Diabetes.co.uk

[Robinredbreast]

Now you tell me ! I've just had raspberries and arsenic on toast ! ( joking )

Raspberries good. .......arsenic not so good ..................

 

[phil1966]

Mmm I wonder if he is an idiot re websites or getting kick backs???? Does that answer your question?

Maybe (probably) he's neither and simply recognises that this site is much better and far more useful than diabetes.org.uk! (IMO)

 

[JTL]

If you want expert advice make an appointment with your GP.

Removed inappropriate sentences - Anna29

 

[JTL]

If you want expert advice make an appointment with your GP.

Removed inappropriate sentences - Anna29

Wish I could remember what I said now .....

 

[NoCrbs4Me]

Wish I could remember what I said now .....

It was an invitation, if I remember correctly.

 

[johnboy412000]

@nosher8355 Thanks for the Tag Glad to have been of help

 

[Lamont D]

No probes mate! Can you help my team please.

Going down! Going down! Going down! Going down!

 

[Scardoc]

Just read this thread after a few days offline and, to me, there seems a blatantly obvious answer reference the question of "experts". We need both the academic experts and experienced living with it experts. Ideally, we need them to be close to each other too.

I do think that there is a huge danger, on a forum such as this, that we believe that we know so much more than the experts because we live with diabetes. Yes, if they are not diabetic then you have the upper hand when it comes to what will a jammy dodger to your BG level and how a pint of beer or four will effect you. But what about the biological and chemical side? These guys are experts because the have studied and been educated in their field. Their opinions have been formed through research of their own and of other experts in the same field. This should not be ignored.

The fundamental difference for me is that we know different things to them. I could sit and explain a day in my diabetic life and how my meals, mood and exercise impacted my blood sugar levels. They could explain why and what was going on.

We need the experts to do the research and to know as much as possible about how things work so they can come up with treatments etc. They need us so they can get feedback on what works and what doesn't work etc. I'm sure there will be a plethora of fingers hitting they keyboard now to say "but they don't know and don't listen" but c'est la vie!

I'm sure somewhere on this forum it says to always seek medical advice. I prefer to seek both, medical and patient.

 

[CollieBoy]

@Scardoc,
I see where you are coming from re experts. Unfortunately some of the "Experts" are self professed and extend no further than a couple of hours in a lecture theatre years ago or are going by what a third party heard on a seminar!

 

[Brightside]

Just read this thread after a few days offline and, to me, there seems a blatantly obvious answer reference the question of "experts". We need both the academic experts and experienced living with it experts. Ideally, we need them to be close to each other too.

I do think that there is a huge danger, on a forum such as this, that we believe that we know so much more than the experts because we live with diabetes. Yes, if they are not diabetic then you have the upper hand when it comes to what will a jammy dodger to your BG level and how a pint of beer or four will effect you. But what about the biological and chemical side? These guys are experts because the have studied and been educated in their field. Their opinions have been formed through research of their own and of other experts in the same field. This should not be ignored.

The fundamental difference for me is that we know different things to them. I could sit and explain a day in my diabetic life and how my meals, mood and exercise impacted my blood sugar levels. They could explain why and what was going on.

We need the experts to do the research and to know as much as possible about how things work so they can come up with treatments etc. They need us so they can get feedback on what works and what doesn't work etc. I'm sure there will be a plethora of fingers hitting they keyboard now to say "but they don't know and don't listen" but c'est la vie!

I'm sure somewhere on this forum it says to always seek medical advice. I prefer to seek both, medical and patient.

Scardoc you are like a breath of fresh air....my point exactly....we cannot simply believe everything on here and ignore the scientists and acedemics...sure we get frustrated because a GP is singing from a standard treament songsheet which is way too old and hasnt been updated....but what about real quakery....how do we as patients distinguish the wheat from the chaf....and thats where we need an "academic expert"

 

[Robinredbreast]

Scardoc you are like a breath of fresh air....my point exactly....we cannot simply believe everything on here and ignore the scientists and acedemics...sure we get frustrated because a GP is singing from a standard treament songsheet which is way too old and hasnt been updated....but what about real quakery....how do we as patients distinguish the wheat from the chaf....and thats where we need an "academic expert"

Of course you can't believe everything you read from members on any forum. But basically as I see it, I find it a wealth of information, support, helpful advice and many 'pointers' in the right direction if 'professional advice is needed and this is coming from people who have the same condition, but so often different management. By that I mean other type 1's. We have to 'cherry pick' at times and then we do and think what would be best for our own diabetes care and ask lots of questions.

One medical professional could say, this is the best and another one could completely disagree, yet both have letters after their names and have studied at university. How does one pick the right academic, unbiased, fair and can actually listen to what we, as the diabetic ( or has diabetes) has to say. After all we are the ones living with this condition. It's not all black and white.

 

[Daibell]

Just read this thread after a few days offline and, to me, there seems a blatantly obvious answer reference the question of "experts". We need both the academic experts and experienced living with it experts. Ideally, we need them to be close to each other too.

I do think that there is a huge danger, on a forum such as this, that we believe that we know so much more than the experts because we live with diabetes. Yes, if they are not diabetic then you have the upper hand when it comes to what will a jammy dodger to your BG level and how a pint of beer or four will effect you. But what about the biological and chemical side? These guys are experts because the have studied and been educated in their field. Their opinions have been formed through research of their own and of other experts in the same field. This should not be ignored.

The fundamental difference for me is that we know different things to them. I could sit and explain a day in my diabetic life and how my meals, mood and exercise impacted my blood sugar levels. They could explain why and what was going on.

We need the experts to do the research and to know as much as possible about how things work so they can come up with treatments etc. They need us so they can get feedback on what works and what doesn't work etc. I'm sure there will be a plethora of fingers hitting they keyboard now to say "but they don't know and don't listen" but c'est la vie!

I'm sure somewhere on this forum it says to always seek medical advice. I prefer to seek both, medical and patient.

Would you agree that a GP who has just come off the Warwick course and hasn't heard of Late onset T1 can be called an 'expert'. This GP is in other ways an excellent GP but don't assume that the diabetes training GPs and DNs receive makes them an expert. It's many years experience and the ability to absorb and sift information (if they have the time) that makes a good diabetes HCP. My DN is one of those but has sadly moved on with a promotion.

 

[Mike d]

Well said RRB

 

[JTL]

I would imagine everyone on here keeps medical appointments with experts and then ways up the pros and cons of what they have just been told.
My resident expert tells me to eat Weetabix no matter what I say to her.
I cannot eat Weetabix Mrs expert!
The members on this site are not stupid .... not ignorant and not listening to the likes of me over any experts.
They listen to the likes of me and take note ... compare it with what others are saying and experiencing.
It's called having common sense and being reasonably intelligent.
There won't be many experts who want to be part of a peoples support group on the internet.
How many people passed their driving test without a single lesson from an expert?
Cars can be lethal remember.
Go see your experts like we all surely do but for Gods sake don't invite them here to squabble amongst themselves over who's knowledge base is best.
Google is your friend if you want some science on the subject .... don't be surprised to find that American medical sites are different than U.K ones where one lot want your money and one lot don't.
Don't be surprised when one expert with a corporate pay cheque differs from one who has a research grant from one who doesn't have either.
The food industry is one of the most corrupt businesses on the planet ... as is the science and medical and pharma lot.
Would you trust an expert in politics to be honest if that expert was a politician?

 

[Mike d]

My final word on this issue ..... just how do (non diabetic) "experts" become "experts" unless they learn from those that live with this condition. Answer? They can't.

You can read from journals and books until the cows come home, but you are conditioned to what you learn or what you have been taught.

Want years of that or days with those who have achieved the seemingly impossible and / or live with it? Yes, there's a balance (I ain't THAT blind) but no way in hell would I ever trust an "expert" over many people here.

Over and well and truly out

 

[JTL]

The experts I see who were aghast at my declaration of going on the LCHF diet are now saying .... well yes low carb does seem to be the way we should be heading but they are reserving judgement on the fats just now.
So the remarkable results I have achieved by listening to people on here and comparing it with links supplied and the dismal results I was getting following the experts advice has now gotten the experts listening to me ... the none expert.
My doctor has admitted to me that yes in the short space of a few months I have become the only diabetic on their books to be showing such startling improvements in weight blood sugars blood pressure and cholesterol.
My medication needs have plummeted and I take no statins.
So it would seem I have become the expert at my surgery.
How did I become such a shining light?
By reading lots of stuff on here.
By trying the experts way and becoming sicker.
By deciding I had nothing to lose by listening to the experienced people on here and giving it a go.
That way I seem to be becoming something of an expert.

 

[Scardoc]

Would you agree that a GP who has just come off the Warwick course and hasn't heard of Late onset T1 can be called an 'expert'. This GP is in other ways an excellent GP but don't assume that the diabetes training GPs and DNs receive makes them an expert. It's many years experience and the ability to absorb and sift information (if they have the time) that makes a good diabetes HCP. My DN is one of those but has sadly moved on with a promotion.

No, I would disagree entirely for the simple reason that they are General Practitioners (as you have also stated). I do think that people sometimes expect GP's and DN's to know too much. They are a front line of diagnosis and treatment and the specialist diabetes teams and those clever folks wearing lab coats and staring down microscopes are the experts or specialists. The blurred line, as I see it, comes when GP's or DN's insist on telling diabetics living with the condition what to do when the diabetic is saying "no, that doesn't work".

But yes, like us diabetics, the GP's etc need to learn from experience. They will never be diabetic experts but you and I will certainly, if we want to be, be experts on managing our diabetes. I think I'm pretty **** good at it (he says 24hrs after giving blood for the latest Hba1c! Gulp!) but I know nothing in the grand scheme of things as to the biology of my condition.

@Brightside - I do get where you are coming from. We, as individuals, tend to look at a very narrow spectrum. The experts do, in my opinion, consider a much broader spectrum in their research and have a vastly deeper understanding of what biologically is happening. What they can't ever really do, and this forum plugs the gap, is present a solution or plan for each individual case as we are all so very different. On this forum, however, you can ask any question and there's a 99.9% certainty that someone will be able to help based on their experience. It may not be a 100% "this will work" answer but if it's worked for them why not give it a go? I do think that sometime there is a tendency on forums for people to rubbish an experts opinion and unless you are trained and work in the same area as that person, and can produce the research of your own to offer an alternative, then maybe you shouldn't.

 

[Totto]

The point with a forum for patients the fact we are patients, we have diabetes, we learn from each other. This forum is for us to share our experiences.

I can't see any point at all in hiring experts of any kind to give advice on a forum like this. The few HPCs that are members seem to have joined to listen to us in order to learn how to treat their patients than the other way around and I think this exactly as it should be.

 

[Brightside]

well blow me down....jeez I never realised there was such a dislike (almost hate for the experts)....mind you I have experienced it once before on a diabetic cycle ride when the T1's were riding at near to 2.8mmol and the Doc (who was no expert being a sports med doc....was panicking because he was going to be liable if those guys fell off their bicycles.....

All I am trying to say is....this site that makes a fortune on marketing and promo fees can do something better for us...why not get an expert in to do say a webinar on LCHF....or the future of pumps....or what is the cure for T2 or such like....Oh and when i say expert I mean experts....not the DN or GP im talking Jeff Volek on keytosis or Tim Noakes on LCHF etc etc There is knowledge science research out there that could benefit us....but with an attitude of ..... I am diabetic only I know whats good for me....we will never learn more.

 

[Administrator]

Hi everyone - @Brightside you make a valid point - what do we do as an organisation? Well, we think we do a fair bit! Our motto is simple - put the community first, be transparent and empower people through the services provided. In no particular order:

• We provide health information (i.e. content on Diabetes.co.uk) and more importantly a platform that is changing the digital and health understandings (i.e. this forum). 73% of members stated they improved their understanding of diabetes because of information on the diabetes forum (Nov 13 survey) and more awesomely, 44% of members stated they improved their blood glucose control. This is massive... and we're exploring how to get this clinically quantified.
• We're contributing to research (such as "Low carbohydrate diet to achieve weight loss and improve HbA1c in type 2 diabetes and pre-diabetes: experience from one general practice"). We're working on a number of proposals regarding emotional physiology as mindfulness based approaches have been scientifically proven to ease depression, anxiety and stress and we are actively investigating the brain-heart connection and the effects of emotions on physiology.
• We've launched initiatives that are having a *huge* impact on health outcomes such as the Type 2 Testing Program (86% of members after 12 months *benefit from better blood glucose levels* and control of their type 2 diabetes). These programs are available worldwide.
• We're creating free structured education programs for people with diabetes (worldwide programs) - such as the Hypo Awareness Program (currently, 70% of members who take the program improve their understanding and awareness of the sign and symptoms of a hypo). We're currently working on 3 further education programs (it's VERY exciting and at least 2 of them should be launched by September). We think education is crucial and that's where the majority of our focus currently lies.
• We campaign - #BloodSugarSelfie raised awareness with 4 million people that having diabetes doesn't mean all your blood glucose levels are going to be in range (and it saved a life!) Admittedly, this was our first ever campaign, and we're working on several larger campaigns.
• We fundraise - #BloodSugarSelfie raised a substantial amount of money in just a day for the JDRF.
• We publish cookbooks (both online and offline) that are contributing to substantial changes in what people are consuming.
• We're influencing research and understanding, bringing into the mainstream concepts that would have been laughed at several years ago! In 2014, we partnered with Dr David Cavan to launch Reverse Your Diabetes: The Step-by-Step Plan to Take Control of Type 2 Diabetes. Written by Dr David Cavan, one of the UK’s leading experts on diabetes self-management. He worked for many years as a Consultant at the highly-regarded Bournemouth Diabetes and Endocrine Centre and is now the Director of Policy and Programmes at the International Diabetes Federation, whose mission is to promote diabetes care, prevention and a cure worldwide. The book discusses how the type 2 disease process can be reversed, which is a major change from what most believed until a few years ago.
• We make apps (such as the Hypo Awareness Program app, DiabetesPA and the Diabetes Recipe app) that are making peoples' lives easier and/or more convenient.

In fairness, a lot of the things that we do, we don't necessarily shout about. This year, we're going to start connecting the dots and shouting about them a little more. Yes, we do earn a living through advertising; as you can see above - the majority is reinvested into changing healthcare - both online and offline - and we're doing that. (And that goes before the running costs of the site, databases, software licences, etc!)

On the event note - we are investigating how to set up patient-led events although we're not sure of the logistics on doing this as we'd like to bring as many people in as possible, especially from the community here on the forum. We'd love to explore that!