I have not had an editorial position for this blog, until now. No consistent direction or unifying theme for what to say except in general terms to speak about helminthic therapy and anything that might, however distantly, relate to the health of those who approach us for hookworm, or for whipworm.
Often I have been embarrassingly guilty of writing self-indulgent garbage I should have known was of interest only to me. Things that in retrospect should not have been of interest to me. I apologise, it won’t happen again.
I have decided that I am going to concentrate on science for a while, what it is, how it is practiced, how it is funded, who decides what gets funded, what is published and how, and perhaps how elements of that might be improved. Science has not always been like this, or even been at all.
So at some point soon I will write something to try and put science in context. Because if one does not understand what science is, where it came from, how it is practiced and has been practiced, how scientific knowledge has been disseminated, then one cannot make informed decisions about where it can and will go. Or even be able to participate in that debate. It is important, to me, to widen that discussion, for science and it’s practitioners as much as us, those who fund and consume or are affected by it’s output. As I have spent more time reading science and trying to understand how it is practiced, funded and published, I have grown more and more to see opportunities for improving science.
But to start I plan on writing a guide to reading science for the layperson. Where to find it, how to understand it, why it is in the form you find it, etc.
When I started trying to learn about helminths’ potential therapeutic use the idea of using them in that way was not called helminthic therapy, it did not have a name at all. Except in one paper I read somewhere along the way, and hope to find again soon as I reread a lot of papers to write about here.
Now “helminthic therapy” is used almost everywhere, it has spread as the name of choice for what I do for a living amongst the informed. Everywhere except to the people who do not know that “helminth therapy” is the process of killing off unwanted infections of helminths using drugs like mebendazole. Or among those who prefer the less formal, and less accurate, worm therapy.
I wrote the first copy of the article titled Helminthic Therapy on Wikipedia, so distant now from what I wrote I can not claim authorship. I started the first successful discussion group concerned with Helminthic Therapy on a public forum. I wrote the first blog post back in April, 2006, started one of the first companies, and was the first to be told that helminths are drugs by a regulatory agency and that I should stop selling them.
Doing those things demanded a good understanding of the science behind what I was doing and what I wanted to do. Any posts online back then on the subject were met largely by an outpouring of uninformed rage. Fear, driven by a belief I was going to reintroduce a plague, kill millions (I am not making this up or exaggerating) and worse, informed that rage. To the extent an answer existed to posts and comments that angry it was to reply with information and opinion I could back up with citations. If I could not credibly claim the expertise and knowledge I could at least point to those who could.
Because back then I could not point to magazine articles, nor to any other reservoir of the interpretation of science by others. When I started none of those things existed, there were no articles I could find online in any publication that examined the subject, except what there was in scientific journals or publications.
So I had to read scientific papers, there was no avoiding it. There was no choice if I stood a chance of really understanding the subject, or of explaining it to others, just as there had been none when I was deciding whether or not it was worth investing the time money and risk in obtaining helminths, and in trying to find a source other than from the third world. It is hard now to remember how afraid I was.
All the time I read scientific papers, and as those devoted to helminths ran out I switched to reading about genetics and immunology, about anthropology and human history.
I came to enjoy it, it has been a source of great pleasure, and some edification I hope.
But when I started I was frightened, really frightened primarily by my responsibility to the sick who approached me for help. I wondered if I should, that I might not be capable of understanding it, that it might not work, that it might harm. That I might be being presumptuous, arrogant, that I might be guilty of hubris. That I might be wrong. Of course that is a stupid set of worries or ideas, and in retrospect I think very damaging. For me, for anyone afflicted by the attitude, but also for science and our society.
But I also think it is commonplace, as all the criticism expressed directly to me when I started reading science or suggesting I would to friends or family illustrated. People wondered how it could be possible I could understand it without having studied at university. The accusations of arrogance and hubris were especially bruising and frequent. What made me think I could, or had the right, to read science unfiltered?
I think this has come about because, or at least in part, of the more general and damaging tendency to deify scientists and science as more than human, as requiring super intelligence. That science was the domain of a priesthood of arcane knowledge with entry only for the initiated. As well as the tendency to rely increasingly on specialists, as we have all become more specialised in our work. Real Estate agents, furniture shops, green grocers, shoe stores, tailors and clothing stores, no one is the kind of self reliant generalist we all were just a century ago in the developed world. We used to grow our own food, now the idea is widely seen as absurd.
So I want to make science accessible to you, to explain how I went about developing what I believe is a well developed ability to read and understand a large proportion of scientific research, and, perhaps how you can too. Where to go when you need help, and how to develop your abilities over time.
Such as where to find papers, often for free. What to read amongst those available, how to choose among the millions of papers out there. How to find older, harder to find papers that may not be online yet. What tools you can use at the beginning to make the specialised vocabulary understandable. How to examine a paper critically to understand if it is affected by bias, in questions, methods or conclusions, etc. How to find related papers, to the one you just finished to round out your understanding of the area in question.
I will go through some of the papers I read along the way over the past ten years, starting in 2004 when I first encountered the hygiene hypothesis, with a link to the full text I am discussing, of the paper I want to examine and it’s findings and weaknesses.
I do not claim to be an expert and welcome any constructive criticism, I want to be better too. Hopefully this will stimulate the interest and belief you need to explore science yourself, and to become a better, more critical consumer of it. Science clearly needs our participation in some way if we expect it to better serve us. To me it seems as though much of it has been hijacked by a minority with the money, means and interest in directing science. Much like politics at the national level in the US and UK.
I would like mine and other more disparate voices to be included in the debates science and in particular regarding about what gets studied, when, by whom and how.
Hopefully if anyone is interested we can use this site and the comments sections to discuss some of the papers and issues, and I encourage people to send me any science they would like to discuss with me privately or here.
2 thoughts on “New direction for this blog”
Jasper, I just tracked you down again after a few years. I had a friend who suggested this form of therapy to me several years ago and then i couldn’t figure out how to get int touch. time then went on and life took its own course. then this morning i listened to the radiolab podcast and there you were. so i went to your website and just emailed the questionaire. are you still selling helminths? i am very interested,
Hi Kristin, I was just speaking to Ross but had not seen this to ask him if he had seen your questionnaire. I will check now and email you to let you know, I wish you had not waited so long, you might be better by now. Jasper