Re: Check the CDC on testing (if you thought the name pissed you off)

July 11, 2006

Pissed off about the name of which, Bob, the name " chronic fatigue

syndrone " or the name " Centers for Disease Control and Prevention " ?

Tut-tut.

In my not-so-humble opinion, you're just discovering that the CDC is

nothing but another three-letter extension of the federal

government. Certainly not operating to help peoples' health, as the

name might suggest, but more interested in protecting and managing

their own image and ability to funnel money.

The CDC is about the last place I'd look for any helpful or useful

information about this batch of illnesses -- or any others, for that

matter.

But that is, ahem, politics, and we don't discuss politics here.

Good luck getting well, Bob.

in Champaign IL

>

> From

>

> http://www.cdc.gov/cfs/cfsdefinitionHCP.htm#conditions_exclude

[...]

> So in other words, just IGNORE EVERYTHING coming out of the

scientific

> community. These people are beneath contempt. This is murder in

slow

> motion.

>

> This is their *awarenes* campaign? Sheesh!

>

> - Bob Niederman

>

July 12, 2006

Bob,

I suspect that this rule of diagnosis along with the name and the

symptoms offered by the CDC was probably influenced by the insurance

industry's desire to delay and/or withhold compensation. It is the

only thing that makes sense. Now, some people have said that this

isn't so. Well, until one can show me evidence that this isn't so, I

will continue to consider it a very very real possibility. The

unfortunate reality is is that industry continues to exert power and

influence in the decisions made by government agencies - usually in

favor of the corporate profit margins over the health and well being

of its country's citizenry.

From Denial, Ignorance, and Apathy to Acceptance, Awareness, and

Action.

paul

>

> From

>

> http://www.cdc.gov/cfs/cfsdefinitionHCP.htm#conditions_exclude

>

> "

> The use of tests to diagnose CFS (as opposed to excluding other

diagnostic

> possibilities) should be done only in the setting of protocol-based

> research. .....

>

> In clinical practice, no tests can be recommended for the specific

purpose

> of diagnosing chronic fatigue syndrome. Tests should be directed

toward

> confirming or excluding other possible clinical conditions.

Examples of

> specific tests that do not confirm or exclude the diagnosis of

chronic

> fatigue syndrome include serologic tests for Epstein-Barr virus,

> enteroviruses, retroviruses, human herpesvirus 6, and Candida

albicans;

> tests of immunologic function, including cell population and

function

> studies; and imaging studies, including magnetic resonance imaging

scans and

> radionuclide scans (such as single-photon emission computed

tomography and

> positron emission tomography).

>

> "

>

> So in other words, just IGNORE EVERYTHING coming out of the

scientific

> community. These people are beneath contempt. This is murder in

slow

> motion.

>

> This is their *awarenes* campaign? Sheesh!

>

> - Bob Niederman

>

July 12, 2006

It is a theory that explains the facts. It is otherwise impossible to

understand this level of ignorance, given the science that is out there.

- Bob Niederman

On 7/12/06, Doyon <prd34@...> wrote:

>

> Bob,

>

> I suspect that this rule of diagnosis along with the name and the

> symptoms offered by the CDC was probably influenced by the insurance

> industry's desire to delay and/or withhold compensation. It is the

> only thing that makes sense.

>

July 12, 2006

Just what test did you have in mind? The only things that come to mind that have

been consistently seen in CFS are RNase L fragmentation and NK cell dysfunction.

Even with regard to NK cell dysfunction - a recent study indicated that a subset

of CFS does and does not have NK cell dysfunction. De Meirleir had indicated

that certain subsets of CFS patients do not have RNase L fragmentation. We know

that some CFS patients have increased EBV levels, some have increased HHV-6

levels, some have increased cytokine levels and some dont have any of that. So

what tests are you suggesting the CDC implement in their diagnostic protocols?

This is a question of diagnosis - that is entirely different from a doctor doing

tests on a patient to determine whats wrong with them - In that case all those

tests are applicable but if you're trying to differentiate CFS patients from all

others, all of them fail at some point.

bob niederman <bobn1955@...> wrote: From

http://www.cdc.gov/cfs/cfsdefinitionHCP.htm#conditions_exclude

"

The use of tests to diagnose CFS (as opposed to excluding other diagnostic

possibilities) should be done only in the setting of protocol-based

research. .....

In clinical practice, no tests can be recommended for the specific purpose

of diagnosing chronic fatigue syndrome. Tests should be directed toward

confirming or excluding other possible clinical conditions. Examples of

specific tests that do not confirm or exclude the diagnosis of chronic

fatigue syndrome include serologic tests for Epstein-Barr virus,

enteroviruses, retroviruses, human herpesvirus 6, and Candida albicans;

tests of immunologic function, including cell population and function

studies; and imaging studies, including magnetic resonance imaging scans and

radionuclide scans (such as single-photon emission computed tomography and

positron emission tomography).

"

So in other words, just IGNORE EVERYTHING coming out of the scientific

community. These people are beneath contempt. This is murder in slow

motion.

This is their *awarenes* campaign? Sheesh!

- Bob Niederman

July 12, 2006

If you run the right tests using the right methods for mycoplasma and

borrelia you find high percentages of the cfs and fms population

infected. This is not to say all, but some percents have been as high

as 90% and as low as 40% - both of which are significant.

a

> Just what test did you have in mind? The only things that come to

mind that have been consistently seen in CFS are RNase L

fragmentation and NK cell dysfunction. Even with regard to NK cell

dysfunction - a recent study indicated that a subset of CFS does and

does not have NK cell dysfunction. De Meirleir had indicated that

certain subsets of CFS patients do not have RNase L fragmentation.

We know that some CFS patients have increased EBV levels, some have

increased HHV-6 levels, some have increased cytokine levels and some

dont have any of that. So what tests are you suggesting the CDC

implement in their diagnostic protocols? This is a question of

diagnosis - that is entirely different from a doctor doing tests on a

patient to determine whats wrong with them - In that case all those

tests are applicable but if you're trying to differentiate CFS

patients from all others, all of them fail at some point.

>

July 13, 2006

How about *any* one of the ones you list? Most normal, healthy folks don't

have RnaseL-KDa37, or active HHV6 or active EBV or active CMV or the

mycoplasms or the borrelia - so why not test for all if any are positive,

plus you have the long-running debilitating fatigue, you say this person has

CFS - or if you prefer, CFSa or CFSb or CFSc, etc. - once again, we need

subtypes. Or you say this patient is sick - it's not in his head. The

science has found many things that are assiociated with subtypes of CFS -

test for those things.

The CDC's method of diagnosis *only* by exclusion is a way *not* to find

disease or to delay diagnosis as long as possible. It is the method of

people who still don;t believe this is real, even as they run an " awareness "

campaign.

See https://listserv.surfnet.nl/scripts/wa.exe?A2=ind0006D & L=me-net & P=R1531

" The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach by

R. Cheney, MD, PhD and W. Lapp, MD, FAAP "

And that is from 2001 - lots more science now.

- Bob Niederman

On 7/12/06, cort johnson <cortttt@...> wrote:

>

> Just what test did you have in mind? The only things that come to mind

> that have been consistently seen in CFS are RNase L fragmentation and NK

> cell dysfunction. Even with regard to NK cell dysfunction - a recent study

> indicated that a subset of CFS does and does not have NK cell dysfunction.

> De Meirleir had indicated that certain subsets of CFS patients do not have

> RNase L fragmentation. We know that some CFS patients have increased EBV

> levels, some have increased HHV-6 levels, some have increased cytokine

> levels and some dont have any of that. So what tests are you suggesting the

> CDC implement in their diagnostic protocols? This is a question of diagnosis

> - that is entirely different from a doctor doing tests on a patient to

> determine whats wrong with them - In that case all those tests are

> applicable but if you're trying to differentiate CFS patients from all

> others, all of them fail at some point.

>

> bob niederman <bobn1955@... <bobn1955%40gmail.com>> wrote: From

>

> http://www.cdc.gov/cfs/cfsdefinitionHCP.htm#conditions_exclude

>

> "

> The use of tests to diagnose CFS (as opposed to excluding other diagnostic

> possibilities) should be done only in the setting of protocol-based

> research. .....

>

> In clinical practice, no tests can be recommended for the specific purpose

> of diagnosing chronic fatigue syndrome. Tests should be directed toward

> confirming or excluding other possible clinical conditions. Examples of

> specific tests that do not confirm or exclude the diagnosis of chronic

> fatigue syndrome include serologic tests for Epstein-Barr virus,

> enteroviruses, retroviruses, human herpesvirus 6, and Candida albicans;

> tests of immunologic function, including cell population and function

> studies; and imaging studies, including magnetic resonance imaging scans

> and

> radionuclide scans (such as single-photon emission computed tomography and

> positron emission tomography).

>

> "

>

> So in other words, just IGNORE EVERYTHING coming out of the scientific

> community. These people are beneath contempt. This is murder in slow

> motion.

>

> This is their *awarenes* campaign? Sheesh!

>

> - Bob Niederman

>

July 14, 2006

Thats a good point. You could do that but then again the CDC definiition is not

really for clinical purposes; its was not at least so far as I understood

really not designed for the physician to use to diagnose CFS - its designed to

produce a baseline for research studies. It would be probably be prohibitively

expensive for a research study to study all the 'maybe's' in CFS in order to

produce a sample set and it might not work so well anyway. High antibodies to

EBV have been found in people with no apparent signs of disease. The testing for

HHV-6(A) is really a bit of a mess with differing opinions on what means what.

From what I've heard the expense of the RNase L fragmentation test is very high.

The CDC and NIH have let us down though on research into RNase L, however. The

actin test developed by De Meirleir seems like a real possiblity but the CDC and

NIH have let us down there too.

You can see the problems with Cheney's and Lapp's statement that the following

are present MORE OR LESS present in every patient DURING THE COURSE of his or

her disease; T cell activation, discrete immune defects, viral activation or

reactivation,

exerciserelated dysfunction, and evidence of brain dysfunction or

injury. i.e. they're saying they are sometimes present at some point in every

CFS patient; Thats not a lot to hang your hat on and its far from being anything

close to a definitve test. Do all of them need to be present or just some?

These are things that physicians should know though and I do agree t hat the

CDC does very poorly explaining CFS to physicians. Their advice to physcians

contains none of the possbilities present in CFS; nothing on T-cell activation,

brain scan abnormalities, Rnase L, other immune defects, not even

hypocortisolism or NK cell dysfunction. They have for some reason not included

any of the major developments/findings in CFS that may or may apply to each CFS

patients, thus they've done away with alot of the richness of the CFS

literature. Its a very poor introduction to CFS for a physician.

Its just idiotic to say, however, that CDC is doing this to delay a CFS

diagnosis. WhaThere is not grand conspiracy focused on making CFS patients

suffer - as some CFS patients like to think; there are differences of opinion

-each with lots of facts on its side - across a huge medical field. The primary

problem with CFS research is not that 'they're all against us' but that CFS is a

very complex and mysterious disease that has not, thus far, been particularly

amenable to study. That is my opinion, anyway. Its not so sexy or exciting but

thats my conclusion.

bra The medical evidence cited

for CFS asserts that the following are present more or less in every

patient during the course of his or her disease: Tcell activation,

discrete immune defects, viral activation or reactivation,

exerciserelated dysfunction, and evidence of brain dysfunction or

injury. While none of these tests can stand alone to " diagnose " the

illness, an array of these tests can be used to support this

diagnosis, given the proper clinical context derived through the

application of the CDC case definition. The use of nonspecific

tests to defend or support a diagnosis is a timehonored tradition in

medicine, and the concept is used to diagnose such disorders as

multiple sclerosis, lupus erythematosus, acute infectious

mononucleosis, and even AIDS. There are a number of criticisms

given for using nonspecific tests in the diagnosis of CFS. They

include the following:

(1) We lack a gold standard for determining this disorder and

therefore lack a means to test the relative value of certain tests

(i.e., false positive and false negative rates).

This is certainly a valid point in confirming a diagnostic test,

but it is not a valid criticism in using a nonspecific test to

support a clinical impression. If a test abnormality has been shown

in the medical literature to be associated with a certain disease,

such as a positive ANA in lupus, then it is valid test to be used in

supporting a clinical diagnosis. Furthermore, as in the " diagnostic "

tests for the hepatitis C virus and the Lyme agent, poor test

performance may be ignored in the case where benefits, however

defined, outweigh poor performance.

(2) Even if there are test abnormalities which can be associated

with CFS there is no need to make a more definitive diagnosis because

there is no treatment for the disease.

If this were a valid argument, then it would also apply to

multiple sclerosis, many cancers, acute infectious mononucleosis, and

even AIDS. Documentation of an illness by objective criteria is

important not only to confirm the diagnosis, but also to reassure the

patient about other disorders they may or may not have. Reassurance

is itself therapeutic and proportional to the degree of objective

support found for a diagnosis.

bob niederman <bobn1955@...> wrote:

How about *any* one of the ones you list? Most normal, healthy folks

don't