Great work, Ed. It is extremely important to clarify what has actually been determined by melanoma experts as to how any test or treatment will really impact clinical decisions and the lives of melanoma patients. I fear that MRF is failing to recognize their role in regard to this forum; failing to note the perception of patients who think that what MRF reps say and publish is tantamount to an endorsement of what the patient should do; and failing to draw a clear line between an option to participate and helping promote the goals of a company who will be making a great deal of money on the backs of melanoma patients using a test that has yet to be found valuable by melanoma experts. This survey is clearly a marketing technique to get out name recognition and sell this product. If MRF can’t recognize that, I don’t know how they can call themselves patient advocates. Finally, this forum has never been the place for ANYBODY – MRF representatives, company goons, or anyone else to butt in. This forum is for patients and caregivers. PERIOD.
Given that we have all learned to negotiate this sadly “updated” site, we can surely manage to look at other pages of the MRF website for these grand offerings should we wish. We don’t need them SOLD to us here. Especially by those whose actual paying job it is to advocate for our lives and the existence of this space.
This is a place that has afforded comfort, accurate information, and comradery to many over a great number of years. It has been heartbreaking to see participation dwindle. I fear that continued efforts like the unabashed promotion of one company’s product will only fuel more decline.
Hang tough peeps. Search for complete, authentic, accurate answers. Read critically. Make the decisions that are best for you and yours based on what melanoma specialists recommend rather than the hot new thing one company wants you to purchase. Your lives depend on it.
Ever yours, celeste
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