Sunday, May 22, 2011
An open letter to Wanda Jones
Dear Dr. Jones,
I am addressing my concerns to you because you were the Designated Federal Officer for the CFSAC meeting on May 10 and 11 of this year. I understand that future responsibility for CFSAC is passing to Nancy Lee, but you are responsible for the events that transpired at that meeting.
You were aware that people who were attempting to attend the CFSAC meeting were turned away from the HHS building on the second day, May 11. I know of at least eight people, myself included, who were told by the guards at the entrance to the HHS building that the CFSAC meeting was not a public meeting, and we were not permitted to enter the building unless we were on “the list”. This is obviously false. The Federal Register states that the meeting is open to the public. Some people were also told by guards that we were required to register for both days of the meeting. I have attended three previous CFSAC meetings; registration to attend the meeting has never been required. Four of those who were denied entrance on May 11 had entered the building without challenge on May 10. All of those denied entrance had travelled a considerable distance with the attendant expenditure of time, energy and money, and most were disabled patients.
Later we were told that there was a limit to how many people could be in the room because of fire codes. This clearly points to the need for planning for a larger room or some way to handle overflow. In any case, information obtained from someone in the room stated that all seats were not filled on the morning of May 11. I observed that there were many empty seats in the afternoon when I was finally allowed in.
Staff indicated that these new policies had come from you. Sick patients and their family members spent money and time to get to Washington to attend a public meeting in a building which, as taxpayers and citizens, we own. Several people insisted on their right to attend the meeting and were ultimately admitted but were forced to wait at the entrance to the building for a long period of time. At least one person assumed he would not be admitted and left. This should never have happened. It must never happen again.
Turning to another matter, I have heard of at least four instances where members of the public were prevented by CFSAC staff from giving written information to committee members and, in one instance which I myself observed, even from giving a document to another audience member:
Pat Fero was not permitted to make copies of her excellent summary of recent NIH funding available at the back of the room.
Meghan Shannon was not permitted to pass out copies of her testimony and other literature to Committee members.
Charlotte von Salis was not permitted to give copies of a petition regarding concerns about the CFIDS Association of America or copies of the Canadian Consensus Definition, which were both mentioned in her testimony, to Committee members.
I personally observed an incident where Ms. von Salis was prevented from giving a copy of the condensed version of the Canadian Consensus Definition for ME/CFS to another audience member. A CFSAC staff member told her to "close her box and put it away".
I am not an attorney, but it seems to me that these incidents are violations of these three citizens' right to free speech and assembly. Meanwhile, I’ve been told that you yourself were observed distributing Bob Miller’s testimony to Committee members. Why was his testimony treated differently than Ms. von Salis’ and Ms. Shannon’s?
At past meetings, literature and/or copies of testimony were available at the back of the room. Information was passed freely between audience members and between audience members and Committee members. Why were policies arbitrarily changed without notice at this meeting?
People spend time and money making copies of testimony and other documents for distribution to Committee members and audience members. This exchange of information is vital to the advisory role of this Committee. There is no excuse for limiting the flow of information to Committee members as long as it does not disrupt the meeting. I cannot think of any reason why patients should not be allowed to exchange documents among themselves or distribute them to interested Committee members. We live in a democracy. We have freedom of speech. We are citizens of the United States of America.
Security at the meeting was extremely tight. We were told it was because of bin Laden's death. Meghan Shannon has talked with someone who works at the FDA, and was told there was no heightened state of alert at that agency on May 10 and 11. Several people were admonished in loud voices when on their way to lavatories or the cafeteria. This is an unjustified invasion of privacy. Usually only small, naughty children and prisoners are watched and spoken to in this way. Were staff members instructed to be insulting to patients and to raise their voices when they spoke to them? I observed no misbehavior among the meeting attendees. What can possibly justify treating law-abiding citizens, many of them disabled, like naughty children or criminals?
I was not permitted to remain in the conference room during lunch on the first day, which I wanted to do to get a little peace and quiet. Is this reasonable accommodation for disability? We have not been subjected to this level of scrutiny at past meetings. It is not clear why a group of disabled patients are treated as though they are a threat their own government. Our goal is to educate government officials about the severity of our disease and contribute to the solutions for the problems of one million Americans with ME/CFS. The current treatment of ME/CFS patients is a national disgrace.
The events that happened at the CFSAC meeting on May 10 and May 11, 2011, should never happen again. Attendees should not be shouted at. Attendees should be free to distribute literature to Committee members and to each other. Attendees should be allowed to rest in the conference room whenever they need to. Attendees should be free to come and go to the cafeteria and lavatories at will. These are basic rights. Above all, this is a public meeting. All who wish to attend should be accommodated.
It is surprising to me that these issues even have to be addressed. Who would think that American citizens would be treated in this way?
Finally, all of the Committee’s recommendations should be reviewed at the end of every meeting. Most patients are not able to watch or attend the entire two days of meetings. When I spoke to several people who attended or watched the meeting, including two Committee members, I got several different versions of the recommendations. Even the two Committee members differed in what they thought the recommendations were. It is important that everyone involved in the meeting have a clear idea of what the Committee’s recommendations are, as well as what progress has been made on previous recommendations. It is very important to review the recommendations during the time allotted for that purpose in the last session of the meeting, so that everyone understands them. Given that the meeting was adjourned almost an hour early, there was plenty of time to do so at the May meeting.
The recommendations from the May meeting are not yet listed on the CFSAC website. When will the recommendations be posted?
I am posting this letter on the internet, because I think it is important that people know what occurred at this meeting. I have also sent an abbreviated version to the White House. Many people will be interested in your reply.
. It is unfortunate to have to ask you to address these issues now.
for what you have done for the ME/CFS patient community in the past
Of course, many people are grateful
Joan Grobstein, M.D.