Cheney's Latest Newsletter

slayadragon;127815 said:
shannah;127484 said:
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

Comments

This is exactly what has bothered me about the Ampligen trials, and how it was never approved for use. I felt that it should be my right as a patient to decide if I wanted to try Ampligen. Some people did have success on it, or at least they did improve. And the drug was withheld from us all for over twenty years.

If some of us want to try new treatments, drugs, go into trials, whatever, that should be our right as patients to be allowed to do so. It should be our choice.
 
Everyone has their own opinion of Cheney. I have had a much better quality of life because of his putting Kutpressin in a CFIDS article in 1990.
And him using the Transfer Factors that were sold at Prohealth 'as used in the Cheney Clinic'. Did I get anywhere near well? No. But I'm not
bedbound, I have traveled, done things that I never would have done without Cheney. There are others who were able to work with kutapressin.
In fact, Kuta was the only reason I made it one of my son's weddings.

Possibly Cheney says not to try things is because after he got the Echo Terrain Map, he learned that some things he had been using were detrimental
instead of positive for patients.

He is giving his opinion. Take or leave it. Isn't that what we do all the time with new info? I've been sick for 24 years. Cheney's recommendations have
made the difference for me. TG
 
Cheney's heart is in the right place, although I think his skills as a medical practitioner are more proficiency than as a scientist.

Such reports are anecdotal and it is a big problem if it involves treatments which are expensive, or have substantial side effects, which many have.

If we want to learn from individual patient reports, then we need to standardize and improve the methods of health reporting of individual patients before, during and after treatments. All other 'small' details that people like to forget (this is a problem with larger studies too), like forgetting to take their medication occasionally or whatever. This kind of system might be integrated through a site like Patients like me, but their survey as it is, does not seem sufficient to me. But for that matter, I am not happy with the idea that the simplistic fatigue scales and metrics such as SF-36 that are common in CBT trials are indicative of much.

Unless such treatments are curing patients so that they can work full time and can play sport on the weekend, we need more rigorous methods of measuring benefit.
Activity levels (as measured by what you actually did) as well as precise descriptions of the level of fatigue, pain etc must be recorded every single day.
Although this stuff is not necessarily highly regarded, if you get more than a few case studies for a particular treatment, this stuff can potentially be published in certain specialized journals since the quality of data will be high.

As far as controls go, although this may offend some people, I would consider homeopathy, EFT, "Amygdala Retraining" and even things like low impact yoga sufficient as a basis for comparison, provided the comprehensiveness of the data set is the same.
 
Dr. Cheney through Dr. Sharp has done a great deal for me. Used to be in a wheel chair and now can work 50 hours a week and travel around the country for work purposes in a matter of a few months. I understand that it costs money to maintain a website such as his and I am thrilled to pay the $50 a month to help him help others. I do not think Cheney's heart is in the wrong place at all. He has indirectly helped me immensely and I am grateful.
 

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