Hi, we have long had a well maintained and regularly updated FB page, fed in part via our Twitter account. It gets a lot of activity, daily, with links to news, etc.,
To visit go here, and if you just want the twitter feed the address is @wormtherapy (@helminthictherapy was too long, as much as I dislike the term worm therapy it was that or nothing.).
I hope you find these resources useful.
This is, as the title suggests, one in a series of posts, almost entirely derived from emails from her family that they send me periodically to keep us up-to-date.
At the end of this post, and in a few minutes all the others, is a standard block of text with links to each part of the story of this child, as well as some additional information.
———–
From the child’s father:
“It has been over two years now since we began treating Crohn’s disease in our daughter, “A”, using helminthic therapy.
Specifically human whipworm, from Autoimmune Therapies, and she is today doing better then ever. She was around 21 months old when we started helminthic therapy, she had been diagnosed at 14 months of age, and had not responded to any attempted treatment of the disease, except steroids.
She is now over three and a half, and is as happy, healthy, and as beautiful as any parent could want from a child.
Two years ago my wife and I could have only hoped the future should be so bright for her, and us.
A has now taken four doses of the helminths, and each time her condition has only improved.
I can assure you it was not a straight line to good health, but rather a gradual improvement. Like any good, long term investment, there were setbacks along the way. Despite our better judgment, every time there was blood or diarrhea, in the back of our minds, we would wonder if it was the beginning of a major flare, one that would require the drugs we tried so hard to avoid for her.
But the reality was that it never even came close to that. There is no doubt she is doing better now then a year ago, and certainly two years ago. She continues to gain weight, in fact she is 34 pounds, and her stools continue to improve. We have even begun introducing different foods to her diet, with fantastic results.She can play endlessly with her sisters, is as cheerful as could be, and she is even a little chubby, something we’ll take any day of the week over the alternative.
She has not taken any medication for the Crohn’s disease since shortly after she began helminthic therapy.
Suffice to say, treating our little girl with helminthic therapy was the single best decision we could have made, given the circumstance. The treatment has enabled her to live a normal life with Crohn’s disease, rather then one riddled with pain and fatigue, pills, injections, and steroids.
It is not lost on our family, the thought that today we can focus on teaching “A” to read, and swim, and good manners, rarely worrying or even thinking about the fact that she has Crohn’s disease, instead of living in the bleak future we imagined for her, and us, two and a half short years ago.
I’m proud of what we did for her, and we’re thankful to Autoimmune Therapies for the opportunity to do it.”
End of email.
As it happens I am proud too, particularly of those who work with me to do this. I talk a lot, too much perhaps in the past, of the sacrifices my family has made. Far too little has been said about the team working with me.
All, in different ways, are making very considerable sacrifices to be able to make sure people like “A” continue to get the probiotics they need. Our chief scientist, who had a very good career before I came along, has essentially sacrificed that to peruse this. That is just one easy example to identify and explain.
One day soon I hope that it will be possible to acknowledge their courage, the risks and sacrifices they have made, and to do so completely publicly. I am the figurehead for a group of people who are all intelligent, hard-working, dedicated, principled and very high-integrity individuals.
All intelligent enough to not want their name to appear on my blog.
Here’s to hoping that will one day change and their accomplishments and courage can be lauded publicly.
“A” was under 2 years old when diagnosed with Crohn’s Colitis, and the disease appears from the family’s descriptions to have been severe and aggressive. They approached us when the recommendation for treatment from the child’s Gastroenterologist was one of the biologics, either Remicade or Humira, I cannot remember which.
Below are links to each of the four posts, so far, which for the most part are just emails from the child’s dad on “A’s” progress, and his thoughts and observations.
Managing the links between the posts has become cumbersome, so I have created this standard block of links to tie the story together, explain the context if someone happens upon one of the posts and does not realise they are part of a series, and will probably make a static page to aggregate the whole thing.
Part 1: Part 1 of the story of “A”
Part 2: Part 2 of the story of “A”
Part 3: Part 3 of the story of “A”
Part 4: Part 4 of the story of “A”
When I still lived in the US and Sani Abacha was the suddenly the dead ex-president of Nigeria, and it was therefore discovered he had looted billions from the Nigerian treasury, some of my friends in the US were aghast at the scale of his corruption. Apparently they did not read much international news, or much news at all perhaps.
My comment was “At least their leaders get a decent price”, being of the view that to sell your constituent’s interests out to lobbyists in exchange for providing you the means to retain your position, as what, at the next election so you can repeat the process lacks ambition, any understanding of pricing, as well as integrity. That seems to me to be an accurate description of the relationship between lobbyists and the politicians they fund in America.
As I say, at least Mr. Abacha got a decent price for his integrity.
Which perhaps partially explains this map. One of world corruption based on the research and perspectives of those who prepared it. As the title asks, what is corruption?, so must have the map makers. How corruption is defined and measured, which varies with time and place of course, and who does the measuring. These fundamental things have an enormous impact on the results in such an exercise.
I think they missed most of the endemic corruption woven into western economies, of the type above and below. Corruption, after a great deal of practice in the developed world, has been refined to either a state of invisibility through familiarity. Or one of a pantomime everyone uses to pretend to themselves that this is just the way things are, or for a minority, to ensure they remain so.
But in any case it is legal when practiced on any scale worth studying, or mapping, in the light yellow or orange countries on that map. But if it is legal then it does not appear on this map. A kind of Catch-22, or of corruption all of itself really.
When thinking of really big examples the Bush sponsored Medicare Prescription Drug Improvement Act still comes to my mind first.
An Act that on the one hand makes prescription drugs cheaper and more available to seniors enrolled in Medicare. Old lady’s arthritis pills, what is not to like there? Within a contorted system of plans and rules it should be noted.
An Act that also expressly forbids the United States Government, the largest buyer of prescription drugs in the US, from negotiating lower drug prices from drug companies. Take a moment, let that sink in. Within a very simple system it should be noted.
This seems, to me, like it might be an example of corruption.
But not according to this map.
http://media.transparency.org/maps/cpi2013-640.html
Senator Hillary Rodham Clinton (Democrat, New York) announced that she is working on legislation to improve the Medicare drug benefit by creating a regulatory structure to find and remove less-efficient private drug plans. She also said that the government should have the authority to negotiate for lower drug prices in Medicare (which is strongly opposed by the pharmaceutical companies) and that pharmacists should be reimbursed for filling prescriptions for Medicare beneficiaries who were unable to prove eligibility because of computer glitches; and the February 15 deadline for reimbursing states offering Medicaid coverage to address coverage gaps should be extended - Link to source
When the custom was to speak plainly I think this was referred to as price rigging. But as with IQ tests, or SAT scores, or law enforcement, test results tend to provide as comfortable outcome as possible for those designing or administering the rules or laws, and more so as time passes. Intelligence declining according to historic measures? Grades and scholastic aptitude measures in decline? Too many of your friends prevented from expressing their desires by unreasonable limits imposed by a different interest group?
Don’t cheat, don’t break the rules or laws, that is corrupt. Change them, that is democracy.
In the more specific example below, as shown in the accompanying screenshot from my unsubscribe form submission with WebMD Professional, you can see mention of this type of legal corruption that few seem to see because it is part of the fabric of life. In this case it was a piece of that fabric I had not seen before, so it was shocking.
After unsubscribing I was asked the reasons for my leaving, and other questions WebMD thought might provide useful answers.
The most interesting to me was: “Do you only participate in programs sponsored by pharmaceutical companies when an honorarium is offered”.
I did not know that it was common, and legal, practice to pay doctors to listen to drug companies make presentations, did you?
I suspect that this information is presented either alongside, or perhaps even as, research or continuing education requirement courses offering credit to doctors who have to submit evidence they are keeping abreast of academic advances in their field. After all what else but interest or compulsion would make you travel across the country and stay in a hotel with a bunch of doctors, and attend a conference and it’s presentations and discussions?
Honorarium, far more mellifluous a word than any accurate alternative. Some examples? Substitute “bribe” or “inducement” in place of “honorarium” and the question would be as accurate, and more honest.
Paying someone to attend, no mention is made as to whether honorariums on average defray, meet or exceed the expense of attending for instance. Or that they are only offered if the party paying expects to profit from the act in some way. That might be by gaining a reputation as a sponsor of worthy causes I suppose. But these are drug companies paying doctors after all, and drug companies are first for-profit, not for-health, enterprises. What do you think the odds are that this practice is so widespread that it is regulated?
How large are honorariums, how do they vary, is there any correlation between the size of the payment and the market potential of the drug in dollar terms, how large are they compared to the expense of attending in specific drug categories, and on average, etc., etc.
That would be an interesting little project.
I want to emphasise that I believe what we are doing exists in a much broader, well-established context.
The diseases we are trying to work with are all environmental in origin. The hygiene hypothesis essentially says that because we have impoverished the environments defined by our bodies by reducing the variety of organisms that populate us, we are getting sick.
Helminthic therapy is an attempt to restore health by remediating the ecosystem formed by the subject’s body. As in the reintroduction of wolves to control deer populations.
I believe that the most important, eventual, outcome of what we are doing will be to get mankind to see that our health is intricately intwined with our environment. That hundreds of millions of people are already sick right now because of anthropogenic environmental change.
That the environment, our ecosystem, is not something up in the sky or separate from us. That it is part of us, and intricately connected with us, our health, our daily lives, that we are component parts of one integrated, dynamic system.
That the ecosystems defined by our bodies and immediate environment, and our daily habits, have been so damaged that hundreds of millions of people are living lives limited by pain, fear and suffering.
If we succeed in that then a profound change in human behaviour towards our planet will occur. Because everyone will be conscious of their direct stake, theirs or their children’s health, in the health of the planet as an immediate phenomena. Not as some distant possibility that we might be able to put off by using the recycling bins.
That there are not ecosystems, except as artificial concepts. There is an ecosystem, and everyone”s health depends on it in profound and immediate ways, because we are all part of it.
We are the ecosystem. I am the ecosystem. You are the ecosystem.
Further, right now, our species in the industrialised and industrialising world, is under enormous selection pressure. Those with MS or Crohn’s, just two instances, will be much less likely to choose to procreate.
Ironically it is likely that many of the diseases we can address with helminthic therapy arise out of genetic adaptation to parasite/microbe rich environments. So in a sense the best adapted specimens, the very latest genetic models of humans, are those experiencing the worst consequences of environmental change.
We are witnessing not just the extinction of various species, but also a strong and rapid change in mankind’s genetic makeup.
I recognise that we should not attempt to “boil the ocean” as a friend used to put it, but I think if we frame this correctly we will find more allies than at first it might appear, and be able to present the concept of what we want to achieve in a more recognisable, and palatable, framework. We can just fit in, perhaps, rather than trying to present something entirely alien. If we are another environmental cause our pool of allies increase, and our messages are easier to understand, fit within a contextual and conceptual framework that is familiar.
That really is it for a while, enjoy your summers. Get outside, get dirt under your fingernails, get some sunshine, and get some river water down your nose.
