I think I have looked at this before. It is a long and rambling account of various suggested analogies and broad concepts but I cannot actually find a clear theory in it. I have tried to follow what van Konynenburg was saying on several occasions but it has always seemed to me that there are no plausible system dynamics to the theory. And the biochemical abnormalities that the theory is supposed to explain do not seem to be recognised as reproducible features of ME by the research community. I get the impression of an enthusiast with a brainstorm but not much more.
The fact that nobody on PR seems to be able to paraphrase what he said seems maybe relevant - maybe nobody quite understood how it hung together?
I have tried on multiple occasions to be still my heart when I read your comments. As a Yale University Epidemiologist and Medical Study/Public Health Advocate I disagree with you, and find you truly short change people who have CFS.
First off ,Rich was an engineer, PhD in applied physical sciences, worked in nuclear materials and technology for 30 years, and studied CFS for 15 years.
So how he explained things might be a "biochemical abnormality" to you but not to me. Just because people
on PR don't respond to paraphase Rich - you think we don't "understand" how it hung together??
I suppose this is a polite way of saying that we are not smart enough to understand his chemistry.
This reminds me of the Cancer Doctor at Duke University on 60 minutes last week who was interviewed on
how he came to use Polio vaccine to invade cancer tumors. His lab biologist worked for 25 years to put polio into rats without causing polio. He came up with taking one branch of the polio and replacing it with the cold virus so the polio would not replicate.
The Oncologist at Duke said that he thought that his lab guy was crazy, he literally would not believe it.
So did the many other oncologists who now use HIV, Measles, Cold virus to treat dying cancer patients.
Do you remember years ago when all women with breast cancer had to have a mascectomy?
They removed all the muscles, tendons, everything - it was terrible. Then one little cancer researcher
realized that it was not necessary. It wasn't how much you took off, but where the cancer was and what kind it was, and if it had spread. He was totally ostracized - Not one doctor would talk to him, no one would dare fund him - he was laughed at by all doctors.
Then in 1975 -1985 he was allowed to run a 10 years study comparing women with breast cancer - 2 different treatments. After this doctor been shut out of medicine for years by the doctors who had so much to loose, the 10 year study showed that the total mascectomy did NOT extend life compared to those who had the other
treatment - so that was the end of total mascectomy. I am happy because I was allowed to get a lumpectomy for my breast cancer. Lucky me.
See Mr. Edwards - some of us on here, at least me, are not spring chickens anymore.
I have been sick with this for over 2 decades. Like the dying cancer patients I don't have time for 20 year placebo studies.Taking tiny amounts of B12 or Folinic acid is not the same thing as putting HIV into the brain tumor. You seem to get more bothered by the not so big conclusions of Dr. Amy Yasko and Rich than by
all those horrible oncologists putting HIV into little children's body - and still no double blind!!!
I worked at the National Institutes of Health for years. Many times, we stopped doing the double blind because it was not compassionate to let the people die for no reason.
When you have nothing else to loose, have absolutely no quality of life, can't shop, eat food, leave the house, do bills, do a job, visit parents, or drive it is unfair to hear one guy spouting off at how Rich is not "followable", not "reproducible" "no one can paraphrase him on PR" So what - he is just talking about what all the other guys talked about - B12 and Folinic acid. This is not Rocket science here. Just some supplements. It is just a chance for perhaps one person to feel better.
And he never ever said there was a similarity to autism, if you actually watch his 3 hour video in Sweden. He is quite up front, and quite logical on the biochemical makeup of why he came up with what he did.
I sent his studies to 3 researchers at Yale, Harvard, and Columbia Presbyterian. All three of them knew most of this already, and said it was fine for me to do. Actually they enjoyed Rich's thinking.
After years of trying to get glutathione into our bodies - Rich read Dr. Amy Yasko's study on autism. Coincidentally she had the very same problem. He used her solution for his new protocol in fact.
And of course Dr. Nathan used all of Dr. Amy Yasko's supplements for the 6 month study.
Rich was never ever ""an enthusiast with a brainstorm but not much more" as you say. To disparage an incredible scientist who helped move CFS research into a more scientific realm is disrespectful.
To reduce Rich's life's work to someone who had a "brainstrorm" strikes me as somewhat arrogant.
I say this to do no harm but to allow the members of PR who are so very sick to continue following the brave researchers and scientists who get little reward to help us, who unlike the HIV patients do not have an advocacy group nor funding. I say let us go forward with positive thoughts and much less negativity.