We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well.

If you want to offer public comment by telephone, you must register by Monday, November 24th at 5pm. If you want to submit written comments to the Committee, those comments are due November 24th at 5pm.

That’s right. You have less than a week to write public comment and submit it to the committee. This is an absurd requirement for the ME/CFS patient population, and HHS should be well aware of the level of disability we contend with. They should be well aware that giving us less than a week to write comments is unreasonable and unfair.

HHS may claim that we actually had more than a week’s notice, since a “save the date” note was put on the CFSAC website weeks ago. I have two responses to that. First, they cannot and should not assume that all patient advocates are watching the website or the CFSAC mailing list. That’s why CFSAC is required to provide public notice in the Federal Register 15 days before the meeting, and in the past the notice has been published much more in advance. Second, the Committee is asking for testimony on the topics of Centers of Excellence and patient registries. Yesterday was the first time that request became known, and therefore we have less than a week to prepare testimony on the requested topics.

There is dissatisfaction about the meeting agenda, as well. Brief comments on the P2P report on opioid use in chronic pain will be made by Dr. Sue Levine, and Bob Miller will speak briefly about the ME/CFS P2P meeting. I think it is significant that the NIH ex officio will not be making these presentations. Dr. Levine will also speak briefly on the “IOM Report Rollout.” I don’t know what will be covered in any of these presentations, but it will be followed by two hours of committee discussion.

There is no planned discussion of the AHRQ evidence review, although a source told me that such a discussion was requested by at least one member of the public. Also absent from the agenda is any discussion of NIH’s response to the Committee’s June recommendations. That response made it clear that NIH will not fund a central data repository, nor will it issue an RFA. So why is the Committee preparing a recommendation for Centers of Excellence funding when NIH has already refused to fund smaller scale recommendations?

Finally, there is great dissatisfaction about the scheduling of this meeting one week before P2P. It’s the holidays, a very challenging time of year for patients because of the extra demands on time and energy. Holding the P2P meeting in December is bad enough. Stacking a CFSAC meeting on top of it – just one week before – is a heavy burden for patients to bear.

I’ve been asked if we should boycott the CFSAC meeting. I think if you only have the energy and capacity to pay attention to one meeting, then pay attention to P2P. Watch that meeting online and submit comments and questions through the mechanism NIH has said would be provided. The P2P meeting and report is MUCH more important than this upcoming CFSAC meeting. But if you are able to do so, watch the CFSAC meeting and submit public comment.

A patient relayed this story to me from a CFSAC meeting some time ago: When she requested an accommodation at a CFSAC meeting, an HHS employee told her that if she was so sick that she needed this particular accommodation, then she shouldn’t be attending the meeting.

This is the attitude that patients hear in circumstances like this one. Too sick to write public comment in a week? Too sick to watch meetings via webinar in two weeks running? Then you shouldn’t be participating.

I know that CFSAC members care about the ME/CFS patient population. Serving on CFSAC is no picnic, but they do it because they want to help people with this disease. But let’s be clear. When CFSAC gives short notice of comment requirements, when meetings are scheduled in such a way that it becomes impossible for patients to attend, what we hear is that we don’t matter. Whatever the good intentions of CFSAC members may be, the signal to the ME/CFS community is that if you are too sick to keep up, then your voice doesn’t matter. And that’s just not right.

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13 Responses to CFSAC SNAFU

  1. Ren says:

    Can we file a formal complaint(s) with the Department of Justice for discrimination based on disability?

    • Jennie Spotila says:

      It’s been tried in the past, Ren. The videocasts came about in part because of a successful filing claiming disability. But the story I relate of an HHS employee making that statement to a patient was reported and the complaint went nowhere. Still, it wouldn’t hurt to continue to build the paper trail on this.

      • Jean Harrison says:

        We can make the claim – again – that because of our disability we are unable to process information on a solely audio basis. It’s true.
        Section 58 of the Rehabilitation Act is where you want to go. I might still have the files on the case we built against the CFSAC all those years ago.

  2. Ess says:

    It is more than blatantly clear that those pulling the strings with CFSAC and beyond have absolutely NO intention to help ME/CFS patients–quite the opposite.

  3. Carrie says:

    Nothing says “we value your input” like “stay home and shut up”.

  4. Anonymous says:

    I agree with your sentiments Jennie but one thing I do want to distinguish so readers are aware of because many are not so is that CFSAC members are divided into officio and ex-officio members. The former are outside advisors unaffiliated with the government generally while the latter are government employees. The former can be nominated by members of the public and usually make reasonable recommendations. What is difficult are the ex-officio ad governmental employees. While some are great, others place obstacles like the ones you mention in your post. The officio members can make suggestions and do but don’t have the authority to decide or push things. I want to point this out because if people want to complain about the process, they should know where best to target their concerns.

    • Jennie Spotila says:

      That is correct. Both the agenda and the meeting mechanics of public notice, comment sign up, etc. are all the responsibility and domain of the Designated Federal Officer. And while it was announced that Barbara James will be replacing Dr. Lee as DFO, my information is that this has not actually happened yet. Dr. Lee is still the DFO.

  5. Billie Moore says:

    I want to expand on what “Anonymous” has said. CFSAC voting members (the government’s ex-officios are not voting members) have no say in the creation of the agenda. It used to be the case that a patient advocate was on an agenda-forming committee, but that patient voice was eliminated one or two years ago. Now the agenda is set by the DFO and the chair, the latter of whom must bow to the wishes of the DFO. In short, the agenda is now in the almost total control of the DFO and others in the background at HHS.

  6. Billie Moore says:

    I find no restriction against having others on the agenda-making committee besides the DFO and chair in the charter, at least. A few years ago apparently the then-DFO took a more open approach to agenda setting and had a patient advocate on the committee. But that patient advocate wasn’t a good girl, i.e., had differing opinions with the current DFO, and that p.a. position was eliminated. That is my understanding.

    • Jennie Spotila says:

      You are correct. A DFO can invite others to provide input, while still being the one responsible for decisions. Donna Pearson is a patient advocate serving on the committee, so it’s not fair to say the position was eliminated, though.

  7. Billie Moore says:

    Jennie, I was referring to the agenda-setting committee on CFSAC. I know Donna is the current Patient Advocate for all of CFSAC. No one but Nancy Lee (DFO) and Sue Levine now set the agenda for CFSAC meetings, and of those two NL definitely has the final word.

    • Jennie Spotila says:

      Ah, now I understand what you meant. In the past, the agenda was set by the leadership committee comprised of the DFO, Chairman, and chairs of the subcommittees. No subcommittees anymore, so that leaves the DFO and Chair.

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