Home » General » The trouble with the ‘NET’ (Part 1) – internet dangers

The trouble with the ‘NET’ (Part 1) – internet dangers


true-pr-quotes-from-us-presidents-and-one-thats-fake-by-prdotco-4-638Of course, it’s impossible that Abraham Lincoln said this but I got the graphic from the Internet and that’s the point of this blog!

The rise of the NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain.  Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location.  Whether you like it or not, we are witnessing the power of social media and its effect on society.

However, the ‘NET’ can also provide ‘misinformation’. Unfortunately ‘misinformation’ also includes ‘alleged’ cures for various ailments including cancer.  I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NET’ Cancer) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂  However, I soon found out the NET is potentially more dangerous than my NET (Cancer).  Put a foot in the wrong place and ‘boom’.  Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some.  Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem. It resulted in me writing a blog ‘Google is not a synonym for research. 

The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true.  There is an excellent blog piece written by Cancer Research UK who debunked various cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at ‘Don’t believe the hype – 10 cancer myths debunked’.  Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again).  Cancer Research UK will always provide balanced commentary on these claims.

You may also enjoy:

My Neuroendocrine Cancer myths postclick here

Alternative Therapy risks (or lack of)click here

Miracle Curesclick here

Hope is great, false hope is not.

Thanks for reading

Ronny

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23 Comments

  1. Jais Knudsen says:

    A funny thing is that it is often a huge advantage if you have another native language than English 😊.

    The reason is most of all the misinformants often use English to sell their waste to most people possible.

    When I search for trustworthy information about NET, I use Danish search words, and even though there is always a huge load of bull-feces found by Google, I can easily find good results on the 2-5 really trustworthy sites at the top.

    Most of the misinformation is in Google Translated articles, and if not other, they are frequently fun to read just because of the bad translation 😊.

    On the back side it is of course very difficult to find ANY relevant information about specialised NET types, and to someone who’s native language is not English, it can often be tricky to distinguish a professional piece of misinformation from something scientific. But to be honest… the scientific stuff I find about Calcitonin secreting pancreatic NET is typically pointing in all directions anyway 😎

    Like

    • Ronny Allan says:

      Good point. For me that is another clue to something suspicious, bad English grammar, spelling etc. Thanks for the comment. I’ll keep a look out for calcitonin secreting pNETs stuff for you!

      Like

  2. Christine says:

    I have been in for treatment Lutetium I miss these posts and only just got as far as my computer today.
    Ed you have made very important life changing decisions all your life. Educational choices, your career path, partners. You will have relied on the gut feeling for many of these decisions, all you can do and will have done in the past, is finally rely on your own instinct. You have loads of information, unlike some, think about it, and just do what you think is best; never mind other people, it is your body your life. Anyone you care for will I am certain support you.

    It is hard but there never will be a right answer and we are all in the same boat, with mind boggling choices. This is when you can reach out to others in the same position, like on this site and by doing that you can sometimes make a better decision after considering their experience or input.

    Stay calm and look after yourself.
    Christine

    Like

  3. Christine Craig says:

    Awareness is crucially important. I ended up in hospital for almost two weeks rather than four days. A young Doctor thought my flushing was the menopause although I was 59 and had had a medicaly recorded menopause at 37. He had overheard a conversation with a nurse asking if I had tried any menopause anti flushing meds or herbal remedies for my carcinoid. He jumped to a wild conclusion which resulted in my incorrect treatment and me feeling very ill. He admitted later he had no idea flushing was a symptom of carcinoid. I have frequently found myself against a brick wall. One was telling nurses that sudden elevated blood pressure was a symptom of carcinoid and should be recorded. They peferred to walk a way and replace the machine or take a new reading in ten minutes. We need to educate medical staff as well as other patients on symptoms, as many untreated symptoms can cause unnecessary death. Thanks for all your information, you do an amazing job.

    Liked by 1 person

  4. Ed says:

    I read the “don’t believe the hype” article and thought some of it was good but some of it seemed contrived. For example, to say there are no super foods that prevent cancer…..I’ve seen plenty of information that shows support the idea of certain foods fighting cancer. Here’s a link from my site….tell me what you think. 🙂

    http://www.carcinoid-cancer.com/master-list-cancer-fighting-veggies/

    Take a moment and watch the video by Dr. Greger. He is highly respected. Here’s a blurb about him. In the video he explains a medical study that shows certain foods, if I remember correctly, killing cancer.

    Dr. Greger is a physician, author, and internationally recognized speaker on nutrition, food safety, and public health issues. A founding member of the American College of Lifestyle Medicine, Dr. Greger is licensed as a general practitioner specializing in clinical nutrition. Currently he serves as the public health director at the Humane Society of the United States. Dr. Greger is a graduate of the Cornell University School of Agriculture and the Tufts University School of Medicine.

    Any how, thought you would be interested.

    Have a good Easter,
    Ed

    Liked by 1 person

    • ronnyallan says:

      Hi Ed, sorry to have taken so long to respond but I’ve been on holiday and wanted time to read your comment properly. As I can’t sleep (jet lag!), thought I’d take a look. I disagree that Cancer Research UK would intentionally contrive something – rather they are an evidence based organisation and they simply say there is no scientific evidence to support that superfoods “cure” or “kill” cancer. They are not suggesting that so called “superfoods” are bad for you and do say they are good as part of a balanced diet. The key point I make based on your input is the suggestion that superfoods can “cure” or “kill” cancer is not based on any scientific foundation – check out this link http://www.cancerresearchuk.org/cancer-info/healthyliving/cancercontroversies/superfoods/

      Liked by 1 person

      • Ed says:

        Where did you go!? I hope it was somewhere nice. I didn’t intend to imply that they were deliberately deceiving their audience but rather that the idea seemed pieced together based on the standard and conventional wisdom. There is a reason that alternative medicines are considered alternative….most conventional doctors do not accept them as valid. BUT some doctors do. They are outside the mainstream but that doesn’t make their ideas incorrect.

        What did you think of the short video in the link that I sent you? I think you will be surprised to see that there IS evidence that certain foods not only prevent but kill cancer in vitro and in vivo. Take a look. It’s a really short video. Honestly, it swayed me to accept the idea as fact rather than wishful thinking.

        Liked by 2 people

      • ronnyallan says:

        Calfornia, great time. I get you but I trust Cancer Research. There are too many newspapers prepared to publish articles based on zero scientific evidence. The power of newspapers to influence worries me nowadays – the latest one being pineapple! http://scienceblog.cancerresearchuk.org/2015/04/04/news-digest-prostate-cancer-family-tree-pineapples-walnuts-and-more/

        Like

      • Ed says:

        California! You were state-side?! Awesome. What was your favorite bit? Hey, the pineapple lady is a nut. The video I sent to you was posted by a doctor where he reviewed major scientific studies showing apoptosis. 🙂 Two different things. But, hey…everyone has to make their own choices. I’m not choosing food over chemo but I am supplementing my chemo with foods shown to fight cancer. Hmm…now I”m in the mood for pineapple. Thanks a lot Ronny!!!! 🙂

        Liked by 1 person

      • ronnyallan says:

        Just don’t eat it 72 hours before or during a 5HIAA 😁 I love pineapple

        Like

      • Christine Craig says:

        Sadly I feel such press gives false hope and syphons off money from other needed areas. I recently met someone who was utterly relying on the power of fruit vege and seeds to her detriment. They did harass the NHS to send them to a nutritionalist so they could learn more but promptly ignored everything as it did not fit with what they had read. Some foods were supposed to be increased as they were lacking various nutritional elements but were not. This person continued on to try to enroll others on what was clearly a poor diet and succeded. The impact of this will cost the NHS somewhere down the line and who knows how far the poor diet will spread. Unfortunately one persuasive person can pull in many. The press will of course never pay and they have had their misleading frequently wrong headlines for the vunerable read.

        Liked by 2 people

      • Ed says:

        It’s important to get your information from credible sources. I know for me, I only seek to supplement my current cancer treatment with diets rich with foods that are known for fighting cancer.

        Like

      • ronnyallan says:

        Understood Ed. Take care

        Like

      • Christine Craig says:

        You are so right Ed but some people are so desperate they are glad of any treatment and later realize they made the wrong decision. This is where you and Allan help so much by pointing out information which can be so difficult to find. thanks both of you.

        Liked by 1 person

      • Ed says:

        Wow. No need to thank me! To quote the movie…I’m just paying it forward. 🙂 Carcinoid cancer is so confusing to have…you never know if you’re reading something that will work for you or for other cancer types. It’s crazy.

        Like

  5. The misinformation is a direct parallel to the misdiagnosis of carcinoid. Carcinoid can be misdiagnosed as IBS & or Crohn’s. The same may be true for recently symptomatic patients. When searching online, they may conclude their symptom constellation to fit a lesser ailment. The best approach is multifactorial- taking what you know, what you researched, letting doctor(s) examine & diagnose, begin treatment or seek second or third opinion. With NET/Carcinoid flushing & other hormonal cues as well as a serotonin metabolyte test may distinguish their coincidence with IBS & Crohn’s symptoms. Rare cancers are not out of consideration in 2015. Right? Afterall, this is social media age! Let me tell you firsthand- very few have heard of carcinoid in particular. Outreach on a base level with basic information is still needed.

    Like

    • ronnyallan says:

      You are correct my friend, awareness is one thing and finding the accurate information is another (along with finding a doctor who understands the disease). Where it fits with the blog subject, I try to put sign posts into my blogs to take people to the most reputable sites where potential patients can get the right information without having to wade through some less than reliable sites. I sometimes have to give these sign posts directly to people who contact me privately or in a comment such as yours. This makes me happy if that person then gets some focus on the internet. Also, I’m seeing an increasing amount of hits in my blog statistics referred from ‘google searches’ which I see as a good sign that the ‘awareness’ is getting out there and I’m playing a little part in it. Some of these might be accidental visits but I still count that as awareness (…beyond the NET Community).

      Many thanks for taking the time to comment – this is much appreciated. Thanks also for your support on other media!

      Like

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