduction in meeting time and change to webinar format purely an effect of sequester? Or is funding a convenient reason to make changes that attempt to silence voting members or advocates?

From my perspective, it doesn’t matter. We’ll never be able to prove a malicious intent to silence advocates. And even if the change is purely a byproduct of sequester that will affect every advisory committee, the bottom line is the same. It will be more difficult for the committee to accomplish its job in the time allotted, and in a way that ensures equal input from the voting, non-voting and ex officio members. There will be less time and less opportunity for us to provide input and make our views known.

So what should we do? We adjust. We find ways to express our views to HHS and the CFSAC members. If we are once again victims of budget priorities, speak louder. If this is an attempt to silence us, speak louder. Does everyone hear me? SPEAK LOUDER. I am not backing out. You shouldn’t either.


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9 Responses to Cut Back or Cut Out?

  1. Ess says:

    We hear you, Jennie, and definitely agree; giving up is not an option! It is incumbent on the ME/CFS community to continue to advocate and speak up in a constructive way as we do. The scientific research community world-wide is working hard on this disease trying to uncover the answers to its complexity–conversely, the ‘imposed’ politics that surround this disease do not improve our health.

    Let’s hope for a break-through soon!!

  2. Liz Willow says:

    Here’s and idea: Let’s write to Congress and the White House! A sample letter and instructions on how to contact your Congressional delegation and President Obama’s science advisors are included in this post.

  3. Kathryn Stephens says:

    It is strange that this will be the webinar due to sequestration; how convenient for CFSAC and the DHHS.

    Jennie, the only good thing is that maybe we have the DFO running scared because we will not be silenced by any action they take, including the IOM fiasco.

    Writing Congress and the White House can be effective if we have one voice. I would like to see us all work together to be heard. A phrase only, if we will have only a couple of minutes during the decreased time that will be allotted to us.

    It seems obvious that the CFSAC is to pacify us and our only future action may have to be political and Congressional.

  4. Pingback: We encourage you to take action and to share widely | Speak Up About ME

  5. Molly says:

    Jennie, If the meeting agenda is stated as 12-5 each day, is their any meeting regulations that prevent a closed session of the Board from 8-12? Is the entire membership to be present in person, or is this dominate affect going to have the Voting Members locked out with only the 9 to 5’ers, ExOfficio panel, and the DFO in real time? How is this going to impact the Charter Renewal?

    • Jennie Spotila says:

      These are good questions. The committee can meet in private, but the DFO has to issue a close meeting designation. Here’s what the charter says about that:

      When it is determined by the Secretary, or other official to whom authority has been delegated, that a meeting will be closed or partially closed to the public, in accordance with stipulations of Government in the Sunshine Act, 5 U.S.C. 552b(c), then a report will be prepared that includes, at a minimum, a list of the members and their business addresses, the Committee’s functions, date and place of the meeting, and a summary of the Committee’s activities and recommendations made during the fiscal year. A copy of the report will be provided to the Department Committee Management Officer.

      To my knowledge (based on a FOIA request), this has never been done with CFSAC. Regarding whether the committee needs to be present in person, there is no requirement they do so. That is one of my concerns about switching to this format. It’s very difficult to moderate a meeting and give everyone a fair chance to speak when you are not all in the same room. Finally, regarding Charter Renewal, I really don’t know. The charter needs to be renewed by next September. I do not know if it will be on the agenda for this meeting.

  6. I’m glad the meeting got cut-back, and I wish the CFS budget got cut to $0 too.

    Because maybe then it will dawn on CFS & MEers’ that the government never listened to you nor does it care to listen whatsoever.

    CFS & ME are not science. They are 100% political illnesses. Maybe this cut-back will help CFSers’ to WAKE-UP and figure out progressive strategies!

    Fighting political oppression does NOT happen in a meeting. It does not happen on a webinar. It does not happen sitting at home surfing the web. –>


    If CFSers’ want to learn what they need to be doing —> watch this award-winning documentary about how “ACT-UP” was born —>

  7. Holly says:

    Thank you for sharing this information. Is there an email template you have that you can share? Is there another way that we can speak louder? I am limited in what I can do like so many of us but I would like to do whatever I can.

  8. Justin Reilly says:

    I am generally a fan of teleconferences and similar means of cutting costs and commute time, so I actually support that. However, why was the meeting time cut in half? That is way too extreme. As you have noted, we need at least two full days, probably more, to conduct business.

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