Re: Why I'm Not A CFS Activist

[Guest guest]

I dont know read the former posts but it is funny how we end up attacking our

own. I read in a book on someones struggle with Parkinson's disease how a judge

had to separate two advocacy organizations that were at each others throats!

What a cauldron. Its so short-sighted from the outside but I guess it happens

in many types of disease. Its probably magnified in CFS from all disappointments

and frustrations.

Congratulations on the CBT. I have long thought its probably helpful for

anyone with a chronic disease - its track record indicates that - its

unfortunate its become such a hot button subject but thats probably inevitable

given that theres little moderation on 'other side' - the promoters of CBT. The

best thing I ever did for CFS was transformational workshop called EST - it

didnt get me well but I felt much better and it helped tremendously.

I'd love to have your story on the CFS Phoenix website.

http://phoenix-cfs.org/The%20SITE/StoriesCFS.htm

Cort

Mercuria <mercuria@...> wrote:

My recent exchange with Kat raises a larger point.

When I started getting better a couple years back, I thought

seriously about becoming an activist for CFS/ME. It would have been a

natural fit. I'm a journalist, have done PR, was raised in a

political family, know my way around the policy process, am a first-

rate public speaker, and know how to do some fundraising besides.

So I started to put myself in the online places where the activists

gathered, researched the history and issues, and tried to figure out

where I could contribute.

What I found was beyond depressing. I've been involved in progressive

politics long enough to know a circular firing squad when I see one

-- but I have to say that, in all my life, I have never seen one as

tight, twitchy, and deadly effective as the one formed by the people

who advocate for our disease. After several months, I realized there

WAS no place for me -- not if I valued my health or sanity. And I

also realized that the extreme emotionalism and anger was probably

long-term insurance that nothing politically productive will EVER be

done for our disease, except occasionally by accident.

A lot of these " activists " seem to spend much of their time mired in

rage over insults received and opportunities missed 20 years ago.

They get so stuck there that they seem to find it very hard to deal

with the present situation. Those of us who say, " Well, OK, that's

over and done. Here's what it is NOW -- let's deal with that " usually

get long lectures about how we don't appreciate how awful it all was

Back Then. I'm not dealing with Back Then. There's more than enough

trouble Right Now without borrowing it from the past; and I can do a

hell of a lot more about today's trouble than I can about last year's.

These people definitely deserve apologies. They have been cut to the

bone by some truly horrific history. But they are not going to get

apologies, probably ever. It's a waste of time to wait for them, or

demand them -- but demand them they do, from just about anybody who

walks onto the scene.

The best they can do is get closure for themselves, and move on. I

know all about this: I've lost half my life to this disease, too. I'm

also enraged about what it's cost me. I had a dazzling future -- one

in a thousand in many respects -- and it coming to terms with the

grief is one of the hardest things I've ever done.

But (here's where I'm really gonna get it -- and why this post is

germane to this list) that's where CBT actually did help. It allowed

me to accept my reality, put the grief in perspective, and get on

with making the most with my life as it is. I can spend my days

nursing the festering pustule of decades-old anger, and let it

consume what's left of my spirit. Or I can use what time and energy I

have to love my husband, mother my kids, write when I can, look for

more ways to get better, go to school, and make the contribution I

can make. Same life, same energy, same limitations -- very different

choices.

My life is too short to waste on rage at a past that's over, or a

disease I can't cure. It's also too short to spend throwing myself

against the machine on behalf of people who don't know how to be

politically effective themselves, but are great at taking out anyone

who might actually know how to change the status quo.

Sara

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

[Guest guest]

I think what you describe about people being at one another's throats is not

just in the ill community. I hate to call it *genetic* for our species to be so

aggressive about opinions, but hey, look how many wars are going on around the

world. Not to mention neighbors, counties, states, pubs, apartment buildings.

We want to hang with others, birds of a feather, but argue about just about

anything. Including the most precious of things......health or the lack of it.

We're all our own, even " others " .

cort johnson <cortttt@...> wrote: I dont know read the former

posts but it is funny how we end up attacking our own. I read in a book on

someones struggle with Parkinson's disease how a judge had to separate two

advocacy organizations that were at each others throats! What a cauldron. Its so

short-sighted from the outside but I guess it happens in many types of disease.

Its probably magnified in CFS from all disappointments and frustrations.

Congratulations on the CBT. I have long thought its probably helpful for anyone

with a chronic disease - its track record indicates that - its unfortunate its

become such a hot button subject but thats probably inevitable given that theres

little moderation on 'other side' - the promoters of CBT. The best thing I ever

did for CFS was transformational workshop called EST - it didnt get me well but

I felt much better and it helped tremendously.

I'd love to have your story on the CFS Phoenix website.

http://phoenix-cfs.org/The%20SITE/StoriesCFS.htm

Cort

Mercuria <mercuria@...> wrote:

My recent exchange with Kat raises a larger point.

When I started getting better a couple years back, I thought

seriously about becoming an activist for CFS/ME. It would have been a

natural fit. I'm a journalist, have done PR, was raised in a

political family, know my way around the policy process, am a first-

rate public speaker, and know how to do some fundraising besides.

So I started to put myself in the online places where the activists

gathered, researched the history and issues, and tried to figure out

where I could contribute.

What I found was beyond depressing. I've been involved in progressive

politics long enough to know a circular firing squad when I see one

-- but I have to say that, in all my life, I have never seen one as

tight, twitchy, and deadly effective as the one formed by the people

who advocate for our disease. After several months, I realized there

WAS no place for me -- not if I valued my health or sanity. And I

also realized that the extreme emotionalism and anger was probably

long-term insurance that nothing politically productive will EVER be

done for our disease, except occasionally by accident.

A lot of these " activists " seem to spend much of their time mired in

rage over insults received and opportunities missed 20 years ago.

They get so stuck there that they seem to find it very hard to deal

with the present situation. Those of us who say, " Well, OK, that's

over and done. Here's what it is NOW -- let's deal with that " usually

get long lectures about how we don't appreciate how awful it all was

Back Then. I'm not dealing with Back Then. There's more than enough

trouble Right Now without borrowing it from the past; and I can do a

hell of a lot more about today's trouble than I can about last year's.

These people definitely deserve apologies. They have been cut to the

bone by some truly horrific history. But they are not going to get

apologies, probably ever. It's a waste of time to wait for them, or

demand them -- but demand them they do, from just about anybody who

walks onto the scene.

The best they can do is get closure for themselves, and move on. I

know all about this: I've lost half my life to this disease, too. I'm

also enraged about what it's cost me. I had a dazzling future -- one

in a thousand in many respects -- and it coming to terms with the

grief is one of the hardest things I've ever done.

But (here's where I'm really gonna get it -- and why this post is

germane to this list) that's where CBT actually did help. It allowed

me to accept my reality, put the grief in perspective, and get on

with making the most with my life as it is. I can spend my days

nursing the festering pustule of decades-old anger, and let it

consume what's left of my spirit. Or I can use what time and energy I

have to love my husband, mother my kids, write when I can, look for

more ways to get better, go to school, and make the contribution I

can make. Same life, same energy, same limitations -- very different

choices.

My life is too short to waste on rage at a past that's over, or a

disease I can't cure. It's also too short to spend throwing myself

against the machine on behalf of people who don't know how to be

politically effective themselves, but are great at taking out anyone

who might actually know how to change the status quo.

Sara

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

[Guest guest]

On Aug 30, 2006, at 2:04 PM, Edy Rayfield wrote:

> I think what you describe about people being at one another's

> throats is not just in the ill community. I hate to call it

> *genetic* for our species to be so aggressive about opinions, but

> hey, look how many wars are going on around the world. Not to

> mention neighbors, counties, states, pubs, apartment buildings. We

> want to hang with others, birds of a feather, but argue about just

> about anything. Including the most precious of things......health

> or the lack of it. We're all our own, even " others " .

Some groups are more aggressive than others, for a wide variety of

reasons that I'm actually gearing up to write a master's thesis on.

(I've spent most of the past three weeks blogging about it at

<www.dneiwert.blogspot.com> -- in a series that made it to the front

page of Daily Kos, among a hundred other places.) And part of being

in politics is learning how to deal with people who don't agree, and

all the various ways they deal with that disagreement -- some

constructive, some decidedly not so much. I'm really used to all

that. In fact, I'm suspicious if I don't feel that resistance to a

new suggestion or idea. It's a natural and usually healthy part of

any group process.

What surprised me here, thought, was the general level of crankiness

and hostility among politically active PWCs. It's just outside my

experience. " I've been damaged, and you can't make it better, so f***

you. " Well, no, I can't make it better. I can't give you back the

lost years, or get you out of bed. I didn't do this to you. I'm not

making light of what you've been through. In fact, I take it so

seriously I want to make sure it doesn't happen to other people in

the future -- and that's why I'm here. But if you'd rather use me as

your punching bag than work with me to do that, I'll go elsewhere.

What's amazing is how many of these fights come down to semantics.

The genes versus bugs fight is mild, actually. The really tough one

is when you try to talk about ME/CFS definitions -- which WERE

SPECIFICALLY DESIGNED BY OUR ENEMIES TO CONFUSE US . It's a strategy

that's clearly working brilliantly, too, given how much time and

energy is devoted to fighting over it whenever PWCs get together.

You'd think after 20 years, somebody would have realized that even

stooping to fight about it is, by definition, Letting Strauss Win --

and would thus will themselves to cut it out rather than ever allow

such arguments to happen. But no. Every shred of energy we don't have

to spare is squandered on heated fights about Fukuda versus Holmes

versus the CCD and what *really* happened in Incline. And then people

wonder why nothing ever happens. Duh.

And you saw what happened when I invoked the CDC. Once in a while,

over the course of 30 years, even a big lumbering stupid beast like

the CDC is going to get something more or less right -- and they do

seem to be on a reasonable track with this gene thing. Raging at

them about stuff they got wrong 20 years ago is not the most

constructive way to encourage them to stay a good course. As it is,

there's no way the PWC community could ever confront the CDC head-on

over *anything* anyway -- they're too busy hollering about past abuse

to present the strong, calm, consistent messages that gets such

beasts to move. The AIDS activists did not make that mistake. That's

why they're rolling in the bux, and we've got bupkis.

I know this is now way off-topic for this list, and I'm ready to stop

talking about it. But I just had to point out that, when it comes to

Why We Don't Get No Respect, there's no question in my mind that, to

an extraordinary degree not seen in other health activist groups, it

starts in the truly abysmal ways we disrespect each other, the

refusal to let go of past abuses and focus on the present situation,

and the colossal amounts of energy sucked up by endless and

unwinnable fights.

Sara

[Guest guest]

Extremely intense polarization, vehement disagreements on activism, cause,

treatment, etc. most decidedly did occur in the AIDS movement. Some played out

very publicly, some not. Books by long term participants are written about it.

Sometimes things are in the eye of the beholder. You were also told many many

things that have worked in CFS world, and many things that did not. BY others

who, like you have history of progressive work, and successful changing of the

status quo, and wanting to share that...

Defining/specifying the disease for which treatment is being recommended is not

irrelevant to treatment. It is difficult to clarify the confusion of the

changing CDC definition being used without mentioning the CDC.

Katrina

>

> > I think what you describe about people being at one another's

> > throats is not just in the ill community. I hate to call it

> > *genetic* for our species to be so aggressive about opinions, but

> > hey, look how many wars are going on around the world. Not to

> > mention neighbors, counties, states, pubs, apartment buildings. We

> > want to hang with others, birds of a feather, but argue about just

> > about anything. Including the most precious of things......health

> > or the lack of it. We're all our own, even " others " .

>

> Some groups are more aggressive than others, for a wide variety of

> reasons that I'm actually gearing up to write a master's thesis on.

> (I've spent most of the past three weeks blogging about it at

> <www.dneiwert.blogspot.com> -- in a series that made it to the front

> page of Daily Kos, among a hundred other places.) And part of being

> in politics is learning how to deal with people who don't agree, and

> all the various ways they deal with that disagreement -- some

> constructive, some decidedly not so much. I'm really used to all

> that. In fact, I'm suspicious if I don't feel that resistance to a

> new suggestion or idea. It's a natural and usually healthy part of

> any group process.

>

> What surprised me here, thought, was the general level of crankiness

> and hostility among politically active PWCs. It's just outside my

> experience. " I've been damaged, and you can't make it better, so f***

> you. " Well, no, I can't make it better. I can't give you back the

> lost years, or get you out of bed. I didn't do this to you. I'm not

> making light of what you've been through. In fact, I take it so

> seriously I want to make sure it doesn't happen to other people in

> the future -- and that's why I'm here. But if you'd rather use me as

> your punching bag than work with me to do that, I'll go elsewhere.

>

> What's amazing is how many of these fights come down to semantics.

> The genes versus bugs fight is mild, actually. The really tough one

> is when you try to talk about ME/CFS definitions -- which WERE

> SPECIFICALLY DESIGNED BY OUR ENEMIES TO CONFUSE US . It's a strategy

> that's clearly working brilliantly, too, given how much time and

> energy is devoted to fighting over it whenever PWCs get together.

> You'd think after 20 years, somebody would have realized that even

> stooping to fight about it is, by definition, Letting Strauss Win --

> and would thus will themselves to cut it out rather than ever allow

> such arguments to happen. But no. Every shred of energy we don't have

> to spare is squandered on heated fights about Fukuda versus Holmes

> versus the CCD and what *really* happened in Incline. And then people

> wonder why nothing ever happens. Duh.

>

> And you saw what happened when I invoked the CDC. Once in a while,

> over the course of 30 years, even a big lumbering stupid beast like

> the CDC is going to get something more or less right -- and they do

> seem to be on a reasonable track with this gene thing. Raging at

> them about stuff they got wrong 20 years ago is not the most

> constructive way to encourage them to stay a good course. As it is,

> there's no way the PWC community could ever confront the CDC head-on

> over *anything* anyway -- they're too busy hollering about past abuse

> to present the strong, calm, consistent messages that gets such

> beasts to move. The AIDS activists did not make that mistake. That's

> why they're rolling in the bux, and we've got bupkis.

>

> I know this is now way off-topic for this list, and I'm ready to stop

> talking about it. But I just had to point out that, when it comes to

> Why We Don't Get No Respect, there's no question in my mind that, to

> an extraordinary degree not seen in other health activist groups, it

> starts in the truly abysmal ways we disrespect each other, the

> refusal to let go of past abuses and focus on the present situation,

> and the colossal amounts of energy sucked up by endless and

> unwinnable fights.

>

> Sara

>

[Guest guest]

Re: Why I'm Not A CFS Activist

" ... it

starts in the truly abysmal ways we disrespect each other, the

refusal to let go of past abuses and focus on the present situation,

and the colossal amounts of energy sucked up by endless and

unwinnable fights, " said Sara.

Sara,

I just chalk all that up to one more obnoxious symptom. I didn't know we were

worse at it. Just part of how people are, basically. (There are probably genes

that code for it, for God's sake!)

I don't spend much energy caring about any of the politics of it, including

that aspect.

I hate my situation- but it is what it is, and all I can do is the best I can

do,on whatever level. Where other people's behaviors are involved, no use to me

that I can see to wishing, hoping, expecting, bemoaning, sorrowing, raging,

excoriating, despairing, convincing, etc.

Does not further my well-being one bit. Not any of that.

Adrienne

[Guest guest]

I'm definetly going to read your blogs as this has been a confusing issue for me

as well. I want to chalk it up to a lot of us being cranky as a result of

feeling so awful most of the time, but the truth is you catch more bees with

honey and I've found that if I don't participate in confrontation the situation

can be defused and we can hear one another. I've also found that more

information and the help I need comes when I'm polite about it even if I am

angry. I've actually written letters to doctors I felt condescended to me and

nicely told them I wouldn't be paying the bill for shoddy care. Not one

responded.

Do you really think it's that off topic? I remember reading a long time ago

that in CFS anger is danger.....a trigger possibly? I think getting educated in

constructive communication is very germane to finding the missing peices of this

puzzle we call CFS.

Mercuria <mercuria@...> wrote:

On Aug 30, 2006, at 2:04 PM, Edy Rayfield wrote:

> I think what you describe about people being at one another's

> throats is not just in the ill community. I hate to call it

> *genetic* for our species to be so aggressive about opinions, but

> hey, look how many wars are going on around the world. Not to

> mention neighbors, counties, states, pubs, apartment buildings. We

> want to hang with others, birds of a feather, but argue about just

> about anything. Including the most precious of things......health

> or the lack of it. We're all our own, even " others " .

Some groups are more aggressive than others, for a wide variety of

reasons that I'm actually gearing up to write a master's thesis on.

(I've spent most of the past three weeks blogging about it at

<www.dneiwert.blogspot.com> -- in a series that made it to the front

page of Daily Kos, among a hundred other places.) And part of being

in politics is learning how to deal with people who don't agree, and

all the various ways they deal with that disagreement -- some

constructive, some decidedly not so much. I'm really used to all

that. In fact, I'm suspicious if I don't feel that resistance to a

new suggestion or idea. It's a natural and usually healthy part of

any group process.

What surprised me here, thought, was the general level of crankiness

and hostility among politically active PWCs. It's just outside my

experience. " I've been damaged, and you can't make it better, so f***

you. " Well, no, I can't make it better. I can't give you back the

lost years, or get you out of bed. I didn't do this to you. I'm not

making light of what you've been through. In fact, I take it so

seriously I want to make sure it doesn't happen to other people in

the future -- and that's why I'm here. But if you'd rather use me as

your punching bag than work with me to do that, I'll go elsewhere.

What's amazing is how many of these fights come down to semantics.

The genes versus bugs fight is mild, actually. The really tough one

is when you try to talk about ME/CFS definitions -- which WERE

SPECIFICALLY DESIGNED BY OUR ENEMIES TO CONFUSE US . It's a strategy

that's clearly working brilliantly, too, given how much time and

energy is devoted to fighting over it whenever PWCs get together.

You'd think after 20 years, somebody would have realized that even

stooping to fight about it is, by definition, Letting Strauss Win --

and would thus will themselves to cut it out rather than ever allow

such arguments to happen. But no. Every shred of energy we don't have

to spare is squandered on heated fights about Fukuda versus Holmes

versus the CCD and what *really* happened in Incline. And then people

wonder why nothing ever happens. Duh.

And you saw what happened when I invoked the CDC. Once in a while,

over the course of 30 years, even a big lumbering stupid beast like

the CDC is going to get something more or less right -- and they do

seem to be on a reasonable track with this gene thing. Raging at

them about stuff they got wrong 20 years ago is not the most

constructive way to encourage them to stay a good course. As it is,

there's no way the PWC community could ever confront the CDC head-on

over *anything* anyway -- they're too busy hollering about past abuse

to present the strong, calm, consistent messages that gets such

beasts to move. The AIDS activists did not make that mistake. That's

why they're rolling in the bux, and we've got bupkis.

I know this is now way off-topic for this list, and I'm ready to stop

talking about it. But I just had to point out that, when it comes to

Why We Don't Get No Respect, there's no question in my mind that, to

an extraordinary degree not seen in other health activist groups, it

starts in the truly abysmal ways we disrespect each other, the

refusal to let go of past abuses and focus on the present situation,

and the colossal amounts of energy sucked up by endless and

unwinnable fights.

Sara

[Guest guest]

> > > I think what you describe about people being at one another's

> > > throats is not just in the ill community.

No, but I have found the level of it, and of the intellectual dishonesty,

general disrespect

for people and lack of integrity, and many other negatives to correlate

surprisingly

strongly with the condition in question.

I was pretty unpleasantly surprised by this.

CFS is I think a little bit below the middle of the pack in this area. MCS and

fibromyalgia

are pretty bad, as are some psychiatric areas.

In some ways I think this is part of internet culture, in others part of the

disease process,

and maybe in others simply part of how the MD world has chosen to parse up the

people

who are mostly poisoned by paying attention to symptoms that correlate with

these

behavior pattterns.

However it makes it VERY difficult for the people with conditions where the

milieu is

" negative " to get the information and help they need to get better. Everyone

would be very

well served to learn to recognize and not tolerate flaming and trolling and

moderator

abuse of power (to sanitize what is posted on supposedly unbiased listservers)

and instead

listen politely to varying opinions, tolerate some emotional heat but respond by

damping

it down and hope that everyone can find a tidbit of information that helps them

get better

rather than being trapped in a groupthink that enforces permanent misery on all.

Andy

[Guest guest]

On Aug 30, 2006, at 3:17 PM, kattemayo wrote:

> Defining/specifying the disease for which treatment is being

> recommended is not irrelevant to treatment. It is difficult to

> clarify the confusion of the changing CDC definition being used

> without mentioning the CDC.

I disagree. The definitions were written specifically to be useless

for any real diagnostic or research purpose. They are irrelevant. And

arguments about them are inherently unwinnable as a result.

The CDC's various definitions were designed as traps to collect and

siphon off energy. They have done this perfectly for over two decades

now. They are a waste of our time, and unworthy of argument.

As a community, we need to respond collectively that we do not

consider them accurate or operative, rather than debate them on their

merits (of which there are none).

Among ourselves, we should agree that they are an externally-imposed

abomination, that any disputes regarding them are deliberately and

inherently unwinnable, and that they are unworthy of our time and

energy.

It sounds like many of us have quietly come to this conclusion on our

own.

Sara

[Guest guest]

Did I hear that the CDC was being investigated by congress for misapropriation

of funds for CFS research and syphoning it off to other disease's research? If

so, that's enough to get one's dander up. Not mention their criteria for

diagnosing lyme.

Mercuria <mercuria@...> wrote:

On Aug 30, 2006, at 3:17 PM, kattemayo wrote:

> Defining/specifying the disease for which treatment is being

> recommended is not irrelevant to treatment. It is difficult to

> clarify the confusion of the changing CDC definition being used

> without mentioning the CDC.

I disagree. The definitions were written specifically to be useless

for any real diagnostic or research purpose. They are irrelevant. And

arguments about them are inherently unwinnable as a result.

The CDC's various definitions were designed as traps to collect and

siphon off energy. They have done this perfectly for over two decades

now. They are a waste of our time, and unworthy of argument.

As a community, we need to respond collectively that we do not

consider them accurate or operative, rather than debate them on their

merits (of which there are none).

Among ourselves, we should agree that they are an externally-imposed

abomination, that any disputes regarding them are deliberately and

inherently unwinnable, and that they are unworthy of our time and

energy.

It sounds like many of us have quietly come to this conclusion on our

own.

Sara

[Guest guest]

Hello,

Sara is correct that loving family & doing the things to treat the disease

should take priority over everything else. And I think she is also correct in

assessing some of the activist problems, although I think a lot of that is

germane

to the situation because of the CDC's active cover-up & misinformation which

causes

a lot of negative response and difficulty in unraveling the truth.

However, I think it's a mistake to paint advocacy with such a broad

brushstroke

of negativity. This attitude I think could not be supported if we look

at the situation with MS. If they had had this negative attitude about

advocacy, they

would still be dealing with the name, " Hysterics paralysis " or " Fakers disease "

and they would not have pushed Congress in 1950 to have MS placed in the

category of Neurological Disorders in the NIH. They also would have totally

neglected the fact that the name MS had been suggested as the name for that

disease

in the late 1900s and they needed to go back to that name. In regard to M.E.,

the recent very excellent M.E. London Conference (available on DVD) would not

have taken place--activist mothers of children with M.E. organized that

conference.

Also, you're missing the point about CBT. Everyone would agree that CBT is

useful

in dealing with serious diseases. It's a whole different ballgame when as UK &

US

psychiatrists band together to assert that the combination of CBT, GET, and

antidepressant drugs are CURATIVE and the only APPROPRIATE treatments

for the disease, M.E., which is the premisethey're trying to sell to other

physicians,

that needs to be countered by concerted advocacy. I think this is worthy of

the attention of the M.E. community. It's unfortunate that being saddled with

the

name CFS immediately tends to cause healthy supporters not to want to be

involved

because they are experiencing " fatigue " also, so why help the malingerers?

The historical context of Myalgic Encephalomyelitis/CFS is extremely

important

in reclaiming the Neurological classification as well as a solid definition &

criteria

which as you say is available in the 2003 Consensus Criteria. It's also

important

in looking for the best treatments and the best diagnostic testing. CFS is

being

relegated into the classifications of Lethargy or a mental classification under

the

" leadership " of the CDC.

I had my doctor change my diagnosis to Myalgic Encephalomyelitis in the year

2000

and had a brain neuro SPECT scan which was very abnormal. I then applied for

disability

and received it with no problems two months later on the basis of the diagnostic

SPECT

scan as well as some diagnostic neurocognitive testing that was required by the

disability worker at Social Security.

The new web site (National Alliance for Myalgic Encephalomyelitis)

that we have recently started is to help educate patients

and doctors in biomedical research for this disease as well as

understanding the wider historical context of the epidemic outbreaks of Myalgic

Encephalomyelitis and also to understand that there are nonroutine tests that

are very

clearly abnormal and diagnostic for Myalgic encephalomyelitis, all of which

which the CDC seemingly denies.

The Congressional Action is part of the help process in trying to turn things

around

and educate the public and patients about the disease.

This doesn't mean that the priorities that you mention are ignored, but rather

to at

least fight injustice & misinformation about M.E. in some small way as we are

able.

Du Pre

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

[Guest guest]

Mercuria <mercuria@...> wrote:

> The CDC's various definitions were designed as traps to collect

and siphon off energy. They have done this perfectly for over two

decades now. They are a waste of our time, and unworthy of argument.

>

> As a community, we need to respond collectively that we do not

> consider them accurate or operative, rather than debate them on

their merits (of which there are none).

>

> Among ourselves, we should agree that they are an externally-

imposed abomination, that any disputes regarding them are

deliberately and inherently unwinnable, and that they are unworthy

of our time and energy.

> Sara

>

Yes.

I don't think of myself as a CFS activist, just someone who bears

witness to what happened.

But it was amazing to be attacked in a CFS group for saying that

CFS is the name given to the illness that we had in Incline, and

that no matter what distortions have occurred, if someone is

thinking about the " Yuppie Flu/Incline incident " when they say CFS,

then I have the right to tell them about what really happened rather

than what they think happened - and what that illness is really

like: Such as not being fatigue, stress and stressors, burnout or

bad diet. And despite the " genetic " craze, CFS is something that

swept through our community in a way that genetic illnesses are

never known to do, hitting young and old. That would be like

Mendel's peas acquiring mutations in the parent peas.

Those of us who have decided not to accept any more abuse are

probably never going to get an apology, but we do not intend to see

that those who abused us are validated by a blanket concession

that " CFS is fatigue " and " CFS is not ME " that some name blamers

want to make in order to to escape the dreaded " f " word.

Eventually there will come a point in which denialists will be

afraid to say that CFS is just fatigue, because everyone around them

will whip out research articles that show what a stupid thing to say

that is.

-

[Guest guest]

On Aug 30, 2006, at 4:23 PM, Du Pre wrote:

> However, I think it's a mistake to paint advocacy with such a

> broad brushstroke

> of negativity. This attitude I think could not be supported if we

> look

> at the situation with MS. If they had had this negative attitude

> about advocacy, they

> would still be dealing with the name, " Hysterics paralysis " or

> " Fakers disease "

> and they would not have pushed Congress in 1950 to have MS placed

> in the

> category of Neurological Disorders in the NIH. They also would

> have totally

> neglected the fact that the name MS had been suggested as the name

> for that disease

> in the late 1900s and they needed to go back to that name. In

> regard to M.E.,

> the recent very excellent M.E. London Conference (available on DVD)

> would not

> have taken place--activist mothers of children with M.E. organized

> that conference.

I'm not saying that good activism isn't useful. As I said: I've grown

up in politics. I know that many wonderful things are possible with

good coordinated action.

I also know that the MS people, and the AIDS people, and the autism

people, would never have scored the successes they've achieved if

they'd wasted 60% of their time and energy (and that's a conservative

estimate) fighting among themselves about basic terms, with no

agreement possible and no resolution in sight. Most groups who were

serious about making progress would have long ago said: This is a

massive waste of our time. If we can't agree, let's at least agree

that fighting is pointless -- and stop doing it.

I have never in my life seen a group of people so intent on focusing

on trivialities at the expense of their larger goals. Ever.

Especially when every one of them knows that they're fighting a fight

that their own worst enemies set them up to have. That's like letting

the terrorists win.

> Also, you're missing the point about CBT. Everyone would agree

> that CBT is useful

> in dealing with serious diseases.

That's not been my experience. I've got the scars, thanks, for daring

to suggest that I actually got some benefit out of it. It's another

one of those hot buttons: you even mention the acronym, and people's

knees just start jerking. Their minds shut down, and the squabbling

begins. I've been called a traitor and other horrible names for even

admitting I'd done this.

> It's a whole different ballgame when as UK & US

> psychiatrists band together to assert that the combination of CBT,

> GET, and

> antidepressant drugs are CURATIVE and the only APPROPRIATE treatments

> for the disease, M.E., which is the premisethey're trying to sell

> to other

> physicians, that needs to be countered by concerted advocacy. I

> think this is worthy of

> the attention of the M.E. community.

You're not telling me anything here I don't know. And I agree it's

worthy of attention -- but just automatically assuming that, because

some stupid people think CBT is a full-on cure, the rest of us should

entirely reject the therapy as having no benefit at all, is just

nonsense. For a lot of us, though, there seems to be no middle ground.

That's black-and-white thinking -- the kind that only happens when

people suspend their rational faculties and start operating out of

fear. (And, yes, the physiology of this process is well understood.

It wouldn't surprise me at all to find that there was damage to the

amygdala that does reduce our ability to make fine distinctions and

see the gray shades). And it makes us impossible for other groups to

deal with. It's a huge reason there's so little real dialogue between

us and the various medical communities that decide our fates. They

say " CBT " , and we don't even wait to hear the rest of the speaker's

sentence. We just decide s/he's the Enemy, and shut 'em down. And, in

return, they decide we're too hysterical to deal with -- which only

confirms their opinion of us as crazy.

> It's unfortunate that being saddled with the

> name CFS immediately tends to cause healthy supporters not to want

> to be involved

> because they are experiencing " fatigue " also, so why help the

> malingerers?

That's why I think we should blow off " CFS " entirely. It's an entirey

made-up disease, constructed for political purposes that are contrary

to our interests. We should have never accepted it -- and we can

still walk away from it.

I've argued this before. I don't have CFS: I have ME, which is a

disease with a 70-year history covering scores of outbreaks on every

continent (and which also describes my specific symptoms far more

accurately than that stupid " CFS " confection concocted by the CDC).

Others here may decide they have biotoxin illness, or glutathione

insufficiency syndrome, or heavy metals poisoning. Whatever -- the

CFS ship was custom-built to drown us, and we need to get off it.

> The historical context of Myalgic Encephalomyelitis/CFS is

> extremely important

> in reclaiming the Neurological classification as well as a solid

> definition & criteria

> which as you say is available in the 2003 Consensus Criteria. It's

> also important

> in looking for the best treatments and the best diagnostic

> testing. CFS is being

> relegated into the classifications of Lethargy or a mental

> classification under the

> " leadership " of the CDC.

Why is why we jettison the whole damn thing. They can have their made-

up little disease; but we don't have to agree to it. We're free to

walk away from that definition, and put ourselves under the much more

sturdy umbrella of ME. If we did this en masse, this charade would

end. And so would the arguments.

> I had my doctor change my diagnosis to Myalgic

> Encephalomyelitis in the year 2000

> and had a brain neuro SPECT scan which was very abnormal. I then

> applied for

> disability and received it with no problems two months later on the

> basis of the diagnostic SPECT

> scan as well as some diagnostic neurocognitive testing that was

> required by the

> disability worker at Social Security.

I remember this story, and have been much inspired by it. It's a

terrific argument for why none of us should have any truck with the

CDC's silly definitions. It's all about who has the power to define

reality here: them, or us?

It's OUR reality that's being defined here, and we have a lot more

power to shape it than we think we do. They can build their leaky

definition; but there's no requirement that we climb on board,

especially not when there are other sturdy options.

> The new web site (National Alliance for Myalgic Encephalomyelitis)

> that we have recently started is to help educate patients

> and doctors in biomedical research for this disease as well as

> understanding the wider historical context of the epidemic

> outbreaks of Myalgic

> Encephalomyelitis and also to understand that there are nonroutine

> tests that are very

> clearly abnormal and diagnostic for Myalgic encephalomyelitis, all

> of which

> which the CDC seemingly denies.

> The Congressional Action is part of the help process in trying to

> turn things around

> and educate the public and patients about the disease.

> This doesn't mean that the priorities that you mention are ignored,

> but rather to at

> least fight injustice & misinformation about M.E. in some small way

> as we are able.

This is exactly the kind of thing I think we need to be doing.

Thanks for weighing in.

Sara

[Guest guest]

Mercuria <mercuria@...> wrote:

> Especially when every one of them knows that they're fighting a

fight that their own worst enemies set them up to have. That's like

letting the terrorists win.

> I've argued this before. I don't have CFS: I have ME, which is a

> disease with a 70-year history covering scores of outbreaks on every

continent (and which also describes my specific symptoms far more

accurately than that stupid " CFS " confection concocted by the CDC).

>

Wow. Doing exactly what the CDC set up when they named it CFS.

Being in a CFS group and identifying with people in a CFS group yet

attacking CFS anyway.

That's like letting the terrorists win, isn't it?

-

[Guest guest]

On Aug 30, 2006, at 5:48 PM, erikmoldwarrior wrote:

> Wow. Doing exactly what the CDC set up when they named it CFS.

> Being in a CFS group and identifying with people in a CFS group yet

> attacking CFS anyway.

>

> That's like letting the terrorists win, isn't it?

: Thanks so much for this ready and illustrative demonstration of

my exact point.

This is a fight we should be SO over by now.

Sara

[Guest guest]

I think by trying to get our political voices in tune on this as we struggle

with our fate hopefully people are talking to as many as we can that the

canaries are fainting in the mines. I think maybe that's us. It just shouldn't

be so tough. By being vocal we're saying.....notice. Something unpleasant is

going on here. Why? Hence, Experimental.

Mercuria <mercuria@...> wrote:

On Aug 30, 2006, at 4:23 PM, Du Pre wrote:

> However, I think it's a mistake to paint advocacy with such a

> broad brushstroke

> of negativity. This attitude I think could not be supported if we

> look

> at the situation with MS. If they had had this negative attitude

> about advocacy, they

> would still be dealing with the name, " Hysterics paralysis " or

> " Fakers disease "

> and they would not have pushed Congress in 1950 to have MS placed

> in the

> category of Neurological Disorders in the NIH. They also would

> have totally

> neglected the fact that the name MS had been suggested as the name

> for that disease

> in the late 1900s and they needed to go back to that name. In

> regard to M.E.,

> the recent very excellent M.E. London Conference (available on DVD)

> would not

> have taken place--activist mothers of children with M.E. organized

> that conference.

I'm not saying that good activism isn't useful. As I said: I've grown

up in politics. I know that many wonderful things are possible with

good coordinated action.

I also know that the MS people, and the AIDS people, and the autism

people, would never have scored the successes they've achieved if

they'd wasted 60% of their time and energy (and that's a conservative

estimate) fighting among themselves about basic terms, with no

agreement possible and no resolution in sight. Most groups who were

serious about making progress would have long ago said: This is a

massive waste of our time. If we can't agree, let's at least agree

that fighting is pointless -- and stop doing it.

I have never in my life seen a group of people so intent on focusing

on trivialities at the expense of their larger goals. Ever.

Especially when every one of them knows that they're fighting a fight

that their own worst enemies set them up to have. That's like letting

the terrorists win.

> Also, you're missing the point about CBT. Everyone would agree

> that CBT is useful

> in dealing with serious diseases.

That's not been my experience. I've got the scars, thanks, for daring

to suggest that I actually got some benefit out of it. It's another

one of those hot buttons: you even mention the acronym, and people's

knees just start jerking. Their minds shut down, and the squabbling

begins. I've been called a traitor and other horrible names for even

admitting I'd done this.

> It's a whole different ballgame when as UK & US

> psychiatrists band together to assert that the combination of CBT,

> GET, and

> antidepressant drugs are CURATIVE and the only APPROPRIATE treatments

> for the disease, M.E., which is the premisethey're trying to sell

> to other

> physicians, that needs to be countered by concerted advocacy. I

> think this is worthy of

> the attention of the M.E. community.

You're not telling me anything here I don't know. And I agree it's

worthy of attention -- but just automatically assuming that, because

some stupid people think CBT is a full-on cure, the rest of us should

entirely reject the therapy as having no benefit at all, is just

nonsense. For a lot of us, though, there seems to be no middle ground.

That's black-and-white thinking -- the kind that only happens when

people suspend their rational faculties and start operating out of

fear. (And, yes, the physiology of this process is well understood.

It wouldn't surprise me at all to find that there was damage to the

amygdala that does reduce our ability to make fine distinctions and

see the gray shades). And it makes us impossible for other groups to

deal with. It's a huge reason there's so little real dialogue between

us and the various medical communities that decide our fates. They

say " CBT " , and we don't even wait to hear the rest of the speaker's

sentence. We just decide s/he's the Enemy, and shut 'em down. And, in

return, they decide we're too hysterical to deal with -- which only

confirms their opinion of us as crazy.

> It's unfortunate that being saddled with the

> name CFS immediately tends to cause healthy supporters not to want

> to be involved

> because they are experiencing " fatigue " also, so why help the

> malingerers?

That's why I think we should blow off " CFS " entirely. It's an entirey

made-up disease, constructed for political purposes that are contrary

to our interests. We should have never accepted it -- and we can

still walk away from it.

I've argued this before. I don't have CFS: I have ME, which is a

disease with a 70-year history covering scores of outbreaks on every

continent (and which also describes my specific symptoms far more

accurately than that stupid " CFS " confection concocted by the CDC).

Others here may decide they have biotoxin illness, or glutathione

insufficiency syndrome, or heavy metals poisoning. Whatever -- the

CFS ship was custom-built to drown us, and we need to get off it.

> The historical context of Myalgic Encephalomyelitis/CFS is

> extremely important

> in reclaiming the Neurological classification as well as a solid

> definition & criteria

> which as you say is available in the 2003 Consensus Criteria. It's

> also important

> in looking for the best treatments and the best diagnostic

> testing. CFS is being

> relegated into the classifications of Lethargy or a mental

> classification under the

> " leadership " of the CDC.

Why is why we jettison the whole damn thing. They can have their made-

up little disease; but we don't have to agree to it. We're free to

walk away from that definition, and put ourselves under the much more

sturdy umbrella of ME. If we did this en masse, this charade would

end. And so would the arguments.

> I had my doctor change my diagnosis to Myalgic

> Encephalomyelitis in the year 2000

> and had a brain neuro SPECT scan which was very abnormal. I then

> applied for

> disability and received it with no problems two months later on the

> basis of the diagnostic SPECT

> scan as well as some diagnostic neurocognitive testing that was

> required by the

> disability worker at Social Security.

I remember this story, and have been much inspired by it. It's a

terrific argument for why none of us should have any truck with the

CDC's silly definitions. It's all about who has the power to define

reality here: them, or us?

It's OUR reality that's being defined here, and we have a lot more

power to shape it than we think we do. They can build their leaky

definition; but there's no requirement that we climb on board,

especially not when there are other sturdy options.

> The new web site (National Alliance for Myalgic Encephalomyelitis)

> that we have recently started is to help educate patients

> and doctors in biomedical research for this disease as well as

> understanding the wider historical context of the epidemic

> outbreaks of Myalgic

> Encephalomyelitis and also to understand that there are nonroutine

> tests that are very

> clearly abnormal and diagnostic for Myalgic encephalomyelitis, all

> of which

> which the CDC seemingly denies.

> The Congressional Action is part of the help process in trying to

> turn things around

> and educate the public and patients about the disease.

> This doesn't mean that the priorities that you mention are ignored,

> but rather to at

> least fight injustice & misinformation about M.E. in some small way

> as we are able.

This is exactly the kind of thing I think we need to be doing.

Thanks for weighing in.

Sara

[Guest guest]

CBT WAS OFFERED TO ME TOOK IT UP DO NOT HELP ME

THANKS

LAVINIA

IN THE UK

--- Du Pre <isaiah40@...> wrote:

> Hello,

> Sara is correct that loving family & doing the

> things to treat the disease

> should take priority over everything else. And I

> think she is also correct in

> assessing some of the activist problems, although I

> think a lot of that is germane

> to the situation because of the CDC's active

> cover-up & misinformation which causes

> a lot of negative response and difficulty in

> unraveling the truth.

> However, I think it's a mistake to paint

> advocacy with such a broad brushstroke

> of negativity. This attitude I think could not be

> supported if we look

> at the situation with MS. If they had had this

> negative attitude about advocacy, they

> would still be dealing with the name, " Hysterics

> paralysis " or " Fakers disease "

> and they would not have pushed Congress in 1950 to

> have MS placed in the

> category of Neurological Disorders in the NIH. They

> also would have totally

> neglected the fact that the name MS had been

> suggested as the name for that disease

> in the late 1900s and they needed to go back to that

> name. In regard to M.E.,

> the recent very excellent M.E. London Conference

> (available on DVD) would not

> have taken place--activist mothers of children with

> M.E. organized that conference.

> Also, you're missing the point about CBT.

> Everyone would agree that CBT is useful

> in dealing with serious diseases. It's a whole

> different ballgame when as UK & US

> psychiatrists band together to assert that the

> combination of CBT, GET, and

> antidepressant drugs are CURATIVE and the only

> APPROPRIATE treatments

> for the disease, M.E., which is the premisethey're

> trying to sell to other

> physicians,

> that needs to be countered by concerted advocacy. I

> think this is worthy of

> the attention of the M.E. community. It's

> unfortunate that being saddled with the

> name CFS immediately tends to cause healthy

> supporters not to want to be involved

> because they are experiencing " fatigue " also, so why

> help the malingerers?

> The historical context of Myalgic

> Encephalomyelitis/CFS is extremely important

> in reclaiming the Neurological classification as

> well as a solid definition & criteria

> which as you say is available in the 2003 Consensus

> Criteria. It's also important

> in looking for the best treatments and the best

> diagnostic testing. CFS is being

> relegated into the classifications of Lethargy or a

> mental classification under the

> " leadership " of the CDC.

> I had my doctor change my diagnosis to Myalgic

> Encephalomyelitis in the year 2000

> and had a brain neuro SPECT scan which was very

> abnormal. I then applied for

> disability

> and received it with no problems two months later on

> the basis of the diagnostic SPECT

> scan as well as some diagnostic neurocognitive

> testing that was required by the

> disability worker at Social Security.

> The new web site (National Alliance for Myalgic

> Encephalomyelitis)

> that we have recently started is to help educate

> patients

> and doctors in biomedical research for this disease

> as well as

> understanding the wider historical context of the

> epidemic outbreaks of Myalgic

> Encephalomyelitis and also to understand that there

> are nonroutine tests that are very

> clearly abnormal and diagnostic for Myalgic

> encephalomyelitis, all of which

> which the CDC seemingly denies.

> The Congressional Action is part of the help process

> in trying to turn things around

> and educate the public and patients about the

> disease.

> This doesn't mean that the priorities that you

> mention are ignored, but rather to at

> least fight injustice & misinformation about M.E. in

> some small way as we are able.

> Du Pre

> Website for National Alliance for Myalgic

> Encephalomyelitis: http://www.name-us.org

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

___________________________________________________________

All new " The new Interface is stunning in its simplicity and ease of

use. " - PC Magazine

http://uk.docs./nowyoucan.html

[Guest guest]

YOU SAID IT ALL

LAVINIA IN THE UK

--- erikmoldwarrior <erikmoldwarrior@...>

wrote:

> Mercuria <mercuria@...> wrote:

>

> > The CDC's various definitions were designed as

> traps to collect

> and siphon off energy. They have done this perfectly

> for over two

> decades now. They are a waste of our time, and

> unworthy of argument.

> >

> > As a community, we need to respond collectively

> that we do not

> > consider them accurate or operative, rather than

> debate them on

> their merits (of which there are none).

> >

> > Among ourselves, we should agree that they are an

> externally-

> imposed abomination, that any disputes regarding

> them are

> deliberately and inherently unwinnable, and that

> they are unworthy

> of our time and energy.

> > Sara

> >

>

> Yes.

> I don't think of myself as a CFS activist, just

> someone who bears

> witness to what happened.

> But it was amazing to be attacked in a CFS group

> for saying that

> CFS is the name given to the illness that we had in

> Incline, and

> that no matter what distortions have occurred, if

> someone is

> thinking about the " Yuppie Flu/Incline incident "

> when they say CFS,

> then I have the right to tell them about what really

> happened rather

> than what they think happened - and what that

> illness is really

> like: Such as not being fatigue, stress and

> stressors, burnout or

> bad diet. And despite the " genetic " craze, CFS is

> something that

> swept through our community in a way that genetic

> illnesses are

> never known to do, hitting young and old. That

> would be like

> Mendel's peas acquiring mutations in the parent

> peas.

> Those of us who have decided not to accept any more

> abuse are

> probably never going to get an apology, but we do

> not intend to see

> that those who abused us are validated by a blanket

> concession

> that " CFS is fatigue " and " CFS is not ME " that some

> name blamers

> want to make in order to to escape the dreaded " f "

> word.

> Eventually there will come a point in which

> denialists will be

> afraid to say that CFS is just fatigue, because

> everyone around them

> will whip out research articles that show what a

> stupid thing to say

> that is.

> -

>

>

>

>

>

___________________________________________________________

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