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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Opening Pandora’s Box: PANDORA Cozies up to IOM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by NotAllInMyHead, Oct 16, 2013.

  1. NotAllInMyHead

    NotAllInMyHead

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    http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/

     
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  2. Andrew

    Andrew Senior Member

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    I'd go over there and respond, but my previous message there mysteriously disappeared.
     
  3. caledonia

    caledonia

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    Excellent analysis - everything I've been thinking and more.

    PANDORA = CAA = HHS = IOM = CDC = DEATH PANEL

    We need to fight this tooth and nail - not "assume nothing can be done, so we might as well try to make the best of it."
     
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  4. Andrew

    Andrew Senior Member

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    I think it would show greater solidarity if we got sympathetic people onto the committee, and they voted for the CCC. It is on the list in the contract. And if anyone I know gets onto that committee, I'm going to ask them to push for the CCC, and to not accept anything other than the CCC.

    The other choice is to stay away. Do you really think the HHS cares if we stay away. Even if every ME/CFS specialist in the world stays away, they will just say Suzanne Vernon is their expert and fill the rest with generic specialists. I don't see how that makes us better off.
     
  5. Nielk

    Nielk

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    I think that if from the day that the letter of the 35 went out, we as a community all of us, each organization and patient would have stood by the 35 as a united front and completely boycotted this contract or anything to do with it, they could not have gone forward. How could they have a panel without one ME expert on there? It would never stand. No one would have shown up for any meeting and without any stakeholders' input they would have had to give up.
     
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  6. Andrew

    Andrew Senior Member

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    Maybe, but this will not happen as long as the CAA exists.
     
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  7. alex3619

    alex3619 Senior Member

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    Naive or co-opted? Its almost always the naive who are co-opted. One of the problems we face as an ME community is political naivety. That includes me. I am learning, but its too slow. All our advocates are learning, but its too slow. To paraphrase a line from a TV show, we are playing checkers, they are playing chess, but we naively think its the same game.

    Its impossible to say what most of us think about this, as most of us (the CFS, ME or allied communities) are not involved, and not speaking out. Yet at least some of those are unaware of the issue. Being non-informed or ill-informed leads to inaction. We need to reach people outside the reach of the usual blogs or sites. If we cannot connect to more ME patients, then how are we going to reach those without a vested interest?

    We also cannot say what the outcome will be. We can only state the risks. How many in any community downplay or ignore risk? A lot? It will be all right. The government knows what it is doing. They are experts, trust them. These messages are part of what we are facing as advocates.

    I started writing a blog that overlaps a little with the blog on Pandora's box, which has now been amended to cite the Pandora blog. Its an opinion piece. I hope to finish in a day or two.

    Alex.
     
  8. Snow Leopard

    Snow Leopard Senior Member

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    The IOM is going ahead whether we like it or not, we may as well try to participate in the process to prevent it from becoming a complete disaster?
     
  9. Ecoclimber

    Ecoclimber Senior Member

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    That is just it, you don't have a seat at the table! What I have uncover is very, very dark and disturbing. Can you prove definitively that you have ME/CFS that is evidence base not symptom base? No one can as there is no medical lab test nor standard that proves you have ME/CFS from an evidence based criteria. Therefore, it falls in the realm of a psychogenic disorder. This is what the outcome will be.

    Documentation will be uploaded as soon as it can be made available.
     
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  10. alex3619

    alex3619 Senior Member

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    Whether we engage in damage control is a separate question to whether we fight both against the IOM contract and the methods used to procure that contract. More on this soon.
     
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  11. Andrew

    Andrew Senior Member

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    We can fight against the contract and also prepare to advocate at the meeting. And although this sounds good to me as I type it, I wonder if it's completely wrong. I certainly don't want to send a signal that we are not behind the experts. But I also want to fight for the CCC at the IOM meeting. But I'm not politically astute.

    Also, what about this notion of a science based definition. Sounds wonderful, doesn't it. We are all going to have a brand new wiz-bang science definition. But what science are they going to base it on? The Oxford Criteria science? The Fukuda science? Or will it be the CCC science? Also, what science is there. What do we have besides thousands of tiny studies with almost no follow through that takes them into large studies.

    The fact is, syndromes are not always defined with scientific studies. Before the tests are developed, they are defined with a list of symptoms and observations. These come from the people who dedicate the most time studying and treating. Those are the people who wrote the CCC. One of my biggest fears is that observational science will take a back seat to laboratory science, even though the laboratory science is not there yet.
     
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  12. alex3619

    alex3619 Senior Member

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    How about evidence-based? That's the buzz in medicine. What is evidence-based? Basically only RCTs get a big tick. Which RCTs are we talking about (mostly) in ME and CFS? CBT and GET. The conclusion is clear. If they go evidence-based, expect psychobabble, unless they actually engage with the evidence itself, and don't use cookbook criteria.
     
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  13. Ecoclimber

    Ecoclimber Senior Member

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    Ok, you are going to love this, It's late and I'm in a weird mood. Anyhoo, the IOM has taken $@% frickin ten years to change a %#@# fricken label from GWS to CMI and after #^%# frickin 10 prior attempts until it met the approval of the VA. I believe that a similar statement was made by Sebelius. This is a cash cow for the IOM on the taxpayers dole. Sebelius didn't tell us about how long it will take, and the prior failed attempts of the IOM Panel costing taxpayers tens of millions of dollars over a ten year period. Don't you think, there should be full disclosure on what the ME/CFS community is buying into? Didn't I hear somewhere about more transparency in government?

    OK..all my keys on the keyboard look the same wierd, been typing and reading all day. I uploaded the document and highlighted notable sections for your enjoyment.

    You are going to have to read between the lines. Ask yourself what is this document really saying. First off, you will notice they put mood disorders, anxiety and depression with the symptoms. Furthermore they lump some more illnesses together Fibromyalgia and chronic fatigue. that may overlapp other symptoms and they threw in awhole new papient cohort from another war. (Because of the complex nature of CMI, managing patients will take more than simply writing a prescription; it requires broadening the definition of treatment.WHAT! The committee evaluated all treatments for which there was evidence, including prescription medicines and alternative therapies. On the basis of the voluminous evidence it reviewed, the IOM committee cannot recommend one single therapy to manage the health of veterans with CMI and, further, rejects a one-size-fits all treatment approach

    What! After these years preaching against one treats all


    Instead, the committee endorses individualized care management plans.The committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms. Other interventions and approaches

    endured by U.S. military personnel deployed to the 1991 Gulf War and to the wars in Iraq and Afghanistan.They are personal and many. While the cause or causes of the many symptoms experienced by veterans who have CMI remain unknown, this lack of clarity does not undermine the legitimacy of veterans’reports of symptoms. What! this was your assignment to increase clarity

    So, basically for the last ten years and hundreds of reports, testimonies, research papers to help define the patient criteria, this llustrous and star studed scammers panel bilked the taxpayer out of tens of millions of dollars to come up with this crap! And they still manage to lack the clarity which they were attempted to defined and instead of individualize medicine for each symptom, they had to broaden thier definition to include all the symptoms at one time. A fact they needed to fix. Give me a break! Was didn't the VA place a paid by performance cause in the contract?

    Enjoy the report, this is just the tip of the iceberg. More will come out on analysis on how they arrived with their conclusion never mind their original goal.

    Enjoy
    Eco
    \
     

    Attached Files:

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  14. Nielk

    Nielk

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    The IOM is going ahead .... because we are letting it go ahead. Not only are we letting it go ahead but, we are encouraging it by trying to vie for a seat at the table. Those that are doing that are playing right into the hands of HHS. If we do have a couple of our experts at the table, they will have the ammunition to claim that we did have an input into the process. A couple of experts cannot control anything on a panel of 15-18. One only needs to look at the GWI fiasco.

    This contract, contrary to what the IOM claims, could be cancelled. It is not legal for government to wrote any contract that they can't back out of. Could you imagine the chaos if that were to happen? Why are people so quick to believe a single statement from PANDORA that IOM told them that this contract can't be cancelled? Really????? It wouldn't bode too well for the IOM if this were to happen, would it?

    Jeanette states:

    Have you been asking yourself why is this being rushed yjtrough like a train who lost their brakes??? Why if they are so confident that this contract is solid are they worried about protests from ME/CFS stakeholders?
     
  15. Nielk

    Nielk

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    Another question I can't get out of my head is why is it that our organizations have to put out statements with spins in order to try to convince us to go along with the IOM process?

    If they really felt that they have faith in the process why not just plainly say, we have faith in this prestigious institution that they will deliver a definition which is way better than the CCC? Why be willing to waste a million of our taxpayer's monies and 18 months in time, unless you feel strongly that they will come up with something much stronger and better than the CCC which our experts have adopted on September 23rd for free?

     
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  16. Nielk

    Nielk

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    Yes, there is something you can do if you don't like or feel comfortable with what is happening. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

    If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
     
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  17. Ecoclimber

    Ecoclimber Senior Member

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    Actually it will be longer than 18 months, their last contract took 10 years and 10 tries and tens of millions of dollars before it got accepted! We have a 35 year history
     
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  18. Snow Leopard

    Snow Leopard Senior Member

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    Who is 'we'?

    This is the problem in my opinion - we are not organised. Too many groups think they have the right to tell people what to do without actually organising, listening, empowering and most importantly representing, rather than telling.
     
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  19. Nielk

    Nielk

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    I agree with you that we are not organized. Should we give up though then? Each person can look at all the information out there for themselves and make a personal decision whether they want this to happen. I wish that we were organized. Part of the problem is that HHS and IOM is making sure we have no time to organize. Have you asked yourself why they are rushing this through.

    It's true that some organizations have failed us. What should we do now though? Just sit back and let this happen. In my opinion the stakes are too high.

    I know many think that all these e-mails and/or phone call are counter productive. They are not! I hear from reliable sources that each piece of mail, each signature and each phone calls matters. Our congressional representatives have to listen to us. They have to read each piece of mail. Just send them a copy or link to the letter from the 35 experts in the field stating their opposition to this contract and ask your representative to look into this.
     
  20. alex3619

    alex3619 Senior Member

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    There are four models of organization that fit with a democratic approach. The first is to get everyone to either vote or work toward consensus. That requires an integrated organization, and plenty of discussion. Voting is faster, but leaves people unhappy. Consensus building is slower, and frequently fails.

    Then there is representative democracy. We vote for people to represent us, then they vote without direct consultation with people. We see this in government, but it leads almost inevitably to the formation of parties, and hence we are back to division. However its much faster to organize and respond than the first two.

    The last is a participatory model. The members of the CAA give it legitmacy, but not as an ME or even CFS representing body. Its a participatory body, and (in theory) should represent its own members, though this is something that has been questioned. Other organizations do that though ... not all fail to represent their members, and its not clear the CAA does either. Members who are with the CAA give it legitimacy even though other groups don't like their position. Those who disagree can choose to leave. Would not PANDORA be in the same position with respect to legitimacy?

    This is complicated by group internal structure. Is there a board? Are representatives elected? Are they appointed by fiat? Any group that is not elected by members, and has important positions not subject to vote, is not democratic. Such a group can also choose to put important questions directly to members.

    Participatory models lead to groups with stated goals, looking to achieve limited objectives. The CAA is one such group. Phoenix is to some extent another, but as a website without an intrinsic advocacy agenda, its only marginally a participatory group. Most people here are not involved in advocacy.

    So that leaves specific groups, for specific agendas. If we participate, those who run the group represent those in the group. Such groups can democratically decide on issues, or go for consensus, or be dictatorial and violate principles of good governance. Legitimacy comes from participation. Such groups represent their members, not the global or national ME or CFS communities.

    The HHS/IOM position is not consultative, a whole other issue. Consultation may occur after the most important decisions have been made, but by that time its too late to change the direction that will be taken.
     
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