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CDC Multi-site Study - An interview with Beth Unger

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 31, 2014.

  1. Firestormm

    Firestormm Senior Member

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    I agree, in part, but would like to see more of them joining together, providing samples, as some of them did for the Lipkin study, for example. There seems little doubt now that those more familiar with our condition will be the ones to carry out the research - will less funding coming from Govt. sources: but they MUST by joining together do these studies on significant numbers of patients.

    I really can't put into words how much I loathe seeing small studies be produced that appear 'interesting' and then never get replicated. I think our condition has had more than enough of these 'pilots' and it's time to really begin replication and/or large powered studies that will negate spurious hypotheses from the past that have been borne on such pilots, or will move the science forward recognisably.

    There is also something to be said I think for being a little cautious in believing a study 'good' because a known 'expert' is behind it. I would like more openness with respect to protocols, and peer-review, as part of or prior to any public effort to raise funds. But when push comes to shove, I would rather see researchers doing it privately, than not doing it at all. And times have definitely changed - we can't rely (not that we could) on Govt. funding for science - and in that I don't think we are much different than in other illnesses - though the $ spent are of course proportionately less.
    Last edited: Feb 2, 2014
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Firestormm i guess its bound to happen in other disorders, but its not something that has been tested in other conditions. It does show disability though.
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hopefully if these private guys come up with something then they might get more govt research dollars. The aussie researchers Peterson is working with at griffith uni are getting reasonable govt grants here, its not in the cancer range $$ but its more then they have done in the past. When issues start arising and being replicated then the govt are going to have to act.
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  4. Firestormm

    Firestormm Senior Member

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    That is reassuring news, Heaps :)

    I wonder what the breakdown of expenditure are for this CDC Multi-site, IOM (well we know is $1m), and NIH P2P? Combined they must amount to a fair whack I guess.
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  5. Christopher

    Christopher Senior Member

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    They already have all the evidence they need to push for fast tracking certain treatments. Ignoring decades worth of biomarkers related to inflammation and immune dysfunction as well as successful treatment trials (ampligen, rituximab) already shows bias and prejudice.

    We already have the data we need to start addressing treatment. They are content to poke and prod us as we keep suffering. We have to stop allowing the abuse and neglect to continue.
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  6. Christopher

    Christopher Senior Member

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    Pennies when we need dollars, Firestorm. Pennies.
    justinreilly likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    GWI is a pretty bad example to use to show that PEM is not unique to ME/CFS ... the symptoms of the two conditions overlap completely, to the extent that they might very well be the same disease, or subsets of the same disease. The only real difference is that GWI includes a group defined by their career, which isn't actually relevant to who a disease decides to pick on.

    Most likely, they have ME/CFS, but have a very specific pathway into getting it: military vaccinations, certain chemical exposures, etc. But that fits pretty well with the ME/CFS concept of the disease being triggered by different types of infections, vaccine reactions, and exposures to chemicals such as organophosphates.
  8. roonie

    roonie

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    has anyone ever seen a government do any good for it people.....ever. One look at the lyme fiasco should tell us all to pick the fight up to a new level. We need protests so the rest of the world see us on the news..not hiding in a back corner watching the lives of ours and, in many cases , our families fall to pieces.

    Why did they want to keep changing the name of the illness every few years....its to keep us all confussed.....thats why. To keep the new patients devided from the old ones. Im with Christopher on this one! They have something to hide. Its quite possible they already know what this illness is. People ...get ready. Did you see Nelson Mendella sit back on his Laurells
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  9. jimells

    jimells Senior Member

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    This "study" is a cruel joke. I'm going to apply for a grant to study fevers. I'll ask a bunch of folks if they think they might have a fever. That will qualify them for the study. Then I'll ask them how hot and sweaty they feel.

    Thermometers will not be allowed - they are just too much trouble, what with the cost, and sterilizing, and having to read them.

    Unger and her ilk are guilty of criminal negligence, but we are the ones serving a life (or death) sentence.
  10. Ember

    Ember Senior Member

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    Dr. Unger writes that “a new definition of CFS is not the objective of this study.” But in November 2011 she described this study as preparatory to a meeting of experts charged with revisiting Fukuda 1994:
    What has become of Dr. Unger's plan to revisit Fukuda 1994?
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  11. Bob

    Bob

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    I don't know, but perhaps she realised that the evidence base was woefully inadequate, and decided instead to embark on a large evidence collecting program? The proposed 'one year' study has turned into a large five year study. Although Unger says that the specific aim of the CDC study is not to create a new diagnostic criteria, I hope that is the direction where it is ultimately heading, in practice. (Assuming that Unger is working in good faith, and competently etc.) Unger is looking for evidence to distinguish patients from controls (i.e. healthy controls and patients with other fatiguing illnesses), and for evidence to create subgroups, and for evidence that can be used to diagnose patients.

    If Unger isn't sticking to her previous ideas (as quoted in Ember's post above), then I think it's probably a very good thing based on this extract from Ember's quote:
    Both halves of that sentence, coming from the CDC, is enough to send ice cold shivers up the spine of any ME patient!
    Last edited: Feb 3, 2014
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  12. Ember

    Ember Senior Member

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    Those aren't assumptions that I can make given that Dr. Unger refuses to use the 2-day CPET or even to disclose whether or not her cohort meets Fukuda or the CCC. She admits that the data are there but contends, “It still, I think, requires some interpretation and discussion.” Those apparently aren't her strong suits.

    Dr. Unger's so-called study looks to me more like an extended fishing expedition. She concluded her comments to the IOM smiling coyly, “So we're just starting. Just a start.” After 20 years, the ICC and CCC languish, and no initiative has been undertaken to replace the CDC's 1994 research definition. Patients are left to suffer or die.
  13. Christopher

    Christopher Senior Member

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    This is an alternate version of the AIDS crisis where no one demanded that the federal government help its citizens.
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  14. Marco

    Marco Old blackguard

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    PEM can also be found in post-concussion syndrome which makes it a bit of a stretch to blame infection, vaccinations or chemical exposure solely (looks to me like the problem is in the brain) :

    http://www.ncbi.nlm.nih.gov/pubmed/23252441

    Probably not a good idea to mention graded exercise :

    http://www.hindawi.com/journals/rerp/2012/705309/
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  15. Firestormm

    Firestormm Senior Member

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    @Marco Ta matey. I shall have a butcher's later :)
  16. Valentijn

    Valentijn Activity Level: 3

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    That doesn't sound like PEM, as it's limited to cognitive abilities and seems to be immediately after activity, not a day or two later. Duration of cognitive impairment is also not specified - so it's quite a stretch to equate the results of that study with PEM.

    And the 2nd link is specifically referring to symptoms during an exercise test, not afterward. Hence it really sounds like exercise intolerance rather than PEM.
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  17. Bob

    Bob

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    Yes, it's important to always remember that PEM in ME has a distinct nature. It's not just post-exertional malaise, and it's not just post-exertional fatigue. It's a delayed post-exertional exacerbation of any/all ME symptoms, in response to even minimal exertion, that isn't resolved by ordinary rest, etc.

    We have to define PEM in ME before comparing it to other diseases which feature post-exertional symptoms.
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  18. Bob

    Bob

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    I agree that the CDC has to prove itself.
    I'm watching what they are doing with an open mind: sceptical but not judging Unger by the past failings of the CDC.

    If I was Beth Unger, I might be start exactly where she is starting.
    I'd be pressing a reset button, and re-starting the CDC's CFS program from scratch with a large study using patients from the clinics of widely acknowledged ME expert clinicians.
    And I'd want to follow the data.
    Yes, we desperately need objective biomedical investigations, but (in my opinion) she's got to start with basic data collection which should have been done 20 years ago.
    She's made it clear that her data is intended to be used for future biomedical investigations.

    Yes, she doesn't seem to be good at discussion.

    The study did not recruit participants using either Fukuda or CCC, so perhaps they are a mixed cohort.
    I suspect that they will probably mostly meet Fukuda, and perhaps the majority will also meet the CCC, because they come from secondary care clinics (suggesting long-term and more severe symptoms).
    But I think that Unger is right not to focus on these criteria.
    She is investigating the data from all ME/CFS patients diagnosed by expert clinicians.
    Hopefully she will be using diagnostic criteria, at part of the study, but that shouldn't be the focus.

    The focus should be on finding subsets based on the data, and then seeing if these match the existing diagnostic criteria or not.
    It would be a shallow and ill-conceived project if Unger was purely attempting to match her data to existing diagnostic criteria.
    For it to be meaningful, and ground-breaking, she's got to assess the data with an open mind, looking for unexpected patterns in the data and attempting to define subgroups based on the data and not on pre-existing (consensus) diagnostic criteria.

    If the data matches the existing diagnostic criteria then that will be a very useful finding. But it might not.

    I think I agree with that. That's what I want her to be doing. Fishing for all the data she can, and analysing it.
    Yes, she must move on to including comprehensive biomedical testing, and I hope she will, quickly.
    If she doesn't then the trust of the patient community will not be gained.
    At the moment there is zero trust.

    Anyway, these are just my own opinions. I know that many don't agree.
    Last edited: Feb 4, 2014
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  19. JKN

    JKN

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    I feel like a stranger in a strange land with all of this talk about the CPET test. I took a cardiac stress test 9 years ago which cause very severe disease progression and heart damage. I am now in diastolic heart failure as a result of this stress test. I also lost my ability to talk.

    "Findings which suggest mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy in CFS patients led CFS expert Professor Paul Cheney to comment. ‘The most important thing about exercise is not to have patients do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ Numerous heart, lung, brain and other abnormalities also show strong evidence that exercise can have extremely harmful effects on CFS patients in many different bodily systems, permanent damage may be caused, as well as disease progression." (Williams 2004, [online]).

    "Not only is it inappropriate for CFS patients to undergo a treadmill stress test or be pushed toward age-predicted target heart rates, but this is potentially dangerous." Philipa Corning, Ph D, Vice President Quest 61, 2003

    Dr. Paul Cheney wrote (www.cheneyresearch.com), "We have a rising case load of diastolic dysfunction seen in 97% of our CFS cases (avg. age 49) and some appear to have what I would call compensated diastolic heart failure. I would define compensated DHF in CFS as an extremely low cardiac output with a cardiac index (CI) below 2.0 and very poor functional capacity combined with the inability to stand which is the corollary in DHF to the inability to lay down flat in systolic heart failure (SHF). Heart failure patients are typically below 2.0 in CI. I have several CFS patients below that number and they cannot stand still for more than 15-30 seconds without having to sit down or fall down. Walking or moving helps which makes sense as that would increase filling pressures and equivalent to laying down. They might be diagnosed as having orthostatic intolerance by others."

    "Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years."

    So I am totally shocked by these exercise tests going on. Unless, I have a different disease, which I don't believe I do, or that there is a difference between ME and CFS, then I don't understand why PWCs taking this cardio test aren't having the same horrific results that I've had. If these tests expand in this study, and PWCs aren't warned of the possible results of severe permanent disease progression, then I fear what might happen to some patients.

    Furthermore, I don't understand why there are no research studies going on today reg. the effects that ME/CFS has on the heart, i.e. this is one of the main causes of death from ME/CFS.

    When I look at the current research most of it seem irrelevent to me. None of it is going to save my life.

    So I just wanted to put out this warning for PWCs taking these cardio stress tests, because there seems to be no serious warning out there. I don't think most ME/CFS doctors understand the possible consequences.
  20. SOC

    SOC Moderator and Senior Member

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    I understand that point -- that Dr Unger may understand that the CDC needs to start over with it's view of ME/CFS. What frustrates me is that she seems to think that only the CDC can do valid research on ME/CFS and therefore their research must start at absolute ground zero. No respect for the work already done by many talented researchers. It seems she feels the need to reinvent the wheel of ME/CFS knowledge.

    We don't have time for the CDC to mess around for 20 years getting up to speed doing their own research to find out what we already know.

    That said, the CDC is (technically) not a medical research organization, they're a public health organization. Original research should be coming out of other branches of HHS. So maybe the focus on operation... rationalizing... whatever that word is :confused:... diagnosis makes sense in terms of their particular responsibility. They're not focused on figuring out what's wrong with us, or how to treat it, just telling doctors how to know who has it. Kinda pointless given we don't have any established treatment even if we're diagnosed. :meh:

    It would (supposedly) allow them to study how big of a problem ME/CFS is, which is definitely part of their public health remit, so the current research may give them some future work. Which, of course, is a benefit to them even if it isn't much help to us. :rolleyes:

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