The trouble with the NET (Part 3) – Miracle Cures


Since I started blogging, I’ve had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence.  There’s a third factor and that is credibility – I’d like to think I’ve worked hard to earn that level of trust in my ‘product’. I use the NET to talk about NETs!  I’m a genuine guy with a genuine purpose and I don’t want to sell you anything – my ‘product’ is free.

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, annoying shared by our friends.  Easy to find, easy to read and worryingly, easy to share.  Surely these cures must be true, after all…..it’s on the ‘NET’.

I was, therefore, delighted to see that the U.S. Food and Drug Administration (FDA) recently posted warning letters addressed to 14 U.S.-based companies illegally selling more than 65 products that fraudulently claim to prevent, diagnose, treat or cure cancer. The products are marketed and sold without FDA approval, most commonly on websites and social media platforms.  Clearly, this is not just a USA problem, I suspect you all could tell me similar stories from your own countries? I just read a story from my own local area only last week. This is only the tip of the iceberg though!

Most of these claims are from obscure unheard of websites (clue 1) and yet they claim to have the cure for all sorts of illness including cancer (clue 2). They normally have a product to sell (clue 3). Clue 4 and onwards can be found by digging into their claims to see if there is any scientific evidence – normally there’s none; or it looks believable but the authors are also the owners of the company selling the product.

Here are some of the tactics they use plus a commentary from the US FDA:

  • One product does it all. Be suspicious of products that claim to cure a wide range of diseases. A New York firm claimed its products marketed as dietary supplements could treat or cure senile dementia, brain atrophy, atherosclerosis, kidney dysfunction, gangrene, depression, osteoarthritis, dysuria, and lung, cervical and prostate cancer. In October 2012, at FDA’s request, U.S. marshals seized these products.

  • Personal testimonials. Success stories, such as, “It cured my diabetes” or “My tumors are gone,” are easy to make up and are not a substitute for scientific evidence.

  • Quick fixes. Few diseases or conditions can be treated quickly, even with legitimate products. Beware of language such as, “Lose 30 pounds in 30 days” or “eliminates skin cancer in days.”

  • “All natural.” Some plants found in nature (such as poisonous mushrooms) can kill when consumed. Moreover, FDA has found numerous products promoted as “all natural” but that contain hidden and dangerously high doses of prescription drug ingredients or even untested active artificial ingredients.

  • “Miracle cure.” Alarms should go off when you see this claim or others like it such as, “new discovery,” “scientific breakthrough” or “secret ingredient.” If a real cure for a serious disease were discovered, it would be widely reported through the media and prescribed by health professionals—not buried in print ads, TV infomercials or on Internet sites.

  • Conspiracy theories. Claims like “The pharmaceutical industry and the government are working together to hide information about a miracle cure” are always untrue and unfounded. These statements are used to distract consumers from the obvious, common-sense questions about the so-called miracle cure.

The rise of the internet means that we need to be very careful what we believe, particularly when the term ‘fake news’ is abundant.  The people who work in this ‘dark’ industry are very clever, playing on the mind and fears of those who suffer from cancer and other illnesses which they claim they can cure. Many of them are easy to spot or at least attract your suspicion as you can see above.  I’m concerned that some of them make their way onto patient forums unchallenged by the administrators (leave those groups, they are a danger to your health).  Here’s something you’re probably not aware of….. I am targeted weekly by people and organisations who want me to advertise their ‘product’ to you guys, some of them are very dubious indeed.  I have a “no selling” rule on my site so it’s easy for me to reject anyone approaching me in this way – the very dubious are blocked immediately.

See an article where this post was featured ……  Click Here

I will never share this sort of thing on my site and I even check official looking mainstream media articles for the background scientific data before I would share here.  For me, regardless of the headline or post picture, this is where credibility comes in.  Often (whilst everyone else is sharing), I wait on informed comment from credible organisations such as Cancer Research UK who very frequently have to dampen down the excitement caused by mainstream media ‘headlines’ by providing a more balanced and evidence based view.  I’ve blogged before about Cancer Research UK in the post The trouble with the NET (Part 1), The trouble with the NET (Part 2) (with mention of Steve Jobs and Neuroendocrine Cancer).  I particularly like their blog 10 persistent cancer myths debunked.

Sharon said …… “This is SO important. As an RN and a NET patient, I am appalled by some of the things I see on Facebook. People facing chronic or terminal illnesses are so vulnerable. Thank you, Ronny Allan”

Be careful out there – it’s dangerous!

Thanks for reading

Chocolate – the NET effect


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I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts and macaroon are all on my list of favourites.  In terms of desserts, I love those too – ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn’t complete without a biscuit (or three….). Don’t get me wrong, I’m not stuffing my face with sweet stuff 24/7, however I do need my sugar ‘fix’ now and then. I’m not a large person, I’m small ‘framed’ and although I was starting to look a bit ‘chubby’ early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that.

Coping with cancer is hard and it can lead to certain lifestyle changes including diet. This is also hard! Coping with the amount of available and contradictory dietary information on cancer is challenging too!  There is also significant ‘chatter’ suggesting that sugar ‘fuels’ cancer cells.  Apparently there are more than one million websites capitalising on this fear but virtually none offering any science.  However, if you check reputable websites such as the main US and UK research agencies, you will see this link has not been scientifically proven and this claim is debunked on many reputable cancer websites in their lists of ‘cancer myths’.  Of course the situation is not helped by the wide circulation of these myths by the misinformed via social media – we’ve all seen these haven’t we?

I’m not saying that sugar is a good thing but like many other facets of modern lifestyle, too much of a good thing won’t be good for long.  The last thing any cancer patient wants is (yet) another debilitating or long-term chronic illness, something always in the back of my mind. I now watch what I eat although I try to keep a balance so that I can still enjoy some of my favourite foods – my food diary helps identify the ‘culprits’.  I had actually cut down on sugar before I was diagnosed, it’s addictive so it can be hard work!

So are sweets dangerous for a Neuroendocrine cancer patient? Like a lot of other things, in moderation they probably don’t do any harm but that’s based on my own experience. The amount of specific amines in foods can be a useful guide to how much you eat.  Please note not everyone has bad reactions and foods high in these amines do not fuel tumour growth!  Moreover, the only time you should really avoid these high amine foods is just prior to a 5HIAA test (unless you have a consistently bad reaction to them of course).  Chocolate is said to be “moderately high” in tyramine, dopamine, xanthenes and theobromine.  One size doesn’t fit all though and NET nutrition guides emphasise the amount will often matter more than the food itself. I will therefore continue to eat small amounts 😃 If you want to learn more about NET nutrition – read here.

I think sweeet stuff is more dangerous for those at risk of diabetes more than any potential syndrome effect.  Read more about Diabetes and NETs by clicking here.

Let me complete the blog with a recent personal incident regarding chocolate indicating there is a dark side to it (no pun intended!).  I cracked a tooth whilst eating a piece of chocolate in 2014.  I never found the broken piece so I assumed I’d swallowed it.  I kept a lookout for a few days but no sign and I presumed I just missed it.  However, 32 days later, my regular surveillance CT scan revealed an “ingested foreign body or ‘entrolith’ within a loop of the small bowel”.  A bit of a worry given the amount of surgery I’ve had.  My Consultant said it would eventually work its way out of the body naturally and it did.  Phew!

Apologies to anyone unable to eat any chocolate without an adverse reaction 😡

Thanks for reading

Ronny

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