Re: Exercise not good for CFS - PAPER

[Guest guest]

Hi Doris,

I agree totally with you about CFS and FM not being in

the same catagory.

My diagnosis is ME but I meet the criteria for CFS. I

did not have the stiffness of FM or the painful

trigger points until I was hit by a motorcycle a few

years ago.

Although some people have both CFS and FM, I was one

of the lucky ones. They feel so very different - for

example my ME symptoms are better in cold weather but

the FM symtoms are worse in cold weather.

With kindest regards,

Annette

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[Guest guest]

Re: Exercise not good for CFS - PAPER

I dont think anybody's really looked into that. It doesnt get mentioned much.

I think its really significant - at least for me.

it is very significant for me and more so every year, I get stiffer and

stiffer and tighter and tighter and not one Dr will listen to that with much

concern or address it. It means nothing to them, yet its a major part of my

symptoms now and can be very disabling.

Marcia

[Guest guest]

I am informed. But just because some people have both, doesn't mean they are

the same thing. We need more subcategories in this illness, not less, in order

to do studies that make any sense and figure out what treatments really work for

each category. At least researchers usually pick one or the other FM or CFS

because study results would be even more meaningless if they lumped them

together.

Doris

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

From: Cattttttt@...

You are not informed. FM and CFS can be seperate entities or can be together.

some people get CFS first, then FM. OR CFS, then nothing. Some people get FM,

then nothing, or FM, then CFS. Some people get both together from day one.

You are lucky to only have one of them.

[Guest guest]

I know that terrible feeling. Going in the pool and moving around helps

alleviate it for a little while... I know.. then you have to take a shower..

which

is exhausting... right? Have you tried Magnesium?

[Guest guest]

Stretching is very important for me. I highly reccomend the Wharton book of

stretching. I felt I was turning into a hunched over hollow chested old man.

Stretching really helps with the stiffness and can release alot of energy.

Marcia <mgrahn@...> wrote:

Re: Exercise not good for CFS - PAPER

I dont think anybody's really looked into that. It doesnt get mentioned much.

I think its really significant - at least for me.

it is very significant for me and more so every year, I get stiffer and

stiffer and tighter and tighter and not one Dr will listen to that with much

concern or address it. It means nothing to them, yet its a major part of my

symptoms now and can be very disabling.

Marcia

[Guest guest]

Hi Carol,

This is the type of exercise that makes me very shakey

and weak. If repeated it causes sore throats etc.

I would be very foolish to do this just for your

benefit as I've done it all before many times for

people who do not belive me (survivor of graded

exercise programs, Yoga, Thai-chi and many other

things over 20 years).

Hope this helps you in the understanding of exercise

intolerance in PWME and CFS.

With warmest regards,

Annette

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[Guest guest]

> Even tho I was the one who posted the paper I agree. I am an

upper functioning CFS patient and I've had the terrible relapses

that others have had from pushing it too far but in the state I'm in

it is good to stretch regularly and it is good to walk regularly and

I dont do well when I dont do those things. <snip>

Cort, the operative words being " ...IN THE STATE I'M IN " .

Please (addressed to all), mild(lier) affected ME/CFIDS sufferers,

don't use that to further stigmatise severe sufferers for their

biopathological disease limitations!

I see this and have been subjected to it time and time again. The

assumption that severe sufferers are just not " doing enough " to help

themselves, that they're lazy -- or if that's not PC enough, they

have " faulty illness beliefs [concerning exercise] " and

are " avoidant " as Wessely, Sharpe, chalder et al would claim (and

that they are the basis of the illness).

Severe sufferers don't just lose friends, family, medical " care " ,

they lose mild sufferers' support too, as some of the latter sadly

prefer to believe their good fortune is due to their own behaviour

and strength of will, hence severe sufferers must be unmotivated and

weak willed and undeserving of practical help/advocacy.

There also seems to be a pervasive fallacy in certain quarters that

mobile patients are the " norm " and the more severely affected are

abnormal, and need to be *made* to be the " norm " .

So some sufferers are mildly affected and can do bench presses.

Bully for them. So FMS is a distinct illness from ME, differentiated

in lack of exercise intolerance. Bully for them. So non-PWME

people want to believe all that holds PWME back from exercising

is " fatigue " . Wrong.

Exercise beyond the " activity ceiling " in M.E -- a ceiling which in

the most severe cases lies on the floor -- and get ready to roll

out the red carpet for over 50 symptoms, most likely severe or

increased malaise, pain, muscle weakness, decreased cognitive

function and exacerbated immune system. Catttt's description of

symptoms that remit with exercise is a differential DX to M.E. It's

the PATTERN of symptoms that is telling, and has been recognised by

every genuine ME experts for 50 years.

If exercise makes it better, it's not M.E. If reversing

deconditioning makes it better, you're priomary DX is

deconditioning, not M.E. If you have mild M.E. and can exercise,

know how lucky you are, pray you never have severe M.E, and NEVER,

EVER dare make life more difficult for severe sufferers by claiming

their activity ceiling can be moved (i.e. primary problem is

deconditioning, lack of willpower etc).

Ramsey talked of stabilisation at a " low level " as the best natural

prognosis for severe M.E. Today Cheney talks of " organ failure "

caused by standing up. The pathology of ME is disease progression

with exercise -- many have died of it.

End of! Well, probably not...

Mike

[Guest guest]

I diasagree. I have been sick since 1989. I had FM (ME) only at that time,

until 1992, when I got active CMV. Yes, there was exercise intolerance. But not

totally. Some can be done to alleviate the pain to a degree. Even though I

was s o sick, I actaully taught easy low impact aerobic classes for 2 years. I

worked up to it. Then I went home to my bed. It took my pain away. If you start

very slow, and stay in touch with your body, you can do some exercise,

starting with stretching. Start with just one stretch. I challenge you to start

with

just one stretch and see if doing one stretch makes you sick. None of this is

aboout being lazy. None of this is about what you wrote about it. It is about

having stretching and exercise alleviate your pain, and making you feel more

in charge and in control of your body. Doing too much is very harmful. Here is

a prime example. MY business has picked up so dramatically that I have been

training 7 people a day 6 days a week this week. At $50 a person (sometimes

also training 2 together) I am highly motivated to keep doing it no matter how I

feel. By yesterday morning, my body was saying STOP. But I had many cleints

waiting. I trained them all.The last one in th epool, after which I had to take

a shower. Even drying my hair was an ordeal. Last night, I awoke at 2 AM with

a horrible migraine with vommitting. I could not work today, and still have a

little after the migraine pain. I had to cancel ecveryone today. Most of my

clients also ahve medical issues, so when I called and told them why I couldn't

make it they had no problem with it, and asked if there was anything they

could do for me to help me out, such as go to the store, or pharmacy, etc. The

moral of the story is NEVER GIVE UP> KEEP ON TRYING> TRY IN VERY SMALL

INCREMENTS> LISTEN TO YOUR BODY> no one can understand what having this

disease(S) is

like other than ourselves. And I have both of these diseases, MIKE. Had FM

first, for years, then got the other. Now I mostly have just FM. Organ Failure

from standing up... I used to get worse from standing up until 3 years ago when

I was put on a drug called Lisinopril. Dying from Exercise... If you keeep on

going until you have the migraine I had, and go back to work immediately,

before it is even gone, then make your immune defficiency worse.. But who would

do that., when they feel so horrible as I do right now. I'll be fine by Monday.

Not going out tonight or tomorrow,. Just hanging out. Going to an outdoor

concert tomorrow night. Mild exercise alleviates pain. Please stop discouraging

people from alleviating their pain under the supervision of a qualified

professional. I have eveyr symptom you described. In fact, I was dying. I had no

immune system and was sick all the time, in constant pain, WEalked around with

my

neck hanging down. It hurt to much to pick it up. My boyfriend at the time

carried me up and down stairs. It hurt too much to walk. It hurt to even walk

one

or 2 steps. Mike, you have no clue who you are writing to. I was one of the

sickest people around, and I was going to die. Years ago, my doctor agreed

taht I was dying. Now i expect to live a full life span. There is hope for us.

There is pain allevaition. Mild exercise helps. Beginning with stretching. Once

again, Mike. I challenge you to do one stretch. Tell me that one stretch is

making you sicker Mike. Please do one stretch and respond to me about how doing

that one stretch is making you sicker.

[Guest guest]

.. I used to get worse from standing up until 3 years ago when

I was put on a drug called Lisinopril. Dying from Exercise...

Catttt,

glad to hear you are feeling so much better now! Good for you! This is

interesting this drug helps you. This is a high blood pressure med they put my

husb on when he was diag with diabetes. It makes him dizzy when he bends over,

and he's other wise healthy and over 200lb man. It did drop his BP about 20

points fairly quickly so its been effective for getting his BP really low (they

want it pretty low now in diabetes, like 120's/80). Was your BP high before you

started taking the Lisinopril and is it in the normal range now?

Marcia

[Guest guest]

Mike, I'm not going to argue any of your points. You obviously are reacting on

a gut level because of things that have been said to you by people who don't

know what they're talking about. So it makes sense to me what you wrote what you

did. However... I don't believe you can truly make such absolute statements

as these. How can you, when the cause and etiology of ME or non-ME CFS is not

known? There is a lot of " lumping " and " guessing " going on when criteria are

developed for these illnesses. The fact is, there may be people, even people

who have been labeled " ME " who can become somewhat better from some types of

exercise. Who knows? It is no better to say absolutely no they can't, than it

is for people to tell you that you " should " be able to exercise. Because we are

not all the same and the illness is not understood.

I fit all the criteria for ME. However looking back, despite seeing 5 different

" specialists " , I now see that none of them pushed very hard to determine the

extent of my exercise intolerance. They (and I) sort of jumped to the conlusion

based on a few things I had observed. But because the common notion is that

exercise makes you worse, I didn't put very hard to really find out. Yes, when

I was up and around, I had to be in bed more later. But exercising is actually

pretty different than doing something like trying to shop in terms of the stress

it puts on you. Yes, when I felt like shit and could barely stand, there was no

way I would feel better from exercising. And yes, I tried one or two

experiments where I lifted small weight one day and was sicker the next day.

But I don't truly believe they were good tests because I didn't repeat them

enough to rule out other things. I wish now that I had done more testing and

really determined for sure whether a little exercise made ME worse or better.

Now I am mainly recovered and I am exercising a lot. I was better before I

started the exercise, so I'm not saying exercise cured me. But maybe a little

could have kept my NK cell function up so my infections weren't so bad, or

improved my cellular energy, or kept me from gaining some of the 30 pounds I

gained over 5 years. I really have no idea if I could have done more exercising

while I was sick, because I didn't really try, because I was told that it wasn't

good for PWC's. But I think none of us should take anything for granted. We

simply respond too differently to the same medictions, supplements and other

treatments, either because our bodies are different our because we don't all

have exactly the same thing. I wouldn't see anything wrong with saying (if this

turns out to be the case) that " most people " get made worse by exercise, but

some people are helped by it. That wouldn't discount the people that can't

exercise. Well, maybe to ignorant people but they're going to have their dumb

opinions anyway. And it also doesn't say that you can become well by

exercising. But maybe exercise is a means of symptom control for some people.

I think we are all gathering information from as many people and places as

possible, so it is not right to jump on someone who thinks exercise helped them.

Maybe they are on to something, and that is how we learn. At the same time, it

is not right for them to insist that it will help everyone.

Doris

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

So some sufferers are mildly affected and can do bench presses.

Bully for them. So FMS is a distinct illness from ME, differentiated

in lack of exercise intolerance. Bully for them. So non-PWME

people want to believe all that holds PWME back from exercising

is " fatigue " . Wrong.

Exercise beyond the " activity ceiling " in M.E -- a ceiling which in

the most severe cases lies on the floor -- and get ready to roll

out the red carpet for over 50 symptoms, most likely severe or

increased malaise, pain, muscle weakness, decreased cognitive

function and exacerbated immune system. Catttt's description of

symptoms that remit with exercise is a differential DX to M.E. It's

the PATTERN of symptoms that is telling, and has been recognised by

every genuine ME experts for 50 years.

If exercise makes it better, it's not M.E. If reversing

deconditioning makes it better, you're priomary DX is

deconditioning, not M.E. If you have mild M.E. and can exercise,

know how lucky you are, pray you never have severe M.E, and NEVER,

EVER dare make life more difficult for severe sufferers by claiming

their activity ceiling can be moved (i.e. primary problem is

deconditioning, lack of willpower etc).

[Guest guest]

I have cognitive problems with numbers, as my MD says all of long term

patients have, so I will have to be a bit vague. The bottom number of my blood

presure was about 100 at rest. they caught this at age 35 (I am now 49). I was

only

116 lbs at that time. (Now 135 lbs) The cause was determined to be ideopathic

(of no known origin). No family history, no other cause. I was put on

Tenormin, which only increased the fatigue. I hated it. When Dr Bihari put me on

the

lisinopril I was so thrilled that it had the side effect of allowing me to

stand upp for long periods of time. Before it, I used to feel like the blood

was

pooling in the bottom of my legs, and the aching, tearing FM pain was much

worse. It made a huge difference in my life. As for the dizziness, I find that

so many people get dizzy for so many reasons, especially women. Some women get

dizzy because of menopause, their MD's tell them. Some because of changes of

positions and BP. Some because there is actually a virus that lasts a year and

causes vertigo. Who knows... my clients, the healthy ones... have the

dizziness problem, and their MD's say these are the causes. My friends too.

[Guest guest]

Hi

Are you sure the bottom number was 100, because that is high blood pressure and

everything else you describe would make me think low blood pressure. Dizziness,

blood pooling etc are usually low blood pressure. If 100 were the high number,

that would be kind of low. Although mine was often 90 or less on the top

number. But 100 is low for normal people.

Doris

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

From: Cattttttt@...

The bottom number of my blood

presure was about 100 at rest. they caught this at age 35 (I am now 49). I was

only

116 lbs at that time.

[Guest guest]

Hi Anette,

Am I to understand that doing one or two stretches makes you sicker? If

that is the case, I have to admit that I have never encountered that with

anyone. Literally, one or two stretches, held for ten seconds? I just got your

email today...

Carol

[Guest guest]

Hi, .

I think that in CFS we are dealing with a combination of genetic

variations and what are referred to as " environmental factors. " I

think these can include pathogens, biological or chemical toxins,

and physical trauma (which I think you agree with), but I think that

in some cases it can include other things that you don't agree with,

such as extreme physical exertion or emotional stress. I'm not

saying that this applies in your particular case, but it appears to

in many cases. I have no trouble believing that your case was

caused by a problem with mold, as you've said, but not all PWCs have

a problem with mold. As I've said many times, I believe the

evidence indicates that there are subsets within the case definition

for CFS, and that not all cases have the same root causes. I

realize that you don't like that either, and that you think that the

syndrome you " helped start " was hijacked by interlopers, but my view

is that what is, is, and that we have to deal with the situation as

it actually exists.

Concerning Ewald's ideas, I think he could well be right for

many diseases, but in the case of CFS, I don't think the

evolutionary pressures have had enough time to eliminate the

relevant genetic variations from the gene pool. In addition, I

think that most people who get CFS have already had an opportunity

to reproduce before they become ill, so this evolutionary selection

probably wouldn't work in this case.

Rich

>

> > I strongly suspect that the reason is inherited genetic

variations

> > in genes that code for enzymes and other proteins that are

involved

> with making and using glutathione. Such gene variations have

already

> been found in autistic kids, by S. Jill and

> > colleagues. I hope this will be studied in CFS as well.

> > Rich

>

>

> Rich,

> If the genetics were immutable and were present as

normal " heritable "

> variations, but the illness emerged in a rate that transcends

> reproduction of recessive traits, then wouldn't the reason for the

> increase in illness be whatever induced the expression of those

> pre-existing genetic traits?

> When one looks at the " life difficulties " of autistics and CFSers,

it

> seems unlikely that they would be able to breed quickly enough to

> create a rapidly expanding generation which inherited these genes.

> Prof Ewalds concepts of Evolutionary Biology assert that

genetic

> traits which create such illnesses have a tendency to be removed

from

> the gene pool because sufferers have such difficulty surviving.

> http://www.pbs.org/kcet/closertotruth/explore/show_05.html

> -

[Guest guest]

yes it has been definitely high since i was 35 yrs old, for absolutely no

reason; not overweight, exercise regularly. I was told that blood pressure

abnomalities of all kinds occur with FM/CFIDS, although most of the time it is

low

blood pressure.

[Guest guest]

I can imagine. I try to avoid things that tighten my muscles a lot . I used

to like to ride horses every now and then, but that is bad for me now. I was

asked to carry a cooler the other nite. I said sure... no problem.. within 5

minutes, I felt the stiffness coming on, and said that we had to stop every 5

minutes, and someone else has to do it on the way back. My body is my livelihood

and some things are just not worth it. I have to recline with my legs up at

the computer. No regular sitting for me... but that's fine.