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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. Mark

    Mark Acting CEO

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    Well said Sing. I think this is perhaps the main issue I'd want to emphasise in all of this: for everyone to realise that many of the people they are watching who may seem to them to be 'softer' or 'less radical' - or even 'obstructive' - are actually under incredible pressures, working face to face daily at the front lines with those we might see as our real 'enemies' - and putting extra pressure on them or undermining them really doesn't help us at all. The agencies do need to be questioned rigorously, through those agency reps, but the individuals themselves deserve our respect, and that can sometimes become a subtle distinction that can get lost. We need to imagine the context for those people. This is where we need a bit of imagination to try to understand what's actually going on here in the bigger picture, and we need to understand who our friends are. I think that if we can all realise and understand the situation that an individual like Susan Maier is in, and really take on board what she said in her response...I think if we all think about that seriously we can start to see that in a very important sense we are all on the same side here. It doesn't mean we all agree on everything, and we still have to work through the difficult issues and get our points across, but we really have to start from the appreciation that the people who are here in front of us (ie at CFSAC) are the ones that actually do care. Everyone should start from that premise when working through the more complicated and difficult arguments and I think that CFSAC does so to a very large extent.

    There are some much more cynical attitudes out there, some really horrible ignorance and uncaring attitudes in the workplace I have no doubt (imagine the context of the CDC reps who work day to day in a culture that in the past featured those despicable cartoons about CFS posted in their workplace) and perhaps we should reserve our angers and frustrations for the ones out of sight who are putting these kinds of pressures on those who try to support us. It must be horrible for somebody like Susan Maier when she gets pressure from both sides. I think we do better if we try to support and work with those people who are actually trying to help us. We need to recognise it when there are people who are actually on our side but who just happen to work within a radically different context. That kind of dialogue is incredibly hard work actually, for all concerned, and again: I respect all those who persevere with it.
  2. akrasia

    akrasia Senior Member

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    The main thing is that Eileen Holderman, Maryanne Fletcher, and a third person were threatened with expulsion from the CFSAC.
    usedtobeperkytina likes this.
  3. SOC

    SOC Moderator and Senior Member

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    Were these threats the action of Dr Lee (for whom I have very little respect) or that of higher or wider authorities? In other words, was it supported by Dr Lee's supervisors or other members of the committee? Or was it a personal snit?
    Sing likes this.
  4. Nielk

    Nielk

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    Any type of threat, no matter where it came from, is unacceptable. If there was a problem, it should just have been discusses as adults. The fact that Aileen Holderman and Mary Ann Fletcher felt intimidated, is not okay with me.
  5. Sing

    Sing Senior Member

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    Thank you, Mark, for expressing all this. You have provided now a background of understanding for me, and us, I hope...
  6. SOC

    SOC Moderator and Senior Member

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    Absolutely!

    Not okay with me, either, in any way. It's completely inexcusable, in my opinion.

    The issue, for me, is who we hold accountable for this egregious behavior -- a specific individual or an organization. Threats need to be addressed, but we should address them appropriately and be careful not to insist on accountability from those who are not responsible.
    Nielk likes this.
  7. Nielk

    Nielk

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    I totally agree with you SOC. I wonder if there is a way to find out what really transpired. I feel like I owe support to Holderman and Fletcher but, I'm not sure how to go about it.
    justinreilly likes this.
  8. SpecialK82

    SpecialK82 Senior Member

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    I missed big parts of the meeting and am shocked to be reading this now! I am sure we will get more of the story from the insiders soon.

    Thank you Mark for your compassionate words about the stress that the committee members must endure on a day-to-day basis. I whole-heartedly agree. I think the people on this committee basically do understand us and do care about us. I many times don't think they are being effective, but I do think positive encouragement from us whenever they do something well should be a top priority for all of us as patient advocates. We need to ask the tough questions and let them know that we aren't going away, but at the same time we should show them our respect and appreciation.

    I do not understand the basis of the threat to Susan Maier, but I hope to the bottom of my being that no threats have come from patients! Not only is it illegal and reprehensible but nothing could be more damaging to our cause.
    Sasha likes this.
  9. Sasha

    Sasha Fine, thank you

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    I hadn't been following the meeting closely in the lead-up to what happened and didn't understand what was going on but it was very upsetting to see people at the meeting so distressed. Watching from the sidelines as we are it's hard to know what to do to support them. I hope they all got at least some of the support they needed from those around them as soon as the meeting ended.
    Sing likes this.
  10. frenchtulip

    frenchtulip Senior Member

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    I need more information before I can begin to understand what was going on yesterday. Certainly, no one should be intimidated. Hopefully, we will get to the bottom of it all. For me, there were two useful comments that emerged. Dr. Maier's comments that she is disrespected when she mentions that she works with CFSAC. And, Dr.Friedman's reminder that he was threatened professionally at his place of employment for his involvement with ME/CFS. He told about his experiences at the medical school in NJ at one of the CFSAC meetings. If I am remembering correctly, Dr. Ben Natelson was the other physician who ran into problems at the same medical school system for his work with ME/CFS. The comments of both Dr. M. and Dr. F. were stark reminders that there are those who do not understand or refuse to understand that ME/CFS is a legitimate and serious illness. I think Dr. F. brought up a great point about the difficulty of getting grant applications approved at NIH because of prejudice against ME/CFS. The video and minutes of the meeting will be most helpful. I cannot remember whether Dr. F. mentioned that those evaluating the grant proposals may have very little knowledge about ME/CFS, but that has always been a concern for me.
    justinreilly, SOC, Roy S and 3 others like this.
  11. Mark

    Mark Acting CEO

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    To be accurate, the key word to add to that sentence would be 'allegedly'...especially pertinent since there has already been mention that lawyers have been spoken to...

    I think we should be very cautious in a situation like this before we jump to any conclusions. We don't know what was said, or by whom, or why. All we have is what Holderman and Fletcher said and we haven't heard the context or the other side of that conversation. Eileen was clearly very upset, she said she was afraid to speak out, felt bullied, thought she was being 'shut down' and she and others were being shut out, and she said that she and 2 other committee members had been called (by Nancy Lee, we think, but don't know) and were (according to my notes) 'under threat of expulsion from CFSAC'. Mary-Ann Fletcher said she was one of the three who were called. We don't know when this happened. Crucially, we don't know what reasons lay behind what was said to these three committee members.

    Holderman was clearly very passionate about representing the views of patients during this meeting and I'm sure we are all very grateful to her for that, and appreciate many of the things she said. Similarly Fletcher said a lot of really good things and asked a lot of very pertinent questions. It's natural that we see them as being 'on our side' and want to support them, and that's right, I'm not saying we shouldn't do that. However, I do think it is better for everyone concerned if we do our best to try to take some of the heat out of the situation right now, and don't just all pile in and get involved in a fight we don't understand.

    We actually don't know whether the 'threats' of expulsion were directly related to the issue around the NIH 'hijack' (as Holderman called it) of the committee's recommendation of a stakeholders workshop to agree a consensus case definition.

    Here's an example (paraphrased from my own experience in completely different, non-ME/CFS contexts) of the sort of thing that might (for all we know) have happened. Those 'threats' (hypothetically) could have arisen in the context of an argument about the agenda of the committee meeting, in which the committee members concerned challenged the authority of the chair. I can easily imagine a conversation like this: "Well I'm going to talk about it anyway" - "Well I'm sorry but it's not on the agenda and we have other things we have to discuss today" - "Well I'm going to say it anyway" - "Well if you do you'll be out of order" - "Well I will do it" - "Well if you did that you would be breaching procedure and risking expulsion from the committee". That could be construed as a threat.

    But that's all speculation, and so far that's all we have really. What is really important here is the substance of that issue around the NIH 'hijack' of the recommendation, and regrettably the committee doesn't seem to have resolved that discussion. So it's better, I think, if we focus on thinking about what the committee was confronting, which was this recommendation for a stakeholder's workshop on case definition. Here is that recommendation, which was sent to the Assistant Secretary for Health:


    The response:


    Susan Maier, in answer to questions, did explain that the NIH study was not a case definition workshop (which the committee had requested), and she also mentioned something to the effect that the process towards establishing that workshop had already been underway before the committee had made its recommendation. The process that the NIH is going through is a standard methodology they have in place which is appropriate for reviewing evidence about case definitions; as I understand it, the process will produce evidence about where the gaps are in the case definitions and may also illuminate which treatments are most effective for particular symptoms or symptom clusters, so it will be a step towards showing evidence as to what work needs to be done on case definitions, but it's not the same thing as what the committee wants to see now (which is basically the same thing that advocates and orgs want to see).

    Now: I may misunderstand, but it really does seem to me from the above that it's a red herring to complain that the NIH's workshop is not the workshop that the committee is asking for in its recommendation. The NIH's workshop sounds to me like a very good thing indeed, in itself, and neither Susan Maier nor the office of the secretary have pretended that it is a complete answer to the question posed in the committee's recommendation. What they did say was:

    Since that response was given in or around January of this year (2013), in answer to the Oct 2012 CFSAC recommendation, it would have been appropriate for the committee to get an update on that separate effort that is being 'actively pursued', and perhaps table a further recommendation, or re-iterate the previous one, saying that this should be a high priority and making clear some of the details about what form it should/must take.

    As far as I could tell, the committee failed to do that because it got bogged down in arguing about the NIH workshop not being what it asked for, and I think a large part of the reason for that was lack of time on the agenda. It seems to me that this is the biggest thing that the committee needs to work on: careful and detailed follow-up on the responses to its recommendations, re-iteration of recommendations where responses are inadequate, detailed examination of the text of recommendations and responses, and perhaps most importantly a good structure for doing that as a matter of routine during its meetings. Useful though the information sessions are (such as the medical insurance presentation and the discussion about clinical practice) I would prefer to see the committee focus the vast majority of its time on substantive and constructive discussions about the recommendations and the responses to them - since that is the primary if not sole purpose of the committee.
    jspotila, Sing and Valentijn like this.
  12. Nielk

    Nielk

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    It is no news that clinicians, researchers and anybody involved with ME/CFS seem to be vulnerable to being mishandled. This is due to the bias, misconception and ignorance. This is more the reason to work harder at changing the name away from "fatigue" and "syndrome". It is also more the reason why we need credible diagnostic criteria that truly describe the level of seriousness of this illness. I'm afraid that until these two are accomplished we will continue to see the disrespect of ignorant people out there.
    There is a tremendous amount of frustration that I share regarding these actions. We have been pleading for change year after year and how far have we gotten? I appreciate everyone who serves on the CFSAC committee and admire their willingness to hear us out and to help us but, I feel like we are just going around in circles. I do feel that they are getting the seriousness of the illness now but, I am not sure how much power they actually have to affect any change for us? It seems like there are a lot of recommendations out there with some of them being marked as high priority but, what will it take for these recommendations to come into effect? It is very hard, as a patient who has been ill for so long, and see how the actions there are so snail paced and are we even getting anywhere?
    justinreilly, Kati and Valentijn like this.
  13. JayS

    JayS

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    When I hear the line about how if you're going to complain about low funding...then encourage researchers to submit applications...when we know most of them get turned down...by panels, as I think it was Pat Fero reported, comprised of a large number of dentists, making decisions about a condition they knew nothing about...I tend to side with whoever they're at odds with.

    Susan Maier wasn't threatened, but she spoke with a barely restrained fury, and looks that could kill. If she's taking heat or ridicule within NIH for serving on that committee...then don't.
    justinreilly likes this.
  14. Kati

    Kati Patient in training

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    Mark As far as I remember, Eileen has been called for disrupting process. However she felt it was important to report on progress of her subcommittee and felt she was not heard.

    This precipitated her to express fear and anxiety about how she has been treated and how she was coerced into approving false information in regards to past recommendations to be ear marked as "achieved" when they were not. She reminded people that she took an oath and that she was asked to deviate from that.

    This fact that 3 members of CFSAC that were intimidated into taking position when they felt it was wrong, is critical information about the functioning, or perhaps dysfunctioning of CFSAC.

    Considering the terrible socio-political history of ME and CFS, this piece of information is critical to patients, and how
    CFSAC, or HHS deals with it- whether it will be investigated or simply burried- will have consequences. At least I hope.
    justinreilly likes this.
  15. Mark

    Mark Acting CEO

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    I didn't hear anything to the effect that the 'threats' issue was that she had been called for disrupting process, although it's true she was off-topic to the meeting's agenda item when she raised this issue about 3 people being threatened with expulsion and she disputed with the chair when he told her to wait. The chair then said she was 'out of order' which was technically quite true because she was disputing with the chair at the time. That issue of disrupting process may or may not have been connected to the issue of the threat of expulsion. I think the report on progress of her subcommittee was a separate one, but clearly there is a longstanding issue there too - underneath what we see on the surface it seems clear that Eileen feels she hasn't had the opportunity within CFSAC meetings to say what she wants to say, and that seems to go back quite a long time. Frustrations with the functioning of the committee were clearly surfacing here, and I do hope that the committee members manage to work all this out.

    I seem to have missed that (or at least, I didn't hear it quite like that); I was frantically typing away and trying to get down as much as I could of what she said so I may have missed something. Coercion into approving false information re: past recommendations...I didn't hear that and that sounds very surprising if so. Surely she's free to register her vote against any motion that is put to the committee? Surely there's no means to expel her for voting against something?

    I'm really not prepared to call that a 'fact' yet. I didn't even hear Eileen say that, and even if I did, the only fact I would have possession of is the fact that she said it. I would really need to know more about what happened before I can take any position on it.


    I would be very surprised if there really has been any nefarious intent or dealings by the chair and deputy (Marshall and Lee), but I agree that, after what has happened, the community needs more information about all this and it shouldn't just be buried. I hope the 3 committee members will tell their side of this and there will be a response - or even better if they can work it out privately and make up so that we can all move on with substantive business.

    I'd still suggest that it's best to focus on the substantive issues - the recommendations themselves - because regardless of whether committee members were coerced into accepting them, we can see for ourselves on the CFSAC website what the original recommendations were, and what the priority recommendations now are, we can see what has been registered as 'completed' and assess for ourselves whether they really were completed, and we can campaign for any important recommendations that have been dropped during this process to be re-instated. It really is terribly important that the community does all that and gets engaged with the details of these recommendations.

    There would only be a problem with us doing that if the information we have in front of us about the recommendations is false. Where you say that Eileen said she was "coerced into approving false information in regards to past recommendations to be ear marked as "achieved" when they were not", I am assuming that means some things may have been marked 'achieved' or 'completed' when it's questionable whether they really have been completed (and such questions can often be nuanced)...and perhaps that Eileen was pressured into voting to approve that list. I haven't seen anything to suggest that the content of the recommendations or responses has been manipulated, and only if that were true would there be any difficulty in the public determining the truth for themselves. If something has been marked as "achieved" and it has not been "achieved", we can all see that from the public record, we can go through that in discussion here, we can highlight those issues, and we can campaign on that. And if that is the case - which would not surprise me - then I think we absolutely should do that, and it also would not surprise me at all if, having done so, the committee then accepted those points and amended the recommendations.

    I think it is time for the patient community to get to work on these details and get more engaged in the detail of this process, and I'm very much hoping that PR will be able to provide a route to do that. When this new list of priority recommendations go up on the CFSAC website, it's critical to then go through the original list and examine what, if anything, has got lost along the way. I can't think of a more important task for US advocates. I am sure Jennie will be leading on that, but I hope she will have plenty of help. I also hope there will be an active thread on PR where we all look at all of those recommendations in some detail, including drafting supporting material for the recommendations which we pass on to the committee. I think we have a real opportunity to get engaged in all this and I think it would be best for everyone if we focus primarily on the detail of the recommendations. I do understand the importance of getting a satisfactory resolution on this troubling question about coercion or threats to committee members, but what matters most here to the patient community at large - that is to say, a million or more sick people - is the detail of those recommendations and the committee's ability to function effectively in campaigning for them to be achieved.
  16. Ember

    Ember Senior Member

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    Eileen Holderman had to fight for a few minutes of the CFSAC meeting's time while another patient's testimony was being graciously accommodated. What Eileen claimed seemed obvious to me, that her appropriate behaviour was being challenged because of a difference of opinion. She refused to accept that a CFSAC recommendation had been achieved, and with my life on the line, I happen to agree with her.

    You can measure any group by the way that it handles legitimate dissent.
    justinreilly and Kati like this.
  17. Hope123

    Hope123 Senior Member

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    Excellent comment.

    I think what is captured on the videocast, which anyone can see once it's up on the CFSAC DHHS website, is enough to write to CFSAC about. What goes on behind the scenes, how procedures work on CFSAC, what actually transpired.........these are all good things to explore to find out what the community's overall actions should be but good luck finding that out given Federal confidentiality laws. What I saw was intimidation and shutting down of the only patient representative on CFSAC by the Chair Dr. Marshall and this is not the first time I've seen it -- review past videos if you want. So I was not surprised to hear what Eileen said later. The Chair is suppose to be professional and even under time pressure is suppose to treat everyone equally but there are a few people he seems to pick on more than others over and over again.....Eileen and perhaps Dr. Fletcher who is more soft-spoken. That has to stop regardless of what went on behind the scenes. Few patients will want to serve on CFSAC if they feel that that is how they and their suggestions are going to be treated. Also, compare that to past meetings of CFSAC over the past few years; it's not the same with prior Chairs.




    I have experiences in my life when I or people near me have been bullied in the same manner. You know what resolved it? Having teachers (at the post-graduate level, not kindergarten), colleagues, and passersby point out the behavior to the person.

    No matter what pressures CFSAC members are under, that is no excuse to take it out on others, especially in front of a national/ international audience.
    If the patient community will not stand up for its sole member on CFSAC then we are not worthy of having a patient rep on the committee.
    justinreilly, Roy S and Nielk like this.
  18. SOC

    SOC Moderator and Senior Member

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    The question that arose for me last year after the meeting is still in place after this one -- Does this committee, in fact, actually accomplish anything for patients? Patients, advocates, and committee members put in a lot of effort preparing for and during the CFSAC meeting, but I'm not seeing any substantive results for all that effort.

    The CFSAC is looking more and more to me to be a placebo committee, despite the efforts of many of the committee members. We have a place to express our concerns, but not a place to get our concerns addressed. It's like yelling into a well -- we make noise, but nobody in a position to do anything is listening.

    Perhaps we need to take the energy we focus on the CFSAC and put it into advocacy activities that are more efficient uses of our limited energy.

    It could very well be that I am missing quite a bit, especially this year as I didn't have the opportunity to listen to the meeting, so feel free to correct my impression that the CFSAC is getting nothing productive done by the parent organizations involved. :)
  19. Mark

    Mark Acting CEO

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    Sometimes, if you choose to take sides, you are deciding to fuel conflict which may very well be counter-productive to your aims. You don't always have to take sides, and if you do so when it's not appropriate, you run a considerable risk of friendly fire. Do you have somebody suitable in mind within the NIH who you think would do a better job than Susan Maier? Do you think that, if she resigned, her replacement would be more, or less helpful to us? I think those are very important questions for anybody who cares about achieving as much as is possible. I like to be confident as to whether what I'm asking for will make things better, or worse.

    Susan Maier's comments were passionately expressed: she was asked what factors, in her experience, make the most difference to the amount of funding allocated to various different diseases. Her answer - and she's in a good position to know - was strong and clear: she said that - in general across all budgets - the basic way it works is this: if lots of excellent applications are received, exceeding the allocated pot of funding, then the next time round that pot will be increased. That sounds very believable indeed to me, and I do believe that she was honestly and straightforwardly giving her opinion there: in fact, I believe that's true and it's a very valuable insight.

    Now: two researchers then challenged this and pointed out that excellent applications by them (and given who they were, I don't doubt at all that they were excellent) had been turned down by NIH in the past (and, indeed, in the latest round) with the cited reasons for rejection being questionable and political - in particular it seems that some of the reviewers (as with the dentists example) did the same kind of thing we're familiar with hearing about in the UK: there are people on these panels who are basically giving excellent biomedical ME/CFS research applications 0/10 because (eg) they use the CCC not Fukuda and they claim that CCC is not a recognised criteria and it's therefore a bad application.

    I have no problem believing that both perspectives (Maier's and the researchers) are accurate. That is: yes, the way to get more funding is to get more grant proposals submitted and funded, and there aren't enough being submitted, and that's crucial to getting more funding - but at the same time, yes, one reason why a lot of people don't submit is that they have found that they don't get funded because the reviewers have a political perspective on ME/CFS that is antagonistic towards research using the CCC.

    That discussion was just starting to get interesting, at that point, but unfortunately it didn't move on from there; I'd have liked to then hear questioning of Maier regarding the selection of those who approve/disapprove grants and what the issues might be there - and how that situation might be changed. And a critical question to ask would be: does Maier have the power to remove those dissenting grant reviewers? Because it's only her fault that this is happening if she does...

    But overall I didn't see anything to make me doubt that Susan Maier is working hard, in good faith, to try to help us. There are road blocks within all the agencies; there are political realities that people who work there have to deal with. I don't think it would be fair or appropriate - or helpful to us - to scapegoat Maier for those issues, and I don't know, but I suspect, that it would be very much shooting ourselves in the foot if people try to do so because I think it's very likely she's as good a resource as we could have within the NIH to actually solve these problems.
  20. Ember

    Ember Senior Member

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    If you check the past minutes, I believe that you'll find that we've had that discussion before.

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