What is end-stage? Was: Re: CFS Patients Benefit From Cognitive Behavior Therapy

[Guest guest]

Hi. Can you please describe " end-stage ME " ? First I've heard of it in the10

1/2 years suffering from CFIDS.

Thanks, Judy

Re: CFS Patients Benefit From Cognitive Behavior Therapy

Posted by: " J. Catchpole " aylwin1@... elfinhorse

Sun Jul 27, 2008 11:33 am (PDT)

Oh dear, how could you even post this, knowing what a crock it all is.and

who funded that " study " , I'd like to know? People are completely

incapacitated & some dying but only offered CBT as treatment!!! Just 'cuz

it's on " Science Daily " doesn't make it true! This is an insult to the

memory of Sophia Mirza, Mike Dessin who is in torture from end-stage ME, and

all the others who have fallen. Aylwin

[Guest guest]

Katrina, very well said altogether. And, quite correct about the difference

between severe, late stage (me too, and progressed) & end stage. But, I do

think it is the more severe folks who do progress to the late and end

stages. Just my opinion! Aylwin xox

_____

Today, World-wide, there are actual ME-itis patients living under various

diagnoses...-CFS, CFIDS, ME. And with varying knowledge of their own disease

and it's history.

There are also non-ME-itis patients living under *each* term, with varied

and often erroneous information about ME.

Even the best websites often have some very incorrect

information.-..especially about US history. (The origins of the term

" CFIDS " , and many who use it, is a great example). This is best explained in

Osler's Web, & by US patients, or Doctors, *present* at that time.

[Guest guest]

having been a CFIDS survivor for over 31 yrs. I would rather do (overdo) more

things and have a shorter life than being bedridden and live longer. it's all

about the quality of life. I will rest when I am dead.   (LOL)   diane

I forgot to mention that in 2005, I was preparing to " get my affairs in order " .

Even before Dr Cheney told me I was a sinking ship and at risk for sudden death.

And that the very things my body and I do to keep me upright are causing more

damage (along with *thinking*, btw)..

I pulled out of that particular time, with his recommndations, but still do

damaging things to remain upright, which may be shortening my life further, and

again I think of getting my affairs in order...

I can no longer afford many of the things that have helped me over the

years....nor the peaceful and assisted life that can carry a better prognosis.