e_j_anderson

A quickie here:

Cheney spoke about how the body compensates for low cardiac output. There are "nozzles" in the network of blood vessels that clamp down, just like cutting off the flow with the nozzle on the end of a garden hose. If you have low water flow, you restrict the opening to make the water shoot farther. The same sort of thing happens in the body.

In addition -- this was something completely new to me -- in the microcapillaries, there are little muscles surrounding the capillaries that "pulse" to move the blood forward. This pulsing happens normally about once per minute. When blood flow is low, the pulsing rate can increase by a factor of ten, to squeeze the blood forward through the tiniest vessels and out to the veins where it can return to the heart.

Cheney spoke about his own experience with cardiomyopathy (a different kind of cardiomyopathy than CFIDSers experience, but the law cardiac output has the same devastating consequences). He talked about how his various organ systems shut down or were compromised. The body apparently restricted blood flow to his gut in order to conserve the little blood flow that was left for what it deemed more important functions. The result of this was leaky gut and allergic/hypersensitivity reactions. Does this sound familiar to anyone???

He said the number of foods he could tolerate got less and less, until at the very end he could only tolerate pineapple and sushi. And then, just before his heart transplant, he could only eat pineapple.

When his new heart started working, as his body's organ systems recovered, he found his sensitivies disappeared. Now he can eat anything and everything. Like a human garbage can, he said. All because he got a 20 year old heart. This is how profound the effects of a reduced flow of blood can be. If this is what many of us are suffering from, it is no wonder we have all these multi-system dysregulations and deficiencies and allergic reactions.


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richard

Thanks for these reports.

It is incredible to me how long it took for the root cause of CFIDS to come
to light. Why? Why? Why?

Will this be overturned I wonder? I don't see how. I believe Cheney,
Peckerman et al have really nailed it. I feel excited and releived yet
scared to realise what is going wrong. Let's face it there had to be
something pretty untrivial to make us feel so goddamn sick.

As a journalist with CFIDS living in the UK I cannot WAIT to try and publish
an article in the national press here about this.

I throw out three questions at random to anone who thinks they can answer
them:

(1) Would a heart transplant cure CFIDS?

(2) If someone recovered from CFIDS could they then die from heart
failure?

(3) I read recently about a 28 year old soccer player who collapsed
and died of heart failure during a match. He was found not to
have had a heart attcak but had heavily congested arteries. He also had a
flu virus a few months earlier and it is believed
this further weakened his heart. He didn't have CFIDS, to my knowledge. His
widow said that he refused to rest during the episode but
carried on working and playing soccer. Hmmmm - seems to be a pattern her of
flu type viruses weakening heart muscle, which may or may not lead to CFS
but certainlty does the heart no good at all.

Richard V


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joa03cew

Could anyone tell me how to unsuscribe from the CFS discussion e-mails? I was
receiving them to do with a project I was doing as part of my degree and now I
have finished it.

Thanks.

Cherry.


Quoting Richard Vanahlen <richard@enigma.fsworld.co.uk>:

hesapa

Why? Well, why did it take till the late 1800's for doctors to figure
out they ought to wash their hands between cutting up cadavers and
helping moms deliver their babies, let alone do a little surgery? For a
very long time we've had a "direct connection" cause-effect mentality in
so-called western medicine. Look for an injury. Look for a bug. No
injury, no bug, no disease regardless of symptoms. In the on-line
transcript of Cheney's discussion with one patient (Carol Sieverling I
think?) he notes that regular classical congestive heart failure, CHF
1.0, can be diagnosed by any competent cardiologist in about one
minute. They know what to look for. They have machines which help.
Our version, CHF 2.0, doesn't look the same, doesn't show up per the 1.0
hallmarks, doesn't show up on machines, until this impedence test, which
machinery isn't all that common, and which takes using the right
algorythm and somebody properly trained to interpret it. Not what
current cardiologists have gotten in med school. Kind of like those 3-D
images hidden in flat art, requiring the viewer to slightly unfocus and
look past what they think they're seeing, so CHF 2.0 has apparently been
there, in not quite plain sight. One of those deals where, once you do
see it, it's impossible not to.

re the three questions:

1.) I think so. I also think, since CHF 2.0 doesn't send us into what
Cheney calls the "death spiral", we would never get on a transplant list.

2.) I think so. Cheney even mentions, in the transcript, that CHF 2.0
may for some of us eventually result in the sort of death spiral he
experienced: when we lie down, instead of feeling better, the excess
fluid in the tissues would back up into the lungs so breathing would be
difficult. Simultaneously, the kidneys reach critical failure and
that's when the new pump is a matter of life or death. In the
transcript he also describes the incremental failure of the various
organs (starting with skin). At heart, there is a two step failure.
CHF 1.0 goes through both into the death spiral. So far, CHF 2.0 stops
after the first step and we just live in a state of CFS/ME. But nobody
really knows the long-term. Maybe in another 20 years the 2.0 version
will work into its own death spiral.

3.) Possibly the soccer player had the 1.0 version, or another cardiac
difficulty all together.

I have read Marc A. Silver's Success With Heart Failure: Health and
Hope for those with Congestive Heart Failure, and am in the process of
reading Stephen Sinatra's The Sinatra Solution. Both are
cardiologists. Neither book is specific for CFS/ME, neither deals with
this CHF 2.0, but they are helpful generally. The Sinatra book is
fairly technical, explaining the problems at the cellular level: not
enough ATP production, too much production of toxic by-products.
Bascially it's what Cheney also says: the problem fundamentally is that
the mitochondria are not making enough energy. From there a host of
cell-level problems arise, which we eventually feel as the long list of
CFS/ME symptoms. He also explains how certain substances can be taken
as supplements which will help the mitochondria function better, the
cell function better and from there the heart and all the other bits of
us. We are familiar with some of these already: CoQ10 and carnitine in
particular. Dr. Silver got so interested in this in the last 20 years,
he went back to school and earned degrees in psychology and nutrition.
I'm not far into this book, as my brain glazes over after a few pages of
anything remotely technical, but so far it seems promising.

best! Marnia

bliss

CW> Could anyone tell me how to unsuscribe from the CFS
CW> discussion e-mails? I was receiving them to do with a project
CW> I was doing as part of my degree and now I have finished it.
CW> Thanks.
CW> Cherry.


Just use the following address:


CFS-L-SIGNOFF-REQUEST@MAELSTROM.STJOHNS.EDU

(the message text and the Subject: line do not matter)

original message snipped

later & may you never have reason to search this list
for answers for yourself or loved ones.

Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

reality.sys corrupted. universe halted. reboot (y/n)?

e_j_anderson

1. The damage in CFIDS is not like necrotic tissue. The heart is structurally sound, it just doesn't function well because of low energy output of the cells -- or so Cheney thinks -- poor mitochondria function. (there is biochemical evidence for the mitochondria defect, though) If this mitochondria malfunction is due to infection, a transplanted heart could easily become infected and you'd be back to square one.

2. I don't think there's enough information to know this. Heart failure from what? If you recovered from CFIDS you could still have a heart attack, destroying large amounts of muscle tissue, and then the heart declines and you die from heart failure. But that would be something different entirely. Let's figure out how to recover from CFIDS first, then worry about dying from heart failure later. :-)

3. I'm sure the soccer player had a different kind of heart problem than people with CFS do.

JMO

Eric


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writeplace

I think Cheny is right in that some CFIDS patients may have reduced cardiac
output. However, I have chronic fatigue due to postural orthostatic
tacycardia. I surely have reduced cardiac output on standing. However, I
thought the heart was an innocent bystander..that my reduced output is due
to a failure of my blood vessals to contract properly due to a collegan
defect or a transmitter defect and therefore the blood pools in the legs
when standing and the heart is less full and speeds up to compensate.
Although I take a beta blocker to slow my heart down, and whether I take the
beta blocker or not, my symptoms from being on my feet are the same.

Michigan Jan
----- Original Message -----
From: <e_j_anderson@juno.com>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Saturday, October 22, 2005 8:46 AM
Subject: MED: Cheney video report, part 2½

bliss

e>> (1) Would a heart transplant cure CFIDS?

Possibly but it is extreme and people with just cfids are
unlikely to end up on the transplant list.
e>> (2) If someone recovered from CFIDS could they then
e>> die from heart failure?

Plenty of people in the early years of transplants died
because either their lifestyle or genetics recreated the
previous illness in their new hearts.
e>> (3) I read recently about a 28 year old soccer player
e>> who collapsed and died of heart failure during a match.
e> 1. The damage in CFIDS is not like necrotic tissue. The heart
e> is structurally sound, it just doesn't function well because
e> of low energy output of the cells -- or so Cheney thinks --
e> poor mitochondria function. (there is biochemical evidence for
e> the mitochondria defect, though) If this mitochondria
e> malfunction is due to infection, a transplanted heart could
e> easily become infected and you'd be back to square one.

And Dr. Lerner finds active virual infection (incomplete
replication) in the heart.

He also found the RNase in light molecular weight significant.
e> 2. I don't think there's enough information to know this.
e> Heart failure from what? If you recovered from CFIDS you could
e> still have a heart attack, destroying large amounts of muscle
e> tissue, and then the heart declines and you die from heart
e> failure. But that would be something different entirely. Let's
e> figure out how to recover from CFIDS first, then worry about
e> dying from heart failure later. :-)
e> 3. I'm sure the soccer player had a different kind of heart
e> problem than people with CFS do.

Not necessarily and maybe he didn't last long enough to
develop a CFIDS. He failed to rest and if he hadn't been capable
of such extreme exertion as his sport he might not have been
able to hurt himself so badly that he died.
e> JMO
e> Eric

later
Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

Ban Censorship!

writeplace

Again, I want to thank Eric for so thoughtfully recording his insights on
the video to this list.

By the way, I have seen Dr Learner. I had an initial appointment and did all
his tests except for the holter monitor (I have had several in the past) I
chose not to have the holter or to go back for his synopsis or treatment
plan. However I didhave him write me a letter summary of all the test
results and the results of the physical he did in his office. All the blood
tests for viruses were negative. My ekg was negative.

I choose not to go back becasue he treats with anti-viral meds and I did not
want to take them without a blood test to tell me there was something there
to treat.

Michigan Jan

nonnyh

Hi-Has anyone checked into
http://www.healthboards.com/boards/archive/index.php/t-176443.html which
deals with all kinds of health issues and most specifically Addisons and
secondary adrenal fatigue: it seems logical that our internal stresses
mount as we try to deal with CFIDS and maybe we all get worn out. Nancy
Harris