This topic comes as a touchy/sensitive one for me. My wife and I have a close friend who suffers from MS so it is disheartening to accept that a cure doesn't exist. The condition also brings with it a myriad of "miracle cures" and scamsters who prey (though, at times, unwittingly) on helpless and, seemingly, hopeless people.
Our friend would love to be cured - it is, like many other illnesses, horrible. It steals the life from countless vibrant, loving and caring people and none of us want to see people suffer.
In the past number of years I've researched a great number of things and I've had discussions with people on a number of "touchy" topics. Not long ago the local newspapers were filled references to a topic that I have since done substantial reading on and that relates to MS - liberation therapy. (Much of the claims of liberation therapy have been taken up by other research groups and scientists and the results give great reason to be skeptical of it - though countless people were initially skeptical just from the sketchy descriptions that Dr. Zamboni had offered.)
I mention this therapy not because I think it is bunk (though I have every reason to accept that it is) - it is the reaction that people had to those who were skeptical of the surgery prior to the more recent research. MDs (real medical doctors), scientists and others were concerned with the claims that Dr. Zamboni was making about the "cause" of MS and what he claims he was discovering and the resulting comments on the news stories and blogs included (paraphrased.. some people took paragraphs to make their points):
"If you had MS, you would want the money to have this lifesaving surgery."
"You're just a shill for big pharma. Big pharma has never cured anything."
"Follow the money. You make your money by treating people not curing them."
"Leave well enough alone. You're destroying hope for thousands of MS sufferers."
When it comes to sCAM treatments, these are pretty standard arguments people use when someone questions their value or efficacy. We've discussed many of these subjects before so I will only briefly discuss most of them.
"If you had this condition..." Yes, if I had MS, I would hope that our health care system would pay for a lifesaving surgery (liberation isn't a lifesaving surgery and it has little/no plausible method of curing MS - whatever causes MS it isn't reduced blood flow to the BBB). I would expect that the surgery a.) be plausible, b.) have potential for benefit greater than the risks and, c.) have scientific support. Nobody questioning liberation therapy was asking for the government to blindly dismiss costly treatments. Money is a limited resource - (at the very least, potential) efficacy should be a requirement for funding any treatment.
"Big Pharma Shill" is a tired and old argument. Steven Novella has discussed it at length. As for "Big Pharma" never curing anything - Polio? Mumps? Measles? Rubella? Pertussis? Malaria? Tuberculosis? Pneumonia? Gonorrhea? What about (from a surgery standpoint) appendicitis? Re-attachment of severed appendages? Or how about increasing the average lifespan from below 50 years to over 75 years in about a century?
"Follow The Money" is often a stronger argument against the treatment that people are trying to defend. In this case, "liberation" is a money maker for Dr. Zamboni and his companies - he gets paid to train people, he has an agreement with a manufacturer of a particular piece of equipment and he guards his "secrets" closely. His "science" is done via press release, he has created his own foundation and stands to make untold millions of dollars from his claims. (This argument also fails for people like Mike Adams and Joseph Mercola - they argue that Big Pharma isn't concerned about you and I, they're just in it for the $$ - so you should avoid Big Pharma and buy stuff from them. Odd. Arguing against an indirect (if even that) profit motive while having solely a profit motive is, well, ironic.)
This is the primary reason for this blog entry. Just as when I tackle the undue respect that religion gets, people who question quackery are confronted with the claim that we're simply taking away hope (and sometimes admittedly false hope).
I've struggled with this because I've often said "I'm not trying to take away people's hope" but I think I've been wrong all along in leaving it at that. The argument should be "no, you shouldn't be accepting the creation of false hope". Doing so opens the door for abuse - we need to speak out against this idea and we need to do it sooner than later.
Allowing people to create and perpetuate false hope is the problem - not "us" taking it away. If a treatment can't affect the outcomes of a particular illness, we need to be questioning it. The sooner that we dispel the myth, the fewer people that get taken by it (and the fewer people that needlessly die from it). We're doing people a disservice if we simply let them be abused. The price of false hope is too great - not only when it comes to money (wasted on sCAMs, being diverted from real research) but when it comes to science acceptance.
Our level of science literacy needs to change - higher levels of understanding of science will mean greater skepticism towards outlandish claims (extraordinary claims require extraordinary evidence) and that isn't going to happen by allowing claims to be made simply because we "shouldn't be taking away (false) hope".
I feel that the hope is misplaced - hope can be found in the ever evolving world of scientific discovery. (And that isn't best achieved by undermining the scientific method.)