Re: Tansy - psychosomatic theory

[Guest guest]

wrote in part:

" I'm starting to think maybe its all in my head. Just kidding - I just

want to understand what those people could be thinking regarding

clinical signs like these. "

, I have to be honest. The joke is not funny, and the question is

not meaningful, if you're sitting where I'm sitting.

You know perfectly well that short of a limb falling off there is

nothing a patient with our illnesses can do to 'force' physicians to

do their jobs responsibly.

They clearly do NOT think. You have my suffering and the suffering of

millions of other patients giving daily testimony to that.

The typical office visit today lasts 7 minutes.

When they are fulfilling their duties by peddling prozac, PCPs have

plenty of time for the subtle reasoning that allows a psychiatric

disorder to cause swollen glands, pitting edema, rash, muscle spasm,

elevated white counts, objectively measurable congitive impairment,

abnormal MRIs and EEGs, etc.

When you ask them to test you for Lyme disease, they are suddenly

short on time and unable to fathom how something so obscure could be

the source of all these symptoms.

I know you're aware of this on some level, because of our discussions

off list. You've presumably read my posts and Peg's and those of

countless others who have been sent away emptyhanded despite having

signs and symptoms of a grave illness.

Peg has been told she might die. I had a Medicaid PCP so struck by the

pain I was in she prescribed morphine, but despite a thorough briefing

from my LLMD enough objective findings for a small army of very sick

people she was too " uncertain as to the diagnosis " to take me on as a

patient and sent me a note saying " I am unable to care for you at this

time. "

You know all this!

You might as well ask what a hit and run driver is thinking when

instead of stopping to help the victim they speed away.

> Tansy, you seem to be sort of familiar with the " all in your head "

> thinkers of the UK. Do most people in the UK with ME have swollen

lymph

> glands and reddish throats? How do the somatization people address

> these phenomena - or do they ignore them? How about fever?

>

> Personally I've had a highly irritated throat for most of my

illness,

> and my angle-of-jaw lymph nodes have remained nicely turgid, tho I'm

> not sure theyd be noticed in a quick exam.

>

> I'm starting to think maybe its all in my head. Just kidding - I

just

> want to understand what those people could be thinking regarding

> clinical signs like these.

[Guest guest]

I'm sorry for my tone. I have been hysterical all morning because I

had a crucial neurological test scheduled at UCSF today but got

confused about the date. I woke up to this very irritated, nasal

voice on the message machine blaring at me...I can't manage, I don't

have help, their own neurology department certified my memory loss

but they won't even call me with a reminder the day before.

I was thinking it would be easier to just die, and then I couldn't

stand to think anymore, and then I came to I & I to distract myself

and there was your question.

> > Tansy, you seem to be sort of familiar with the " all in your

head "

> > thinkers of the UK. Do most people in the UK with ME have

swollen

> lymph

> > glands and reddish throats? How do the somatization people

address

> > these phenomena - or do they ignore them? How about fever?

> >

> > Personally I've had a highly irritated throat for most of my

> illness,

> > and my angle-of-jaw lymph nodes have remained nicely turgid, tho

I'm

> > not sure theyd be noticed in a quick exam.

> >

> > I'm starting to think maybe its all in my head. Just kidding - I

> just

> > want to understand what those people could be thinking regarding

> > clinical signs like these.

[Guest guest]

:

But it IS funny (the joking did about somatic illnesses).

We have to keep the humor- even if it's dark.

I can laugh now that I was diagnosed with 'hysterical pregnancy'

which was REALLY a blocked intestine.. and actually I was

(cynically) laughing about it just about the time I was waking up

from anesthesia after they managed to save me at the 11th hr. I

asked to have the Xray tech and the ER docs come up (who were mis

dxing me) and Yuk it up with me.. but they declined...

B

> > Tansy, you seem to be sort of familiar with the " all in your

head "

> > thinkers of the UK. Do most people in the UK with ME have swollen

> lymph

> > glands and reddish throats? How do the somatization people

address

> > these phenomena - or do they ignore them? How about fever?

> >

> > Personally I've had a highly irritated throat for most of my

> illness,

> > and my angle-of-jaw lymph nodes have remained nicely turgid, tho

I'm

> > not sure theyd be noticed in a quick exam.

> >

> > I'm starting to think maybe its all in my head. Just kidding - I

> just

> > want to understand what those people could be thinking regarding

> > clinical signs like these.

[Guest guest]

Pope scha has ordered a search of the Vatican, and will report

back when his sense of humor has been located, assuming it can be

revived.

You are quite right.

Pope a la Mope [at the end of his rope]

> > > Tansy, you seem to be sort of familiar with the " all in your

> head "

> > > thinkers of the UK. Do most people in the UK with ME have

swollen

> > lymph

> > > glands and reddish throats? How do the somatization people

> address

> > > these phenomena - or do they ignore them? How about fever?

> > >

> > > Personally I've had a highly irritated throat for most of my

> > illness,

> > > and my angle-of-jaw lymph nodes have remained nicely turgid,

tho

> I'm

> > > not sure theyd be noticed in a quick exam.

> > >

> > > I'm starting to think maybe its all in my head. Just kidding -

I

> > just

> > > want to understand what those people could be thinking

regarding

> > > clinical signs like these.

[Guest guest]

That's just the point : they comment upon them and but then

ignore any significance these individual findings might have.

I had one assessment years ago when my throat was reddish, lymph

glands swollen, had a low-grade fever, and lots of other stuff which

did not even get mentioned in their follow-up letter to my GP. The

local specialist was so taken aback by my apparent recovery and

normal immune studies; he redid my blood tests and requested another

EMG. Guess what? They showed the same as when I was tested before

that assessment; this took place in the early years of

selling " rehabilitation " as a cure for our false illness beliefs.

This is what they are doing now only on a national scale, with

national funding, and with our governments' approval.

So in the UK you can have lots of abnormalities come up and have

still them ignored. The tragedy is it's getting rapidly even worse

here, thanks in part to the national patient organisations who are

seen as speaking for us, when in reality they contributed to our

current demise; self interests have played a major part in this.

The potential problem for those outside the UK is the Psychologiser's

package is economically and politically attractive; it means

insurance companies and governments can refuse to pay out on

sickness/disability claims and restrict what tests and treatments

will be funded. Here in the UK it is seen as the quick cheap solution

to the pressure put on our government to do something about ME/CFIDS,

FM, GWS/S, MCS, etc. The psycologisers have swamped the UK medical

press with their hypotheses; as a result their claims have become

incorporated in official guidelines, diagnosis, and treatments.

Their influence is spreading so watch out!

Cheers, Tansy

ps yes most who fulfill the original criteria for ME (CFIDS) have

swollen lymph glands and reddish throats.

> Tansy, you seem to be sort of familiar with the " all in your head "

> thinkers of the UK. Do most people in the UK with ME have swollen

lymph

> glands and reddish throats? How do the somatization people address

> these phenomena - or do they ignore them? How about fever?

>

> Personally I've had a highly irritated throat for most of my

illness,

> and my angle-of-jaw lymph nodes have remained nicely turgid, tho

I'm

> not sure theyd be noticed in a quick exam.

>

> I'm starting to think maybe its all in my head. Just kidding - I

just

> want to understand what those people could be thinking regarding

> clinical signs like these.

[Guest guest]

I agree. I'd rather die laughing than anything else. :-)

Actually, , have you ever read any of Jay Goldstein's work? He's

right here in California and he's done a lot of research into the

whole " psychosomatic " area. He tried to explain that " psychosomatic "

doesn't mean " imagined illness " at all. It's about how the brain

functions, including the chemical and hormonal balances, etc., but

most people are in the dark ages and consider " pyschosomatic " to

mean " cuckoo " . I think he eventually changed the name to

neurosomatic, just to get past the stigma. I don't know whether any

of the UK people are broad enough in their thinking to be

considering altered brain function as an aspect or result of the

illness as Jay does, but I kind of doubt it. :-)

Jay's work is interesting becuase his treatments which altered brain

chemistry sometimes worked dramatically for people. But it seemed

short lived, the fatigue generally would return. Yet his research

could possibly shed light on some things about our illness and why

the fatigue exists. Just as Matt did, when he brought up that whole

thing about why people may be relieved of mental fatigue while on

Macrolide ABX.

Here's one link on Goldstein's work.

http://www.immunesupport.com/library/showarticle.cfm/ID/4351

There are lots more:

penny

" Barb Peck " <egroups1bp@y...> wrote:

> :

> But it IS funny (the joking did about somatic illnesses).

> We have to keep the humor- even if it's dark.

>

[Guest guest]

,

Sorry to hear that you're frustrated. We do understand, believe me.

I was hoping perhaps that the Alzheimer/Immune System news that came

out today would cheer you. One of the articles mentions that

the " brain shrinkage " could be due to the placque deposits

disappearing after the immune boosting treatment. I thought perhaps

your own " brain shrinkage " could actually be due to your immune

system winning the battle?

penny

> > > > Tansy, you seem to be sort of familiar with the " all in your

> > head "

> > > > thinkers of the UK. Do most people in the UK with ME have

> swollen

> > > lymph

> > > > glands and reddish throats? How do the somatization people

> > address

> > > > these phenomena - or do they ignore them? How about fever?

> > > >

> > > > Personally I've had a highly irritated throat for most of my

> > > illness,

> > > > and my angle-of-jaw lymph nodes have remained nicely turgid,

> tho

> > I'm

> > > > not sure theyd be noticed in a quick exam.

> > > >

> > > > I'm starting to think maybe its all in my head. Just

kidding -

> I

> > > just

> > > > want to understand what those people could be thinking

> regarding

> > > > clinical signs like these.

[Guest guest]

Yer holiness, youve cracked me up on the chatbox about 5000x more than

the whole rest of the world since I known ya. I hadnt laughed in months

before I met you, it didnt seem possible, and at first I couldnt

believe a dude like you could be able to muster even the sort of black

humor we throw around.

Well anyways, I think these scurrilous jackanapeses are worth knowing

about for practical reasons. The cerulean world of health doesnt know

us any better than Steere et al, so in general-audience discussions in

most sort of arenas I think we should be stone cold and highly

evidential: scholarly. I want to brush up on the psychosomatic school's

stuff, cause I am feeling like getting political sometime in the

future. So I plan to study those guys for just a few hours sometime. I

am gonna laugh my head off tho if I end up xeroxing some of their

publications at the library, I'll feel so silly.

" Schaafsma " <compucruz@y...> wrote:

> Pope scha has ordered a search of the Vatican, and will report

> back when his sense of humor has been located, assuming it can be

> revived.

>

> You are quite right.

>

> Pope a la Mope [at the end of his rope]

[Guest guest]

You wrote

Well studying what is going on in the UK is a good place to start,

The weasel, as he is referred to here, is part of PRISMA who have

devised a means by which instead of insurance payments rehabilitation

will be provided instead. There's an intro to what they have to

offer, and this is just what the national NHS chronic fatigue centres

are offering too.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0505b & L=co-

cure & F= & S= & P=424

> > Pope scha has ordered a search of the Vatican, and will

report

> > back when his sense of humor has been located, assuming it can be

> > revived.

> >

> > You are quite right.

> >

> > Pope a la Mope [at the end of his rope]

[Guest guest]

Oops (again!) forgot to include the quote from your message. " I want

to brush up on the psychosomatic school's stuff, cause I am feeling

like getting political sometime in the future. "

Members of the Wessely School in the UK met up with Steere in the

1980s, hence the push to adopt Steere's term CFS here as well. Here

in the UK they coined the term yuppie flu, turned out to be a big

mistake because they picked on thise most likely to fight back. That

having failed to achieve as much ground as they had hoped they went

for the opposite end of the spectrum. Following this chanbge in

direction the descritions of PWCs changed so we got Sharpe's

claim that CFS is the malingerers charter, PWCs are scroungers and

the underserving ill.

The reason they became so influential is because insurance companies

were receiving more claims, Steere, Wessely, White, Sharpe, Chalder

et al provided them with the perfect cop out.

Have fun.

> > > Pope scha has ordered a search of the Vatican, and will

> report

> > > back when his sense of humor has been located, assuming it can

be

> > > revived.

> > >

> > > You are quite right.

> > >

> > > Pope a la Mope [at the end of his rope]

[Guest guest]

" tansyap " <tansyap@y...> wrote:

> Have fun.

Thanks! I'll hold my nose and " enjoy. "

I have school stuff now and it'll be awhile before I can really dig

into anything but that... but one day I might try to get some writing

published. When I read the chief American-authored " lyme wars " texts

last month I had kind of a little political consciousness-raising

moment, got a little bit pissed off.

[Guest guest]

does that mean you'll play klingon, and i can play vulcan? i look

really spiff with pointy ears, and I was born with the eyebrows for

the job.

as a klingon, I am unconvincing...I look too pale.

scha

> > Have fun.

>

> Thanks! I'll hold my nose and " enjoy. "

>

> I have school stuff now and it'll be awhile before I can really dig

> into anything but that... but one day I might try to get some

writing

> published. When I read the chief American-authored " lyme wars " texts

> last month I had kind of a little political consciousness-raising

> moment, got a little bit pissed off.

[Guest guest]

Great posts Tansy puts in perspective the task ahead , not all bad news , this collection of diagnostic criteria for CFS has some good arguments for infection as a cause

http://www.cfids-cab.org/cfs-inform/CFS.case.def/cfs.case.def.html

I,m off for a weeks fishing tomorrow , so catch up when I get back ...

-----Original Message-----From: infections [mailto:infections ]On Behalf Of tansyapSent: 10 May 2005 23:27infections Subject: [infections] Re: Tansy - psychosomatic theoryOops (again!) forgot to include the quote from your message. "I want to brush up on the psychosomatic school's stuff, cause I am feeling like getting political sometime in the future."Members of the Wessely School in the UK met up with Steere in the 1980s, hence the push to adopt Steere's term CFS here as well. Here in the UK they coined the term yuppie flu, turned out to be a big mistake because they picked on thise most likely to fight back. That having failed to achieve as much ground as they had hoped they went for the opposite end of the spectrum. Following this chanbge in direction the descritions of PWCs changed so we got Sharpe's claim that CFS is the malingerers charter, PWCs are scroungers and the underserving ill.The reason they became so influential is because insurance companies were receiving more claims, Steere, Wessely, White, Sharpe, Chalder et al provided them with the perfect cop out.Have fun.> > > Pope scha has ordered a search of the Vatican, and will > report > > > back when his sense of humor has been located, assuming it can be > > > revived.> > > > > > You are quite right.> > > > > > Pope a la Mope [at the end of his rope]