CDC crimes - what do patients want?

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The CDC had been the main obstacle to patients. Spreading lies, abuse, misinformation, and blocking research. Once the truth about this disease is known to the world, what do we want to see happen with the CDC?

Personally I think the places needs to be shut down and replaced. What do others think?
 

justinreilly

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The CDC had been the main obstacle to patients. Spreading lies, abuse, misinformation, and blocking research. Once the truth about this disease is known to the world, what do we want to see happen with the CDC?

Personally I think the places needs to be shut down and replaced. What do others think?
I don't know. We certainly need an admin agency that controls and prevents disease especially infectious disease; and that does a much better job overall (not just with regard to ME) than CDC does.

I don't know enough about what the problems are at CDC that causes them to do a lousy job. I have heard anecdotally that some of what the do is very competent and honest so i would say we need an ad hoc 'blue ribbon' panel to seriously investigate CDC as a whole including their misfeasance and nonfeasance re ME, Lyme, Emerging Diseases etc to see whether it's just certain people need to go to prison or the whole CDC needs to be revamped or started from scratch.
 
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That sounds reasonable. Management would also need overhauling, where were they? Sometimes a public body gets so out of control that the only solution is to start again.
 

Mya Symons

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The CDC had been the main obstacle to patients. Spreading lies, abuse, misinformation, and blocking research. Once the truth about this disease is known to the world, what do we want to see happen with the CDC?

Personally I think the places needs to be shut down and replaced. What do others think?
The CDC is usually pretty effective at preventing disease from spreading, even offering help to other countries when there is some type of outbreak. It is still baffling that they "dropped the ball" so hard on CFS/ME and the connection to a retrovirus. Maybe the whole of the CDC does not need to be shut down, but instead they should dissolve the CFS/ME department (fire everyone who had any connection to the original outbreaks and those ridiculous psych studies) and start all over with different employees and a diffferent department with a different name for the disease. Someone mentioned in another post calling the disease caused by XMRV, XMRV AIDS. I thought that was an excellent idea and more then sufficient to get people thinking and moving. How about the XMRV-AIDS divison of the CDC?
 
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The department and the management should definitely go. The damage that the CDC has caused makes it unlikely that patients would want them to ever have anything to do with this disease again. There're incompetent. Surely others in the place could see what was happening? Either they too did nothing or they were ignored. How will anyone in the world have confidence in an organisation like that. Perhaps they need rebranding, and not a complete shut down, but those directly involved should go. This entire saga needs investigating, and protections put in place.
 

floydguy

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My suggestion would be for the CDC to go back to its roots of just preventing/containing infectious disease. Let some other group do the research on emerging diseases. A good start would be to slash the budget by 50%. That might help refocus their priorities.
 

Kati

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CDC needs to admit its wrongs, its crimes, and the damage they have created. They will never be trusted again (they haven't in a long time anyways).
Their website needs to come down- public apologies need done, and the government/ HHS needs a panel including patients to decide where the research money will go.
 

shiso

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I agree that CDC's actions and inactions with respect to ME/CFS rise to the level of immoral, if not outright illegal (not dismissing the possibility that outright illegal activity could be discovered with proper investigation), conduct.

In response to "what do ME/CFS patients want?" I want a government agency division (I couldn't care less whether it's CDC, NIH, or some other division or lab or office within HHS) that consists of extremely competent scientists who come to work every day and actually strive to find a cause and a cure (I don't care what their motivations are), who collaborate with the top private researchers and clinicians in the field, an informed and proactive program leader with a plan to come up with a cause and a cure, and the federal funding to make it all happen in the shortest timeframe possible.

But I don't know what that would take in practical terms. As you say V99, the people that are employed in the CDC "CFS" program now (notwithstanding the removal of Reeves) are useless as evidenced by their recent publications, and I would think the only logical thing to want would be to have them go, and be replaced. The question is, by whom? And without the higher ups in government taking the disease seriously (under HHS's advisement) we're unlikely to get very far, because the brightest people in the world still need incentive that they are working on something important, and of course, funding.

As an end goal, I care less about bringing individual CDC workers or the whole institution to justice (though it would be satisfying) than having a properly funded, ambitious and competent federal research program. When I hear people saying they want CDC out of ME/CFS completely, I understand the thinking and feelings behind it, agree CDC has been a total failure and should be exposed for it - and also agree that no program is better than a program with a harmful agenda - but I still feel like we are entitled to a proper government research program just like people who happen to have other diseases. It can't just end with CDC getting out of the "CFS" business and only leaving ME/CFS patients with bits and pieces of different agencies working on XMRV (with "CFS" on the periphery of those studies) and the small number of existing private researchers applying for meager government and private funding.

Coming back down to the practical level again, I don't know. Some good science coming out in short order and having it speak for itself would really really help. Short of that I agree with Justin that what we may need is an effective formal investigation into CDC's malfeasance with respect to the disease, to get to the end goal of getting point across to the government that we deserve much better.
 
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Perhaps that 50% budget cut should go to a new organisation set up to deal with ME/CFS. It should have a board to oversea it's implementation, perhaps consisting of well know, experienced ME/CFS docs. Like Peterson, Cheney, Hyde, etc. You know the ones.

A thorough investigation should also aim to prevent such events from happening ever again. They should make recommendations, and those should be implemented immediately.

These people should be prosecuted with the full force of the law. Their crimes are no small thing, and they should be made an example of.
 

Frickly

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What the CDC has done is a "crime". Not only to those with ME/CFS but also autism and lyme. I would like to see them investigated for these crimes and the appropriate persons punished.
 

justinreilly

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Perhaps that 50% budget cut should go to a new organisation set up to deal with ME/CFS. It should have a board to oversea it's implementation, perhaps consisting of well know, experienced ME/CFS docs. Like Peterson, Cheney, Hyde, etc. You know the ones.

A thorough investigation should also aim to prevent such events from happening ever again. They should make recommendations, and those should be implemented immediately.

These people should be prosecuted with the full force of the law. Their crimes are no small thing, and they should be made an example of.
I think there should be someone competent appointed like Cheney, Hyde, Peterson, Mikovits or Whittemore to head a ME/AIDS-X Division of each of the CDC and NIH that reports directly to director of its agency (CDC or NIH). CDC puts out truthful information re ME. NIH is in charge of all research grants- NO internal studies done by the government. NIH gets a $1 Billion per year budget for grants for actual scientifically valid research. The grants are administered by a panel of actual ME experts- again Cheney, Hyde, Peterson, Mikovits, Whittemore, etc.

Reeves and company are prosecuted and imprisoned.
 
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People are certainly holding their breath right now, but if this monster starts to move in the next couple of weeks, the realisation of these crimes will be devastating to a great many of us. It's a mixed bag of emotions they will be leaving us with. Not everyone knows it's coming either.
 

*GG*

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My suggestion would be for the CDC to go back to its roots of just preventing/containing infectious disease. Let some other group do the research on emerging diseases. A good start would be to slash the budget by 50%. That might help refocus their priorities.
Mmm, I like your idea, especially if they are not going to do their job!
 

taniaaust1

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I think there should be someone competent appointed like Cheney, Hyde, Peterson, Mikovits or Whittemore to head a ME/AIDS-X Division of each of the CDC and NIH that reports directly to director of its agency (CDC or NIH). CDC puts out truthful information re ME. NIH is in charge of all research grants- NO internal studies done by the government. NIH gets a $1 Billion per year budget for grants for actual scientifically valid research. The grants are administered by a panel of actual ME experts- again Cheney, Hyde, Peterson, Mikovits, Whittemore, etc.

Reeves and company are prosecuted and imprisoned.
and the Weasel should be thrown in a pool with hands bound.
 

Stone

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I would like to get the ball rolling with the first course being tar and feathers, then a stint in the stocks on the Mall in Washington D.C. should be next. I'll make the drive to see that for myself. Car pool anyone? We can move on from there...
 

Stone

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With any luck, the CDC will soon find out what it's like...not to be believed.
Yes, but it won't be the same unless they're imprisoned in their homes, chained to their beds with the inability to maintain an upright position for decades. Ideally they should also experience the loss of their careers and dreams, too. Let's see if their families stick around and their marriages hold up under the strain. Then some 'scientists' can study whether or not they were molested as children, how stable their personalities are and if they are depressed. But I DO NOT wish this illness on any person, just to be clear.