Reasons for CDC deplorable conduct

[Stone]

Over the years I've spent a good deal of time trying to really nail down the REASON or REASONS for the CDC's blatantly inept handling of CFS from the beginning. There is much speculation. I would like to start a thread dedicated solely to what people think are possible motivations for the CDC's behavior. This latest website update they have done in the face of today's state of the science of CFS is deplorable, but what would motivate them to do such a STUPID thing? They are scientists (theoretically) after all, and they do have to answer to higher-ups, and their reputations and therefore careers are on the line. It sees as if they bend over backwards to ignore real science and this just does not seem logical. Can anyone be that stupid and still breathe? So what do you think is behind it all? Protecting insurance companies profits, as Teitlebaum suggests? What? Many people have theories and it seems good to place them in a thread and see if anything in particular surfaces.

 

[usedtobeperkytina]

ego, sexism, lack of biological abnormalities early in investigation, inability to admit a mistake, etc.

Tina

 

[Karin]

I just copied what I posted yesterday on another thread. I think it belongs here more anyways. I hope I did not break rules by copying one of my previous posts?

'I am wondering if the problem is not simply lack of money allocated for this project at the CDC. When you read 'And The Band Played On', this is the main problem at the CDC: asking researchers to deliver but not giving them any money for doing so. The book describes how researchers could not even find funds to replace the door knobs with hooks to avoid contamination with dirty gloves, when they were going from the newly set up AIDS lab to the microscope room, and they had to wait for several months for it to be approved, and that was just a couple bucks.

I have no idea if this is the problem too for the XMRV paper, but if it is, I can imagine that they would have to use cheap PCR technique, wouldn't have money to buy different equipment than what they were already using, and so on. And since it would be too embarassing to admit the truth (again, same thing from 'And The Band Played On' book), and maybe some might risk losing their job if they don't deliver, they just made do with what they had and when they could not get positives from the WPI samples they just did not mention it?

And of course, any smart and competent researcher does not stay in such an environment but move somewhere else, leaving at CDC only those with less potential.

Again, not trying to find excuses and I don't know much, just wanted to offer another possible theory.'

 

[Robyn]

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[V99]

It was easy, and allowed time for skiing.

 

[Stone]

How does the CDC make money by deliberately bungling this?

 

[V99]

Government gives them money for CFS, they take it and use some of it elsewhere. It also means jobs.

 

[boomer]

I think that they put some bad eggs in positions of authority. These people may have perceived that their role was to challenge and keep the need for resources down. They had no empathy for people and they manipulated in order to prevent funding. (I don't know these people personally but I imagine this is how something like this could go on for so many years.) So little funding was provided that they were able to keep the lid on any thought that a retrovirus was involved. How it happened that Canada, my home country, didn't do research sometimes confuses me too. I suspect there must have been some influence from somewhere but I don't know the facts. If the CDC didn't want to open that discussion, then is it possible they discouraged research in other countries? I wish I knew the story.
The CDC and all Governments for that matter, have to expect rage after we have been trying daily to figure out this illness with no research funding for decades. My daughter's doctor laughed at us about the fact that my daughter's pain in her lower back stopped aching and her neck starting hurting instead. It was one nightmare after another for the last 14 years. She has lost having an opportunity to be a mother and have a normal llife like the rest of us. I am going to be angry for a long long time. I am boiling right now about the neglect and I think Governments would be wise to realize that they better fund in a way that ensures the capacity is there for a healthy program. If my government doesn't do something responsible soon to take some kind of leadership to get testing available in the country and to make strides to find treatments, I am going to be even more angry.

The funniest thing is that I told my daughter's doctor last week about the discovery that a retrovirus may be causing cfs. She has been physician for about 25 years and she said that they had pretty well figured out through the years that it was a virus or something like that. I thought to myself, if it was so obvious through the years to her then it must have been on the minds of other doctors too. Why didn't they spend some money to investigate. Shame. Shame.

 

[Stone]

Do you think that man-made virus that was cooked up in the 1980's and escaped into the population could have anything to do with the CDC's actions? It would sure explain a lot, including why funding is so dismally and disproportionately low. Would this explain the government's lack of funding for research in a disease which results in BILLIONS of dollars in economic losses each year? Is it economically more feasible to cover up CFS than to risk being held accountable for it? Assuming they are the responsible party, that is. Just wondering.

 

[Andrew]

They see no need to conduct tests correctly because they believe they are not going to find anything anyway. They see no need to respect research that disagrees with them because they are closed-minded and lacking in professionalism.

 

[SOC]

Do you think that man-made virus that was cooked up in the 1980's and escaped into the population could have anything to do with the CDC's actions? It would sure explain a lot, including why funding is so dismally and disproportionately low. Would this explain the government's lack of funding for research in a disease which results in BILLIONS of dollars in economic losses each year? Is it economically more feasible to cover up CFS than to risk being held accountable for it? Assuming they are the responsible party, that is. Just wondering.

I don't think so. There's evidence ME/CFS (therefore, theoretically, XMRV) existed long before the 80's. Also, I'm fairly certain some researchers said they believe, based on the structure of XMRV, that it's been in humans, at some level, for hundreds, if not thousands of years.

 

[taniaaust1]

There could only be one cause.. MONEY!! That is all most government depts usually care about.

Whether it is Insurance companies (it could be).. or governments who feel their health systems wont cope with a crisis on this level (if the treatment for XMRV is 3 AIDS drugs and we all need that treatment.. where would the funds come from?) ... who knows.

 

[usedtobeperkytina]

conclusion early when evidence was scant. Once a paradigm set in (based on sexism and ego), it became institutional and humility is not in the vocabulary of government agencies or scientists, for that matter.

Tina

 

[SOC]

conclusion early when evidence was scant. Once a paradigm set in (based on sexism and ego), it became institutional and humility is not in the vocabulary of government agencies or scientists, for that matter.

Tina

This sounds like the most likely explanation to me. Sad, but true. Although I take exception to the implication of lack of humility in government scientists in general. Agencies, on the other hand....

 

[Robyn]

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[Sean]

I think Tina is probably right, it is a combination of factors. And, being human, once they have taken a wrong stance for a long time, it is very difficult for them to change direction without serious loss of face and authority, and possibly some funding.

 

[SOC]

Who's to know that the disease from the 1800's is the same disease going on today. They could of had atypical MS or rheumatoid arthritis. incidently those were 2 conditions also thought to be mental disorders in the 1800's.

Indeed, we don't know. I'm just speculating. I said (about the speculation of XMRV being an 1980 vintage escaped manmade virus), " I don't think so." Just because I think it isn't true doesn't mean it's not true. I'm not that good.

And which researchers have said that XMRV has been in humans for years. I'd like to read up on that.

I'm not up to hunting for it tonight. If I thought this was a scientific debate I'd have supplied sources. I thought we were discusssing and speculating. If I missed the intent of the thread, then my bad -- I apologize.

 

[George]

First document cases of CFS was in the USA in 1934 at LA general hospital. Once a retrovirus makes it into the population it multiples. Start with 20 then it goes to 140 then 720 then 5000 then 180,000 until it reaches epidemic proportions. That's where we are now. In the 1980's the problem had reached a level that it "showed up so to speak" Just like AIDES really "showed up" in the 70's and could no longer be written off as being the suisidal tendency of gays, prostitutes and drug users. But you guys know all about this.

When the outbreaks first happened they happened to Doctors and nurses so they got documented and they were take seriously. On the other hand they were so rare that there wasn't a way to really study the problem until another outbreak happened.

By the 60's and 70's the illness was dismissed in the general population as being tiered women who were trying to do to much or men seen by their individual doctors were considered burnt out, unsupported, or to have poor blood. There still were not enough infected individuals (even though it was now showing up in the general populations to really get noticed.

The 80's saw more outbreaks in the general population as well as a rise in the individuals who were reporting the problem. By now there were close to 2 million people effected world wide. Still not enough to engage a resource as prestigious as the CDC. This wasn't AIDES. No one was dieing horribly (that they could see) Many CDC officials thought that it was just groups of people trying to get attention. AIDES was so big at the time and the CDC was speaking for the global community at that point. Even today America and the CDC do more for AIDES prevention and cure than any other country.

But now we have a different problem entirely, OVER 17 million are ill. The next exponential jump in numbers is happening now. Based on the AIDES tables 17 million goes to 184 million next.

That 3% of infected healthy controls won't stay healthy forever. So what happens when the number of ill world wide hit 184 million?

 

[George]

Hey ya Robyn

Both Bell and Hyde have data on this I'll try to post links to info on the web but there are a couple of books as well.

PS all of the sources are listed here on the boards somewhere as well.

 

[Robyn]

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