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The 35 experts are right not to attend

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Oct 24, 2013.

  1. Andrew

    Andrew Senior Member

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    I read some place that patients are contacting the experts and encouraging them to attend. I think this is not something we should not encourage. They will be walking into situation that is under the control of the same people who shafted the gulf war syndrome patients.

    Now, some say the IOM has seen the errors of its ways, and is committed to including more expert and more patient input. This will make no difference as long as the same people are running the show. Unless their level of critical thinking and willingness to research has improved, it will make little difference. And where it the evidence of that.

    So now, what about all this evidence based decision making they are going to do. Sounds good, doesn't it. Sound real professional and scientific. But what evidence are they going to base this on. Maybe the always popular Oxford Criteria studies, which ignore the syndrome and research only fatigue. Or maybe it will be based on the Fukuda criteria studies, which just happen to leave out post- exertion issues. Or maybe they will use the Reeves definition research, which stacked the deck by using a fatigue-centric selection model.

    The whole idea of getting the CCC into place was so that by using it we would eventually have enough focused research to make better decisions. Building a new definition on the body of existing research overlooks this.

    So why will this be problem if the IOM meeting has a bunch of real experts in it. Well, take a look at what happened to the recent CFSAC meeting, who had real experts in it. They called for a workshop of experts and stakeholders. And HHS took this, reinterpreted its meaning, and presents the IOM project as if it's what was asked for. It is not what was asked for, and plenty of people have let them know this. But does that stop them?? No.

    This is the reason I support the experts in not participating.

    Thoughts?
    Delia and Liz Willow like this.
  2. WillowJ

    WillowJ Senior Member

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    I think the experts should make up their own minds whether to attend or not, and we should support them either way, but not necessarily try to influence them.

    They may have said all they are going to say by signing the letter with 3 additional statements from individuals, or we may hear more from them or some might show up on the committees. I think there are many things to consider and any decision is going to be made trying to do the right thing. I don't think any of us knows for sure what the right thing is.

    There are probably a few very savvy people among the signatories.

    If none show up and the NIH workshop effort and the IOM definition go on ahead, the result could end up looking a lot like Oxford or Empirical. Still if no one (or no one outside of DHHS) uses it, it could be shown up as a poor definition (as Alex mentioned)

    If some of the experts show up and the NIH workshop effort and the IOM definition go on ahead, the result could end up looking like Fukuda (again it could potentially not be used and shown up as inferior) or looking like CCC/ICC (depending on how much input we're allowed).

    It would make even more sense to me to just use something existing such as CCC for now (and cancel all three definition efforts including the CDC one), and fund biomarkers for new/refined definition efforts later. This is, I think, a point of the original letter, and I'm sure it is a point of Dr. Lily Chu's letter. I will gladly support that.
  3. Nielk

    Nielk

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    I agree with you , Andrew.

    Most of the research on this disease has been based on, at best, the Fuduka criteria so that the results are not based on a well defined group of patients. It is only now that some researchers are starting to use the CCC as well for their study definitions but, these studies have just started.

    Is this one of the reasons that the HHS/IOM are in such a great rush?
    Keela Too, SOC and WillowJ like this.
  4. lnester7

    lnester7 Seven

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    I think we should have all patients reps, Call to GWS, HIV, Gay comunity, CFS.... Every single STRONGLY ORGANIZED organization we can get our hands on to support us and represent us with Signs to adopt CCC and Just Overhwelm them with the good research. We are in deep now. WE FIGHT we all we have!!!
    justinreilly likes this.
  5. Nielk

    Nielk

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    Inester7, you are correct in stating 'strongly organized' organization. That is what we need to lead us in this fight.

    I give a challenge out there to all the ME?CFS patient organizations - are you with the patients? are you with the expert clinicians and researchers? Why do I not hear from you when we most need it? We are a group of very ill patients who have been taken advantage of and abused. We need your help to represent us and stand up for us. Organize us into one strong voice in opposition of this contract that is doomed. We don't want it. Our experts don't want it.

    Who will be the hero here?

  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think that if the contract does go ahead, God forbid, we are best off having as many real experts in there as possible to keep the focus on CCC, to NOT give them a consensus and to write dissents in the report, which are allowed. If it still comes up with a bad definition which will still be almost guaranteed, it at least will be a lot better than if our experts are not there. And if its bad we will still criticize it. we're not giving up our right to criticize it.

    That said, I won't be calling any doctors up to urge them on the board. The much more important focus is fighting this contract to the bitter end. And now we have momentum with the 16 new signatures. Lets all pile on and crush this POS contract!
    Sparrow and SOC like this.
  7. Andrew

    Andrew Senior Member

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    Oh well. I guess now I can't decide one way or the other.
  8. alex3619

    alex3619 Senior Member

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    NAME is taking a strong stand: http://www.name-us.org/AdvocacyPages/OtherActions.htm

    I do not know that they are in a position to organize anything though.
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  9. Sparrow

    Sparrow Senior Member

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    I desperately hope that our experts are involved if it goes forward. I don't want it to. I hope we can still stop it, and think we should continue to make it clear how much we are opposed. BUT...if it goes on ahead without voices on that panel who truly know the realities of ME, that is where it could really be a disaster.

    In addition, if we don't stack the panel with people who know what they're doing, and the results are terrible, they can come back at us and say that they gave us the opportunity, and nobody took it. If we have more informed experts involved, they can at least lodge objections that will give us much more room to argue against any misguided definitions that come out of it. It gives us room to say "but even the experts involved in creating it didn't think this was any good". We need those voices.
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  10. alex3619

    alex3619 Senior Member

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    The flip side is if our experts do not join in, and its a terrible result from the IOM panel, we can say that this was predictable which is why the experts avoided it. They knew it was a flawed process. Further, the IOM failed to recruit sufficient expertise. Its all back on the IOM.

    I think its up to our experts to each decide for themselves. What they need to know is that we support their letter about the CCC and IOM.

    Our experts probably know a lot more about the situation than we do. So we should credit them with the intelligence to decide for themselves. If we don't allow them that then why are we backing them as our experts?
  11. Sparrow

    Sparrow Senior Member

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    I agree 100%. I'm happy to support what they feel is right, and obviously it's a completely personal decision for any individual expert whether or not they want to get involved. What bothers me are the active efforts to keep our doctors out of it, or ripping apart those few who have decided that joining the committee is the best way to try to avoid disaster if it does go forward. I feel like we're losing a lot more than we gain with that.

    I can't see the medical community as a whole recognizing that the committee didn't contain enough expertise or that there weren't enough of our doctors involved in the process. I can, unfortunately, see them assuming that the IOM knows what it's talking about. I think getting the end result pushed aside (if needed) could be extremely difficult, no matter how flawed we know it is (look at the fight we're still having about psychological issues vs physical illness, and that one is so obviously false to anyone who really knows this illness). So it makes sense to try to limit the damage in any way that we can.
    jspotila, justinreilly and SOC like this.
  12. Andrew

    Andrew Senior Member

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    I've changed my position to "undecided," but I also need to add something. Any expert who goes their could be walking into a rigged game. The wording of the contract states that they will come up with a new criteria. This puts the expert in an awkward position. How is he or she to stand up for the CCC while being required not to. The expert will end up looking like a trouble maker who is unwilling to work well with others, and all sorts of peer pressure comes into play.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Andrew, I read the Statement of Work again to see what you meant by the mandate that they come up with a new definition.
    https://dl.dropboxusercontent.com/u/57025850/MECFS IOM SOW.pdf

    If by "evidence-based" they mean EBM, which I assume they do then it seems the CCC could not be adopted, because it is based a lot on clinical expertise and studies that aren't considered EBM. Is my understanding right?

    This part about "confusion about the application of clinical diagnostic criteria" was obviously included by Unger since she complains that CCC is too complicated and doctors can't understand it. I haven't heard any other assertation like this or evidence of this conclusion from anyone else. So the introduction is saying CCC, the only clinical criteria out there causes confusion and disagreement among doctors, which is a prime reason that a new definition is needed.

    A bald lie.

    We already have one.

    Anyway, now I think a strict reading of the SOW would not allow the panel to adopt the CCC or anything other than a simple definition based on EBM, which is mostly psychological studies. The more I look at the details of this situation and think about all this the more doomed to disaster the whole situation seems if it's allowed to go forward.

    An ME expert panel member could argue that the elimination of supposed confusion is not mandated by the SOW as it is just mentioned in the introductory part. And additionally there is no evidence for the supposed confusion.

    An ME expert could also say clinical experience and small studies are evidence and the SOW doesn't explicitly require EBM (if you consider the wording "evidence-based clinical criteria" to not require EBM per se). I bet other non-expert panel members might challenge this though.

    What worries me most of all here is the Contract. It's possible the contract spells out that official EBM must be the basis of the criteria.
  14. SOC

    SOC Moderator and Senior Member

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    Actually, none of the psychological studies fit the criteria for EBM. They rarely have controls, much less appropriate control groups. They're rarely blinded, much less double-blinded placebo-controlled. There is no more clear unbiased replication of their research than there is of the biomedical research that is considered inconclusive. The idea that the psychological research is more evidence-based than the biomedical research is pure propaganda on the part of it's proponents.

    If we can't stop this contract, our next best path may be to loudly and publicly (and I mean very publicly in the media and with protests) demand that they don't use lousy research that doesn't meet their so-called evidence-based medicine criteria. We might not get in all the current biomedical we'd like, but we might be able to keep out the psychobabble that is not up to EBM standards (and none of it is). We cannot let the double standard continue. If the biomedical research is not of sufficient quality to be included in their definition, then the psychological "research" most certainly is not.
  15. alex3619

    alex3619 Senior Member

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    EBM has a layered evidence base. Class 1 evidence ... we don't have any. Then it goes all the way down to anecdotal, as in anecdotal evidence from doctors. Almost every study or claim can be classified somewhere there, except that some claims might not be considered evidence at all.

    These classifications are dependent on what version or interpretation of EBM they are using. They offer us a chance to target specific research and make a case that its of high or low evidence grade. That might be important in submissions if we cannot stop the IOM.

    CBT/GET claims RCTs, single randomized controlled trials. However they have never tested or proven their primary hypotheses in these studies, and they rely heavily on subjective evidence, bad statistical cutoffs, and those cutoffs are often absurd once you look at them.

    The advantage of something like a 2 day CPET is it is substantive and well understood empirical measurement, and not subject to much if any subjective interpretation.
    justinreilly, WillowJ and SOC like this.

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