If you were alive during 2020, you surely cannot have failed to hear the phrase, “trust the science.” You may also have heard plenty of talk about “pseudoscience”.

Specifically, I am talking about the context of our health. The world, faced by a seemingly unprecedented threat to human health, turned to science for answers. But in amongst the resulting confusion, which of the theories offered were really science, and which pseudoscience? I’m not about to answer that question, but I am going to use this blog post to discuss my personal views on science, pseudoscience and health.

Since most people reading my blog tend to be here because they’re interested in learning more about Chronic Fatigue Syndrome (CFS), I should probably start by explaining why this topic is relevant.

How are science and pseudoscience relevant to CFS?

Despite doctors diagnosing CFS in patients for many decades[1], researchers are still struggling to agree exactly what this illness is. What causes it? Which treatments are effective? Can it be cured?

How would you react if you were told you have a condition that is not understood and that you are just going to have to live with it?Would you say, “Oh, OK, that’s fine,” and just go away and struggle?

Or would you start looking for solutions?

And, if you did decide to look for solutions, where do you look? You must be aware that this puts you in a very vulnerable situation. If your life feels like hell and someone comes along offering you a solution, aren’t you likely to jump at it?

Is that solution really going to help you though? Is it backed by science? And if it is backed by science, does that mean it will work for you?

If it isn’t backed by science, does that mean this thing is actually pseudoscience? What, in fact, is pseudoscience? And does that mean it can’t help you? Could it even be dangerous?

Is it safe to search for answers?

Now, more than ever, the average human being has access to more knowledge than at any time in history. How? We simply pull out our smartphone, or head to our computer and bring up a search engine. We type in our question, and up pop loads of answers.

But as you have probably discovered, not all answers are helpful, or maybe even truthful. In response to this, we have “specialist” websites that now claim to “out” the “fake news” or “conspiracy theories”. Yet, it turns out, even those can be subject to bias, so where does that leave us?

Lost? Scared? Vulnerable? Forced to accept a debilitating condition?

Or can we simply follow the advice to, “trust the science”?

What is science, pseudoscience, and non-science?

Before you decide whether you can trust something, or whether it can help you, you need to understand what these terms actually mean.

What is science?

Science is a word derived from the Greek, meaning “knowledge.” We use it to determine how our physical world works. Now, the concept of “knowledge” is pretty big, so we have created a more precise definition. Science is a way of testing a theory to demonstrate whether or not it is “true.”

How do you do that? By designing an experiment that could prove or disprove your theory. A scientific experiment should meet certain criteria. It should take place under clearly defined parameters and it should be replicable.

 Many regard the “gold standard” of a scientific experiment as something called a “double-blind, randomised, control trial”. What does that mean?

An example of a robust scientific experiment

Let’s imagine I want to test whether a pill can cure a headache. First, I need to find people with headaches. But I have to be careful as I do that. I need to be very specific (those clearly defined parameters).

Is my pill supposed to be curing headaches in everyone, or just in a certain type of person? If I want it to work for everyone, then I need to test it on a range of people that are a good representation of the population. So that would mean, a range of ages, health conditions, genders, etc.

If I want to target a certain type of person, then I need to find test subjects that match that type. I also need to be very clear that this is what I am testing. So, if the results prove favourable, I can’t say, “this pill cures headaches”. I would have to say, “this pill cures headaches caused by x,” or, “this pill cures headaches for men over 40,” for example.

The control

Then, because I am carrying out the “gold standard” type of experiment, I need to find a control group. These are people who don’t have a headache, but are in other respects similar to the group I want to test. I’m going to give them my pill and see what it does for them.

Randomised

But wait…I’m also going to add in a “placebo” here. That would be a sugar pill, or something similar. Basically, something that is not supposed to affect a headache. It is there to try and check that whatever results I see are being caused by my pill, and not something that might have happened anyway.

I am going to randomly select who receives my headache pill and who receives the placebo. Making sure that this is random within my “test” group and also random within my “control” group.

Double blind

Then comes the “double-blind” part. Neither the people analysing the results, nor the people taking the pills are going to know who received which pill. (There will be some kind of neutral administrative team setting this up).

The idea behind this is to remove the possibility of bias. To remove the danger that the people analysing the results actually expect (or desire) the pill to work – or not work. And similarly, that the “subjects” beliefs about whether the pill will or won’t work could affect how they perceive their headache.

Basically, we are trying to remove as many variables as possible to try and arrive at an answer that tests our specific theory.

But is this experiment valid? Has it done enough to really provide us with new “knowledge”? I’ll come back to that in a moment.

What is pseudoscience?

Literally, this word means “false” (pseudo) “knowledge” (science). But where did it come from?

Karl Popper, a philosopher, is often credited with coining this term. He argued that a theory can only qualify as “scientific” if it is possible to “falsify” it as well as prove it. In other words, can you imagine a scenario in which the theory doesn’t happen.

The sun rises could be provable “scientifically” because we see it rise, and we can also imagine the possibility that one day it might not rise. (Note: the false scenario doesn’t actually have to occur – simply be a realistic possibility).

In Popper’s model, pseudoscience is simply a theory can never be falsified. It can be tested and proven in multiple ways, but never proven false. So, you might still set up an experiment like I described for my headache pill, but if the theory you are testing cannot have a “false” possibility, you are conducting research that falls under Popper’s definition of pseudoscience.

What happens when a word enters everyday life?

As often happens, the term pseudoscience has entered everyday life and started to take on new meanings. So, you may see it applied to something that is technically “not science”, rather than “pseudoscience”.

You will also see it used as short-hand for criticising or discrediting something that isn’t in agreement with the user’s viewpoint. For example, “all studies of acupuncture are pseudoscience.” Is that really true? Is it really true that we cannot falsify acupuncture? Or could it also be true that we cannot falsify acupuncture with the knowledge we have today, but it later becomes falsifiable when we gain new knowledge?

The danger here is that we move away from a desire to seek truth and end up using emotive language to dismiss anything that challenges our own world view.

The interesting point is, Karl Popper did not suggest that pseudoscience was useless or irrelevant. His aim was really to define science.

So, it may be that a “pseudoscientific” study is testing something that cannot be falsified. Does that mean that the study is useless? Or that the thing it is testing is unable to reliably help you achieve your goal? Again, I will come back to those questions in a moment.

What is non-science?

Unlike science and pseudoscience, non-science constitutes something that is not realistically seeking “knowledge”. It is seeking to prove, or defend a point of view. In other words, it has bias built into the designing of the experiment, or the analysis of the results.

For example, I could set up the experiment for my headache pill in a way that is unscientific. I might deliberately set parameters that make it more likely I will prove my headache pill is effective. In that case, my test may still be “non-science.” Whatever results emerge would not truly be adding to our human knowledge.

Surely that doesn’t actually happen? Wouldn’t reputable laboratories stop that? Wouldn’t reputable scientific journals refuse to publish the results of an experiment that wasn’t robust?

Sadly, no. Let me refer you to this blog for an account of some research into CFS that caused a debate amongst scientists and had serious consequences for patients. (Click on this link to read the account.)

Why does “non-science” exist?

In my view, it is a response to our insistence that everything must be “scientifically proven”. The arena in which you will most commonly find “non-science” is in marketing.

You’ve probably seen this type of advert: glossy images of women with luscious hair using a certain shampoo, with whatever narrative is being spoken. Then, up come the words, “90% of women think this shampoo is awesome.” Then the small-print at the end: out of a sample size 0f 20. OK, so what does that mean? About 18 women said they liked the shampoo. But who were they? Were they paid to say that? How long did they use the shampoo? Did it really wash their hair better, or did they just like the smell?

Claims like that are designed to work on our subconscious. They tap into our belief that something is OK to do if other people do it. And it’s even better because it has a % so that somehow implies there was some “science” involved in “testing” this thing for us.

I suspect most of us are aware of this sneaky kind of marketing. Perhaps we think it only happens in certain types of industry. But what if that isn’t true? What if less-than-robust science is used to get a license for distribution of a pharmaceutical drug? Surely that never happens, that’s just conspiracy theory, right?

I am not here to tell you what to think or who to believe. I simply wish to invite you to think about all the possibilities.

How is the science, pseudoscience debate relevant to you?

The short(ish!) answer to that question is this…

If you do begin researching alternative treatments for CFS (or any other chronic illness), you are going to come across a lot of conflicting viewpoints. (I have spoken more about that in another blog post. Follow this link to read it).

You are going to find people claiming their treatment is scientifically backed. You are also going to find people claiming some treatments are just “pseudoscience”. And you are often going to find the term “pseudoscience” used interchangeably with “quackery”.

The question that is less often asked, is whether or not the “science” behind a treatment was actually rigourous.

Does the experiment really provide new knowledge?

Let’s go back to my headache experiment. On the face of it, I tried to set up a “gold-standard” trial. But did I really? What happened to my “subjects” when they were given their pill? Were they all kept in the lab so as to minimise the possibility of other factors influencing the results? How did I measure the headache? Was that through some kind of scientific instrument, or did I just ask them to rate their level of pain? If I asked them to rate their level of pain, did I use an industry-recognised scale for that?

Think about it: whenever you are testing anything, there are so many variables to take into account. So, how do you know you have covered them all? And, does it actually matter if you missed a few?

It would be easy for someone else to come along and criticise my set up. Maybe I genuinely did overlook critical things. Or maybe I just didn’t consider them as important as some other people would.

And in some cases, the debate over the robustness of an experiment ends up coming down to opinion. One scientist believes these parameters would be better. Another scientist disagrees. So, are we then contesting the results, or the set-up of the experiment? Would a different set-up have led to different results?

What I am trying to suggest is this. We are guided to the belief that certain types of testing are always rigourous and trustworthy whilst others aren’t. But is this really true?

Does something need to be backed by science in order to be trusted?

Now, let’s return to the question I raised at the end of the pseudoscience section. If something fits Karl Popper’s criteria of pseudoscience, does that mean it shouldn’t be trusted?

Again, I find myself returning to a bigger question. Is it realistic or helpful to desire that only science is capable of proving the truth. Part of Karl Popper’s thesis is that science is only ever “theory”. It is constantly evolving. So, we may provide rigourous proof of one theory. But as our knowledge and experience grows, we are likely to find a way to falsify that theory. At which point, it needs to be replaced by the evolving theory.

We live in a world of evolving truth. We are never likely to reach a point where we can categorically know the truth about everything.

So, even if something is not currently “proven”, unless it has been “unproven”, it is simply an “unknown”. In that case, I would argue, the science, pseudoscience debate is secondary, maybe even irrelevant.

The “unknown” could exist at the level of an idea that hasn’t been tested. Or it could be an idea that has been tested and proven by one person. Or, then, tested and proven by multiple people.

As long as the treatment you are thinking about trying hasn’t been proven to be dangerous, then why not try it? (That’s a rhetorical question, by the way, not necessarily a suggestion!)

You may have other reasons for avoiding it, like lack of finances, lack of desire, or lack of time. But those have nothing to do with the scientific validity of the treatment.

What I would encourage you to do

Really, this whole long post has been about suggesting you develop your awareness. What is really going on in any given situation? How much of the advice you are listening to is really relevant or helpful for you? What feels right to you?

I’m not suggesting you ignore science or wisdom or common sense. Just don’t get lost in another maze of worry. Do some (sensible) research, then combine that with your own inner wisdom.

Think of it this way: you are not being called upon to declare what is science and what is not. Your only concern (presumably) is to alleviate your suffering. So, if standing on your head reciting your favourite poem backwards achieves that goal, go for it!

If you feel you then need to demonstrate its scientific validity, that is another thing entirely. More than that, if you feel you wish to share your discovery with others, just be honest about it. Just say, “this thing helped me. It has never been scientifically tested. I have no clue how or why it might work, but it worked for me, so here’s what I did. Give it a try if you wish.”

Yes, we need a system to help us discover truth, but we also need to acknowledge that we don’t yet know everything. Sometimes things just work, and we don’t know why.

Let me end the science, pseudoscience debate on an even more provocative note…

If the current system cannot explain something, is that really because that thing is “false”? Or is it because the system itself has limitations that need to be re-evaluated?

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[1] In 1988, the Center for Disease Control (CDC) used the term in a published paper, Chronic Fatigue Syndrome: a working case definition. Reported cases of disease outbreaks with symptoms like this go back centuries (notably, articles in The Lancet and The British Medical Journal suggest Charles Darwin and Florence Nightingale could have suffered from this syndrome). An outbreak of sickness at Los Angeles County Hospital in 1934, another outbreak at the Royal Free Hospital in London in 1955 are also often cited. And the International Classification of Diseases (ICD) included the term Myalgic Encephalymyelitis (ME – often used interchangeably with CFS) first in 1969.

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