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Article: Guilty!.... By Association? Taking Our Measure

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 25, 2011.

  1. leaves

    leaves Senior Member

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    With all due respect but I find your post (and Cort's for that matter) condescending and upsetting. Im a grown woman, intelligent and well informed and totally able to make my own mind up. I've observed the CAA and I think it underperformed tremendously, and is often even harmful. A majority of the patients agree with me.

    Sure you can keep claiming that we are uninformed, irrational, biased, moody or what not, but that is not going to get you the support or the legitimacy that you need.
    We deserve respect and representation, at the moment we appear to get neither.
  2. Cort

    Cort Phoenix Rising Founder

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    I don't have any arguments with that but that's not what the article was about. The article concerned whether Dr. Vernon was assessed fairly - not whether the CAA is headed in the right or wrong direction. So- the question remains - how do we assess our figures? By the studies they do and promote and the other works they do or by the some of the co-authors they have?

    Is guilt by association good enough? or do you read the study and base your opinion on that? Do you take the time to read the papers before you put a researcher (and an entire organization) in the doghouse or is skimming the co-authors (and only some of them) good enough?

    The CAA was peripheral to this topic....the question was how do you measure a researchers worth? Guilt by association is one to way to do it for sure. :rolleyes:
  3. leaves

    leaves Senior Member

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    Well then, let me answer that: i dont like guilt by association. I try to take a functional approach and evaluate each study on it's merit. In general i dont believe in 'good' or 'bad' people either: people can be good or bad for something. When people deliver too much bad work, or insufficient good work, or not make use of an opportunity that they can reasonably be expected to make use of (eg promoting ccc) then it may be worthwhile to seek improvement. As I think is the case now. No witch burns.

    You are right that people often make these shortcuts. Indeed in a complex world with incomplete information, fast and frugal ways to establish a persons 'integrity' are actually quite effective ways to predict future performance or unobserved actions. However we'd certainly should aim to do better than that. I guess what stung me is the lesson in decision science whereas we as patients seem to have nothing to decide: what we think is irrelevant as noone listens.

    With power comes responsibility, or so they say ;)
  4. Cort

    Cort Phoenix Rising Founder

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    Thanks Leaves - I appreciate it.
  5. leaves

    leaves Senior Member

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    Sure thing. This is emotional stuff. It's asking a lot of people to keep their heads cool. It's good (and brave) of you to do ask.
  6. WillowJ

    WillowJ Senior Member

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    by "CAA leadership" in the poll that should change, I took that to mean McCleary and probably some one or more other unknown other factors, maybe on the board.

    Not so much Vernon. I'm not entirely satisfied with her performance (especially after that spinal tap comment, which was, as Leaves said, condescending... we do use that to diagnose other serious diseases and while it's not fun and there is some risk, it is an accepted medical procedure and it's bad form, under our current circumstances, make any complaint at all about any established diagnostic procedure which could help diagnose us, regardless of whether she also said other things the reporter/editor chose not to write/print--principles of talking to journalists again, they will print whatever you least want to see in the paper so make every statement count), but not entirely dissatisfied, either.
  7. Ernie

    Ernie *****

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    There is guilty by association and then just plain old guilty.
  8. Cort

    Cort Phoenix Rising Founder

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    OK, I'll bite Ernie...so how is Dr. Vernon 'guilty' as charged? I see a researcher who's committed to, for one thing, transforming the field of CFS research so results come quicker.

    After all this talk about that one quote in that article - you do realize that the Biobank she's built may allow researchers, at some point, to quickly look for the right proteins in the blood-and validate those results??? The Biobank alone could cut years off the search for what's going on in this illness.

    I see someone who's researching cytokine networks and immune activation and conducting studies that suggest increased viral activity.....I see someone who's funding studies showing mitochondrial problems in the brain and exploring if blood vessel problems could be causing the POTS so many have trouble with.....

    She seems to be doing a pretty good job of invigorating this field to me......What is she guilty of??
  9. Dr. Yes

    Dr. Yes Shame on You

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    One concern I have is that that some researchers may find it difficult to look at the body of evidence on CFS in general without letting their own previous research work, along with preconceptions, color their evaluations. In Dr. Vernon's case, there are 'pieces of evidence' that are far more suggestive than offhand remarks like the spinal study one, which I agree was not such a big deal. But consider the following comment from 2006:

    (http://www.maryafischer.com/oprahmagazine1.html)

    That comment seems to reflect a perspective drawn from some of the worst 'research' to come out of the CDC, namely the attempt to connect CFS to a history of childhood abuse.

    In the quote in bold above, Dr. Vernon was promoting a view, derived from the most scientifically bankrupt CDC research, that CFS may be related to early life abuse and neglect. That raises some serious questions, such as:

    -Has Dr. Vernon changed her mind about that research since 2006, or does she still think it's valid?

    -As a scientist, how could she ever have evaluated the experimental design and conclusions of the CDC's child abuse-CFS studies and still agree with them?
  10. Snow Leopard

    Snow Leopard Senior Member

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    Seriously, what is the CAA doing with regards to leveraging certain papers (on the level of disability and economic costs) towards increased federal funding for CFS research? The economic argument is there in black and white, given the papers from Dr Jason (2008), as well as Lin et al. (2011) and comparing the level of funding for other diseases with the economic costs of those diseases.

    Unless the NIH funding is increased towards $150+ million, they still have lots of work to do.
  11. Cort

    Cort Phoenix Rising Founder

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    I understand your concern. So let's take a look at her record. Since that quote 5 years ago when she was in the employ of the CDC do you have any sign that early life events are a focus of hers? If she did have a focus on that do you think it would have shown in the CAA's program? Has the CAA done any studies on child abuse in CFS?

    Or are they spending their precious money studying mitochondrial dysfunction in the brain...and endogenous retroviruses....and how exercise effects the gut and muscle and other receptors.....and XMRV.....and vascular dysfunction..

    Or you can ask what kind of studies she herself was involved in....is she involved in early life events studies? Has she ever been? The answer is no; her studies suggest she's primarily interested in the immune system and gene expression. They also show that she's open to new interpretations. It was on her initiative that the Pharmacogenomics data base was opened to the CAMDA conference recipients to dig into as they wished. Any number of interpretations could have resulted and, in fact, several immune factors, as I remember, emerged from those explorations.

    This is what I was talking about -looking at a body of work ...and yes, what Dr. Vernon said is right; I was chagrined to find out that similar studies have been positive in FM and IBS (we are not alone) and there may be a portion of the population that they apply to....but that is not what the CAA is researching or spending its money on and that is not what her program is about.
  12. Cort

    Cort Phoenix Rising Founder

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    They make that argument all the time. I make it all the time. The CFSAC members make it all the time. The IACFS/ME makes it all the time...That is our biggest weapon and we yield that cudgel all the time; I don't know why it doesn't work - its a pretty compelling argument to me.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    (http://www.maryafischer.com/oprahmagazine1.html)

    Dr. Yes said:
    I entirely agree. This is very serious and shows she has spoken to the media in support of the CDC lies which were based on the Reeves definition. I have criticized her before saying that since she was a co-author on the paper, the Reeves criteria are one of the weapons most used to oppress us and that she works for CAA now, she needs to actively speak in the media about this travesty.

    Some said, well, maybe she should in a way, but she is a scientist and maybe she feels uncomfortable speaking in the media. OK, so now with this evidence that she is comfortable speaking in the media against us with knowing misrepresentations as a government scientist, why isn't she speaking for us as our paid representative, exposing the Reeves criteria and demanding they be scrapped?

    Dr. Vernon was right? She was promoting a study done by CDC with the Reeves criteria. You can't extend that conclusion from Reeves criteria tired people to actual ME patients. Invalid definition = invalid study. Period.
  14. Cort

    Cort Phoenix Rising Founder

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    This has presented several times before. I'm surprised you've missed it. Here's Dr. Vernon on whether the Empirical Definition should be used.

    http://www.cfids.org/cfidslink/2010/010607.asp#2a

    Here's the CAA

    Might I note that the CAA used the Canadian Consensus Criteria for its XMRV Biobank study.

    Besides which the Pharmacogenomics project was NOT based on the Empirical Criteria. The data from the Pharmacogenomics projects - which was what she was referring to - was gathered long before the ED was created.
  15. Dr. Yes

    Dr. Yes Shame on You

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    Cort, like Justin, I find this comment of yours confusing: are you actually saying that Dr. Vernon (and therefore the CDC research based on the Wichita cohort) was right that the development of CFS is associated with childhood abuse or neglect in some cases??

    As for your other points, it is true that since joining the CAA Dr. Vernon has not been involved in any such studies. But technically, that in itself could merely be indicative of the fact that the CAA itself does not approve of such research. And citing Dr. Vernon's own research record does not answer the question of her views on the role of early history psychological factors like child abuse in the development of CFS. Psychology is simply not her area of research or expertise, but as we have seen with the NIH presentation by Dr. Gill, it is very possible to hold even very biased views on the subject even if those views draw from areas well outside one's own field.

    Suzanne Vernon and William Reeves together at a press briefing discussing the Wichita cohort study: http://www.cdc.gov/media/transcripts/t060420.htm

    The Wichita cohort is one of the most poorly defined cohorts in the sad history of CDC research. What real scientific value Suzanne Vernon could find from genetic analysis of this cohort, especially with relevance to real CFS patients (defined AT LEAST by Fukuda, which in itself is too heterogeneous), is a real question. But worse still is the spin coming out of their conclusions - conclusions about CFS drawn from a cohort that cannot reliably be considered a CFS cohort (unless you define CFS by the Empirical Definition), and the CFS model being espoused by Reeves. Some samples:

    (That sounds very much like the quote from Dr. Vernon in my previous post)

    Dr. Vernon sat by and listened to this without critical comment. It's hard to think she was not at least partially in agreement with Reeves at the time. What does she think about it now? Can she issue a public statement on the subject, and on the more general subject of psychological factors in CFS?

    Also, since joining the CAA she has made questionable statements (in "Playing a Weak Hand Well") that suggested a lack of understanding about the issue of CFS definitions. Combining that with her participation in studies using the Empirical Definition and clear willingness to apply the results of such studies to CFS patients in general, one gets an unclear picture of her views on the correct way to generally define this disease (yes I know the CAA is using stricter criteria to select patients for the BioBank, but if indeed that was Dr. Vernon's idea rather than Leonard Jason's, it is because they were specifically looking for a narrow cohort of acute infectious onset patients to compare with the Lombardi et al cohort).

    I would like to know if Dr. Vernon now feels that the findings/conclusions from the studies by her and others involving the Wichita study were distorted by the use of such a poorly defined cohort.

    I would also like to know if she is now willing to promote the use of the Canadian Consensus Criteria as the most accurate means to define this disease for both clinical and research purposes.

    I think it's important to have official statements of Dr. Vernon's position on these subjects as well as on the one underlined previously, and I hope she provides them for us. We deserve to know where the Science Director of the CAA stands on such vital issues, given her own recent (no older than a few years) statements and work with the CDC. The questions I have raised here are not at all based on 'guilt by association', but are informed and legitimate concerns that should have been addressed in public a long time ago.
  16. Cort

    Cort Phoenix Rising Founder

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    No, I said that it was a topic that is being looked at in other allied diseases.

    You can always find a way Dr. Yes......

    It's possible be a world class chess player (aka Bobby Fischer) and be a raving lunatic otherwise. So? The question is what does Dr. Vernon do for this field? What kind of work does she engage? Is she engaging in psychological studies? Or dooes she fund studies that you agree with? How would i know what Suzanne Vernon thinks in private? All I care is that she promotes the kind of studies I like and as long she does that I'll support her.

    http://www.cdc.gov/media/transcripts/t060420.htm

    Again - I really think you're reaching. Dr. Vernon did not put that cohort together. She did not devise the random sampling methods. She did her research with what she had at the CDC. When she went to the CAA she disavowed the Empirical definition and the CAA does not employ random sampling....and they focused on the Canadian Criteria in their first BioBank study. What more do you want?

    So the statements I just posted from Dr. Vernon and the CAA that they do not approve of using the Empirical Definition in research studies do not provide clarity for you? Here they are again. What would Lenny Jason have to do with a CFS XMRV study? (????)


    I would like to know if Dr. Vernon now feels that the findings/conclusions from the studies by her and others involving the Wichita study were distorted by the use of such a poorly defined cohort.

    I imagine that she believes they reflected the cohort they were done on...

    I would also like to know if she is now willing to promote the use of the Canadian Consensus Criteria as the most accurate means to define this disease for both clinical and research purposes.

    I don't know. It would have to be fashioned into a research definition first. I imagine we will find out sooner than later as the CDC is supposed to sponsor a conference on this subject.

    They were some time ago - see above.
  17. Cort

    Cort Phoenix Rising Founder

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    You mean you're actually upset that Dr. Reeves said that the symptom in CFS can't be explained psychiatrically? Would you rather he said they could be explained psychiatrically? I'm glad he said psychiatry can't explain CFS symptoms...Good for him.

    Yes...that was Reeves hypothesis.......

    You mean you're upset because she didn't stand up and publically counter her bosses opinion? :D:D Really?

    Let's assume that the CAA and Dr. Vernon are trying to get at CFS as quickly as possible because that will help people and make them (the CAA and Dr. Vernon) look good and everybody will be happy - and they'll win acclaim. Let's assume that that is their incentive.

    Given that you would assume they would fund the studies and engage in the kind of research that will lead to that. So what have they decided give them the best chance to figure out CFS...

    • mitochondrial problems in the brain
    • exercise induced gut microflora problems leading to immune activation and post-exertional malaise
    • blood vessel and oxidative stress problems that keep blood from getting to the head
    • XMRV
    • reactivated endogenous retroviruses
    • exercise induced muscle, immune and endocrine system receptor upregulation
    • cytokine networks
    • Epstein Barr Virus
    • autoimmune factors
    • patterns of immune activation

    Not even a hint of allostatic stress or childhood illnesses....I think you're safe..I think you can relax -really! She's had three years to turn the CAA program into a carbon copy of the CDC program and she hasn't even come close. I'm sure Dr. Reeves and other members of the program are very disappointed in her and are wondering why she's exploring such wacky topics like gut problems or mitocondria problems in the brain. I'll bet they are smirking as we speak.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    oops. I withdraw that on the empirical definition; but the essence of my objection remains, the Wichita Cohort, as Dr. Yes explained, isn't a valid ME cohort.

    I don't think Dr. Vernon's statement is on that page.
  19. Kati

    Kati Patient in training

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    Wouldn't it be something if Vernon requested retraction of all psych papers that she co-authored? that would be the leap of faith...
  20. Dr. Yes

    Dr. Yes Shame on You

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    OK.. but I'm still not clear on what you're saying. What was your point? What does that have to do with CFS? In what way was Dr. Vernon's statement, which was clearly referring to an association of child abuse, etc with CFS (based on a badly defined cohort) qualify as "right"?

    :D It's odd that you should be implying that I somehow twist facts, as you know that is the major concern that a LOT of longtime advocates and new patients alike have about you -- that you seem willing to bend facts and suspend logic in order to defend the CAA's positions!

    Actually in that instance I was only noting that your argument was not entirely logical, and pointing out one fallacy. You have not proven your point, you just keep saying over and over that we should not worry about what Suzanne Vernon's views on our disease might be, but just assume they're fine based on her work since leaving the CDC, totally ignoring some of the stuff she put her name on when she was there. And no, that wasn't eons ago (not in CFS time, anyway!).

    Look, the bottom line is that when a researcher is hired as Science Director by the most influential American advocacy organization dealing with my disease, I want to know whether that researcher has any questionable views or biases in her outlook on the disease. If just a few years ago she accepted the CDC's Wichita cohort as a valid cohort, if she accepted the CDC's hypothesis of stress load causing CFS, and/or if she accepted the CDC's hypothesis that childhood abuse or neglect could ultimately cause CFS, then how do we know she still doesn't? Of course she isn't going to conduct that kind of research herself; it's not in her area. But let me try to explain it to you this way - when you vote for a politician, don't you want to know about her/his general political views, not just her/his platform? Similarly, if one's views on CFS have been influenced by a hypothesis that it is primarily linked to stress and genetic factors governing the stress response, one will tend to focus on a certain subset of genes for any genomic analyses, and be quicker to draw conclusions that align with that view. That is just an example of the subtle way in which bias can creep even into biological research.

    I have no clear idea of whether this applies to Dr. Vernon, and what she really thinks; all I have to go on about her views on those subjects is the stuff from the CDC era, because she doesn't discuss them anymore. But I'd like to know, and as she's part of an advocacy group that claims responsibility for advocacy in my country, I think I and others have a right to ask without you trying to shout us down, don't you?

    The same thing a lot of people want. Now that, as you say, Dr. Vernon is free of her "boss", there is nothing to sto her from incisively critiquing the CDC's flawed research that utilized the Empirical Definition, which is still being used by the CDC to this day to marginalize and stigmatize CFS patients, as well as to help bolster their recommendations against clinical biomedical testing which in turn allow insurance companies to deny our claims, AND to weaken the case for biomedical funding of the disease. Of course she can't prevent all that from continuing, but she can help. Her position as a co-author/collaborator in those studies will give her arguments even more weight than other critics. In particular, she could disavow any connection between psychological abuse and CFS that was suggested by such CDC research. Surely you agree with me here, at least... Wouldn't it be great if she did this?

    Yes, I know what you're talking about, but you missed my point. Reading "Playing A Weak Hand Well"; it's hard to understand why she felt it necessary to defend the selection criteria used in those negative XMRV studies. She should have said that they were lousy criteria - the Oxford being even worse than the Empirical Definition, which she later said no one should use - and therefore their cohorts were extremely suspect. She could still be saying that now, as other negative XMRV studies have used questionable cohorts.

    Her criticism of the Empirical Definiton came after patient pressure on the Association to do exactly that. Perhaps that was just a coincidence, though if that's the case I wish she had made the statement sooner; it would have reduced a lot of unnecessary tension with the patient community.

    (Btw I was under the impression that Leonard Jason was consulted by the CAA and was responsible for developing the selection criteria for the BioBank. I made clear that I didn't know this for a fact, however.)

    But since that cohort was selected by the Empirical Definition, how can she say the findings from her studies involving that cohort have significance to ME/CFS patients? The high probability of depression or other illnesses showing up in that cohort would so distort the results of a genomic study in particular that conclusions to well-defined CFS cannot even be extrapolated.

    I think you may not be getting where Reeves was coming from, Cort. I really think he was modifying the term "Medically Unexplained Symptoms", or MUS, which has a specific meaning in medical circles relating to somatoform illnesses (Reeves' favorite kind), to include psychiatrically unexplained symptoms ("PUS"?), a usage I've never seen before... but it would mean that clinically there are symptoms of psychiatric illness without clear psychiatric diagnosis. It's a way to insinuate that evidence for psychiatric disorders is part of the basic presentation of CFS.
    That's how I see his comment.

    You mean you think she secretly thought her boss was full of it? Well, in that case, we can now hear it from her, and it would really improve the CAA's standing in the community if she did so (as I explained above).

    This is a pivotal time in the battle between psychological and biomedical models of CFS, and a very confusing and politically-charged one. It would be nice to finally clear the air and know where everyone stands on crucial issues - in their own words, not those of their supporters.

    In general, I hope you're right, but I am not in a position to make assumptions. Frankly, I am in a terrible position, as we all are to varying degrees. For that reason, it is necessary to raise exacting and critical questions of any group that represents us, as we want the best advocacy possible done on our behalf. We each have so little opportunity to have a voice, and so little energy, that when one of us actually does have questions and concerns it is wrong of you or anyone else to attempt to shout them down.

    I have made these arguments for the consideration of other readers of the forum. I have to leave the issue to others, as I'm supposed to be resting from yet another crash instead of posting all this! Your defense of Dr. Vernon raised an interesting point that, in turn, highlighted a longstanding concern that I and many others have had. I hope that ultimately the CAA, and Dr. Vernon in particular, will address the questions I raised in previous posts.

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