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

[leelaplay]

oh my gosh tina

I'm laughing out loud at this (or am I crying)

your next career may be in comedy - black humour - your insight is brilliant

I want to publish this for the general public it's so good, but unfortunately, only people informed about ME/CFS & its history would get all the fine nuances

brava

 

[Otis]

Website HIstory

archive.org takes snapshots of websites.

I've used it before for my old company and found it to be accurate. I don't know if it captures every page for something as large as the CDC site, but with the exception of things like video files I would imagine so.

Access is slow. This stuff may be on long-term storage archives such as tape or DVD 'jukeboxed' and may just take time to make accessible (pull it back to a hard disk). Here's a link to the CDC history. The most recent snapshots are dated Oct 19, 2009 & Oct 27, 2009. They go back to 1996.

You'll have to navigate to the CFS pages manually, using the web pages - the search box will take you to the current site.

Perhaps we can get a voluntary CDC web site historian, :Retro smile: so can we document this shuck and jive.

OK, I'm finally getting cfs web pages but I'm too lazy to change the above... To get to the Oct 27, 2009 cfs page click here.

The site format has changed so it's hard do a quick comparison but both the archived and current sites have revision dates at the bottom of the page.

 

[usedtobeperkytina]

I know I posted an excerpt on here from the CDC site about depression being different condition. I can't find it now. But it was a long thread and it was about whether to use CCC or other criteria.

Tina

 

[usedtobeperkytina]

From a standpoint of CYA, this change to website is good for them. Hopefully, people will forget that their CFS is the name of the illness that they studied in Incline Village, because that is the name they gave it. A few now-retired researchers had to be sacrificed, all for the greater good.

Now, to complete, they need to do a study where they find XMRV, doesn't matter what cohort. And, then they announce the discovery of a new disease which has likely been misdiagnosed as other illnesses for decades. Then, pressure journals to not publish studies that have XMRV with CFS in the title, like Science tried to do. Point out, that this new illness is the XMRV illness, CFS, by definition, can not be someone with this other illness.

Tina

 

[Mya Symons]

Interesting. I was diagnosed by a rhuematologist who supposedly new a lot about CFS, ME and fibro. He told me that I did have CFS, but I definately did not have ME. He said that ME was neurological. At the time, I did not know what any of it was so I did not ask him what the difference was. I had an MRI that was normal. Perhaps he was trying to say that those with ME have lesions on their brain that show up on an MRI and those with CFS don't.

I think all of us who haven't gotten the XMRV test should probably get it as soon as possible--As soon as the serology test is ready or they will be telling all of us who haven't got it that we have the psychological disease CFS not the real ME.

The doctor I saw was suppossed to be one of the most highly regarded experts on both FMS and CFS. I am wondering now if he would be involved with any of the CDC definitions. (I vaguely remember him talking about the abscence of lesions in the sense that it could not be ME without them).

It was six years after my worst symptoms when I was finally diagnosed. I also have a question on whether these brain lesions can come and go. Perhaps some people who have better immune systems than others or due to better heridity can heal themselves or possibly some people with XMRV don't get them at all? I go through periods where I have balance problems and my head is in that "cotton" fog and then I go through periods where I feel almost completely normal. Does anyone know a good place to start reading about the brain lesions caused by ME? Don't people who have lesions on their brain that show up on an MRI and who have neurological problems usually get diagnosed with MS or atypical MS?

One more thing I wanted to add. Plaque showed up on my son's brain, which I understand is an indication of damage. However, they told me it was nothing.

 

[muffin]

CDC CFS Website: Use the WAYBACKMACHINE

http://replay.waybackmachine.org/20090814115825/http://www.cdc.gov/cfs/

Seems the Waybackmachine went back last in August of 2009.

 

[SOC]

And, I saw the goal of differentiating the CFS from neurological patients was in the CDC study just published. SickofCFS, you can look on that thread and see Switzer's conclusion is that possibly the Science cohort have a neurological condition and not CFS. (and my point is that a good percentage of the Science cohort were Incline Village folks, although not all, and that is the very condition that initiated the term CFS. And now they say those people don't have CFS? So basically they will be throwing those investigators under the bus saying they missed the neurological condition that was in Incline Village. A neurological condition that was transmissable, as whatever was in Incline Village was? So does that mean Reeves was also wrong when he told a T.V. producer that it was hysteria?)

You know, it really is circular reasoning here:

Tina, love your CDC/Questionner dialogue! That is exactly how I imagine it. ROTFLMAO!

I've thought since I saw Switzer's conclusion that CYA was the reason for publishing that incredibly crummy paper. The carefully stated elimination of patients with neurological condtions was the key. And then the conclusion that the problem [???] with the Science paper might be that researchers included patients with neurological conditions.... WTF? Of course WPI and co included patients with neurological symptoms, we all have some neurological symptoms. It's your cohort that doesn't have any.... OH! Oooooh..... dirty.....

I know, and I imagine they know, that they just can't get around Incline Village. I think they're so desperate that they're hoping sweeping it under the rug is going to work. Clearly they're not expecting those of us mistreated under their watch to be asking questions. Silly them. [we need an evil grin icon] They've underestimated us for years, now it will bite them for real.

An interesting bit of research would be to compile all the changes at CDC since, oh, Nov 2009. Or maybe even mid-May 2010 when they initiated a slowdown of publication of the papers. What has happened internally and at their website, (or any other place a good investigative journalist might find info) that would suggest a rapid change to their approach to CFS?

Did CDC ask HHS not to allow Alter et al to call their cohort CFS patients? I dunno. Might be interesting to know....

I'm envisioning the CDC with its pants around its ankes and its @$$ hanging out, waddling desperately away from an ME/CFS pitchfork-bearing mob.

 

[bakercape]

OF course

There study showed an increased rate of CFS in abused children. There whole definition of CFS includes people with depression! So they dilute the definition so it includes lots of conditions including depression and bingo childhood trauma causes CFS! Unfortunately the general public and doctors could acuall buy this %%$%!
The CDC needs to get out of the CFS business! There our worst enemy!

 

[muffin]

My worthless brain is having a hard time taking all of this in right now, BUT, what I do very much understand is that the CDC has changed tactics on us, played games with their definitions, updated their website (added the CBT/GET from the UK Weasel), and are running scared and will do ANYTHING to stop the damage that they KNOW is coming at them like a train. Once those FDA and NIH papers are out, the CDC is going to look like what they are: Incompetents and trying to cover up several things including CFIDS, Retrovirus research of the mid 1980's and only God know's what else (funding misuse, other unethical or even federally criminal activities, etc.).

They are playing dangerous games with us now. We all must be on guard and watching every single thing they say and do. Good catch by the person who saw the updated 21 July CDC website. The CDC/CFS people or whomever, thought they could sneak that one from us but failed. They are desperate and getting more and more desperate. And desperate people do desperate things, as we all do know.

I am quite disappointed with Thomas Freiden, head of the CDC for NOT taking on this issue and finally getting it cleaned up and dealt with - regardless of the bad PR. It is HIS job to fix the CDC and this is part of that fixing.

Bottomline: We must keep a very strict eye on every single thing that the CDC does and says. Had those slides not been leaked to the Dutch and out to us, the CDC would have had them covered up and only their failed study out there in the public domain. These people are sneaky. No doubt and very sadly so. Why we must fight for three decades with a huge Federal health org to do the right thing is beyond me. I just don't understand but I do know that money, egos, and God knows what else is involved.

SO FOR THE CDC PEOPLE READING THESE POSTS: WE ARE WATCHING YOU. WE WILL NOT LOSE THIS TIME. I SUGGEST PLAYING IT STRAIGHT AND COMING CLEAN. THAT'S THE HONORABLE THING TO DO. AND IF THAT MEANS HANGING REEVES, STRAUSS, OTHERS OUT IN PUBLIC, THEN SO BE IT. WE WILL DO IT FOR YOU IF YOU DON'T DO IT YOURSELF.

I plan on calling the conference people and the NIH people about this workshop and demanding answers. If I have to call every single day, then so be it. Will post elsewhere and not on the now Threatened thread on the workshop. So much ado about nothing...What, we don't have minds to make our own decisions?

 

[usedtobeperkytina]

I would imagine that the conversation Switzer had with Alter a few months ago included questions on cohort.

And remember, the NHHS pulled the studies for them to work out the reason for differing results. Well, now you get the full explanation on the CDC site. They were studying a different kind of depression. It's the switcheroo. "Look there's Mikovits." Patient looks, "where?" And the CDC quickly changes CFS definition. "Oh, I was mistaken," says CDC. "Anyway, as I was saying, we have been studying CFS and this is what we determined...."


My little role playing script is scary to me because the reasoning of CDC is logical. It is believable. You can take the same facts and make them fit their theory just as well as others. Thing is, when all the people with XMRV are put in another category, their theories will seem even more likely, having eliminated all those virus folks who were "misdiagnosed."

The key, though, is for reporters to bring up the past, the days of clusters and inability of CDC to detect it, no matter what you want to call it. And, key is for future studies that look into whether their CFS patients have it is for them to use words "chronic fatigue syndrome" assuming they show high rate.

I have always thought that most people are not malicious. But, most are selfish. And they will con themselves and others into thinking their actions and words are of noblest intentions. Especially is this seen in institutions. Take politics. People start off wanting to make a positive difference. They tend to start in towns, districts, state, and then up to federal. But along the way, they become disconnected from citizens they serve. And they get their motives mixed up. They support or reject a bill, but is it because they want to be re-elected, keep their job, or is it because they think it serves the citizens best? Or is it because they want their party to win the next election? They might convince themselves that their motives are noble, but they may con themselves and thus con others.

Of course, same can be said of those of us on the other side of the CFS isle.

Tina

 

[BRCforME.org]

To beat the CDC, we need our own PR. Real PR.

 

[SOC]

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.

 

[Mya Symons]

To beat the CDC, we need our own PR. Real PR.

I know because we are all sick, we don't have a lot of money. But, would it be possible for us all to pool our money together and hire a lobbyist? That's how the big corporations deal with government to get things done.

 

[Sean]

Nice work, Tina.

Though I am not so sure the CDC are going to get away with blaming regular clinicians for misdiagnosing, seeing as those clinicians would have (mostly) been using the CDC's own definition (usually Fukuda), and generally relying on their advice. Can't be an expert and then pretend it had nothing to do with you when it all goes wrong, based on your advice.

 

[usedtobeperkytina]

Well, we do have some advocacy organizations who speak for us. (more than one). Could they alert the news media? Make a statement to bring attention to the switcheroo CDC has done?

We have Mindy and Amy. Surely there is someone, somewhere who is a reporter for major newspaper who is interested in this. More letters to 60 Minutes?

And, considering the SSA position, I do feel bad for those of us who end up not having this virus. As I have said before, there may be other viruses.

Tina

 

[SOC]

Can't be an expert and then pretend it had nothing to do with you when it all goes wrong, based on your advice.

Sure you can.

Change the website, write a couple of papers making it "obvious" which cohort you've "always" been talking about and brazen it through. It's not your fault if the clinicians misinterpreted what you said. [Another wide-eyed innocent CDC PR stare]

I think it will backfire on them if they try it, but at this point I won't be surprised if they do.

 

[Greggory Blundell]

Ummm, where is the CAA? Someone must pull them into this...

 

[RustyJ]

Ummm, where is the CAA? Someone must pull them into this...

It is the CAA who should have been on the ball enough to alert us to this issue in the first place. And yes they are our advocacy group. Do you have to be reminded? Do they have to be reminded?

 

[BRCforME.org]

The CAA only appears to be interested in what is free. They seem to have no inclination to put the money and elbow grease into using PR to make the government move.

 

[cfssufferer]

I emailed Elizabeth Unger several days ago, indirectly questioning the changes to the CDC website.

As Im sure you are all aware, she is the new head of the CFS department of the CDC (the person that replaced Reeves.) I thought her appointment would signify a new direction for CFS.

I assumed the changes on the CDC website were due to a contingency plan by the CDC if XMRV does turn out to be a major factor in CFS. As has been mentioned many times before in this thread, I think the CDC will claim they have been studying a different illness all along.

This is a quote from the Switzer XMRV paper that I believe alludes to the CDC preparing to play the different illness card:

The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients

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. I asked whether she believes these treatments http://cdc.gov/cfs/general/treatment/options.html are useful for those fulfilling the Canadian Consensus Criteria.

If she says yes then she is lumping all CFS cases together. If XMRV turns out to be the major player, the CDC wont be able to claim that the Canadian Consensus Criteria CFS is a different illness to CDC criteria CFS.

If she answers no then she is admitting that people satisfying the CCC dont apply to this article. Maybe I am being optimistic that a government official will give a yes or no answer or indeed answer the question at all but I thought it was worth giving it a try. I havent received a reply from her yet

If she does reply, I have some more questions I plan to ask her:
I have tested positive for the list of non CFS tests does this mean I dont have CFS?
The non-CFS treatments have improved my condition. Does this mean I dont have CFS?
The CFS treatments have made me worse. Does this mean I dont have CFS?


If anyone else is interested in writing an email to her, her email address is eunger@cdc.gov

This is the email I sent Unger

Dear Dr. Unger,

I am emailing you to seek clarification on an article on the CDC website regarding Treatment and Management Options for CFS: http://cdc.gov/cfs/general/treatment/options.html
My question is Do these treatment and management options for CFS apply to Canadian Consensus Criteria CFS or only CDC criteria CFS?

Thank you for taking the time to read my email and I am eagerly awaiting your response.
Kind Regards,