Purpose of this group

[Guest guest]

At 10:34 PM 7/25/2005, S. wrote:

>Is this group used mostly for reviews?

we use it for whatever we like... as a check-in to be accountable, as a

sounding board for rotation ideas, and yes to write and read reviews. i

think that as long as we stay on topic with things related to working out

then our list mom laura will be happy

:*c.

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[Guest guest]

ciscocindy1@... wrote:

> So is the purpose of this group to talk mostly about the types of

> videos we work out to? Just want to make sure that I don't step out

> of line with my questions.

hi! yeah, it is about 'exercise videos'. normally we post about

what workout we have done and give a review of it -- info about how

long it is, who the instructor is, what type of exercise it is

(cardio, strength, yoga, etc), what exercises are included, and then

our opinion of the workout.

:*carolyn.

[Guest guest]

>

>

>

> To not do so now, is not demeaning to those giving testimony, it

is a CHANGE of policy, the original intent of this list, and the

interests of those with the NeuroImmune disease of ME/CFS.

>

> Katrina

>

>

I completely agree that this is a change in policy and I am very

disappointed in the direction this list is headed.

This is a medical treatment board, the ONLY one there is. Why can't

others have their discussions on the many boards that discuss this

and leave this one alone.

There is no other place to discuss medical treatments for ME/CFS.

This is not a board for depression although some of us deal with

depression.

This is not a board for support issues although some of us have a

lot of drama in our lives (I for one do not but others have no

choice).

This is not a board for cancer although some of us have dealt with

it and face it in the future.

Why is everyone trying to change the nature and purpose of this

group? It is not that you are not welcome, but if the list does not

suit your purposes, then feel free to leave (said nicely), but

please don't try to change the list to suit your purposes (again

said nicely).

Really, we need to get back to EXPERIMENTAL, MEDICAL treatments and

leave the politics on another board.

Marti

[Guest guest]

-I wish the original thread wouldnt have been deleted because I

already wrote a thoughtful post about this right around the time it

got deleted. If I need to prove street cred, I have been dxed in past

with cfids by Cheney.

I don't care if someone comes on and says they twirled in a circle 3x

and threw salt over their shoulder and now they are cured, I feel

savvy enough to ascertain for myself whether I want to look into it more.

A friend of mine who recovered from an astrocytoma is a believer in

working with autonomic system via therapies similar to gupta, those

therpies arent specific to cfs, these ideas could apply to any

disease. It finally registered with me that some of the

neuropersonalwork sutffisnt classic psychology--- as that stuff used

to put my defenses up for same reasons you longtimers here mention,

but I think there is the potential it is like a physical thing in a

way, not " thinking positive thoughts " but like rebreathing which is

allowed to be talked about here---in that its something we can do

ourself to ourself like rebreathing or self-massage or experimenting

with sleep etc its just different cus its not taking a medication or

supplement which is what we have it in our mind is a " real " medical

therapy only. The human body has amazing potential under right

circumstances to help itself.

At any rate, I don't know if these neurothings are good or quackery,

right now that isnt the point.I just want this bickering to stop so I

can get back to just reading new ideas and deciding for myself.

Channeling the spectrum from NOam Chomsky to Ayn RAnd could we PLEASE

just allow the freedom of people to post any therapy they are

interested in or have been helped by so that we can all have

opportunity to evaluate FOR OURSELF whether it is valid. If you think

its bunk either ignore it or say simply ya think its bunk and move on.

And much respect in closing to you guys who have been posting here

from the beginning, I have had cfs for many years but only discoverd

this place a couple years ago but trust me its not gettting in my way

to hear the gamut of ideas, i can sort through them, what is

disturbing is the debate about it. Please consider what sort or

rigidity you are advocating with these narrow parameters........

and I value you all so nothing personal.

-- In , " marti_zavala "

<marti_zavala@...> wrote:

>

>

> >

> >

> >

> > To not do so now, is not demeaning to those giving testimony, it

> is a CHANGE of policy, the original intent of this list, and the

> interests of those with the NeuroImmune disease of ME/CFS.

> >

> > Katrina

> >

> >

>

>

> I completely agree that this is a change in policy and I am very

> disappointed in the direction this list is headed.

>

> This is a medical treatment board, the ONLY one there is. Why can't

> others have their discussions on the many boards that discuss this

> and leave this one alone.

>

> There is no other place to discuss medical treatments for ME/CFS.

>

> This is not a board for depression although some of us deal with

> depression.

>

> This is not a board for support issues although some of us have a

> lot of drama in our lives (I for one do not but others have no

> choice).

>

> This is not a board for cancer although some of us have dealt with

> it and face it in the future.

>

> Why is everyone trying to change the nature and purpose of this

> group? It is not that you are not welcome, but if the list does not

> suit your purposes, then feel free to leave (said nicely), but

> please don't try to change the list to suit your purposes (again

> said nicely).

>

> Really, we need to get back to EXPERIMENTAL, MEDICAL treatments and

> leave the politics on another board.

>

> Marti

>

[Guest guest]

Thank you, this is expresses exactly how I feel! Please let's get

back to the posting of ideas instead of judgements.

Lynn

> > >

> > >

> > >

> > > To not do so now, is not demeaning to those giving testimony,

it

> > is a CHANGE of policy, the original intent of this list, and the

> > interests of those with the NeuroImmune disease of ME/CFS.

> > >

> > > Katrina

> > >

> > >

> >

> >

> > I completely agree that this is a change in policy and I am very

> > disappointed in the direction this list is headed.

> >

> > This is a medical treatment board, the ONLY one there is. Why

can't

> > others have their discussions on the many boards that discuss

this

> > and leave this one alone.

> >

> > There is no other place to discuss medical treatments for ME/CFS.

> >

> > This is not a board for depression although some of us deal with

> > depression.

> >

> > This is not a board for support issues although some of us have a

> > lot of drama in our lives (I for one do not but others have no

> > choice).

> >

> > This is not a board for cancer although some of us have dealt

with

> > it and face it in the future.

> >

> > Why is everyone trying to change the nature and purpose of this

> > group? It is not that you are not welcome, but if the list does

not

> > suit your purposes, then feel free to leave (said nicely), but

> > please don't try to change the list to suit your purposes (again

> > said nicely).

> >

> > Really, we need to get back to EXPERIMENTAL, MEDICAL treatments

and

> > leave the politics on another board.

> >

> > Marti

> >

>