As I understand it, swine flu actually wasn't any more deadly than other flus. The only thing that was really unusual was that it was killing mostly children, whereas most flus kill mostly the elderly. So yes, it was an unusual flu, and for that reason there was concern that it would mutate (as all flu viruses do) and become more deadly. The CDC overreacted, which caused everyone else to overreact into near panic. Afterwards a lot of people are frustrated with how the situation was blown out of proportion and the general populace tend to be determined to not let that happen to them again. So say we do actually have a serious flu pandemic (and there will be, we're overdue for one) and now the vast majority of people have trained themselves to take the CDC's paniced declarations of how bad things are with a grain of salt. That ultimately results in a cavilier attitude, not better safety. In essence, the CDC cried wolf, and each time they do that the public becomes less and less believing.
However, I don't believe the CDC is all that bad. Yes, they've been terrible about this whole CFS thing, but then again, their main concern is public health. A group of people complaining about symptoms shared by many other illnesses is understandably not seen as a public health risk or as something to pay attention to. Hopefully XMRV will change that.
I disagree with a lot of what the CDC says/does, for example, vaccines and hyping illnesses (did you know that in polio about 95% of the people who got it never even had symptoms? And most of the remaining percentage never became paralysed?) but I have to say, having lived in a third world country for several years, I'm thankful we have them. They're flawed, they share many of the same problems as the government does (since they're government run that isn't surprising) and there's no doubt they have vested interests. But when it comes to taking care of public health risk diseases, they're the right ones for the job, they're capable, and I'm glad they're there.
Once they find XMRV, they'll do the right thing.
I agree with some of this, but I am not so sure of the last statement.
A group of people complaining about symptoms that are shared by other illnesses and which involves a variety of systems and which symptoms are also associated with some psychological conditions, mostly happens in women in their 40s, with varying symptoms,and for which no known striking abnormalities are presented in objective tests is certainly a problem.
The conclusion from the beginning is the severe were likely misdiagnosed and actually have something else, and the mild have just hoodwinked alarmist doctors into believing their condition is not psychological, imagined, exaggerated or psychosomatic. Once that conclusion was made, it was going to take a big ugly bug under the microscope to change that conclusion.
CDC is not alone, many think science is about proof through evidence. Actually, much of science is belief based on evidence. Some things can't be proved, so there is a preponderance of the evidence that leads to a consensus, which is then considered to be truth, and any who diverge are wacko.
The problem I have with the CDC is that they never really talked to the patients at length in their investigation. As Hillary pointed out beautifully, talking and listening to the patients used to be considered important part of the evidence. Once microscopes and blood sampling was discovered, especially for researchers, that model was replaced. A key part of the evidence in this illness was hearing the patients recount their story, step by step. Hillary pointed out a few doctors who had preconcieved notions whose thoughts changed after they saw, patient after patient after patient. Any doctor, or researcher, who takes a little time to hear patient after patient after patient will see a pattern emerge. It isn't perfectly matchy - matchy in each patient, but you can see the pattern. I notice it with patients. As someone said, patients themselves can notice when someone has something else or is faking it.
Another problem with the CDC is that they formed their conclusions and would not consider new evidence as it emerged from Incline Village. As Peterson and Cheney started noticing abnormal MRIs etc, they did not put these features together. Again, it was going to take a big bad bug under the microscope to change them then, everything else was considered just within the range of normal or likely another illness. The failure is that any new piece of evidence was taken and analyzed on its own and not put together with the other evidence to see a new picture. It was just seen as, "that can't explain it all and it doesn't show up in all." Each piece seen individually is true, but put together all the pieces present a different picture. CDC in their tunnel vision, could not see the big picture.
And they also did not see the big picture of other or previous outbreaks of similar illnesses. The Key West thing, the Lyndonville thing, the ME in the UK put with Incline Village paints a different picture than just looking at Incline Village alone. They failed to take the investigation to that level. They failed again to see the bigger picture and what evidence could be discerned by these other outbreaks of an illness that represents with similar symptoms.
And of course, then we had misspending of funds, normal overall government beaurocracy where it takes $4 million to accomplish something the private sector could do in half the time at half the cost (just the nature of government) and then you have that government funding is scant. The CDC is partly to blame for this. They did not see it as an overall public health threat (no big bad bug under the microscope) so why put it up high on the priority list for funding.
The fact that CDC included studying childhood trauma as part of their investigation in recent years shows where their beliefs were. I am not saying that might not be useful, if for no other reason than to eliminate that as an issue, but the evidence from other researchers seems to have been put on the "not credible" side while the CDC went forward to prove what they believed.
I have noticed a pattern in CDC though. They seem to be very good at detecting, investigating outbreaks of KNOWN infectious agents. But do we know of any new pathogen that the CDC discovered? HTLV, done in private labs; HIV, done in private labs; that bacteria that causes ulcers, done in private labs. So, in that, we are not alone. It is evidently a systemic problem. If anyone knows of one they "discovered" please post it here.
And, I have also been thinking, I think we could make a strong case for gross lack of funding that is entirely inappropriate to the public health threat that was evident in the late 80s and 90s, based on the big picture. But, there are illnesses that cause severe suffering that deserve attention too. From a human suffering level, total number of people in that severe state, there may be some other illnesses worse than us.
Huntington's disease. One of the cruelist diseases there are. I have a high school classmate, salutatorian, who is institutionalized, has been since his mid 30s. It is horrible.
ALS. How awful is that.
I have a friend, a woman, only 44 years old who is bedbound from a stroke.
Some cases of MS
Lupus. My employer's mother has lupus and is in and out of hospital. Some cases are severe and the body actually attacks internal organs. It often leads to death.
Well, you get the idea. We have some of us that are suffering terribly, seizures daily, etc. But number of our severe cases to number of other illnesses that cause similar suffering, well, we are not alone. They have known of these other illnesses and can pinpoint much more about the epidemiology of these other illnesses, yet, is there a cure? How many breakthroughs have their been in these illnesses in the last 10 years?
The difference with CFS is the outbreaks and the number involved. This is why it is more of a public health threat than the other illnesses, which are lower in numbers and seemingly not infectious. The CDC deals with the overall public health threats more than which illness causes more suffering.
Sad, but true.
If they had taken off their blinders, they could have seen that CFS posed a real public health threat to the public at large. Sometimes a person will only see what they want to see.
Considering this case, I don't think we can trust the CDC to "do the right thing." They have just as much of an interest in covering their own failings to save themselves in this situation as they do protecting the public. They are part of the problem, so it would take some real balls to stand in front of the camera and admit that. Is it possible there is a real man of integrity there? One who is willing to put the public health above their own reputation and the reputation of their institution? We will see. I have had close dealings with people in government for years, the instinct is to protect oneself from accountability from the public's outrage. Cover up is considered safer. Ironically, it almost always makes things worse.
Does anyone remember Bill Clinton? "I did not have sexual relations with that woman." He lied (or did not tell the whole truth) under oath and did the same looking straight at the camera at the public who had their trust in him. What would have happened if he had fessed up. It would have been a scandal for a month. Instead, his cover up led to more and more sins and an impeachment, and further disgrace.
Perfect example is King David in the Bible.
It is so difficult to say, "I (we) made a mistake. We are sorry. We will do better. Please forgive me." But failing to do that, you just give more tools to your enemies to use to kill you.
Tina