Youve broadcast a rather broad solicitation. What type of input do you seek? Are you looking for general disease information, specialists, support groups, etcetera? Im sure that you will receive a host of very helpful responses from fellow members by narrowing the scope of your request.
Do not overlook the resources you may already have at hand. If you currently use an OP, you have a physician, they are your doctor, youve paid them, and I would not hesitate for a moment to contact mine by either phone or e-mail with questions about my health. A licensed physician, in addition to those who may have first-hand experience with your condition, is going to give you much more reliable information than what may anecdotally be available elsewhere.
Not to belabor a point (and this is NOT directed at you), but it is essential that patients view their online doctors as healthcare professionals. In fact, the perception that telemedicine providers are merely prescription generators and NOT otherwise providing legitimate healthcare is the single most effective argument available to those who seek to inhibit its practice.
Although they go to great lengths to be clear, and rightfully so, that they are not anyones primary care physician (PCP), acknowledging the existence of a legitimate provider-patient relationship is the entire basis by which they validate the medicine they practice. As with any doctor, including PCPs, short of alienating them, I would not hesitate to ask for information about my condition and persist until I receive it. Is this not the reason for telephone interviews and medical questionnaires?
I think its important to shift collective thinking and resist those who seek to restrict or eliminate telemedicine by refusing to feel or behave as if something illicit is occurring. The very worst thing anyone can do to preserve the practice of telemedicine and the accessibility that is important to so many is to view OPs as mere sources of prescriptions.