TWiV 119: Science and journalism with David Tuller

February 6, 2011

science journalismHosts: Vincent Racaniello and David Tuller

Vincent and journalist David Tuller converse about the state of science reporting by the press.

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  • Clarekeefe

    from the bottom of my 20 years with the nightmare of ME/CFIDS..Thank-You

  • Kim

    Excellent show and discussion! If only science got as much coverage as the Super Bowl…

  • Billie

    Really interesting discussion, thank you

  • Claudiagoodell

    I actually giggled when Vincent was when the question of possible contamination with regard to XMRV research will be sorted out, and the answer was, “I thought it would have been sorted out last year”. I wanted to jump in and say, “this is the world of the patient with ME/CFS”.

    As you know, many patients have suffered for decades with no answers, simply more questions. Like any healthy active person who becomes ill, our natural reaction is to trust that the scientific and medical community will figure it out in a timely manner. We believe we will soon be fine and be able to return to our normal healthy life. Imagine how shattering it is when neither of those things occurs.

    Thanks for your comment David about how active and productive many patients were before becoming ill, and the fond recollection of that previous life is not the discourse of a malingerer. Irony for me is that I was an audiologist trained to test and discover malingerers.

    Thanks for all you do here on TWiV!

  • Guest

    Excellent and thoughtful discussion. I look forward to more coverage from Mr. Tuller and Dr. Racaniello of the XMRV – CFS story.

  • Matt

    Great show! Thank you to David and Dr R!

    - “The way patients with ME have been treated by the medical community is shameful.” –

    No one can underestimate juts how shameful. It is true that scientists are not very good at communication. Unfortunately the medical community at the heart of the shame, Simon Wessely, controls the Science Media Centre and is rather better at having their ideas, that ME patients are malingerers, communicated. Does Simon Wessely feel bad about it? – is that evil? Is it a mistake? Is the Wellcome trust one of the largest donors to Simon Wessley? These are all questions that need investigating.

    Great news to have Dr Mikovits on the show Dr R, you are completely correct, her findings need peer review. But are they having trouble publishing because of bias of the journal editors refusing to publish or because their data is really not able to be peer reviewed?

    Science is only as complicated as we make it. With ME the problem has and always has been that the criteria for diagnosis are so vague that possibly 90% of patients do NOT have ME is any cohort. How can any scientist find the answer when they are not studying the disease. Only the most severely ill patienst should be studied as those are the most accurately diagnosed.

  • HarrisB

    David Tuller said of those in the Chronic Fatigue Syndrome community, “…these are not malingerers; these are not people who want to get out of work….” That observation is his opinion only and obviously not based on having spoken to everyone. But okay, I’ll take the same leap myself and say the opposite, “…these are malingerers; these are people who want to get out of work….”

    As someone with a history of having been diagnosed with mononucleosis, and later hyperparathyroidism along with a precancerous thyroid, I know what it’s like to suffer fatigue (a symptom of all three). I also know that I’ve heard and seen over the years the stories of those claiming to have Chronic Fatigue Syndrome. From my observation they’re people who have turned out to be not much more than self-indulgent. I have sat back and listened, for example, to someone talk about collecting disability due to Chronic Fatigue Syndrome. Along with that, this person got a great deal of sympathy. On balance, the response to what I was going through was met with avoidance (‘don’t’ want to catch mono’), disinterest (‘hyperparathyroidism – I don’t know what that is’), or downright looks of indifference (‘a lot of people have a “low thyroid”’).

    Have you ever come across stories of those who’ve recovered from all this? Well, I have and have seen it correlated with other recoveries – alcohol; dysfunctional relationships; immaturity. What about people who admit they told the doctor everything…except that they were getting high everyday?

    I’m not saying as an illness in itself that Chronic Fatigue Syndrome doesn’t exist. The jury still seems to be out on that. But I do think the coddling surrounding where it stands right now is a bit much.

    Oh, and by the way, mentioning an author by name – as if that validates everything – is tacky.

  • Chris

    Please let the researchers and scientists decide who’s sick and who’s not. It’s certainly not your anecdotally-minded place. Thanks.

  • Kathryn

    You raise some very valid points, HarrisB. The problem is, the PATIENTS are not claiming they have CFS. The CDC has some very specific criteria (even though they left out some most important ones), and the patients physicians have declared them to have CFS according to the CDC criteria.

    The fact that the CDC’s criteria is flawed, doesn’t allow for thorough investigation of the possible causes of patients’ post exertional malaise, their co-infections and mitochondrial abnormalities is not the patient’s fault. The fact that the CDC’s criteria will allow patients with Major Depressive Disorder into the cohort is not the patient’s fault. (BTW, even a patient with MDD can have CFS, or M.E. as it is rightfully diagnosed; so can people with hypo-or-hyper thyroidism, diabetes, cancer,, etc.) You see, M.E. does not discriminate. If one has infections raging through their body, they feel sick. If one gets a positive XMRV test, they will be infected for life, and only anti-retroviral drugs will control the infections.

    Believe me, no one with true ME/CFS is faking their illness; no one is that good an actor for decades.

  • Kathryn

    Yes, TWIV has been so instrumental in informing the public about ME/CFS and XMRV in particular. Thank you, TWIV!

    If you want to learn more, here’s the Dec. 6 Ad alerting the public to the danger they are in:

    mcwpa.org

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