Centers for Disease Control (CDC) Obfuscation

[Andrew]

The following brief list covers my impression of how the CDC manages website criticism. It is not simply about what I saw at the latest CFSAC meeting. It is about comments from the CDC over the past few years, with only some of them being from Dr. Unger. And because I saw Dr. Unger using the same kind of obfuscation Dr. Reeves used, I am not waiting to see what happens next.

Here is the pattern of obfuscation (aka double-talk) I have seen:

1. They defend their lack of a representative cross section of research by saying the site is only reports CDC research. This is simply not true. For example, they cite outside studies that support the idea the graded exercise is helpful, while ignoring research that shows the opposite. This is a purposeful bias that has zero relationship to the stated policy of presenting CDC-only research.

2. When their empirical definition of CFS is criticized, they say it is not meant for clinical use. But they include it in the information for clinicians.

3. They say the advice to not give certain tests is aimed at researchers. Yet they include it in the information for clinicians.

4. They say their information is research-based. But instead of presenting the research, they offer it as conclusions. And then fail to mention it is not based on a review of all research.

5. They selectively attend to research that implies a psychiatric cause, and selectively ignore research that implies a physiological cause. And then defend this by saying this is what their research shows. But again, this is not true. They pull research from outside of the CDC to accomplish this, while ignoring other research.

If this is really a site about CDC research, they should remove everything that is not CDC research. They should limit the website to news updates that offer an explanation of CDC research including the abstract. And they should clearly state in a very visible way that the research on the site is limited to CDC research, and that not all research supports their findings. Also, they should refrain from giving advice to clinicians or researchers. They are not in a position to do this, considering their repeated statements that they are not responsible for being comprehensive.

OTOH, if they do see it as their place to offer advice, then they need to start doing this at a professional level which would be to base their information on what all the research shows, and not only that research that agrees their internal point of view.

 

[Carrigon]

In 1991, when I got sick, my mother called the CDC right in front of me. She was told CFIDS is a VIRUS and that it is WORSE than AIDS. It is amazing how the CDC's tune has changed so much in all these years.

 

[alex3619]

Hi Andrew, and now for a comparison, with the biopsychosocial school.

1. They use a definition of CFS (Oxford) which is not the internationally recognized standard, and then present it as the standard in some contexts, deliberately confusing the two.

2. In the PACE trial they use ME as a comparison group, but selected a minor definition and then modified it heavily before using it ... but then claim they tested CBT/GET on ME patients.

3. In the PACE trial they compared against a form of pacing. However, they took pacing which is probably the single most highly regarded treatment for ME (at least by patients), created its logical opposite which can be inferred to probably have the opposite result, and called it Adaptive Pacing. They then found that CBT/GET works better than Adaptive Pacing - what a surprise! CBT/GET works better than the form of pacing which is likely to make patients worse.

4. They call their psychotherapy CBT, but classic CBT is aimed at improving coping, its not aimed at cure or reversing illness. So even their CBT is not CBT.

5. In the PACE trials they used a 6 minute walking test to evaluate capacity. It is known to be inadequate for CFS and ME. However, they did have a good test for entering the study, an actometer. They then abandoned this part way .... is it a coincidence that every study using an actometer found either no improvement or a worsening of functional capacity using CBT/GET?

6. I could be wrong about this, but my understanding of the PACE trials leads to the following scenario being possible: You are a twenty year old CFS patient who enters the study qualifying as disabled. You get worse. You leave the study qualifying as restored to normative function - because you can match the walking capacity of an 80 year old. However you are still disabled, though classed as "normal" if you use only a statistical measure that is not validated.

7. They say that CBT/GET is the most effective treatment, yet results from immunotherapy (antivirals, immune modulators) seems to be around an order of magnitude better. You can get a rough measure of this by multiplying the number of patients who respond by the response size - usually about an order of magnitude better, including for ampligen, Rituximab and antivirals. So their claim that CBT/GET is the only proven effective treatment is both wrong and relies on ignoring the evidence.

There is deliberate use of multiple definitions of things without sufficient clarification. They rely on doctors not having time or resources to check definitions, which makes this either deliberately misleading or misleading by virtue of a systemic failure of the medical profession globally, or both. If it were one paper this would just be an oversight, but its a pattern across most of the research on this area. So you can't target any individual paper and show evidence that this is happening, but the probability grows with the number of papers, and the hyperbolic press statements also show this. Their defence is that they have stated (in the source research) exactly what they did, even if its only mentioned online in the publishers addendum and not the paper, so if the docs or whoever don't understand thats to be expected as they are not experts. "Leave it to the experts" would seem to be their message, but they are self proclaimed experts who ignore most of the data and research, or dismiss it.

I am moving to the position that the entire psychosomatic movement is pseudoscience, and the few mental illnesses (probably neurological though) that they are grounded on are something else entirely.

Bye
Alex

 

[Glynis Steele]

I am moving to the position that the entire psychosomatic movement is pseudoscience, and the few mental illnesses (probably neurological though) that they are grounded on are something else entirely

Yes x million! And they will fight to the death to keep them so, as they all lose their jobs if mental illnesses were proved to be organic, treatable conditions.

 

[markmc20001]

Excessive plausible deniablity.

When congress or the heat gets too severe, they decide to go ahead and run a five or ten year study to passify congress or whoever....

 

[justinreilly]

Andrew, I agree. CDC is barely changed from Reeves days. In fact Unger is overseeing three Reeves Criteria studies! Nuff said.

 

[taniaaust1]

In 1991, when I got sick, my mother called the CDC right in front of me. She was told CFIDS is a VIRUS and that it is WORSE than AIDS. It is amazing how the CDC's tune has changed so much in all these years.

I dont think they at all have changed tune. They have said all along ME and CFS are different illnesses and still do. I assume when they spoke to your mother that they indentified CFIDS not with CFS but rather with ME.

It is no good us knocking their studies as they are CFS ones and not ME ones. We need to be calling for ME studies which the indentify separately. We need to say seeing they say they are separate things, we want ME defination to be put clearly up on their website. Legally they will never be in the wrong for bias or anything else as they say they are separate illnesses and can wiggle out of any harm done by a ME person following their CFS advice. Till they are pulled up on this and forced into putting up the ME defination, we wont have a leg to stand on.

 

[Andrew]

CFS is the term that was invented specifically to describe the greater Tahoe area cluster. If their CFS definition does not accurately describe that cluster, it doesn't make the sick people wrong. It makes the definition wrong, along with all the research that uses that definition.

 

[taniaaust1]

CFS is the term that was invented specifically to describe the greater Tahoe area cluster. It their CFS definition does not accurately describe that cluster, it doesn't make the sick people wrong. It makes the definition wrong, along with all the research that uses that definition.

A question we need to be asking the CDC is WHY wasnt that outbreak classified as a ME one? Why didnt they think it was ME?

They once offered to ring me to clarify it all but I was too sick for phone calls. Maybe another who is okay on phones can get on their back and start asking the questions I was asking them and they were going to respond too.

Unfortunately they didnt put their answers in writting to me and just told me they'd call me to answer them, said they'd answer my questions on how ME was different to CFS etc and what the ME defination was if I gave them my phone number.

The day the CDC starts being genuine in really wanting to help is is the day they start being willing to answer peoples questions on all this in writing (rather then telling them in a phone call). Till then.. they can go on and be telling us anything.

 

[usedtobeperkytina]

Andrew, have you shared this with Dane Cook or Eileen Holderman, who are on the CFSAC and in the group advising CDC on website. Some of your points were mentioned by Cook in CFSAC.

This is his email address I found on a study: dcook@education.wisc.edu.

He spoke about the inconsistencies. Your points might help him as they are continuing to submit recommendations to the CDC.

Tina

 

[Andrew]

I already emailed a shorter custom version to Dan Cook. But I was unable to find contact information for Eileen Holderman. If you can find it an PM it to me I'd appreciate it.

BWT, who is reviewing the treatment information. I have some ideas about that too.

 

[usedtobeperkytina]

Don't

Don't know who is doing what part. I assumed all were doing all of it.

Tina

 

[Andrew]

If anyone can tell me how to contact Eileen Holderman, let me know. I saw some things I needed to point out to her. For example, she said that when she questioned them about the child abuse study, they said there are more. I went to pub med, and it took me 5 seconds to find one that said there is no connection. I also found a studies for positive correlation between child abuse and adult heart disease, also with cancer. And so what. What does any of this prove. Because the fact remains, the CDC stacks the deck in the way they present information.

 

[fla]

This is what occupy wall street was about. Those with money can buy government and government agencies to work for their agenda instead of for the people. The CDC is no exception.

 

[biophile]

As far as I know, there are no convincing studies to support the alleged causal role of child abuse/trauma and adult CFS. Studies cited to support such claims are either retrospective and/or did not use patients medically diagnosed with CFS and/or used dubious CDC 2005 criteria. Anyone who dismisses these methodological concerns as unimportant tend to be psychobabblers and cannot be trusted on the issue. And yes, even if there was some genuine association, so what? The CDC are being disingenuous about it just like they were with the dubious statements made in their personality study.

 

[taniaaust1]

It is no good us knocking their studies as they are CFS ones and not ME ones. We need to be calling for ME studies which the indentify separately. We need to say seeing they say they are separate things, we want ME defination to be put clearly up on their website. Legally they will never be in the wrong for bias or anything else as they say they are separate illnesses and can wiggle out of any harm done by a ME person following their CFS advice. Till they are pulled up on this and forced into putting up the ME defination, we wont have a leg to stand on.

Does anyone know of the link for the CDC site info which points out what I was saying above about the ME and CFS being different illnesses? I cant find it now and need it for something.i

Has that recently been removed from their site?

 

[biophile]

taniaaust1 wrote: Does anyone know of the link for the CDC site info which points out what I was saying above about the ME and CFS being different illnesses? I cant find it now and need it for something. Has that recently been removed from their site?

I had a look at an outdated URL I previously noted down. The text in question still exists on the website but under two different pages with slightly different text:

"Various terms are often used interchangeably with CFS. CFS is the preferred term because it 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 does not currently exist. Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare. However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. 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." - Course 3151: A Primer for Allied Health Professionals (http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html)

"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." - Course 1032: Diagnosis and Management (http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html)

Also consider Peter White's position which may be similar to the CDC's general position on the subject in practice, in the abstract of a 2008 presentation on CFS he states: "ME was originally defined on the basis of several epidemics, and was clearly a different illness to CFS, as originally proposed. ME is now generally used as a colloquialism for CFS. However, some still regard ME as an incurable 'organic' neurological disease, with a consequent negative effect on prognosis." (http://www.rsm.ac.uk/chronicfatigue08/abs.pdf)

 

[Andrew]

Thing is, people in the Tahoe cluster were showing neurological symptoms.

http://www.annals.org/content/116/2/103.short

 

[usedtobeperkytina]

That's the point, Andrew. They made up CFS and different criteria but that doesn't make it a different disease. The disease of the U.S. outbreaks, the one labeled CFS, is the same disease of Royal Free Hospital in the UK. We need to eliminate CFS and the Fukuda criteria. I agree Andrew, CFS, as studies show, has neurological and muscular signs. It is ME.

 

[Andrew]

Looking at this historically, here's how this problem came about: When the CDC investigated Tahoe, they only did a superficial evaluation. The senior investigator dropped out of the project, leaving only the junior one (Holmes). Holmes decided that it was "cleaner" to only examine patients who were not showing symptoms that he associated with other illnesses. He believed this would give him a purer sample. I think we can all see the problem with this. It's like refusing to look at AIDS patients who have cancer or pneumonia, or symptom patterns associated similar illnesses. And so they stacked the deck. They created an illness definition that is so watered down it does not describe the illness. And now instead of fixing the mistake they made, they just claim it's a different illness from the illness the patients actually have.