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NIH Sidesteps Critical Problems with the ME/CFS Study

Discussion in 'Action Alerts and Advocacy' started by Nielk, Mar 28, 2016.

  1. Nielk

    Nielk

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    http://www.meadvocacy.org/nih_sidesteps_critical_problems_with_the_me_cfs_study

    Excerpt:

    Read more here
     
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  2. anciendaze

    anciendaze Senior Member

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    I don't have the stamina to keep track of Dr. Ungar's views, but has anyone pointed out that the PACE investigators themselves provided data which showed no improvement in physical performance due to CBT, and a statistically suspect "improvement" from GET (omitting data from 1/3 of the group) which left the group mean in the same range as patients with stage III heart failure. If she regards this as "recovery" I think this disqualifies her from any study looking for physiological disease.
     
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  3. halcyon

    halcyon Senior Member

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    The criteria changes are making my head spin. I hope they understand that the IOM and CCC are clinical criteria. The ICC criteria should be used instead as it was designed as a research criteria as well and even includes a whole section on how to use it in a research setting.
     
  4. duncan

    duncan Senior Member

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    It is because we unequivocally support unbiased biological research into ME/CFS, that many of us feel compelled to urge that anyone associated with the BPS or false illness interpretation of ME/CFS be removed from the study. (Ditto for criteria - anything less than the CCC, and preferably the ICC, should have been discarded at study inception).

    If they advocate CBT/GET, then they bring with them an attitude which can contaminate the research's integrity - and the individuals who most blatantly embrace those largely discredited beliefs are in positions to qualify the patient candidates.That is intolerable.

    The really sad thing is that this is wretchedly, nauseatingly, and insultingly obvious.
     
    Last edited: Mar 28, 2016
  5. and quite deliberate.
     
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  6. jimells

    jimells Senior Member

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    Yes indeed. NIH sprung this on us without even a warning to their "partners" at Solve ME/CFS. This study is a giant UP YOURS to Solve and the rest of the patient community. They rejected every recommendation in the last CFSAC report. Their study is populated with bogus criteria, unsuitable comparison groups, and prejudiced researchers. Meanwhile Unger is *stlll* conducting useless studies comparing methods of implementing discredited criteria.

    The only thing they haven't done yet is to rent a billboard along the Beltway (interstate that circles Washington DC) that says "We Hate ME Patients".

    I have yet to see any evidence that patients have been asking for a Clinical Center study - so whose idea was it anyway?
     
  7. anciendaze

    anciendaze Senior Member

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    I hate to tell you that bureaucracies may not function in any intelligent manner. My experience with NASA never turned up the aliens sent here to quarantine the Earth some people suspected, but that organization managed to destroy U.S. capability to launch manned space missions.

    In any given situation, and in a wide variety of environments, people have an astonishing ability to keep doing whatever made some kind of sense to them at some time in the past. This behavior will continue so long as it does not interfere with the regular cashing of paychecks.

    A more sinister aspect is that bureaucracies have any number of ways to accomplish nothing, even if everyone in the organization is trying to accomplish something. It should never be a surprise to discover significant numbers of people on the inside working at cross purposes. Whether this is the result of some Moriarty issuing orders to coordinate obstruction or not is seldom clear. I've repeatedly said that the problem with conspiracies is that the level of overall intelligence exhibited is set by the least sharp insider.
     
  8. leela

    leela Slow But Hopeful

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    It's true that bureaucracies are kafkaesque entities.

    In pondering the growing list of concerns, it occurs to me that it might be most effective for us, as a collective force,
    to focus relentlessly on proposing solutions rather than simply pointing out problems. No one responds well to being picked on
    or reprimanded--and given our history of being painted as "vexatious" or big unsatisfiable whiners, I propose we present this agency
    with a list of things that are essential to a proper study rather than listing things we think are wrong.

    In my experience, approaching with proposed solutions/courses of action rather than direct criticism invites more openness and responsiveness. The criticism is of course implicit, but it is included in what is essentially doing the work for them, in proposing actions that are inherently more beneficial than the ones being criticised.

    In other words, things like
    -Replace Walitt and Gill with [proposed names]
    -Include 2 day CPET
    -Use ICC research criteria
    -Include severe patients
    -Establish line of communication with experienced specialty clinical and research experts
    -Review and integrate the following studies (list a selection of excellent ones)

    etc
     
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  9. Nielk

    Nielk

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    That is what this blog documented. Each section lists problems and then direct ways for NIH to correct those exact problems.
     
  10. leela

    leela Slow But Hopeful

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    Yes. I think if we can pull off a coordinated effort to keep communicating these direct changes to NIH, we will have a better chance of seeing some change.
     
  11. jamie

    jamie

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    Reading the comment By Jeanette showed that they are using the IOM findings in ways that go directly against the IOM suggestions in multiple ways.

    I wonder if the woman who headed up the IOM would be able to speak up if she were made aware,

    They won't listen to us but I imagine they would not like their findings being used in ways they specifically said not to. I don't remember her name but she seemed to really care even if she didn't get everything right I got feeling she took it very seriously.

    Also they IOM and P@P both said to stop it with the psychology stuff yet all the clinical "experts" in the is study are from that school.

    If the NIH and CDC want to use them as cover they should know that they are being ignored or wrongly used.

    God I'm sick of their shit. It did not have to be this difficult. many advocates are saying trust them play nice but really they are making it impossible. A clean study with a clean set of patients was easy enough to do. For some reason they don't want that.
     
  12. leela

    leela Slow But Hopeful

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    Amen, girlie.
     
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  13. viggster

    viggster Senior Member

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    So some people want the study to include severe patients AND have a mandatory 2-day exercise test? Am I the only one who sees something wrong with this idea?
     
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  14. shannah

    shannah Senior Member

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    I don't see how this could be possible... or even advisable!
     
  15. duncan

    duncan Senior Member

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    Well, divide 40 CFS patients into two groups, after dumping the Lyme control. One group that the 2-day exercise test is mandatory, because their disease status allows it. One group of severe patients who do not take the 2-day test.

    Easy. Everyone is happy.
     
  16. leela

    leela Slow But Hopeful

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    @viggster. I was using an example list (I said "things like") as to how to proactively suggest solutions that have been mentioned previously, as well as presuming that a sensical approach will be made, as @duncan has already suggested. This in contrast to picking out flaws only. The entire point of my post was to encourage a shift from being problem-oriented to solution-oriented.
     
    Last edited by a moderator: Apr 1, 2016
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  17. jimells

    jimells Senior Member

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    Trust is irrelevant. We need them to do their jobs, not be drinking buddies. People have the idea that if we just ask nicely, or use exactly the right argument and evidence that they will just have to listen. If that were the case then the illness would've been dealt with properly 30 years ago.

    We are dealing with a very entrenched policy. The policy will not change until the social cost of maintaining the policy gets too high. Asking nicely and writing letters to Congress will not move a policy this well defended. Like NIH's Dr Nath said, we need to ACT UP. That was an amazing statement, considering that NIH was a major target of Act Up's criticism.

    One wonders just what the hell is going on behind closed doors. We desperately need a whistleblower to reveal who is really making NIH policy.
     
  18. duncan

    duncan Senior Member

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    There has been a lot of measured commentary. I would venture most have been reasonable entreaties to get rid of the psych group. Other issues have also usually been approached in an even-handed manner. We are not a "hysterical" group, despite how some would like to portray us.

    Regardless, Nath and Collins should be listening and acting.

    We are right.
     
    Last edited: Mar 30, 2016
  19. alex3619

    alex3619 Senior Member

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    Taking a step aside from direct argument, let me point two things out.

    1. We have been waiting for government (i.e. bureucratic) action, real funding, a positive response to some of the CFSAC recommendations, for a very long time. We have been demanding it.

    2. We are expecting government to operate like a clean efficient and focused business. Bureaucracy is bureaucracy. There are several different forests of deep entangled rules they have to work within, and that is NOT going to change. They cannot do what they are not permitted to do, and unless someone can point out ways around these issues (which most probably exist) nothing is going to happen.

    Its like we have been asking for 12 more horses to pull our plow, and the typical response we finally got is six horses, two mules, two donkeys, an oxen and even a zebra. Because, you know, zebras kinda look like horses, and oxen pull plows in some parts of the world.

    Trying to fix all the issues, with deeply entrenched views and policy working against us, even with the best goodwill from many in the NIH, will be a long road at the very best.

    We can use the plow animals to plow, or we can eat them. We cannot do both, though we might be able to use the six horses to plow, put the zebra in a free range zoo, and eat the rest. We lack deep knowledge of their issues.

    Yet I am NOT saying stop the protests. Quite the contrary, they need to know we are looking. I am saying that unless we want to cut the NIH loose, which would be a massively regressive step, we need to be more realistic about how they can respond and how they cannot ... and yes I am aware that some within the NIH will use such realism to their advantage and not ours.

    Within the NIH there is clear and pervasive ignorance of the long history of bungles and politics. I would suggest we make a copy of Oslers Web available to participating doctors, even if only a few library copies within the NIH.

    If we want a more realistic perspective we need to look at the possible benefits as well as the possible risks, and create better ways to deal with the issues.
     
    Last edited: Mar 30, 2016
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  20. jamie

    jamie

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    I don't know where to put this but it's all over the news. Seems like we overlap so much both with symptom and fighting the same battles.

    The study already has detractors. "You do a lousy study that's designed to fail, and you get a failed study. And that's basically what this is," says Dr. Raphael Stricker, a board member of the International Lyme and Associated Diseases Society , or ILADS, which advocates for the long-term use of antibiotics therapy.

    There have been four other clinical trials, funded by the NIH, that have come to the same conclusion as Kullberg's study and none suggested long-term antibiotics helped. But Stricker says the studies didn't test enough people, use a sufficiently aggressive antibiotic regimen or continue therapy long enough to eradicate persistent, hidden Borrellia infections.

    http://www.npr.org/sections/health-...ment-gave-no-relief-for-lasting-lyme-symptoms
     
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