Re: Reviewing Cheney's heart info. Testing?? Question

[Guest guest]

I for one am not confusing 2 papers by Peckerman-because I have read neither of

them,lol. I am just following Cheney. I am more interested in his understanding

of the data than in the data itself. FWIW.

Seems to me there is really only a short distance between Cheney's thinking and

the bottom line; is there something based on all this that actually helps? For

example, I now have a pretty solid- and getting solider?- reason for doing what

I kind of thought would help all along: move to a lower altitude. (Also, just

found the resources to afford such a move.)

Adrienne

Re: Reviewing Cheney's heart info. Testing??

Question

Thats actually not true. If you look at the Peckerman 2003 paper both charts

for cardiac output and symptom expression and cardiac output while supine and

standing are measured in liters/minute. The supine/standing chart actually says

'Q' while the symptom one does not.

The 1999 study also measured cardiac output in liters per minute.

I think stroke volume and Q are the same. Both studies only used impedance

cardiography.

Another note on the 2003 study; yes exercise intolerance and fever/chills were

correlated with Q but look at all the things that have been associated with CFS

that were not; memory/concentration, swollen lymph nodes, 'weakness', joint

pain, unrefreshing sleep and sore throat. In fact the more severe CFS patients

had significantly better memory/concentration than the less severe CFS patients!

Very strange. It makes one wonder a bit about the whole symptom thing.

Cort and Adrienne,

I think y'all might be confusing the 2 Peckerman papers. Q is NOT stroke

volume (SV), it is a rate of flow measured in liters per minute. The

second Peckerman paper is what measured Q and found very high correlation

with symptom severity, (flu-like symptoms more than P-EM). Cheney is more

exited about the second paper than the first.

Tim

Y'all wrote,

" You might reflect on the fact that about half the CFS patients in that

study did not have any abnormaliies in stroke volume (Q). "

----------------------------------------------

But that's because they " had " CFS/ME by case definition, whereby

post-exertional malaise (P-EM) is only a minor and not a major criterion

for that diagnosis. That is, you can get the diagnosis without having the

exertion problem. The demonstration is only of correlation between P-EM

and Q value. "

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

---------------------------------

[Guest guest]

Good attention to detail Cort.

I think you may have me on that one. Dr. Cheney did not go into this

extensively with me, nor have I read about it in as detailed a manner

as you seem to have. (and I'm not about to do it, esp. today, as

sick as I am)

Dr. Cheney talked to other patients about the Starling curve

(Starking curve? sp?). I suspect the difference may have something

to do with that. In that (if my memory is correct) when the CHF

patient lies down, things can actually be worse on the heart, rather

than better (as one would expect). It is a delicate balancing act.

Perhaps, someone else, will jump in here and elaborate on that aspect

of things.

Thanks for the correction,

Zippy

======================================================

> > There seems to be some confusion about some of the info below.

> Here's

> > my take on the Key Points from part one (section 1A) of Dr.

> Cheney's

> > comments as reported by Carol - Cheney is commenting on the study

> > headed by Arnold Peckerman.

> >

> > My summary of key points:

> > 1) Q (cardiac output)correlated with level of disablility in CFIDS

> > 2) ALL DISABLED CFIDS patients have post exertional fatique & low

Q.

> > (Only 60% non-disabled & no FM patients have low Q/post-

exertional

> > fatigue. FM patients can exercise and feel better.)

> > 3) Dr. Cheney recommends using the Impedance Cardiography test to

> > measure Q - (NOT ANY OTHER TEST- see his comments)

> > 4) The test needs to be done standing (and if possible in 4

> positions)

> > 5) University of Minnesota algorithm has been approved by the FDA

> as

> > a valid measurement of Q. This algorithm must be used for the

test

> in

> > order to be valid.

> > 6) This is the ONLY TEST EVER that can measure level of

disability

> in

> > a PWC. This is significant & was the point of the study - to find

a

> > way to measure CFIDS disability. Funded by Nat'l Institutes of

> Health.

> > 7) Dr. Cheney's last sentence in this section is

significant: " More

> > importantly, all disabled CFIDS patients, all of whom have post-

> > exertional fatigue, have low " Q " and are in heart failure. "

> >

> > BELOW IS THE LINK FOR PART 1A OF DR. CHENEY'S COMMENTS IN CAROL'S

> > REPORT:

> >

>

http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.part1a.

> > htm

> >

> > HERE ARE EXCEPT FROM THE 1ST SECTION [1A]

> >

> > A " Q " Problem

> >

> > " Q " stands for cardiac output in liters per minute. " Q " in CFIDS

> > patients correlated—with great precision —with the level of

> > disability as judged by validated clinical questionnaires that

> asked

> > about activities of daily living.

> >

> > The Test: Impedance Cardiograph

> >

> > " Then they measured Q, using impedance cardiography. This

> technology

> > allows one to accurately measure the cardiac output using the

idea

> > that the resistance a current has, passed through your chest, is

a

> > function of the blood flow through it.

> >

> > The University of Minnesota algorithm has been approved by the

FDA

> as

> > a valid measurement of Q. The point is that Medicare pays for

this.

> > It's been clinically validated by a government agency and is not

> > considered experimental or research—as long as you use this

> > algorithm. That's important, because whenever this test result

> > filters back to a cardiologist, the first thing many say is,

well,

> > but, you know, that's not accurate. And indeed, it may not be

> > accurate, depending on the machine and the algorithm it uses.

> >

> > " By the way, there's one other important detail. Unlike all other

> > measures of cardiac output, this is the only one that can be done

> in

> > the upright position. Which, as you'll find out in a second, was

a

> > critical step. Absolutely critical. All other cardiac output

> > measurements are done in the supine position—laying down. " [To

> detect

> > the heart problem in CFS patients, it has to be done both lying

> down

> > and standing up. If you can manage the whole test, it's preferred

> to

> > take readings in four positions on a tilt table.]

> >

> > When [disabled CFIDS patients] stand up, [they're] on the edge of

> > organ failure due to low cardiac output. "

> >

> > When they looked at the test result statistics, disability

> correlated

> > with Q!

> >

> > P Value: " Q " Correlates with Degree of Disability

> >

> > ...those that were disabled was exactly proportional to the

> severity

> > of their " Q " defect—without exception, and with scientific

> precision

> > by virtue of their most disabling symptom, post-exertional

fatigue.

> > WOW. WOW! "

> >

> > Dr. Cheney continued, " And I'll tell you, it's profound because

no

> > other paper that I know of has been published in 20 years that

can

> > give a number which so precisely correlates with the level of

> > disability. There's nothing out there. Believe me—nothing exists.

> Not

> > RNase L, not immune-activation levels, not SED rates. NOTHING has

> > this sort of correlation with disability that I know of. "

> >

> > Post-Exertional Fatigue Indicates a " Q " Problem

> >

> > Next, the NJ team looked to see if there were any symptoms that

> were

> > 100% observable in the group of disabled cases, but not in the

> > others. They found that there was only one symptom (among the

> loooong

> > list of CFIDS symptoms) that was seen in 100% of the patients

with

> > the Q problem. Only one. Post-exertional fatigue. That is, when

you

> > push yourself physically, you get worse.

> >

> > What distinguishes CFIDS from FM? Post-exertional fatigue.

Patients

> > who have FM, but not CFIDS, can exercise—it helps them. FM

patients

> > do not have a Q problem. MCS patients do not have a Q problem.

> > [unless they also have CFIDS.] They do have other issues that

> overlap

> > with CFIDS. Pall's conceptual framework allows us to lump

> > these people all together (FM, MCS, GWS, CFIDS). However, Q is

what

> > separates them. CFIDS patients have a big Q problem, and post-

> > exertional fatigue is the one symptom that correlates with Q.

> >

> > Post-exertional fatigue is the number one symptom reported by

> people

> > with ICM (Idiopathic Cardiomyopathy). Though some symptoms were

> > certainly more common among the disabled patients, the symptoms

> > varied—with the exception of post-exertional fatigue. They all

had

> > that.

> >

> > ...ALL DISABLED PATIENTS HAVE THAT, and 60% of non-disabled have

> > that. "

> >

> > " More importantly, all disabled CFIDS patients, all of whom have

> post-

> > exertional fatigue, have low " Q " and are in heart failure. "

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>

>

> ---------------------------------

>

[Guest guest]

In Carols paper Cheney talks about increasing blood volume in the CFS patients

but he also talks about increasing it TOO much and stressing the heart.

Its kind of a strange situation; when you lie down you are getting more blood

pumped out by the heart - so your tissues are getting more 'perfusion' so thats

good. The test showed, however, that relative to controls CFS patients were

pumping less blood out when lying down than when standing. Peckerman believes

this means the heart is stressed or some other things could be happening.

So your heart is actually struggling more when you are supine but your body

overall is doing better! Bizarre.

bhp355 <zippy890@...> wrote:

Good attention to detail Cort.

I think you may have me on that one. Dr. Cheney did not go into this

extensively with me, nor have I read about it in as detailed a manner

as you seem to have. (and I'm not about to do it, esp. today, as

sick as I am)

Dr. Cheney talked to other patients about the Starling curve

(Starking curve? sp?). I suspect the difference may have something

to do with that. In that (if my memory is correct) when the CHF

patient lies down, things can actually be worse on the heart, rather

than better (as one would expect). It is a delicate balancing act.

Perhaps, someone else, will jump in here and elaborate on that aspect

of things.

Thanks for the correction,

Zippy

======================================================

> > There seems to be some confusion about some of the info below.

> Here's

> > my take on the Key Points from part one (section 1A) of Dr.

> Cheney's

> > comments as reported by Carol - Cheney is commenting on the study

> > headed by Arnold Peckerman.

> >

> > My summary of key points:

> > 1) Q (cardiac output)correlated with level of disablility in CFIDS

> > 2) ALL DISABLED CFIDS patients have post exertional fatique & low

Q.

> > (Only 60% non-disabled & no FM patients have low Q/post-

exertional

> > fatigue. FM patients can exercise and feel better.)

> > 3) Dr. Cheney recommends using the Impedance Cardiography test to

> > measure Q - (NOT ANY OTHER TEST- see his comments)

> > 4) The test needs to be done standing (and if possible in 4

> positions)

> > 5) University of Minnesota algorithm has been approved by the FDA

> as

> > a valid measurement of Q. This algorithm must be used for the

test

> in

> > order to be valid.

> > 6) This is the ONLY TEST EVER that can measure level of

disability

> in

> > a PWC. This is significant & was the point of the study - to find

a

> > way to measure CFIDS disability. Funded by Nat'l Institutes of

> Health.

> > 7) Dr. Cheney's last sentence in this section is

significant: " More

> > importantly, all disabled CFIDS patients, all of whom have post-

> > exertional fatigue, have low " Q " and are in heart failure. "

> >

> > BELOW IS THE LINK FOR PART 1A OF DR. CHENEY'S COMMENTS IN CAROL'S

> > REPORT:

> >

>

http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.part1a.

> > htm

> >

> > HERE ARE EXCEPT FROM THE 1ST SECTION [1A]

> >

> > A " Q " Problem

> >

> > " Q " stands for cardiac output in liters per minute. " Q " in CFIDS

> > patients correlated—with great precision —with the level of

> > disability as judged by validated clinical questionnaires that

> asked

> > about activities of daily living.

> >

> > The Test: Impedance Cardiograph

> >

> > " Then they measured Q, using impedance cardiography. This

> technology

> > allows one to accurately measure the cardiac output using the

idea

> > that the resistance a current has, passed through your chest, is

a

> > function of the blood flow through it.

> >

> > The University of Minnesota algorithm has been approved by the

FDA

> as

> > a valid measurement of Q. The point is that Medicare pays for

this.

> > It's been clinically validated by a government agency and is not

> > considered experimental or research—as long as you use this

> > algorithm. That's important, because whenever this test result

> > filters back to a cardiologist, the first thing many say is,

well,

> > but, you know, that's not accurate. And indeed, it may not be

> > accurate, depending on the machine and the algorithm it uses.

> >

> > " By the way, there's one other important detail. Unlike all other

> > measures of cardiac output, this is the only one that can be done

> in

> > the upright position. Which, as you'll find out in a second, was

a

> > critical step. Absolutely critical. All other cardiac output

> > measurements are done in the supine position—laying down. " [To

> detect

> > the heart problem in CFS patients, it has to be done both lying

> down

> > and standing up. If you can manage the whole test, it's preferred

> to

> > take readings in four positions on a tilt table.]

> >

> > When [disabled CFIDS patients] stand up, [they're] on the edge of

> > organ failure due to low cardiac output. "

> >

> > When they looked at the test result statistics, disability

> correlated

> > with Q!

> >

> > P Value: " Q " Correlates with Degree of Disability

> >

> > ...those that were disabled was exactly proportional to the

> severity

> > of their " Q " defect—without exception, and with scientific

> precision

> > by virtue of their most disabling symptom, post-exertional

fatigue.

> > WOW. WOW! "

> >

> > Dr. Cheney continued, " And I'll tell you, it's profound because

no

> > other paper that I know of has been published in 20 years that

can

> > give a number which so precisely correlates with the level of

> > disability. There's nothing out there. Believe me—nothing exists.

> Not

> > RNase L, not immune-activation levels, not SED rates. NOTHING has

> > this sort of correlation with disability that I know of. "

> >

> > Post-Exertional Fatigue Indicates a " Q " Problem

> >

> > Next, the NJ team looked to see if there were any symptoms that

> were

> > 100% observable in the group of disabled cases, but not in the

> > others. They found that there was only one symptom (among the

> loooong

> > list of CFIDS symptoms) that was seen in 100% of the patients

with

> > the Q problem. Only one. Post-exertional fatigue. That is, when

you

> > push yourself physically, you get worse.

> >

> > What distinguishes CFIDS from FM? Post-exertional fatigue.

Patients

> > who have FM, but not CFIDS, can exercise—it helps them. FM

patients

> > do not have a Q problem. MCS patients do not have a Q problem.

> > [unless they also have CFIDS.] They do have other issues that

> overlap

> > with CFIDS. Pall's conceptual framework allows us to lump

> > these people all together (FM, MCS, GWS, CFIDS). However, Q is

what

> > separates them. CFIDS patients have a big Q problem, and post-

> > exertional fatigue is the one symptom that correlates with Q.

> >

> > Post-exertional fatigue is the number one symptom reported by

> people

> > with ICM (Idiopathic Cardiomyopathy). Though some symptoms were

> > certainly more common among the disabled patients, the symptoms

> > varied—with the exception of post-exertional fatigue. They all

had

> > that.

> >

> > ...ALL DISABLED PATIENTS HAVE THAT, and 60% of non-disabled have

> > that. "

> >

> > " More importantly, all disabled CFIDS patients, all of whom have

> post-

> > exertional fatigue, have low " Q " and are in heart failure. "

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>

>

> ---------------------------------

>