Yasko-Re: sleep study - amytripiline - other suggestions for stage 3/4 slee

[Guest guest]

On Sep 4, 2006, at 7:39 PM, kattemayo wrote:

> About money...I see no conclusion at all. People with and without

> it are interested;

> with and without it uninterested; with and without it, interested

> on it's own list.

>

> On the other hand, some people have thrown raging fits on this list

> about CFS test/Doctors' charges, OR have happily paid them to be

> seen, OR have treated and learned considerably from those who

> shared, OR have died with ME/CFS, never having seen a knowlegable

> doctor at all, or even another patient.

I think that's the point here. I've got the money -- but I want to

spend it wisely, on stuff that's likely to do me good.

And, by the same token, I hope sharing my experiences can be of value

to people who haven't been able to risk the funds. Those of us who

can afford to take flyers like Yasko or FFC or flying out to see

Cheney are the guinea pigs for the rest of the group. If several of

us put ourselves out there and crash and burn on something, the

others save money in the long run, because they'll know not to waste

their precious and hard-won dollars. Likewise, if we take those

flyers and consistently have good outcomes, those who have much more

to lose can make the investment with far more confidence in their

likely success.

I think this group has tremendous potential to save all of its

members astounding quantities of time, energy, and money, simply by

sharing what we know about the various treatments available. Given

that CFS treatments are notorious for helping some groups and being

useless or worse for others, it's especially good to find people

whose disease process seems to match yours, and see how they fared.

And it seems most of these experiments have little nuances, tips and

tricks, stuff that you need to know going in that can optimize the

effects and/or increase comfort. ( " Wait! Don't give up until you've

tried it THIS way... " ) Those can sometimes make all the difference.

I'd be sad if there were people who resented me because I've got the

resources to run all this to ground -- or felt like I was bragging

because I could afford something they couldn't. That's not my

intention here at all. Like a lot of long-timers with disease, I've

just been down a lot of interesting roads, and hope somebody can get

some benefit out of what I've seen and learned. There's no reason we

should all have to spend that money if we don't have to.

Sara

[Guest guest]

Right on Sara all power to ya. This is a marvellous forum for sharing and

discussion. I sure don't begrudge you your capacity to shop around - I sure

would if I could, and if something turns up, then wacko - it might be just the

key to help someone else.

Re: Yasko-Re: sleep study - amytripiline - other

suggestions for stage 3/4 slee

On Sep 4, 2006, at 7:39 PM, kattemayo wrote:

> About money...I see no conclusion at all. People with and without

> it are interested;

> with and without it uninterested; with and without it, interested

> on it's own list.

>

> On the other hand, some people have thrown raging fits on this list

> about CFS test/Doctors' charges, OR have happily paid them to be

> seen, OR have treated and learned considerably from those who

> shared, OR have died with ME/CFS, never having seen a knowlegable

> doctor at all, or even another patient.

I think that's the point here. I've got the money -- but I want to

spend it wisely, on stuff that's likely to do me good.

And, by the same token, I hope sharing my experiences can be of value

to people who haven't been able to risk the funds. Those of us who

can afford to take flyers like Yasko or FFC or flying out to see

Cheney are the guinea pigs for the rest of the group. If several of

us put ourselves out there and crash and burn on something, the

others save money in the long run, because they'll know not to waste

their precious and hard-won dollars. Likewise, if we take those

flyers and consistently have good outcomes, those who have much more

to lose can make the investment with far more confidence in their

likely success.

I think this group has tremendous potential to save all of its

members astounding quantities of time, energy, and money, simply by

sharing what we know about the various treatments available. Given

that CFS treatments are notorious for helping some groups and being

useless or worse for others, it's especially good to find people

whose disease process seems to match yours, and see how they fared.

And it seems most of these experiments have little nuances, tips and

tricks, stuff that you need to know going in that can optimize the

effects and/or increase comfort. ( " Wait! Don't give up until you've

tried it THIS way... " ) Those can sometimes make all the difference.

I'd be sad if there were people who resented me because I've got the

resources to run all this to ground -- or felt like I was bragging

because I could afford something they couldn't. That's not my

intention here at all. Like a lot of long-timers with disease, I've

just been down a lot of interesting roads, and hope somebody can get

some benefit out of what I've seen and learned. There's no reason we

should all have to spend that money if we don't have to.

Sara

[Guest guest]

Hi, Katrina.

" kattemayo " <kattemayo@...> wrote:

>

>

> ,

>

> I'm not sure what you're talking about. I wrote that at 7:39 this morning in

response to you and whatever subject line yours was. I just hit reply.

***I think this was a key point Dan was making and I agree. Mine was a response

post and so was yours, but that isn't an excuse enough for post

responders(including myself) to not put in Yasko in the heading when it is the

topic or key part of a topic being discussed.

I haven't mentioned this topic since Ken's announcement.

***You said Yasko three or four times in the body of your response post to me

without noting Yasko in the heading. It's there you'll see if you review what

you wrote.

> I don't know what you are referring to about Ken and Money either.

> People wrote exactly what their concerns were.

>

> About money...I see no conclusion at all.

***I disagree. It seems to be exactly the more key issue driving some to

hostility, frustration or whatever one might call it.

People with and without it are interested;

> with and without it uninterested; with and without it, interested on it's own

list.

***Some are, I agree.

> On the other hand, some people have thrown raging fits on this list about CFS

test/Doctors' charges, OR have happily paid them to be seen, OR have treated and

learned considerably from those who shared, OR have died with ME/CFS, never

having seen a knowlegable doctor at all, or even another patient.

>

> I have learned without much...also have seen the high-priced and been on

expensive protocols.

> (now, for instance)

> My view of a theory/Doctor did not change based on which place I was in.

***Nice to hear it.

> I hope the Yasko list will be wonderful, for those trying it, and those not.

***This is point of yours is the most valuable of them all, IMO. Maybe those

struggling more financially can barrow a page from Breckenridge who I

think cleverly and appropriately, given his most limited resources as a young

man with CFS, learned as much as he could in the wake of those paying for tests

and going for expensive docs/ treatments, to see what panned out as effective

that he suspected might fit his case, before going for any of it.

***His method is quite a valid tact to take if one must in order to stay

up-to-date on treatments and not

give-up on making substantial improvements in ones health. Anyway, thanks for

concluding on a positive note.

> Katrina

***

" davidhall2020 " <davidhall@> wrote:

....There are ways around some of the expensive tests suggested with the Yasko

program, but those ways can be better addressed in new threads when a PWC needs

to ask...