Re: Re: Misguided recovery from CFS

[Guest guest]

The news that Cheney wanted to get some of Shoemaker's equipment was pretty

recent. What direction that effort will take - who knows? I have been frustrated

to read Cheney's more recent presentations. On the one hand, I know he has

dedicated much of his life to discovering how to help us. On the other hand, I'm

frustrated to know that he has been blinded to the neurotoxin problem. Could

this be changing? I know he says he doubts if finding the cause wouild be

helpful to us now. But that is based on the usual assumption that these

conditions have multiple triggers, and that we are suffering from the results of

the triggers more than from the actual triggers themsleves. This even made sense

to me, for a while - until I began to realize that the toxins stay with us, and

why they are not found in ordinary lab tests.

I wonder what might happen if a number of us were to contact Cheney all at once

and ask him to hear us out on this issue? I've only recently come to understand

the toxicity issue myself, after years of suffering from CFS/ME. I delayed

looking at it until forced by circumstance to do so. I hope I don't offend

anyone here, but honestly - to the uninitiated the whole issue comes off as

more than a little bit paranoid and alarmist at first. I have absolutely no

trouble understanding the idea of a " mold hit " , myself. Or even the idea that a

person's sensitivities may be so aroused as to make the most commonly innocuous

substance intolerable (which says " allergy " to them - not " poison " ).

But to someone who HASN'T experienced that personally, a lot of it comes off as

" The sky is falling, the earth is poison, damn all corporate endeavor. They are

evil. Long live Greenpeace and all their tree-loving brethern " . And of course,

if a person has any questions, then there are all those government agencies and

defense attorneys to tell them so as well. We are all just plain crazy. Or, at

the least, they will continue to believe that the chemical sensitivities are

merely a by-product of the whatever-it-is that causes CFIDS/ME/FM/MCS in the

first place - not a direct result intimately involved with the cause.

I want to think that we DO have a voice, even if it might take some

mega-patience and a big fat blue pencil to formulate our experiences into a

format that could be heard by Cheney, et al. approached individually. They

aren't going to give any credence to Madge from Podunk who thinks there " might

be stachibotrys lurking in the basement " . But they MIGHT hear it if it came from

a group of people who could PROVE the exposure and who had a clear post-exposure

diagnosis of one of the illnesses they are interested in. Give them a dozen or

so of these in a clean, clear format, then maybe...I'm thinking of this

approach, because I think now that the government may NEVER listen to us as

patients. But they DO invite people like Cheney to give them their official

opinion.

What do you folks think? Am I just dreaming? Or do I just need a swift kick?

Bring it. I can take it. I'm already humbled beyond my wildest nightmares.

Cheers,

Serena

erik_johnson_96140 <erikj6@...> wrote:

> I think there may be some good news closer at hand than we think.

Cheney has (if I am told correctly) decided to work with some of

Richie Shoemaker's equipment, and is interested in the Ciguatera

research. Perhaps this will give him some new insight. I hope he can

let go of the basic metabolic ideas long enough to realize that he's

probably been looking at the symptoms of neurotoxicity all along. The

fact that he's paying attention to these two lines of research has a

good feel to it. Cheney is extremely influential. If he gets the

right idea, it will be a huge win for all of us!<

I tried to explain the mycotoxin connection to Dr Cheney and Dr

since the first day of the Incline Village epidemic, but

never could get them to listen or investigate the specificity of this

response.

Six years ago I gave Dr Cheney three more chances to listen after I

demonstrated the proof of this response but his office was completely

confused that I was offering to help HIM and that I only waste a

small amount of time on people who have no interest in the mycotoxin

connection.

And I said to them the same thing I say to anybody else who decides

to " blow off " this information; " Tough luck for you " .

Dr Hyde tells me that he heard that Dr Cheney's health has forced him

to withdraw from practice again so I'm uncertain how much of a part,

if any, that Dr Cheney will be able to take in this.

-

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---------------------------------

[Guest guest]

The joint pain can keep me in bed for days,

Janet

[Guest guest]

,

Different people will be touched by different stories and situations

at different times. That's why a variety are needed at different

times. The recent post by Carol Lloyd at

http://www.sfgate.com/columnists/lloyd/ was very powerful to me but

not to a friend of mine.

What particularly struck me about the story was the sentence,

" Whether it's a tepee or a skyscraper, a cottage or a courthouse,

buildings have always stood as our species' most dependable barrier

between danger and safety, between wilderness and civilization. "

No wonder the deep psychological issues are triggered! The abuse

occurs when others, whether family or health care and other

authorities, don't recognize the difference between the physicality

and the normal issues it triggers. That becomes blaming the victim,

which intensifies our harm and their defenses.

Carl

-----

> People don't care about " numbers " .

> No additional numbers of horror stories are going to make any

> difference over and above the thousands that have already been told.

> Nobody is going to be doubtful about mold reactivity, read a thousand

> stories and suddenly have a " Road to Damascus " enlightenment on the

> thousand and first story.

>

> People connect with stories from celebrities.

> People care if they think it can happen to them.

>

> For maximum impact, this is where emphasis must be placed.

> -