Re: Like the NY Times article wasn't bad enough... then you got this CRAP on MSNBC

[Guest guest]

They are just jumping aboard the A_ _ hole train with the rest of them. It

seems ever since the commercials and public service announcements came out about

fibro, everyone has to bash FM to make themselves feel better..... kind of like

" OK.... I will go ahead and see how many people agree with me that this is a

made up disease....I don't care about Pfizer or the so called patients... they

don't deserve airtime " ...

Oh well, just another day to be ticked off.

love and hugs,

Debra V

alannakitty wrote:

Hats off to dubious and delusional diseases

Posted by BodyOdd on Thursday, January 24, 2008 8:00 AM PT

By Dr. Goldberg and Mark Leyner

Dr. Goldberg: Well, here it goes…Our Body Odd podcast is

becoming a blog, and now we apparently have to write something logical

and organized rather than just rambling on incessantly from one topic

to another. Or do we? This is the blogosphere isn't it? Which always

reminds me of that eco-experiment in the Arizona desert or worse the

1996 y Shore movie, " Bio-Dome. " Anyway, Leyner and I hope to

maintain the same back and forth, free-wheeling, question and answer,

educational and entertaining banter that we (and hopefully you, too)

enjoy.

Today we'll try to shed some light on a variety of syndromes with

vague, subjective symptoms and how physicians sometimes view them as

" dubious diseases. " Don't expect a clear answer.

Last week, the Centers for Disease Control and Prevention decided to

invest $338,000 to determine the truth behind Morgellons, a bizarre

skin condition where patients believe that they are infested with

bugs. Dermatologists believe it is in their minds. I have never seen a

patient who claimed to have this condition, but I have dealt with

patients who come in with a long list of ambiguous ailments that

include chronic fatigue, restless leg, irritable bowel and fibromyalgia.

Last year, the Food and Drug Administration approved the drug

pregabalin (marketed by Pfizer as Lyrica) for fibromyalgia, a

condition that primarily affects women and is characterized by muscle

pain and fatigue. A fibromyalgia diagnosis is based on clinical

symptoms alone. There are no tests to prove whether it exists or not

and nobody knows the cause. Some doctors doubt its existence. All I

know is that medicine is often imperfect.

There is so much we don't know and I never hesitate to admit that

physicians don't even come close to having all the answers. I try to

take my patient's complaints seriously, even when my instinct tells me

that the symptoms are more emotional than physical. How can you ever

truly know? I do worry sometimes that there is a danger to labeling

these conditions. It reminds me of a quote that I came across in

medical school:

" For each illness that doctors cure with medicine, they provoke ten in

healthy people by inoculating them with the virus that is a thousand

times more powerful than any microbe: the idea that one is ill. "

--Marcel Proust

Mark Leyner: It seems to me that the pharmaceutical industry and the

FDA have become the arbiters of what is and isn't a " real " disease

( " real " being a profoundly dubious concept unto itself). Now that

there's a drug being marketed to treat fibromyalgia, it went from

being a " dubious disease " to a bona fide " clinical syndrome, " albeit

an idiopathic one (i.e. with no known causes). To some degree, until

there's a drug to treat it, a disease is not officially recognized.

It's marginalized, ghettoized and generally disparaged and ridiculed

as " dubious. "

All of this appears to be much more economically and culturally

determined than purely scientific. We really have to pay close

attention to the economic etiology of disease – the pharmaceutical

chicken-and-egg syndrome.

First comes the drug, then the efflorescing " indications, " and then

the new official diseases and syndromes. The mere act of giving

something a name seems to confer legitimacy. But one of the hallmarks

of a " dubious disease " is many names. Fibromyalgia was known by whole

host of other names: including fibrositis; chronic muscle pain

syndrome; psychogenic rheumatism; and tension myalgias.

Of course, the technical chime of an acronym confers a powerful form

of official status. There's ADD (attention deficit disorder), OCD

(obsessive-compulsive disorder), SAD (social anxiety disorder and

seasonal affective disorder), CFS (chronic fatigue syndrome), ME

(myalgic encephalomyelitis), ITFS (itchy trigger finger syndrome),

WWMD (wicked witch melting disorder), etc.

Take RLS (restless leg syndrome), for example. RLS is a nice,

officially recognized, albeit idiopathic syndrome. It's got two nice

official drugs, Ropinirole (marketed as Requip) and Pramipexole

(marketed as Mirapex and Sifrol) – both dopamine-agonists used to

treat Parkinson's disease – that now have FDA-approved indications to

treat it. And, best of all, RLS (like all acronymic diseases and

syndromes) make perfect mitigating defense arguments. " Ladies and

gentlemen, I ask you, how restless do a person's legs have to get

before he just snaps and lashes out at the person lying next to him? "

So, yeah, the CDC is now paying Kaiser Permanente to investigate this

absolutely fascinating condition called Morgellons, which involves the

sensation of insects crawling all over you and erupting sores from

which sprout multi-colored fibers! Most doctors seem to think this is

all some bizarre shared delusional parasitosis (a psychosis in which

people believe they're infected with parasites). If it is indeed a

shared delusion, all the better, I say.

It's generally considered to be vulgar and " kooky " to invent your own

disease. But I've always thought that it's a fantastic form of

self-invention and self-definition. If we can be " well " in

multifarious ways, we should be able to be " sick " in multifarious

ways. Those designations shouldn't be the exclusive prerogative of

some doctor or the FDA. Just because it doesn't have a DRG-code (a

health insurance diagnosis code) doesn't mean you can't claim to have

it. In fact, the more dubious and delusional an illness is, the more

appeal it has for me. I'm a fanatical proponent of the UFO-ization of

medicine.

How about those UFO-sightings in ville, Texas? Several dozen

people saw the thing, including a pilot and a county constable. A

county constable! Is there a more credible paragon of sobriety and

probity in this god-forsaken world than a county constable? If a

county constable said he had sores all over his body with red, white

and black threads spouting out of them, you'd believe him, right? But

if some New Jersey housewife in curlers, puffing on a Marlboro Light,

says the same thing, well, she's suffering from " delusional

parasitosis. " It's so obviously unfair.

Creating pathological identities for ourselves is an august and

complex endeavor. Disease distinguishes us from the herd. It makes us

unique. In this demeaning, tabloid-consuming, star-crazed world, it

can be our weapon against terminal anonymity. It can make celebrities

of us all and, conversely, afford solidarity with our afflicted

brethren. Someday, pathology will replace ideology and ethnicity, and

candidates will have to pander to fibromyalgia sufferers and social

phobics, instead of Hispanics and social conservatives.

So, hats off to all dubious, delusional and purely psychosomatic diseases.

You know the joke, right? A guy goes to doctor complaining of a whole

host of symptoms that's he's been suffering from for months. The

doctor examines him and says, " Listen, I can't find anything wrong

with you. You just think you're sick. " The guy goes home. A few weeks

later, he's back at the doctor's office. " I feel terrible, " he says.

" All my symptoms are getting much worse. " The doctor gives him another

thorough exam and shakes his head. " You're absolutely fine. You just

think you're getting worse. " About two months later, the patient's

brother is walking down the street and he runs into the doctor. " How's

your brother doing, " the physician asks. The brother looks at the

doctor and replies: " He thinks he's dead. "

***Though it says " comments " I don't see a way to leave any***

I know these guys tend to be flakes in some way but dammit... I don't

need to hear or be told that my syndrome/symptoms are all in my

freakin' head. Tell that to the sore on my toe from Raynaud's. Tell

that to my body that wakes up every morning feeling like I've beaten

and not in a happy fun way. Try feeling like you have the flu

everyday and then like your brain is pushing through sludge.

This just isn't right. Does the media and society have nothing better

to do but judge us and act superior?

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

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

-- Like the NY Times article wasn't bad enough... then you got

this CRAP on MSNBC

Hats off to dubious and delusional diseases

Posted by BodyOdd on Thursday, January 24, 2008 8:00 AM PT

By Dr. Goldberg and Mark Leyner

Dr. Goldberg: Well, here it goes…Our Body Odd podcast is

becoming a blog, and now we apparently have to write something logical

and organized rather than just rambling on incessantly from one topic

to another. Or do we? This is the blogosphere isn't it? Which always

reminds me of that eco-experiment in the Arizona desert or worse the

1996 y Shore movie, " Bio-Dome. " Anyway, Leyner and I hope to

maintain the same back and forth, free-wheeling, question and answer,

educational and entertaining banter that we (and hopefully you, too)

enjoy.

Today we'll try to shed some light on a variety of syndromes with

vague, subjective symptoms and how physicians sometimes view them as

" dubious diseases. " Don't expect a clear answer.

Last week, the Centers for Disease Control and Prevention decided to

invest $338,000 to determine the truth behind Morgellons, a bizarre

skin condition where patients believe that they are infested with

bugs. Dermatologists believe it is in their minds. I have never seen a

patient who claimed to have this condition, but I have dealt with

patients who come in with a long list of ambiguous ailments that

include chronic fatigue, restless leg, irritable bowel and fibromyalgia.

Last year, the Food and Drug Administration approved the drug

pregabalin (marketed by Pfizer as Lyrica) for fibromyalgia, a

condition that primarily affects women and is characterized by muscle

pain and fatigue. A fibromyalgia diagnosis is based on clinical

symptoms alone. There are no tests to prove whether it exists or not

and nobody knows the cause. Some doctors doubt its existence. All I

know is that medicine is often imperfect.

There is so much we don't know and I never hesitate to admit that

physicians don't even come close to having all the answers. I try to

take my patient's complaints seriously, even when my instinct tells me

that the symptoms are more emotional than physical. How can you ever

truly know? I do worry sometimes that there is a danger to labeling

these conditions. It reminds me of a quote that I came across in

medical school:

" For each illness that doctors cure with medicine, they provoke ten in

healthy people by inoculating them with the virus that is a thousand

times more powerful than any microbe: the idea that one is ill. "

--Marcel Proust

Mark Leyner: It seems to me that the pharmaceutical industry and the

FDA have become the arbiters of what is and isn't a " real " disease

( " real " being a profoundly dubious concept unto itself). Now that

there's a drug being marketed to treat fibromyalgia, it went from

being a " dubious disease " to a bona fide " clinical syndrome, " albeit

an idiopathic one (i.e. with no known causes). To some degree, until

there's a drug to treat it, a disease is not officially recognized.

It's marginalized, ghettoized and generally disparaged and ridiculed

as " dubious. "

All of this appears to be much more economically and culturally

determined than purely scientific. We really have to pay close

attention to the economic etiology of disease – the pharmaceutical

chicken-and-egg syndrome.

First comes the drug, then the efflorescing " indications, " and then

the new official diseases and syndromes. The mere act of giving

something a name seems to confer legitimacy. But one of the hallmarks

of a " dubious disease " is many names. Fibromyalgia was known by whole

host of other names: including fibrositis; chronic muscle pain

syndrome; psychogenic rheumatism; and tension myalgias.

Of course, the technical chime of an acronym confers a powerful form

of official status. There's ADD (attention deficit disorder), OCD

(obsessive-compulsive disorder), SAD (social anxiety disorder and

seasonal affective disorder), CFS (chronic fatigue syndrome), ME

(myalgic encephalomyelitis), ITFS (itchy trigger finger syndrome),

WWMD (wicked witch melting disorder), etc.

Take RLS (restless leg syndrome), for example. RLS is a nice,

officially recognized, albeit idiopathic syndrome. It's got two nice

official drugs, Ropinirole (marketed as Requip) and Pramipexole

(marketed as Mirapex and Sifrol) – both dopamine-agonists used to

treat Parkinson's disease – that now have FDA-approved indications to

treat it. And, best of all, RLS (like all acronymic diseases and

syndromes) make perfect mitigating defense arguments. " Ladies and

gentlemen, I ask you, how restless do a person's legs have to get

before he just snaps and lashes out at the person lying next to him? "

So, yeah, the CDC is now paying Kaiser Permanente to investigate this

absolutely fascinating condition called Morgellons, which involves the

sensation of insects crawling all over you and erupting sores from

which sprout multi-colored fibers! Most doctors seem to think this is

all some bizarre shared delusional parasitosis (a psychosis in which

people believe they're infected with parasites). If it is indeed a

shared delusion, all the better, I say.

It's generally considered to be vulgar and " kooky " to invent your own

disease. But I've always thought that it's a fantastic form of

self-invention and self-definition. If we can be " well " in

multifarious ways, we should be able to be " sick " in multifarious

ways. Those designations shouldn't be the exclusive prerogative of

some doctor or the FDA. Just because it doesn't have a DRG-code (a

health insurance diagnosis code) doesn't mean you can't claim to have

it. In fact, the more dubious and delusional an illness is, the more

appeal it has for me. I'm a fanatical proponent of the UFO-ization of

medicine.

How about those UFO-sightings in ville, Texas? Several dozen

people saw the thing, including a pilot and a county constable. A

county constable! Is there a more credible paragon of sobriety and

probity in this god-forsaken world than a county constable? If a

county constable said he had sores all over his body with red, white

and black threads spouting out of them, you'd believe him, right? But

if some New Jersey housewife in curlers, puffing on a Marlboro Light,

says the same thing, well, she's suffering from " delusional

parasitosis. " It's so obviously unfair.

Creating pathological identities for ourselves is an august and

complex endeavor. Disease distinguishes us from the herd. It makes us

unique. In this demeaning, tabloid-consuming, star-crazed world, it

can be our weapon against terminal anonymity. It can make celebrities

of us all and, conversely, afford solidarity with our afflicted

brethren. Someday, pathology will replace ideology and ethnicity, and

candidates will have to pander to fibromyalgia sufferers and social

phobics, instead of Hispanics and social conservatives.

So, hats off to all dubious, delusional and purely psychosomatic diseases.

You know the joke, right? A guy goes to doctor complaining of a whole

host of symptoms that's he's been suffering from for months. The

doctor examines him and says, " Listen, I can't find anything wrong

with you. You just think you're sick. " The guy goes home. A few weeks

later, he's back at the doctor's office. " I feel terrible, " he says.

" All my symptoms are getting much worse. " The doctor gives him another

thorough exam and shakes his head. " You're absolutely fine. You just

think you're getting worse. " About two months later, the patient's

brother is walking down the street and he runs into the doctor. " How's

your brother doing, " the physician asks. The brother looks at the

doctor and replies: " He thinks he's dead. "

***Though it says " comments " I don't see a way to leave any***

I know these guys tend to be flakes in some way but dammit... I don't

need to hear or be told that my syndrome/symptoms are all in my

freakin' head. Tell that to the sore on my toe from Raynaud's. Tell

that to my body that wakes up every morning feeling like I've beaten

and not in a happy fun way. Try feeling like you have the flu

everyday and then like your brain is pushing through sludge.

This just isn't right. Does the media and society have nothing better

to do but judge us and act superior?

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at

the same time when it comes to flares and b/c of that potentially take

something another member says the wrong way. And that includes the things

that one member may find funny (even if it's laughing at fibro itself) even

though we who deal with illness whether one such as fibro or multiple

illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls

let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

Ya and SADS (stupid a$$ doctor syndrome)!

-------Original Message-------

Of course, the technical chime of an acronym confers a powerful form

of official status. There's ADD (attention deficit disorder), OCD

(obsessive-compulsive disorder), SAD (social anxiety disorder and

seasonal affective disorder), CFS (chronic fatigue syndrome), ME

(myalgic encephalomyelitis), ITFS (itchy trigger finger syndrome),

WWMD (wicked witch melting disorder), etc.