MD on Twitter tells me to see a “real” doctor, not a “quack” naturopath

Due to nothing so much as a lack of attention to social media other than Facebook, I rarely post to Twitter intentionally. Mostly what goes on my feed (@sewbiwan) is links to my blog posts that are auto-posted for me. So I was surprised yesterday when I checked my feed today and realized I’d missed some replies. In response to my last post, I’m leaving Bastyr and moving on to a new naturopath, I saw this:

He’s referring to a blogger I enjoy and follow, Naturopathic Diaries, written by a former naturopath. Really interesting stuff, definitely worth checking out if you’ve ever had an interest in how and what naturopaths learn. Bastyr, our local naturopathic university, isn’t too happy with her and has actually sent her a cease and desist letter. I got a cease and desist letter once, for giving a business a poor review on my website (way back in ’96 – wow I’m old), so I know a little about this. I’ve read the posts Bastyr is upset about, and their letter just makes it look like the blogger is right and they’re afraid. I agree with the blog writer that it’s important information to talk about. If Bastyr is so afraid of her revealing something, then that says a lot about what they might have to hide.

You might wonder why I enjoy an anti-naturopathic blog but am seeing a naturopath. My worldview is that science is the best lens we have through which to observe the known universe, and while not perfect (just as people aren’t perfect), good scientific data trumps most things (nearly everything – I’m struggling to think of an exception), most of the time. That said, there’s theory, and there’s experience. I have experience with ten years of good medical care from smart, well-educated MDs. They are great people, with a lot of ideas, and they’ve been able to do nothing for my CFS/Fibro (I’ve been diagnosed with both).

If the theory is that evidence-based-science rules all, then I should have made some progress. Yet, since I’ve been diagnosed, I’ve gotten steadily worse over time. Does that make me say, “MDs are quacks”? No. Science can only know what it observes, and unfortunately, very few people have looked at these disorders, and what research is taking place, is still deep in trials and testing phases. The Stanford program, for instance, took me nearly a year to get into and only made me sicker (caveat: my new naturopath suspects that the Stanford antivirals program might work much better after we’ve fixed some other things). The science is baby-new and conclusions are drawn and then re-drawn on a regular basis.

Where does that leave me? Up shit creek, is where it leaves me, every single day. Every single day that I can’t hold a job, go back to school and finish my degree, take the trips I want to take (from across town to across the world), do enough chores to keep the house looking tidy, or give my kids all the experiences I want to expose them to before they grow up and leave the house.

Up shit creek is where you’ll find naturopaths. They’re used to seeing people at the end of their ropes. Both the naturopaths I saw recently said almost the same thing to me, “All I see are outliers.” If some of these MDs weren’t so busy making people who are going to see naturopaths feel like ignorant sheep, they might notice that these human beings (often very sick human beings) are going to see these “quacks” because MD’s aren’t offering them squat.

For years I avoided seeing a naturopath because I thought exactly the way this guy does. They’re quacks! Bastyr charges their naturopath students thousands of dollars to learn homeopathy. And yet, I couldn’t help but notice that the few people with chronic illness I’ve met, become friends with, or read about, who have seen improvement, have gone to see a naturopath. (Sometimes this professional, like the one I’m seeing, is a “functional medicine” naturopath, and LAAAWD, if you really want to see MD’s get their undies in a twist, talk to them about functional medicine. I dare you.)

When I finally went to see a naturopath, I was prescribed B vitamins, a turmeric supplement, an herbal supplement, and some tea. I thought, “I was right, this is nothing but junk science.” But two weeks later I began improving, and a couple weeks after that felt better than I had in years. My shock at how much lemon balm tea helps my anxiety led me to study herbal medicine again. And yes, the Andrographis Plus didn’t work – in a kind of spectacular fashion – but it was the most promising result I’d ever had from any treatment, ever.

Do I buy into some belief that naturopaths are better than MD’s for everything? No. Do I think they might have some interesting ideas about CFS? Yes. And since my insurance pays for them, which means I’m not out $$$ every time I see one, it behooves me to at least try. Not because I’m anti-science, but because I’m pro-doing-anything-to-get-better.

And so I replied.

And then he replies:

I wasn’t surprised to get this. Always, the assumption is that the person just isn’t doing it right. But what killed me was that the article he links to has outdated information! It’s wrong. It recommends the GET protocol, graded exercise, which has been shown to be based on bad science and probably hurt thousands of people. This article tells you what you need to know about that. It was truly awful.

Also ironic: his linked article is written by the National Health Service, which is Britain’s medical system. A good friend of mine lived in Britain for many years and struggled with many of the same health issues that I do (though not the same diagnosis). She finally found help with – wait for it – a functional medicine doc. My friend is an intelligent, educated, rational person, but she also found herself stuck in a system that couldn’t do much to help, so she went elsewhere and whaddya know, found someone outside the traditional system, who helped her make significant progress.

So I wrote back:

He responds:

He has no leg to stand on here. His response is basically to tell me that I should avoid quackery (which in his view is all naturopaths), and go to a REAL doctor doing evidence-based medicine. But in the same breath, he admits that “No one has good answers to CFS,” and what he suggests is “small-scale work on antiviral agents”, which is, first of all, exactly what I’ve already tried. Not that he should know my medical history, or have read my blog, but why be so arrogant to assume that I’ve not tried a “real” doctor in the past?

Not to mention, he’s proving my point: the science is still in its infancy! It’s ridiculous to tell someone “go get some evidence-based medicine” and point to some study of a few hundred Italians when this is not a standard protocol that any patient off the street can access! My own GP, a very insightful physician in a highly-rated hospital, wouldn’t prescribe me antivirals because she wasn’t aware of any of this research, nor was this approach, to her knowledge, standardized in any way. My hematologist told me the exact same thing, essentially, “I don’t know what they’re doing at Stanford, but I can’t just prescribe something to you because you say some researcher somewhere had some positive results with it.”

So I did find my way to Stanford, after a year of waiting, and a trip that cost (with plane fare) over a thousand dollars. But then this Twitter guy tells me to just go find an MD who practices “evidence-based medicine”? Because it’s that easy? Once I do that, I won’t need these “quacks” anymore?

It’s this kind of arrogance combined with ignorant assumptions that people with chronic conditions have to deal with every single day. Science has not been kind to these sorts of conditions, first mocking the people who presented with them in the first place, then finally deigning to give us a tiny slice of the research pie. That tiny slice has not yielded anywhere near enough treatment options for the nearly 3 million people with CFS.

Thanks, but no thanks. Criticize naturopathy all you want, I don’t care. I don’t take it personally. I’m not invested in naturopaths being seen as valid to anyone, and I’m happy to see pseudoscience take a beating with well-run studies and lots of data. But what I do care about is getting well, and ten years of evidence-based medicine has done absolutely nothing to help, so don’t criticize those of us whose desperation has brought us to something you look down your nose at, and don’t pretend that science has any reliable answers to CFS that are in any way accessible to the masses.

 

 

6 responses to “MD on Twitter tells me to see a “real” doctor, not a “quack” naturopath

  1. God, what a fuckhead. People like this are exactly the reason chronically ill people don’t get better, they are the reason so many with chronic illnesses are traumatised by the medical profession, and they are the reason so many turn to extremely dangerous quackery (not like you seeing a naturopath, I mean radical and harmful alternative treatment). When has talking a patient down ever helped them? Why is his immediate assumption that you’re a complete numpty, unable to even understand or remember your own medical history? And why is he talking shit about stuff he doesn’t understand, when he is so clearly decades behind on the science? Fuck.

    Liked by 1 person

  2. Everyone is an expert on Twitter. Everyone has an example that proves their point. I do, too. Fat lot of good that will do you.

    I’m going out on a limb here: I think you are the expert on you. And I wish you a road of discovery that provides inner peace and outer health. Or the reverse. Or both.

    My issues and health are so complicated by a stack of different causes and solutions, it’s a Gordian knot that really does need to be unpicked, not sliced apart. There’s not one solution to the whole situation. There never is.

    Every day above ground is a good day.

    Liked by 1 person

    • Amen to that. (Oh and if I get to choose – I’ll take both!)

      The Gordian knot is a great image to use, and it was reassuring to me that the new naturopath talked about my health issues as being interwoven and interlocked, and it will take us time to unweave them. When practitioners get overly simplistic, it (at least in my experience) inevitably leads to failure.

      Like

  3. Great post! I’m so tired of hearing arrogant MD’s boast about their pharmaceutical drugs (cleverly branded as Science-based medicine) and the “hard science” behind them including double-blind, placebo controlled studies. If the medications worked as well as advertised, then WHY are people like us STILL SICK? Science is great, but as you said, it has its limitations such as the current understanding/analysis of the available data. Plus science always changes- new things are discovered and other things thought to be fact are proven to be wrong. Moral of the story is- if “science-based medicine” works as well as MD’s claim , so many of us with chronic illness wouldn’t still be struggling. The interesting thing is many MD’s are realizing this and are beginning to implement functional medicine, complementary, and integrative medicine. Of course there are some great things modern medicine has to offer, such as antibiotics, anaesthesia, vaccines, reconstructive surgery, etc. but the group of arrogant MD’s, such as the one you wrote about in your post, need to understand that the reason we are now trying alternative medicine is because their precious “science-based medicine” failed us and turned out not to be so ‘science-y’.

    This is the first time I’ve seen your blog and I look forward to your future posts. I wish you the best in your healing journey!!

    P.s.- I suggest taking everything that Britt Marie Hermes says with a grain (tonne) of salt. I’ve seen some of her posts and she seems very disgruntled which of course, leads to bias. Upon fact checking, I noticed many of the things she says are inaccurate. Also a lot of what she says is just her opinion and blowing smoke. Maybe she thought she would make lots of money as a ND but discovered she couldn’t so now she is angry and thinks she can make more money slandering the profession. Honestly who knows, but her story has flaws and her posts contain inaccurate or skewed info so I don’t trust her.

    Like

    • Oh, pharmaceuticals, that’s a whole can of worms on its own, isn’t it? Talk about arrogance hiding bad science. It’s a billion dollar industry, which begs the question, what incentive does the economy have to get us all well and off medications?

      I take pretty much everything on the internet with a grain (tonne!) of salt! It’s a necessary habit of modern life. I do enjoy Hermes’ writing, although I haven’t fact-checked it. Most of what I read when I discovered her site was frustration with things I agreed with and thought were reasonable. What big flaws of inaccuracies have you noticed?

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  4. The truth of the matter is no one doctor has all the answers. I’m lucky, my GP admits when he’s out of his depth. In my experience, graded exercise does work, once you’ve dealt with the underlying problems. It won’t cure the problem, it will help you gain more stamina and mobility once you’re on the road to recovery. The other thing MD’s will do is put you on antidepressants and send you to cognitive behavioural therapy. Because, if they can’t find the problem, it must be all in your head.

    Liked by 1 person

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