Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"
Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about 'advice' and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice. I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while the issues raised in this post could certainly apply to badly moderated online (and offline) patient groups. it definitely also applies beyond them, including on social media in general. Some…
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RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy
Summary -  Many thanks for supporting my social media in March.  I remain keen to hear any suggestions of the sort of thing you would like me to research and publish.  I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances.  Miranda and her parents are determined to help others despite the loss of Miranda.  Click here or on the picture. [caption id="attachment_40842" align="aligncenter" width="640"] Click the picture to read more[/caption] My Home Page I turned it back on for a change of scenery.   Click the picture…
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Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better.  In analysis, that is a fallacy.  It’s easy to get sucked into…
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The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"
No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer.  If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.I was also interested to read a number of articles about various aspects of this modern phenomenon.  Firstly, in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual.  Not just patients who get fooled by these claims then?Much of the misinformation arrives via Facebook, and YouTube, two of the most commonly used social media tools. This article suggests a shockingly large majority of…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Survivorship
But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks.  The vast…
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