I don't especially care about whether Cheney requires money to read what he has written.
But this part really troubles me.
He's suggesting here not that studies should be done on drugs to address this illness because we need to find out whether they work, but because patients are trying them as a result of anecdotes on Internet blogs.
He furthermore suggests that the people who are writing the blogs are perhaps just experiencing "spontaneous improvements" and thus misleading others.
His final point is that we don't know the long-run implications of these drugs.
I object to this on a variety of points.
The reason we need trials of these drugs is not so that some people won't try them, but so that we can learn whether they work and get insurance coverage and broader prescriptions of them if they do work.
People are really really SICK. He knows that. He has been seeing them for 26 years, since Erik Johnson walked into his office in 1984. During that time, despite his hard work, almost none of the patients he has treated has made much progress. If they recover enough to go back to work - with difficulty in any sort of job - even for a short period of time, he calls that a "functional cure" and trots it out to people as a big success story.
His not having gotten folks better is not a failing on his part. These are tough patients. It's a tough disease. Much tougher than most, for sure.
If Jamie Deckoff-Jones and her daughter say that they were really sick for years with this disease and give specifics, and they furthermore say that they are much better, and they furthermore demonstrate through deeds that they are well (taking college classes, driving comfortably across country to attend a conference), who is he to say that it's "anecdotal"? He uses anecdotal stories all the time to demonstrate the success of his own methods.
His suggesting that patients are being misled by these stories is an insult to patients' intelligence. Individuals suffering from this disease are not stupid. They - we, when I was actively sick - certainly have lost a lot of their cognitive skills, in terms of ability to process information and focus on spatial tasks and other specific issues. But I've yet to meet anyone, in person or online, that demonstrated that they were not able to make reasoned judgments and decisions that weighed the pros and cons of different sorts of action. People with this disease may be impaired, but they're not senile or mentally retarded or uneducated or gullible. We don't need to be protected from knowing about whether various courses of action have worked. We need all the knowledge that we can get.
The idea of "anecdotal" has been keeping people from knowing about who's recovered from this disease for 24 years now. When Cheney and Peterson got one patient during the Incline Village epidemic to improve a little due to something that they tried, they told everybody about it and tried the treatment on a bunch more people. When Erik told them that he was doing a whole lot better as a result of staying away from the mold in his house, they patted him on the head (figuratively) and showed him the door (literally).
Clearly this had nothing to do with the fact that Erik was a hang gliding instructor rather than a medical professional, because the response is the same when a medical doctor says that she also has improved from a treatment that he didn't suggest.
CFS patients do not need to be shielded from information. They need to learn what works for other people, so that they can evaluate their options and make the decisions that they believe are appropriate based on ALL the information - anecdotal or not - that is currently available.
On the other hand, if he believes that these drugs may have negative long-term consequences for people, then he should be bringing that up. In fact, if he thinks that, it's something that I think he has the moral responsibility to bring up.....not just in a newsletter that patients are not allowed to share with other people, not on a fee website, but in a way so that people can access the information freely.
If he wants to hide information about the magic buffalo creams, then fine. But if he really thinks this stuff is so dangerous, then he should tell everybody - not just some people - clearly why.
All in all, I suggest that somebody buy a subscription to the information on the web site and then repost it someplace where people can read it. Is he really going to take CFS patients to court for sharing the information that he puts on his website? Is that really the kind of image he wants to get across in a community this small?
No way in hell. No way in hell. As a former PR and marketing consultant.....no way in hell.
People are sick from this disease. They really are SICK. And you know what? It's possible to get better. And life is pretty damned good when you get better too.
Keeping people from getting better because the information is "anecdotal" is unconscionable.
Best, Lisa