Hi, I'm cross posting this from the MAD social group, because I don't think too many people have seen it over there.
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Here's mine. I know I kind of went out on a limb bringing in the DeFreitas' retrovirus because there is no proof it's XMRV right now, but what the heck - it's what we're all thinking, isn't it?
Thanks Tom K. for the suggestion to ask for Peter White to be ousted too. I included that.
If anyone wants to use or copy any part of my letter, feel free to do so.
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The track record of the CDC concerning CFS over the past 25 years has been abysmal, negligent and criminal. During the Incline Village outbreak of 1985, the CDC couldnt find a viral cause of the illness, and so it claimed that CFS must be psychological. The CDC then proceeded to minimize and psychologize the illness every chance it got, ignoring the mounting evidence of the thousands of studies proving otherwise.
In 1990 Elaine DeFrietas found a novel retrovirus associated with CFS. The CDC couldnt (or wouldnt ) replicate her study and proceeded to discredit DeFreitas and her research. This lost opportunity is just one small example of the abuse we patients have suffered at the hands of the CDC.
Lo and behold, 20 years later, the Whittemore Peterson Institute has found a retrovirus, XMRV, strongly associated with CFS. Considering that this is only the 4th retrovirus discovered in humans, its highly likely XMRV is the same as DeFrietas retrovirus. They were able to do this in only 2 years with only $1 million dollars.
How many years and millions of dollars has the CDC wasted on producing nothing? How many patients have suffered, become disabled and impoverished, and died because the CDC has been giving us lip service, instead of real service.
We have been telling you this for the past 25 years and you havent listened the illness is a real biological illness, not psychological. The horrible name CFS causes us not to be taken seriously by doctors, disability insurance companies, our friends and families. We have a serious illness and we cant get diagnosed, much less get proper treatment or a cure.
And now XMRV has been found to have an incidence of 4% in the general U.S. population. By comparison, another retrovirus, HIV, has been termed an epidemic at a mere 0.6% incidence. Lest you think XMRV is not that serious, its also associated with prostate cancer, fibromyalgia, and atypical MS, which researchers say is likely just the tip of the iceberg.
The CDC has a choice, it can continue on its psychological track, looking outdated, negligent, greedy, and foolish, or it can get with the program and start giving us CFS patients the treatment we really need and deserve.
To do so, the following changes are required NOW, not another 25 years from now:
1. Top level management who support a psychological cause to CFS should be removed - William Reeves should be fired; ties with Peter White should be cut.
2. The name "chronic fatigue syndrome" should die a quick death and be replaced with Myalgic Encephalomyelitis.
3. The empirical definition (which 38% of the time misidentifies depression as CFS) should die a quick death and be replaced with the Canadian definition
4. The proposed 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.
=-=-=-=-=-=-=-
Here's mine. I know I kind of went out on a limb bringing in the DeFreitas' retrovirus because there is no proof it's XMRV right now, but what the heck - it's what we're all thinking, isn't it?
Thanks Tom K. for the suggestion to ask for Peter White to be ousted too. I included that.
If anyone wants to use or copy any part of my letter, feel free to do so.
=-=-=-=-=-=
The track record of the CDC concerning CFS over the past 25 years has been abysmal, negligent and criminal. During the Incline Village outbreak of 1985, the CDC couldnt find a viral cause of the illness, and so it claimed that CFS must be psychological. The CDC then proceeded to minimize and psychologize the illness every chance it got, ignoring the mounting evidence of the thousands of studies proving otherwise.
In 1990 Elaine DeFrietas found a novel retrovirus associated with CFS. The CDC couldnt (or wouldnt ) replicate her study and proceeded to discredit DeFreitas and her research. This lost opportunity is just one small example of the abuse we patients have suffered at the hands of the CDC.
Lo and behold, 20 years later, the Whittemore Peterson Institute has found a retrovirus, XMRV, strongly associated with CFS. Considering that this is only the 4th retrovirus discovered in humans, its highly likely XMRV is the same as DeFrietas retrovirus. They were able to do this in only 2 years with only $1 million dollars.
How many years and millions of dollars has the CDC wasted on producing nothing? How many patients have suffered, become disabled and impoverished, and died because the CDC has been giving us lip service, instead of real service.
We have been telling you this for the past 25 years and you havent listened the illness is a real biological illness, not psychological. The horrible name CFS causes us not to be taken seriously by doctors, disability insurance companies, our friends and families. We have a serious illness and we cant get diagnosed, much less get proper treatment or a cure.
And now XMRV has been found to have an incidence of 4% in the general U.S. population. By comparison, another retrovirus, HIV, has been termed an epidemic at a mere 0.6% incidence. Lest you think XMRV is not that serious, its also associated with prostate cancer, fibromyalgia, and atypical MS, which researchers say is likely just the tip of the iceberg.
The CDC has a choice, it can continue on its psychological track, looking outdated, negligent, greedy, and foolish, or it can get with the program and start giving us CFS patients the treatment we really need and deserve.
To do so, the following changes are required NOW, not another 25 years from now:
1. Top level management who support a psychological cause to CFS should be removed - William Reeves should be fired; ties with Peter White should be cut.
2. The name "chronic fatigue syndrome" should die a quick death and be replaced with Myalgic Encephalomyelitis.
3. The empirical definition (which 38% of the time misidentifies depression as CFS) should die a quick death and be replaced with the Canadian definition
4. The proposed 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.
