OARSI - Is pseudoscience making a come-back?

OARSI 2018, the international osteoarthritis conference is over, so what did I really think? 

What I liked:

• Friendly and lovely people, 
• Commitment to ultimately delivering improved patient care.  
• Enthusiasm from so many people.

And what I didn’t like:

• Food (lack of lunches!)
• Sending hundreds of tweets from the official OARSI account without being able to give my own opinion (I'm way too professional :-).
• An apparently general acceptance of “placebo”, “contextual response” and “clinical opinion”.

“Placeboists” & “Contextual Response”

Once upon a time, there were pretty much no effective medicines.  Gangrenous limbs could be chopped off and the joints cauterised, but that was virtually it. But plenty of “medicines” were still sold, mercurials, cupping, various charms and snake oils. These were all beneficial due to their placebo effect. …and when I was a child I was taught the purveyors were called “quacks” and charlatans.  

Remember Moniz’s leucotomy (pre-frontal lobotomy treatment of mental illness) and his Nobel Prize?

The leucotome, device invented by Moniz

Then these foolish things all started to lose out as science an medicine started to take over. We got water sanitation, antibiotics, anaesthetics, aspirin, opioids; wonderful painkillers, aspirin, the understanding of infection and the role of sterility in surgery, vaccinations… then antihypertensives, insulin injections, chemotherapy, antihistamines for acid, others for hay-fever, adrenaline AND anti-histamines for real bad allergies.  AND countless more.  The term placebo was then coined and we all knew what it meant: “patients were tricked into saying they felt better when really they didn’t”.

But osteoarthritis? Well sadly, there aren’t really any great treatments.  There are painkillers and surgery; in fact, physiotherapy and exercise seem to be best if patients can manage it. Hopefully, soon there will be new and effective treatments.  …but now it is pretty poor.

A side-effect of the paucity of treatments….. placebo is making a remarkable comeback.

So question: Why might an osteoarthritis patient report that their symptoms have improved?

1. Well, it may be because they have.
2. It might be because they are reeeaaaally bad at judging their own pain.
3. It may be because they are embarrassed about how much trouble they are being and how much they have just cost/spent.
4. It may be that they so desperately want the treatment to work they kid themselves, even though their pain is unchanged.
5. It might be because they didn’t really have real osteoarthritis, but aches and pains to some other cause and these were now less bad; their chronic pain had “regressed to the mean”.
6. It may be because they have given up, and accept there is nothing that can be done and decide to move on.
7. It may be because the treatment was so unpleasant they say they feel better to avoid further treatment.
8. The degree of pain prior to treatment is so variable, either intensity or frequency (or both) that is is literally impossible for patients to report accurately and they throw a bone to the investigator and guess on the low side after they have received treatment from an obviously well-meaning and earnest person.

All these things are possible, but it would seem that some investigators ONLY consider (1) is viable.  Then, since placebo clearly leads a number of patients to report less pain, these investigators extrapolate that placebo has actually made their pain decrease.  …and, therefore, there are now investigators, “placeboists”, actively promoting the treatment of patients with placebo.  Sometimes they call it other things “contextual response” is another way of putting it; if you give a nice painful injection with a kind and persuasive caregiver in a very posh looking hospital they are more likely to tell you that their pain is less.

These other factors also all help to persuade patients to report less pain; the pain of treatment, injection, price, the novelty of treatment, the authority of the administrator of the “treatment”.  

So does it matter that investigators are promoting consideration of placebo as a viable treatment? Hell yes!  It brings snake oil, crystal charming etc all back into play.  Things that were marginalised in bygone days will return.  Now presumably, once a really genuine treatment for osteoarthritis, that really works is invented these placeboists will either change their spots or be themselves marginalised.

But currently, the law kind of makes it difficult for people to treat with anything that doesn’t beat placebo. At this OARSI, however, there was an increasing volume of calls for “contextual treatment”.  

So spelling out contextual once more.. it means all those factors that persuade a patient to report lower pain OTHER than a placebo (or something that does decrease pain). So, it has been discovered that patients are so suggestible that not only can you trick them to reporting lower pain with a big fancy pill (placebo), you can do it with the environment, consultations, appearance of care or just kind consideration.  

Clinical Opinion

Feeding into this, is my second bête noire (or third maybe?): “Clinical opinion”. There have been several calls at OARSI for decisions over licensing of treatments to include not just clinical trials… but also to include “clinical opinion”.  In other words, calls to unpick the very standard which has been developed (double-blind random control trials).  Why?? Well because this happens; someone treats loads of patients with X.  The experience of a clinician is that they seem to be better, but the clinical trial says they are actually no better than placebo.  So what is happening is that placeboists are starting to say that just the fact that a clinician feels that a patient got better should be enough (or more fairly, a part of the equation) to decide whether or not to adopt X as a standard treatment.  Now to a non-scientist or statistician, that kind of logic probably seems fine. But to me it is horrific.  It is EXACTLY the same logic that was used by Moniz and the snake oil salesmen of centuries past.  

….now all this is understandable; it must be so depressing to see patients for year after year of your entire career and never really be able to help them.  So any suggestion that they may be slightly better is clutched at like a drowning man/woman clutching at an undersized life buoy.  Whilst some people pillory Moniz and his “brutal” leucotome, others accept that this was a genuine and desperate attempt to treat a then intractable mental illness. Anyone looking for a big pharma conspiracy theory can take a long walk on a short pier because placeboists are really nice genuine people who sincerely want to help.

But, some would argue, placebo causes real biological changes in the brain so it must be working? Nonsense. EVERYTHING causes biological changes in the brain. Standing up, thinking, walking; the brain is a bag of swirling chemicals and there is nothing you can do or not do that won’t change chemicals. Thought and love are just chemical and electrical activity changing.  Increases in endorphins??  Causing stress or inflicting pain itself increases the endogenous release of endorphins, so that is a particularly bad argument to use.

And does any of this matter? Oh yes, it matters, because when you treat with placebo and context you are with-holding real treatments however poor they are.  And if you end up treating with, for example, steroids which clinical trials show to not work (long term - they may help a bit over the first few weeks), you will do actual damage. Steroids for example do all sorts of awful things to people including weakening bones just for starters.

So what can be done: Well I could stop going to OARSI …. but to be honest, I firmly believe that once really effective treatments arrive it will be game over for “contextual treatments” and placebo.  Science and medicine will be able to fight back and I long for that as should patients and other investigators!!