Re: Predicting high physical function in people with FM

[Guest guest]

So, what I get out of this bafflegab is that the least ill people with the

most support (young, educated men) do better. More ill people are by

definition more likely to use pain meds and not work out. Whoop-de-doo, does

this actually mean anything? Not as far as I can tell. Duh. Aylwin

[Guest guest]

Thanks for clearing that up. You are SOOOO right. I have been

complaining that even the website does no good for people like us who

have been sick for a long time. Obviously the research they are

spending money on is the wrong research. Perhaps they should think of

research that would actually help us not produce ridiculous statistics

that mean nothing. Everybody take care.

>

> So, what I get out of this bafflegab is that the least ill people

with the

> most support (young, educated men) do better. More ill people are by

> definition more likely to use pain meds and not work out. Whoop-de-

doo, does

> this actually mean anything? Not as far as I can tell. Duh. Aylwin

>

[Guest guest]

It also does not take into account those of us that are forced to work

or do more things physically ourselves because we have no choice.

And quite a few don't take prescription pain meds because doctors are

afraid to prescribe it or in some cases still treat FM patients as

having the pain " all in their heads " or they can't use them at work

because of the drowsy feeling some get from the pain meds. And I

personally don't know ANY FM sufferers (and I know quite a few whether

in person or through online groups) who are able to do

aerobics/strength training without paying for it majorly over then

next couple of days after they try it.

Bel

>

> So, what I get out of this bafflegab is that the least ill people

with the

> most support (young, educated men) do better. More ill people are by

> definition more likely to use pain meds and not work out.

Whoop-de-doo, does

> this actually mean anything? Not as far as I can tell. Duh. Aylwin

>

[Guest guest]

I apologize if I hurt someones feelings by saying the site isn't

helpful. My experience, however, has been just that. I have been

trying for eight months just to get a doctors list and nobody seems

to be able to handle that. I am sure there are many people that are

part of the organization and website that work very hard and I am not

minimizing their contribution. Even though being in touch with other

people is helpful, I have not had any real help from the website. The

organization should be working on educating people like the ones who

published this article. I am tired of having to work so hard for what

should be simple information. I am sure I am not the only one. If my

opinion is a problem for the website they are free to talk to me.

>

> Hi , well I disagree that the site isn't helpful! And I've had

ME 21

> years…for one thing, it puts us in touch with one another to share

info and

> support!

[Guest guest]

Hi , don’t really think it’s that kind of website…general info and peer

support is all. You need to take it for what it is, and not what it ain’t.

The whole ME/CFS/CFIDS scene is so scattered and contradictory…I don’t think

the magic doc’s list exists for PWME/CFS (believe me, I’ve tried…). There

are so few docs even taking it seriously let alone really providing research

driven treatment. And those who do are overwhelmed with patients and usually

have closed wait lists. So while you think it may be simple info, it isn’t

at all. It’s a crapshoot…and I have looked around (the internet) a LOT. And

there’s a lot of junk out there. Good luck, and if you do find that list,

please share it! Thanks, Aylwin xox

[Guest guest]

Now that they are finding out more about FM they are

finding that we don't respond to pain medications the

way one without FMS does. I don't seem to feel any

improvement on my medications for my FMS or RA but I

do know without them I can tell a HUGE difference.

Physical therapy stretches are great for it though as

I can feel my muscles even tighter if I skip them for

awhile. I pace very carefully though, I'd rather

underdo than overdo.

--- canadian_bel wrote:

> It also does not take into account those of us that

> are forced to work

> or do more things physically ourselves because we

> have no choice.

> And quite a few don't take prescription pain meds

> because doctors are

> afraid to prescribe it or in some cases still treat

> FM patients as

> having the pain " all in their heads " or they can't

> use them at work

> because of the drowsy feeling some get from the pain

> meds.

[Guest guest]

This site does some good.

I belong to the Washington State MCS site and that one

is a joke.

The owner allows certain people to send out so much

junk email with studies that have such bad science

involved that is sad.

When you call them on the junk that they send she

blocks your emails.

The site is down right childish with their ideas.

One kicker recently was one member that belongs to

this group that actually thinks they can ban the use

of PVC.

How would you wire your house or plumb it or have a

car without PVC? Or have a TV or VCR even?

There just aint a viable replacement.....

[Guest guest]

Okay, I'm lost again. What website are we talking about here?

Sandrea