Monday, June 13, 2011

Dr. Joan Grobstein responds to Wanda Jones

A number of weeks ago I posted a letter from Dr. Joan Grobstein to Wanda Jones in which Dr. Grobstein addressed a number of "shortcomings" at the recent ME/CFSAC meeting.

Generally people in the position of Wanda Jones will do one of two things. They will either reply immediately - or not at all. Let's give credit to Wanda Jones for her speedy reply. Her letter follows here:

"First of all, Dr. Grobstein, I assure you these circumstances were NOT at my direction. Indeed, registration is not required for a public meeting, but we are limited by capacities set by fire codes. We have little history of having more than 50 people in attendance at a CFSAC session, and we had no reason to think we would have more demand than we could accommodate this time.

As soon as I heard that people were being turned away, I went to the lobby to find out what was going on. There was a miscount of people signed in, and staff thought we were at the fire limits for the room that second morning. Only people who had already signed in and were returning were able to enter; we straightened out the counts, and in fact added 8 more chairs. To my knowledge folks who came after things were clarified were allowed entry, at numbers up to the room capacity. We had very few, if any, empty seats the morning of day 2. We also looked for several people who had not returned for day 2, so that further enabled attendance by others. I am not aware of the guards turning people away, but we will ensure that the procedures for managing building entry are clear for future meetings.

Rules governing Federal Advisory Committees require that all materials provided to the Committee as part of the proceedings must be distributed through the Designated Federal Officer or designated staff. Individual leafleting or leaving materials (including testimony) on a table in the back of the room is not permitted, the goal being that ALL materials provided are part of the public record. (We have discontinued providing copies of everything because of the cost; when we analyzed what was left over, we found ourselves recycling over 80% of the copies, not a good use of taxpayer funds. All the material provided as part of the meeting is posted on the CFSAC website, and is in a notebook at the back of the room for viewing during the meeting.) We did distribute copies of Megans testimony to the members, and it will be posted on the website, as is all material submitted. Materials at the back of the room are to be placed there solely by the DFO and staff, not by audience members. We monitor the tables for new additions and remove those items as we find them. This is how CFSAC has been managed since its first meeting in 2003, and this policy is consistent with the regulations governing Advisory Committees.

I was not aware that everyone was removed from the meeting room during lunch. That has never been our policy, as we recognize that some people bring their own food and others simply need the quiet, as you have expressed. That room is engaged by us for the whole day, and again, going forward, we will ensure that a staff member remains in the room. We have been admonished ourselves by HHS Security, for failing to observe the requirement that we accompany visitors whenever they leave the meeting space. Im sorry this seems obtrusive, but as you know the configuration of the meeting area and the nearby restroom is only minimally acceptable for a large meeting. Youre right that no one should be shouted at, and so, well address these issues with the folks who are providing onsite support for future meetings.

Finally, your suggestion of recapping the recommendations at the end of the meeting is a good one. This meeting, unlike others, generated recommendations as it progressed, rather than in the flurry of the last hour or so of the scheduled time. It would have been good to restate all the recommendations at one time. Three recommendations endorsed by the Committee will be submitted to the Secretary by the end of May. She has 30 days to review them before we post them. Again, this is a standard procedure for advisory committees run by HHS.

Thank you for taking time to point out some of the logistical and other concerns with the May 10-11 CFSAC meeting. As the responsibilities for managing the Committee had already begun their transition, resulting in many new people assisting with various aspects of the meeting, there were bound to be some miscommunications and problems. We are committed to providing a fully accessible meeting, and your feedback is helpful in attending to the onsite issues. "

The problem with rapid responses is that they are rapid. Too much comes out in misdirected fashion. A more measured, reflective response might have served Wanda Jones better in this situation - a situation, incidentally, that she created herself.

Nevertheless we will leave it to Dr. Joan Grobstein to point out the deficiencies in Wanda Jones response. Dr. Grobstein's letter follows:

Dear Dr. Jones,

Thank you for your very quick reply. I wish I was capable of replying as quickly.

I have some concerns about your reply.

First, the literature distribution policy has not been consistent since 2003. At the first meeting I attended in October, 2009, I brought copies of my oral testimony and handed them to a staff member who placed them at the back of the room. There were many other copies of testimony on the table. Audience members were free to take these copies. I understand that the government may not want to pay to make copies if few are actually read. However, it does not seem reasonable to prohibit the public from bringing their own copies, handing them to a designated staff member who can save a copy to incorporate into the public record and then make them available to whoever wants to take one. We are all willing to follow rules, but the rules must honor our right to free speech and assembly, which is not suspended when we enter a room where a Federal Advisory Committee is meeting. Also, the rules should be clear and consistent from meeting to meeting. Any changes should be announced in advance, and all rules should honor basic constitutional rights.

Second, you have not explained why CFSAC staff was not permitted to distribute Charlotte von Salis' copies of the Overview of the Canadian Consensus Definition to Committee members. She referred to this document in her testimony, so it was already part of the public record. She also was not permitted to have CFSAC staff distribute copies of a petition, signed by over 550 members of the patient community, stating that they do not recognize the CFIDS Association of America as their representative agency ( This was also part of her testimony and was also already part of the public record. No member of your staff volunteered to distribute these documents, as occurred for other people who submitted written material. It appears that rules for distribution of written material were not the same for all audience members. Ms. von Salis has written to you about this matter and other difficulties she experienced at the meeting. Meghan Shannon has also documented her experience. I have appended Ms. Shannon's documentation at her request. It is important that the rules not only be consistent over time, but that they be applied consistently to audience members with differing points of view.

Third, you have not explained why Ms. von Salis could not give copies of these documents to a fellow audience member when asked to do so. This is not "leafletting". This is free speech between two private citizens. It is odd that one's normal rights are suspended when entering a public meeting.

Fourth, you have not addressed the reality that people were told this meeting was not a public meeting and were turned away. You state that you did not direct the "circumstances" that led to people being turned away. However, somebody did. Somebody told the guards at the front of the building that this was not a public meeting. Somebody needs to take responsibility for this misinformation to ensure that it does not happen again. People travel a long distance at considerable personal expense to attend this meeting. No one should be turned away. We need to know who to contact if this situation arises again. It may have been a mistake, but it is a violation of civil rights to deny access to a public meeting. The people who were prevented from entering also are protected under the American Disabilities Act.

Fifth, you have not indicated what the solution to possible overcrowding in the meeting room will be in the future. The threat of not being admitted to the meeting because of overcrowding is a significant deterrent to attendance by this disabled community. A plan for accommodation must be in place.

Sixth, it is extremely important that your staff be aware of the physical limitations of this patient population. I was told by a staff member that I was not allowed to eat in the meeting room. Your response indicates that eating in the meeting room is permissible. Patients should have been allowed to remain in the meeting room. The rules regarding use of the room need to be clear to both staff and attendees. If a larger room is used for the next meeting arrangements for eating need to be clear. This patient population is not highly mobile. Most patients require regular nourishment, including snacks. Also, many patients have orthostatic intolerance. Prolonged standing should be avoided. It would be very helpful to have footstools available in the meeting room. Accommodation for these needs is necessary.

Thank you for addressing the need for courtesy by all staff members. I look forward to substantive plans to address the above six concerns.

Finally, thank you for addressing the important need to review all recommendations at the end of the meeting to make sure that everyone understands them.


Joan Grobstein, M.D.


  1. Joan, think a moment.

    Fight the disease, not the people who are trying to help us.

  2. Are you from the CAA?

    Think about this for a moment. If they are truly trying to help us, then they can begin by treating us as first class citizens, and demanding that their agencies do the same. Someone has to point out the obvious.

  3. @Anonymous, think a minute. You're kidding right?

  4. @Anon, I think Dr. Grobstein's was an appropriate response.

  5. Thank you for your response, Dr. Grobstein. These are valid concerns and they should be addressed before the next CFSAC meeting.

    Patricia Carter

  6. This is the CFSAC. It is not an MEAC or ME/CFSAC, which would make no sense, any more than ME/CFS does. The accommodations are adequate for CFS, which is what they go by. Concern about handouts is one thing, but distribution of the Canadian def? Would tell you absolutely not to worry. Bet they've had literally thousands of copies handed out over the past several years.