By Keir Liddle
Something has been troubling me over the last few days as the Burzynski clinic saga has been unfolding the slowly increasing involvement of Burzynski supporters and followers in the online twitter debate. Such instances have thus far been sporadic but I would like to urge all those involved in twitter exchanges on Burzynski to keep in mind that patients and prospective patients of the Burzynski clinic are already in dire and desperate situations battling with cancer. It should not need saying, and thankfully the vast majority of skeptics, medics and tweeters have engaged sensibly and sensitively, but these people are not the enemy.
They are desperate for a cure, for a treatment, desperate to live and they do not need to be engaged in debate or argument on the internet pointing out to them directly that the treatment is nonsense or that their arguments are founded on logical fallacies. These people are seriously ill, they deserve our sympathy and support.
I would like to stress that the vast majority of direct engagement has thus far been civil, sensitive and sensible. Let’s keep it that way.
But the whole twitter storm has raised some interesting questions for me. Are we doing enough to protect and support those who have been taken in by promises of miracle cures? Is it enough to simply offer the evidence and the dissenting view and hope people make a choice based on the best available evidence and knowledge?
What about those who only discover after the fact that the miracle cure they have signed up for does not in fact work or worse still may be an out and out con?
I would like to think that by blogging and raising awareness that was doing enough or doing everything that we can possibly do but more and more my gut is telling me this is simply not the case. We reveal the lack of evidence in support of these miracle cures and alternative treatments and we will even publicise far and wide the tragic human cost of many of them. But is it enough as skeptics to just carry on as we are and simply do this?
Increasingly I doubt it is.
Which is why I am on the search for support groups, charities and other organisations that exist to help support those who have been taken in by snake oil salesmen. Or have lost relatives, friends or life savings to the false hope promised by quacks, charlatans and pseudo scientists promising salvation. If anyone knows of any please comment below and we at the Twenty-First Floor will work towards creating some form of online resource for the victims of quackery.
If such a thing does not exist I am willing, though I will almost certainly need the support and assistance of others, to explore the possibility of setting up a charity to show these individuals that skeptics have not forgotten them. That their plight isn’t just about blogviews or quackbusting but rather that skepticism has a (for want of a better turn of phrase) a “human side”. The major obstacle to this endeavour is that I would be starting from scratch with zero knowledge so I would appreciate if anyone is able to advise on this in any way, shape or form.
My proposal would be to explore whether a charity that offers access to counselling for those duped by alternative medicine treatments or affected by bereavement following the use, in desperation, of alternative and unproven treatments. A charity that could perhaps also offer legal advice to those whose life savings have been sunk into unproven and perhaps dangerous treatments.
On a small scale this could perhaps be achieved by seeking trained and qualified volunteers from the skeptical community itself. Setting up a time bank or similar where those with counselling or legal experience could offer some initial advice to those negatively affected by quack treatments, psychic cons or other such things. If this might be something that would be of interest to you please comment below (as I feel it is the most achievable thing we might be able to do).
We could perhaps also use some of our quackbusting time to contact local medical charities and organisations to see what support they offer. For instance in the UK people could contact their Citizens Advice Bureau and we could collate such information into an online guide or website for those affected.
There are big versions of this idea and smaller more manageable ones and there may be others out there with better ideas of what is achievable and what we could realistically do. Please do comment or otherwise get in touch as I think we could make at least some small difference as skeptics by helping these people.
I am a skeptic because I care about the damage that quackery can cause. I reckon it’s probably about time I tried to do something about that. Whether or not I can remains to be seen, but I’m not sure I can’t at least try anymore.
If you know of any such groups that already exist or might be willing to help in some way, no matter how small, please do comment below.