This story from the Globe and Mail describes what happened to ten Canadians who left the country to get liberation therapy for their multiple sclerosis (MS). The therapy consists of widening veins that drain blood from the brain. The therapy does not always work, but it usually does. The improvement is so fast and large — comparable to giving someone with scurvy Vitamin C — that the thing being changed must be the source of the problem.
Mainstream MS researchers missed this completely. The mainstream view is that MS is an auto-immune disease (e.g., according to Mayo Clinic staff). This view would never lead you to the liberation surgery. Doctors not only have the wrong idea, they are unwilling to defend it. A woman in the Globe and Mail story tried to get the anti-liberation argument from neurologists. She couldn’t:
Unfortunately the neurologists are all hysterical. You can’t talk to them.
Remember this the next time someone tells you that ulcers are not caused by stress but are actually caused by bacteria — as several contributors to this EDGE symposium claim.
The vast improvement in understanding of MS came about because someone with the necessary expertise (a professor of surgery) cared more than most MS researchers because his wife had MS. I think this is why my self-experimentation found such different solutions than mainstream science: because (a) I cared more than the professional researchers who studied the subject (e.g., sleep) and (b) I had the necessary expertise to do research. I discuss this here.
Thanks to Anne Weiss.
Wow, Seth, you and I interpret things really differently. I am completely convinced, like you, that most of the time doctors don’t know what they are talking about and that most pharmacological interventions are useless or worse – still, the results of these MS patients are not remotely in the same ballpark as results from Vitamin C in scurvy patients. Many symptoms of MS are both subjective and influenced by mental states, and their are natural improvements and deteriotiations in the patient’s MS without treatment. When I read about the improvements these patients describe they seem well within the normal bounds of MS, without any evidence for an effect of treatment beyond the psychological/placebo.
vic, to take just the first story:
Why do you think such improvement could be normal variation or a placebo effect? I don’t know of any studies of MS — or any studies of anything — that have found placebo effects like these.
Another important aspect is how the improvements go away if clots develop in the veins.
That’s a good point.
Seth, I think you grossly underestimate the power of the mind over the body. The boundary between needing a wheelchair and a cane is often very fuzzy, and certainly depends on one’s mental state. I’ve seen people walk out of wheelchairs on televangelist shows. I’ve often encountered medical case reports that seem similarly ‘remarkable,’ such as a woman confining herself to bed for over 30 years because of unremittant pain, whose pain suddenly went away completely after a placebo. There is work by Ramachandran showing that unbearable phantom limb pain can be made to go away using a mirror. When people are told that a device drives an electric current through their brain they develop a headache. Lots of studies have documented little connection between chronic pain (back, neck, shoulder, head, knee) and physical abnormalities (except in arthritis or extreme cases).
If you showed me a placebo controlled study and the liberation group did much better than the placebo group then I might believe something is happening. If you don’t have a placebo group, which I am aware you are not a fan of, then the evidence needs to be much stronger – show me that 7 out of 10 people go from needing a wheelchair to being almost fully functional for a period of a year or more and it *starts* approaching the level of evidence that shows that vitamin C cures scurvy.
You do know that MS often occurs in a relapsing/remitting form? Changes like this don’t have to be attributed to either interventions or placebo effects: they can be an inherent feature of the natural history of the disease. MS can’t be viewed as a typical degenerative disease, with a continuous decline in functioning for all patients. So no, a single case report like this in MS cannot be convincing evidence.
Michael, I am unaware of remissions in MS as large and long-lasting as the one described in my quote from the first case (“Before the procedure…”). Are you? If so is there a description you could point me to?
All diseases go up and down, just as all measurements do. It’s the size and duration of the up/down variation that’s interesting, not its existence.
Vic, I’d be very surprised if liberation therapy was the first treatment these patients had tried. A placebo explanation of these results doesn’t explain why the previous treatments these patients tried didn’t work. Nor does a placebo explanation explain why blockage in the opened vein is associated with the improvement disappearing. And I am unaware of any placebo that produces MS results as good as those described in the article. They’ve been tested and don’t work this well. For example, this study.
Finding a miraculous ‘cure,’ being disappointed, and then repeating the cycle is the norm for most chronic medical conditions. And this treatment is no ordinary placebo – these patients spent many thousands of dollars, left the country, and had invasive surgery on their neck veins *against* the advice of their doctors and neurologists. Talk about cognitive dissonance effects!
An article on Liberation Therapy that you might find interesting
https://www.significancemagazine.org/details/magazine/1036499/Multiple-sclerosis-a-cure-or-a-contradiction-.html
thanks, very interesting article.