There were reports in the media announcing the results of the PACE trial, with ecstatic claims about treating a widespread and deadly disease. And then, there were more reports – this time confused, not ecstatic – reporting the outrage of patients with this disease at those claims of being able to treat them.
I can fully understand why people are confused. I mean, what it looks like, is they found a cure but we all want to stay sick. Let me assure you, things are not at all the way the media make them to appear.
The whole area of Myalgic Encephalomyelitis and Chronic Fatigue is a dank and dangerous politico-medical mire. I won’t go into the politics/medical side of it (if you’re interested, see HFME and the rest of that site), or the myriad of scientific reasons that the PACE trial was a fraudulent, unethical waste of money and effort (again, if interested, see Invest in ME: Magical Medicine, A Review on CBT/GET, A Reporting of Harms). Oh, and the fact that the PACE trial actually dis-proved the theories it was based on (Pace Results Undermine)
Instead, I want to paint a picture of what’s going on in a way that regular people might understand – by comparing it to an illness that most people actually know about: Diabetes. You do know about it right? Good. Now, diabetes is nasty when it’s not treated. It can cause people to go blind, need amputations, have organs fail, and even die. So, if you’ve got it, treating it is pretty important. In the same way that diabetes can be thought of as the body being unable to handle sugar properly, ME can be thought of as the body being unable to handle activity properly, in every and any form.
So, instead of ME, lets think diabetes – here’s what the PACE trial would be if it was dealing with diabetes instead:
There’s a group of doctors, mostly psychiatrists, who’ve noticed that diabetes is a pretty dangerous and nasty disease. So they’ve taken a look at diabetes patients to see if they can work out a treatment to help them (so far so good).
Now, one of the characteristics they notice about your average severe diabetes patient is this: they avoid sugary foods. They go so far as to specifically purchase food that would usually contain sugar, but has been manufactured in a way to leave as much as possible out. Their whole eating lifestyles revolve around keeping sugar out of their food.
“Gosh!” says one of the doctors “I think I understand the cause of their illness! These people are ill because they are major sugar avoiders.
“You’re right!” chips in another: “Sugar is an important part of the diet, in the right quantities. We should see if a steady increase of their sugar intake improves their symptoms”.
“Yes” adds a third, “but we need to deal with the root of the problem too. I suggest that we try cognitive behavioural treatments, to free them of their pathological sugar avoidance. If they can learn that sugar is safe, they’ll not need any further treatment at all.”
“We should also use this opportunity to see if dietary management actually helps the diabetes patients” returns #2 “after all, it’s what they’re all doing already. But since we know sugar-avoidance is a no-no, we’ll add sugar, instead of taking it away!”
So, they come up with a trial to test these out. Except, it turns out that diabetics aren’t allowed to eat sugar in large quantities, and there are some serious ethical problems with forcing them to.
“That’s alright” says doctor #1, “we can use patients who are diabetic-like. As long as they don’t actually have diabetes, we have no barriers to the trial.”
Thus they petition their friends in government for £5million to carry out the trial. Here’s the details of it:
They take a group of patients who are at risk of diabetes, but don’t actually have it.
1/4 of them receive care from a doctor, then go about life as usual
1/4 receive care from a doctor, then CBT to get rid of their sugar-avoidance
1/4 receive care from a doctor, then steadily replace the sugar-free foods in their diet with ones that contain sugar
1/4 receive care from a doctor, then are prescribed regular spoonfuls of sugar in steadily increasing amounts.
Originally, they were going to take lots of measures of insulin levels etc. throughout the trial, but they soon discovered that the results didn’t reflect their original idea, so they dropped that. Instead, they got patients to rate whether they thought sugar was good for them, and how they felt. They also did a single test of blood-sugar levels at the end of the trial.
The trial results were as follows:
The patients just receiving care from their doctors had high blood sugar levels, but below the level of diabetes. However, their attitudes towards sugar and their general sugar-avoidance did not improve at all! These were the control group, to compare other groups to.
The patients who received CBT had very high blood sugar levels, but they were below the level of diabetes. Hurrah! Their attitudes towards sugar were slightly improved; they were willing to, on their own initiative, increase the sugar in their diet. Conclusion: CBT is an effective method of treating diabetes.
The patients who increased the sugar-containing foods had very high blood sugar levels, but they were below the level of diabetes. Hurrah! Their attitudes towards sugar were not very good, they were willing to incorporate a little more sugar into their diets but not enough to have much effect on them. Conclusion: Dietary management is not an effective method of handling diabetes.
The patients who took increasingly large quantities of sugar had very high blood sugar levels, but they were below the level of diabetes! Hurrah! Their attitudes towards sugar were much better, they were comfortable incorporating a lot more sugar into their diets. Conclusion: Increasing amounts of sugar is an effective method of treating diabetes.
Looking at the costs for each treatment, it was clear that spoonfulls of sugar were the cheapest to finance, followed by a short course of CBT to counter sugar-avoidance behaviour.
Thus they released the trials conclusions to the press: We can cure diabetes through giving patients large amounts of sugar on a regular basis, and by giving them CBT to counter their sugar-avoidance behaviour! Both of these treatments are cost-effective and can be offered on the NHS!
I hope now, you can understand why we’re angry about PACE.