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CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

SOC

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The main purpose of my email was to clarify what is a contradictory perspective on CFS by the CDC. My emails question was essentially setting a subtle trap for Dr Unger.[/URL]
You do realize that this is a public, searchable forum? That means if the CDC is playing a serious CYA game, they could be monitoring the internet for signs their plan isn't working. :cool: They could easily have their evil minions watching these forums. You might want to be a little more secret with your secret plans. ;)
 
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What concerns me, and I think I'm repeating others here, is that even though the CDC has changed its definition of CFS, current ME/CFS patients who are XMRV- are going to be grandfathered into the new definition. Then they won't get the right testing -- immune system testing, persistent infections, NMH/OTS/OI testing -- to verify that they have a physiological illness, even if it isn't XMRV.

We're going to have to watch the CDC very carefully on this one. We cannot let them pretend their research definition is a diagnostic definition. If they want a definition of exclusion, then we need to make sure that they actually define enough testing to exclude true physiological abnormalities. Patients should be able to get tests that will identify physiological conditions. It's a no-brainer to list tests that are abnormal in a substantial number of currently defined ME/CFS patients and should not be abnormal in psychiatric patients.

Yeah, it's scary.
See this: The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).

It looks like they are saying their empiracal is for clinical diagnosis also. But, the diagnostic criteria on that page says the same thing it has been, doesn't mention the psychological as one of the bullet points.

http://www.cdc.gov/cfs/education/wb3151/chapter2-2.html

Tina
 

muffin

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Sickofcfs is correct in keeping our cards close to our vests. But, in many cases we want the CDC and other Federal health orgs to KNOW that WE KNOW what games they are playing and that we have made them as public as possible. Again, the CDC and others are like crazed, cornered rats. That's what we want. We will get them, I am sure of this, and once the lid comes off of what all the CDC and others have buried for 30 plus years, the walls of the CDC are going to collapse in on them.

Thomas R. Frieden, MD, MPH - Enough with the 50 state anti-smoking schtick you have going. Clean house at the CDC and do the right thing and look into what has been goingn on with CDC/CFS and the damage that this group of people have done to the American public (and the rest of the world as well), vis-a-vis CFIDS, Retrovirus research, and now XMRV. Enough with the friggin Anti-Smoking stuff! Get your priorities in order and quit playing stupid little games like this. Dear God. Can't they find one single person to head up the CDC and have the brains and guts to really clean house and see what the public is screaming and yelling about???

Just a rant. I thought Frieden might do the proper job but apparently not. What IS IT with the CDC that makes it such a wasteful, worthless, destructive organization??? Is it THAT hot in Atlanta? Boils the brain or something?

Ranting. Ignore. Except for Frieden...You buddy better start listening to the public - those people that PAY your salary. Remember?!?!?!?!
 
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You do realize that this is a public, searchable forum? That means if the CDC is playing a serious CYA game, they could be monitoring the internet for signs their plan isn't working. :cool: They could easily have their evil minions watching these forums. You might want to be a little more secret with your secret plans. ;)
Yes, Im aware that this is a public and searchable forum.

If the CDC were reading these forums, I think they might be able to learn a thing or two about XMRV including how to find it!:D

Regardless of whether Dr. Unger knows Im setting a trap for her, she still has to clarify a contradictory state of affairs. Do the treatment suggestions on the CDC website apply to CCC patients? If they do then they have no contingency plan to prepare for the XMRV-CFS connection and no plans to cover their own bases.

If the treatments dont apply to CCC patients, then this is more evidence that they are preparing for the XMRV-CFS connection to be significant.

Even if Dr Unger knows about my trap she still has to answer the question one way or the other.

This scenario reminds me very much of George Orwells Doublethink.
Holding two contradictory beliefs in one's mind simultaneously, and accepting both of them.
 

SOC

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Yes, Im aware that this is a public and searchable forum.
I hope you realize I wasn't criticising you! I was just thinking how funny this whole situation is. If sensible people could actually talk and get sensible answers, we wouldn't have to go through all the shenanigans we do to try to get straight answers out of the CDC.

If the CDC were reading these forums, I think they might be able to learn a thing or two about XMRV including how to find it!:D
If only!

Regardless of whether Dr. Unger knows Im setting a trap for her, she still has to clarify a contradictory state of affairs. Do the treatment suggestions on the CDC website apply to CCC patients? If they do then they have no contingency plan to prepare for the XMRV-CFS connection and no plans to cover their own bases.

If the treatments dont apply to CCC patients, then this is more evidence that they are preparing for the XMRV-CFS connection to be significant.
Absolutely! These are all questions the CDC has to answer. The question is how the heck to get a straight answer out of them. Can we send Anderson Cooper after them? He's running out of things to talk about in the Gulf, maybe a little side issue for him to deal with while the next phase of disaster plays out in the oil mess. ;)

This scenario reminds me very much of George Orwells Doublethink.
Holding two contradictory beliefs in one's mind simultaneously, and accepting both of them.[/QUOTE]

Yup. Amazing doublethink.
 

SOC

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See this: The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).

It looks like they are saying their empiracal is for clinical diagnosis also. But, the diagnostic criteria on that page says the same thing it has been, doesn't mention the psychological as one of the bullet points.

http://www.cdc.gov/cfs/education/wb3151/chapter2-2.html

Tina
**sigh** I swear they know exactly how to mess with my ME/CFS-addled brain. I get past the first paragraph and the words start to dance and my mind wanders....

Their empirical is a pile of manure, or it was the last time I battled my way through it. As a sieve it works about as well as chicken wire. How anyone can take it seriously....

Now you're telling me, I think, they they're contradicting themselves at their website with regards to diagnostic criteria? **sigh** My head aches.
 

muffin

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Even if Elizabeth Unger (CDC/CFS) doesn't have input into that website and the info on it, SHE SHOULD. She may be interim, but that does not mean she can't do her job. And part of that job is ensuring that the information on CFIDS that goes on the website and out into the public domain is correct. Not only correct but ethical. So, where does the blame start on this? At the top of this program regardless of who ginned up this stupid website. And that's who I am going to email and ask why the website is so confusing and what games are they playing that the public is now very much aware of.
We all assume poor Unger would rather be hiding in a closet rather than facing the CDC/CFS morons and us, the very sick. Too bad. Do the job or ask to be moved.
Not a bad idea to hit Under with emails telling her to get on the stick and have a look at what they are putting out on that cdc/cfs site. Since she is now the CDC/CFS program head, she has to stand behind whatever garbage they put out there - even if it is Reeves and the psychos he's working with. Or, the CYA/PR department at the CDC.

eunger@cdc.gov Elizabeth R. Unger, PhD, MD, - basically, she is a pathologist and not one for politics it would appear. Too bad. Do the job and do it right. Ethical behavior would be included in that job discription - seems they forgot to put that in most of the job descriptions at the CDC.
 

jackie

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actually...i was thinking of anderson coopers 360 and the cdc debacle just the other day...................................................?
 
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Well, I said I would let you know. I did talk to someone at the CDC, someone whose name is likely known by you guys, although I was not familiar until I looked up the name after the call.

But I find myself in an ethical dilemma. I am a reporter by trade. And in my work, I do not report on CFS issues. I am now just doing local fluff stuff for another newspaper. (As some of you know, I used to have my own, but had to close it.)

When I called the CDC, I was calling as a patient. Therefore, I did not say anything about being a reporter to him. I was asking for my own pure need to know what I truly have. But now I wonder if I asked him questions and then relay them here, then am I a patient relaying information (which requires no disclosure) or am I being a reporter (which ethically requires disclosure). The lines are blurred of what is a reporter and what is a patient relaying answers she was told about her own condition. But so as to not to even inadvertently make someone feel they were tricked, I am only going to tell you the general position of CDC. It is unethical for a reporter to ask someone questions to report without revealing what they are doing, unless they are doing "undercover work." Of course, as I said, I was asking as a sick person, not doing undercover work. But if I relay too much of the discussion, then it could be construed I am acting like a reporter. So, generally, their position is:

Yes, CDC considers ME to be different from CFS, no matter what others say. They are not studying ME. It would be difficult to find a knowledgeable doctor for ME in the US. There is no test for either one. A person should describe their symptoms to a doctor who can then look for underlying biological cause instead of going to doctor asking if they have a certain disease. Treat the abnormalities found to see if it eliminates the symptoms.

Tina
 

SOC

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So, generally, their position is:

Yes, CDC considers ME to be different from CFS, no matter what others say. They are not studying ME. It would be difficult to find a knowledgeable doctor for ME in the US. There is no test for either one. A person should describe their symptoms to a doctor who can then look for underlying biological cause instead of going to doctor asking if they have a certain disease. Treat the abnormalities found to see if it eliminates the symptoms.
:eek: [We need an utter incredulity icon]

"I'm glad I don't have their nerve in my tooth."

When are we going to get a clear statment from the CDC on this? I want the $10 I bet my PCP that the CDC was going to claim I was misdiagnosed with CFS.

I said early this month that this was all a CDC CYA campaign, but now that we have confirmation, I'm completely astounded.
 

muffin

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Tina said:
"Yes, CDC considers ME to be different from CFS, no matter what others say. They are not studying ME. It would be difficult to find a knowledgeable doctor for ME in the US. There is no test for either one. A person should describe their symptoms to a doctor who can then look for underlying biological cause instead of going to doctor asking if they have a certain disease. Treat the abnormalities found to see if it eliminates the symptoms."

Am I shocked by this? No. The CDC is desperate to seperate themselves from the XMRV studies that they know are going to put the last nails in their coffin and call into question many, many issues that have been asked over and over by the CFIDS/ME sick and the advocates. So, seperate ME from CFS and you dodge answering those questions. You change the terms of the battle. But this is not going to work - regardless of what the CDC calls CFIDS/CFS/ME. They cornered themselves and now they look like the liars they are. After we make it known that the CDC lies (more and more lying, see press on CDC problems with lying to the public) - and that they hid a deadly virus from the public, it will not matter what they call CFIDS/CFS/ME. Sociopath Reeves, his followers, his contractors and the sociopaths in the UK are going to hang.

The really ugly part of this battle is about to start. Get ready.

By the way Tina, for what it's worth: I consider you a sick person in regards to CFIDS. You do not report on CFIDS and you never have. No conflict of interest that I can see. But good work being a sick person and taking the bull by the horns and calling and asking. thanks for doing that.
 
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I am sorry, but I am at a loss here. Maybe I missed something, and if I did, my bad. But the CAA has funded several studies which demonstrate physical abnormalities in CFS patients. For instance, the study in California this year showcasing the severe effects of PEM. By definition, the CAA's constituency are CFS patients. Has the CAA responded directly and defiantly - and with those studies as proof - to the CDC yet? Isn't that part of its charter? I fully appreciate we need to individually react, and maybe even coordinate a response from this forum. But the aggressive support of the CAA can only help and, to me at least, seems a no-brainer.
 
C

Cloud

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Am I the only one flabbergasted by the CDC's position here?
I'm not at all surprised.....in fact, I expect it. The CDC is a broken machine that is unlikely to be easily repaired. Systems that have gone that far awry need dismantled and rebuilt. I won't ever trust that they have our best interests at heart.

Thanks to all who have been writing and confronting the problem. We need to get really loud.
 
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While they don't believe a laboratory test can be used to determine the illness, that does not mean biological abnormalities are not in the illness, but no one test is in all with the illness.

CDC says: In various animal and human studies childhood trauma has been associated with low resting cortisol levels, altered stress response, increased inflammatory markers, and cognitive impairment.

CDC says: Upon stress exposure, our central nervous system will activate hormone and immune responses that help the body to maintain balance during stress.

CDC says: There is evidence that childhood maltreatment may alter the way how the body’s regulatory systems respond to stress.

The above is from the website.

You will notice they say that there are biological responses to stress and in some with childhood adversity, this normal response can be altered. Sounds reasonable, huh? Acknowledge abnormal biological responses. Why this fits low cortisol, high cytokines, neurological problems and just about all the others, including PEM.

It is the same biological data that can fit their theory, just as well as Teitelbaum's and Klimas' and Mikovits' theories. The difference between them is what was first cause.

Tina
 

SOC

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So how is a patient to know whether s/he has ME or CFS, according to the CDC? Or is this the question I need to ask the CDC directly?

I've been trying to find and read a defn of ME before I call the CDC, but reading has been exceptionally difficult for me the past week or so. :sad:

Can anybody help me out with a clear difference between ME and CFS? Or does such a thing not exist?

Sick [feeling so stupid the past few days -- did I just not notice before, or is my cognitive function getting worse?] :worried:
 
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Within the past week, CDC-INFO has responded to emails that have questioned the difference between CFS and ME. CDC-INFO have answered the questions by stating:
Myalgic encephalomyelitis is a synonym for chronic fatigue syndrome (CFS) that is commonly used in the United Kingdom and Canada.
This contradicts what usedtobeperkytina was told by the CDC.
So, generally, their position is:

Yes, CDC considers ME to be different from CFS, no matter what others say. They are not studying ME. It would be difficult to find a knowledgeable doctor for ME in the US. There is no test for either one. A person should describe their symptoms to a doctor who can then look for underlying biological cause instead of going to doctor asking if they have a certain disease. Treat the abnormalities found to see if it eliminates the symptoms.
CDC-INFO has also contradicted what appears on their website http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html
On their website (updated on the 21st of July 2010) it states
The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.
 

CBS

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Here is the full paragraph from the CDC on definitions:

Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.
If I were at the CFIDS Association of America, I'd consider this a frontal assault on the organization.

So according to the CDC, you are either CFS or ME but they know nothing of ME.

The CAA and the IACFS/ME have to come forward on this issue.