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.

Of course, many people are grateful
for what you have done for the ME/CFS patient community in the past
. It is unfortunate to have to ask you to address these issues now.

Sincerely,
Joan Grobstein, M.D.

24 comments:

  1. Well of course CAA and Pandora's Advocate Bob Miller's statement was allowed. As long as you support these 2 orgs you seem to stand on the side of the government. Just the way the government likes it.

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  2. wow, i was not aware of these events and i thank you VERY much for bringing it to our attention. that patients that had traveled to the meeting at their own expense should be treated this way, without any warning of change in protocol or whatever! horrendous. they should be reimbursed. it was also odd that entire second period for public comments on may 10th was down for at-home viewers. i wasn't thinking at the time that there was a conspiracy or anything, but now i'm beginning to wonder! i've never been able to find these public testimonies. ty again. things are heating up, and perhaps this is a good thing.

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  3. Why was Bob Millers handout allowed and while others could not even get in never mind pass out papers. ANd the CAA was given plenty of time once again. Friends of certain people always get preferential treatment. It's all politics as usual.

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  4. Wow... I don't know what else to say other than, I am appalled! To deny one specific group of American citizens - disabled citizens at that - their constitutional rights and then to belittle them and treat them in a condescending manner is more than atrocious, it's criminal!

    I am livid! If I was there and treated in that manner I am certain I would have been arrested.

    I am a disabled veteran of the Vietnam war. I love this country and would give my life for it if called upon to do so.

    To whoever was responsible for this action, "Who the hell do you think you are?"

    Congress should be made aware of this. I urge all people reading this to copy and mail or email this to their Congressmen and Senators. This cannot be allowed to be ignored. We have been without a voice too long but that doesn't mean that we are a lesser class of citizen.

    John Buettner

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  5. I did not know these things happened, and to be frank, I am appalled. And disappointed in Wanda Jones. I hope she responds to Dr. Grobstein's letter.

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  6. When Dr Jones announced the dates of the CFSAC meeting, and then made the call for requests for testimony time, I emailed her and told her she had better order up a larger room this time, as many from around the country were planning on attending. The room was crowded, but there were seats available even while people were being turned away.

    I beg to differ with the CAA and PANDORA basher: Bob Miller is respected by all the patients and .orgs in the country, including the WPI. His testimonies have been truthful, factual and vehement. All he has ever wanted is just treatment for all patients, and he will work with anyone, any .org in order to get it. When all patients work together for the good of all patients and nothing else, we will command respect.

    I was treated with great respect and was told by a new employee at the OWQR that she would work very hard to help patients and see they get the care they need. I believed her to be sincere.

    I feel sure Dr. Jones will see that the issues raised by Dr. Grobstein will be addressed. I think Dr. Jones' leaving to be in Sebelius' office made this meeting less organized/handled than previous ones, as witnessed by the lack of printed testimonies at the back, and the short period of time from announcement of dates and the call for testimony submissions.

    From the way I understand it, seven security people actually watched that group make the protest video right on the property and did not stop it. That wasn't heavy-handed. I think some things got lost in translation in the transition of Dr. Jones from one office to another, and maybe in the turnover of the reins to someone else.

    I do not believe there was harmful intent, but maybe ignorance on the part of newer people to the CFSAC meeting.

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  7. This is a false statement, Anonymous.
    "I beg to differ with the CAA and PANDORA basher: Bob Miller is respected by all the patients and .orgs in the country, including the WPI. "

    I am a longtime M.E. sufferer and I certainly do not respect Bob Miller. He is Dennis Mangan's go-to guy to keep patients in line. His affiliations are well know. He has long been a champion of the CAA, and so many patients have now figured out the CAA's failure to accomplish anything for sufferers that there is now a petition to disassociate from the CAA.
    Bob Miller is an administrator of the PANDORA/mcwpa cause on Facebook. Obviously he is someone Dennis Mangan and other people from the NIH are favoring to try to keep M.E. patients quiet and not continue with their advocacy which has lately been troublesome to the NIH employees.

    Thank you, Dr. Grobstein, for making this injustice public. I am appalled. Is there anything patients can do?

    Patricia Carter

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  8. Bob Miller was attacking the WPI and Mikovits only the other month. I don't know why anyone would respect him or not think he is the mouth of the CAA.

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  9. I attended both days of the CFSAC meeting from beginning to end and I had a very different experience of the meeting.

    I did have a friend who had a problem getting up to the room on the first day but she was able to finally get in. That should not have happened and its not clear to me right now why it did. Its also unfortunate that there were issues with real time viewing of the meeting for people viewing over the internet. I know that in that instance, Dr Jones did her best to address the situation and let people watching remotely know what was happening.

    But beyond that, I did not observe any staff shouting at anyone and no one ever kept me from sharing information with the rest of the audience. I found the staff to be very respectful, helpful and approachable. I was able to go to the rest room and the cafeteria whenever I wanted. They did escort me to the cafeteria but that is fairly typical procedure at institutions and large companies.

    As far as CAA being 'given plenty of time once again' as one commenter observed - they were on the waiting list to speak and when time became available for the waiting list, they had a slot like everyone else. I did not observe them getting more time than anyone else.

    I agree with Anonymous above - there was no harmful intent here.

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  10. Why is the CAA always on the waiting list? Why did they automatically get to organise a State of Knowledge conference for a disease they are not actually interested in?

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  11. Those who do not make human beings the center of their concern soon lose the capacity to make any ethical choices, for they willingly sacrifice others in the name of the politically expedient and practical.

    Taken from 'The Root Is Man' by Dwight Macdonald

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  12. I appreciate that the small, short protest outside was allowed and also the speed with which the video of the meeting was posted. However, the problems of access, speech, respect and accomodation voiced by Dr. Grobstein really bother me. This can't be allowed to happen again. I was not at the meeting, but I believe Dr. Grobstein to be an entirely credible source.

    The U.S. Supreme Court has held that the right to free speech is the "one fixed star of our constitutional constellation" around which the rest of our constitution and government revolves. Court has been equally clear that the very heart of the right to free speech is the right to communicate about and criticize the government and that the right to hear is central to the right to speech, for the right to free speech is meaningless if citizens' right to hear this speech is encumbered. Both of these rights were trampled upon and must not be again.

    -Justin Reilly, esq.

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  13. fwiw, I have sent my comment above to wanda.jones@hhs.gov, nancy.lee@nih.gov and howard.koh@hhs.gov.

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  14. I agree with what one person said above, if this was a public meeting and people got turned away, even though the room was not full, they should demand a reimbursement.

    Also incidents like this must be picked up by the media. This is one of the media's roles in a democracy, they must point their finger at such practices.

    It shows that it's necessary for the ME/CFS community to make better use of legal means. We must demand and, if necessary, enforce our rights. Just as any other group does.

    I don't say we should look for trouble, not at all, what we need is a constructive dialogue with governments and public institutions, but if they don't want to offer this to us, we must go another route until they change. The question is how to successfully exert pressure on them?

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  15. You know, I wish people would stop attacking individuals like Bob Miller for what he does or doesn't do. First, he doesn't control what happens at CFSAC. As some people have done, if you are concerned about these issues, write the the government, Wanda Jones, media, etc.

    Secondly, in any movement (civil rights, environmental protection, women's lib, etc.), there are different ways to approach a problem and convince the opposing party and if someone chooses to work from the inside/ quietly vs. the outside/ loudly, they shouldn't be criticized too much for that. After all, different opposition groups also get convinced in different ways. Disagreeing with someone's tactics doesn't mean you can't respect them. The main issue is that we are working towards a common goal: to find a cure for ME/CFS. It's only in hindsight we realize which tactic or tactics worked effectively.

    I am not a historian but what I know of the civil rights movement is that SNCC, known for the students who sat at lunch counters among other things, were viewed as radicals initially by some more conservative groups. Ultimately, SNCC's actions did influence alot of people. On the reverse side, in the movement to remove homosexuality as a deviant behavior from the American Psychology Association manual, it was homosexual psychologists and their supporters working quietly from within APA that ultimately influenced APA's stance.

    So let's not argue amongst ourselves and instead save what energy we do have to work toward our common goal. Frankly, I don't have the energy to criticize as my energies are focused on other things.

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  16. @Justin. I guess where ME is concerned free speech only exists if you work or advocate for the CAA/Pandora. Excuse me we may be disabled but we can speak for ourselves. We don't need these orgs taking up time that patients could use to advocate for themselves. Many showed up to do just that. And to be treated like this is shameful.

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  17. I think in every country patient organisations should find a law firm that is willing and capable of taking on such cases.

    The phone number and email of that law firm should be known to every person with ME/CFS.

    And then, next time something questionable like this happens, the people treated this way will record everything on video on their cell phones and dial this number.

    An attorney can then explain to the security personnel what coercion means, for example.
    If they don't understand, you will consult with this law firm about the next steps.

    The law is pretty clear and it applies, no matter wheter some people like it or not. It's a matter of using it.

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  18. Dr. Jones' response to Dr. Grobstein:

    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 Megan’s 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.

    ran out of characters- continued below.

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  19. Dr. Jones' response to Dr. Grobstein, contd:

    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. I’m 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. You’re right that no one should be shouted at—and so, we’ll 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.

    Wanda K. Jones, Dr.P.H.

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  20. I still do not understand why they distributed the handouts of Mangan's little buddy Robert Miller and no one else's handouts got distributed.

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  21. To quote Mindy Kitei's "We Are Not Crumbs" editorial from 2/6/2011, the ME/CFS community talks and talks and then we complain and get mad and then we get really mad and threaten blah, blah, blah until we eventually just accept the crumbs.

    Mindy points out that "Patients have the power. It’s my view that they don't realize that they have the power, and they haven’t become organized enough to harness it. But once they harness it, they can’t back down, or the government will clamp down harder than before”.

    The only way to get people and the government to do the right thing is to stand up to them. Every kid learns that when you stand up to bullies, they get afraid and back down. For the government to be afraid of ME/CFS patients, it’s going to take a lot of organization and thousands of people rallying against them. It can be done. But until there is organized action, nothing will change.

    There already is a blueprint, ACT UP, for coercing the government to fund biomedical research. Most HIV/AIDS patients, even without treatment, have more energy than ME/CFS patients to coerce the government, but ME/CFS patients have the Internet and email, which ACT UP didn’t have 25 years ago.

    She goes on to quote key excerpts from AIDS activist Larry Kramer’s 2007 speech, “We are not crumbs. We must not accept crumbs.” It highlights the warrior tactics ACT UP used to usher in effective government cooperation and drug treatments. One thing that struck me is Kramer’s belief that if you want justice, fairness has to be tossed out the window.

    “Our days of being democratic to a flaw at those endless meetings must cease,” Kramer said. “It has been a painful lesson to learn but democracy does not protect us. Unity does.” Being polite, fair and reasonable doesn’t cut the mustard when you’re dealing with the government, as the HIV/AIDS patients found out 25 years ago and as ME/CFS patients surely know by now. Being fair got McClure on that panel. Being fair hasn't gotten WPI and NIH research dollars.

    Kramer goes onto say “These are just a few of the things ACT UP did to make the world pay attention: We invaded the offices of drug companies and scientific laboratories and chained ourselves to the desks of those in charge. We chained ourselves to the trucks trying to deliver a drug company's products. We liberally poured buckets of fake blood in public places. We closed the tunnels and bridges of New York and San Francisco. Our Catholic kids stormed St. Patrick's at Sunday Mass and spit out Cardinal O'Connor's host. We tossed the ashes from dead bodies from their urns on to the White House lawn. We draped a gigantic condom over Jesse Helms' house. We infiltrated the floor of the New York Stock Exchange for the first time in its history so we could confetti the place with flyers urging the brokers to 'SELL WELLCOME.'

    Sound outrageous? Civil disobedience is defined by the World English Dictionary as "a refusal to obey laws, pay taxes, etc: a nonviolent means of protesting or of attempting to achieve political goals.

    To quote Kramer again “Slowly we were noticed and even more slowly we were listened to..." The rest we all know is history. Millions of dollars began pouring in to HIV/AIDS research and continues to pour in. Not long ago AMFAR rose millions of dollars in one night!

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  22. Ran out of characters...

    Anyone that has not read Mindy Kitei's editorial can find it here:

    http://www.cfscentral.com/2011/02/we-are-not-crumbs-editorial.html

    It is my belief that things will never change for us because we will never be willing to get really organized as one unified cohesive voice. If we are not able to exert enough pressure on the government to get the research dollars we so desperately need then all our lives will pretty much look the same in 25 years.

    We will continue to accept the crumbs of Dr. Jones’ excuses until we go away. Which is exactly what they want us to do until the next time and some variation of the same thing happens to us. But we will continue to "be nice" and “polite” and the government will continue to push us off because we have proven to them that they can get rid of us pretty easily. We are a gullible bunch and it makes me sad.

    Just in case you missed Mindy's recent testimony at the CFSAC meeting, it was quite powerful.

    http://www.youtube.com/watch?v=qphC-G2DP3s

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  23. For nearly four centuries the ghastly neurological disease ME has been occuring, under various names. Annual epidemics are on record since 1934, Los Angeles,CA. Called in to observe an ME epidemic in Lake Tahoe,NE in 1985, the CDC invented CFS, a term useless for ME epidemics as patients had to report having felt fatigued for 6 months prior to presenting, and which denied the characteristic diagnostic signs and symptoms of ME. The ME experts, Dr Shelokov and Dr Parish, walked out of the meeting in protest. Until CFS patients insist on proper diagnosis and medically appropriate treatment of their diseases, the mistreatment will continue. Until ME patients insist on their disease being rapidly and accurately diagnosed and treated, the mistreatment will continue. Those interested can read about this in The Hummingbird's Foundation for ME www.hfme.org

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