Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 19, 2013.

  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Say the following happens and certain goals are achieved (which it could well happen with those priorities).. what good has it truely done for us

  2. Mark

    Mark Former CEO

    Sofa, UK
    I have to say, Sparrow, that my initial reaction to this news was the same as yours: I had just the same concerns, and I was unsure as to whether this was the right move, but at the same time I could see that there was something very wrong here. I put just the points you've mentioned to Jennie and I discussed the issue with her and a few other people in the US. I'm now quite convinced it was the right thing to do, and without wishing to argue with you when you've said you don't want to, I'd like to explain why.

    I'm from the UK, so I'm an outside observer and I don't have the political context to understand the procedural and legal issues involved here, and perhaps some might think it's none of my business. Nevertheless, I've been very interested in CFSAC for a few years now. One of my first experiences when I joined the Phoenix Rising forums was to watch a live video feed of a CFSAC meeting, while chatting about it on a forum thread, and coming from the UK I found the whole concept of this committee extraordinary. Here was a state advisory committee openly streaming its proceedings live on the internet, welcoming input from the public, genuinely open to input from patients and stakeholders, and behaving in an intelligent, constructive and mature fashion - I couldn't quite believe what I was seeing!

    It might sound strange or naive, but that experience actually transformed my understanding of the USA. I felt warmly welcomed by members from the US, almost none of whom felt in the slightest that it was 'none of my business', and I had the sense that I was watching something that was at the very least an attempt at something genuinely democratic. Ever since then I have followed CFSAC with great interest, and I've been impressed by the efforts of the committee and by the understanding and concern of the committee members. So I've developed a kind of affection for CFSAC, and a conviction that it at the very least trying to help ME/CFS patients. Hence my instinctive reaction to the news was just the same as Sparrow's: I felt protective of it.

    However, when I talk to my friends in the US, what they tell me is that the very purpose and concept of these committees is to provide for public input and visibility of state processes. They tell me that it is a fundamental breach of the charter and the act for a committee to submit recommendations privately via a sub-committee without publicising them and without providing the publicly visible full committee with knowledge, input or approval of those recommendations. And from what I understand, this is exactly what has happened here.

    To remind ourselves what seems to have happened here: a private sub-committee produced a set of recommendations, failed to get them approved by the full committee, submitted them to the secretary, and then failed to even publicise the existence of these recommendations for a full year! Again I'm reliant on my friends from the US when they tell me that this is fundamentally not how the committee may act.

    Now, it may be the case the the sub-committee felt that these recommendations were more realistic, more likely to be accepted and acted upon, than the rest of the recommendations made by the full committee over the years. And they may have been right about that. They may even (and there's no available evidence of this either way) have deliberately decided to submit these recommendations secretly, in violation of CFSAC's Charter and of the federal act, with the best of intentions, out of a desire to actually achieve something.

    But even if all of this is true, it simply cannot be allowed to stand. This committee, as I understand it, is the best and only official route for patients and patient groups to have both a say in the recommendations made to the relevant state authorities, and some visibility of what is being recommended on their behalf. It has clear rules on how it may conduct its business and these appear to have been disregarded in a way that removed public scrutiny from the equation. I think most people would agree that the concept of a "benign dictator" isn't the model we want in our political life, and if you believe in democracy then I think you have to trust that it is the right thing to do to object when democratic instruments are bypassed.

    Phoenix Rising and several other ME/CFS organizations are currently applying for the right to have a non-voting representative on this committee. I think that's a great step forward and an opportunity for the patient community to have a greater say, to tell government what the community wants to happen, to register its concerns. But if sub-committees are going to meet privately and make secret recommendations on behalf of the committee without consulting it, what on earth is the point of non-profits spending donated money to fly non-voting representatives to Washington to take part in the committee if the CFSAC recommendations to government health bodies - its primary outputs - are going to be formulated without the committee even knowing what those recommendations are?

    No, if CFSAC is to be of use to us, it surely has to follow its own charter. If it is to be an effective body then it has to conduct itself properly. I believe that Jennie is quite right to report this, and it is in all our interests to draw a clear line here and say: if we are to put up our representatives to this body, then it must be a body that is transparent and correct in its proceedings and if it is not then we will hold it to account.

    I know that there is a widespread disillusionment amongst the patient community about CFSAC right now. Great hopes have turned to disappointment in the last few years. The community is aware that while CFSAC has made many excellent recommendations, all of its advice has been consistently ignored, and many have started to wonder whether there's any point in this whole exercise at all. But I don't think this is the time to lose heart; I think this is the time to get even more involved and to back up the committee with mass campaigns and advocacy to support and add to the pressure it can exert.

    Perhaps there is a lack of self-confidence going on here, and the same is true across the world when you push and push in every way you can imagine and nothing seems to happen. But I happened to be in Berlin when the wall came down: it was sudden and unexpected after years and years of pressure. When I arrived, the wall was there; by the end of the week, it had gone! Nobody saw that coming, and the week before I'm sure there were plenty of people on the other side of that wall who were completely disillusioned and thought all their efforts over the years had been in vain. When there is pressure, even the strongest walls eventually come down - and here's how: council/walls come tumbling down_20132778.html

    So I think maybe we should believe in ourselves a bit more, believe in democracy, and not wait for well-meaning private sub-committees to push through changes on our behalf that may not be what we actually want. I do get that CFSAC has to be pragmatic. It has to recommend realistic and sensible measures, things that might actually happen. The representatives on that committee each have an expert understanding of what is and what is not possible in their different departments, what routes might work and what might not, and it's very important to listen patiently to what they say and work out solutions together with them. I actually believe that the patient representatives can and will do that and they will help the committee to achieve its goals; I am convinced that the ME/CFS community in the US is currently maturing at a rapid rate in its ability to advocate effectively.

    I also believe that the expertise of the Phoenix Rising community could have a vital role to play on that committee. If we are able to pool our knowledge and relay it effectively to the committee, we could be a significant help to the committee by bringing hundreds of the best minds in the ME/CFS world to bear on the challenges it faces. And whether Phoenix Rising is chosen to have a seat this time round or not, US ME/CFS non-profits will work together to back up what we campaign for with popular campaigns, and we will play our part in that effort.

    I think things are changing for the better in the world of US ME/CFS advocacy right now. Non-profits are coming together and organizing to make sure that our voice is united and make sure that it is heard. Jennie's insistence that CFSAC complies with its own charter and with the federal law is right, because that compliance is necessary if we are to have any chance of our voice being heard.

    Maybe nothing to do with me, but that's what I think. :)
  3. Jody

    Jody Senior Member

    Beautiful post, Mark.
  4. jspotila

    jspotila Senior Member

    Just to clarify, "Fund more research" is my summary of that recommendation. The actual text they used was as follows:
    The problem is that this recommendation is different from what was originally passed by the Committee. I go into this in detail in this blog post, but the important thing to point out is the change to the main part of the recommendation. The original recommendation passed in May 2011 has another sentence after the "areas to be examined." Specifically, the recommendation said
    That sentence addresses your concern, taniaaust1. In my opinion, this sentence changes the whole recommendation because it requires that funding match the magnitude of the problem. But in compiling the High Priority list, someone (subcommittee? chairman? DFO? we just don't know) decided to delete that sentence. THIS is why I want this work to be done in public. We would know who wanted that sentence deleted and why. The committee members could debate the issue. We could have commented on its importance. But the behind-closed-doors approach to choosing priorities deprived us of the opportunity to do so. And I believe that is wrong.
    taniaaust1, Valentijn and snowathlete like this.
  5. jspotila

    jspotila Senior Member

    There is an update!!!! Public Citizen received a letter from Dr. Nancy Lee, DFO of the CFSAC. She said that the High Priority list will be discussed at the spring 2013 meeting of the CFSAC. This means that all of us will have the opportunity, through public comment, to offer our thoughts on what the priorities should be. Read the letter and other information over on my blog:
    Valentijn likes this.

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