by xrn » Mon Jan 08, 2007 10:58 am
Dee, thank you for this reply.
(quote) Jeff, my intention was not to "carp" at the original poster, but to point out the all too familiar attitude with which the doctor responded to the information supplied by the patient. (unquote)
Ok. first I want to apologise if my tone sounded as if it was a personal attack... it was not but I do see how it might have appeared as if it was. I do think the less positive aspects of a site like this do have an impact... and that impact is, often, to encourage selective hearing and visual defects in those that would prefer not to know.
(quote) Even if answers must be kept "simple" due to the scope of the audience, this answer was a little "too" simple and presumptive. Assuming that the problems suffered by the patient could only be due to Rhabdo is misleading. (unquote)
That assumption was not my own take on the advice tendered. I saw it as an acknowledgement that rhabdomyolysis was a known and significant adverse reaction with statin therapy. Additionally I saw that the doctor was using the term rhabdomyolysis more widely because it could be applied to muscle tissue breakdown (with the concomitant production of toxins) from numerous causes. It was that very point that had led me to look at what the term encompassed and it surely covers way more than statin influenced muscle tissue breakdown.
(quote) Imagine a reader that has the same symptoms, makes the possible statin connection, calls his doctor concerned with Rhabdo, the doctor orders a blood test, test is normal, patient is told his problems are not statin related, patient continues on statin causing further damage....that was my concern with the response by the doctor. (Again I would direct you to the sources provided by Fran.) (unquote)
I do see the point you are raising and it should be addressed. My view is that it is a failure of the sytem to put sufficient information in the way of the patient at prescribing time. The honest and open discussion of risk and benefit is just not a commonly heard dialogue between the expert medical practitioner and the patient when a new treatment is being proposed to address a new medical problem for the patient.
The unknown patient writing for medical advice to anonymous sources... is really just a symptom of how far away from actual patient care, the medical model of healthcare has drifted. Every person is at a different level of knowledge with respect to their personal understanding of their symptoms, the causes and the likely remedies. Your knowledge made you view the advice one way... my knowledge makes me see it another way... the newly diagnosed patient will see it another way.
Blanket approaches to individual problems will not work because they will be inappropriate for the majority. Far better to have an agreed pathway that everyone can follow at their own pace. the medical profession is not that good about having an agreed pathway because it impinges on the clinical competence of individuals. Add to that the issue of patronage that I have alluded to elsewhere and you will see why the profession takes the line of least resistance.
(quote) As for etiology...well if you are waiting for a book (to take to your doctor)mapping out the etiologies for all the adverse statin effects and all the other possible causes for such effects, I fear you will be waiting a mighty long time. (unquote)
I am saddened to learn that. I was not intending to have a recipe book to take to a personal medical practitioner. (on the grounds that if they do not understand what they are doing then I will be unable to teach them anything). My crie de coeur was more to do with the squandering of a valuable resource... in terms of the collective experiences here and bringing them to a wider audience so that change can be initiated.
(quote) For most of us our personal tragic experience is enough. Several months ago, I did a quick count of only 4 statin forums and found over 15,000 postings. For every posting there were many views. For instance one thread with 9 postings had over 2200 views. That tells me that the statin problem is "major". (unquote)
Personal tragedies are devastating... there can only be one way forward at this time and that is not to deal with the tragedy on a personal level exclusively and then stay silent. I do understand what that means in personal terms but instead of taking personal details at registration, what about personal medical history taking (voluntary of course) and maybe a well designed pdf form that is an anonymised tick box document so that it would be amenable to proper analysis?
Effectively one would still only be asking the questions (and the help to complete them) at the time of registration. If you say that is too much of an imposition, I will accept that... it does seem to be missing an opportunity for the little guy to make the big guy sit up and actually take notice.
(quote) As I have proposed before, what we need is a colalition pulling together victims, doctors (such as Dr. Graveline, Dr. Phillips, Dr. Golomb) media resources, legal experts, etc. We need ONE CENTRAL PLACE we can join, form committees and start counting heads and organizing an informational campaign. We could also gather donations to fund further independent studies. (unquote)
I understand. My sense of that is because it does take funding, that is the wrong place to start. The collaborative end of it is important and maybe the good doctors would help people here to set up an ongoing collation of anecdote in a such a way as to be free from taint. In that way it could be more readily accepted by the medical community.
(quote) When O.J. Simpson was going to publish his "How I Did It" book, it only took a matter of days for public outcry to get it stopped. How was this accomplished? PUBLICITY!
What do we need? PUBLICITY! If just one major program were to expose the extent of the problem, there would be a snowball effect as people start making the connection. Just imagine! (unquote)
Yes, I agree with you, Dee, that publicity is important. That does not speak to my point about how the site is seen by the medical orthodoxy. Indeed, your example of the odious OJ Simpson is apposite. Juxtaposing his own exploits, with those of the medical establishment, the pharmaceutical industry and statin therapy is an unfortunate example of unintended hyperbole. That is the precisely the sort of random publicity that will prevent the medical profession from embracing this site as a very valuable resource for patient education.
(quote) We can whine, complain, rant and rave, and yes "carp" on these forums, but until we organize, we will not accomplish much. (unquote)
I agree with you again, Dee. My question is what steps will we now take.
kind regards,
Jeff