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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. golden

    golden Senior Member

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    taniaaust1 and Ren like this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If you don't have time to read the letter here are my points:
    • The Contract Must be Cancelled
    However, in the case that the contract proceeds, God forbid:
    • Non-Experts Must Defer Completely to the ME/CFS Experts
    • Adopt the Canadian Consensus Criteria
    • The ME/CFS Definition Must of Course be Entirely True and Accurate
    • Adopt the Term "ME"
    • Neither Employ the Invalid Reeves or “Oxford” Criteria, nor the Term "CFS"
    • Health and Human Services has Set Up this Process to Arrive at an Inaccurate Definition Once Again
    • Please Listen to Representative Experts and Patients like Jeannette Burmeister, not CAA and PANDORA
    http://forums.phoenixrising.me/inde...n-comments-for-iom-panel-first-meeting.27597/
    Wildcat likes this.
  3. Andrew

    Andrew Senior Member

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    The purpose of diagnostic criteria is to differentiate a patient population from other patient populations. Unless one field tests criteria on actual subjects, and it proves to be accurate, there are no evidence-based criteria. All we will have from the IOM is an evidence-based hypothesis. And this does not justify its use.

    Also, you cannot take evidence from research based on weak criteria to create better criteria. And in the absence of reliable biomarkers, the only way to improve criteria is a combination of evidence and the observations of experts. This is what the CCC and ICC are. The IOM has purposely stacked the committee to limit the number of differing expert opinions, and replace this with people who cannot possible absorb the literature in such a short period of time. So most of the members will not be working from a strong understanding of the evidence, nor do they offer direct experience.

    If I had a loved one who was suffering from a serious illness, I would not insist that the medical team include mostly people who have no special knowledge in what my loved one is experiencing. And I would hazard a guess that not one person in the IOM or HHS would with people they care about. Yet, this is what they are doing to us.

    I think we can also understand something from the IOM's track record. In their Gulf War Syndrome treatment guide is a section about CFS. I read the sections on graded exercise. They reference three web pages. The web pages offer no citations to studies. The IOM also cites two studies. Neither of them dealt with whether CFS is helped by graded exercise, and one doesn't even mention CFS. They also have a section on pharmaceuticals that only mention pain an sleep control. I have two books that cover much more than this, and they include citations.

    I think this shows an underlying weakness in the IOM process. The veterans were making the same complaints we are (ex. not enough experts) before the process was even underway. Yet when we raise these concerns with the IOM, they say they are not responsible for the low-level of scholarship in their past projects, and that the panels are. But they selected the panels and established the quality control. Their web site brags that research will "undergo a rigorous, independent external review by experts." I guess we can see how much good that did. I've seen better work from high school students.
    Last edited: Jan 18, 2014
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  4. Snowdrop

    Snowdrop Senior Member

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    I know we are lacking complete agreement on whether this IOM contract (if it goes forward) will in fact not be a disaster (the prediction of the majority?) but I see us all on the same side still.
    We all want the same thing for ourselves and/or our loved ones out of the contract.

    What I am now wondering is whether we can't have another poll (you can never have enough polls :)) that would winkle out this exact information. That is: what is it as a united community that we expect the IOM contract to achieve given their mandate.
    Or, what would at a minimum be acceptable to us? (keep the bar high).

    I really do see us as all on the same page here. No one can know with complete certainty how this will unfold. Our only difference is how we feel about trusting this process. I have trust issues and would be happy to be proved wrong in this. I will make a prediction that it will wind up much like the panel itself. Not entirely bad but not really good enough to have moved us forward in a way that really changes the landscape. And again, not being a trusting sort they might hope by walking the tightrope to keep us divided on the utility of the outcome. Divide and conquer.

    Also, I apologise if my comments would have been better posted to another thread. I'm following multiple threads and my thoughts get tangled together.
    SD
    brenda and Sparrow like this.
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    We can argue forever and about who is 'right' and who is 'wrong' - the point of my post however was not an assertion of correctness but to underline that there is no single patient perspective, and that PR can not and should not claim to 'speak' for all, other than to specifically recognise that M.E/CFS patients (or M.E - encephalitis or encephalopathy - or CFS or CFS/M.E) are a large and diverse group with a multitude of views about their illness(es). If PR wants to pronounce on science or medicine or bureacratic processes, then it must do so on 'it's own cogniscence, not an appeal to authority delivered by a notional monolithic 'community'. I'd also say that simplistic internet 'majoritarianism' is as bad as illegitimately claimed 'community' authority.

    As far as your arguments to my post - I don't understand your logic. Your assessment leads only to the position that description of M.E/CFS (or whatever) is impossible because of a lack of research - which of course leads to there being no research because there is no describable disease. Your argument for field testing in the absence of of identifiable pathology is misplaced. Unless the IOM identifies a definitively inclusionary pathological element - then primarily any new critria will remain descriptive of symptomology - there will be nothing to 'field test' - patients either do or do not display the inclusionary symptoms. In the light of research since (1994)Fukada was accepted by the CDC, there's likely room for some pathological reference, but if pathology is made definitely inclusionary, then 90% of Fukada/CCC qualifying patients will almost certainly be excluded and we'll be looking for a new name. It seems very unlikely the IOM would go down such a route given the brief they've been given.

    I don't understand your appeal to 'experts' - if we take the lauded 50 then not one has achieved any substantive insight into the illness they are supposedly experts in, and a large number appear to me to be little more than self promoting quacks preying on the uncertainty of patients neglected by medical specialisms which have found the intractability of M.E/CFS to be unprofitable to try to break. The one does not excuse the other, nor does the absence of excellence promote mediocrity. IOM offers a break with the past - that ought to include ditching the snake oilers, the superannuated and the buck chasers. The IOM proces does of course need 'experts' - essentially those with competence in epidemiology, nosology and critical thinking. If you want to continue the schizophrenic re:fighting of old battles and treat the IOM as though it were Reeves era CDC, no one can stop you, however I don't think PR should drag itself down into that absurdity.

    IVI
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I think that is wrong. Even at the level of saying 'we all want a cure', I doubt that there is an absolute unity given that there will be huge variation in cultral conception of how such a 'cure' would be delivered across a diverse patient group. For some it will be enough that a cure would be available to the wealthiest in certain countries, which in itself has impliations for the direction research.

    Refusing to acknowledge difference doesn't achieve unity, it simply ends up camoflaguing discrimination and excusing enmity. It's acceptable on PR to consitently denigrate patient organisations which are seen as not being 'us', to the extent of a recent call to destroy one of them. And there's a thread where the son of Jewish escapees from Nazi Germany is directly compared to Hitler because of his professional activities. Assuming the standard levels of M.E/CFS prevalence, then there are around 25,000 Jewish heritage M.E/CFS sufferers in the US alone - I don't see these Godwinesque attacks on someone who happens to be Jewish, as being helpfully 'inclusive' even if not intended as anti Semitic.

    There isn't a single unified M.E/CFS 'community' and there is never going to be; what there could be is a reasonably respectful acknowledgment of difference, and commitment to co-operation where it is achievable. However the wish for 'enemies' and the rewards of having someone to attack invariably trumps any such commitment where the internet is the mediating field.

    IVI
  7. Nielk

    Nielk

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    @In Vitro Infidelium -

    You take issue with people who denigrate Simon Wesselly, yet you comfortably denigrate all 50 experts who signed the open letter to HHS urging them to cancel the IoM contract. You refer to all of them as snake oil salesmen. I have a major issue with that.

    Many of these clinicians and researcher who signed the letter are very well respected in their field. The fact that they are willing to devote time to such a misunderstood and marginalized disease says a lot about their character. Most clinicians are not willing to touch a patient with this disease, preferring to treat them with anti-depressants, GET and CBT at best.

    My specialist who signed this letter actually saved my life. I was declining very fast and was close to becoming totally bed bound and disabled when I finally found him and he was able to get me back at some functioning level. About a quarter of his patients are helped to different degrees by his protocol of anti-viral, B12 shots and other treatments. It is not a cure but, then again, how many disease have cures? Most diseases are 'manages' not cured. I had severe Crohn's for 15 years and it was 'managed' with prednisone. My mother suffered and died of complications from Lupus. She was able to somehow'manage' with it for years with treatments but, then succumbed when it permanently damaged her heart.

    To say that these clinicians are snake oil salesmen because they have not cured or come up with anything new for the the disease is a ridiculous statement and I take affront to it.

    I would also point out the fact that some of these same 'snake oil salesmen' who signed the letter of 50 are actually serving on the IoM study. Furthermore, some of the authors of the CCC and ICC which you denigrated too, are on the IoM panel. You have a lot of faith though for this new IoM process which is sponsored by HHS.
    Roy S, dannybex, taniaaust1 and 3 others like this.
  8. Mark

    Mark Acting CEO

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    PR has not and does not intend to claim to "speak for all". Wally warned of this point in this thread above, and I have included it in my notes on the thread, though I don't think we would ever be likely to do so anyway. The IOM have invited us to present to them regarding what 'aspect or information' we think they should be aware of, and we've asked our members what they think we should say - that's all.

    What I personally believe we should aim to do is to speak for our members, give them an opportunity to be heard, and aim to represent not only the majority view but some minority views within our membership as well. That's not to say that we should express every contrary viewpoint that an individual expresses here, but neither should we just take the view of 51% and ignore the view of 49%. The community can also work together, on the forums, on identifying areas where all - or the vast majority at least - are agreed. If we had enough time, I would have liked to organize a survey, as Pandora did, and if we can establish an Advocacy Team with enough volunteers to organize such things, that's what I would ideally like us to be doing. Of course larger surveys and studies of patient views would be ideal; meantime I still think we should do what we can to give all patients the opportunity to express their views.

    All points of view can be freely expressed on Phoenix Rising (it is the way that opinions are expressed, and not the opinions themselves, that is sometimes subject to moderation), and any patient is free to express the viewpoint you've put forward (eg. opposing the CCC and ICC). If there is a signficant number of ME/CFS patients out there who agree with your views, they are free to join and express themselves. Similarly, any patients holding opinions similar to your own has been free to express themselves at CFSAC, the NIH Stakeholder Workshop, and other similar exercises that give platforms for patient views to be represented. Within all such exercises that I've observed recently, I have not seen the kind of divisions and diversity in opinion that you suggest, indeed I've seen a great deal of commonality in the views of the vast majority of such speakers.

    If you're claiming that there's a load of ME/CFS patients out there who think the CCC and ICC are a load of rubbish (or 'stupid' as I think you called them) then I request evidence from you that this is the case. There is certainly good evidence of support for the CCC from a very large proportion of the online members, support groups and expert researchers and clinicians - that evidence is in the forum discussion threads, the online petitions, and the experts' and advocates letters. While I certainly don't assume that there is not a significant number of patients who hold different views but just don't express them publicly, unless they express those views in significant numbers I think we have to go with what is said by our members when we try to assess what our members want us to say.

    I think we should do our best to represent our members and their concerns. Membership is open to anyone, and members are not moderated or censored for expressing particular opinions within the broad range of views that you talk about. I don't see anything wrong with this as an attempt to give patients a voice, but I do agree with you and Wally that we should be very careful with our language when we talk about whose viewpoint we are representing, and not make claims that over-reach.
  9. Mark

    Mark Acting CEO

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    By the way, I'm sorry I have not been able to be more active in this thread as I was hoping to. I'm hoping to post a bit more here some time in the next 24-48 hours.
    golden likes this.
  10. Andrew

    Andrew Senior Member

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    That's not the conclusion I draw. A description is not a criteria. A criteria picks out those symptoms that are most likely to differentiate. Too few and the field is too broad. Too many and you miss subjects. The goal is selection, not description. That it the purpose of field testing. To see if it works. You don't simply announce that it does. We've had quite enough of that already.

    I think the name problem can easily be solved by naming it as most other illnesses are named. Just give it the name of historical figure who did early research. That's how most illnesses are named. If you don't believe me, go to Google and search on the word "syndrome."

    And there is a big advantage to NOT having the pathology in the name. As the understanding of an illness changes, the name is not confusing the research. The name has been hurting us big time because researchers feel free to do fatigue research and claim they are researching our illness.

    They manged to figure out that we aren't simply a bunch of fatigued people who need to exercise. That's more than the CDC was able to figure out. That's more than the medical establishment in England was able to figure out (with some notable exceptions). And it's more than most doctors I see can figure out, despite my giving them a list of all my symptoms.

    I never said experts had a cure or fully understood the pathology. But let's look again at the IOM's last effort with CFS. All they did is rubber stamp the CDC website (and other websites that follow them) and draw conclusions from studies that didn't even study what the IOM claimed they did. Why on earth would I want them holding my future in their hands.

    Anyway, I think I have something that many of us might agree on, because it's a solution that utilizes most of what has been suggested. I'll post after I get it written up.
    taniaaust1 and Snowdrop like this.
  11. Snowdrop

    Snowdrop Senior Member

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    @IVI

    Hello IVI

    I don't disagree with you about the fact that we are not a single united community. When I suggested that we could agree and are united with regard to wanting to be well as a patient community I admit I pretty much saw that as self evident.
    Perhaps I am way out of my depth here but if we want to be heard by and helped by an organisation that is in a position to do so isn't the political reality to put aside some of our issues in order to have some voice that can speak for us all? Otherwise we have no possibility of being taken seriously by those who have the power to grant monies to help us.

    Your point about how some might be happy if a cure could be accessed by themselves without it being accessible to countless others who could not pay is valid. I personally would be happy to see us united to fight for universal access to any therapies that come from where ever. I have no idea what you're talking about regarding Jewish sufferers and why they might be exempt from being offered a cure. Regardless of these differing opinions I don't see how that stops us from uniting on the issue.
    Again, I think we need to put aside our differences and show some basic level of unity. We can acknowledge our differences openly (I hope) still. I see that you say as much in your final paragraph. Your point about the wish for enemies and someone to attack is lost on me I'm afraid.

    Others have already pointed out that polls may have an innate bias toward those who are likely to answer such a poll.
    So much of life is messy and imprecise. We are suffering all in our unique way with this illness. I still don't see how we can't broadly agree on some level as to how to approach 'the big leagues'.
    SD
  12. Andrew

    Andrew Senior Member

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    The following is what I would like the IOM to hear regarding the criteria. I am still working on an opinion regarding the name. And I would present this myself, but the IOM has seen fit to exclude testimony from anyone who is not well enough to travel to their meeting. I was also told by one of their reps that it's almost impossible to get people at these IOM projects to read submitted written material. So I have little hope that anything I submit in writing will be seen.

    Anyway, I think you will all see what my solution (at the end) is trying to do. I am trying to give a a way to force the CCC back into the picture, because I have little hope that this IOM process will adopt it. I also think the CCC is the best we have now, and anything new should be proven to be better.

    Last edited: Jan 19, 2014
  13. alex3619

    alex3619 Senior Member

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    [My underlining.]

    This is EBM in a nutshell. Its a managerial process, not a scientific one. Very rarely is anything actually tested. Its been described as a way to write a succinct summary of the science, and to create simplified recommendations from complex scientific publications.

    We HAVE biomarkers, they are not used. We just don't have diagnostic biomarkers, though the 2 day CPET may soon be considered diagnostic at 95% accuracy. Abnormal findings are routinely ignored ... there is no funding or interest to research them in the wider research community. This goes back to McEvedy and Beard. When they published their unfounded claim that ME is mass hysteria in 1970 there was a sudden loss of interest in funding ME research, and this was noticeable more than a decade before the creation of the CFS label in 1988.

    Let me point out again that McEvedy and Beard never saw a single patient, and never tested their hypothesis, yet it was widely accepted. McEvedy even had a history of producing conclusions without examining patients, he had done it before.

    On the 2 day CPET, I expect the specificity is close to 100%, its the selectivity that is only 95%. That is far better than some accepted diagnostic tests. Even if this is finally found to be not diagnostic of disease, its still diagnostic of profound physical disability.

    Phoenix Rising can only represent Phoenix Rising members, and is subject to non-response bias. That is the members who do not respond may or may not have the same views as those who do, or may or may not have the same views if they were informed and participating. Advocates are a self selecting group.

    What can be said is the overwhelming majority of responding advocates agree that the IOM process is inadequate.

    Critical thinking is noticeably lacking in many EBM reviews. Dogmatic thinking is very visible. This is not always the case though. Some EBM reviews, including some Cochrane reviews I have read, do attempt to grapple with the science, and not just process the numbers.
    Last edited: Jan 19, 2014
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  14. SOC

    SOC Moderator and Senior Member

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    Oh my! :jaw-drop: While that might be eye-catching, my opinion is that the last thing we need to do is present ourselves as a bunch of people laying around in our jammies. Much too likely to reinforce bad stereotypes.

    We were proud, working, tax-paying contributors to society before this damned disease hit. This disease has caused great loss to society. That's how we need to present ourselves, imo.
    dannybex and Purple like this.
  15. alex3619

    alex3619 Senior Member

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    On (a): This is ignoring the political process. Any claim this is purely scientific, should you be implying such, is unfounded, its an empty claim. We need to make a political comment, what we don't need to do is have it dominate the presentation.

    On (b): While conspiracy theories are common, its a mistake to miscontrue reasoned analysis as conspiracy theory. The problems exist, and can be demonstrated to exist, its the reasons behind those problems that give rise to speculations of conspiracy.

    On (1): Why are they misguided? It can be argued that they are politically naive, and it can also be argued that they were misguided before by not speaking out till recently. The entire scientific and medical communities are typically not very politically minded in my view, and its problematic the same cannot be said for some in psychogenic medicine.

    On (2): "there can be no expertise in an undefinable medical condition." ?????? What the? This is a serious logical error or misleading. Its a category mistake. One can argue that any definition of a unexplained putative disorder such as CFS or ME is flawed, and that no such disease group exists. One cannot rationally argue that the patients and their problems do not exist. Our experts have expertise in dealing with maybe hundreds of thousands of patients. That cannot be dismissed, though the extend of the validity of such expertise can be questioned. Yet they are the most experienced ... who else are we going to trust? That doesn't mean we shouldn't be skeptical of their claims. Reasoned skepticism is valuable. Unreasoned dogmatic skepticism is too common though, and oxymoronic.

    On (3): On the basis of what evidence? It started as a consensus definition, however since then it has been used, tested and compared in multiple studies. That is what separates it from the ICC, and hence why the 50 experts prefer it in my view - its not only more politically acceptable, its been more thoroughly tested and applied in the real world.

    On (4): Empty emotional rhetoric. Its an appeal to shame, not reason. Its using emotional rhetoric to silence debate.

    On (5): "The IOM is the most significant administrative opportunity afforded M.E/CFS patients in 20 years, failure to engage with it fully, bespeaks monumental cowardice or pathological obstinacy." [My underlining, my bolding]

    Its an opportunity all right, but an opportunity for what? That is the question. It is primarily an opportunity for the administration, that I agree with. What kind of an opportunity is it for us? The whole issue also ignores a really big problem. We have input on a very small percentage of the material used in the process. We have no input on the process itself, which is highly flawed, and increasingly debated within medicine.

    Cowardice or obstinacy? Are these the only alternatives? Is emotional and manipulative rhetoric appropriate? Where is the rational basis for such a claim? This runs afoul of multiple fallacies in one sentence. Its using emotional manipulation not reason. Its creating an artificial dichotomy ... where for example is the option for a reasoned political analysis and response? Its creating an artificial argument construct, one that does not reflect reality, and then arguing based on it.
    Roy S, Countrygirl, Nielk and 2 others like this.
  16. rosie26

    rosie26 Senior Member

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    That was Beakers dream. It wouldn't be mine either SOC. :D I can't bear to wear nightwear during the day.
  17. Andrew

    Andrew Senior Member

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    When I took research classes I was told to review the literature, create a hypothesis, and test it. And then others test it too. It looks like they found a way to do a slight-of-hand by giving it a spiffy name like "evidence-based."
    WillowJ and Nielk like this.
  18. taniaaust1

    taniaaust1 Senior Member

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    But when they did all this with the GWS people they ended up making treatment recommendations for them too. What's stopping them doing the same with us? Im expecting they will do it to us too.
    alex3619 likes this.
  19. golden

    golden Senior Member

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    What do I think is the most important thing the panel should know?

    That I see no need for it.

    http://www.hfme.org/metests.htm

    (My emphasis)
    "
    M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease, within just a few weeks, providing that the physician has some experience with the disease. There is just no other disease that has all the major features of M.E.
    Objective evidence of quantifiable organic abnormalities in M.E. patients has existed since the 1950s.
    As with a wide variety of illnesses – lupus, multiple sclerosis, and ovarian cancer for example – there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis.


    One cannot test for ‘CFS’ but M.E. is not the same thing as ‘CFS’ (or ‘ME/CFS.’) The presence or absence of ‘fatigue’ is largely irrelevant in determining an M.E. diagnosis except in that its presence may of course make the diagnosis of a large number of well-known fatigue causing illnesses considerably more likely (depression, vitamin deficiency or malignancy for example) (Hyde & Jain, 1992).

    M.E. is not a diagnosis of exclusion or an untestable disease. Tests will only all be normal in M.E. patients – as with all illnesses – if the wrong tests are conducted, or if those tested do not in fact have M.E. (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Chabursky et al. 1992, p.22).

    Contrary to common disinformation erroneously linking M.E. with ‘CFS,’ it is not mere ‘fatigue’ that defines M.E. but central nervous system (CNS) dysfunction. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus. As M.E. expert Dr Byron Hyde explains:
    The one essential characteristic of M.E. is acquired CNS dysfunction. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing (2003, [Online])."

    The testing list is on the link I provided.



    Very Best
    Golden.
  20. Sparrow

    Sparrow Senior Member

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    It seems like a lot of comments here are in response to what we're worried they might do. We're upset about things that might come out of this, or conclusions they might come to, or methods they might employ, or ways the process as a whole is being approached that we don't feel entirely comfortable with (with reason to have some trepidation, don't get me wrong). We're answering the question "what are your concerns about the IOM process". But in the end, this isn't necessarily the right venue for that, and it may not move us very far forward.

    What they're asking for is what we DO want. What would they have to have in that definition so that it would be acceptable to us, because they're about to go and try to put one together. That seems like a fair question to ask (and in fact, one that they should be asking!), and one that I hope we will answer for them. The clearer we can be in setting and articulating that standard, the more likely some or all of it will be met. If there is no hope at all, we have lost nothing. If there is hope, and sincere efforts are truly being made on our behalf, then we gain a chance at a better outcome.

    Making our expectations clearly known now at least gives us a chance. If we don't speak up about what we want to see come out of this process, we can't expect to see any of it.

    So what features would the IOM definition have to contain in order for us to be pleased with it? What would a definition need to look like in order for us to be happily surprised and eager to pass it around to as many doctors as we can? What do we like about the CCC? Where does the CCC have room for improvement? What do we want to see at the end of this process, not just to avert disaster, but to actually create something useful and worthwhile? Could we pool some very specific answers to those types of questions? If they're set on putting together a document, let's tell them exactly what we want to see.

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