Cfids And Pots

[lthomas521]

For about the first 20 years of the CFIDS epidemic, we were told that CFIDS was a "functional somatic syndrome" that was probably really some sort of mental disorder. The challenge for physicians was supposedly to get these people to stop thinking about their health and stop going to doctors. Then the research from Peckerman and coworkers showed that CFIDS is really a form of heart failure. The severe disability these people exhibit results from the fact that they have serious circulatory insufficiency, although the precise problem with the heart wasn't easy to see, until cardiologists learned how to detect diastolic dysfunction. No, CFIDS isn't "all in the patient's mind." No, they can't overcome it through cognitive behavioral therapy or graded exercise. In fact, it's obnoxious to try to persuade people with that degree of disability that they are not really ill, and exercise can be extremely harmful for people with CFIDS, because they are already in borderline organ failure.

http://www.cfids-cab.org/MESA/Lerner.html

Dr. Paul Cheney was one of the few doctors who said all along that CFIDS patients were really sick. I saw the 3-hour video with Dr. Cheney talking about the heart failure in CFIDS. Astonishing. He makes it all make sense. And a lot of what he has to say is probably useful for POTS patients, as well. I don't know whether anyone with POTS has the kind of diastolic dysfunction he talks about, although I have orthostatic diastolic hypertension, but many of us have such low blood volume that we are in a state of circulatory insufficiency regardless. Cheney describes the havoc that circulatory insufficiency can wreak on your body, especially on your gut.

[lthomas521]

CFIDS, for those of you who are wondering, is chronic fatigue syndrome (chronic fatigue and immune dysfunction syndrome), also known as CFS.

It's due to a peculiar form of heart failure. Who knew?

[MomtoGiuliana]

Isn't heart failure considered life-threatening at some level? So is CFIDS also? Or is is still something different...?

Another thing I don't understand...if CFIDS patients are "near organ failure" (as one of the documents states) that surely sounds life threatening, and why would there not be any tests to show this to be the case--or are there...??

I don't have CFIDS--I don't think--I have just been diagnosed with POTS--but I realise there is a lot of overlap of symptoms.

Katherine

[DancingLight]

Katherine, I am totally confused too?

Plus, it says right at the top 'HYPOTHESIS' so it makes me think there isn't a lot to back it up yet?

A confuzzed Emily

[MomtoGiuliana]

Hi Emily--I also saw it is a "hypothesis"--thanks for stating that.

To clarify, I would like to understand the data/studies that led to the hypothesis...

Katherine

[yogini]

I don't understand this research either. The abstract says that it applies to a "prominent subset" of the CFS population, which sounds like it means only some of the patients who stand out from the rest. Although I'm not as on top of CFS as many others here, the below research seems contrary to what I know - I've always read that exercise helps and haven't heard of organ failure or heart failure. I agree with the others that, if that were the case, CFS would not be so controversial. I have seen other research on the circulatory insufficiency in CFS, but the rest does not make sense to me.

[DancingLight]

I'm with you Katherine and Rita...

I see one of the top CFS specialists in the country and he is certainly not worried about organ failure or heart failure in me...and I'm a SEVERE case. I think he would have told me if my life was in danger from such things.

I'm considered to have Lyme, CFS, POTS and NMH....

Emily

[lthomas521]

By "prominent subset," I think that they mean people who are disabled by CFIDS. They are in heart failure because their heart isn't circulating blood sufficiently. It wasn't detected because the problem is lack of filling between beats (which is similar to our problem), and because they don't die.

[DancingLight]

If they are in heart failure, why don't they die???

[MightyMouse]

"failure" in this sense isn't complete failure, but a failure to function optimally aka heart dysfuntcion... heart failure isn't the same as heart death or heart attack or congestive heart failure (which involves fluid accumulation backing up into the lungs).

Nina

[lthomas521]

Heart failure doesn't mean that you die. It doesn't mean that the heart stops beating. It merely means that the heart "fails" to pump adequately to meet the body's needs.

The researchers at UMDNJ were looking for a "marker," some test that would be positive for disabled people and negative for nondisabled people, so that it would be easier to decide who should be able to go on disability. What they found was that the people who were disabled from CFIDS (chronic fatigue syndrome) had low cardiac output. The more disabled they were, the worse their cardiac output was. It was a very tight correlation, and the probability of results that dramatic due to random chance in their sample were remote. In retrospect, this explained why people with CFIDS were more disabled than anyone other than people who have cardiomyopathy (heart muscle disease). Because in essence they do have a form of cardiomyopathy. But instead of a pumping defect, they have a problem with the heart relaxing enough between beats to refill. But the cardiac output problem was pretty much the same.

Those of us with low pulse pressure and low blood volume are in a similar situation, which explains why we can be so severely disabled. The other thing that was interesting was that CFIDS was a "dynamic" problem. If people with CFIDS try to exercise, they might be fine while they are exerting themselves, but they "crash" afterwards. Cheney calls this the "push-crash" phenomenon. I'm sure lots of us know what that is like!