Citizen Scientists - A Warning To The Medical Profession



Despite the name, this article will be the least ‘sciency’ thing you’ll see today. It’s entirely built off self-reported data - anecdotal if you will. Why? because I am a citizen scientist. I am someone who shortly after diagnosis of type 1 diabetes, began seeing holes in the information I was being told in the doctors office to what fellow diabetics were doing and getting great results. So let’s get right to it.


The world has changed a lot in the past 100 years. Although we take a lot from tradition and our culture, we are taking even more from technology and social media. Our homes and places of work are changing and converging.


Could you have imagined someone being an ‘influencer’ 50 years ago?



If you’re not entirely convinced you know what an influencer is, here’s a definition:


A person with the ability to influence potential buyers of a product or service by promoting or recommending the items on social media.Oxford Dictionary’

The influencer market is on track to be worth a whopping $15 Billion by 2022. So, now that you know what one is, you can go back to your normal ‘influencer-less’ life (and so will I).



Diabetes and the Internet


Arguably, one of the biggest things to have influenced humanity is the internet. It has sculptured our lives beyond anything that has come before. Our capacity to obtain information is now instant and endless, but it has also affected many other parts of our lives.


‘Experts’ no longer don a white coat and have multiple letters after their name. In fact, it is becoming increasingly popular to take the opinion of common citizens, partially due to the fact we are drowned in confusing, repetitive and often contradictory guidance from the so-called professionals charged with guiding us on our health and wellbeing.


Why?


Traditional experts are now bound in red tape and clouded in bureaucracy. Frequently they are backed (paid huge sums of money) to promote a particular agenda. We see it within the food industry with the perpetual onslaught of nutrition guidance around carbohydrates, as well as attacks on fat and red meat. If you stand up and say “I’m sorry, but there’s no strong data / evidence to back up these claims, then you’re dismissed, called a conspiracy theorist, with anti-establishment ideals, and a general lunatic.


So now, us mere mortals are losing trust, respect, and questioning the very people that were traditionally seen as unquestionable - doctors, surgeons, scientists, priests, teachers, the list goes on.


We’re turning to the internet for information and guidance - and finding it.


Charities, not-for-profits, foundations, and many more altruistic organisations have an online presence with mountains of figures, statistics and advise. But then you have citizen scientists - people with a passion and persistence to spend their lives researching, interviewing, digging and uncovering information without the red tape, no government or corporate bureaucracy, no hoops to jump through, no paid / idealist agendas (generally).



This veritable mine-field of advise has it’s positives and negatives.


Positives


1) No red tape

2) No bureaucracy

3) Ability to think ‘outside of the box’

4) Takes information from all/every source

5) Accessible and proactive


Negatives


1) Lacks professional accreditation

2) Potentially did not obtain a degree or higher in the specific field

3) Does not have to go through proper channels to disclose information

4) Guidance/Information is not peer reviewed

5) Unable to perform large scale research-analysis


If you can find a reputable person/organisation that shares your values and passion online, your requirement for the ‘expertise’ of a paid and often bias professional to spend 1000’s of dollars a year on becomes less and less.


So how does diabetes fit into this?


Diabetics are forced to take responsibility for their own disease. It‘s incredibly unpredictable and when we look for guidance from our medical teams, we’re often met with confusion or advise steeped in decades-old research.


Even the framework of what‘s considered general practice is frequently inconsistent. For example; “what is a perfect blood sugar target range?


Ask 10 diabetics and you’ll likely get 20 different answers. Ask 10 doctors and they’ll likely ask you.

So it makes sense that diabetics are turning to the internet more and more. There are fantastic online groups (nudge nudge) that tap into the knowledge of endocrinologists, diabetes educators and dieticians, but can move much quicker and importantly know what living with diabetes is really like. (e.g. It’s like trying to solve the worlds hardest riddle, in another language, whilst you’re dying for the toilet and having a hypo)



We have evidence!


It may not be peer reviewed, have the scope of a randomised control test or meta analysis - it’s purely anecdotal. But it’s our body, our research, over a life-time, with our results, and it’s more important than any paper from any university. Every finger prick, bit of exercise, stressflul situation, sickness, and sleepless night is logged and the data doesn’t lie.


The medical profession needs to be concerned.


Without a shadow of a doubt, the general public are better informed than ever before. Our medical teams are being forced to play catch-up with new practices to help us manage this complex disease. If the current trend continues, I.e. inconsistent and dangerous advise. They risk an entire group turning to alternative sources for information and support.


I often read posts on support groups explaining that a diabetic has become disenfranchised after a consultation with their doctor or endocrinologist. They may have explained that they want to try low-carb or keto after years of failing to control blood sugars, and ended up being bullied or ignored by the one person who‘s supposed to have their best interests at heart. Unfortunately, this scenario plays out all too often.


There are some amazing and progressive medical professionals out there, and if you’ve found one, keep hold of them. If not, keep looking, because sticking with one that doesn’t listen to you or make the effort to move with the times only slows you down to reaching better health.


Your medical team would likely add that the caveat to all this is that we may see some worse health outcomes as people migrate to under-qualified sources for advise and end up getting wildly different results. This may be true, but it’s not the diabetics fault.


There is no easy answer to this all. Just like diabetes, it’s convoluted and like hitting your head against a brick wall.


The best (and safest) advise should be to take advantage of all that the internet has to offer. It’s a treasure-trove of useful tips, tricks and access to some of the best minds on diabetes. But also find a medical team that suits you and your goals. Make sure they understand why and how you’ve reached where you are and have respect for how you get through every day.


Nathan

Believe the hypo

www.believethehypo.com

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