Re: Dr. Bell: Review of the “Two-day Exercise Test”

[Guest guest]

This is fantastic! Bless dear Dr. Bell…to bad one has to risk relapse to

prove anything…still it is a HUGE step forward and I for one would be

willing…what have we got to lose, really? Hopefully, if this is followed up,

eventually they will be able to test for the aspect without exercise

inducement??? Aylwin xox

[Guest guest]

While I realize the benefit of this theory, and appauld those, like

Dr. Bell, who help us demonstrate the catastrophic loss of " life "

following assessment or overexertion, I also recognize the other side.

Yesterday, I underwent an extensive physical assessment that included

3.5 hrs. of lifting, walking, climbing stairs, crawling, balancing,

pushing, pulling, and the Purdue Pegboard test. I walked away in

level 8-9 pain. Three hours later, I bawled as pain blasted every

cell of my body.

It took me an hour of stretching to get out of bed today. I am still

in major pain and my head is ready to explode. I walk like I'm

deformed by osteosporosis. The thought of going back today to see how

much worse I am is the equivalent of a terrroristic threat. I'm not

sure I could walk into the building much let alone get up and ride a

stationary bicycle. I honestly believe it would leave me

hospitalized. Just typing this post is putting sharp pains and aches

through my shoulders, back, and legs. My hands and forearms are numb

(thank goodness), allowing me to type without feeling further damage

to stiffened finger joints.

I don't care if this setback is a result of fibro, CFS, or

combinations thereof. We have to find a way to document these

dibilitating diseases without putting ourselves into critical care.

Maybe it is not the " disabled " that need to change, but the

mechanisms used to determine our level of disability both humanely

and accurately.

Please, Dr. Bell, continue working on our behalf. We count on your

efforts, and the medical professionals that are aware of our plight,

to provide us with hope for our futures!

DeAnn

>

> Literature Review by Dr. Bell

> Review of the " Two-day Exercise Test "

>

> In the most recent Journal of Chronic Fatigue Syndrome (Vol 14,

> Number 2, 2007) there are two articles which may be the first to

> offer an objective proof of disability in ME/CFS. More importantly,

> if shown to be correct, they may give us an avenue to test and

> measure the biochemical abnormality which causes the symptom

> pattern. In this short review I would like to review these two

> papers and present a case of pediatric CFS which demonstrates the

> same abnormalities.

[Guest guest]

Hi DeAnn:

Dr. Bell is my CFS doctor. I already know about this test because he

explained it to me when he was first doing it. He said if you do this test,

disability calls you disabled the next day and you automatically get disability.

He told me that I would be in bed for a month after doing this test. But it

would be the only way if disability didn't give me benefits. But they did

because Dr. Bell got them for me and luckily I didn't have to take this test.

But he's waiting on a grant for research to see if in NYC they are going to

do research on CFS. If the grant doesn't go through, then he's leaving. He

said he may be gone by June and that's why I just got in there to make sure I

saw him in case he left.

Lou

dnichels wrote:

While I realize the benefit of this theory, and appauld those, like

Dr. Bell, who help us demonstrate the catastrophic loss of " life "

following assessment or overexertion, I also recognize the other side.

[Guest guest]

Hi DeAnn, yes there’s the problem, that we have to knacker ourselves and

risk relapse to prove we are ill…I’m sorry it was so hard on you, but that

should show them something? Let’s hope. Rest up and feel better, Aylwin xox

_____

Subject: Re: Dr. Bell: Review of the “Two-day Exercise Test”

While I realize the benefit of this theory, and appauld those, like

Dr. Bell, who help us demonstrate the catastrophic loss of " life "

following assessment or overexertion, I also recognize the other side.

Yesterday, I underwent an extensive physical assessment that included

3.5 hrs. of lifting, walking, climbing stairs, crawling, balancing,

pushing, pulling, and the Purdue Pegboard test. I walked away in

level 8-9 pain. Three hours later, I bawled as pain blasted every

cell of my body.

[Guest guest]

For those expressing compassion for my well being, both posted and in

their thoughts, I want to thank you.

While the test was grueling, and even more painful when I realize how

very limited my physical skills really are, it seems that these

efforts were really a part of a larger picture.

Look at those that suffered for years, if not decades, with a disease

that was " in their heads " before medical advances found out

otherwise. Those brave souls are our back bone, our foundation, and

our hope for futher change.

If enough of us go through the horrific challenge of these physical

assessments, and are then back at our doctors demanding relief from

something that was previously less aggrevated, it sends a clear

signal that while we are getting somewhere, the growth might only be

lateral.

It might take me months to get back to where I was last Wednesday,

but that's part of the challengin journey life offers at that time.

Good luck to those of you seeking clarification of your " level of

ability " (my denial term for disability.)

Have a hopeful and prosperous week!

DeAnn

[Guest guest]

Wow, it sure is hard & nasty to have to make oneself more ill, just to prove

that one is ill at all…back when I first got disability (Canadian) it was

just based on the doctor’s report and your own report of ability level…as

in, the doc would ask “how far can you walk”? - and you’d answer, 20 feet or

whatever, and then s/he would mark that down on the application. (This does

not mean I am getting proper medical care now though!) Times sure have

changed, and I’m so sorry you had to go through all this. It’s actually

pretty abusive, if you think about it. I hope you now have the opportunity

to rest up, and I hope you are feeling better very soon. XOX Aylwin

[Guest guest]

Hi ,

So nice to hear from you again on the group and with some more

very informative info from Dr. Bell! Hey my mom advised against me

flying out to NY or the east coast from Hawaii because she didn't

think I could even survive the trip let alone Dr. Bell's exercise

test. How many hours of exercise total in the test? ~kulia

>

> Hi DeAnn:

>

> Dr. Bell is my CFS doctor. I already know about this test

because he explained it to me when he was first doing it. He said

if you do this test, disability calls you disabled the next day and

you automatically get disability. He told me that I would be in bed

for a month after doing this test. But it would be the only way if

disability didn't give me benefits. But they did because Dr. Bell

got them for me and luckily I didn't have to take this test.

[Guest guest]

Is Dr. Bell really leaving? Will he be continuing research and seeing patients?

I would hate to lose him. We really need him. Diane

[Guest guest]

Is Dr. Bell really leaving? Will he be continuing research and seeing patients?

I would hate to lose him. We really need him. Diane What is the name of the

test????

cindy post wrote: Hi DeAnn:

Dr. Bell is my CFS doctor. I already know about this test because he explained

it to me when he was first doing it. He said if you do this test, disability

calls you disabled the next day and you automatically get disability. He told me

that I would be in bed for a month after doing this test. But it would be the

only way if disability didn't give me benefits. But they did because Dr. Bell

got them for me and luckily I didn't have to take this test.