Be wary regional "experts." Part 1 (today at 9:00 AM)
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Memo To Me
Apr 14, 2021, 8:00:27 AM4/14/21
to MPDSU...@listserv.icors.org
It has been my experience that each regional MPD "expert" follows their own path. What is "de rigour" today, at their institution for MPD, treatment suggestion for your MPD will be what is most likely recommended to you. How short are they today finding patients to recruit into X or Y ongoing trials at their institution? Be careful folks. This is not being anti-expert. It is reality, hard learned.
What I mean is that if you go see "expert" A he or she may focus on IFN, B on Pegasys, C on HU, D on putting you into a JAK2 trial.
This is especially so if the expert is an ongoing clinical investigator in MPD related clinical trials. Don't assume that by seeing one or another you are somehow entitled to the expectation of the absolute best option for your long term care and health. They are not the Wizard of Oz.
To my astonishment, many desperate or naive patients, or patients in very poor shape, they allow themselves to exceed reasonable expectations of what any "expert" can actually do for them, and they erase the pressures on these "experts" to recruit into trials, to personal affectations of the day, many "experts" lead very high stress lives. That day, that mere hour that you see them, they need to concentrate on you exclusively. But in reality there are always distractions. Beware of the "expert" who takes your $600 visit to tell you jokes. Beware the expert who needs to recruit an additional 30 patients for this trial or that trial.
\\\\ To post or reply, email to: MPDSU...@LISTSERV.ICORS.ORG ////
What I mean is that if you go see "expert" A he or she may focus on IFN, B on Pegasys, C on HU, D on putting you into a JAK2 trial.
This is especially so if the expert is an ongoing clinical investigator in MPD related clinical trials. Don't assume that by seeing one or another you are somehow entitled to the expectation of the absolute best option for your long term care and health. They are not the Wizard of Oz.
To my astonishment, many desperate or naive patients, or patients in very poor shape, they allow themselves to exceed reasonable expectations of what any "expert" can actually do for them, and they erase the pressures on these "experts" to recruit into trials, to personal affectations of the day, many "experts" lead very high stress lives. That day, that mere hour that you see them, they need to concentrate on you exclusively. But in reality there are always distractions. Beware of the "expert" who takes your $600 visit to tell you jokes. Beware the expert who needs to recruit an additional 30 patients for this trial or that trial.
\\\\ To post or reply, email to: MPDSU...@LISTSERV.ICORS.ORG ////
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