RE: Canadian CFS research study now recruiting

[Guest guest]

Hi All, While I do approve of the tack this research is taking, in terms of

finding a reliable diagnostic tool, basically the test is designed to drive

people into relapse! Does the risk of such a test outweigh the benefit???

It would be nice to be believed, but is it worth being bedbound for

years/rest of one’s life (if one isn’t already, if one could even accomplish

test #1) to be proved right? Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jayne Barnard

Sent: Wednesday, December 19, 2007 10:30 AM

To: CFAlliance

Subject: Canadian CFS research study now recruiting

Dr. Ellie Stein (a psychiatrist, but don't hold it against her; she's long

since gotten past *that* phase) is recruiting Alberta women with CFS for a

study of post-exertional malaise.

The U of Calgary kinesiology dept will be exercise-testing volunteers

(stationery bicycle) on two successive days, to compare their first and

second exercise performance along with various markers of their physical

condition, heart rate, blood profiles etc.

[Guest guest]

Well Dr. Bell is one of our heroes fer sure…I thought about it more, and if

I didn’t already have disability and needed to prove it, I would be willing

to take this test. Just to prove to all the naysayers that it’s irrefutably

real would be worth it! You are a lucky duck to have him as your doc. Aylwin

xox

[Guest guest]

Hi Aylwin:

The blood volume test they have to do at a hospital down in the basement. I

forget what the area is called. I had to go to a University Hospital to have it

done. Which from here, is about an hour or more away. Dr. Bell said by

examining me and all my symptoms he said that I probably have low blood volume.

But if you take the test, then they know for sure.

You can walk around during the test and you can move your arm and everything.

They have certain times they inject things into your blood and they have certain

times that they draw it out. I can't think of the three things they inject.

Cardiologists don't understand about the low blood volume so they wouldn't

have a clue to give you the test. Dr. Bell is the one who told me why I had

palpitations all night long when laying down trying to go to sleep. The

cardiologist had me on pills to regulate the palps and plus he had me wear a 24

hr holter monitor to see what was wrong. As soon as Dr. Bell told me why I had

the palps and what to do, I never had them again.

So I relayed the info to my cardiologist. Dr. Bell said cardiologists don't

understand about the blood volume and things like that.

Lou

" J. Catchpole " wrote:

Hi, well I read somewhere that the tilt table test can put us types into

cardiac arrest! So perhaps it’s best he has another way. How do they do the

blood volume test???

[Guest guest]

Thanks ! I always wondered about testing for low blood volume, and

googled up his info on it. I’ve heard that cardiologist do not deal with

this – amazing hey? TC, Aylwin xox

[Guest guest]

Hi Aylwin:

I have a copy of the blood volume test but it's somewhere and I can't find it

right now. Because it has the names of what they inject. I know one is called

albumin but I can't think of the other two.

What they do is first is insert a portable IV in your arm and continue to keep

it there. The left arm is where they inject the things. The right arm always

was where they withdrew it out. So one arm is always for one thing and the

other arm is always for the other one.

My arm was pretty sore by the time they got done because of the IV.

Lou

"

[Guest guest]

Thanks Lou, no worries…it sounds like not too bad a test as long as

one isn’t allergic to the injectables! Wow, do I wish I had a doc willing to

pursues this. Aylwin xox

[Guest guest]

If a person has severe fatigue, than more than likely you have the low blood

volume. That's why Dr. Bell was pretty positive I had that.

It's in the nuclear dept. of a hospital. I remembered that as I couldn't

remember where it was located.

I don't think a doc will ever send anyone for this test unless they're

familiar with it. I don't think docs know about this.

I'm not allergic to anything and smells don't bother me either.

Lou

" J. Catchpole " wrote:

Thanks Lou, no worries…it sounds like not too bad a test as long as

one isn’t allergic to the injectables! Wow, do I wish I had a doc willing to

pursues this. Aylwin xox