Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

How's the PR this time?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by usedtobeperkytina, Jul 4, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    I just wanted to give my review of the PR with the latest events.

    First we had the rumor of a pulled press release from CDC. Seems what was pulled was the study. If there was a press release with it, it was not just temporarily pulled but permanently pulled. So, this rumor was close if not accurate. Kurt, you get a "B" as far as information. You even came back and said your sources were still telling you they were on hold, when others were saying they were approved. You got you some good sources. You were right. I am not grading you on other comments or opinions, since I don't read them all. But on providing reliable information about the studies, you get a "B". I would give you more if you would give us more information.

    Then, we had some very good journalism. Ortho, WSJ, Mindy and Hillary have been pursuing these stories and as far as I can tell, all have been correct, except possibly minor points. Hillary said her sources said the studies were in print, or at the presses, or something like that. Maybe it had gone that far and pulled from the printer. We don't know. So she may still have been exactly accurate or her sources went just a tad too far, when actually they were approved for print, but not at the printer. The rest, right on target. Although, I wish Mindy would give something more than "my sources," such as "a source that has seen the study" or something to show her sources are credible and firsthand, even if she can't give the name. Sometimes she does, but other times she just says, "my sources." But, she hasn't been wrong yet. So....

    Even though now it seems the NIH / FDA study is not approved, it seems clear at one point it was. Either these journalists have been working very hard to get some people to talk or there are lots of deep throats, no, even more than that- Even deep throat didn't come forward, he had to be asked first. Don't know if the sources are calling them or if they had to do a lot of massaging to get it out of them, but the result is that these journalists have served the public very well with accurate information and getting the info out, all the while doing their watchdog to the government duty. I'm proud. Journalists, you get an "A". (can't quite go for A+)

    The unnamed sources have also done the right thing. Clearly this was an abnormal act about a matter of public concern. So, some people who were mad or who had a conscience talked. Good for them. It was a risk for them. You get an "A." If you had given your name to journalists, you would have gotten A+.

    Also, DHHS, while I understand wanting to get a united story from the two organizations in the federal government, it is not the way scientific process is done. Since they were approved, then it should have been left alone. If the news media wanted to report on it, let them report the way it is, two studies, conflicting results. Pulling peer reviewed studies does not play well among other researchers and patient community, evidently. So you get a "D". Only reason it isn't an F is that it makes common sense to want to get both studies to agree or understand differences before published, but it is not common practice in scientific research.

    The journals. They get an "F". If your reviewers looked at the study on its own merits and saw it was ok, then you should have published no matter the request from those researchers or DHHS. Only if fraud was suspected, and it wasn't, would you pull it at that point. It takes courage, and you failed. Lay media had to step in and do what you failed to do.

    Alter, well, you should have known better than to reveal info of your study at a conference, even closed door. Too high a profile on this topic, it was bound to get out. And there you were, being asked to confirm what obviously you said when lay media asked. And then, when it was pulled, there you are having hung yourself out there. I know it is common to reveal unpublished stuff at closed door conferences. But XMRV and CFS is different, highly political. So it was not good to reveal the results...... that is......unless you didn't mind or even wanted it to get out to public before publication. I don't know how to grade you because I don't know if you are actually doing this on purpose or if you didn't mean for it to get out. Either way, your quoted, attributed comments after the conference have been good. If this was a mistake from being naive about CFS, you get a C. If, though, this is all part of a master plan to manipulate things, you might should get an "A".

    Then we had the blog from Vincent Racaniello. Your words were strong, but you reasoned on the scientific process for discovery. Spot on. You spoke out courageously and without attacks to clutter the clear message of letting the scientific research speak for itself. You get an "A+".

    CDC, F-. Still, your research methods on CFS have been lacking to say the least, but you speak with such arrogance. You have again squandered an opportunity to gain some good will and trust. But what's worse, now you have not only lost the trust of the patients and other CFS researchers, you have caused a conflict with you and FDA / NIH and other researchers into XMRV that are new to CFS. And the way this was handled just gave gasoline to the conspiracy theories. The problem is not the negative results of the study. This grade is for PR. And, you failed.

    WPI, this time, you guys got it right. The statement you gave in response to the CDC study was perfect. You did not attack or criticize. You simply stated: "This is not replication; it was done differently." Good for you. Since you are on the hot seat, it would be very unseemly to be criticizing others and imputing ulterior motives. Stick to the facts. Speak from a position of strength and confidence, knowing that other studies will ultimately prove you right in the end. And as far as I am concerned, once Ortho put out their press release, then there is no problem your just linking to that on Facebook, embargo or no embargo. You didn't put it out or reveal anything new about it, Ortho did. Once the genie is out, can't be put back in. I understand that you can't reveal info yourself. But I see no problem linking to Ortho without any comment. You get an "A". Would have been an "A+" if not for the on again, off again postings on Facebook and the Website.

    Dr. Vernon. Now, Dr. Vernon is not actually doing research into XMRV. She is the research director for CAA, which involves managing the research sources of CAA, but others actually do the research. She and CAA have not made a claim. So she has no need to defend anything concerning these studies, XMRV yes or XMRV no. She works for an advocacy organization. So her role is to advocate for solid research and more of it. Her statement after the CDC study does impute ulterior motives. Since there has already been a break against CDC, there is no relationship in jeopardy. If her comments about the methods are correct, and that is Virus Research 101 knowledge, then her comments are just fine, including the one about their not wanting to find it. Although, I am still not sure of the general population prevalency quote, she evidently has some basis for that. She is just the one to make such comments. (Better her than WPI because her research is not being called into question. She can speak from someone without a vested interest in the outcome on XMRV, just wanting the truth.) She has the scientific knowledge and the independence to the controversy to say what many patients suspect. She rightly points out the problem of everyone using differently defined patients, but not giving enough details in the studies of what kind of patients are used. Her comments were more technical, which is ok because other researchers need to know the flaws. CAA, A+ for you this time.

    And the valedictorian of the PR class this time is Otis. The statement, "Let my papers go," is a strong soundbite that reveals the very valid desire of patients, with a little bit of humor. You get an "A+" with bonus points.

    Tina
     
  2. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    9
    Tina, I like your analysis. Sure you don't want to promote this to an article? take care, J
     
  3. alex3619

    alex3619 Senior Member

    Messages:
    12,111
    Likes:
    32,600
    Logan, Queensland, Australia
    Hi Tina

    Quite right, except that the DHHS motives are unknown at this time, or what is actually happening. They could be doing something that will score them anything from an A to an F, depending on how we read the situation. We really need a whistleblower inside the DHHS, although even then we would be unsure about how accurate the leak is.

    Bye
    Alex
     
  4. Lynn

    Lynn Senior Member

    Messages:
    357
    Likes:
    229
    Wow, I think you are spot on! Please do promote this to an article. I think everyone would benefit from reading this.

    Thanks for your insight.

    Lynn
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    I edited it a bit, adding about the blogger and Otis. I tried to promote to article, but I don't have the authority to do that, evidently. If someone else wants to, I would be honored.

    Tina
     
  6. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,429
    Another vote here for promotion. Please, will someone with the authority take this in hand?
     
  7. gu3vara

    gu3vara Senior Member

    Messages:
    339
    Likes:
    51
    Yup, make this an article, pretty good read, thx!
     
  8. George

    George waitin' fer rabbits

    Messages:
    851
    Likes:
    80
    South Texas
    Exellent, tell Cort to look and see about adding it to the articles section. I give it 4 paws up. I so agree about Otis's quote, I can almost here the strong bass singer. ( big grins)
     
  9. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    17
    Vancouver Canada suburbs
    "woof" "woof"
     
  10. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    Maybe I need to start a blog. LOL. Is that what we need? Another blogger about CFS.

    It would be fun though. If not a blog, what publication would be interested? Hmmm, is there a journal that reports on science PR or science news media? Anyone interested, let me know and I will clean up for publication standard for public in general.

    For the mean time, I will do another one here when we have more stuff happen.

    Next time it will be more professional, using last names, etc. This was intended for the message board, so it was a lot more casual.

    Thanks guys. I will keep it up.

    Tina
     
  12. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,429
    Please do, Tina! It looks to me like you have excellent journalistic skills that could be put to good use. A little digging into the CDC/NIH paper matter could get you an article (or series of articles) that might sell to some of the popular science journals (as well as some of the professional ones). That would really get our message out there in addition to showcasing your skills. :D

    The history of events from someone who knows something about ME/CFS would be terrific. Everything I've seen so far, even if fairly objective, clearly misses points that are obvious to the few of us in the world who understand, say, the issue of cohorts in ME/CFS.

    The CDC paper has what look to me like logical/common sense issues that could be addressed, to say nothing of serious science (I know nothing about bio-sciences). Dr Vernon discussed some of them, but a layperson's version, written in a more journalistic form, would be very helpful, if not as marketable, perhaps. As an article here, written in your straight-forward and fair-minded manner, might get some serious recognition as the story grows. :Retro smile:

    Even an article outlining the questions -- not confrontational ones -- that ME/CFS patients would like to ask the authors of the CDC, would be interesting and useful.

    Please! We both need and enjoy your journalistic skill. :Sign Please:
     
  13. MaryAnn

    MaryAnn

    Messages:
    44
    Likes:
    0
    Great reading Tina and you too get an A++!
     
  14. kwietsol

    kwietsol

    Messages:
    40
    Likes:
    0
    Tina,

    I always get a lot from reading your posts and I think it would be a wonderful thing for our community if you started a blog. As far as I know, no one is blogging from a CFS PR perspective and you, given your knowledge, interest, and skills, would be the perfect person to do it. I'm sure you would come up with a lot of angles. Of the top of my head, I can envision you writing a story about the deficiencies in the traditional media that have resulted in them NOT covering the CFS saga, big as it is. I can also see you writing more about what we could do as a community to create more effective publicity. You could also strive to become a consolidated source for the mainstream media on the day-by-day unfolding of the CFS story. Wouldn't that be great for us!

    Hope you feel you have the time and the energy. If you do, please go for it!
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    Gosh that sounds like fun, reporting or commenting on news media coverage and PR tactics related to CFS. Likely wouldn't have been much to say, until XMRV started a flood of stuff. Although, looking into why there isn't as much news media coverage would be interesting as well.

    And I agree, I can better judge because I know what the standards are and I am a patient and thus can see the effect of the PR or reporting.

    Right now, I work five hours a week doing features and other fluff stories for another newspaper. And I work one hour a week managing a Web site.

    And I am working on writing a sign ordinance for a city right now. But I work that around other stuff. Thankfully, most all the time, I end up working between 10 and 15 hours a week, most of it from my recliner. So the times when I have five days of brain fog, I can work around it.

    I just agreed to help a non-profit agency write a brochure. (no pay, for CFS).

    I have to put priority on things that earn income now, though. But, how can I easily set up a blog like that so I earn income doing it? I see Mindy is trying to get Google ads. Did she succeed? How hard is it?

    I do enjoy this, and I do agree there might be a niche for this type of thing.

    Either way, if I don't get a separate blog site or something, I will post something similar here in the future.

    Thank you all for your encouragement.

    Now, maybe we need someone else to do a blog on how I do on my blog. LOL

    Tina
     
  16. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Messages:
    191
    Likes:
    315
    Matlock, Derbyshire, Uk
    Well done Tina

    I'll give you an A+ for this as well Tina. :D
    It's a welcome addition to our community discussions and I hope you'll repeat it in the future.

    Regards,

    TGOP ;)
     
  17. grant107

    grant107 Jean

    Messages:
    92
    Likes:
    0
    Ormond Beach, Fl
    Tina, do you really think Alter should not have allowed his study to be leaked? I think it is great he did because otherwise it would have been easier to cover it up. He may have done it on purpose knowing the problems that would occur from the conflict of the CDC study.
     
  18. Rrrr

    Rrrr Senior Member

    Messages:
    1,544
    Likes:
    657
    tina,

    EXCELLENT PIECE!!!! do start a blog.

    rrrr
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    well, from the perspective of how it made him look and the position it put it him, I would say it was a mistake. But in my article, I mention the idea that maybe he is doing these things on purpose to manipulate things.

    First of all, it is common to reveal info at closed door conferences. WPI revealed their first XMRV info in a closed door meeting of many scientists before their paper was published. But at that time, no one knew, so no one was asking, trying to find out info.

    But he released his info in a closed door conference at a time of high interest. At that time, May 26, there was no hold on his study. He must have thought publication was imminent. So while it might have worked out, had there not been a hold put on his study two weeks after he made his revelation, then it might have been kept quiet, as intended until publication. But the hold brought greater pressure at a time that journalists are knocking, calling, e-mailing, etc. for any news about XMRV and CFS. Thus, the leak.

    The atmosphere made it risky to reveal the info ahead of time. It might have worked out alright, but from the perspective of protecting the integrity of his work and his reputation, it didn't work out. He was put in a very awkward position of having revealed published info and news media wanting him to confirm or deny what he obviously said. In fact, many said it might have even risked whether the study would be published at all, because it was out in the press. If he had not revealed it in conference at a time of high interest in the topic, there would not have been the risk to the publishing of the study and he would not have had to deal with lay press taking over control of the situation, to the possible embarrassment to him.

    Much of a PR grade is based on the results. I might plan a great promotion with a horse wearing a funky outfit to promote something. Great idea. But if that horse gets spooked, takes off into the crowd running wildly, knocking over children, then it doesn't matter how normal the plan was or whether it made sense or was a good idea. The results for positive promotion were bad.

    For Alter, the results weren't good. But, he has handled it well when reporters asked him for quotes after the May 26 conference. In this case, I give him a "C".

    There is the other idea, that he is masterminding a strategy to expose the political interference and create demand for his study to be released. With so many unnamed sources, there is no telling who is doing what. Could he have tipped off Ortho to begin with? In that case, I give him an "A".

    We will have to see how it ultimately works out for him and his study. That is why it was hard to grade him at this point.

    Tina
     
  20. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,654
    This org (the official Dutch Blood Services/regulation) had put Dr Alter’s power point presentation on its site.

    Sanquin.nl, the Dutch organization which officially regulates the Dutch blood supply.
    http://www.sanquin.nl/sanquin-eng/sqn_sanquin_eng.nsf/

    Blood safety/transfusion Conference Zagreb 26th June: Dr Harvey Alter, Power Point Presentation "Surveillance and screening of Blood Borne Pathogens" on Sanquin nl. Official site (Sanquin is the official Dutch blood services/regulation org):
    http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/0/cbfb86b6bbdcc818c125706600483652/$FILE/1%20-%20Alter.pdf




    Page 10
    Comments on the Agent Du Jour -XMRV

    •The data in the Lombardi, et al Science manuscript are
    extremely strong and likely true, despite the controversy.
    Not only have they detected gag and envelope XMRV
    sequences, but they have infected prostate cell lines and
    recovered gamma retrovirus particles and have transmitted
    XMRV to rhesus macaques by the IV route and demonstrated
    infectivity

    •Although blood transmission to humans has not been
    proved, it is probable

    •The association with CFS is very strong, but causality not
    proved

    •XMRV and related MLVs are in the donor supply with an early
    prevalence estimate of 3%‐7%.

    •We (FDA & NIH) have independently confirmed the Lombardi
    group findings
     

See more popular forum discussions.

Share This Page