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

Dr Google will see you now

 

Searching your symptoms on the internet is

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn’t.

As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for patient issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise how difficult it can often be for a doctor faced with unusual, vague and nonsensical symptoms!

On a recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby!  

The internet is really powerful but also really dangerous.  For example if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits (e.g. fake healthcare news and cancer myths). Worried patients sometimes need help to distinguish between sensible advice and fanciful claims/ miracle cures.

When I combine my own experience with what I read on patient forums, I can see that internet searching is not for the faint of heart.  Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse.  In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet –  ‘Cyberchondriac’. 

However …..

Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers!  Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients.  It’s how we as patients exploit it that is really important.  Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office.  Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.  

The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship. 

Google-doctor-mug-300x300

Tips for online searching:

1.  Don’t actually use internet search engines if you can help it, go to a reputable site and then search that. For NETs try RonnyAllan.NET

2.  Try to be specific as possible because vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.

3. Less common conditions are less common, and minor symptoms often resolve themselves in time. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help. 

5.  If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable – check out my 8 tips article.  However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas. 

6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status, so be careful, I’ve been some complete rubbish on these sites.  Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening’. Personally, I try not to compare myself to strangers on the internet.

I will not compare myself to strangers on the internet
Graphic courtesy of Emily McDowell

OK, the lead graphic is slightly ‘tongue in cheek’ but for those who are very anxious, it’s a reality. I can see from my own group that many Neuroendocrine Cancer patients have become very adept at searching online – useful because many still need a lot of help.

Be careful out there it’s dangerous.  I have a private group for patients and caregivers where I like to ‘keep it real’. Check it out here.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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