Re: The International CFS/ME Society Names Top Doctors

[Guest guest]

I was surprised to see Dr.Cheney so far down the list. Wonder why he's

so far down. Unfortunately I've never had the opportunity to see any

of these doctors so can't really speak for or against any of them.

Has anyone been to see Dr. Natelson in Newark?

>

> This was an email announcementI received on Wednesday.

>

> The International CFS / ME society has compiled votes from patients

> and clinicians for the TOP CFS Doctors ; Clinicians and Researchers

>

> 1 Enlander MD, New York

> 2 Bell MD, Lyndonville NY

> 3 Klimas MD Miami

> 4 Shepherd MD London

> 5 Komaroff MD Boston

> 6 Dr. Natelson Newark NJ.

> 7 Kerr MD London

> 8 Lapp MD Charlotte NC

> 9 Dr Ros Vallings Auckland New Zealand

> 10 Levine MD Washington

> 11 Cheney MD N Carolina

> 12 Jos van der Meer MD Holland

> 13 Dr , West Tilbury England

> 14 Dr. Teruo Kitani Osaka Japan

>

> Jane

>

[Guest guest]

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.

> >

> > This was an email announcementI received on Wednesday.

> >

> > The International CFS / ME society has compiled votes from patients

> > and clinicians for the TOP CFS Doctors ; Clinicians and Researchers

> >

> > 1 Enlander MD, New York

> > 2 Bell MD, Lyndonville NY

> > 3 Klimas MD Miami

> > 4 Shepherd MD London

> > 5 Komaroff MD Boston

> > 6 Dr. Natelson Newark NJ.

> > 7 Kerr MD London

> > 8 Lapp MD Charlotte NC

> > 9 Dr Ros Vallings Auckland New Zealand

> > 10 Levine MD Washington

> > 11 Cheney MD N Carolina

> > 12 Jos van der Meer MD Holland

> > 13 Dr , West Tilbury England

> > 14 Dr. Teruo Kitani Osaka Japan

> >

> > Jane

> >

>

[Guest guest]

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

paul

> > >

> > > This was an email announcementI received on Wednesday.

> > >

> > > The International CFS / ME society has compiled votes from

patients

> > > and clinicians for the TOP CFS Doctors ; Clinicians and

Researchers

> > >

> > > 1 Enlander MD, New York

> > > 2 Bell MD, Lyndonville NY

> > > 3 Klimas MD Miami

> > > 4 Shepherd MD London

> > > 5 Komaroff MD Boston

> > > 6 Dr. Natelson Newark NJ.

> > > 7 Kerr MD London

> > > 8 Lapp MD Charlotte NC

> > > 9 Dr Ros Vallings Auckland New Zealand

> > > 10 Levine MD Washington

> > > 11 Cheney MD N Carolina

> > > 12 Jos van der Meer MD Holland

> > > 13 Dr , West Tilbury England

> > > 14 Dr. Teruo Kitani Osaka Japan

> > >

> > > Jane

> > >

> >

>

[Guest guest]

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]

Rich V. is not an MD. The stunning omission from this list is Dr. Kenny

DeMeirleir.

a Carnes

[Guest guest]

In a message dated 7/14/2006 8:06:36 A.M. Pacific Daylight Time,

kdrbrill@... writes:

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

recovered

Hi I just have to write and say that I personally know of someone who was

very ill and with cheneys help went back to work full time. for obvious

reasons, I am not going to give the name of this patient. he definitely

credited

cheney with helping him very much though.

[Guest guest]

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]

Bob,

You will find that there are staunch supporters and severe critics for most of

our researchers and Specialists...and organizations. The reasons for critique

vary dramatically, and may be about specific, not all, of their work, or about

how they disseminate it.

This critique was not of Dr. Meirleir's work, but that he failed to publicise

crucial findings...and the belief that it has severely blocked progress, as

patients have died or worsened. Some have questioned other financial conflicts,

also, (regarding his lab and Ampligen?).

Even some of the critics do have respect for much of his CFS work and findings.

I found fascinating when he said he had discovered parts of the immune system

that are " chopped up " in pieces.

Often, critiques of certain aspects turn into rumors or total trashing of a

Researcher's or Organizations' entire work. Sometimes the critiques are

well-researched and well-founded...

other times they are complete mis-representation, hearsay, or based on personal

vendettas....stated as " the truth " .

About this critque, some agree with the misfortune of his not going more public,

(and/or as unethical) ,but do not agree with the call for resignation. Etc,

Etc.

The NCF is a patient, all-volunteer Org. that does patient advocacy and funds

private research, including on HHV6 and beginnings of Dr. Hokama's at the

University of Hawaii...in which he found an epitope in CFS patients' blood

(including mine) , which is mere molecules from that in Acute Ciguatera

Poisening. HE believes this toxin is the result of a pathogen in the body, and

continues the testing of patients and his work...(assisted by a large grant from

the NIH), to find solution to the lipid disease that results, and the origin of

the poison.

AN ex-Board member and others, are unhappy with the NCF, while other patients

remain very hopeful because of their work.

So, you will always find multiple sides and opinions on most everything on this

list...and in ME/CFS world.

I'm trying to find the origins of this poll/list, to understand it better.

BW,

Katrina

> >

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

> > DeMeirleir.

> >

>

>

>

[Guest guest]

>

> Rich V. is not an MD.

Right! Doctors - not researchers.

The stunning omission from this list is Dr. Kenny

> DeMeirleir.

There is probably a reason for that - it's called politics.

>

>

>

> a Carnes

>

>

>

>

[Guest guest]

On Jul 14, 2006, at 8:01 AM, kdrbrill wrote:

> 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...

Yeah. I'm not at all happy that Teitelbaum is now the medical

director of the FFC. I don't know what all he's been up to in the

past decade, but my impression has been that he's spent a lot of time

barking up wrong trees. He got out front early -- and then got stuck

there while others continued to move ahead.

I think most of those doctors would, if they're at all honest, concur

with Cheney that few or none of their patients have recovered. (In

fact, I think that most people who recover 100% were probably

misdiagnosed in the first place -- which means that someone who's

good at accurately diagnosing CFS isn't going to have very many

recoveries, by definition.) I'm one of the more recovered people

here, but I still need about three " quiet days " a week. I do get more

done on those days than I used to (I don't pass out, trance out, or

sleep; instead, I'm reading, writing, puttering), but I'm also not

fit for a 40-hour-a-week job. And the post-exertional malaise is, if

anything, getting worse, probably due to an accelerating heart

situation I'm trying to get attention for. (Trying again Monday. Wish

me luck.)

Seventy percent of us will get better. Some chunk of that group will

get back to a place where they can work, and have something like a

normal life. One in several hundred may be able to return to active

athletics. So I don't think full recovery should be the gold

standard for CFS docs. Not only is it quite possibly an impossible

standard; but by putting a value on it, we may be encouraging doctors

to exaggerate their capabilities -- something that serves neither

them nor us.

I'm more comfortable with the claim that the FFC makes, which is that

(IIRC) something like 80% of their patients see " significant

improvement. " I'll believe that long before I'll believe anybody who

claims outright that they can " cure " me. If such a cure was

available, believe me, we'd all be on it!

Sara

[Guest guest]

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

recovered.<<<<

I don't know if he says this, but Dr. , another of the longest at it...

does.

I can see why you'd say this, but I don't agree with your logic.

A person might be a top/favorite MS or ALS or Huntington's Specialist and not

have *cured* their patients.

Dr. Cheney also has some of the most severe patients, and many long term/complex

before they see him.

When you say PWCs have recovered...again...what definition are you using, how

severe, how long, etc.

Recovered meaning 100% cured, or back to work, or greatly improved, with

limitations?

Katrina

> > >

> > > This was an email announcementI received on Wednesday.

> > >

> > > The International CFS / ME society has compiled votes from patients

> > > and clinicians for the TOP CFS Doctors ; Clinicians and Researchers

> > >

> > > 1 Enlander MD, New York

> > > 2 Bell MD, Lyndonville NY

> > > 3 Klimas MD Miami

> > > 4 Shepherd MD London

> > > 5 Komaroff MD Boston

> > > 6 Dr. Natelson Newark NJ.

> > > 7 Kerr MD London

> > > 8 Lapp MD Charlotte NC

> > > 9 Dr Ros Vallings Auckland New Zealand

> > > 10 Levine MD Washington

> > > 11 Cheney MD N Carolina

> > > 12 Jos van der Meer MD Holland

> > > 13 Dr , West Tilbury England

> > > 14 Dr. Teruo Kitani Osaka Japan

> > >

> > > Jane

> > >

> >

>

[Guest guest]

Bob~

(Are you serious you don't know who that crew is?) You certainly got their

number:MESSED UP! They are bizarre beyond words. You spotted it via their

website: I picked it up before they ever got online. Their printed thing was a

mess, their writing was definitely a mess- and it all correlated with their

thinking, as you might expect. They are generally hate-filled.

The woman, Jill Macgloclin, (sp?), who recently flamed someone here, used to be

a big person there and had a falling out I guess. I do not follow this things

too closely.

I am writing privately because there are one or 2 people here who still approve

of them and no need to start a war over it, although you may have already. They

did, as I understand it, great harm to that doc.

Adrienne

Re: Re: The International CFS/ME Society Names

Top Doctors

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]

I have asked the original poster..will tell you what I find out.

K

> >

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

> >

> > paul

>

>

>

>

>

>

>

[Guest guest]

Wishing you luck.

As I am proceeding with the very modest physical therapy program I am doing, it

is dawning on me that I probably have a heart problem. My muscles ARE getting

stronger through exercise, in a way SOME of me is doing better but it does wipe

me out a lot. It is like I am trying to go without having hauled up the anchor,

or with the emergency brake on.

I will be going for an echocardiogram sooner or later. To start with.

Adrienne

Re: Re: The International CFS/ME Society Names

Top Doctors

On Jul 14, 2006, at 8:01 AM, kdrbrill wrote:

> 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...

Yeah. I'm not at all happy that Teitelbaum is now the medical

director of the FFC. I don't know what all he's been up to in the

past decade, but my impression has been that he's spent a lot of time

barking up wrong trees. He got out front early -- and then got stuck

there while others continued to move ahead.

I think most of those doctors would, if they're at all honest, concur

with Cheney that few or none of their patients have recovered. (In

fact, I think that most people who recover 100% were probably

misdiagnosed in the first place -- which means that someone who's

good at accurately diagnosing CFS isn't going to have very many

recoveries, by definition.) I'm one of the more recovered people

here, but I still need about three " quiet days " a week. I do get more

done on those days than I used to (I don't pass out, trance out, or

sleep; instead, I'm reading, writing, puttering), but I'm also not

fit for a 40-hour-a-week job. And the post-exertional malaise is, if

anything, getting worse, probably due to an accelerating heart

situation I'm trying to get attention for. (Trying again Monday. Wish

me luck.)

Seventy percent of us will get better. Some chunk of that group will

get back to a place where they can work, and have something like a

normal life. One in several hundred may be able to return to active

athletics. So I don't think full recovery should be the gold

standard for CFS docs. Not only is it quite possibly an impossible

standard; but by putting a value on it, we may be encouraging doctors

to exaggerate their capabilities -- something that serves neither

them nor us.

I'm more comfortable with the claim that the FFC makes, which is that

(IIRC) something like 80% of their patients see " significant

improvement. " I'll believe that long before I'll believe anybody who

claims outright that they can " cure " me. If such a cure was

available, believe me, we'd all be on it!

Sara

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Adrienne,

I just wonder why you feel you have a heart problem. Are you having

particular symptoms that suggest this, other than what you stated below?

Ballady

>

> Wishing you luck.

> As I am proceeding with the very modest physical therapy program I

am doing, it is dawning on me that I probably have a heart problem. My

muscles ARE getting stronger through exercise, in a way SOME of me is

doing better but it does wipe me out a lot. It is like I am trying to

go without having hauled up the anchor, or with the emergency brake on.

> I will be going for an echocardiogram sooner or later. To start with.

> Adrienne

> ----- Original Message -----

[Guest guest]

I did not flame anyone and have no idea what/who the International CFS/ME

Society is, though we sure could use a credible competent org. Dr.

DeMeirlier is very well respected, but it said that a vote was taken so

suppose it is surprising that he wasn't included.

I do not think it is the NCF unless they changed their name due to, well,

their image problems, but do not follow them at all. I was with them for a

while - thought the all volunteer patient run thing was worth a shot and

well conceived initially as an alternative to the CAA with their ties to the

gov't -- and plummeting support.

While it sounded like a noble concept and think many accordingly gave them a

pass on many things, but have mainly come to agree with your assessment on

this front. I don't think there is a Board or any committees who run things

as they claim. People have asked repeatedly and they get some wild excuse or

attacked for asking or they just make things (and people) up. Most do not

like dishonesty and games and think most have figured that it is just not

worth bothering with.

Jill

______________________

Message #101746 of 101755 < Prev | Next >

Re: Re: The International CFS/ME Society Names Top

Doctors

Bob~

(Are you serious you don't know who that crew is?) You certainly got their

number: MESSED UP! They are bizarre beyond words. You spotted it via their

website: I picked it up before they ever got online. Their printed thing was

a mess, their writing was definitely a mess- and it all correlated with

their thinking, as you might expect. They are generally hate-filled.

The woman, Jill Macgloclin, (sp?), who recently flamed someone here, used to

be a big person there and had a falling out I guess. I do not follow this

things too closely.

I am writing privately because there are one or 2 people here who still

approve of them and no need to start a war over it, although you may have

already. They did, as I understand it, great harm to that doc. Adrienne

Re: Re: The International CFS/ME Society Names

Top Doctors

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]

" kattemayo " wrote:

> When you say PWCs have recovered...again...what definition are you

using, how severe, how long, etc.

> Recovered meaning 100% cured, or back to work, or greatly

improved, with limitations?

> Katrina

Exactly.

When the " Yuppie Flu " went through, huge numbers of people caught

it, but most recovered. Then we started hearing about people who

just never did and started talking to each other about how long

this " flu " was lasting. For most people, it went on for twice as

long as a normal flu - about 4 weeks. But when the duration

exceeded six weeks, then we started getting worried.

It looked like six weeks was the " cut-off " for recovery.

Anyone who went beyond that had a good chance of becoming a chronic

case.

It was those people who came out of the " Yuppie Flu " early that had

the precursor condition that one could describe as " Chronic Fatigue "

which could last for months or years - but was just a pale shadow of

CFS. Neither of them called the CDC on account of these fatigue

cases - they just weren't scary enough.

It was the people who couldn't stand up, feed themselves, read, see

think, pump blood, that looked like the living dead - that fell

apart in clusters that was scary enough to call in the " big guns " .

Those people who went on to total devastation were the ones used in

the definition of " Chronic Fatigue Syndrome " .

Dr Cheney and Dr did not consider these lesser or recovery

cases to be part of the chronic condition and do not include them in

their statistics.

That's why you'll see other CFS doctors claiming 60-95% recovery

rates. They don't differentiate between CF and CFS.

Their CF patients would likely have improved anyway - even without

their therapies and excessive " specialist " charges.

And before anybody jumps on me and blames the name for causing this

problem, it does no good to tell them " Myalgic Encephalomylitis " or

anything else. Dr C and P's concept of differentiation was

symptom, pattern, AND immune based. When those other " includers "

fail to take the entire picture into account, they had no means of

differentiation, so they STILL throw everyone into the same basket.

-

[Guest guest]

I have a rather strong suspicion that doctors whose patients do not

return to them assume that those patients are cured, and, rather than

inquire how they have failed the patient, they egotistically put the

patient in their 'cured' column. The reality of course is that 99.9%

of these patients, if not more, have left this doctor in disgust that

they were getting nowhere with his (or her) treatment.

[Guest guest]

Oh, yes. I have had coronary symptoms on and off.

Although it returned to normal size eventually, to start with, I had an

enlarged heart not directly related to whatever it is we are calling our

disease. That was related to a huge fibroid uterine tumor and when that was

surgically removed the size diminished.

But w. regard to CFS; whenever I returned from a lengthy crash, at least 3

times I'd say, and started doing more I would have heart symptoms-palpitations,

breathlessness, chest pain. They would eventually resolve.

Most recently I had a full-blown angina attack after returning from a week at

near- sea level to mile high altitude. That resolved, too, and I had other

health issues on my agenda- learning to use the brain balancing supplements , so

I ignored the heart stuff, even though my medical doc prescribed an echo.

Then, after supplements came physical therapy, and now that is pointing me

back to heart.

Adrienne,

I just wonder why you feel you have a heart problem. Are you having

particular symptoms that suggest this, other than what you stated below?

Ballady

>

> Wishing you luck.

> As I am proceeding with the very modest physical therapy program I

am doing, it is dawning on me that I probably have a heart problem. My

muscles ARE getting stronger through exercise, in a way SOME of me is

doing better but it does wipe me out a lot. It is like I am trying to

go without having hauled up the anchor, or with the emergency brake on.

> I will be going for an echocardiogram sooner or later. To start with.

> Adrienne

> ----- Original Message -----

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Has anyone on this list been to see Dr. Klimas? What's the protocol like?

> > >

> > > This was an email announcementI received on Wednesday.

> > >

> > > The International CFS / ME society has compiled votes from patients

> > > and clinicians for the TOP CFS Doctors ; Clinicians and Researchers

> > >

> > > 1 Enlander MD, New York

> > > 2 Bell MD, Lyndonville NY

> > > 3 Klimas MD Miami

> > > 4 Shepherd MD London

> > > 5 Komaroff MD Boston

> > > 6 Dr. Natelson Newark NJ.

> > > 7 Kerr MD London

> > > 8 Lapp MD Charlotte NC

> > > 9 Dr Ros Vallings Auckland New Zealand

> > > 10 Levine MD Washington

> > > 11 Cheney MD N Carolina

> > > 12 Jos van der Meer MD Holland

> > > 13 Dr , West Tilbury England

> > > 14 Dr. Teruo Kitani Osaka Japan

> > >

> > > Jane

> > >

> >

>

[Guest guest]

" H. Wish " wrote:

> I have a rather strong suspicion that doctors whose patients do

not return to them assume that those patients are cured, and,

rather than inquire how they have failed the patient, they

egotistically put the patient in their 'cured' column. The reality

of course is that 99.9% of these patients, if not more, have left

this doctor in disgust that they were getting nowhere with his (or

her) treatment.

>

Hah! Yes. Perfect. Insightful!

I remember several sufferers finding out that doctors referred to

them as success stories after they abandoned their useless therapy

as futile exercises in financial incontinence.

And there is simply no stopping doctors from tending toward this!

Although when I called Dr and asked him why he was

claiming a 65% success rate when his skiing buddy; Dr was

getting nowhere near that result - the claim of " percentages

recovered " disappeared from his website.

-

[Guest guest]

Okay, thanks for clarifying Adrienne. Wish you all the best.

Ballady

> >

> > Wishing you luck.

> > As I am proceeding with the very modest physical therapy program I

> am doing, it is dawning on me that I probably have a heart problem. My

> muscles ARE getting stronger through exercise, in a way SOME of me is

> doing better but it does wipe me out a lot. It is like I am trying to

> go without having hauled up the anchor, or with the emergency

brake on.

> > I will be going for an echocardiogram sooner or later. To start

with.

> > Adrienne

> > ----- Original Message -----

>

>

>

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested in

any treatment discussed here, please consult your doctor.

>

[Guest guest]

***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]

Sooner or later anyone who tries to help us cfs patients gets smeared.

DeMeirleir is no exception. DeMeirleir was a member of the AACFS conference

and was not listened to by them at all. I think this is because he has

documented the massive numbers of his cfs patients who have mycoplasma

infections. The US medical establishment continues to deny that cfs and fms

are infectious diseases.

It is sad that the National CFIDS Foundation also decided to slam DeMeirleir

because he filed a patent on STAT 1 research he did. (Um, any doctor doing

research who wants the funding to continue research needs to file a patent

or two. It would be STUPID not to. But that is another story.)

Jill McLaughlin has now also been a victim of " us. " So has with

his stand regarding the role of mold in our illnesses. I've taken a few

slams myself. It is not an easy world to deal with, probably because this

disease, whatever it is, affects our central nervous system and tends to

make us crazy.

Yikes! Please be nice if you reply on this. LOL

a

[Guest guest]

On Jul 15, 2006, at 1:04 PM, cort johnson wrote:

> I do see they compiled some votes - so I went a little far there. I

> would like to know who and how many etc. and what they were voting

> on - best CFS physician. Natelson by the way is a VERY

> conservative physician - he doesnt believe in alternative

> treatments - he in fact doesnt use very many treatments - at least

> according to the book he wrote several years ago. Yet somehow he

> managed to outscore Cheney, who for whatever his faults, is

> absolutely at the forefront of developing new treatments for CFS.

> And where is Teitlebaum - who does have a very extensive protocol

> and is the ONLY physician in this group to have actually published

> a successful trial using it - and who developed that computerized

> system that allows CFS patients with little money access to medical

> advice. Where is he? ANd how did Bell get so high? Based on my

> limited experience I would have put Cheney, Teitlebaum and De

> Meirleir on top. I dont know Enlander.

Enlander's in NYC (and was, once upon a time, on this list). He's

doing some leading-edge research (NIH?) with Dr. Kerr in England.

He's got an excellent -- almost legendary --rep among the people on

this list.

Sara