What are we reading?

meyati

His name should be Go bye bye

Carool

Molly72, I like XXXing. I typed the Xs myself.

If Colby is too busy to moderate, I think we can all understand — but then he should find someone who can moderate and ensure that basic things — such as questions being posted under Question, not on the person’s wall — are taken care of. Several of us posted questions; they all ended up on our own walls, where no one else knows to look.

meyati

Legaljean got some BS answers from him. He's like a 13 to 15 year old. I know because I taught Freshman health science and at a middle school for awhile,, he is bull shatting . He says he's busy with rare patients--Hey- everybody -- I am a rare patient--Like I went into Dr. Garg and said this is like Gorlin's Syndrome. I explained what Gorlin's was- 4 years ago-he said-- They decided you're right- they are labeling it as in the Gorlin family. That is genetic, but I do not have the malformation on my upper gums-lips- sort of like a sheep- Nor do I have pits in the palms of my hands or the bottom of my feet. Anyway---I do get regular updates for surveys with researchers. I received 4 or 5 last week.

Emails are sent out. If a person wants to do the survey they reply. You enter the data- cancer type, stage-how long it took to diagnose, when you ended treatments- and a machine says-- Thank you we'd like to interview you more. Or thank you but you don't qualify.

Colby has never done very much for rare patients. This year is the first year I heard of him. I get emails from somebody else, and have been.. I think that there might be some inflation surrounding Colby

Carool

Meyati, Greg was alive until late 2020 (I think it was), so there was no need for Colby, so of course you (or anyone here) didn’t hear from him.

Let’s see what happens. As I said, we should understand if Colby is too busy with work, etc., to moderate. I, too, have felt angry at him, but I realize, from what legaljen wrote and her tone, that anger isn’t helping.

meyati

I'm saying that his involvement with Rare Patients is a false flag or at least overstated. I have had contact in various ways with the moderators of Rare Patient-by Email and phone, as they wanted to know what surveys were like, if I got paid.

I did some checking on the What Next site last night. On paper Colby is good for WN. He's updated videos that show how to use the site better. He's scored with getting commercial support and has a link to sell products. He has better videos from some patients about their specific cancers, and has a tutorial for patients to make their own video. Meanwhile, I couldn't post a pic on PINUPS. I can't post a question.

meyati

Melanie Havert is part of rare patient- she sends out newsletters for Rare Patient Voice- and I do have regular contact as I'm on some rare patient panels. MH handles the Rare Patient YouTube affairs.