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

[Guest guest]

Hi Adrienne:

Yes, it's useful for disability, I believe a lot of his practice is

helping people get disability.

I decided to go there after reading the material Carol posted, and of

course I haven't spoken to Cheney yet.

He is giving a talk on June 18th in Dallas that will be on this

subject and I think you can buy a video or whatever from Carol's

website if you want to know more.

I am getting tested in order to confirm my suspicions and getting in

line for whatever treatment might be available in time for this

condition, because I am tired of living like a turnip.

Helen

> Finally able to settle into the Cheney materials we received

recently from Carol; he is saying there is a clearcut correlation

between the Q value and the degree of disability for people who get

sicker from exertion. Period.(I am one of those people. I am

seriously thinking of moving to a lower altitude.)

>

> So close a correlation that if you have the post-exertional

malaise, you have a heart problem was his statement. Therefore, why

would we need to get tested???

> Unless Cheney is not entirely confident in the study and wants more

data to accumulate?

>

> To " prove " it to some doc we are seeing?

>

> I can see that it certainly would help if you are trying to get on

disability.

>

> Any ideas? At least one person said they were going to Cheney to

get tested; did he tell you why to do it?

>

> Thanks,

> Adrienne

>

>

[Guest guest]

Hi:

I would think any dr giving such an important observation concerning ones health

would always want data to back up what he has discovered. clearly that's why one

sees all of the references in medical journals. sadly the FDA, Soc Sec, etc only

look at test results NOT hearsay. Besides isn't most of the medical field more

interested in facts than just what you say?

If I have a problem I like to have a clear answer to it and I would think that

most persons would even if there is no remedy at that time. at least then one

would know what to search for a remedy.

Dr Cheney has gone through a lot of persecution in the medical field for what he

has discovered and yet he has stood by the CFIDS/ME patient. it would only be

natural that he would want data to back up what he has learned.

just my opinions/thoughts,

n.

Reviewing Cheney's heart info. Testing?? Question

Finally able to settle into the Cheney materials we received recently from

Carol; he is saying there is a clearcut correlation between the Q value and the

degree of disability for people who get sicker from exertion. Period.(I am one

of those people. I am seriously thinking of moving to a lower altitude.)

So close a correlation that if you have the post-exertional malaise, you have

a heart problem was his statement. Therefore, why would we need to get tested???

Unless Cheney is not entirely confident in the study and wants more data to

accumulate?

To " prove " it to some doc we are seeing?

I can see that it certainly would help if you are trying to get on disability.

Any ideas? At least one person said they were going to Cheney to get tested;

did he tell you why to do it?

Thanks,

Adrienne

[Guest guest]

> Reviewing Cheney's heart info.

Testing?? Question

>

>

> Finally able to settle into the Cheney materials we received

recently from Carol; he is saying there is a clearcut correlation

between the Q value and the degree of disability for people who get

sicker from exertion. Period.(I am one of those people. I am

seriously thinking of moving to a lower altitude.)

>

> So close a correlation that if you have the post-exertional

malaise, you have a heart problem was his statement. Therefore, why

would we need to get tested???

> Unless Cheney is not entirely confident in the study and wants

more data to accumulate?

>

> To " prove " it to some doc we are seeing?

>

You may have a " Q " problem but that is not a clear indicator that

the heart is the problem. There are a number of factors that

influence cardiac output, blood flow or " Q " . I'm writing an article

that I hope will give people a better understanding of " Q " . When

you see some of the influencing factors that affect " Q " you will

better understand why " Q " is low. It may not neccessarily be a

problem with the heart. (although for some people heart problem is a

possibility, however, I suspect that the majority of people with

CFS-FMS do not have heart problems, but they do have " Q " problems.)

All the best,

Jim

[Guest guest]

Please note that despite whatever Cheney said about heart failure that Peckerman

said the findings in the severe CFS patients were on the low end of normal -

therefore they probably wouldn't help with disability.

helen9jora <helen9jora@...> wrote:Hi Adrienne:

Yes, it's useful for disability, I believe a lot of his practice is

helping people get disability.

I decided to go there after reading the material Carol posted, and of

course I haven't spoken to Cheney yet.

He is giving a talk on June 18th in Dallas that will be on this

subject and I think you can buy a video or whatever from Carol's

website if you want to know more.

I am getting tested in order to confirm my suspicions and getting in

line for whatever treatment might be available in time for this

condition, because I am tired of living like a turnip.

Helen

> Finally able to settle into the Cheney materials we received

recently from Carol; he is saying there is a clearcut correlation

between the Q value and the degree of disability for people who get

sicker from exertion. Period.(I am one of those people. I am

seriously thinking of moving to a lower altitude.)

>

> So close a correlation that if you have the post-exertional

malaise, you have a heart problem was his statement. Therefore, why

would we need to get tested???

> Unless Cheney is not entirely confident in the study and wants more

data to accumulate?

>

> To " prove " it to some doc we are seeing?

>

> I can see that it certainly would help if you are trying to get on

disability.

>

> Any ideas? At least one person said they were going to Cheney to

get tested; did he tell you why to do it?

>

> Thanks,

> Adrienne

>

>

[Guest guest]

But " Q " is a measure of the heart's functionality at a given moment in time. The

correlation is between Q and disability. So, ok, if you are disabled in terms of

exertion, you have a Q problem. Unless the research is not adequate or

incorrect, degree of disability reveals Q problem. What is the point then in

measuring (testing) your Q.? THAT is the question I am asking.

Adrienne

Reviewing Cheney's heart info.

Testing?? Question

>

>

> Finally able to settle into the Cheney materials we received

recently from Carol; he is saying there is a clearcut correlation

between the Q value and the degree of disability for people who get

sicker from exertion. Period.(I am one of those people. I am

seriously thinking of moving to a lower altitude.)

>

> So close a correlation that if you have the post-exertional

malaise, you have a heart problem was his statement. Therefore, why

would we need to get tested???

> Unless Cheney is not entirely confident in the study and wants

more data to accumulate?

>

> To " prove " it to some doc we are seeing?

>

You may have a " Q " problem but that is not a clear indicator that

the heart is the problem. There are a number of factors that

influence cardiac output, blood flow or " Q " . I'm writing an article

that I hope will give people a better understanding of " Q " . When

you see some of the influencing factors that affect " Q " you will

better understand why " Q " is low. It may not neccessarily be a

problem with the heart. (although for some people heart problem is a

possibility, however, I suspect that the majority of people with

CFS-FMS do not have heart problems, but they do have " Q " problems.)

All the best,

Jim

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]

Gosh, Jim, you are probably correct. I remember reading a study

showing that CFSers had 50% smaller adrenal glands than

normal controls. (Don't ask me to reference it, I can't remember)

That is why CFS/FMS is such a difficult condition to treat.

Mike C.

> You may have a " Q " problem but that is not a clear indicator that

> the heart is the problem. There are a number of factors that

> influence cardiac output, blood flow or " Q " . I'm writing an article

> that I hope will give people a better understanding of " Q " . When

> you see some of the influencing factors that affect " Q " you will

> better understand why " Q " is low. It may not neccessarily be a

> problem with the heart. (although for some people heart problem is a

> possibility, however, I suspect that the majority of people with

> CFS-FMS do not have heart problems, but they do have " Q " problems.)

>

> All the best,

> Jim

[Guest guest]

> But " Q " is a measure of the heart's functionality at a given

moment in time.

" Q " is the measure of blood flow, ie. cardiac output, as determined

by Ohm's Law (yes same name as the law which determine the flow of

electricity). It is not necessarily a measure of the hearts

functionality. The heart can be okay and a person could still

experience low " Q " .

All the best,

Jim

[Guest guest]

FYI- i got a cardiac output (CO) measurement using a test called

echocardiogram. The CO was low but the cardiologist insisted that

I had a 'normal heart'. He must have said to me 'normal heart'

7-8 times which I guess was an attempt to calm my worries. I don't

know if anyone knows, but I would imagine that the echocardiogram

test is better recognized by the 99% of asshole docs who know

nothing about CFS. (Please pardon my 'French', but I live in Dallas

where there aren't any CFS knowledgable docs-everyone has to vent

occasionally, I won't do it again).

Mike C (the CO test was 12 years ago-I should do it again because

my stamina is way down even tho I am active)

> " Q " is the measure of blood flow, ie. cardiac output, as

determined

> by Ohm's Law (yes same name as the law which determine the flow of

> electricity). It is not necessarily a measure of the hearts

> functionality. The heart can be okay and a person could still

> experience low " Q " .

>

> All the best,

> Jim

[Guest guest]

I wonder if I should go hear Cheney speak and ask why the 'Q' test

is better than the echocardiogram or stress echo test?? Of course

if anyone on this list knows, it could save me from asking a

stupid question. I live in Dallas.

Mike C.

-- In , " helen9jora "

<helen9jora@y...> wrote:

> Hi Adrienne:

>

> Yes, it's useful for disability, I believe a lot of his practice

is

> helping people get disability.

>

> I decided to go there after reading the material Carol posted, and

of

> course I haven't spoken to Cheney yet.

>

> He is giving a talk on June 18th in Dallas that will be on this

> subject and I think you can buy a video or whatever from Carol's

> website if you want to know more.

have been removed]

[Guest guest]

Hi Mike C.

Don't ever think that any question is stupid. I used to feel that way and

sometimes I still do but I try to ask anyway. Most likely you would be asking a

question that everyone else would like to ask.

N.

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

Question

I wonder if I should go hear Cheney speak and ask why the 'Q' test

is better than the echocardiogram or stress echo test?? Of course

if anyone on this list knows, it could save me from asking a

stupid question. I live in Dallas.

Mike C.

-- In

<mailto: >,

" helen9jora "

<helen9jora@y<mailto:helen9jora@y>...> wrote:

> Hi Adrienne:

>

> Yes, it's useful for disability, I believe a lot of his practice

is

> helping people get disability.

>

> I decided to go there after reading the material Carol posted, and

of

> course I haven't spoken to Cheney yet.

>

> He is giving a talk on June 18th in Dallas that will be on this

> subject and I think you can buy a video or whatever from Carol's

> website if you want to know more.

have been removed]

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 observtion. Maybe the 1/2 normal that you refer to below

have Lyme or something very similar to CFS/cardiomyopathy.

Mike C.

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

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

fact if you look at the studies on stroke volume in CFS only one was

able to find it without breaking CFS patients into subgroups as

Peckerman did.

been removed]

[Guest guest]

Don't know if this is the type of heart involvement in Cheney's theory,

but here are two studies showing heart involvement from Borrelia

infection.

The first, an animal test, shows that ALL of the animals inoculated with

Borrelia developed a heart problem, carditis.

The second discusses a specific Borrelia Burgdorferi case reports a

heart problem that was resolved, presumably by treatment (the abstract

is not clear on this point, but I believe that is what is inferred).

--Kurt

Lab Invest. 2004 Nov;84(11):1439-50.

Cardiac involvement in non-human primates infected with the Lyme disease

spirochete Borrelia burgdorferi.

Cadavid D, Bai Y, Hodzic E, Narayan K, Barthold SW, Pachner AR.

Department of Neurology and Neuroscience, UMDNJ-New Jersey Medical

School, Newark, NJ, USA. Cadavidi@...

To investigate cardiac involvement in the non-human primate (NHP) model

of Lyme disease, we inoculated 39 adult Macaca mulatta with Borrelia

burgdorferi sensu stricto strains N40 (BbN40) by needle (N=22, 14

immunocompetent (IC), seven permanently immunosuppressed (IS), and four

transiently immunosuppressed (TISP)) or by tick-bite (N=4, all TISP) or

strain 297 (Bb297) by needle (N=2 IS), or with B. garinii strains Pbi

(N=4, 2 TISP and 2 IS), 793 (N=2, TISP) or Pli (N=2, TISP). Five

uninfected NHPs were used as controls. Infection and inflammation was

studied in the hearts and the aorta removed at necropsy 2-32 months

after inoculation by (1) H & E and trichrome-staining; (2)

immunohistochemistry and digital image analysis; (3) Western blot

densitometry; and (4) TaqMan RT-PCR. All NHPs inoculated with BbN40

became infected and showed carditis at necropsy. The predominant cells

were T cells, plasma cells, and macrophages. There was increased IgG and

IgM in the heart independent of immunosuppression. The B-cell chemokine

BLC was significantly increased in IS-NHPs. There was increased

deposition of the complement membrane attack complex (MAC) in TISP and

IS-NHPs. The spirochetal load was very high in all BbN40-inoculated

IS-NHPs but minimal if any in IC or TISP NHPs. Double-immunostaining

revealed that many spirochetes in the heart of BbN40-IS NHPs had MAC on

their membranes. We conclude that carditis in NHPs infected with B.

burgdorferi is frequent and can persist for years but is mild unless

they are immunosupressed.

Cardiol Rev. 2004 Jul-Aug;12(4):185-7.

Lyme carditis: restitutio ad integrum documented by cardiac magnetic

resonance imaging.

Karadag B, Spieker LE, Schwitter J, Ruschitzka F, Luscher TF, Noll G,

Corti R.

Department of Cardiology, University Hospital, Zurich, Switzerland.

Lyme disease is a tickborne illness that could cause, weeks to months

later, complications involving the joints, central nervous system, and

cardiovascular system. We report a case of cardiac manifestation with

transitory higher degree atrioventricular block and dysfunction of the

left ventricle. Complete resolution without signs of myocardial scar is

demonstrated by cardiac magnetic resonance imaging. Copyright 2004

Lippincott and Wilkins

Publication Types:

* Case Reports

[Guest guest]

Cheney in his discussion (via Carol) said it is the only test that can be

performed sitting upright and that is when the problem manifests, not while

lying down. THAT'S what's new!!!

Adrienne

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

Question

I wonder if I should go hear Cheney speak and ask why the 'Q' test

is better than the echocardiogram or stress echo test?? Of course

if anyone on this list knows, it could save me from asking a

stupid question. I live in Dallas.

Mike C.

-- In , " helen9jora "

<helen9jora@y...> wrote:

> Hi Adrienne:

>

> Yes, it's useful for disability, I believe a lot of his practice

is

> helping people get disability.

>

> I decided to go there after reading the material Carol posted, and

of

> course I haven't spoken to Cheney yet.

>

> He is giving a talk on June 18th in Dallas that will be on this

> subject and I think you can buy a video or whatever from Carol's

> website if you want to know more.

have been removed]

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]

Theres an interesting connection here - Lerner, who is about the only one who

did cardiac research in CFS for years, is now studying Lyme prevalence in CFS -

finally someones looking into that. You can check out what he and others are

doing at

http://www.phoenix-cfs.org/EYE%20ON...The%20Researchers.htm

yakcamp22 <yakcamp22@...> wrote:

Good observtion. Maybe the 1/2 normal that you refer to below

have Lyme or something very similar to CFS/cardiomyopathy.

Mike C.

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

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

fact if you look at the studies on stroke volume in CFS only one was

able to find it without breaking CFS patients into subgroups as

Peckerman did.

been removed]

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]

Not a stupid question at all. Cheney is basically saying his test is the only

way to diagnose heart malfunction in CFS. We should find out why this

particular test as opposed to others is so important. I hope you ask that

question and report back the answer.

Natasha Vidan <prayjerusalem@...> wrote:Hi Mike C.

Don't ever think that any question is stupid. I used to feel that way and

sometimes I still do but I try to ask anyway. Most likely you would be asking a

question that everyone else would like to ask.

N.

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

Question

I wonder if I should go hear Cheney speak and ask why the 'Q' test

is better than the echocardiogram or stress echo test?? Of course

if anyone on this list knows, it could save me from asking a

stupid question. I live in Dallas.

Mike C.

-- In

<mailto: >,

" helen9jora "

<helen9jora@y<mailto:helen9jora@y>...> wrote:

> Hi Adrienne:

>

> Yes, it's useful for disability, I believe a lot of his practice

is

> helping people get disability.

>

> I decided to go there after reading the material Carol posted, and

of

> course I haven't spoken to Cheney yet.

>

> He is giving a talk on June 18th in Dallas that will be on this

> subject and I think you can buy a video or whatever from Carol's

> website if you want to know more.

have been removed]

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]

Thats a good point.

Adrienne <duckblossm@...> wrote:

Reviewing Cheney's heart info. Testing??

Question

Finally able to settle into the Cheney materials we received recently from

Carol; he is saying there is a clearcut correlation between the Q value and the

degree of disability for people who get sicker from exertion. Period.(I am one

of those people. I am seriously thinking of moving to a lower altitude.)

So close a correlation that if you have the post-exertional malaise, you

have a heart problem was his statement. Therefore, why would we need to get

tested???

Unless Cheney is not entirely confident in the study and wants more data to

accumulate?

To " prove " it to some doc we are seeing?

I can see that it certainly would help if you are trying to get on

disability.

Any ideas? At least one person said they were going to Cheney to get tested;

did he tell you why to do it?

Thanks,

Adrienne

[Guest guest]

Thats interesting; it kind of clears up why Lerner is doing a study on lyme in

CFS.

http://www.phoenix-cfs.org/EYE%20ON...The%20Researchers.htm

" Kurt (web) " <kurt@...> wrote:

Don't know if this is the type of heart involvement in Cheney's theory,

but here are two studies showing heart involvement from Borrelia

infection.

The first, an animal test, shows that ALL of the animals inoculated with

Borrelia developed a heart problem, carditis.

The second discusses a specific Borrelia Burgdorferi case reports a

heart problem that was resolved, presumably by treatment (the abstract

is not clear on this point, but I believe that is what is inferred).

--Kurt

Lab Invest. 2004 Nov;84(11):1439-50.

Cardiac involvement in non-human primates infected with the Lyme disease

spirochete Borrelia burgdorferi.

Cadavid D, Bai Y, Hodzic E, Narayan K, Barthold SW, Pachner AR.

Department of Neurology and Neuroscience, UMDNJ-New Jersey Medical

School, Newark, NJ, USA. Cadavidi@...

To investigate cardiac involvement in the non-human primate (NHP) model

of Lyme disease, we inoculated 39 adult Macaca mulatta with Borrelia

burgdorferi sensu stricto strains N40 (BbN40) by needle (N=22, 14

immunocompetent (IC), seven permanently immunosuppressed (IS), and four

transiently immunosuppressed (TISP)) or by tick-bite (N=4, all TISP) or

strain 297 (Bb297) by needle (N=2 IS), or with B. garinii strains Pbi

(N=4, 2 TISP and 2 IS), 793 (N=2, TISP) or Pli (N=2, TISP). Five

uninfected NHPs were used as controls. Infection and inflammation was

studied in the hearts and the aorta removed at necropsy 2-32 months

after inoculation by (1) H & E and trichrome-staining; (2)

immunohistochemistry and digital image analysis; (3) Western blot

densitometry; and (4) TaqMan RT-PCR. All NHPs inoculated with BbN40

became infected and showed carditis at necropsy. The predominant cells

were T cells, plasma cells, and macrophages. There was increased IgG and

IgM in the heart independent of immunosuppression. The B-cell chemokine

BLC was significantly increased in IS-NHPs. There was increased

deposition of the complement membrane attack complex (MAC) in TISP and

IS-NHPs. The spirochetal load was very high in all BbN40-inoculated

IS-NHPs but minimal if any in IC or TISP NHPs. Double-immunostaining

revealed that many spirochetes in the heart of BbN40-IS NHPs had MAC on

their membranes. We conclude that carditis in NHPs infected with B.

burgdorferi is frequent and can persist for years but is mild unless

they are immunosupressed.

Cardiol Rev. 2004 Jul-Aug;12(4):185-7.

Lyme carditis: restitutio ad integrum documented by cardiac magnetic

resonance imaging.

Karadag B, Spieker LE, Schwitter J, Ruschitzka F, Luscher TF, Noll G,

Corti R.

Department of Cardiology, University Hospital, Zurich, Switzerland.

Lyme disease is a tickborne illness that could cause, weeks to months

later, complications involving the joints, central nervous system, and

cardiovascular system. We report a case of cardiac manifestation with

transitory higher degree atrioventricular block and dysfunction of the

left ventricle. Complete resolution without signs of myocardial scar is

demonstrated by cardiac magnetic resonance imaging. Copyright 2004

Lippincott and Wilkins

Publication Types:

* Case Reports

[Guest guest]

Hi Kurt,

The " heart problem " that people are speculating on, found in the Peckerman

study, and Dr. Cheney's patients, is

Diastolic Heart Failure

which in turn is causing a cascade of other problems. It would probably help if

everyone read the study (tho I have trouble getting through it so far!).

Dr. Cheney has alot of interesting things to say about it in transcripts on the

DFW website, also. As usual, he'll continue to learn more every week, and from

every patient.

I think his June lecture will be fascinating.

Katrina

> Don't know if this is the type of heart involvement in Cheney's theory,

> but here are two studies showing heart involvement from Borrelia

> infection.

>

> The first, an animal test, shows that ALL of the animals inoculated with

> Borrelia developed a heart problem, carditis.

>

> The second discusses a specific Borrelia Burgdorferi case reports a

> heart problem that was resolved, presumably by treatment (the abstract

> is not clear on this point, but I believe that is what is inferred).

>

> --Kurt

>

>

>

>

> Lab Invest. 2004 Nov;84(11):1439-50.

>

>

> Cardiac involvement in non-human primates infected with the Lyme disease

> spirochete Borrelia burgdorferi.

>

> Cadavid D, Bai Y, Hodzic E, Narayan K, Barthold SW, Pachner AR.

>

> Department of Neurology and Neuroscience, UMDNJ-New Jersey Medical

> School, Newark, NJ, USA. Cadavidi@u...

>

> To investigate cardiac involvement in the non-human primate (NHP) model

> of Lyme disease, we inoculated 39 adult Macaca mulatta with Borrelia

> burgdorferi sensu stricto strains N40 (BbN40) by needle (N=22, 14

> immunocompetent (IC), seven permanently immunosuppressed (IS), and four

> transiently immunosuppressed (TISP)) or by tick-bite (N=4, all TISP) or

> strain 297 (Bb297) by needle (N=2 IS), or with B. garinii strains Pbi

> (N=4, 2 TISP and 2 IS), 793 (N=2, TISP) or Pli (N=2, TISP). Five

> uninfected NHPs were used as controls. Infection and inflammation was

> studied in the hearts and the aorta removed at necropsy 2-32 months

> after inoculation by (1) H & E and trichrome-staining; (2)

> immunohistochemistry and digital image analysis; (3) Western blot

> densitometry; and (4) TaqMan RT-PCR. All NHPs inoculated with BbN40

> became infected and showed carditis at necropsy. The predominant cells

> were T cells, plasma cells, and macrophages. There was increased IgG and

> IgM in the heart independent of immunosuppression. The B-cell chemokine

> BLC was significantly increased in IS-NHPs. There was increased

> deposition of the complement membrane attack complex (MAC) in TISP and

> IS-NHPs. The spirochetal load was very high in all BbN40-inoculated

> IS-NHPs but minimal if any in IC or TISP NHPs. Double-immunostaining

> revealed that many spirochetes in the heart of BbN40-IS NHPs had MAC on

> their membranes. We conclude that carditis in NHPs infected with B.

> burgdorferi is frequent and can persist for years but is mild unless

> they are immunosupressed.

>

>

> Cardiol Rev. 2004 Jul-Aug;12(4):185-7.

>

>

> Lyme carditis: restitutio ad integrum documented by cardiac magnetic

> resonance imaging.

>

> Karadag B, Spieker LE, Schwitter J, Ruschitzka F, Luscher TF, Noll G,

> Corti R.

>

> Department of Cardiology, University Hospital, Zurich, Switzerland.

>

> Lyme disease is a tickborne illness that could cause, weeks to months

> later, complications involving the joints, central nervous system, and

> cardiovascular system. We report a case of cardiac manifestation with

> transitory higher degree atrioventricular block and dysfunction of the

> left ventricle. Complete resolution without signs of myocardial scar is

> demonstrated by cardiac magnetic resonance imaging. Copyright 2004

> Lippincott and Wilkins

>

> Publication Types:

> * Case Reports

>

>

>

>

[Guest guest]

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. "

[Guest guest]

nailed it.

It is the " loading " of the heart, by standing, that reveals

the low output. Other output tests (if I am not mistaken)

can only sample Q when the patient is lying down.

Lying down CFS patients, with a Q deficit, will have less of

a load on their hearts and will therefore typically be

able to function in the low normal range of Q. So the

Q deficit is typically overlooked.

The impedance cardiograph/Minnesota algorhythim has been a

step forward in understanding this aspect of some cases of

CFS. I would say it helps us parce out a new subset of " CFS " ,

from a broader group.

[Or it may be that many, even most, CFS cases are progressing

towards this eventuality, just that some are more resistant than

others.]

Too, the feedback loop to Pall's work is in play to

obscure seeing this, i.e. CFS patients aren't dying like they

should, given that they have cardiomyopathy.

Thus, the typically used testing technology (echo?); and

the fact that most CFS patients with heart failure do not

progess along the normal course of heart failure (to death

or transplant); has combined to obscure this aspect of CFS

until now.

Zippy

- Life: the world's foremost sexually transmitted disease, and it's

fatal.

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

> 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. "

[Guest guest]

Jim, thank you for this info, I look forward to reading your article, do

you think the low blood volume found in CFS patients could be at the

heart of this problem and the channelopahty problems?

BW,

Sheila

Saturday, May 14, 2005, 4:52:57 PM, you wrote:

>> Reviewing Cheney's heart info.

t> Testing?? Question

>>

>>

>> Finally able to settle into the Cheney materials we received

t> recently from Carol; he is saying there is a clearcut correlation

t> between the Q value and the degree of disability for people who get

t> sicker from exertion. Period.(I am one of those people. I am

t> seriously thinking of moving to a lower altitude.)

>>

>> So close a correlation that if you have the post-exertional

t> malaise, you have a heart problem was his statement. Therefore, why

t> would we need to get tested???

>> Unless Cheney is not entirely confident in the study and wants

t> more data to accumulate?

>>

>> To " prove " it to some doc we are seeing?

>>

t> You may have a " Q " problem but that is not a clear indicator that

t> the heart is the problem. There are a number of factors that

t> influence cardiac output, blood flow or " Q " . I'm writing an article

t> that I hope will give people a better understanding of " Q " . When

t> you see some of the influencing factors that affect " Q " you will

t> better understand why " Q " is low. It may not neccessarily be a

t> problem with the heart. (although for some people heart problem is a

t> possibility, however, I suspect that the majority of people with

t> CFS-FMS do not have heart problems, but they do have " Q " problems.)

t> All the best,

t> Jim

t> This list is intended for patients to share personal

t> experiences with each other, not to give medical advice. If you

t> are interested in any treatment discussed here, please consult your

t> doctor.

t>

[Guest guest]

This is interesting, as that is a left ventricle problem, which is

exactly what shows up in the abstract about the Lyme case (Below).

Also, I believe that salt/c would be one therapy for this problem

because it will support the BP. Maybe salt/c is a diauretic, which is

also recommended for diastolic problems. hmm. Maybe yet another benefit

being seen from salt/c.

--Kurt

Re: Reviewing Cheney's heart info.

Testing?? Question

Hi Kurt,

The " heart problem " that people are speculating on, found in the

Peckerman study, and Dr. Cheney's patients, is

Diastolic Heart Failure

which in turn is causing a cascade of other problems. It would probably

help if everyone read the study (tho I have trouble getting through it

so far!).

Dr. Cheney has alot of interesting things to say about it in transcripts

on the DFW website, also. As usual, he'll continue to learn more every

week, and from every patient.

I think his June lecture will be fascinating.

Katrina

> Don't know if this is the type of heart involvement in Cheney's

theory,

> but here are two studies showing heart involvement from Borrelia

> infection.

>

> The first, an animal test, shows that ALL of the animals inoculated

with

> Borrelia developed a heart problem, carditis.

>

> The second discusses a specific Borrelia Burgdorferi case reports a

> heart problem that was resolved, presumably by treatment (the abstract

> is not clear on this point, but I believe that is what is inferred).

>

> --Kurt

>

>

>

>

> Lab Invest. 2004 Nov;84(11):1439-50.

>

>

> Cardiac involvement in non-human primates infected with the Lyme

disease

> spirochete Borrelia burgdorferi.

>

> Cadavid D, Bai Y, Hodzic E, Narayan K, Barthold SW, Pachner AR.

>

> Department of Neurology and Neuroscience, UMDNJ-New Jersey Medical

> School, Newark, NJ, USA. Cadavidi@u...

>

> To investigate cardiac involvement in the non-human primate (NHP)

model

> of Lyme disease, we inoculated 39 adult Macaca mulatta with Borrelia

> burgdorferi sensu stricto strains N40 (BbN40) by needle (N=22, 14

> immunocompetent (IC), seven permanently immunosuppressed (IS), and

four

> transiently immunosuppressed (TISP)) or by tick-bite (N=4, all TISP)

or

> strain 297 (Bb297) by needle (N=2 IS), or with B. garinii strains Pbi

> (N=4, 2 TISP and 2 IS), 793 (N=2, TISP) or Pli (N=2, TISP). Five

> uninfected NHPs were used as controls. Infection and inflammation was

> studied in the hearts and the aorta removed at necropsy 2-32 months

> after inoculation by (1) H & E and trichrome-staining; (2)

> immunohistochemistry and digital image analysis; (3) Western blot

> densitometry; and (4) TaqMan RT-PCR. All NHPs inoculated with BbN40

> became infected and showed carditis at necropsy. The predominant cells

> were T cells, plasma cells, and macrophages. There was increased IgG

and

> IgM in the heart independent of immunosuppression. The B-cell

chemokine

> BLC was significantly increased in IS-NHPs. There was increased

> deposition of the complement membrane attack complex (MAC) in TISP and

> IS-NHPs. The spirochetal load was very high in all BbN40-inoculated

> IS-NHPs but minimal if any in IC or TISP NHPs. Double-immunostaining

> revealed that many spirochetes in the heart of BbN40-IS NHPs had MAC

on

> their membranes. We conclude that carditis in NHPs infected with B.

> burgdorferi is frequent and can persist for years but is mild unless

> they are immunosupressed.

>

>

> Cardiol Rev. 2004 Jul-Aug;12(4):185-7.

>

>

> Lyme carditis: restitutio ad integrum documented by cardiac magnetic

> resonance imaging.

>

> Karadag B, Spieker LE, Schwitter J, Ruschitzka F, Luscher TF, Noll G,

> Corti R.

>

> Department of Cardiology, University Hospital, Zurich, Switzerland.

>

> Lyme disease is a tickborne illness that could cause, weeks to months

> later, complications involving the joints, central nervous system, and

> cardiovascular system. We report a case of cardiac manifestation with

> transitory higher degree atrioventricular block and dysfunction of the

> left ventricle. Complete resolution without signs of myocardial scar

is

> demonstrated by cardiac magnetic resonance imaging. Copyright 2004

> Lippincott and Wilkins

>

> Publication Types:

> * Case Reports

>

>

>

>

[Guest guest]

I'm not sure why he said that. In his interview with Immune Support Peckerman

stated CFS patients relative to controls showed even greater reductions in

cardiac output when lying down. This is why he discounts reduced blood volume

as a cause.

Adrienne <duckblossm@...> wrote:Cheney in his discussion (via Carol)

said it is the only test that can be performed sitting upright and that is when

the problem manifests, not while lying down. THAT'S what's new!!!

Adrienne

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

Question

I wonder if I should go hear Cheney speak and ask why the 'Q' test

is better than the echocardiogram or stress echo test?? Of course

if anyone on this list knows, it could save me from asking a

stupid question. I live in Dallas.

Mike C.

-- In , " helen9jora "

<helen9jora@y...> wrote:

> Hi Adrienne:

>

> Yes, it's useful for disability, I believe a lot of his practice

is

> helping people get disability.

>

> I decided to go there after reading the material Carol posted, and

of

> course I haven't spoken to Cheney yet.

>

> He is giving a talk on June 18th in Dallas that will be on this

> subject and I think you can buy a video or whatever from Carol's

> website if you want to know more.

have been removed]

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]

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]

She didnt nail it because she only listened to Cheney. If you read the

interview with Peckerman, the author of the study, that Carol listed in her

paper, you'll see that amount of cardiac output in CFS patients relative to the

controls was LOWER when they were lying down. This is why Peckerman suggests

low blood volume is not the cause of the reduced stroke volume. It also

indicates the heart has a problem dealing with more blood.

Peckerman says both values are at the low end of NORMAL.

bhp355 <zippy890@...> wrote:

nailed it.

It is the " loading " of the heart, by standing, that reveals

the low output. Other output tests (if I am not mistaken)

can only sample Q when the patient is lying down.

Lying down CFS patients, with a Q deficit, will have less of

a load on their hearts and will therefore typically be

able to function in the low normal range of Q. So the

Q deficit is typically overlooked.

The impedance cardiograph/Minnesota algorhythim has been a

step forward in understanding this aspect of some cases of

CFS. I would say it helps us parce out a new subset of " CFS " ,

from a broader group.

[Or it may be that many, even most, CFS cases are progressing

towards this eventuality, just that some are more resistant than

others.]

Too, the feedback loop to Pall's work is in play to

obscure seeing this, i.e. CFS patients aren't dying like they

should, given that they have cardiomyopathy.

Thus, the typically used testing technology (echo?); and

the fact that most CFS patients with heart failure do not

progess along the normal course of heart failure (to death

or transplant); has combined to obscure this aspect of CFS

until now.

Zippy

- Life: the world's foremost sexually transmitted disease, and it's

fatal.

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

> 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.

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