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International experts speak out against the IOM contract to determine clinical diagnostic criteria

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 24, 2013.

  1. Andrew

    Andrew Senior Member

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    Looks like the CAA has not changed.
     
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  2. alex3619

    alex3619 Senior Member

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    One strategy for silencing advocacy is to co-opt any willing advocates or organizations that are threatening to create waves. You get their cooperation, offer small things in return, and continue with your agenda. It works for environmental advocacy, and a book was written about it I think, from the PR company that does this for a living.
     
  3. Nielk

    Nielk

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    So it seems, Alex that HHS has read this book.
     
  4. shannah

    shannah Senior Member

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    Dr. Kogelnik's endorsement is conspicuously missing - also a couple of others. Anyone know why?
     
  5. Otis

    Otis Señor Mumbler

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    I'm not going to delve into the clinical vs. research part of this but I do find the question of "what's good enough?" an interesting question. I would bet a disability check that nobody that signed the letter believes the CCC is perfect. I'm a believer in the 80% solution. This is coming from an anal perfectionist. It's taken me a long time to soften up to get to this point of view - in the macro. Because of unknowns, it's not really worth polishing something in an attempt for perfection because change will happen and evolution will happen naturally, usually faster than you can polish.

    I think this is what happened with the IOM. The majority put their heads together and realized that talking a step backward to something like the Empiric definition (and who knows what the IOM will do to us) would take us from the 80% solution (CCC) to something twice that bad (40%) or worse! So they're attempting to drive a stake in the ground in an attempt to preserve the progress we've made and to allow those who spend all day every day working on the problem (i.e. not the IOM) to continue to refine the solution as we learn more.
     
  6. Otis

    Otis Señor Mumbler

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    This thing played out pretty fast. I'm pretty surprised and impressed at how many they got on board so quickly.
     
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  7. WillowJ

    WillowJ Senior Member

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    At this point, no one seems to know for sure but it could be simply lack of time. Montoya is also missing, as are some others.

    ETA: I have now found Dr. Montoya's name on the list!
     
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  8. WillowJ

    WillowJ Senior Member

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    I agree it's a good point that things could change soon and that may be a good reason to postpone a new definition (particularly two/three new definitions, as CDC is also doing one), but I don't think that's a good reason to continue to use Oxford, Empirical, or even Fukuda in the meantime. We could use an existing, more specific, definition now, and make a new definition later when we have more info.

    I don't trust NICE's conclusion. I think the main differences are 1) whether government was involved. and of course 2) how much say the actual experts had, thus, comparative specificity.
     
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  9. Ecoclimber

    Ecoclimber Senior Member

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    Montoya's name is on the list
     
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  10. Otis

    Otis Señor Mumbler

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    This is a variation on the theme but it's evolved. This organization hasn't represented a real threat to the establishment in a long, long time. They are the establishment. They sold their soul a long time ago. They put on the face of a research org and suck in donations. There's a book in this one too. Hillary wrote part of it.

    They churn out doublespeak faster than the US government which in a way is impressive. Before the letter opposing the IOM contract was announced the CAA announced it would not oppose the IOM, which is to say it supports it.

    In their words:

    For any of you who have listened to Dr. Unger (while sticking pencils in your eyes) these words probably sound amazingly familiar. In other words, let's study the problem until all patients alive today are freaking dead.

    Rewind a couple of years. Presto chango, one Jedi Mind Trick later and the CAA is just doing research. They haven't had to answer any hard questions from advocates in years. What an amazing slight of hand. Now they're in the business of telling DHHS how they think a criteria should be selected/developed.

    Well, GAME ON, CAA. I'm with the signatories of the letter opposing the IOM.
     
  11. Bob

    Bob

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    There's so many names on the list, it's hard to remember who's signed, and who hasn't.

    Here's the full list of signatories:

    Dharam V. Ablashi
    Lucinda Bateman
    David S. Bell
    Gordon Broderick
    Paul R. Cheney
    John K.S. Chia
    Kenny L. De Meirleir
    Derek Enlander
    Mary Ann Fletcher
    Ronald Glaser
    Maureen Hanson
    Leonard A. Jason
    Nancy Klimas
    Gudrun Lange
    A. Martin Lerner
    Susan Levine
    Alan R. Light
    Kathleen C. Light
    Peter G. Medveczky
    Judy A. Mikovits
    Jose G. Montoya
    James M. Oleske
    Martin L. Pall
    Daniel Peterson
    Richard Podell
    Irma Rey
    Christopher R. Snell
    Connie Sol
    Staci Stevens
    Rosemary A. Underhill
    Marshall V. Williams

    International Signatories

    Birgitta Evengard
    Sonya Marshall-Gradisnik
    Charles Shepherd
    Rosamund Vallings
     
  12. Andrew

    Andrew Senior Member

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    The problem with all the UK efforts (such as NICE and Oxford) is they review the range of existing criteria and form a new one. This process assumes that the existing criteria are targeting the correct patient group. But they never question the fatigue-centric model. They take for granted that it's correct and proceed from there.

    An illness should be defined by the manifestations of the illness within the patient population, not by the name someone came up with years ago.
     
  13. WillowJ

    WillowJ Senior Member

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    Thanks. I just noticed this and came back to correct my post. Found your correction, too (which was a lot more timely!) And Bob's.
     
  14. parvofighter

    parvofighter Senior Member

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    Mary, thank you for this important review. Here's a perspective on the perils of democracy in medicine, and possible context for the CAA's baffling stance on the IOM contract.

    "THE BEST ARGUMENT AGAINST DEMOCRACY IS A FIVE-MINUTE CONVERSATION WITH THE AVERAGE VOTER."

    This quote by Winston Churchill precisely sums up the problem with using a “consensus-building methodology” amongst a group of ME/CFS virgins... scientists who have little credible experience in M.E. clinical practice nor research, such as the IOM group. The voting process will merely stoop to the masses – not necessarily to the right answer.

    Touting “consensus-building” for the development of ME/CFS criteria as a good thing is tantamount to saying, “We will let the majority rule”. One need only look at the ten-fold epidemiological expansion by the Fukuda criteria, to understand that if a vote were taken amongst scientists working on the hodgepodge definition known as “CFS”, the M.E. voices would be obliterated by the din of the Average Joe: the fatigued, sedentary, out-of-shape CFS patients, many of whom who may indeed do swimmingly well with CBT and GET. No doubt the NICE folks are slathering over the opportunity to talk about "CFS" epidemiology.

    But there are already hundreds of millions of dollars spent on depressed, out-of-shape patients; this is an exercise in redundance. The yawning chasm in funding and care is for neuro-immune patients with the constellation of post-exertional pathology known as ME/CFS.

    In other words, when you take the wrapping off those shiny words: “Consensus-building Methodology”, the only credibility that remains is that afforded by the voters you have put together. In the case of the IOM, that amounts to, “Not Much”. This process would be akin to taking a poll of current practice in ME/CFS "treatment". The majority of practitioners (and I’m not talking about ME/CFS specialists such as Drs Peterson, Kogelnik, Fluge, Mella, & Montoya) are out to lunch, uninformed, stale, and often outright dangerous to their patients, by either ignoring the patient (or telling them to ignore their pathology), or by routinely prescribing exercise without qualification (i.e. without following Anaerobic Threshold limits), for a patient population for which this prescription is outright dangerous. As Winston Churchill would suggest, put a bunch of uneducated, inexperienced voters together in a room, and you deserve the cr@p you paid for.

    So YES, let’s save the money from this exercise in futility: the IOM contract. And why not direct these funds to people who know what they’re doing – the signatories on the letter to Kathleen Sibelius.

    A WORD ON MARKET SHARE
    One final thought: when considering which parties did not sign the letter, I agree that many credible voices may have been merely swamped by their day-to-day work on ME/CFS; after all, the turnaround on the writing of this letter was nothing short of miraculously fast. However some voices – particularly those who have positioned themselves as “the voice of the ME/CFS community” may have some ‘splaining to do. Consider that funding for research organizations is heavily influenced by the number of people afflicted with a given disease. If you mash together “CFS” – fatigue from just about any cause – with ME/CFS, you end up with somewhere near a 10-fold expansion of your “influence” – and potentially a risk of a ten-fold reduction in budgets, should the focus shift from idiopathic fatigue-of-any-origin to the post-exertional, neuro-immune entities that fall under ME/CFS.

    Just sayin’: if you’re wanting to understand why the CAA supports the IOM contract, one avenue of enlightenment is to Follow the Money.
     
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  15. medfeb

    medfeb Senior Member

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    Parvofighter

    You make great points. We know this letter happened quickly since the IOM wasnt announced til August 27 and that these are all very busy people. And the situation with HHS' plans with IOM kept changing so quickly which must have complicated pulling this together. There can be a number of reasons why any one person didn't sign. Short of having a discussion with each individual, we cant possible know

    But to me the key thing to focus on is how many did sign. That is nothing short of remarkable and I am so appreciate that they were willing to take this collective stand.

    Regarding CAA's position, I cant speak for them. But their announcement stated that "any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria". CAA would not have taken this position if they were truly focused on fatigue from any cause.
     
  16. Nielk

    Nielk

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    There is some major problem with this fiscal picture:

    -Ian Lipkin announcement that NIH has no funding for his pathogen study.

    -HHS announces they have a million dollars just laying around to play public charade.
     
  17. Andrew

    Andrew Senior Member

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    I have a quandary here but I don't want it to be taken as a statement against what they experts did. I'm actually thrilled with what they did. They not only spoke out against this IOM process, but also conveyed that they are going to continue using the CCC and possible advancing it via the ICC.

    But here's my quandary. If we (as activists) boycott the IOM, we are leaving the process completely in the hands of a) people who know nothing about ME/CFS and b) organizations like the CAA who always seem to be not on our side. And when it is all over, the government can say they gave patients the opportunity to speak and included a major ME/CFS organization. OTOH, if we do involve ourselves, at least we have a chance to give input. Problem is, though, have you ever seen a single instance where this type of project actually used patient input. Usually it is nothing more than a pat on the head, and then they do what they want anyway.
     
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  18. Rich D

    Rich D

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    I would like to at least point out one important point about where all this may be coming from - the need for an "objective" measure. In other words, the CCC can basically be imitated by anyone wanting to claim they have CFS. As a CFS sufferer, believe me, I understand the complexity of the issue, having recently been burned by my own PCP. But we should at least keep in mind that institutions may have a fundamentally sound reason to search for such criteria. Not that I am taking sides here, just trying to keep us all from looking at HHS as the enemy. That is not productive, even if we think they are wrong.
     
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  19. Bob

    Bob

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    It is a difficult issue to grapple with, isn't it.

    For example, should we now continue our advocacy efforts by recommending that our favoured experts are nominated to the committee?

     
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  20. Nielk

    Nielk

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    You are right, Rich, in stating that we need an "objective" measure for this disease. That is the aim of all the research that is out there - finding the elusive objective measure.

    Some might say that this has somewhat been achieves by the two day exercise testing to prove post exertional maliase (PEM). We certainly need more though.

    But, this is a catch 22

    In order to achieve quality in research we need an effective diagnostic criteria to better select a "tight" patient population. If we don't obtain this better selection of patients in studies, the outcomes will reflect what we have seen as the psych slant on this. We will get more recommendation for GET/CBT, anti-depressants and the like. This in turn will guaranty to produce conflicting and explainable results to impede the validation of objective markers.

    This impediment is the real danger of letting an inexperienced IOM produce diagnostic criteria

    Dr. Kenneth Shine, former IOM president who is the was heard stating he could not recall when the IOM was last charged with defining a disease.

    It is the outdated CDC, Fuduka criteria which mostly overlaps with depression. The CCC has PEM as a hallmark symptom. Most patients who suffer from idiopatic fatigue do not suffer from PEM.

    Is the CCC perfect? I don't think anyone is saying that. It is certainly a great improvement on Oxford or Fuduka. The clinicians and researchers in their letter agreed to take the CCC as a starting point and then work on improving on it.

    (my bold)

    This is my personal greatest fear - that patients will just blindly trust that "institutions" will do the right thing. If we don't learn from history, where are we? It has been almost 30 years, since the outbreak in Lake Tahoe. Where are we as patients with the care of HHS, NIH and CDC? You state that you have been burned by your own PCP. I have been burned by mine ten years ago! This caused me to become more severely affected and to lose my job. I am totally disabled now. Whose fault is this? I can't really blame my GP. He has been taught by the CDC toolkit as to how best DAMAGE me. The NIH has less funding for this severe illness of one million Americans than most diseases. NIH has no funding for important studies like the Ian Lipkin study to find pathogens which could lead to biomarkers.

    In my opinion, if we just let HHS to their own devices without any actions from patients, advocates, clinicians and experts, we would all be either drugged up on anti-depressants or in nursing homes due to the damage from exercise.
     
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