(Lack of) Progress Report

thumbs-downThe December 2013 CFS Advisory Committee meeting was controversial before it began, and honestly things only went downhill from there. I don’t think I have it in me to list everything that was wrong with the meeting, and I’m pretty sure you don’t want to read that whole list either. Let’s just focus on the lowlights: the tech, the wreck, and the waste.

The Tech

Let’s just set aside the challenges of webinar format. Let’s set aside Dr. Marshall’s valiant effort to make this meeting productive. Let’s even assume that the tech folks knew what they were doing. There is more than enough left to criticize.

There was no audio via the computer. You could see the slides, but that’s it. To hear the meeting, you had to call in. Of course, that was not clear in the meeting instructions, and so the public spent 15-20 minutes just trying to figure out what we needed to do to hear anything. There is no excuse for this. I’ve attended at least a dozen meetings using Adobe Connect. I can always get audio through my computer. I’m not aware of any technology limitation that prevented them from providing audio through the computer yesterday. Many patients rely on their cell phones and did not have five hours of minutes to burn to listen to the meeting. Others are not capable of holding a phone for more than a few minutes. And some are limited to dial-up, which means they can use the internet or the phone – not both. This webinar was inaccessible for too many people.

Next slide, please. Jeannette Burmeister said on Facebook:  Someone on Facebook (not sure if she wants her name associated with this publicly) “The words of the day: Can I have the next slide, please? Next slide? Next slide? Hello? Can anybody hear me? Can I have the next slide?” During the research working group presentation, there were several minutes lost to a back and forth about advancing the slides during which Dr. Lee pointed out that she could advance the slides but that no one else was seeing it. The episode culminated in something along the lines of “Take your hands off your mouse and let Paul advance the slides.” Yes, there are always technical glitches and problems with slides – all the time. And if this was the only glitch in the meeting, we would not even be commenting on it. But here’s my question: Why did they not rehearse who would control the slides (and how) in advance!!!???!!!!!!

So much dead air. The high-fluster episode of the day was public comment. Dr. Lee was not able to conference telephone commenters in. This resulted in 3 to 5 minutes of dead air prior to every comment. Dr Marshall tried to manage this – asking for patience, promising to get everyone in despite the loss of time, calling the break early to give them a chance to fix it. When my turn came, I was interrupted twice because my comments were not being broadcast, told to hang up twice so they could attempt to reconnect me, etc etc etc. Again, and I’m sorry for shouting, BUT WHY WAS THIS NOT REHEARSED IN ADVANCE?

Check Yourself, Before You Wreck Yourself

Thanks to Angel Mac and Lisa Petrison, we have a partial transcript of Dr. Lee’s comments at the end of the discussion on the Institute of Medicine study:

I’ve seen so much vitriol and personal attacks in email and blogs around the IOM study. I don’t see how this will be constructive going forward, given the opportunity before the ME patients and families.

Everyone I know working to make the clinical diagnostic criteria a reality has good intentions and wants to make things better for ME/CFS patients. Implying that IOM staff or committee members don’t have good intentions will not be helpful, and it could backfire.I had patient advocates apologize to me in private – when this happens in a public meeting or blog or email – (lost audio)

From my own notes, I can add that Dr. Lee went on to say that when we see people making these sorts of comments, we should call them out on it. Update to add: Claudia Goodell captured the quote as “Don’t make vitriolic statements that assume IOM panelists have bad intentions in a public forum. Those who do will be called out.”

Do you realize what happened here? A federal employee, acting in her official capacity as Designated Federal Officer of an advisory committee, just told members of the public how to exercise (or not) their First Amendment rights on a subject she personally works on in her official capacity. I was shocked. Perhaps I shouldn’t be, anymore, because every time I think we’ve seen rock bottom we sink further down.

Here’s the thing: ME/CFS advocates are like a family. The only thing we have in common is the disease that binds us together. We don’t always get along. Sometimes we have to fight things out, or tell each other how we’re falling short. And we will never agree on anything. But we can get away with it because of that family tie. We can say things to each other that no one else can say to us.

Dr. Lee, despite her official role with CFSAC, is an outsider to this community, regardless of what you believe about her motives, her capabilities, her decisions, or her personality. As far as I know, Dr. Lee is not one of us. That’s not a criticism; it’s a fact. Dr. Lee is not an ME/CFS patient, has not treated ME/CFS patients, and is not a caregiver for an ME/CFS patient – as far as I know.

It is not Dr. Lee’s place to tell me how to advocate, who to criticize or how to do it. I happen to agree that personally attacking people is counterproductive, but that’s my choice. It was completely inappropriate for Dr. Lee to publicly criticize the advocacy community. She’s free to do that in private all she wants. But her attempt to admonish us in public had the precise opposite effect to the one she intended: now we’re all criticizing her for these inappropriate remarks. Dr. Lee, please, just stop.

Wasted Opportunity, Wasted Time, Wasted Money

I have a very very long list of questions that were not answered yesterday. There were multiple questions that could have been asked during the discussion period, but no one did. For example, don’t we want to know who is serving on the steering committee for the Evidence-based Methodology Workshop? But Dr. Maier didn’t mention it during her NIH report and no one asked her. It was driving me bonkers.

The two workgroups provided interesting presentations, especially the Researcher and Clinician-Scientist Recruitment Workgroup. But because all discussion on NIH, CDC, and the two workgroups was shunted to the end of the day, most of the issues were not explored. That final discussion period was a chaotic mishmash of back and forth between the two workgroup presentations, other tangential issues, at least one minute spent figuring out how to get recommendation text posted (again, rehearsal? anyone?), and a maddening discussion about Wikipedia. The quickly drafted recommendations were not even actual recommendations and, as the group ultimately decided, needed a good deal more development.

Do you know what this meeting actually was? It was a status update. Neither workgroup has finished their charge (which in itself is fine!), although it’s not clear if the education workgroup realized that they needed to be developing some kind of output. The two agency reports were heard but not questioned. The only votes were 1) to allow time at the end for departing member comments and 2) to ask the education workgroup to develop more background for their recommendations. This meeting was a five-hour, taxpayer-funded status report.

Denise Lopez-Majano asked the question of the day in her public comment: if the Office of Women’s Health recognizes the need for an additional 1-2 day webinar meeting in February 2014, why was this meeting held at all? This is why so many of us asked that the meeting be canceled and rescheduled in full. Every aspect of this advisory committee meeting was given short shrift because of the decimation of the allotted time. It was disrespectful to people affected by ME/CFS and to the substantive work of the Committee. I don’t know how much it cost to hold this meeting, and I don’t know how much a cancellation might have cost. But I don’t see how anyone can claim it was worth it. The other investment that has been squandered is the time and effort of so many advocates who have attempted to assist the CFSAC leadership in improving the effectiveness of the Committee.

This meeting accomplished two things: the public airing of the lack of progress across multiple domains and an exponential increase in frustration in the advocacy community. As many people pointed out yesterday, there is a serious disconnect in communications between HHS and the advocacy community. The decision to go ahead with this meeting was a terrible capstone to the precipitous decline in the HHS-advocacy relationship. Unless, as I said in my written comments, “HHS intends to send the message to the ME/CFS community and to you, CFSAC members, that it does not care what we think, it does not want our input, and it does not intend to do anything beyond or better than what it is already doing.”

If that’s the case, mission accomplished.


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22 Responses to (Lack of) Progress Report

  1. readyforlife says:

    I’m applauding you right now. Loved what you said about us being family and we can talk crap about our family but if anyone else does we will rip heads off. I got nothing out of this meeting, I couldn’t follow it on the webinar it didn’t make any sense with trying to read what people were saying. With out sound it just frustrated me and confused me more. I hate relying on the government to help us!! I really am against any government involvement but with our disease and the health care system we have no choice. Big pharmaceuticals run everything including our government. Our Government is so corrupt and nothing ever changes. I feel so small against our government. Something needs to change.

  2. Carrie says:

    Two things I take from Dr. Lee’s comments are:

    1.) apparently she’s reading the advocate’s blogs; thus, she is aware of how the community feels about recent issues, yet she continues to act contrary to our interests, and,

    2.) on the heels of recent accusations that she intimidated committee members, she’s at it again–“Implying that IOM staff or committee members don’t have good intentions will not be helpful, and it could backfire.” How on earth could any statements by patients “backfire” on a process that is supposed to be based on scientific evidence?

    Dr. Lee, if you are reading this, please feel free to “call me out” on it. I would be happy to provide you my contact information via the owner of this blog. Constructive discussion of these issues is always welcome.

    Best regards,
    Carrie Patten

  3. Carrie says:

    Thank you, Jennie, for providing this report.

  4. Ess says:

    WELL DONE in reporting this, Jennie!! WHAT a SHAM . . . SCAM . . . SHAMEFUL ridiculous ‘meeting’.

    I have just come across this poignant statement/message in checking the on-line petition site thanking the ME/CFS Experts as quoted below:

    “Mr. Stephen Gabriel, United Kingdom

    Dec 12, 04:23

    # 1,212

    ME/ CFS research is being suppressed throughout the UK an USA too. UK research on ME/ CFS by the UK medical research council has been sealed for the next 70 years by the uk government. they only do that when they want to hide something. In 70 years this generation of ME/ CFS sufferers will be dead. Well done to those who are standing up to this global government denial of an illness that is ruining millions of lives.”

    A COLOSSAL cover-up against humankind . . . ??

  5. Pingback: Suggested reading at OccupyCFS | Speak Up About ME

  6. Michelle says:

    Nancy Lee must go. She may have good intentions and reasons for all that she has done (and I too have been horrified and frustrated with the hyperbolic, willfully inaccurate and — dare I say it? — at times catastrophizing language used by some advocates with regard to IOM), but she has executed her job with such incompetence that she has irreparably harmed the reputation of both ORWH and DHHS (as if they had much reputation to taint among ME/CFS patients to begin with!). Her ability to successfully act in the interests of ME/CFS patients, CFSAC, or even ORWH and DHHS is beyond repair at this point. She needs to be reassigned (fired?) for the good of everybody.

    Now that would be a petition I would sign.

    • Jennie Spotila says:

      This was the last straw for a lot of people. I think we’ve reached a point similar to Bill Reeves. It didn’t matter what he did or said: he had lost all credibility and support. It’s a shame that this is diverting so much energy and focus from bigger issues, but I don’t see this going away any time soon.

  7. Ess says:

    Perhaps, as evidenced in heading up the CFSAC committee in this UNtoward pattern of behaviours AGAINST the ME/CFS patient community and advocates, and turning up the volume on this as time goes on, Dr. Nancy Lee has been put in this capacity for these very reasons–to chastise and berate us for speaking up with TRUTHS and VALID CONCERNS–in ‘an effort’ to send us cringing and scuttling away.

    This displayed ‘attitude’ is coming from orders from HIGHER UP!

  8. Ecoclimber says:

    I took it as a threat. The fact that HHS will not reveal the IOM contract under FOIA is big. Under an administration of open transparency, what are they hiding? Why won’t they disclose the contents of the written contract if its nothing more then what they have disclosed so far? Why the secrecy?

    In the U.S. such an action by an official of the U.S. government should be viewed on a very serious level. It means nothing concerning Dr.Lee’s intent. It is how many patient advocates and patients within the ME/CFS community understood the comment. She is a professional representing her agency, her conduct should be professional. A public servant cannot behave in this manner. An analogy could be made of a senator berating his constituents because they are complaining for his failure to represent their interests in Congress…a no brainer. I and others took it as a threat. That is all is needed. Not only Dr. Lee should be removed from her position but an apology by HHS to the ME/CFS patient community is required. Many patients became upset and physically sick over this meeting.

    Remember HHS is part of a consortium of Federal Agencies which includes the Department of Homeland Security. If you view the history of the Occupy WS movement and given the recent revelation concerning our intelligence community, patient advocates who are legitmately exercising their free speech rights and practicing due diligence with regards to the IoM contract do not know if their actions have or will place them on DHS watchlist list after Dr. Lee’s chilling comments.

    As U.S. citizens and taxpayers, we have the right to hold the U.S. administration accountible for their actions. The last time I check, this govenment is a democracy with quarantee civil liberities but that is a whole another issue.

    I have no idea what’s in those emails referred to in her comments but I don’t want to be lumped together with them nor lumped together as a suspect group.

  9. Libby says:

    Thanks so much Jennie!

  10. Hi Jennie,

    Thanks for summarizing all this so quickly for us.

    I don’t mind having my name associated with the quote 😉

    Here is what I said: “The words of the day: “Can I have the next slide, please? Next slide? Next slide? Hello? Can anybody hear me? Can I have the next slide?”

    Humor was the only way to get through this disaster!

  11. Carol Ann says:

    It is disturbing. The bumbling meeting director, who is charge, and can’t get the simplest things in order to have a serious meeting..well I guess I should correct myself and say…what “I” think is a serious meeting. I am honored and fully behind what you Madam are doing. Bravo!

    Thank You for calling attention to the “the family” because many of us have no family. They are gone after the “long haul” of chronic, debilitating illnesses! You are our Voice. How horrible to have to sit thru that comedy, sham of errors. Well it certainly should make the next meeting interesting, so much money wasted. So sad. So impressed by your diligence and fight, for all of us.
    Hoping For Wellness,

  12. Ren says:

    I worked at a somewhat large restaurant chain many years ago – but I recall one manager directing the employees to take any customer complaint very seriously and take immediate corrective actions because, he said, most people don’t voice their dis-satisfaction and don’t offer you an opportunity to fix the problem. They just take their money elsewhere. Well, the ME community has had an “unpleasant dining experience” and now wants to take its money (allotted funding) elsewhere.

    Can you imagine if a restaurant said, “You’re gonna eat eggs. You’re gonna eat them here. And you’re gonna eat them sunny-side up. Non-compliance will be interpreted as a mental disorder, which can only be corrected with more eggs. So eat your eggs and don’t embarrass us, especially in front of the egg farmers.” :/

    • Jennie Spotila says:

      And if you are ALLERGIC to eggs, too bad! And don’t complain to management. Management doesn’t care. Nice analogy, Ren!

  13. Valerie says:

    Jennie, thank you for the summary. I did listen on the phone from Canada and watched the slides when they were available and timely which was not often. I have not much to add to the disappointing event, but the concern I have – and we would need a transcript to prove it – is that I did not interpret Nancy Lee as saying that it could backfire (as a consequence of the advocates’ actions)but I took her to say that she did not want vitriole against the intentions of IOM and suggestions from the advocates that it could backfire. This is opposed to the threatening interpretation”and it could backfire” from the vitriole. Does that make sense? We would have to listen to it to be sure. I just thought I would express that I had a different interpretation to the end of that sentence (even though none of the comments were by Dr. Lee were appropriate).
    Feel free to correct me on this if I am wrong but they carry very different meanings.

    • Jennie Spotila says:

      Valerie, I heard the comments (and it’s reflected in my notes), as saying that Nancy thinks questioning IOM participants’ motives would backfire because it would make those people less likely to see us positively. I thought she was saying that this kind of negative, personal activity would backfire because it would turn people against us.

  14. Ess says:

    When ‘someone’ is in over their head in terms of the directive / order that they have been given to ‘CONTAIN, CONTROL AND STIFLE’ the comments, concerns, observations and questions raised by pw ME/CFS and advocates–and can’t get ‘their way’ in SHUTTING US UP—this is exactly the resultant behaviour of that ANGERED ‘someone’–lashing out, AND in this case with threats, intimidation and coercion. ‘Someone’ has gone completely off the rails!

    This IS a very serious matter!! See dictionary definition below.


    the act of coercing; use of force or intimidation to obtain compliance.

    force or the power to use force in gaining compliance, as by a government or police force.

    “Remember HHS is part of a consortium of Federal Agencies which includes the Department of Homeland Security. If you view the history of the Occupy WS movement and given the recent revelation concerning our intelligence community, patient advocates who are legitmately exercising their free speech rights and practicing due diligence with regards to the IoM contract do not know if their actions have or will place them on DHS watchlist list after Dr. Lee’s chilling comments.”

    A frightening scenario . . . and potentially very realistic !!!

  15. Hermes says:

    The effects of many years of stigma and prejudice against ME and CFS on IOM panel members

    ME and CFS are illnesses which are highly stigmatised in the medical community in the USA and internationally. There is a psychiatric stigma attached to the illness. The press, the media, the medical newsletters, some medical journals and medical based social networks and clubs and circles have fuelled this stigma. Many doctors, including independent doctors have been indoctrinated to believe that ME (CFS) is a psychiatric or psychological illness. All of the non experts on the panel have been affected by this stigma and prejudice against ME and CFS patients. Thus we are outnumbered 8 to 7 on the panel. The actual number in the end may be 9 to 6 as at least 1 member can be expected to waver or become vulnerable to pressure or manipulation.

    While conflicts of interest raise concerns about the integrity of the IOM and NIH, it is the existing stigma and prejudice around ME and CFS which has already influenced IOM panel members which is most threatening. And this will influence their mindsets, their thinking, and the pathway they will choose in research analysis. Its highly probable that all non experts may use their time on the panel to research those areas which reinforce their prejudices and stigma. Also they may even use it as fallback position if the other research areas are percieved to be unconvincing.

    The IOM must move to identify existing prejudices, bias and stigma against ME and CFS among all panel members, with particular attention paid to non experts on the panel.

    All closed and secret meetings of the panel must be made public in order to comply with law. Transparency, accountability and fair procedure are still part of Federal laws.

    The IOM should be asked to replace all non experts with the following experts – Dr. Dan Peterson, Dr. Paul Cheney, Dr. Derek Enlander, Dr. Chia, Dr. Conley, Dr. Sarah Myhill, Dr. De Meirleir. This would enable a thorough, honest, unbiased, objective, independent study to be conducted at the IOM.

  16. Justin Reilly says:

    Regarding complaints about Nancy Lee to the govt and media:

    I think all three current problems with her- threats of punishment for free speech of (1) CFSAC members earlier and (2) advocates at this meeting and (3) the full on bungling of the meeting should be brought up together because (a) the threats to CFSAC members for speech is very serious (as we all agree) and (b) these reporting of these incidents all lend credibility to each other and make the whole greater than the sum of the parts because it shows a consistent PATTERN of ACTIVITY or modus operandi.

    The first two were clearly attempts to silence political speech with threats and the last, the bungling of the meeting can be seen as being another attempt to stifle our speech by shortening and messing up the meeting and making it too burdensome for sick people to comment (as well as of course, showing either maliciousness or incompetence and violation of the requirements to accommodate the disabled).

    I’ll note also that the free speech rights of CFSAC members and ‘meeting attendees’ were abridged too, because freedom of speech includes the right to HEAR a message one wants to.

    Showing a consistent pattern of activity is very persuasive that these events did actually happen as we describe them and that they are very likely to continue in the future, which possibility must be cut off by the government.

    We all know free speech is important, but let me emphasize again that these consistent attempts by a government agent to stifle the political speech (of disabled people no less) is very serious since the Supreme Court has held freedom of political speech to be the BEDROCK of our Constitution.

    Framing this all as attempt to punish political speech should get a much bigger response from any politician or even any agency head, both of which are often lawyers. Red flags and alarm bells will go off in their heads when we say she has been pursuing a pattern of blatant attempts to silent political speech.

    This should garner a different response from politicians and head bureaucrats than our usual allegations which they brush off because (1) they think we can’t get media or other attention, (2) they think we’re too sick to effectively organize against them, and (3) agencies and agency employees are given a lot of discretion especially when technical or scientific expertise is in question; but agents have zero discretion to stifle speech. This is black and white.

  17. Ess says:

    You nailed it, Justin!!!!!

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