Re: Dennis DeYoung and Leanne Rimes reported having CFS

[Guest guest]

This illness is just the damndest thing.

I hate to point at someone and be denialist about their complaints,

but remember when Akers and Amy talked about

having CFS and yet they were still competing - albeit with

difficulty?

Some CFSers questioned their usefulness as CFS presenters for

promoting a view of the illness which gave the impression that it

can be overcome by force of will and strength.

It cannot! of course.

This illness is entirely overpowering and it just plain does not

care how much willpower or strength you have.

People can argue all they want about how a strong minded person

might deal with it better, but when you see someone struggle to

crawl to the bathroom or raise a glass of water to their mouth,

you're not seeing the luxury of competing in a sporting event - this

is sheer willpower trying to survive and meet fundament needs.

Well, DeYoung, Rimes, and Cher went on with their careers - or at

least, they could still sing.

And this is entirely inconsistent with the illness that swept

through Incline Village (You know, the one that got called by that

dreaded " f " word)

All of us had the sore throat from Hell. Looked like we had all

gargled with Drano. Remember the " Crimson Crescents " : Inflamed

Anterior Pharyngeal Pillars?

How about the " Loss of Fingerprints " ?

So you tell me. How can somebody return to singing if they can

scarcely swallow or speak from throat pain which persists for years

and the most aggressive therapy known has done very little to help?

How can they play guitar when their fingers are too numb to feel the

strings?

How can I avoid sounding like a jerk by saying " Gee, that doesn't

sound anything like the CFS that I saw " ?

I know these people aren't complainers and they have no reason to

make up their illness, but where are their sunken hollow eyes? Flat

fingertips. Swollen throat nodules and Crimson Crescents that make

their voice sound like gravel?

We had stuff in Incline that wasn't even described during Royal

Free! As far as I can tell, we saw everything described in the

Acheson paper - plus a few MORE things.

So at what point does the illness that WE saw as " Living Hell "

become " fatigue with just a couple more things thrown in " ?

I counted myself as one of the lucky ones because I could still

stand up most of the time.

We could debate forever over whether these celebs have " the real

deal " or not and not reach any usable conclusion.

But singing and playing at anything was completely out of the

question for us.

Hillenbrand is a much more " accurate " celeb.

-

[Guest guest]

On the one hand I agree, it's hard to imagine. But on the other hand we all are

afflicted differently, and some of us are more severe than others. I don't buy

that willpower has anything to do with it, but I do believe that money can make

a big difference. I remember when Michele Akers was getting IV's between every

match. How much better would we be if we were got IV's when we were feeling

lousy? We only hear about famous people when they are on tour, or there is an

Olympics, or whatever. Maybe in between, when they drop out of sight, they

spend 6 months in bed. Personally I think the reason I got better and a lot of

people don't, is that I spent a lot of money. But what I spent was a fraction

of what I would have spent if I were rich.

By the way, I never lost my fingerprints, I never had sunken hollow eyes, and

while I had sore throats almost constant for a few years, it was never such that

I could scarcely swallow or speak. (But unlike you, there were stretches when I

could barely stand up, plus times when my brain was so messed up I didn't

remember my birthday.)

I do remember Cher saying she was cured by diet, which right away makes me

suspicious because diet doesn't affect me at all. But there are PWC's that say

it does help them.

Doris

----- Original Message -----

I hate to point at someone and be denialist about their complaints,

but remember when Akers and Amy talked about

having CFS and yet they were still competing - albeit with

difficulty?

... Well, DeYoung, Rimes, and Cher went on with their careers - or at

least, they could still sing.

...So you tell me. How can somebody return to singing if they can

scarcely swallow or speak from throat pain which persists for years

and the most aggressive therapy known has done very little to help?

How can they play guitar when their fingers are too numb to feel the

strings?

...I counted myself as one of the lucky ones because I could still

stand up most of the time.

[Guest guest]

" Doris Brown " wrote: it's hard to imagine. But on the other hand

we all are afflicted differently, and some of us are more severe

than others.<

I was able to stand up for most of the time, but was unable to

predict exactly when those times would be when I could not, very

frustrating.

Even though the severity had quite a range, the commonality is that

we were all afflicted in the same way regarding those symptoms

chosen to define the illness.

We weren't much different from each other - We were pretty much all

the same in possessing these particular signs and symptoms peculiar

to the syndrome.

The reason that Dr Cheney and Dr chose me to be in the CDC

study group to refine the parameters for the syndrome even though I

wasn't the sickest, is that I was EBV negative and had the fewest

comorbid pathogens of the cohort.

They told me it was because I was the " The purest and most pristine

case of CFS " they knew of. Dr Cheney said about 60% recover

somewhat. 20% are almost at full function - but the remaining 20%

are still just as sick as they ever were. It may have been the

paucity of pathogens that gave me a better chance at recovering to

the level I have - but I have to stay away from neurotoxic exposures

or I quickly become nonfunctional again.

It always blows me away when someone says that " CFS is not ME " using

the rationale that we were less ill. - We had all the symptoms of

Ramsay defined Myalgic Encephalomyelits - PLUS a few obvious ones

that he didn't even mention.

-

CFSResearch.org » Chronic Fatigue Syndrome » Cheney

GPCA - A CFIDS Symposium: Critical Issues 1998

Nov. 1, Temple University, Philadelphia, PA

by Dr. Cheney and Dr. Suhadolnik

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

DR. PAUL CHENEY, AFTERNOON SPEAKER

Cheney, MD, of the Bald Head Island Clinic in North Carolina,

was our afternoon speaker. He gave a historical perspective on CFIDS

prevalence studies, including the latest statistics presented at the

Boston conference. CDC officials now estimate, that there are 260-

300 CFIDS patients per 100,000 in a Witchita, KA based study. Dr.

Cheney observed that these statistics make CFIDS more prevalent than

diabetes. He speculated that CFIDS may have been an epidemic (in

terms of new cases), peaking during the late 1980's. Dr. Cheney went

on to discuss the physical findings in CFIDS, including lymph node

tenderness, crimson crescents, fever, hyper-reflexivity, diminished

vestibular function, and the obliteration of fingerprints in some

patients.

[Guest guest]

In reply: I was very fit before I became sick. I wasn't an Olympian.

But I was considering a career as a professional dancer and actor.

Having been active in High School sports I took it as a challenge

that I could lick this thing by pushing through the " wall " so to

speak. Two years later I was finished. In between I learned how to

be a carpentor, finished my B.A. and even had bit roles in a couple

small films. Two thing that separated me from some. I was young and

healthy before becoming ill. So my body could put up a better fight

then I coud even imagine today. And second I was outdoors a lot

camping in my car or along the beach. I think the fresh air and

sunlight was actually good for me. Although I did not always have a

home those first 4 years I stayed healthy enough to stay alive.

Their were many times I rather have been in a rest home or hospital

but my pride would not let me go this way. I could continue to

scrape by and follow the cycles of my disease. Eventually I had to

accept help from Social Security and the mental health system. Big

blows to my ego and confidence. We all have a different baseline and

we all have an illness unique to ourselves. I still resent the fact

that I could not continue to pursue my career or express my love of

life. It's now that I pray most for a cure for us all. When I

aproach dispair. But knowledge can be a good friend. It's important

to acknowledge the life we have been given. And the streangth that

comes with this. Their is a quality it brings that is more authentic

then many of the achievements of our well body lives. Pain is real.

Suffering is real. And the struggle to triumph over them is in some

ways an honor as well as a gift! On the stormy road to self.

Mike K. Kleven, Auburn WA