The 3rd Perspective

In the spheres of skepticism and alternative health there are two main perspectives we encounter:

The ‘good’ and the ‘bad’

1)      That of the incredulous skeptic who insists all is bullshit, gets angry at the quacks and tries to stop them peddling rubbish at gullible people.

2)      The alt med proponents; be they sellers or consumers, they aggressively try to persuade you that it works and big pharma/your doctor are lying to you and the global conspiracy has suppressed all the ‘natural cures’.

Of course there are various severities of those views, stronger and milder, but they’re the most prominent types.

The Ugly?

However, there is a point of view that receives less attention. The sufferers of chronic incurable conditions whose friends and family, often merely out of care and concern, insist on telling them about this or that treatment/remedy/ritual/product that will make them better or even cure them.

Once or twice these suggestions can be laughed off or you can humour the person, but after a while it becomes more difficult to ignore.

One of my best internet friends (we’ve never met [Edit 2014: we have now!] but have talked for years) has Ehlers-Danlos syndrome (EDS), a rare genetic disorder that affects connective tissue and causes frequent and painful dislocations and many other complications, depending on the exact mutation involved, that can make life very difficult.

Recently she’s expressed extreme frustration at all the people sending her articles about things that will cure or make her feel better. She suffers from other conditions as well, including Crohn’s disease, which gives the obsessive alt medders even more ammunition. I’m going to use her words (with her permission) because they convey the feeling better than my commentary would.

Here’s your anecdotal evidence

“I now have three people trying to convince me that eating right (read bizarre hippie stuff) will “cure” my EDS. Yes cure the syndrome I have, which is caused by a faulty gene I was born with.

I’ve to boil a chicken for at least 24 hours, until the collagen in its joints breaks down, because consuming that will cure me. To think I’ve wasted all this time going to doctors who’ve only studied the condition for years and know how genes work. I should have been chatting to this woman who read a page on the internet! It had nothing to do with EDS but her logic is sound.

Until this cure kicks in, I’ve to make an “elixir” of grains which have been fermented in raw milk from a pastured cow, raw honey, chillies, vinegar and mixed aromatic spices, which has been left to stand in a dark cupboard. I’ve to make it on the night of a new moon and allow it to brew until the next new moon. I then swallow a few spoonfuls several times a day. This will build up my strength, prevent pain and stop me from catching any viruses. It’s been proven to work. The guy whose website it’s on has posted several testimonies from people who tried it (the ones who didn’t die one assumes).

I’m only in pain though because I take painkillers (amazing how that works, I thought I didn’t start taking them until I was in pain!). Oh and my genetic abnormality (that I was born with) was caused by my being fed that poison called baby milk and getting the rubella vaccine (after I was born).

Another concerned friend enlightened me with the fact that if I consume large quantities of raw milk, raw butter and raw eggs, again from those “pastured” animals, along with “good meat”, more fermented grains and fermented beans, I will cure both my Crohn’s and psoriasis pretty much immediately. She has a friend who did it and cured herself and all her children. Those idiot doctors are just trying to make money so they hide the truth from us. There are several websites that prove this too.

Yet another friend knows of an homeopathic pill which will also cure my psoriasis. Yup, expensive water on sugar pills, plus fermented beans, will cure my autoimmune diseases.”

(To jump in here myself – my friend is obviously very sensible and intelligent, she knows all this is nonsense. But not everyone has that advantage and there are a lot of vulnerable people looking for advice and support online, including very seriously ill individuals…)

Dangerous advice

“A woman posted on a forum looking for advice. She has breast cancer and breastfeeds. She’s about to start chemo and radiotherapy so has to stop feeding her baby this way. Her baby refuses to take a bottle though and frequently uses the breast for comfort but won’t take a dummy. What should she do to help him adjust? Well these educated women leapt in to help:

DO NOT go for chemo or radiotherapy, it kills more people than they let you know. Instead, go to this website or that website where they have “proven” you can cure cancer with the right diet. All you need is this combination of supplements and drink lots of vegetable juice. Don’t go back to your doctor, this man has a Facebook page that explains how to cure cancer naturally.

The best one?

You have lots of time before you need to worry, don’t trust your doctor. It’s much safer to use this diet.

Apparently, just by reading some website she trundled across one day, this woman is able to asses the progression and stage of your cancer and determine how much danger you’re in. Since she obviously knows more than any oncologist (well have you ever heard of one with this amazing skill?) I think we should all listen to her. Damn the big pharmaceutical companies and their sinister plot to suppress this life-saving knowledge. All it takes is some fermented grains, the tumor will evaporate and all remaining cancerous cells will reverse-mutate into happy ones again.

Seriously there were so many people claiming this stuff. It was scary. I hope this poor woman has the sense to ignore them. How vile can you get?  They are risking the life of a woman, with very young children, a woman they don’t even know! All because of their paranoia and their hatred of doctors and drug companies.

Oh and don’t get me started on their claims about what chiropractic can do. So many, Americans especially, believe in chiropractic and homeopathy. I wonder if they have ever actually looked at how these “treatments” are supposed to work? It’s the most surreal nonsense ever. Someone did say I should go to a chiropractor for my Crohn’s once. Of course, it’s obvious, cracking my spine is sure to stop my immune system from attacking my gut.

I know people on Facebook who take their newborn babies to chiropractors. It’s madness. Why the hell would you trust some glorified massage therapist to manipulate your baby’s spine? At best it’s painful and scary for them. God knows what they could accidentally do.

Then there are my ‘real life’ friends who keep trying to convince me I should let them do Reiki on me. It’s so logical, have someone hold their hands somewhere near you while they think really hard. I bet I can stop taking my pills after just a couple of sessions.”

I’m not stupid

“I know it comes from them wanting to help but I think it’s also that they want to show how much they “know”. They’re also saying that they know much better than me, the person who has to live with these conditions, and implying that I haven’t bothered to do any research. If I had, then of course I would have come to the same conclusion as them.

If anyone dares challenge their opinions, it’s claimed that you just haven’t done enough research. Apparently doctors do not use evidence based information in their treatments. I had one person tell me that some people want to heal themselves, others just want to treat the symptoms. Basically saying that my choice of conventional medication and therapies is stupid. I actually get pitied for trusting the doctors who have specialised in my disease for most of their lives. Who have seen thousands of people like me and have been able to compare their histories, eating habits and symptoms.

It’s draining and sometimes offensive. I don’t want to upset anyone by asking them to shut up about this stuff, so I bite my tongue but it gets to me after a while. I am not an idiot and I’m not naive. I am doing what I believe is best for me and for my family. I’m sick of the attitude and frustrated that they don’t respect my choices. Especially considering the stuff they choose to believe is based on bizarre, illogical claims.

At best their repeated claims are annoying and frustrating. At worst they’re downright dangerous. I don’t have an annoying cramp or a case of the runs. I have a very serious disease which almost killed me. It will not go away and there is every chance my life will be in danger again. If they hadn’t gotten my immune system under control, it would have destroyed my bowel. Now imagine that I had been determined to not take any of these “toxic” drugs. My body could have been so badly diseased that I couldn’t recover, that’s if I didn’t starve to death.

The only reason I am able to eat now is that I take two different pills, three times every day, which stop me rejecting everything I eat and drink. Trying to digest pulses would be so dangerous for me. Yet these people insist it’s what I need to do to get better. Thank god I know enough about my body and my disease that I haven’t tried it.

What if I didn’t know that? What if that poor women with cancer isn’t smart enough to immediately dismiss everything she was told? It was all presented as fact.

She also has issues with the amount of prayers people are offering, something I agree with but not everyone will and not as potentially dangerous as the kinds of things discussed here – so I’ll leave that out for now. Another popular one, especially on Facebook, at the moment is chemtrails. Sigh.

Not only risking yourself

While the stories of people choosing woo to treat their own conditions is sad in itself, worse still is people forcing it upon their children, potentially risking their lives.

“One of my ‘friends’ daughters developed a severe rash, really nasty. It seemed allergic. She decided not to get it treated at all. Instead she dabbed breast milk on it and left her body to fight it. She actually risked her daughter, not herself. Refused to get it checked even though it was horrendous. She posted photos of it in her blog. It spread over her entire body, which was all swollen. Her face swelled badly, closing her eyes.
She knows better than any doctor though. The breastfeeding, no-vaxing mothers all talk about how amazingly healthy their children are…”

In addition, not only do these attitudes endanger them and their children, but other people’s as well. Declining herd immunity means we have seen resurgences of whooping cough and measles, for example.

Yet now, people are trying to promote recovery from Andrew Wakefield‘s fraudulent claims in the form of publicly-available written accounts, our libel laws are once again an impediment – fascinating and disturbing that the solicitor who paid Wakefield is also the director of the Society of Homeopaths, considering homeopathic measles ‘vaccines’ have been under scrutiny of late (on Newsnight, for example). Just sayin’.

We’ve a very long way to go.

I consider myself a very tolerant person but it is so so hard sometimes. When I’m repeatedly confronted by this idiocy it weighs me down. The religious nonsense is very hard. Even the ones who are otherwise nice people are tainted by their faith. They’re closed-minded, judgemental, bigoted, condescending and rude. Not to mention completely irrational and illogical, willing to dismiss extremely obvious facts if they even slightly contradict the doctrine.

25 thoughts on “The 3rd Perspective

  1. What really amazes me as a completely uneducated person is just how educated the people are who are pushing this nonsense. I have had trained nurses recommend homoeopathy for psoriasis,pharmacists have recommended magnetic bracelets for my arthritic knee and a woman with a degree in Embryology and developmental biology said magic hand-waving (reiki) might help my MS.
    Does autoimmunity act like a weirdo magnet ? or is it just a that real medicine can’t yet ‘cure’ so they leap in to make cash from fools.

  2. This piece has been so well written and every point so perfectly made, there is nothing much to add!

    Excellent writing. Very moving. Scary.

    And it perfectly demonstrates why skeptics do what they do, and why the need to continue doing what they do: because alt med isn’t harmless.

  3. Nice post – and certainly an important perspective to consider.

    However, there is 4th way – by far and aware the most populous and indeed popular way: that of complete and utter apathy.

    Most of the population couldn’t give a stuff what X down the street used to ‘cure’ their hayfever or whatever – this is perhaps the biggest hurdle that skeptics & sitps have to overcome. In order for policy makers to budge on issues such as altmed regulation, there has to be political capital to be made (a downside of democracy – don’t get me started 😉 ) – and with the majority of people suffering from apathy, we need to find a way to generate sufficient capital.

    One way is to get people to better understand what is out there and get them to give a damn – step in folks like 1023, Sense about Science and maybe the Nightingale Collaboration.

    And you. For writing/reading this blogpost 🙂

  4. This. This. This. This is what makes me angry. Unnecessary suffering at the hands of the well-meaning (sometimes), but utterly misguided. Medicine is not perfect; scientists are not perfect; doctors are not perfect, and they don’t claim they are. But they are a damned sight better option than the pedlars of false hope, ignorance and blind faith in magic cures.

    Thank you for posting your good friend’s wise words, Noodlemaz.

  5. Attismum

    Hi, I wanted to introduce myself as the friend whose perspective Noodlemaz decided to highlight.
    First of all, thank you for the comments.

    This started off as me venting to a good friend (who can sometimes feel like my only sane one) about the frustrations of trying to be polite while being bombarded with ridiculous altmed suggestions. When Noddlemaz suggested it be added to the blog I immediately agreed after making sure it wasn’t going to hurt the feelings of people I do actually care about, despite not respecting some of their opinions. I checked that they don’t follow this blog.
    It seemed like a good chance to get this side out there. I sometimes feel like the proverbial pebble in the fast flowing stream. Constantly battered and feeling pretty much drowned by the unending flow of “helpful” information from people who claim to care.
    The implication of all these tips being that I’m not smart enough to have researched my own diseases and syndrome. The fact that I take advice and medications from “allopathic” practitioners is considered naive and uneducated.
    It hurts, it’s offensive, it is stressful and it’s wearing me smooth. I don’t want to be rude, I don’t want to tell people I think their choices are idiotic but that’s how I feel. Fermented grains?! If I eat Wheetabix I end up curled up on the floor begging to die (true story), I can’t eat most grains and cereals. None of this is considered. All that’s taken into account is what they read soemwhere once. No questions asked about my personal condition and how I’m affected. I may as well drink bleach.

    I’m commenting because I want to ask a favour of those of you reading. If you weren’t already planning to, please share this. A lot of you will be followed by argumentative altmed trolls on Twitter or your blogs. Please give them this side to chew over.
    To any altmed lovers reading; please stop pushing this on people who have made their “allopathic” choices. We’re not idiots and we’re not to be pitied. I’m only alive to listen to your recommendations because of those very doctors and medicines and I want to be alive to watch my kids grow up, so I will keep on taking their “poisons”. If you HAVE to give your opinion to someone like me, leave it at that. Don’t then follow up and harrass us with “Have you done it yet?”. We’re adults, we can choose.
    You may not see at as harrassing, we do. Imagine the shoe on the other foot. Imagine I was forcing my medical opinion down your neck constantly while you tried hard not to hurt me, stress adding to your pain and sickness.

    Thanks for the chance to talk.

    1. Richard Manns

      It’s always your choice, but maybe it would be good to be “rude”.

      Perhaps being nice to them simply encourages them? Negative reinforcement is, perhaps, key.

      It’s always interesting to hear stories from people like you, as most of us are reasonably healthy and therefore not bombarded with this. Perhaps it’s even the flip-side of the belief that these treatments “can do no harm”; this is a licence to vigorously promote themselves, with the moral shield of firm belief. A bit like an evangelising religion, perhaps?

      1. Attismum

        There are complicated reasons why I have to keep these people on side. Not simply that I want to be polite, although I’m the sort of person who finds it extremely hard not to be polite. Although I’m unable to work, I do promote some causes and work with some charities and individuals to source information and contacts. It’s a close-knit community and if I was to be offensive to a couple of members it would make things very difficult. Unfortunately my pet cause attracts a lot of these people, something which I do think hinders its mainstream acceptance. A lot of these people though are well known bloggers and outspoken advocates who have a lot of sway with thousands of others. I need their help at present to build on my contact and resource base and to gather support from large numbers.
        So I bite my tongue and hope they give up.
        I did want this to show however that the claim that these treatments “do no harm” is spurious. Not only in the delay of genuine treatments but to the psychological and emotional wellbeing of those like me.

  6. Clio

    Excellent post. I’m left reeling but he unsolicited advice to eschew medial treatment for cancer! Do these people have any personal responsibility for the consequences of their advice? The same goes for homeopaths giving their versions of vaccines.
    That is, if there is a tragedy as a consequence of some following their advice, would they be, could they be, legally culpable?

    1. Anushka

      No. For example, if one publishes a book against vaccination and medicine, and someone adopts the author’s phylosophy and dies – the author is not responsible. With the freedom of speech, every idiot can preach whatever they like – it’s a matter of personal choice whether to follow a given practice or not. I have encountered homeopathy books which explicitly say : “Parents are wiser than doctors”, “How doctors can make healthy kids sick” (“How to Raise a Healthy Child in Spite of Your Doctor”, Robert S. Mendelsohn M.D.)….

  7. bendingback

    I also have EDS and a chiari malformation. It took me a long time to find this out and in the process I’ve pretty much lost everything. Traditional medicine can be just as shortsighted when it comes to things they’re not used to encountering.
    While it gives me some measure of relief to be able to put a name to what I have, with no treatment options, no cure, and a good chunk of the medical population that doesn’t even want to recognize these issues, it doesn’t feel like much of a win.
    Now I don’t even bother trying to get help anymore. It’s just not worth it.

  8. Amanda T

    I think the best thing anyone can do is do research.

    Sometimes, alt med works. Some times doctors and medicine help. I have a friend who without medication would not have the mental energy to get out of bed in the morning. Me? Hormones balanced with an herbal tea and that gets me through the day.

    And that’s the point–everyone is different.

    And more–there is no magic cure for any thing and everything and sometimes the doctors have the best treatment option possible.

    If you want to help yourself feel even a bit better, do research and ask questions and find your own way, but do not believe in “magic cures” or “a certain diet” will cure you. If there was, the medical field would not exist and no one would be sick.

  9. Charlene Hamilton

    Let me introduce you to perspective #4: Middle Ground. We’re the people who are willing to examine alternative therapies, know which ones are of some use and which ones stink, *and* smart enough to go to conventional medicine for the things that alternative medicine can’t touch. We’re the ones who will try baby steps before hauling in the big guns. We trust science, and get that sometimes there’s things science doesn’t know. We research, we think critically, we practice informed decision making.
    And we get treated like crap from both sides- to the skeptics we’re quacks, enablers, deluded- no matter what evidence we produce to the contrary. If we use any of THOSE TREATMENTS, we must be idiots. To the alternuts we’re double agents, heretics, betraying everything for Big Pharma and the medical conspiracy of the week, we’ve caved into THOSE PEOPLE and are just shills.

    Just once it would be nice to be able to do some of that research without being treated like a pariah by everyone.

  10. Rhiosace

    Ive had this my entire life. Especially with my daughter who is also chronically ill. From family members and friends who just want to “help”. Crohn’s is one we suffer with, diet helps, “helps” being an important word. It doesnt cure, but its more like “I cant eat xxx because this will happen so i exclude it from my diet” certainly cannot tolerate the cures suggested or grains. But as one website I said reads “You need to eat the poison to be immune from it”. It sickens me that people who are desperate, and have no where to turn are being turned away from their GP’s and medical people. If someone said to me without my scientific background that “if you do x, x and x, it will cure your daughter” I’d certainly take it in an instant. Thats the point of desperation you come to, and its absolutely sickening that these “cures” are ones which don’t even help.
    I even tried some, myself, to shut people up. Because if you don’t they always say “Oh, you obviously don’t want to get better because you wont try it”.
    The whole point in the comment, “A parent knows their child best, better than doctors” is part true, I know people in a similar situation to me, and until my daughter had dropped a lot of weight, and failed to grow, I wasnt taken notice of, was just given the title of “neurotic”. But I just kept going back to my doctors, and asked to see new ones. Eventually they said, yes, we can see theres something wrong here.
    Children, and especially their mothers, know instinctively when something is out of place, children act completely different, but thats not to say doctors are wrong, more, doctors must see thousands of worried parents, and its hard to tell which ones are actually sick, especially when they are so young. They just need a push.
    The best we can do is research yes, but we’d have to put controls on google first. If you type in Crohns cure, look at what comes up first. Natural remedy websites. They should be shut down. They are not backed up by medical science, and are fooling desperate people into not seeing their doctors. Yes, you’d have to have a screw loose to believe it. But all screws are loose when you are sick, and given a rubbish prognosis for your entire life, however long that is. And if you’re a worried parent, you’d do anything to make your child better.
    I’m a naturally born skeptic you couldnt fool me about anything, not every human is though, thats the problem.
    excellent post. Touched on the problems of my entire life.

  11. Pingback: Pulled It Outta My Ass » Blog Archive » The astounding arrogance of dangerous advice.

  12. spoonfulofsugar

    This a great post, thanks for sharing. I’m always going on about how ridiculous and dangerous alternative medicine is to my friends but I had to tone it down ’cause I ended up preaching all the time…which wasn’t the effect I was going for (I wouldn’t want to sound like those alt med pushers…)

    I just get upset when I see fraudsters like Andrew Wakefield cause a significant increase in preventable diseases – we’ve decoded the human genome and yet children are dying of diseases that 40 years ago were all but eradicated.

    And of course it is very moving to hear a story like that of the above, someone who really needs medicine and science and is being forced to listen to little more than superstition and witchcraft by some of those around her.

    I’ve found that one of the best tactics against junk medicine is humour – having been a bit preachy about such subjects in the past, I have found people are far more receptive if you point out how silly and nonsensical some of these alternative medicines are. If you can manage to get them sounding as stupid, outrageous and illogical as they really are then people will think twice about them, especially if the time comes when they really need scientific medicine.

    By the way, the Google ad at the top of this blog is for booking an hour of reiki in London. Sounds like a bargain at £35!

  13. Many thanks for all the great comments and shares, guys 🙂

    I do get a lot of ironic Google ads, it seems.

    @Spoonfulofsugar yes, Wakefield’s case is particularly pertinent. I wrote up a talk given by the journalist that worked hard to expose him, Brian Deer, which you can find here:

    @Charlene: your proposed perspective is kind of what I was trying to cover in saying that there are of course more and less fervent people falling into categories 1 or 2. There are, however, very few alternative remedies – most of those being in the herbal category, since this is where much of modern medicine comes from anyway and the analysis of all the things people have been using hasn’t been completed – that actually work at all, let alone better than a medical option where one is available.

    I can highly recommend Simon Singh & Edzard Ernst’s book Trick or Treatment for more in this vein – it’s very well-written, sticks to the facts, it’s not preachy, but really informative.

    1. Charlene Hamilton

      That’s a good book, I have it. There are treatments/methodologies that are considered ‘alternative’ (although the trend now is to call them ‘complimentary’) that have shown effective- like, say acupuncture. Science hasn’t quite figured out how it works, and some (like the authors of the book) say it is all placebo effect; but given a choice between lying down and getting poked with needles for half an hour for my chronic migraines vs taking a pill that has a laundry list of side effects, I’ll go for the needles, first.
      Or take, for example, my profession as a childbirth educator; I spend a large about of my class talking about pain-coping practices, and the large difference between experiencing ‘pain’, and *suffering* pain. There’s tons of things you can do to keep the subjective experience of pain at a level that can be coped with. But those sorts of things are off science’s radar- there’s drugs that do the same thing, so why bother testing, why bother looking into options that are lower medical intervention? So even though I can explain the physiology behind labor pain, explain why personal perspective is so important, talk about the psychological impact of birth, and then actively demonstrate and have parents experience these skills working, because there’s almost no published papers on these skills, I get treated (in many circles) as an anti-science freak who wants women to be in horrible pain in labor so they can be ’empowered’.

  14. Charelene Hamilton said:

    There are treatments/methodologies that are considered ‘alternative’ (although the trend now is to call them ‘complimentary’) that have shown effective- like, say acupuncture.

    I didn’t know that – where did you hear it from?

  15. Natalie Sera

    My take on alternative medicine: there are 2 possibilities, 1) it doesn’t do anything, which means it’s a waste of money, time and suffering or 2) it DOES do something, in which case it needs to be studied and regulated, because powerful medicines always have side effects and unintended consequences. And I’m not taking any chances with my life and health until I have at least some evidence that it works as intended!

    1. You are bang on, Natalie.

      As Tim Minchin put it, ‘alternative medicine that works has a name… medicine’.

      Of course there are plants that will do something to you if you munch on them; that doesn’t mean you should go and munch on them. What science (combinations of all three major disciplines; chemistry to separate out chemicals, biology and physics to study the interactions and influences of those chemicals in the organism; pharmacology) allows us to do is find out what exactly it is that has an effect, if there is one, and then we can both make it safer (e.g. by taking out other chemicals that have harmful effect or interact in some unwanted way with the active ingredient, plus by regulating exactly how much you’re taking – dose is incredibly important with any drug) and more effective; sometimes we can modify the chemical to act more specifically, reducing side-effects, or more generally to target a greater number of bacteria if that’s what it does, perhaps.

      Again this is mostly to do with herbal medicine, since things like homeopathy, acupuncture, reiki etc. do not deal with active ingredients at all – it’s all basically claims of magic, which if proven to work (and they haven’t been) would break the laws of physics. There is no water memory, no set of meridian lines in the human body carrying Qi energy flows, no magic healing hand.

      The placebo effect is powerful and it plays its role in actual medicine too – it’s a big part of medicine making you feel better. But the difference from alternative medicine is that medicine actually does something extra on top of that.

  16. As a disabled (paraplegic – due to spinal cord injury), I can completely empathise with your situation, as I have faced similar. I would also include the (well-meaning) religious types, who offer either claims of recovery through prayer, or suggest it is their god’s “punishment” to an unbeliever like me. I realise it is (usually!) well meant, but there are times when I question the seemingly common practice of assuming that a disabled person is somehow public property, & complete strangers feel compelled to ask about my medical condition & history. Like many people I have standard answers, and there is a useful aspect of raising awareness, but sometimes, just sometimes I wish they would back off!!

  17. Pingback: Ask for Evidence – Miracle Cures | Purely a figment of your imagination

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