We have a chance. I just heard back from Dr, Steve Edelman, director of Taking Control of Your Diabetes https://tcoyd.org. They are crazy busy right now, check out their site, but are willing to talk about the forum. I’m hoping that means they are interested in keeping the forum operating.
I think if they are going to help us we have to do the work of forming a leadership team, fundraising to pay for the site snd finding new ways to reach people who are affected by diabetes where they are. This is an amazing group of people that welcomed me when I needed help. I want to keep it going. If you can help please PM me your email address.
Even if TCOYD agrees to help there is a good chance the forum is going to be shut down before it can be transferred. If that happens check in with TCOYD to see if there is any news. Also because of being so close to the deadline I want to make sure this gets seen by @askmanny@Mila@EmilyC@DrBB@CJ114@Terry4@Marie20@Robyn_H@SherryAnn
FUD is available now. Same format we are use to and many of the same people that post here. Lots of good conversations happening there now. Check it out!
Thanks for doing this research! I love being here. I am trying to check out the other place, but I am old and tired and just not much in the mood. On the other hand, I am not about to give up friendships that go back a decade and more. Sigh…….Judith
At this moment I feel that attempts to continue TuD in any form are flawed. I just checked in on BeyondType1 and it seems to me to be completely dysfunctional. Check it out, form your own opinion.
TuD was working but so far as I can tell most of the active users have moved on, maybe to Reddit, maybe to FUD, maybe somewhere else; there are lots of options.
I’m sure some of us will keep contributing but I feel that the best way forward is to suggest other platforms; choice is empowering, change is sometimes empowering.
I’ve been mostly active on TuD for many years. It’s been my observation that this forum has been on a slow trajectory downward for several years. I don’t know what its primary causes were.
I sense that the ensuing generations have long-since moved on to their own online havens. We have failed to bring in the younger generations and that spells an inevitable demise.
I’m not sure that anything could have countered this evolution. It is likely the natural progression of all human social organizations.
It could just be - at least in part - that 'betes management has become easier in recent years and people don’t need to spend as much time trying to figure it out.
I don’t know if that’s a contributing factor, but that wouldn’t be so bad.
Although I have been a frequent reader and an occasional contributor to TUDiabetes, I agree that if this forum’s supporting structure is beginning to crumble, our best bet is to move onward rather than trying to rebuild our own form of TUDiabetes elsewhere. I have joined the FUD discussions and have found many old friends already contributing on that platform. Some of the younger diabetics perhaps go elsewhere, or perhaps they just are too busy being active teens or hard-working young adults to have much time for an online forum right now. And that’s OK, but that means we old folks – and all of our collective experiences and wisdom – need to keep these discussions going so those younger folks and those newly diagnosed have a place to go where they can be recognized, where their concerns are validated, and where they can get genuine acceptance and advice when needed.
That’s another positive way of looking at this issue! It makes sense that people gain a sufficient level of diabetes management expertise that they then just want to focus on other more important things. Thanks for the comment, Eric.
I hope that is the case!! I didn’t join TUD until I was struggling and was looking for help that the medical professionals couldn’t really assist with. That was pre pump and CGM.
I would like to find a meaningful way to turn what I’ve learned about living with diabetes into a message that others, mostly younger, could use. Just figuring out the complicated metabolic process is not enough. Sharing that message in a way that makes it desirable and doable is the hardest part.
I didn’t spend any time. I did read some stuff but it didn’t help. Nothing helped at all until I started reading misc.health.diabetes. That helped.
It’s only easier in that we can achieve far better results with far less effort and far less pain but when I was young I just didn’t give a damn; it was just too much effort and too much pain and, what would I gain?
So, yeah, telling our stories helps but no one reads misc.health.diabetes any more. We read TuD.
Despite my intermittent presence and my very strong opinions I do believe that everyone here is helping everyone who happens to notice TuD. Not didactically telling people what to do, rather helping them do it. Help needs no whip.
I think that there have been phases of exploration that we have gone thru as a community. The community changes around those enthusiasms.
For example, there used to be a lot of technical problem solving on this forum. It’s where people congregated to discuss technical details related to medical devices.
I refer people here. I bump into people all over the internet asking for help. I refer them here. I don’t know if they actually come, or if they just give up.
For example, here’s a dude who is trying to do technical problem solving on LI. He asks ALL the TIME. No one on LI can fix this. He needs to talk to us.
Maybe he’s got education in mind. I asked an endo what they tell their patients when they prescribe a CGM for the first time. They said “nothing”. Not everyone with a 10 day G7 has read page 161 of the manual where dexcom says they only expect 80.5% of sensors to last for 10 days. Personally I am still working on finding a good way to talk about CGM accuracy.
I’m here to connect with people. Where else am I going to find people that agree that “make your own yams and bring them to christmas dinner” is rude when the plan was for me to make candied yams for everyone just not using the canned stuff drowned in syrup. I was left holding the bag. Of yams.
People have ‘goals’ on LI, other than to treat their 'betes. But I do talk to a lot of diabetics there. A lot of them are social media 'betics or policy cats.
LI is for marketing. I use it to spawn uprisings in the doctors and to talk to the voting public from industry. There’s actually a fantastic network of healthcare reform peeps who I have forced my way into in order to ensure that there is some patient voice there. For example, you go to LI when you want to talk to Mark Cuban, talk to members of the large GOP think tanks, fight with pharma and PBM lobbyists, etc. I run marketing there for diabetic perspective and patient perspective, more broadly. I troll UHG there. Legislative staffers are there. I think it’s more fun and productive than looking for a job on LI. I’ve been having the time of my life there for the last year, but I haven’t found a job yet and I might be blacklisted from industry. It was totally worth it. The community can see that too.
I found all the healthcare troublemakers and I ran to them with glee in my heart. It’s been great. I’m tearing up this town by just saying things that are true. When the doctors are rude and dismissive, everyone can see. They do their own bad PR. I root out decent leadership in their community and those names travel back to our policy people among the pharmacists and diabetics. I just show up and do my little diabetes dance for healthcare disruption. It’s fun. I’m good at it.
Sometimes I post links back to stuff you all have written on Tu so that broader perspectives from the patient community get incorporated into the discussion. But I really like being able to advertise how proactive and engaged a community we have, compared to the doctors. I like to be able to show how we troubleshoot medical devices and support patient care. People don’t know that. That’s what I’m really trying to demonstrate in my response to Kliff, but also to everyone else. I can really celebrate our patient community and brag about it, in front of industry. I provide concreate examples of industry deficits and show how we overcome those problems as a community.
I just got a comment “like” from Mark Cuban. That’s points for the diabetics. I tally points for patients vs the pharmacists vs the doctors vs the lobbyists. It’s a fun game that I play.
