2nd Item important (IMHO) from conference

[Guest guest]

Ken,

I addmire your comments here, and don't think they can be dismissed as

factors in disease, though, frankly I strongly doubt (until I see good

epidemiological research, which CAN reveal this sort of thing--yet the

docs and the gov don't do it!) that the historic change from heavy labor

to more sedantary work caused ME/CFS.

Sans epidimeological studies (a crime!), one goes by one's own case and

others. I KNOW I wasn't sedantary when I got sick. In fact I was too

unsedantary way after I developed some of my symptoms and pushed for

about a year until I dropped. Literally.

Also, even now, lots of years and much debilitation later, I've climbed

to the point where I again (for the zillionth time) started at square

one, and exercise as exercise some (nothing aerobic or I'd drop). Though

I walk sometimes maybe up to aerobicness (!).

Am I better? I think I'm better than I would be if I laid in bed (and

wonder about the times I did lay in bed for extended periods, if I could

have done more). Don't know. BUT, exercise is (I'll bet the world on

this) NO CURE for this illness and why the term " exercise intolerance "

needs to be included and well understood as not meaning all avoidance of

exercise/activity.

I am sickened not by the exercise I do but by what I CANNOT do and by

what those Seattle people and others still aren't getting a critical mass

of research organized in some way to establish the broad parameters of

this illness.

Judith

On Thu, 01 Feb 2001 00:03:00 -0000 KenL@... writes:

> Poster #137 " Psysiologic correlates of Chronic Fatigue Syndrome-like

> symptoms development in a subset of healthy individuals deprived of

> routine aerobic exercise " , Lynden MS (town)..

>

> The individuals were all healhty had an average age of 26 and worked

>

> out AT LEAST 4 times per week.

>

> Conclusion: " a subset of individuals who begin to experience

> CFS-like

> symptoms when they are not performing regular exercise. This subset

> of individuals display associated baseline differences in autonomic

> and HPA axis hypo-responsiveness, which are typically observerd in

> cohorts with established CFS "

>

> EIGHT (out of 17 in the test) developed these symptoms!!!!!

> -------------------------------

>

> What does it mean? That physical activity (within appropriate

> limits) is very important for recovery. The more activity that can

> be

> done without a flare resulting, the better it is.

>

> For some, those who were jocks, and jockettes, at onset, they likely

>

> have the same metabolism as the sample that developed symptoms --

> some illness likely took them into inactivity and then the HPA axis

> changes etc... cascaded them in CFS.

>

> ----------

> With Laurie, we have been debating whether the change of work (from

> Industry to Info-workers) is a factor in the epidemic... or more

> specifically for women: the reduction of physical labor/activity in

> the home because of modern conviences and the increase of working

> away from home (most of such jobs are not as physically active as

> tending house was in the 1900-1950's).

>

> -------------

> For recovery, correcting the HPA axis by exercise is one possibility

>

> for some....

>

>

>

>

>

>

[Guest guest]

Many of us became ill whilst exercising regularly, what other

non-explanations are they going to dish out?

Ken, soon you'll be telling us that we are sick because we don't exercise!!!

Shades of CBT and what was his name? The it's all in your head guru that

went into exile in NZ?

Nelly

2nd Item important (IMHO) from conference

> Poster #137 " Psysiologic correlates of Chronic Fatigue Syndrome-like

> symptoms development in a subset of healthy individuals deprived of

> routine aerobic exercise " , Lynden MS (town)..

>

> The individuals were all healhty had an average age of 26 and worked

> out AT LEAST 4 times per week.

>

> Conclusion: " a subset of individuals who begin to experience CFS-like

> symptoms when they are not performing regular exercise. This subset

> of individuals display associated baseline differences in autonomic

> and HPA axis hypo-responsiveness, which are typically observerd in

> cohorts with established CFS "

>

> EIGHT (out of 17 in the test) developed these symptoms!!!!!

> -------------------------------

>

> What does it mean? That physical activity (within appropriate

> limits) is very important for recovery. The more activity that can be

> done without a flare resulting, the better it is.

>

> For some, those who were jocks, and jockettes, at onset, they likely

> have the same metabolism as the sample that developed symptoms --

> some illness likely took them into inactivity and then the HPA axis

> changes etc... cascaded them in CFS.

>

> ----------

> With Laurie, we have been debating whether the change of work (from

> Industry to Info-workers) is a factor in the epidemic... or more

> specifically for women: the reduction of physical labor/activity in

> the home because of modern conviences and the increase of working

> away from home (most of such jobs are not as physically active as

> tending house was in the 1900-1950's).

>

> -------------

> For recovery, correcting the HPA axis by exercise is one possibility

> for some....

[Guest guest]

Ken,

I don't understand what you are saying here. I was a very physically active

person when I became ill and push,push,pushed through the 1st 4 years even tho

at times it was more like crawling. As a matter of fact, at times was sure I

should work out more and would go the spa and not understand why I could barely

sit up to dress or drive home. I never stopped working (physical)until I

simply couldn't prop myself up. Even when I went on Disability, I tried every

way to exercise,biking,walking,etc. Terrible terrible suffering the whole time.I

had no idea about the post-exertion thing. Finally, finally, I gave up the

obsessive need to exercise and became pain-free at times for the first time in

years. And a tiny ability to think. I pushed for many years and to some extent,

still do. On rare occassion, I actually observe the 50% rule and have the

greatest relief of symptoms. I will say the only time I wonder if I could move

more and don't is this year on-line. (I've had CFIDS 15 years) Could I possibly

use some of the effort used here toward more movement? But,I usually come back

here because I am too wiped out and confused to last long at anything else. The

main thing I really wonder about my experience with exercise is could I possibly

find some to get more bang for my buck? Such as the suggestion of more anerobic

versus aerobic?> (Which is always what I have done with more energy, but always

end up collapsed. Whether I lasted a few minutes or ocassionally, a couple of

weeks (walking, swimming, dancing for instance). Well, I think a couple of times

I've walked every couple of days for a couple of weeks. That's about it! Does

this make sense to anyone?

I personally have NEVER met an inactive person who got CFIDS. And I've known

lots and lots. Katrina

> Many of us

became ill whilst exercising regularly, what other> non-explanations are they

going to dish out?> Ken, soon you'll be telling us that we are sick because we

don't exercise!!!> Shades of CBT and what was his name? The it's all in your

head guru that> went into exile in NZ?> Nelly> 2nd Item important (IMHO) from

conference> > > > Poster #137 " Psysiologic correlates of Chronic Fatigue

Syndrome-like> > symptoms development in a subset of healthy individuals

deprived of> > routine aerobic exercise " , Lynden MS (town)..> >> >

The individuals were all healhty had an average age of 26 and worked> > out AT

LEAST 4 times per week.> >> > Conclusion: " a subset of individuals who begin to

experience CFS-like> > symptoms when they are not performing regular exercise.

This subset> > of individuals display associated baseline differences in

autonomic> > and HPA axis hypo-responsiveness, which are typically observerd in>

> cohorts with established CFS " > >> > EIGHT (out of 17 in the test) developed

these symptoms!!!!!> > -------------------------------> >> > What does it mean?

That physical activity (within appropriate> > limits) is very important for

recovery. The more activity that can be> > done without a flare resulting, the

better it is.> >> > For some, those who were jocks, and jockettes, at onset,

they likely> > have the same metabolism as the sample that developed symptoms

--> > some illness likely took them into inactivity and then the HPA axis> >

changes etc... cascaded them in CFS.> >> > ----------> > With Laurie, we have

been debating whether the change of work (from> > Industry to Info-workers) is a

factor in the epidemic... or more> > specifically for women: the reduction of

physical labor/activity in> > the home because of modern conviences and the

increase of working> > away from home (most of such jobs are not as physically

active as> > tending house was in the 1900-1950's).> >> > -------------> > For

recovery, correcting the HPA axis by exercise is one possibility> > for some....

[Guest guest]

I poorly stated (especially given the history of exercise and CFIDS).

One of the belgium studies as part of a selection criteria, had

candidate patients walking around with a small leg monitoring device

(motion detector) for two weeks. They decided NOT to use self-

description on whether a person was active or not. They found TWO

subsets of CFIDS patients: one which was 'playing it safe for

physical activity' and the motion detector showed an almost totally

flat line. The other show considerably more activity.

The results between the two for symptom change were significant.

It may be because one COULD NOT be active, but the presenter

indicated (in passing) that it appear to be a psychological choice

instead of a physical choice.

This couple with the study I cited, impressed upon me the need to

keep as physically active as your condition permits SAFELY....

> Ken,

> I don't understand what you are saying here.

[Guest guest]

..

> The results between the two for symptom change were significant.

>It may be because one COULD NOT be active, but the presenter

>indicated (in passing) that it appear to be a psychological choice

>instead of a physical choice.

Ken,

I rest my case!

Nelly

BTW might the study have been conducted at the VUB in Brussels by some of

Kenny De Merleir's crowd? If so you can trash it immediately. He gave me a

Karnosfky score by just talking to me (and nothing else) for 5'.

Re: 2nd Item important (IMHO) from conference

> I poorly stated (especially given the history of exercise and CFIDS).

> One of the belgium studies as part of a selection criteria, had

> candidate patients walking around with a small leg monitoring device

> (motion detector) for two weeks. They decided NOT to use self-

> description on whether a person was active or not. They found TWO

> subsets of CFIDS patients: one which was 'playing it safe for

> physical activity' and the motion detector showed an almost totally

> flat line. The other show considerably more activity.

> The results between the two for symptom change were significant.

> It may be because one COULD NOT be active, but the presenter

> indicated (in passing) that it appear to be a psychological choice

> instead of a physical choice.

>

> This couple with the study I cited, impressed upon me the need to

> keep as physically active as your condition permits SAFELY....

>

>

>

>

>

>

> > Ken,

> > I don't understand what you are saying here.

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>