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Jun 5, 2019
NottsKnots
10 posts
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Topic: Questions for HCPs / Anxiety and depression I lost any inhibitions 25 years ago whilst reading about a girl who was traveling around Africa; there werent really any facilities that she could use, so she injected through jeans! I dont think anyone these days would recommend that, but if she could do that in public, then what the h3ll was my problem.Be discrete - if you have loose clothing a belly jab can be done almost invisibly behind a table whilst sitting (at a restaurant or at a work desk). If you are wearing a jacket (suit or coat) then its an easy shield. Heck, I even do it on planes, and I cant hide that from the person sitting next to me. I find that getting the test kit out for a BG measurement tends to diffuse any thoughts they may have. Get a snazzy insulin pen - no druggy has a designer pen, so that also tends to make anyone who notices less concerned. Its more and more common to see people, and I always mention diabetes to colleagues - for safety reasons, in case I ever have a bad hypo and need help. That way everyone knows whats going on and pretty much ignores me after day 1 (and being a contractor, I work for a lot of different clients). I try to spread the word far and wide, so more people become aware anyway. As already said, no-one else really cares or notices what you get up to; the more observant in society tend to be the more intelligent and have some idea of the difference between medication and abuse. So, do it and dont worry about it: give it a few weeks and you’ll forget all about it. NEVER miss the dose for something as daft as that: avoiding the complications of diabetes is WAY more important to you than a little perception of someone elses thoughts (that they are probably not having - its almost certainly in your head only, so banish it). Good luck. |
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May 29, 2019
torana
53 posts
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Topic: General Discussion / Spam This continuous spamming of our great forum is destroying the validity of our site!I have copied ways of minimising this crap. Maybe others have suggestions. It’s our site! Spam is the scourge of the internet and can do significant damage to your community if it is left unchecked. There are two kinds of spammers to worry about: spambots and human spammers. Bots are unintelligent software programs that automate the posting of spam and can usually be easily defeated since they are rigid in their behaviour. Human spammers present a greater challenge since they can bypass the traps that catch bots and can quickly change their behaviour. Spam post in forum Why would humans be spamming your forum and how can this make money? Most forum spammers aren't trying to get you to buy something, they are attempting to get higher rankings in search engines by creating lots of links from your pages to their own site. Here are some suggestions on how to defeat the spammers: 1. Make sure links in your forum are set to ‘nofollow’. This tells search engine crawlers not to follow the links and therfore, SEO spammers will derive no benefit from spamming your forum. (Vanilla’s links are nofollow by default.) 2. Make sure registration includes a CAPTCHA. Captcha’s are those slightly deformed images of words and you see on sign up pages. Captcha’s do a pretty good job of keeping out spam bots. 3. Require email confirmation before allowing someone to post. Bots and humans can get around this but it's an extra bit of efforts that most real people won't mind. 4. Enable anti-spam plugins. These plugins can automatically detect suspected spam based on links, IP addresses, email addresses and the comment itself. Keep in mind that these plugins are not 100% effective and do sometimes return false positives. 5. Don’t allow editing of comments after a few minutes have passed. A frequent trick used by spammers is to create a comment that doesn’t look out of place (For example: "This is a great post, very insightful.") and then will come back after a couple of weeks and edit the comment to include spam links. 6. Get the whole community involved. Ask members to help out moderators and flag spam. In Vanilla, this can be done with the Spam Reaction. 7. Be ruthless. Moderators and admin should review the spam queue on a daily basis, ban spammers and delete all their content. 8. Only allow members that have proven themselves and have a reputation to be allowed to post links. In Vanilla, it’s possible to prevent members with a low Rank from posting links, editing comments, etc. Ranks are earned by accumulating reputation points or making a certain number of posts. 9. Provide information on advertising and partnering opportunities you might offer and make it clear in your community guidelines what is and what is not acceptable promotion. This can help with accidental spammers who are trying to legitimately sell something to your audience. While spammers are always looking for ways around your defences, following these suggestions will help to eliminate spam. |
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May 27, 2019
sjohno
37 posts
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Topic: General Discussion / Dismal Hba1c levels
Hi torana Just had the recent Hba1c results back, the last one was 6.3 in Sept 2018, May 2019 is 6.5. I'm happy considering I had 6 weeks just sitting  .
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May 26, 2019
Carolyn81
1 post
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Topic: General Discussion / Dafne Diary Do you still have a link available Marke. |
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May 25, 2019
alturn
78 posts
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Topic: Questions for HCPs / Anxiety and depression Inject with pride - it's other people who might have a problem.I've never had an issue injecting/testing in public, if anybody is nearby and curious I would just explain. And I would never consider using a toilet unless had to inject other than in stomach. |
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May 25, 2019
sjohno
37 posts
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Topic: Questions for HCPs / Anxiety and depression Hi MichaelI used to have the same thoughts as you but now I very happily test my BG and inject my QA whilst sitting in food places. You'll notice that your surrounding audience are involved/engrossed in their own social activities. If anyone does catch sight of you injecting and they're brave enough to voice their opinion (alot aren't and wouldn't) it is at the end of the day none of their business and you have an excellent explanation if you were ever questioned lol. I wouldn't inject my BI as I do this in my bum...........I do go to the loo to do that  Good luck, you will be fine. Sarah |
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May 25, 2019
Michael Bortoft
1 post
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Topic: Questions for HCPs / Anxiety and depression Hi all new to the diabetes I am type 1 and inject my bi 2 times a day and my QA ever time I eat at the moment I am finding it hard to come to terms with injecting in public before I did the DAFNE course I would just avoid taking my insulin if I was out I seem to have this overwhelming fear off people watching me and judging me thinking am some sort of druggie Advice would be gratefully welcome
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May 24, 2019
torana
53 posts
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Valid criticism or comments are always useful for improving any organisation, especially DAFNE yet there is a lack of research on long term CGM readings leading to lower HBa1c levels. CGM manufacturers’ research suggests that continuous glucose readings lead to lower Hba1c levels in the short term yet other recent research has highlighted that 92% of Type1 diabetics, with or without new technologies, are outside the normative Hba1c range. This seems to compare to the huge profitable weight loss industry where there is also an intense initial educational program with positive expectations, yet the failure rate as we all know is a mammoth 95 per cent in the long term. Yes, we need to question DAFNE in that there may be also initial success but in the long term, statistically, we are tempted by our takeaway culture and the difficulties in juggling the huge number of Type1 variables. No doubt, this reality, no matter how dismal or complex, should always be a foundation for discussion. |
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May 23, 2019
Warwick
426 posts
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Topic: General Discussion / Flash and continuous monitoring I use CGM most of the time (Dexcom) and I find that it is quite compatible with DAFNE. I completed the OZDAFNE course in 2012 and have been using CGM since 2015.I'm not sure what additions to the course I would make to include CGM. If my BGLs go high, then I inject and if they go low, then I eat. But that is standard stuff anyway that you do if you take a BGL meter reading. I love seeing patterns on my CGM and it certainly helps with working out if my basal dose is correct or not, but it is just another tool that helps. |
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May 23, 2019
marke
686 posts
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Topic: General Discussion / Flash and continuous monitoring Hi, I should point out that this is a totally personal point of view and does not reflect the DAFNE Programme view OR necessarily Dafneonline.So with that out of the way, I would say the people lucky enough to have Flash or CGM's are unlikely to be typical DAFNE graduates by a long way, they are likely to be a minority at best. They are of course entitled to their opinions however the vast majority are not going to get access to this technology anytime soon , so why invest a huge amount of effort adjusting the course for a few people. Wow controversial I know but reality I think. As it happens I was chatting yesterday with my Consultant and she told me if I wanted to get the Freestyle Libre on the NHS I needed to test 8 times a day for a month. Apparently the Libre is then cheaper than test strips for the NHS and she can prescribe it. Great logic huh ? She was not convinced it was the best CGM anyway. Apparently Medtronic are just releasing a new pump a 670 ( I have a 640) and it will have an integrated CGM. The sensors for it will cost around £450 per year and are more accurate than the Libre. However again she/we would need to convince the NHS to pay the extra £650 on the base cost of the pump. Then again I guess the majority don't even have pumps so again maybe not relevant. There is a new DAFNE Course and it will probably include a device to make getting readings into a system easier probably via bluetooth. However I don;t know what stage they have got to with it and again personally I think they are chasing the wrong idea but such is life,,,,, |
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May 23, 2019
MIke P
8 posts
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Does anyone know if there any plans to update the DAFNE course to take account of the dynamic readings from Flash and continuous blood glucose monitors? I ask because I’ve read some recent critical FB posts from recent graduates saying how out of touch the course feels to those who have been using this technology. Is the need for change recognised and if so, are training needs now being addressed? |
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May 19, 2019
torana
53 posts
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Topic: General Discussion / changing to levemir- advice please Hi Marke,It’s not only annoying. It’s highly devious, deceptive and delegitimises honest threads made by DAFNE members. The deleted thread was by “allbpurcbd” and it’s evident by the inclusion in the title that CBD is a focus of sales, not just flowers. Many members, may have tried CBD tablets for whatever reasons, yet now how can we believe their forum threads, in that they may be just a part of these pop up shops and members of sales teams infiltrating our pages. You do fantastic work, yet like many of us it’s hard to juggle all of life’s responsibilities by yourself against these time wasters and “users” in the literal sense. Maybe, other DAFNE members have suggestions to eliminate these “users.” |
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May 19, 2019
marke
686 posts
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Topic: General Discussion / changing to levemir- advice please Hi, I know its VERY annoying. I keep deleting these accounts when I spot them but they keep creating new ones.... |
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May 17, 2019
torana
53 posts
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Topic: General Discussion / changing to levemir- advice please Hi everyone,Something has to be done about these advertisements appearing constantly on the DAFNE site! The above thread by allpurcbd appears to be a graduate however dumps this trash regarding flowers on the same site related to someone’s diabetic health problems on insulin. I have a suggestion that we widen the net to eliminate these self serving users. Why not have a number of trustworthy members that can eliminate these advertising threads as they appear on our site instead of leaving the onus to one person? |
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May 7, 2019
torana
53 posts
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Topic: General Discussion / Dosage auto-calculation in apps Hi Simon Well done on the site. It would appear that the DAFNE app to upload blood glucose information is widely used and appreciated by members. I make this assumption because most members online have no posts against their names and hence would most probably be only accessing the app.I have one suggestion for the app that the location of the injection site on the app includes both the left and right side of the stomach. I alternate stomach sides weekly, using the top half for my quick acting and the lower section below the navel for the long acting insulin. Most diabetic educators have stated to me that the stomach is the most reliable area for the needle. |
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May 2, 2019
Simon
578 posts
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Topic: General Discussion / Dosage auto-calculation in apps
Still, this is difficult for some people - and I don't see why they should be belittled for that. Switching gears a bit, what was the constructive feedback you had about the app? |
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May 2, 2019
jh0
16 posts
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Topic: General Discussion / Dosage auto-calculation in apps
You can understand why. The App is offering 'medical advice' when it's not actually doing this. Importantly, given the direction that this discussion has gone in, people seem to think that it's ok to be considered literate even if they're innumerate. Basic arithmetic, barely number crunching. |
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May 2, 2019
Simon
578 posts
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Topic: DAFNE Online Mobile / Pulling BG from Apple Health Would people use this feature? For me I use a DexCom G6 which pushes my BG reading to Apple health every 5 mins. Given the right permissions the DAFNE Online app could pull your latest BG from Health and populate that in the editor when you're adding a new entry. If that's useful then I see it happening a couple of ways:1. A button on the BG row of the editor itself to pull the latest reading from Apple Health 2. A popup when you're adding an entry asking if you want to add BG manually or from Apple Health 3. Other suggestions welcome Let me know your thoughts. |
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May 2, 2019
Simon
578 posts
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Topic: General Discussion / Dosage auto-calculation in apps Just to clear up some definitions:Illiterate - unable to read or write Innumerate - without a basic knowledge of mathematics and arithmetic It's an unfortunate truth that Type 1 Diabetes doesn't choose to only affect those who are good with numbers. The dosage calculation in the app was intended to help those out with the number crunching needed to follow the DAFNE principles correctly. It did show all the working out that were performed so people could verify these themselves. As we have already described we were told to remove it as it meant that the app was classified as a 'medical device'. Thanks for the messages of support on this thread - it's great to know that there's people out there still getting value out of the app and site in spite of features needing to be removed. As ever if there are any specific features you'd like to see or feedback you'd like to share (ideally more specific than the App needs improving considerably) then don't hesitate to get in touch. |
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May 1, 2019
John Syer
19 posts
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Topic: General Discussion / Dosage auto-calculation in apps Oh wow!
So I guess we have the confirmation on my inflammatory speculation. Although I'm not sure that my 34 years since diagnosis as a T1, 8 years DAFNE practitioner, 25+ years developing software including 7+ in the biomedical field (including getting many medical devices through the legal quagmire that is FDA approval), and Beta tester for this DAFNEonline app qualifies me to determine that. The above mentioned life experience has taught me that there is no one "correct" way to solve a multi-faceted problem such as managing diabetes.
If you'd read this thread properly, you'd see that it was a post on the removal of the auto-calculation convenience functionality (3.5 years ago), that was forced upon the developers by MHRA (https://en.wikipedia.org/wiki/Medicines_and_Healthcare_products_Regulatory_Agency), although based on your posts, you seem to have a different perception of what is going on, or perhaps an agenda to push.
It would appear that your use of the word "illiterate" is a poor choice when I can only assume you mean "ignorant". But it does reinforce the inflammatory verdict. Now that you've stated that illiterate people deserve to be insulted, then you've really just escalated to online troll. Regards, John |
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May 1, 2019
jh0
16 posts
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Topic: General Discussion / Dosage auto-calculation in apps
I didn't insult anyone. But if you consider yourself to be literate when you can't do basic maths then yes you deserve to be insulted. |
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May 1, 2019
Theodore Taylor
2 posts
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Topic: General Discussion / Dosage auto-calculation in apps
Dude, Respect for the 30 years diabetes, sure you have a lot you could share with us (18 years now, but the first 5 i just didn't take care of myself at all) I feel like (perhaps not correctly) you might have a different view if you had a low insulin resistance as some of us do. Calculating 0.7 units to every 10g of carbs (absolutely solid for me) and logging the results in the process was absolute magic. I'm no stranger to excel, but it simply isn't as convenient as having an app that does both and syncs - giving you graphs also. The idea isn't to take away responsibility from the user, the idea is to make it simple and convenient for the user to calculate, log and manage their insulin dosage. It was a really useful tool for me. I owe a lot to it. That is not to say my diabetes management has got worse - I'm better than ever - but it helped me a a lot in the early stages and I would totally use it again if it was available. Diabetes is a no-day-off illness. Anything that lightens the load, and helps us to live a more "normal" life is a god-send. Ps. Love you all, never let it get you down ;) |
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May 1, 2019
Annette Bell
72 posts
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What is your problem? If you don’t like the app don’t use it. The rest of us love it and find it really useful. Also, literacy is not to do with numbers. Some people with high IQ can have dyscalculia, the numeric equivalent of dyslexia. You don’t have to insult people who may have difficulty with numbers. This topic is now irrelevant anyway as the app no longer does the calculations for you. I use the app to show my diabetes nurses the graphs, which I also use to monitor trends and adjust my dosage when necessary. You’re happy using your spreadsheet. Great! We are happy to continue to use this great app as it is thanks. |
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May 1, 2019
jh0
16 posts
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Topic: General Discussion / Dosage auto-calculation in apps
Pardon, do you consider yourself literate if you can't do basic maths? That's plainly incorrect! Further, who said anything about paper diaries apart from you? The whole point here is representing the data of your condition in a manner which is lucid and transparent to both yourself and the medical staff helping to manage your condition. the diary can take any form. But if the diary is a black box (such as what you seem to subscribe to) how is that going to help you or anyone to analyse the condition in retrospect?
What's your point? The App is offering some half-hearted advice (quite likely flawed advice) and I can fully understand given licensing restrictions in place from the medical institutions, why it shouldn't be doing this without rigorous testing.
In my earlier post I've offered plenty of advice only if people such as yourself are willing to read and listen. 30 years diabetic, 14 years DAFNE, and 20+ years developing various type of software systems. I think that makes me quite qualified to comment on points raised here with your App. And what are your credentials exactly? |