Cheney

[Guest guest]

These Cheney threads and what he charges tend to go on for a long

time and are off topic. I would suggest that the posts relating

to the recent Cheney thread should have been done back channel, as

well as any future posts. Anything regarding experimental treatments

that Cheney is trying are certainly worthy of posting to the list.

I, for one, would be quite interested to know what the good Doctor

thinks about the gene work being done by the CDC.

Mike C.

[Guest guest]

Source: WebMD

Hi Tim,

Thanks for letting us know that Dr. Cheney is interested in impedence

cardiography. Do you know if his new machine is similar to the one

mentioned in the press release below?

After Peckerman presented his paper at the American Physiological Society

annual meeting, 2003, I tried to get a copy of it, but failed. I thought it

was the most important research to come along in years.

Sue ,

Upstate New York

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

Date: April 14, 2003

Author: DeNoon, reviewed By , MD

Tricky Heart May Cause Chronic Fatigue

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

Abnormal Heart Pumping After Exercise Linked to Chronic Fatigue Syndrome

April 14, 2003 -- Many people with chronic fatigue syndrome may have a

serious heart problem. A new finding hints that blood circulation problems

may be an underlying cause of the mysterious illness.

Nobody is sure what causes chronic fatigue syndrome. As more becomes known,

it's likely that some chronic fatigue patients will turn out to have

different underlying problems than others. One major symptom, however, is

feeling bad after exercise for more than 24 hours.

To Arnold Peckerman, MD, that sounds a lot like a blood circulation problem

seen in some heart patients. These patients have something called left

ventricular dysfunction, in which the main pumping chamber of the heart is

weak. When you exercise, your heart pumps out more blood. But these

patients' hearts actually pump less blood.

Peckerman's research team at the VA Medical Center in East Orange, N.J.,

used a sophisticated test to measure how well the heart pumps blood. They

gave the test to 16 chronic fatigue syndrome patients, both before and

after they exercised. They also tested four non-athletic volunteers. All of

the patients' and volunteers' hearts' pumped normally during rest. After

exercise, however, 13 of the 16 chronic fatigue patients' hearts pumped

less blood than they did at rest.

" Basically we are talking about heart failure, " Peckerman tells WebMD. " But

chronic fatigue syndrome is a progressive disease. If we were able to

detect this in its early stages, it is quite possible there might be a way

to treat it. "

Emory University cardiologist ph I. III, MD, says Peckerman's

findings on a potential cause of chronic fatigue syndrome are very

interesting. He agrees that these patients have serious heart problems.

" Typically we see this in people with three-vessel heart disease, "

tells WebMD. " A drop in [blood pumped by the heart] during exercise is not

a typical response. It is actually a marker of significant coronary artery

obstruction. "

Given the severity of the finding, wonders - if heart problems

might be a cause of chronic fatigue syndrome - why more chronic fatigue

patients aren't dying of heart disease. Both he and Peckerman agree that

more study is needed.

What's happening to the hearts of people with chronic fatigue syndrome?

It's too soon to tell, but Peckerman has a theory. " There is some indication

that chronic fatigue syndrome is precipitated by a viral infection, " he

says. " Some of the viruses that have been suspected have an affinity for the

heart. "

The virus infection might not be obvious, Peckerman suggests, because a

diagnosis of chronic fatigue syndrome is made only after six straight

months of unexplained fatigue. And that's only a minimum. Most patients

suffer much longer before being diagnosed with chronic fatigue syndrome.

That may explain - if his research is confirmed in later studies - why

such a heart problem has not been found to be a potential cause of chronic

fatigue syndrome before.

" It would appear that by the time they seek help and get diagnosed, the

infectious process has run through and remaining signs of infection are

very, very small, " he says. " In the meantime, some organ damage may have

been done. This may turn into symptoms later. "

Peckerman reported the findings at this week's meeting of the American

Physiological Society. His team is currently looking for more chronic

fatigue syndrome patients to participate in heart studies.

SOURCES: American Physiological Society annual meeting, 2003. News release,

American Physiological Society. Arnold Peckerman, PhD, research

physiologist, VA Medical Center, East Orange, N.J.; assistant professor of

neuroscience, University of Medicine and Dentistry of New Jersey, Newark.

ph I. III, MD, assistant professor of preventive and general

cardiology, Emory University, Atlanta.

--------

© 2003 WebMD Inc.

=======

> Message: 1 Date: Fri, 11 Feb 2005 11:46:09 -0500 From:

> candtcampbell@... Subject: Dr. Cheney

>

> ,

>

> Dr. Cheney is now closely following Dr. Peckerman's work with impedance

> cardiography. He bought his own machine with a grant from the Dallas-Ft. Worth

> folks. He hypothesizes that CFS and idiopathic cardiomyopathy are practically

> synonymous! His ideas have definitely changed, but it doesn't sound like you

> need to see him.

>

> Tim

[Guest guest]

Hi all,

Can someone explain to me the reason that Dr. Cheney's ideas do not seem to be

currently incorporated into the research reported on by the IACFS?  Maybe they

are and I don't know about it.  But they seem to have fallen by the wayside

somehow?  What happened, besides the problems with Dr. Cheney's health?

Thanks

Libby

[Guest guest]

Hi, Libby.

I can only give you some opinions on that. I'd say that part of the

reason is that the CFS research and clinical communities are quite

fragmented, underfunded for research, and don't really have a

consensus on many things. Dr. Cheney is not the only prominent CFS

clinician or researcher who is out of sync with the IACFS/ME

organization. Another part of the reason is that Dr. Cheney has

pretty much kept his own counsel, and had not participated much in

the IACFS/ME for many years until the most recent conference.

The IACFS/ME leadership is composed primarily of M.D.'s who are

mainline, conventional doctors who treat primarily using

pharmaceuticals, as they were trained to do in medical school, and

who primarily limit their research to their particular specialties.

The research that is reported on at IACFS/ME meetings for the most

part consists of studies involving a single medical specialty, such

as virology, neurology, endocrinology, immunology, etc., without an

overall pathogenesis hypothesis to guide the research, and

publication in peer-reviewed journals is emphasized. New treatments

are not favored by these doctors for the most part unless they have

been through double-blind placebo-controlled clinical trials.

Dr. Cheney uses complementary medical treatments and tends toward

alternative treatments, so he has a very different basic treatment

philosophy from that of the people in the IACFS/ME leadership. He

does his own research, evaluates the results himself, and bases his

treatment upon it. He has not published in peer-reviewed journals for

many years, preferring rather to give talks to certain groups. For

several years, he did not attend the IACFS/ME biannual meetings,

including the ones in Seattle, in Virginia, or in Madison,

Wisconsin. I think he was unwell during a significant part of that

time. He did attend the most recent meeting in Fort Lauderdale in

January 2007, and he spoke on his heart-related research and also

delivered an invited keynote address. Perhaps this will have

stimulated some interest in the cardiology of CFS among people in the

IACFS/ME.

People who do research on CFS have to scrounge up the money to do so,

and there is very little available for CFS research per se. The NIH

representative at the most recent conference encouraged CFS

researchers to package their research in such a way that they could

apply for money from different pots, such as the autism pot, which is

considerably bigger than the CFS pot. I think this is very

appropriate, because in my view autism and CFS are fundamentally the

same, the difference being the age at onset, and that produces the

observed differences in symptoms and epidemiology. In any case,

repackaging CFS research like this has a way of distorting what the

research is actually called.

These are just my opinions.

Rich

>

> Hi all,

>

> Can someone explain to me the reason that Dr. Cheney's ideas do not

seem to be currently incorporated into the research reported on by

the IACFS?  Maybe they are and I don't know about it.  But they seem

to have fallen by the wayside somehow?  What happened, besides the

problems with Dr. Cheney's health?

> Thanks

> Libby

>

>

>

>

>

>

>

[Guest guest]

I cannot answer the question about the IACFSME.

But, after a recovery period following his successful heart transplant, Dr.

Cheney re-opened the Cheney Clinic in late 2004. By then, he had discovered the

CFS Cardiac findings from the NIH Peckerman studies.

Dr. Cheney is alive and well and since early 2005, has been studying, testing

and experimentally treating the Cardiomyopathy/Diastolic Dysfunction, found in

the majority of his disabled ME/CFS patients.

As this work advances, he has also been lecturing on it around the country and

Internationally, at ME/CFS and other Medical Conferences.

I saw him in 2005-2006, tested and treated for Cardiomyopathy/DD, a form of

heart failure, with very distinct improvement in my then very distinct Cardiac

plus CNS and other symptoms.

AS my treatment and management have declined, with exposure to untested

Pesticides, directly sprayed from airplanes, then later, several weeks exposure

to smoke from Forest fires, then, other events, my Cardiac symptoms again , and

continued, have escalated.

I had procrastinated seeing a local Cardiologist for any follow-up for several

reasons:

A) Could not find anyone able to the specific tests

(plus DD was still relatively new in Cardiology and Medical School, as medicine

goes.)

Repeated past negative experiences in other Specialities when presenting with

the CFS albatross of a diagnosis

C) Additionally, frankly afraid of invasive tests...angiogram, dyes, etc.

I finally was referred a few weeks ago to a local Cardiology practice...2

*apparently* very good Specialists.

I copied my results and reports from the Cheney Clinic, and other material from

Dr. Cheney and others regarding the CFS " Cardiac Insufficiency Hypothesis " (See

M.E. Society of America website).

To my delight, the Cardiologist welcomed all material, with plans to read it

all.

Also, to my pleasant surprise, both technicians I encountered were very excited

about this work/test protocol, asked for links to it, were eager to read, pass

on and discuss with cronies " at the hospital " .

Dr. ordered a stress test , and at my other Doctor's suggestion, I prepared by

doing and taking every possible thing I have for my heart....determined to pass

it without needing the dye method.

I was thrilled to succeed, providing all measurements required, which amazed the

Doctor (who'd by then read my reports) considering " all you have going on here! "

He was very impressed with the materials, and stated, to my astonishment " it

seems that Dr. Cheney is becoming quite the expert on Diastolic Dysfunction " .

(But so far, there is still no way to test me here, and the stress test is for

different/other things).

He prescribed Nitroglycerin, which I learned is also used to relax " smooth

muscles " . (I think that's related to Autonomic System?, which is malfunctioning

in me/ME/CFS).

I can only guess that some of the work we have seen on DD in the Cardiology

field itself SINCE 2005, has contributed to this escalated interest in it here.

This Clinic is new for me, but so far, I feel much safer, should I run into

trouble, with 2 Heart Specialists and entire staff open to ME/CFS itself and

specifically, my DD.

Time will tell...

Katrina

>

> Hi all,

>

> Can someone explain to me the reason that Dr. Cheney's ideas do not seem to be

currently incorporated into the research reported on by the IACFS?  Maybe they

are and I don't know about it.  But they seem to have fallen by the wayside

somehow?  What happened, besides the problems with Dr. Cheney's health?

> Thanks

> Libby

>

>

>

>

>

>

>

[Guest guest]

katrina

thats great and very surprising! good for you. have you started the

nitrogylcerin?

I took the peckerman article to my managed care type doc a couple

years ago and she agreed to get me an echo but they had gotten rid of

the impedance cardiography machine they had cus people didnt like it

or get it or something, anyway, I almost regret doing the echo stress

the mainstream way because it probably just reinforced to her I am ok

as the results were normal. I can usually do whatever I want when well

rested, like I could go ride a bike or something but I dont because I

pay for it later severely, so in the moment I pulled off doing the

stress test but the next day I felt bad then for about 10 days.

anyway if you started nitroglycerin how is that? I wonder what dr

cheney would think of using that, isnt it pretty common? might not e

hard to get for people who can't go to these functional medicine

specialists. any side effects?

[Guest guest]

It was a judgement call to get the regular echo stress for reasons you say. AND

I was not sure about doing it loaded up on treatments, prior rest, feet up right

before it, etc. I took that suggestion to see how I fared at optimal, also so I

could manage it at all.

I asked Cardiologist how my good results squared with the DD reports. He said

they measure entirely different things.

The pos. results indicate I don't have standard type blockages or pumping prob.,

which I really wanted to find out. My Mom has a stent but has gotten to a

dangerous point Cardiovascularly/Carotid artery, etc. and apparently inoperable.

The nitroglycerin...I left a bit out. I have chest/cardiac pain, but other pain

that seemed different...all scary and acute in some recent stress re: my

Mom/family/whether to travel..

Dr. said it appears I *also* now have Acid Reflux..that's new for me. So he said

to use the Nitro if/when either pain is present (that it is not soley for or

diagnostic of angina/Cardiac but relaxes smooth muscles). I'm supposed to also

try an AR med but lost the prescription ((

I really wanted to start that first.

Some info says the more you use nitro, the less it works. Other says use it

preventively too, 3 or 4 times a day. Pretty wide range of options.

You're not supposed to break the nitro, but I did, to see my reaction, esp.

cause a standard side effect is strong headache, temporary, rush of

blood/flushing, low BP.

I did OK on the half, with all these side effects, but tolerable, and relief of

the AR pain.

I'm just learning/evaluating. Not sure how this will go, how I will use it.

FYI, Dr. Goldstein, maybe others, tried Nitro on some patients, who'd report 15

minutes of " feeling normal " , CFIDS wise. Heavy trade -off with the killer

headache tho.

Anyway, it's nothing to just jump into, handling it has strict perimeters..it's

very volitile...can't be exposed to air...and of course anything is individual,

to be under Dr. care, plus researched carefully...the extra ways we w/ME/CFS

need to.

Dr. Cheney didn't prescribe Nitro but somehwere he did mention it and thought I

was having angina type pain. That went away 10 days into my treatment.

K

>

> katrina

> thats great and very surprising! good for you. have you started the

> nitrogylcerin?

> I took the peckerman article to my managed care type doc a couple

> years ago and she agreed to get me an echo but they had gotten rid of

> the impedance cardiography machine they had cus people didnt like it

> or get it or something, anyway, I almost regret doing the echo stress

> the mainstream way because it probably just reinforced to her I am ok

> as the results were normal. I can usually do whatever I want when well

> rested, like I could go ride a bike or something but I dont because I

> pay for it later severely, so in the moment I pulled off doing the

> stress test but the next day I felt bad then for about 10 days.

>

>

> anyway if you started nitroglycerin how is that? I wonder what dr

> cheney would think of using that, isnt it pretty common? might not e

> hard to get for people who can't go to these functional medicine

> specialists. any side effects?

>