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What Should Phoenix Rising Tell the IOM Committee?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Mark, Jan 8, 2014.

  1. Firestormm

    Firestormm Guest

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    I think I must have missed where Phoenix Rising polled it's members and determined a Phoenix Rising position statement on the IOM contract.

    If individuals are opposed to it then say so by all means, but let's not start saying 'we' are all opposed to it, when not everyone is aware of what has been taking place.

    I think as a source of information for patients concerns - generally - we might do no better than refer the panel to the FDA Voice of the Patient (if that was it's name - I forget).

    The CCC is all ready a document that they said they will review - but I would like to see something said along similar lines to Tania above - as I feel the CCC is probably the most reasonable definition available - BUT - for ME/CFS i.e. as a replacement for Fukuda and CFS.

    I would like to say that I see no reason given the current state of knowledge, why we need a different and broader clinical criteria than a research one. So for me - it is CCC for clinical AND for research (although for research I suspect they will need continue to also use Fukuda but along with CCC).

    I would also like to see a change of name across the board for all who meet the CCC criteria - to Myalgic Encephalopathy - I would like this review to conclude that CFS should be dropped.

    I don't regard CF to be relevant in any way to anyone who meets the CCC and if they can't meet the CCC well then I am sorry but they don't have the disease - at least as far as can be said given the current state of knowledge.

    What I think I need to come up with - we need to come up with - is specific examples of things to cite as sources of evidence and I am not sure that anything really has been published that supports a name-change other than to Myalgic Encephalomyelitis which was opposed in previous reviews.

    Of course it might not be this time round - might be worth trying again - but I think Encephalopathy is a worthwhile compromise that might stand a better chance of seeing the removal of CFS.

    I think some greater recognition of the severities is in order and the different levels of ability to function, impact of disability, would be worth a mention - but again I am confused by the question to which we are being asked to reply.

    These are of course my views - if I can find and have time to find any specific sources and can add more things that I would like to see presented I'll add another comment or two.
     
    Roseblossom likes this.
  2. taniaaust1

    taniaaust1

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    as slayadragon pointed out. The whole IOM thing is going to be so flawed. Due to studies not being done on the very sick ME patients. .. with a quarter of those with ME bedridden and housebound (or is the statistic for ME there more?). These arent usually included in any studies.

    This is why going by studies and not by experts who specialise in this disease is so so bad!!

    Them putting focus on any one symptom I wont like...even if it was a focus on weakness or pain. ME is a complex of symptoms all coming together. I hate how most of my ME/CFS symptoms are ignored as they dont make "their" CDC list when doctors who know nothing about ME think I have CFS. Where is dysautonomia on the symptom list? (one study showed that almost all of us how it and this is measurable)

    I even had one doctor try to insist he treat me for muscle pain cause its supposed to be a symptom,.when I dont tend to even get it much (well not anymore, used to severely)

    If IOM wants to get things right they need to include testable symptoms we have, things which can be shown on tests (so we can all get away from that psych bullshit we currently often find ourselves under).
     
    Last edited: Jan 9, 2014
  3. taniaaust1

    taniaaust1

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    I think I'd be scared to say I want this IOM group to sort out its name. I just dont trust them to do that. I dont want a crappy name like multi symptom illness put onto me. I'd like this illness to a have a PROPER NAME and cant trust that they'd give ME the ME name.. (or maybe even worst they may not separate ME and CFS and end up calling it all just ME.. now that would be an even more nightmare for us).

    Anyway..by saying that we want them to sort a name out.. we are risking more trouble esp if they decided to call "CFS" ME too and group it in one lot.
     
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  4. taniaaust1

    taniaaust1

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    I just started a new petition against non-experts defining (redefining) disease re what is going on with IOM. Please sign if you agree
    http://www.thepetitionsite.com/799/278/645/stop-non-experts-from-redefining-diseases/

    and while you are at it.. would you mind signing the petition I currently got going on for myself (re my states disability orgs neglect of me and of me not being able to get to the medical appointments I need) http://www.thepetitionsite.com/802/...bled-patients-to-needed-medical-appointments/
    thanks
     
  5. Wally

    Wally Senior Member

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    @Mark, I asked the following question "@Mark - What specifically did the IOM ask PR to present at this meeting?"

    In re-reading the information you posted in the first post in this thread, I realized that you may have already answered my question. Is this what the IOM has asked the PR Forum to speak about?
    When I read the "quoted" sentence above, I thought this was how you were trying to frame a response to this invitation to speak, but now re-reading your post and Kina's comment I may have misinterpreted what you were saying.

    Can you confirm that the sentence quoted above was what the IOM asked PR to make a presentation about? Were any additional instructions or comments provided by the IOM regarding what PR's presentation should or should not contain?

    Wally
     
  6. akrasia

    akrasia Senior Member

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    @Mark
    You covered the terrain very well, and even embodied in the last couple of paragraphs the problem confronting patients of participating in something you deplore.

    It's like the joke, "The food in this restaurant stinks and, worse, the portions are too small."

    I think the IOM project is not so much to bury us but to manage a policy problem that for whatever reason has taken on some importance for them, enough importance that they found a million to finance it.

    It would be a good thing if someone spoke clearly about the fact that so many of us have no confidence in government initiatives regarding m.e., that whatever remarks are delivered in PR's name underline the dismay and fury at how the IOM was organized, the cynicism with which patients were ostensibly "included" in the process, and the confirmation it provided that the concern in all of this is just to rationalize a failed policy. In spite of contending with cognitive difficulties, we still possess a keen sense of ongoing, easily proven, bad faith on the part of the DHHS.
     
    Last edited: Jan 9, 2014
    beaker likes this.
  7. Wally

    Wally Senior Member

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    I think Firestormm makes a very good point. The use of the words "we" are often thrown around very loosely by some MECFS advocates.

    When the MECFS "experts" spoke to the HHS about the IOM Contract and the CCC Definition it was very clear who was speaking. When a follow up letter was sent by a group of patients/advocates in support of the MECFS experts letter it was very clear who these patients/advocates were.

    In two petitions, one objecting to the HHS ME/CFS Contract with the IOM (petition started by Patricia Carter*) and one requesting the HHS change the definition and name of the illness (petition started by Mary Dimmock**) it was very clear who the individuals were who signed the petition. While some individuals appeared as an anonymous signature on these petitions to protect their privacy, everyone signing the petition had to identify themselves behind the scenes in order to be recognized as a signer of the petition.

    If Phoenix Rising is going to engage in the OMI's invitation to voice the thoughts of its Forum members then I would suggest that a similar mechanism be used as seen in the two petitions noted above. This will serve to provide written evidence of who Phoenix Rising is representing when speaking on this particular topic.

    An important advocacy lesson in transparency that a number of other advocacy groups have failed to address/follow. Without an advocacy group holding itself accountable for who they represent, it allows others (such as the HHS and the IOM) to cherry pick who they want to talk to. There is then no accountability on the government's part to show the reason they have selected a particular advocacy group to talk to outside of a public arena.

    * Patricia Carter's Petition Opposing the HHS/IOM ME/CFS Contract - https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

    ** Mary Dimmock's Petition Requesting the Definition and Name of the illness be changed - http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/
     
    Last edited: Jan 9, 2014
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  8. Marylib

    Marylib Senior Member

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    Bob, I am so relieved to see your response. Am not well enough to express myself well, but Lisa Petrison has written a very cogent post expressing my views.
     
  9. Sparrow

    Sparrow Senior Member

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    Yes. This.

    This is not the place to spend our allotted time focused on the issues we have with the contract itself. They are not set up for that, that is not the purpose of this meeting, and the people we will be talking to probably can't do much about it anyway. I say please save details about that for the venues where it might have an impact. Make a quick statement that many members of the Phoenix Rising patient community oppose the contract, and then move on.

    They are asking us what we want them to know, assuming they really do need to create an illness definition for us. Please, let's answer them.

    Phoenix Rising is being given speaking time to be a voice for those of us here who will not be able to express ourselves personally. We're being given the chance to answer their question. Please don't take that chance away from those of us who desperately want to take advantage of it.
     
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  10. Firestormm

    Firestormm Guest

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    I think the only written reviews of case definitions I can think of are those from Lenny Jason, so if we do agree the question is asking for specific sources that they might consider, then I would like Jason's papers that review definitions to be taken into account.

    I am sure they will anyway.

    His recent paper for example was interesting as it again brought into the equation the idea that symptoms individually might be assessed by severity:

    http://forums.phoenixrising.me/inde...finition-for-cfs-me-leonard-jason-2013.27006/

    Lenny also published a paper in 2012, contrasting existing case definitions at the time, that I sought to draw attention to in relation to the IOM desire to operationalise these definitions:

    http://forums.phoenixrising.me/inde...and-compared-it-to-other-criteria-2012.26511/
     
    taniaaust1, Bob, AzizaJ and 1 other person like this.
  11. alex3619

    alex3619 Senior Member

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    I don't think the IOM can do that. To have only experts means it can't be the IOM doing it. I would be happy for them to not continue with the contract though.

    I did sign your personal petition - disabled people need medical transport. It doesn't really exist here either.
     
  12. adin

    adin Administrator

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    I agree — while we can mention our displeasure with the contracting process in the slides we give the members of the committee, I don't think we need to spend any speaking time on issues that are outside the scope of this committee. We need to focus on telling them what we want them to know while creating/issuing their report. Lets try to stay focused on helping the most of our community we can.

    We can protest the contracting process, committee composition, etc at other times and in other forms. This is about getting the best product out of this committee that we can.
     
    Valentijn, WillowJ, SOC and 3 others like this.
  13. Snowdrop

    Snowdrop Senior Member

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    I would like for it to be well understood that PEM also affects parts of our cognitive functioning as well as physical.
     
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  14. adin

    adin Administrator

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    Just thinking out loud, but do we want to do something unique vs the usual PowerPoint presentation? Since we are such a unique organization, maybe we should try something a little different?

    My first thought was a collage or a montage of patients and a single sentence from each? (Like 10 secs?)-We could get 20ish people and still have a minute to open, make one extra point, and close. This way we could get them to see *us* ... I think that we don't want to repeat the same points that everyone else is going to present. I think that letting them see *us*, over and over again might make the emotional impact that might just remind them that this if affecting people in a real significant way and not just hammering out another report/paperwork.

    Any other ideas???

    Edit : to answer marks original question: The need to know and understand that we are a group of people with a condition that either isn't taken seriously or is mis-treated because medical professionals have "beliefs" instead of guidance, facts, and education — keeping an entire population in a perpetual 'end-stage cancer' state with little care, few treatments, and no hope.
     
    Last edited: Jan 9, 2014
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  15. A.B.

    A.B. Senior Member

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    Challenge the beliefs with facts. Show examples of illnesses that were once thought to be psychological until proper studies revealed that they were physical and that previous treatments based on psychotherapy were nothing but witch doctoring.

    One example is peptic ulcers and helicobacter pylori.

    I'm not a native English speaker, nor do I live in the US, or I would do some of this work myself.
     
    Last edited: Jan 9, 2014
  16. Firestormm

    Firestormm Guest

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    Is someone willing/able to put together then a more technical and powerful presentation given our resources? I mean we are never short of good ideas but it takes someone to put them all together - unless of course Mark and Adin are volunteering their technical skills. If so that would be excellent :)
     
    adin likes this.
  17. Denise

    Denise Senior Member

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    Is PR presenting in person, via webcam/video?
     
  18. Ember

    Ember Senior Member

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    Here is the Laboratory/Investigative Protocol from the ME Primer:
    And here is the research rationale for the ME-ICC:
     
    Last edited: Jan 9, 2014
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  19. adin

    adin Administrator

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    We'll be presenting remotely via videoconference. I assume we'll be able to screenshare or will be able to give the committee written notes.
     
  20. Denise

    Denise Senior Member

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    Thanks Adin.
    It is nice to know that videoconference is an IOM option.

    I assume also that any written material can be provided to the IOM email address mecfs@nas.edu
     
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