Changing the Forum

Community
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They closed comments, so I have started a new thread. I realize things change and I realize monetary decisions are made for the benefit of things to keep going.

But separating and making us pick type 1 or type 2 is such a huge mistake in my opinion. I was one that was misdiagnosed for over 8 years and over 30% still are. I would have stayed on the type 2 forum without the help the type 1 community gave me in dosing etc. I always bring up the possibility when things don’t make sense you could be a type 1 instead, and sometimes it ends up a person has been. They won’t be reached besides various others for various reasons.

But also there are insulin users in both communities. The type 1 community has a tendency to have more people that have knowledge of adhesives, pumps, even containers for glucose support and misc other things a type 1 has to learn early on. We all are different and can have different responses and finding that person that has the similar experience can change everything. Face it, endos, pcp’s are taught a general concept of what to do, but we all individually have to deal with a myriad of situations.

I believe for the wealth of knowledge it can supply everyone that having one forum with the individual designation of type 1 or type 2 in our name or subject is the best way to reach all concerned with any question.

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I agree Marie, but these kind of issues tend to go round and round and organizations are not good at making these decisions.

Your long years of misdiagnosis mystifies me. Clinicians have a lot to answer for. I glad that you persisted and finally got on a treatment track that makes sense to you.

I don’t mind participating in a forum that includes T2Ds. We have some overlapping issues and at a minimum they share in our humanity!

This deal is done and we can’t go backwards. What’s important is that we can now choose to participate online at a community consistent with our values.

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I am not sure if there is another option for it, but I clicked on both the Beyond Type 1 and Beyond Type 2 links that were given. I thought it would be good to at least check them out.

But as far as I can tell, you can’t even browse any discussions without joining. Is that correct?

It’s kind of odd. You can read all kinds of posts at places like Reddit and stuff like that, without ever joining. You need to join them if you want to post, but at least on those, you can read stuff and see if it’s something you might be interested in.

I am not going to join a community that I can’t even see.

Lemme know if I missed something!

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Will the forum still be searchable/viewable? @rarabt1

I look back on and reference these pages all the time when I need to look up specific diabetic writers and policy dudes or info.

There is so much history and technical information here that could be lost.

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Like I have said since the “news” do we have any input into this decision? Why are members not consulted? What financial ramifications are there in continuing the Tu Diabetes forum? Who made this decision and what is the real reason??? Can someone inform me whether it’s about money somehow.

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I totally agree with you Marie and you have helped me a lot since I was able to ask question and post only 5 months ago. I was misdiagnosed for 2 years and only my dietician advised that I get tested the C-peptide and Gad antibodies test as my numbers were so high taking 7 meds.

You have been around for a long time……who controls this forum and who makes such a decision with no input from members??? Is there a “administrator” of the Forum and what was reasoning about this decision? Thanks if you can answer because everyone just seems to be quietly accepting this change.

  You have been
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We need to oppose this and ask why the change is being forced on us. Do you know who is in “charge” of this decision?

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You can head over to FuDiabetes. Don’t worry, @Andrea8. It will be OK. These types of issues have popped up before and that’s why FU exists. https://forum.fudiabetes.org/ There are lots of our users already over there. It was build by TU users.

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If you want to know more about Beyond Type 1 (BT1) and how it took over this community in 2017 from the original Diabetes Hands Foundation (DHF), here is a thread from June 2017. This post contains a video that features Manny Hernandez, one of the founders of DHF. The video contains the background story of how the DHF started in 2008 through its transition to BT1 in 2017.

Perhaps this recounting of the TuD history will answer some of your questions. I’ve been around this story for much of it. We are dealing with not-for-profit organizations, both DHF and BT1. My assessment is that there is not much we can do about the present situation except decide where we are going to contribute to this community going forward.

I’m sorry that you only became involved here in the last year or so. I am glad that you have benefitted from the collective experience and wisdom of this group. Luckily for us, TuD is not the only forum that can give you a healing community.

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Sad. Very sad. I don’t like any of it. Best regards to all…..Judith in Portland

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I believe you are right @Eric2 ! It looks like you have to join to see any discussion. That in itself is sad considering all the people that read this forum to gain information and don’t join, or they take years to join and then post.

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Yes! Manny and Andreina wanted us to be a resource for the Community of Diabetics, and all those touched by diabetes–through their loved ones.

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Even though I am T2DM I joined both of those some time ago. Unless there are changes, I don’t find them helpful. I prefer a forum like aat FU and here at DU. Beyond Type 2 seems more interested in handing down information from ADA?? I guess. I have learned and been helpful from a forum of fellows with whatever type of diabetes mellitus one has.

Yes our root causes are different and the therapy as well, but we share everyone of those sucky complications that hopefully will not affect us.

So Beyond Type 1 and 2, OKAY, what about Type3c Pancreatogenic DM in which both the endocrine and exocrine pancreatic functions are diminished or eliminated? Are they going to find helpful information in the Beyond Type 1 site? These people have it rough as they may need supplementation of several of the 6 hormones secreted by the Islets and have to take oral digestive enzyme tables so the can digest carbs, fats and proteins.

Then there are the monogenetic DMs.MODY and Neonatal. Neither of which are T1 or T2.

I was diagnosed 35 years ago as T2DM. After 10 years of near perfect management with diet and exercise, I learned the truth about the disease, IT, IS. PROGRESSIVE!

I’ve been through several stages, 1st added Metformin, 2nd added Lantus, 3rd MDI, 4th on a pump. My Beta cells are nearly completely wore out. I still have cellular insulin resistance, the only way for that to go away completely is reincarnation.

That brings up a subset of T1DM. This was called double diabetes, but it now called Type 1 autoimmune diabetes with insulin resistance. These people are more akin to me who is insulin dependent with insulin resistance.

I am a firm believer in regardless of type DM, do what is proven to work for you, i.e. Take Control of Your Diabetes, and that we can learn and pass on our own experiences in these online forums.

BTW my name at FU is Carlos Luis. Why, I don’t know, My 1st name is Charles and 2nd is Luis. I go by my second which is the Spanish spelling and I like the sound of Carlos. My wife if she was still with us would say,”You are really weird sometimes, Luis.”

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I created a post of FUD that shows how we use the wayback machine to access old TUD posts so everybody knows they are there if they needed them.

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I just checked archive.org and I think the links may be blocked. IRC blocking is something that the wayback machine supports, along with most spiders, and is conventional. Technically it was designed to block download of megabytes of image data but I suspect it has become a consensual privacy thing (i.e. loads of countries have complete downloads).

@Eric2, this is why I don’t normally post in the FUD Lounge; I don’t want to speak anywhere in private. It’s also why I typically don’t respond to PMs; I have to really trust someone to have a “private” conversation.

I don’t think you missed anything, but you might be starting to think like I do :slight_smile:

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I don’t know why BT1 is pulling the plug on TuD but I do know that I am grateful for the support they have given us up to this point. Without them this site would have folded 7 or 8 years ago.

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How much do you think it would cost to fund? A lot?

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Hosting plans on Discourse are not cheap for a site as large as TuD. I believe that Tud is hosted on their Enterprise plan. Here is a link that shows their pricing schedule.

If you’re going to successfully run a site like TuD you will need more than a hosting plan, FuD is lucky it has members that are tech savvy but if you want a community that is really dynamic you will need an organization with paid staff that can provide more that user-based content. TuDiabetes had this in its prime.

In its prime TuD had its discussion forum we see now, it had a blog section and chat. The Diabetes Hands Foundation provided guidance and content such as diabetes news and interviews with industry and members of the overall diabetes community. The Ning platform that hosted us at the time was more than a discussion forum, it was a social platform.

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Holy cow.

I was looking for a blog section to achieve, but I couldn’t find it.

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Archive now or forever lose your speech.

Belingcat is used by news organisations across the world, for example the BBC. The software is FOSS (the first link) and I guess that many governments might also use it to download data for internal policing and future espionage.

Unlike hosting archiving is primarily a “download” operation. Many of us in the US have connections which are really fast to download, well, at least NetFlix, but lack “upload” bandwidth. For example my connection is currently 300Mbps download (it’s clamped, according to the ISP, to 400Mbps) but only 10Mbps upload. Those numbers mean that hosting is impossible, but download is certainly possible (for a small number of web sites that are not graphics heavy).

I’ve seen over the years that things get lost. That certainly happened to lots of stuff before the wayback machine. However archival is only half of the problem and maybe not the problem at all here. It would be sufficient to just “freeze” TuD as is at some point and then it is probably possible to get archive.org to completely spyder it.

FUD seem to have expressed willingness to handle more members and deal with issues that are found and FUD is a lot, lot easier transition than the BeyondTypeX stuff. I can barely use that; it would be a massive learning exercise for me whereas TuD and FUD have minimal differences (missing “preview” window on FUD for example).

I’m certainly more inclined to continue to actively participate on FUD. Most of my participation has been on TuD recently with people like @spdif but that’s probably because of the much lower activity levels across FUD. That might change :slight_smile:

I think the important thing that must not be lost is the TuD community. I speak mostly to T1s but splintering us off, even by accident, does not seem to be a good thing to me. Rather than archiving the site retaining the members as a common group seems to be most important.

John Bowler (most often: jbowler)

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