Re: The International CFS/ME Society Names Top Doctors

[Guest guest]

I wondered that same thing, i've never heard of them before.

Re: The International CFS/ME Society Names Top

Doctors

Hey, , that was a really kind thing to say! Thanks!

I gather that the list is limited to licensed clinicians who treat

PWCs. I think they assembled a pretty good list. Has anyone ever

heard of this organization? I haven't, and I couldn't find it on

Google, either. I wonder if it's for real, or if an individual

somewhere compiled this list and claimed it was from an international

organization. Anybody know?

Rich

>

> I am disappointed that Rich isn't on this list.

>

> paul

[Guest guest]

It is rather hypocritical of them to slam DeMeirleir for patenting his

info/protocol, while

praising Dr. Robbins, who has also (I believe) is patenting his work.

And while they're often quite bitter and negative in their newsletters*, I do

appreciate the

work they've done, and hope that at the very least, they've helped find an

important piece

of the puzzle in this complex disease.

d.

*They're always slamming the CDC (perhaps rightfully so), yet use the CDC's grim

recovery

statistics, reminding people over and over, that only a tiny percentage of PWC's

recover.

> > >

> > > The stunning omission from this list is Dr. Kenny

> > > DeMeirleir.

> > >

> >

> >

> >

[Guest guest]

Have been to many conferences and meetings and DeMerlier is overall very

well liked and respected in his field and by patients he has treated. It is

just - them. The NCF has just blown their credibility in general and most

cannot take them seriously.

But if I missed something I apologize but does anyone know who/what this

International CFS/ME Society is?

Jill

________________________

Sat Jul 15, 2006 3:53 pm

" cortttt " <cortttt@...>

cortttt

The International CFS/ME Society Names Top Doctors   Message List  

Reply | Forward Message #101798 of 101844

Re: The International CFS/ME Society Names Top Doctors

***I know you dont know the story here but its really ludicrous in my

opinion. Given the many people the NCF attacks I doubt that they are

universally liked as well. They certainly permanently damaged their

credibility with me with that one.

_________________________

In , " bob niederman " <bobn1955@...>

wrote:

>

> DeMeirleir is not universally liked. See:

>

> http://www.ncf-net.org/forum/CallForResignation.htm

>

> * " NCF Board Calls for Researcher's Resignation "

>

> This outfit alleges that DeMeirleir delayed publication of information while

> patenting it. I don;t know if it's true or not, but from what I've seen

> DeMeirleir is state of the art on CFS. * On the other hand I don;t know who

> this outfit is and there homepages is kinda messed up from webpage point of

> view.....

>

>

> On 7/14/06, a Carnes <pj7@...> wrote:

> >

> > The stunning omission from this list is Dr. Kenny

> > DeMeirleir.

> >

>

>

>

[Guest guest]

A few people emailed me questioning who the Society is; how votes were

taken and so on. I was emailed the list (as it appeared) by an

individual. I did email that person back so as to find out more about

the process and how the list was compiled. another question was

information as to how to reach doctors on the list.

I do see Dr Enlander (have been a patient since 12/02) and there does

seem to be a high rate of remission; he never promises complete 'cure'

and never has. I do know people who are patients who originally came to

him with ME/CFS and now are working, healthy and only go in for things

not related to ME/CFS (such as a young woman who was there my first

visit for a sprained ankle).

Like probably most of the others on that list if not all, he does as

much research as he is able via participating as a physican in

obtaining blood samples for studies, and on occasion new therapies for

us, his patients.

When I do get an answer, I will certainly post it hopefully with a URL

for their site, if any. (I was not able to find one today via search.)

I'm terribly behind in reading and posting; today is eve of 7/15.

> Perhaps it's because even Cheney admits that " none " of his patients

>have recovered. Not a > good track record for someone so well-known

>and deservedly well-liked in the CFS > community. Believe it or not,

>some PWC's actually do recover -- even if it's 90% -- and > some of

>them are on this list.> Dr. Klimas and Bell seem to have a better

track >record, as do several naturopaths not even

> on the list.

> > Very telling that Teitelbaum isn't even on the list, at least not

>in the top 15...

> > d.

[Guest guest]

SARA,

DO YOU KNOW HIS TREATMENT APPROACH???

Amelia

[Guest guest]

Enlander's treatment approach, and I was not yelling..

[Guest guest]

Ok...maybe, I misunderstood...we do have some mental processing

problems..and I am a computer spaz..did not approach a computer, until late in

my years

and deep into the CFS world...

So, I apologize if I misunderstood,,

[Guest guest]

On Jul 22, 2006, at 11:42 AM, sunscaper53@... wrote:

> SARA,

>

> DO YOU KNOW HIS TREATMENT APPROACH???

" His " who?

And why are you yelling at me?

> Amelia

Sara

[Guest guest]

On Jul 22, 2006, at 12:18 PM, sunscaper53@... wrote:

> Enlander's treatment approach, and I was not yelling..

Internet convention (for the past 25+ years) has been that USING ALL

CAPS IS YELLING. It's considered not quite nice.

And I didn't say anything about Dr. Enlander, not having met the man

nor seen him. So i " m not sure why you're asking me, yelling or not.

Sara