Re: Update on TheFetalCure / Steve Lord

[Guest guest]

Ken, I really wish you'd reconsider the ban on Steve Lord.

I can go to a thousand other lists for the politically correct

approach to CFIDS, where people guard their diagnosis like it's a

membership in a special exclusionary club. I want to learn about

anything that might possibly give me a glimmer of understanding into

this disease. Steve appears to have some interesting conditions, his

immune response for one thing. And a lot of interesting information

and experiences. He's certainly willing to try things. He might sound

crazy or suspect to you, but then I've known truly crazy people who

sound as normal as you do, and they really do harm people.

Please don't turn this into another list where censorship becomes the

issue. Those lists always self destruct, or if they survive, become

completely stagnant.

thanks for listening to my point of view.

penny

> I inquire about his CFIDS experience and he informed me that he has

> had CFIDS - nine times:

> * Never was diagnosised with it by a MD (i.e. no exclusary

testing

> for other conditions).

> * HIS cure often caused a recovery within ONE HOUR of onset.

>

> Given that he is a lawyer, I am agasped that he appears totally

> ignorant of the CDC defintion of what is required to get a CFIDS

> diagnosis. A lawyer asserting he has a condition when he appear to

> be ignorant of the " case law " indicates somethings....

>

> As a result, all message posting privledges have been suspended

> until such time that he can give a reasonable accounting of

himself.

> His large volume of very articulated posts (with a lot of lawyer

> argument styles) in a short time is very atypical for any CFIDS

> person.

[Guest guest]

Thanks Ken for being on top of this and keeping it legit.

ann

Update on TheFetalCure / Steve Lord

> I inquire about his CFIDS experience and he informed me that he has

> had CFIDS - nine times:

> * Never was diagnosised with it by a MD (i.e. no exclusary testing

> for other conditions).

> * HIS cure often caused a recovery within ONE HOUR of onset.

>

> Given that he is a lawyer, I am agasped that he appears totally

> ignorant of the CDC defintion of what is required to get a CFIDS

> diagnosis. A lawyer asserting he has a condition when he appear to

> be ignorant of the " case law " indicates somethings....

>

> As a result, all message posting privledges have been suspended

> until such time that he can give a reasonable accounting of himself.

> His large volume of very articulated posts (with a lot of lawyer

> argument styles) in a short time is very atypical for any CFIDS

> person.

>

>

>

>

> 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]

Am I the only one that got bc BS letters from the fetalcure lawyer himself? I

want this crap TO STOP!!!! Somebody is really having a hey day playing games

with the cfs community. That'll be a

laugh around the board rooms, how he had 900 cfs patients curled up in the fetal

postition with cotton balls in their ears for a cure. What more proof do they

need that cfs patients are PSYCHO!

And a lawyer? What, a govt lawyer? A disability lawyer? I'd sure like to know.

Anybody else receiving unwanted mail from him?

Marcia

ken_lassesen wrote:

> I inquire about his CFIDS experience and he informed me that he has

> had CFIDS - nine times:

> * Never was diagnosised with it by a MD (i.e. no exclusary testing

> for other conditions).

> * HIS cure often caused a recovery within ONE HOUR of onset.

>

> Given that he is a lawyer, I am agasped that he appears totally

> ignorant of the CDC defintion of what is required to get a CFIDS

> diagnosis. A lawyer asserting he has a condition when he appear to

> be ignorant of the " case law " indicates somethings....

>

> As a result, all message posting privledges have been suspended

> until such time that he can give a reasonable accounting of himself.

> His large volume of very articulated posts (with a lot of lawyer

> argument styles) in a short time is very atypical for any CFIDS

> person.

>

>

>

> 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 got one. I think he went to the members list on the

members page and sent one to everyone. Otherwise, I couldn't figure out why

he'd send one to me, because I was one of the people who was highly critical

of his cotton ball theory, and had a very negative reaction to it when I

tried it. But at any rate, I told him what I thought. I'm sure he didn't

really want to hear my opinion.

Incidentally, I've been digging around, trying to figure out if he really is

a lawyer. According to the California Bar Association, he hasn't been

practicing as a lawyer since 1999. And before that he didn't practice as a

lawyer continuously since passing the bar in 1979. He's been put on inactive

status a couple times for not paying his membership fees, and was inactive

between 1985 and 1996 for not paying his membership fees. You have to be an

active member of the California Bar Association in order to practice as a

lawyer in California. I don't know what he's been doing since 1999, but he's

not a practicing lawyer, he's only using the fact that he passed the bar at

one time as a way of making himself look like a legitimate person who should

be taken seriously.

lindaj@...

Re: Update on TheFetalCure / Steve Lord

Anybody else receiving unwanted mail from him?

>

> Marcia

>

[Guest guest]

Penny, if anything, I am guilty of acting TOO slowly. In this case,

before acting I put a poll up asking members wishes (80% wanted the

topic ended) AND a poll on the results obtained.

The evidence indicated no benefit and significant cost to this group.

This disease is multiple illnesses -- so I agree about " a glimmer of

understanding into this disease " . For this family, our understanding

( genetic coagulation defects interacting with occult infections)

lead to successful control (major reduction or full elimination of

symptoms).

At the same time, this disease has spawned a mini-industry of people

selling concepts or products to people desperate for release from

this illness. This list will not become politically correct (at

least not under me) -- i will attempt to keep it pointing into the

scientific method and objective evaluation of treatments -- no

mattter how bizarre... If you look back, you will find that I

support the use of Halle's breathing (I even purchased the book) as

a way of reducing symptomns for some , and possibly cure for a lucky

few. What I asked for is objectiveness and demonstratable evidence

of it being of benefit -- even if it members of this group trying

the experiment themselves (which they did, and reported in the poll

on cotton balls). Once the evidence is in -- if it does not pan out,

it's time to move on.

Ken

> Ken, I really wish you'd reconsider the ban on Steve Lord.

>

> I can go to a thousand other lists for the politically correct

> approach to CFIDS, where people guard their diagnosis like it's a

> membership in a special exclusionary club. I want to learn about

> anything that might possibly give me a glimmer of understanding

into

> this disease. Steve appears to have some interesting conditions,

his

> immune response for one thing. And a lot of interesting

information

> and experiences. He's certainly willing to try things. He might

sound

> crazy or suspect to you, but then I've known truly crazy people

who

> sound as normal as you do, and they really do harm people.

>

> Please don't turn this into another list where censorship becomes

the

> issue. Those lists always self destruct, or if they survive,

become

> completely stagnant.

>

> thanks for listening to my point of view.

>

> penny

>

[Guest guest]

Steve, if you're still reading this list, why are you wasting your

time with a few people with a controversial illness?

If all the fetal cure does is cure colds and flu, you'll get the Nobel

Prize for medecine. Your cure will be one of the great boons to

mankind ever. A cure for common illnesses that is readily available

all over the world at almost no cost.

You should be getting a patent on the treatmennt or at least getting

the story of how you discovered this cure and proved that it worked

copyrighted.

You say you're not interested in fame and fortune? When the guy who

takes credit for your discovery gets the Nobel Prize and is honored at

the White House and is making the talk show circuit I think that you

will care.

Tom

[Guest guest]

Just want you to know that I've gotten a good number of e-mails that

don't agree with the decision to ban Steve. But those people aren't

going to post for fear of criticism. I guess it's the old squeaky

wheel syndrome at work once again.

By the way, I've also received 2 e-mails from people who are going to

try the cotton ball since reading about it, not because I'm

recommending it, by any means, but because it fits with other things

they've had experience with. One woman said that there's some kind of

therapy where you listen to the recorded voice of your mother, which

has been muffled to simulate the sound in the womb. The theory is

that the sound causes some kind of beneficial physical/immune

response. Another woman thinks it may not be a cure, but that fetal

therapy may provoke a relaxation response, which HAS been proven to

be very beneficial to health. So, I find it unfortunate that we can

decide in a couple of days that something works or doesn't work, that

anything and everything about this person is suspect, and because of

that blanket decision, decide that anything that might be associated

with him or his theory is also nonsense.

Breakthroughs rarely come about as a result of conventional thinking.

Oh well, I give up. If people had just ignored information they

weren't interested in in the first place, this whole thing WOULD have

died down on its own a long time ago. To think that this discussion

is going to set the CFS world on its ear, or turn sympathetic doctors

against us, is some kind of grandiose thinking.

I won't post about it again.

penny

> > Ken, I really wish you'd reconsider the ban on Steve Lord.

> >

> > I can go to a thousand other lists for the politically correct

> > approach to CFIDS, where people guard their diagnosis like it's a

> > membership in a special exclusionary club. I want to learn about

> > anything that might possibly give me a glimmer of understanding

> into

> > this disease. Steve appears to have some interesting conditions,

> his

> > immune response for one thing. And a lot of interesting

> information

> > and experiences. He's certainly willing to try things. He might

> sound

> > crazy or suspect to you, but then I've known truly crazy people

> who

> > sound as normal as you do, and they really do harm people.

> >

> > Please don't turn this into another list where censorship becomes

> the

> > issue. Those lists always self destruct, or if they survive,

> become

> > completely stagnant.

> >

> > thanks for listening to my point of view.

> >

> > penny

> >

[Guest guest]

Hi Penny.

Steve has already told us several times everything we need to know

about the fetal cure to try it. I don't think that anyone has been

denied access to this information.

It is better for the group if we are not bombarded with sales pitches

for miracle cures over and over again.

If Steve's cure is real, we will all hear about it a lot.

Tom