To think that alternative medicine practitioners and websites need urgent regulation? *trigger warning - cancer*

[SinkGirl]

Saw this story this morning and it broke my heart
metro.co.uk/2019/06/03/mum-went-vegan-shunned-nhs-treatment-dies-cancer-9777871/

I do not blame or judge this woman. I blame and judge the people making an absolute fortune from exploiting the fears of people like her. I blame the websites that tell outright lies in order to flog ineffective supplements and regimens to sick people.

I dread to think how much money the family must have spent on these alternative treatments and scans - my own mother spent more than £40k in her final 18 months on everything from (illegal) cannabis oil made in some blokes kitchen to distance energy healing sessions (exactly what it sounds like). She even went to a European country for a private session with the creator of some absolutely nonsensical therapy.

She had all this alongside nhs treatment, so when she got sicker they blamed that.

When she was dying in a hospice, they blamed her being in a hospice.

They were still calling trying to get a bit more cash out of her in the hours before she died.

These people and websites absolutely pray on vulnerable people. How is this allowed to go on unchecked? What can be done about it?

I’m heartbroken that today there’s a little girl who’s lost her mum, when free treatment readily available to her could have saved her life.

These charlatans disgust me, and I can’t believe that people can’t see that they are in it for the money just as much as any drug company.

For those who are genuine and don’t lie about the evidence for their treatments, there shouldn’t be a problem as they wouldn’t make unsubstantiated claims, right?

AIBU?

I think they can be used as "complimentary" therapy - to be used alongside traditional treatment and seen as having a placebo effect (magickal thinking) which might help with recovery.

We don't really understand fully how the mind works yet/the placebo effect and the whole mind over matter thing.

I think complimentary therapies can help but obviously not alone.

It's illegal in this country to advertise that you can cure cancer, it's in the T+Cs or code of ethics of practitioner insurance.

e.g. from the Reiki Association code of ethics "Claims, whether explicit or implied, verbally or in writing, implying cure of any named disease must be avoided."

If you see anyone in the UK saying or advertising that they can cure cancer, then by all means take action.

If she had known the truth - that medical treatment was her only chance of surviving - you don’t know what choices she would have made

Her consultants would've made it perfectly clear to her inno uncertain terms. She just didn't want to believe that 'truth' and that was up to her ultimately.

I am totally with you on any therapy that claims to cure cancer but I don't actually think that was what happened here.

**in no

www.webmd.com/vitamins/ai/ingredientmono-1190/apricot-kernel
there is a lot more on the web about apricot kernels being poisonous & not just one form of poison please get him to read this if you can - use of apricot kernels harks back to 1920's when cancer treatment was almost worse than the disease & even then they realized fairly quickly that it could kill you (some of the poisons are slow poisons & accumulative - people use to eat arsenic in early Victorian times for health (!) but he wouldn't do that surely.

Have you heard of the Gerson therapy?
They absolutely claim they can cure cancer.

There was a really sad case in Australia recently of a young woman who suffered from a very rare slow-developing cancer. She initially had chemo and it went into remission but came back a couple of years later.
Further treatment would have involved arm and shoulder amputation, which she refused.

She followed the Gerson route instead, launched a blog and became famous as the 'wellness warrior'.
For a while she claimed she had cured herself of cancer.
Until the cancer caught up with her and her photos became more and more censored and she sadly died.
Her family deleted her blog after her death.

The Gerson people blamed her death on her initial chemo- funny they didn't mention it to her when she was seemingly healthy and cured and blogging about them.

Saddest of all her mother had breast cancer and had also followed the protocol. She died a year before her daughter.

Her poor father had to watch his wife and daughter die in pain...

Oh many are very careful with their wording - they won’t explicitly state they can, but then they’ll have totally real and not at all made up testimonials about how they’ve been cured of x, y and z

Then there’s the whole narrative of “it didn’t work for them because they didn’t want to get better”, “it will only work if you believe it so they must not have believed it” bullshit. I remember my mum going to some healing seminar and telling me about a man who was there who was in a lot of pain and kept saying that the exercises weren’t doing anything for him, so his negative mindset must have been stopping it from working (when you tell the truth in that setting, it’s a “negative mindset”, apparently - no wonder everyone nods along and says it’s all working brilliantly).

He thinks that the pharmaceutical business don't want people to know because they would lose money.
Ah, that old chestnut. Most chemo treatments are old and completely unprofitable now, to the point where there’s a risk of some no longer being produced at all.

This idea that the pharmaceutical industry are only about the money with their billions spent on R&D and proving things work whereas alternative medicine is full of people working for nothing out of the goodness of their hearts... it’s bonkers. At one point my mum was paying $400 for 30 minutes of distance healing which involved a text message saying treatment was starting, my mum sitting in a chair for 30 minutes while being “sent energy”’from a man thousands of miles away and then a phone call where she’d tell him how wonderful she felt. What can you even say to that?

Her consultants would've made it perfectly clear to her inno uncertain terms. She just didn't want to believe that 'truth' and that was up to her ultimately.

But people in that mindset don’t trust what doctors tell them - she’d already been brainwashed to believe that anything doctors say is a lie, a way of making money at the expense of your health. Sadly I saw this in action myself. My mum hasn’t a pretty severe case of confirmation bias - the very fact that her doctors recommended chemo made her distrust them even more. She believed the whole “cancer doesn’t kill people but chemo does” rhetoric that’s littered throughout the alternative medicine web presence. It’s very alluring when you’re facing such invasive and difficult treatment.

Yes, I remember the “wellness warrior” well. Awful.

My mum used to push all this stuff on me for various medical issues I have and say “if I can cure myself of cancer, you can definitely treat endometriosis” etc. It was extremely difficult to be supportive to be honest. But then she would say that she only had chemo for us, which I don’t believe - she was an intelligent woman, I think deep down somewhere she knew she couldn’t trust what these people said. But she was desperate and because she felt much more well than she thought she should, she was convinced it was working.

there is a lot more on the web about apricot kernels being poisonous & not just one form of poison please get him to read this if you can

I have tried but he says the fact that they are a bit poisonous is what makes them work! Like chemotherapy makes you ill so you get better

I genuinely was quite close to breaking up with him when he first came out with all this claptrap when we were dating, but it seemed silly to break up over something hypothetical when everything else was so good and if he does get cancer I'm going to do my best to pressure him into taking the medicine for his own sake and the sake of our child. I'm keeping my fingers crossed that if either of us gets sick that it'll be me because I'll deal with it better.

I am in a minority here, but here goes ...

We are teaching our kids (and arguing about it) about the fact that there is more to a relationship than just a man and a woman ...

Why doesn’t our science and biology curriculum (like the history, english and other ‘humanities’ subjects) also have a part about critical thinking towards important subjects like ‘nutrition’, ‘dieting’ and medicine. Our kids come home spouting about having to learn balancing equations, anatomy and other rubbish and fall for some ‘diet pill’ containing ‘natural ingredients’ that somehow will make fat fall off without an iota of exercise or dietary limitation.

If we don’t give our kids the tools to ask the right questions about medicine and science how the hell can we expect them not to fall for the snake oil ..

I agree OP

I think its similar to the myths and lies that surround the anti tax movement.

People do their own 'research' and there are a lot of legitimate sounding studies on the internet that are very convincing. They arent conducted in a way to have any statistical significance though and are generally biased and funded by bodies who sell the recommended treatment. The trouble is you actually need a good working knowledge of stats to be able to understand what's a good study and what isn't - it isn't as easy as it sounds. So I can see why a lot of people reach these conclusions. Saying 9 out of 10 people in a study were cancer free after 6 months of using s product isn't directly making any claims but doesnt mean anything without knowing about the study however I can see why people think that means the product cures cancer

What a selfish woman.

reading the article, it sounds like she made an active choice though.

when my dad had cancer, there was a man in his room with liver cancer who decided that NHS treatment wasn't helping and that he was going abroad for some alternative treatment.

if someone makes that decision, knowing that the "alternative" isn't licenced and vetted the same way, what can you do? The person has made a free choice.

my dad was very upset, the man was in his 60s and not dying like my dad - but dad was convinced that coming off treatment would lead to the man dying earlier while apparently trying to extend his life. But....cognitive dissonance. What can you do?

I so recommend the Bad Science book ...

Yadnbu OP. To me this is a massive public health crisis. I'm currently ill and I've attracted the attention of a few acquaintances plying their services at a price. It's almost like an mlm in my area, short 'courses' to qualify in whatnot and then women targeting women, the whole magical thinking/victim blaming/undermining etc.
I've also seen passive aggression towards using conventional medical treatment. It's like a death cult.

This is the sort of thing you get when you google “natural cancer cures” draxe.com/10-natural-cancer-treatments-hidden-cures/

Websites, written by a “doctor” explaining how they cured their mother with alternative medicine, then a quick disclaimer saying “now I’m not saying this cured her” but I’m sure as hell implying it strongly then “here’s how we did it”.

I agree, kids need to be taught critical thinking skills. It’s a crisis in action, I agree it’s just like anti-vax and I also agree that as soon as you get sick suddenly all sorts of people pop up to peddle their snake oil bullshit.

I don’t blame her though. The treatments proposed are frightening and you have to remember how convincing these people are. If you had a small child and you had been convinced by a bunch of money grabbing charlatans that chemo would kill you but cancer can be cured without it, and you really believed them, what would you do?

I’d never make the same choices because my experiences mean I’ve seen these people for what they are. I understand how people get sucked in though

Sadly a lady I know, long term vegan just developed cancer - her diet did nothing to protect her from it.

This is not just cancer though, it is all sorts, a recent thing I have seen is around Alzheimers disease, 'cures' for early cognitive impairment and genetic testing, for those with a family history. Such as this one proclaiming the "End of Alzheimers" www.paleo-britain.co.uk/the-bredesen-protocol-for-alzheimers-disease/

Friends and colleagues (his!) keep sending DH information on cancer diets, alternative treatments, etc. He asks if I want him to pass them on, I say no. Funnily enough no one sends them to me as they probably know my reaction won't be very polite.

I was diagnosed with a rare, aggressive form of breast cancer a couple of months ago. Ten years ago the prognosis would have been very bad. My doctors are aiming to have me cancer free within a year with Chemo followed by a mastectomy then radiotherapy. I have researched extensively and am confident that I am being offered the medical protocol that is seen as best treatment worldwide. Yes, Chemo sucks. I had my fifth round out of eight today and am not feeling crash hot (spending way too much time on MN as I can't concentrate on anything else) but by mid July that box will be ticked, next thing to do is a mastectomy- three days in hospital then a few weeks recovery before radiotherapy- two things down one to go etc.

This may not be popular but actually I struggle to understand that woman's decision. I don't want to leave my much older kids to grow up without their mum, the thing I struggle most with is watching my kids struggle with this whole thing. Having my body pumped full of poison for four months of my life is just taking one for the team.

I’m so sorry Snows - I hope you’re coping okay. Such a difficult treatment to go through, physically and mentally. Sending

I struggle with it too but I’ve seen how intelligent people are sucked in. I think, if this industry and the related websites and publications didn’t exist, there’d be very little chance that someone with a curable cancer would refuse treatment that will be curative in almost all circumstances. It’s difficult for me not to blame the people who knowingly pump this excrement into the world in order to profit from vulnerable people. We also have to remember that not everyone is intelligent or educated or able to discriminate between valid and invalid information.

I've seen some very clever people taken in by this. Regardless of how well meaning 'practitioners' are it is so dangerous. There must be so many cases we never hear about where people have refused or delayed treatment.