Discussion in 'Fibromyalgia Main Forum' started by simonedb, Aug 23, 2010.
"Imagine the costs to the agency—in terms of money and its international reputation—should it be forced to admit it had been wrong about Tahoe, wrong about everything having to do with this disease?"
That's it?! That seems weak. If that's the only reason it seems like it was more trouble and work to downplay CFS than just say something like "based on additional information we'd like to update our understanding, blah blah blah".
It seems like there's more to it than that.
And so thankful that Hillary got the documentation of this.
On Facebook, I spoke to a highschool friend who works at the CDC
and told him what was going on at the CDC.
He said, "they can't know everything all the time...don't blame them".
ARGG!!! He needs a copy of Osler's Web.
The NIH was solidly behind the CDC because of a study that proved that rats
temp rose when they were under stress.
A doc I saw there told me "Fever is a learned condition in children. They learn
it from their mothers".
This doctor had FM and attributed to the stress of modern life.
Stephen Straus, MD who was in charge of CFS study, at first was onboard with
it being a real disease. Saw very,very ill people with it. Duke educated people But, and this is the part I will never know, changed his mind.
When he saw me, he only asked psychological questions though my t-cell count was
that of a person with AIDS 185 when the normal at the time was 1,000. They have
since lowered it to 500. That was 1991.
But the CDC were the first responders and I hold them responsible.
I suspect that someday it will be discovered that CFS was caused by a biologically enhanced virus, either deliberately set into a population or accidentally. Deniability is key to warding off liability. I realize this is the crux of every conspiracy theory, but one can't read 'Lab 257' without being completely disgusted with the government and its disregard for ethics.
Hillary is great. I am eternally grateful for Osler's Web. I cannot say enough good things about her.
But her speech doesn't quite explain enough to me either for this stonewalling to have continued for the last 26 years. Was it really a perfect storm of indifference to very sick patients, egos, laziness and absence of medical ethics at the CDC which has allowed them to ignore scientific evidence for decades? Are disability insurance companies really that powerful and corrupt to be able to influence the CDC like this? It does seem there has to be something more. But maybe not. I was thinking of AIDS and then realized that people were dying from that illness so it could not be stonewalled indefinitely like CFS. We don't die for the most part. That seems to be the problem.
It's hard to accept indifference and monumental egos and downright stupidity as the reason for the enormous suffering caused by lack of research and acknowledgment of this illness as real.
I take what Hillary Johnson says with a grain of salt. She says CFS is a pandemic which it's not. She exaggerates and catastrophizes events. I think she honestly believes what she says but if you reason like some in the CFS community when it comes to the CDC as well as other subjects, follow the money for her and you can see that she is selling a book. But that is not a critical way of thinking nor fair to her is it?
I have said this before but will repeat it. Hindsight is 20/20. While it may appear to be a conspiracy, how much of it can be attributed to medical knowledge known at the time?
I am not talking about the funds being diverted and to be honest that is the one area I need to do more research.
Do we get mad at the medical establishment, saying it was a conspiracy that the polio vaccine was not developed until the 1950s when there were outbreaks before much as CFS. We just did not hae the scientific knowledge before the 1950s.
It's important to take into account that by nature, a bureaucracy makes mistakes and sometimes one hand does not know what the other is doing. That does not mean the bad outweighs the good but something which we need to think of when processing the information at hand.
It's human nature to make mistakes or errors of judgement.
Yes, it is tragic that this happened, but do we move on improving the chances for progress or sit, wring out hands, dwell on the negative, lash out? While this is understandable at what point does this type of thinking paralyze the community to the point we can't get beyond what happened.
If we assume that the CDC had covered up information, isn't that like the assumptions that people sometimes make of us about it being all in our heads. We need to base our views on the facts without putting our own spin on it.
There is a part of the CFS community that is not helping the cause of CFS by being so negative, overgeneralizing, throwing out conspiracy theories based on little or misguided informations as well as wanting revenge, outright hysterics and dismissing a study just because it does not show what we want.
If anyone says that the above is not appropriate it is taken to mean that you don't believe the CFS exists nor want XMRV to be found. These are easy traps to fall into and helps us rationalize what has happened. But if you look at the whole picture, this does not help with scientific progress or our public image.
Science will provide more information but we have to be patient. That's hard to do but worth it. We don't want to base treatments on studies that have not been fully scrutinized.
Life is not like some books or movies where you can divide the characters into the "goodies" and the "baddies". It would be much simpler if this were true but the simple truth is usually somewhere in between.
This is exciting news, but lets not shoot ourselves in the foot.
ETA Please do not say I do not believe in the possibility of a virus causing CFS or that I don't want it to be found. This is simply not true Science will out.[This Message was Edited on 08/24/2010]
theres a difference between a mistake and incompetency, the cdc had a long time to do something about it and it took an outside non government agency to work it out. I believe maybe they didnt ignore cfs as in the conspiracy theory just incompetent.
I understand why you feel this way but how much of it is your personal opinion which is fine, and how much is fact. There can be different interpretations of facts. Please reread my post if you are confused about what I am saying. As to incompetence and conspiracy, well, we just do not know and may never know.
I am not trying to change people's minds. I am just stating my opinion.
Wouldn't it be lovely to just chalk all the negatives in life to incompetence? There is incompetence everywhere in the world but there is a fine line between incompetence and mistakes. It is easier to jump to conclusions after the fact. We have to add the human component as well as the context of the times to this equation.
I care, I really do. I just have a different slant on this and that is just as valid as other opinions, eh? I have a science/psychology background so tend to consider things such as above.
I am not being negative, just realistic which is my opinion. Please keep that in mind.
not arguing with u, just like u said my opinion. I just feel right from the start it appeared like a virus with immune abnormalities, but not much in the way of research dollars went towards it and what money was put into research was psychological stuff which i think is a very secondary thing.
Not a problem. I was speaking in generalities for any upcoming responses as this can be a contentious subject. I did not find your post argumentative at all.
Maybe now I am the one who is catastrophizing, LOL!!
There are those 2,500 to 4,000 research articles that proved immune
dysfunction in CFS.
Do you think I am saying there are not any immune dysfunctions in CFS? I don't understand what you are asking.
I am not sure what you are asking. Are you asking why hasn't the government (USA or UK?) provided funds to research cfids/me and come up with answers for us until TODAY--NOW? Or why has gov't not EVER helped in any meaningful ways not only now but in the past?
hey, I was just really struck by ms. johnsons thesis on it and wanted to share, seems plausible, its something I cannot completely resolve in my mind
I'm not sure who has the most power CDC or NIH. Collective, I suppose.
I did find the book written by a victim of CFS with an epilogue by Dr. Straus
Head of Research Virology and Infectious Disease at the NIH. Head of 'us"
in other words.
In 1987 and updated in 1988, he definitely believed it was caused by an unknown
Then by (as I said) 1991 he was totally into somatization. Somewhere along the
line, I believe he became a believer in Dr. Wessely the psychiatrist at Oxford UK..
Dr. Straus, I believe, had a lot of control over where and how research money
for CFS went from the NIH. They dreamed up this Twin Study that was actually
trying to prove the psychiatric side.
Ok, so the CDC was incompetent. Possibly relying on a highly intelligent Dr. Straus
for guidance. Maybe.
On his deathbed Dr. Straus was still writing the British Journal of Medicine about
CFS being psychiatric.
Get this one: Chronic Fatigue Sufferers at times have to be hospitalized (I am thinking
mental ward here) to teach them to get out of bed to eat their meals.
How sad for such a smart man to be so misguided. Not that I feel sorry for him...but for
They pinned a Metal of Honor on him while dying....that is how respected this man was.
Too, too weird.
I believe he died of a brain tumor? Ironically, it could have been caused by his exposure to virus research.[This Message was Edited on 08/26/2010]
but I am thinking it was the tainted Live Polio Vaccine, myself.
He would have been fighting tooth and nail to stop the XMRV if he were
still alive. He was a very, very persuasive man despite his problem
with being cross eyed. They seemed to worship him.
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