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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. alex3619

    alex3619 Senior Member

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    By itself, it wont accomplish much. However we can then state the experts disagreed. We can show the committee panel knows that. We can show that any conclusion is controversial. It opens up paths for future advocacy. Even if things go as badly as we suspect, and the IOM panel endorses something we seriously disagree with, advocacy will continue. Its not like we can just accept nonsense, we have few options. Accepting disability and death, or very poor medical conclusions, are not things that many of us are going to agree with.
     
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  2. Nielk

    Nielk

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    We have not agreed with the state of affairs at HHS, NIH, CDC for the past 25 years and where has it gotten us? HHS seem to forge ahead with whatever their agenda is regardless of what the patient community nor the experts in the field request.
    The fact that we don't accept it does not seem to have any weight on how this illness is looked on upon. Whatever definition the IOM will ultimately propose will be the law of the land and all other lands. The fact that a group of advocates and/or experts protest it, will have no effect. (imo)
     
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  3. WillowJ

    WillowJ Senior Member

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    In the past, the experts have gone ahead and used DHHS definitions (except the Empiric Approach). This time they may not. It won't stop DHHS from using it themselves, but it could keep a sane corner in the research world.

    Better if we can stop it or get the panel fully representative of a decent approach, with our experts toothed. It is not too late to insist that one of these things take place and we will accept nothing less.
     
  4. Andrew

    Andrew Senior Member

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    True. For example, they represent the Fukuda meetings as one of experts. Keiji Fukuda was a leprosy expert, not a ME/CFS expert. Most people there had zero experience with it.

    I agree. Even after it starts we should try to get it canceled.

    I think they will listen sympathetically, pat us on the heads, and then do whatever they want. But one thing I would like to try is appealing to the sympathy of whatever members they have who are real experts, and beg them not to sell out out in the name of detente, beg them to stay the course with the CCC -> ICC because the it's starting to pay off in research. I'd also like to educate the rest on the history of CFS, and how it was called ME before the CFS name came along and diluted the view of what it is.
     
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  5. Ember

    Ember Senior Member

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    After the publication of the CCC (2003), the "empire" struck back with Reeves (2005). Now, after the publication of the ICC (2011), they've adopted this three-pronged approach, the CDC “data driven” study, the NIH EbMW and the IOM contract. They do mean business this time, and sadly, even Phoenix Rising has let us down.
     
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  6. alex3619

    alex3619 Senior Member

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    The CDC had its own definitions. Most of those we consider experts moved on and started using the CCC, though they still used the original Fukuda definition for a long time. The IOM is the clinical definition, it will only be important in studies looking at clinical trials of treatments, though as I have said before it might bias medical opinion and that could derail grant applications.

    One way forward, should the IOM not be stopped, is to make it irrelevant to research. Simply use the CCC and ICC. Then researchers like Lenny Jason can compare CCC results to IOM defined CFS results and whatever new research definitions come along. However as I have also said before, this might be complicated if grant money is overwhelmingly given to studies that do not use CCC or ICC. So bias is important, even from a clinical definition.

    We also need to be watching the new developments in research definitions.So far we cannot say much. except to protest the CDC is using inadequate methodology by ignoring repeat CPET.

    Under the right conditions I do not doubt the IOM might come up with a good definitions. However there are no clear indications such conditions apply, and the circumstances under which the contract was awarded indicate the opposite.
     
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  7. Ember

    Ember Senior Member

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    The three initiatives are joined at the hip. See the Statement of Work for the IOM contract:
     
  8. Valentijn

    Valentijn Activity Level: 3

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    Sorry, but I think it is rather inappropriate to expect a forum to also be a complete patient advocacy organization, especially when it has no members, or dues, and the people running it are sick.

    Why blame Phoenix Rising more than anyone or anything else? You could just as easily blame yourself for failing to somehow solve the problem. The reality is that all of us, including PR, have our limitations to what we can do. While that might change eventually, it's unrealistic and unfair to demand that PR magically transform into a completely different entity overnight.
     
  9. Ember

    Ember Senior Member

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    I didn't make any such demand. I think it's unfortunate that the banner couldn't have been used to highlight this issue. Individuals were asked to submit articles in order to occupy it, but they (and I include myself here) have likely been too overwhelmed by this issue to do so. To say that sadly Phoenix Rising has let us down is not to expect any individual to solve the problem.
     
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  10. Delia

    Delia Senior Member

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    Because on September 24 Phoenix Rising told us to wait for further instructions. After earlier giving instructions in how to let our opposition known.

    Had PR never been involved in the issue I would not expect it to now.

    Had PR not promised further instructions/information, I would not have expected it to have done so now.


    Had Valuable time not been wasted I would not be so concerned about PR, and felt let down now.
     
  11. Mark

    Mark Acting CEO

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    We're working on getting a couple of articles out about the IOM next week, with the aim of them appearing at the top of our monthly newsletter which is due to go out next Thursday. I'll probably add a commentary/introduction on the IOM to the newsletter.

    The situation around the IOM contract has evolved rapidly, which has confounded our attempts to get an article ready - we had at least one article that had to be pulled because it was out of date by the time it was ready. This contract has (apparently deliberately) been announced and managed in such a way that there has been no notice and little time for the advocacy community to respond - so it's been hard for everyone to get organised in time. Unfortunately this has all happened while I've been on holiday, and we're short-staffed as it is.

    However, we've had a couple of articles on it, and we have a couple more lined up. We're also working on getting some permanent, prominent links about the issue on the forums and homepage. I'm sorry if our response has not been as quick as some people would have liked, but at the end of the day the reason for that is short-staffing, not lack of will, so anybody who's willing and able to help relieve the pressure on our small team of writers, editors, moderators and sys admins is more than welcome to contact me. Meanwhile, we'll get something up as soon as we can - thanks for your patience.
     
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  12. Delia

    Delia Senior Member

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    Oh I am not mad at you or at PR!

    My response was in response to another writer who was admonishing another writer by saying PR doesn't do stuff like this. When clearly PR does, so I listed them.


    I am not at all trying to be hostile or mean to you guys who do the work, or to the reputation if PR.


    I just wonder if an imperfect paragraph with a link to the new forum is better than waiting for the perfect article to come out on the usual post day.

    And I do thank you and all those working to keep PR running!
     
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  13. Hope123

    Hope123 Senior Member

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    To clarify, a "clinical case definition" refers to the definition doctors, nurses, pharmacists, etc. not engaged in research use to diagnose patients they see in practice. The "research definition" refers to the definition used to select patients for ANY research study, whether it is a clinical trial or not. For example, studies of how many people have insomnia as a symptom of their ME/CFS or does biomarker ABC help diagnose patients will use a "research" definition also but are not treatment trials.

    Oftentimes, for most medical conditions, the clinical and research case definitions are almost the same except that the "research" is often stricter. Hypothetical example: you need to have 2 abnormal tests to get diagnosed clinically but need 3 abnormal tests to fulfill diagnosis for a research study. This is because researchers want their study populations to be have the diagnosis "for sure."

    Two problems can see with having clinical and research definitions that are NOT very similar:

    -- Many research projects recruit from clinics; if MDs diagnose a condition one way in clinic and another way for research, this will slow down subject recruitment efforts and thus research progress

    -- Vice versa, results generated from a research definition may not be applicable to clinic patients who were diagnosed with a dissimilar clinical definition and do not fit the research defnition
     
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  14. WillowJ

    WillowJ Senior Member

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    Every time in the past that we have asked for CCC to be made the "official" definition required for grants, the answer has been that "we don't tie grants to certain definitions".

    So the danger here would still be the same one we have always had: the grant review panel not understanding our disease and scoring applications low for not making sense to them (because they are, for example, a psyciatric pain doctor and they think ME is a spectrum functional disease, so CCC and immune studies make no sense, while CBT and adverse childhood events make sense in their minds).
     
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  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Devoting the banner to the IoM issue with links regardless of the most recently published article would be a good and easy start. Also, keeping a short article with links to petitions/the IoM subforum/actions to do as the top article, even if it is not the most recent, would be really great.
     
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  16. asleep

    asleep Senior Member

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    I second this as an interim solution.
     
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  17. Chris

    Chris Senior Member

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    Today's news suggests that Sebelius, unfortunately for us, has had other things to preoccupy her mind these last weeks; it also suggests that she may be on her way out? This does not help us at all, but may partially explain why she has not even replied to the researchers' letter. We may be just road kill in a larger mess. Chris
     
  18. Nielk

    Nielk

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    We don't seem to have much luck. First the government shutdown and now these troubles with Sebelius.
     
    Delia likes this.
  19. Ember

    Ember Senior Member

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    What has become of these permanent, prominent links?
     
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  20. Nielk

    Nielk

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    That's a great question, Ember.

    In addition, I noticed today that the special link to the IOM forum is gone.:( @Mark?
     

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