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

July 30, 2008

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.

I use the terms severe, late-stage and end-stage separately. I am late stage,

(23 years), w/many complications, injuries and organ damage. But I do not know

if I am " end-stage " , because that means dying, and I am still alive. And I am

not the most severe, or as impaired and bedridden as in " earlier " stages. (due

to multiple experiments and treatments and/or fate).

Some who have been the most severe, do improve for part of their lives...we

don't yet know about later for many still here, but I believe and appreciate

Betty Dowset regarding late stage/organ damage, etc..

Katrina

1985

Ex-Cheney patient

>

> Hi , Judy, I can be a bit blunt at times! It is possible that if you have a

> CFIDS diagnosis, that you may or may not actually have ME as strictly and

> traditionally defined by researchers who have been at it the longest…20+

> years at least. I would say that the quote below, from Dr. Betty Dowsett,

> one of the ME researchers who has the most experience, applies to the most

> severe cases - the totally bedbound on an ongoing basis, who can tolerate no

> sound nor light nor even a bed bath much of the time. This would be the most

> severe group, the worst 10% on the Ability Scale. (I'm at about 25%

> 0verall).

>

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