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

[Guest guest]

,

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

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. 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 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.

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

Katrina

> >

> >

> > ,

> >

> > There are several different issues here:

> >

> > A) Opinion of the importance of the Rich/Yasko program or if it is cause and

cure

> >

> > Opinion about it dominating this list.

> >

> > C) Reasonableness and respect used on these issues.

> >

> > These should have been seperate issues.

> >

> > People have been asking perfectly reasonable questions about this plan for

several weeks. Some Yasko people were put on warning/moderation weeks ago for

being abusive, unhelpful and not posting their *treatments*, on this *treatment*

list.

> >

> > Several people got very nasty backchannel mail....some who did not report it

and some did.

> >

> > There was valid questioning of several points on Yasko, including correction

of false statements, or that it is " proven " , and questioning it being touted as

cause and cure when no one has been cited who is in remission from it...and

barely anyone on it at all and only one feeling better from it.

> > This has always been questioned vehemently on this list.

> >

> > People have been visciously attacked on and off list for questioning either

the plan itself or it's dominance here. They have attempted to explain the

context of their concerns....all of which have been mocked, they and their

illness psychologised...*knowingly*, the nastiest blow to a PWC, taunted for

their cognitive deficits and perceived lack of income. ANd now you pronounce to

someone she has no argument, but only lies and manipulation??!! Has anyone

looked in the mirror lately?

> >

> > Others too have said they don't even want to know or care what is making

people sick and overloaded by the complexity, length and volume of the posts.

> > Yasko proponents have not only expressed no concern that people are skipping

whole digests of posts or leaving the list, but have actually ordered them to do

so.(to some of the longest term members).

> >

> > There are significant numbers of people who are not interested in this

topic. There are alot of others who are/WERE very interested, but in a full

format of it's own. And/or full discussion of other theories/treatments here, a

number of which have been mocked or dismissed much more swiftly than this one.

> >

> > There are others who are saying nothing, as it is clear what happens to

people who speak out...a very bullying, intimidating environment, especially to

the most vulnerable.

> > It is not true that everyone is as fragile as others...this varies widely in

this group and a committment has been made to be considerate of the most

extreme. Instead people's limitations have been mocked and dismissed.

> >

> > THere are plenty of people, and volume of information for a Yasko group of

it's own. Especially since the volume and discussions will grow considerably.

And messages are at over 100 a day now.

> >

> > It is impossible to declare that most want this topic dominating.

> >

> > Are you prepared for every other treatment modality, for which no one here

has been treated, or helped, and no one by a CFS Specialist, to take up hundreds

of posts a week...in the spirit of fairness?

> >

> > WHat should have been 2 separate issues have merged into one horrid

controversy...that alone calls the topic into question.

> >

> > The exchanges here, in this crowded atmosphere have caused this issue to be

far more polarized than it needed to be.

> > very very sad.

> >

> > Katrina

>