Fwd: CO-CURE Digest - 17 Jul 2002 - Special issue (#2002-211)

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CO-CURE Digest - 17 Jul 2002 - Special issue (#2002-211)

CO-CURE Digest - 17 Jul 2002 - Special issue (#2002-211)

Table of contents:

ACT: Lesson from Melvin Ramsay

MED: Dr Shepherd -Flu Jabs

RES: Discrimination FM via cerebrospinal chemicals

NOT: New Series: What Works for Managing CFIDS and Fibromyalgia

ACT: MEDIA ALERT--ELLE Magazine

ACT: The Thin, Successful Woman's Disease

MED: Chronic Fatigue Syndrome: Evaluation and Treatment

ACT: The Thin, Successful Woman's Disease (2)

ACT: Lesson from Melvin Ramsay

ACT: Lesson from Melvin Ramsay [via Co-Cure Moderators

MED: Dr Shepherd -Flu Jabs

MED: Dr Shepherd -Flu Jabs

RES: Discrimination FM via cerebrospinal chemicals

RES: Discrimination FM via cerebrospinal chemicals

NOT: New Series: What Works for Managing CFIDS and Fibromyalgia

NOT: New Series: What Works for Managing CFIDS and Fibromyalgia

ACT: MEDIA ALERT--ELLE Magazine

ACT: MEDIA ALERT--ELLE Magazine via Co-Cure Moderators"

ACT: The Thin, Successful Woman's Disease

ACT: The Thin, Successful Woman's Disease via Co-Cure Moderators"

MED: Chronic Fatigue Syndrome: Evaluation and Treatment

MED: Chronic Fatigue Syndrome: Evaluation and Treatment

ACT: The Thin, Successful Woman's Disease (2)

ACT: The Thin, Successful Woman's Disease (2)

Browse the CO-CURE online archives.

I sincerely hope that the three UK charities will not regret their decision

to accept the composition of the MRC panel. Melvin Ramsay was told by a

colleague that he would regret giving the reports of some of the Royal Free

patients to two young psychiatrists, but at the time he thought they would

be objective and fair. We know what happened and he did regret his decsion.

In this case, the three charities were offered constructive advice from well

meaning, knowledgeable experts who KNEW, not guessed, that two of the

participants were not fresh to the field and that both had a track record in

relation to the research. There is no neurologist, neuroradiologist, not

even a stress specialist to consider studies on cortisol. Polite letters

from professionasl querying the panel have not been answered.

Those who do not agree with the three charities are not all irrational and

stupid. It's sad they should make it appear as though they are. A few may

be. It's no reason to dismiss the ideas of the concerned experts.

Those who don't learn from mistakes....

Ellen Goudsmit

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

For information about ME and CFS, see:

http://freespace.virgin.net/david.axford/me/me.htm

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Flu Jabs

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

Dr Shepherd MEA

As vaccinations mimic the effect of infections on the body's

immune response it's not too surprising to find that they do

sometimes trigger ME/CFS or cause a relapse of existing

symptoms.

My main interest in this area is with hepatitis B vaccine, and I

now have around 80 people - mainly health workers - who

predate the onset of their ME/CFS (+/- joint problems) to this

particular jab.

As far as flu vaccine is concerned, I carried out a small survey

(not scientific - just feedback from MEA members who'd been

given a flu jab that autumn) a few years ago. Results:

7/21 had no problems at all.

13/21 reported an exacerbation of symptoms - 3 were mild; 7

were moderate; 3 were severe.

1/21 was interesting in that this teenager reported a significant

and continuous improvement following the jab.

Advice to my own ME/CFS patients this coming autumn (the

vaccine will be available in late September/early October) is

that they need to weigh up the pros and cons in each individual

case as a a dose of flu could also cause a relapse of ME/CFS.

Flu vaccine would normally be very advisable for anyone with

another chronic illness such as diabetes, kidney, heart, chest

disease, or for anyone taking steroids. And if you've had a flu

jab in the past and been OK, then you may well be alright this

time round.

I don't usually advise people with ME/CFS to have a flu jab if

they're experiencing a lot of flu or infection-like symptoms such

as sore throats, glands, problems with temperature control.

Incidentally, some docs who treat HIV/AIDS also take a very

cautious view about flu vaccine because the immune system

stimulation it creates could result in an increased production of

HIV.

As for myself, I'm not going to have a flu jab this year.

If you want to know more about the links between ME/CFS and

vaccinations~check out a fairly comprehensive review - Is CFS

linked to Vaccinatins? - I wrote for The (US) CFS Research

Review (Winter 2001, pp 6 - 8). It should still be available

on-line at the CFIDS website: www.cfids.org

[JvR: see below]

Shepherd

~~~~~~~~~~~~~~~~~~~~~~~~

Source:

http://www.cfids.org/archives/2001rr/2001-rr1-article03.asp

Is CFS Linked to Vaccinations?

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

By Shepherd, MD,

ME Association, United Kingdom

There is widespread agreement that a variety of infections are

capable of precipitating chronic fatigue syndrome (CFS) in

susceptible individuals. In l988, Lloyd et al reported that several

of their patients had linked the onset of CFS to receiving a

vaccination in the absence of any coincidental infection.l Since

then, other anecdotal reports have also linked vaccinations to

the onset of CFS.2,3

The explanation for vaccine-induced CFS may be because the

primary purpose of any vaccine is to mimic the effects of

infection on the immune system. If an antigenic challenge by

infection can precipitate CFS, then it is conceivable that

vaccines could act in a very similar manner.

This reasoning is further strengthened by the fact that

immunologically based illnesses, such as arthritis, can occur

when a susceptible host and an environmental trigger, such as

an infection or vaccination, interact.4 It is also interesting to

note that vaccinations have been suggested as a possible

precipitating factor in the development of Gulf War illness.

Causal vaccines

My research interest in this aspect of developing CFS is

largely based on clinical evidence from patients seen in my

practice over the past 10 years. As a result, I have gathered

details on more than 200 patients with a history of either

developing CFS or experiencing a significant

relapse/exacerbation of CFS symptoms following a

vaccination.

In addition, I have more than 150 reports referring to such a link

from members of myalgic enceph-alomyelitis (ME) or CFS

self-help support groups and/or their physicians throughout the

world.

This data (although unpublished) suggests that tetanus,

typhoid, influenza, and hepatitis B are the most commonly

implicated vaccines in cases of CFS. I have reports of very few

cases involving hepatitis A (using immunoglobulin), polio, or

rubella vaccine, or those predominantly given during

childhood--with the possible exception of Bacillus

Calmette--Guerin vaccine (three cases).

Almost all of my cases involve adults, and in a significant

minority the vaccine was administered when the person had

not yet fully recovered from an infective illness such as

infectious mononucleosis (known as glandular fever in the U.K.)

or had already experienced an adverse reaction to a previous

dose of the same vaccine (as is sometimes the case with

hepatitis B accine).

About one third of my cases involve

vaccine-induced/exacerbated CFS following receiving the

hepatitis B vaccine (HBV). Most of these patients are health

care workers, particularly nurses. Most of the other patients

received HBV for occupational health purposes, often as a

condition of employment and without any information on side

effects, such as severe neurological reactions.

The prognosis in this group has been poor, with less than 10%

of the patients I have personally followed reporting any

significant relief of CFS symptoms.

Although chronic debilitating fatigue is the most frequently

reported symp-tom of CFS after vaccine administration in this

group, around 20% also complained of significant joint

pain/arthralgia, a finding consistent with several reports linking

HBV to arthritis and other autoimmune disorders.5

Less than 5% of the patients also reported neurological

complications/side effects such as tremors or one-sided

weakness, which appear to be separate from their CFS

symptoms.

For instance, one female patient developed an acute

disseminated inflammation of the brain and spinal cord

(encephalo-myelitis) shortly after the second dose of vaccine.

This was followed by the gradual onset of CFS.

Hepatitis vaccines are highly immunogenic compounds, and a

number of possible explanations exist as to why they may be

more likely to trigger CFS.

One explanation involves a preexisting genetic susceptibility,

which after antigenic stimulation with HBV, results in a

pathological process (possibly involving immune complex

formation) leading to a clinical disease.

Another explanation is that a hypersensitivity reaction occurs to

a component of HBV, such as the preservative thimerosal.6

Researchers in Canada, who made similar observations of a

link between HBV and CFS, hypothesized that this may involve

an autoimmune reaction with a microscopic form of

demyelination not visible on magnetic resonance imaging.7

Despite growing anecdotal evidence from other experienced

physicians who also believe that HBV can precipitate CFS,2

vaccine manufacturers do not acknowledge any causal link. In

fact, a report by an independent working group in Canada that

dismissed any such causal link is frequently quoted as a

reason for dismissing these claims, even though it contained

some very questionable assumptions to support the

conclusions.8

For example, the report inaccurately states that chronic carriers

of hepatitis B infection without signs of ongoing liver damage

do not complain of tiredness. The report also uses results from

a one-week follow-up study of 700 health care students, which

found excessive short-term tiredness in about 14% after

vaccination with HBV to refute any link with chronic fatigue.

Practical advice

Health care providers caring for CFS patients who require

vaccinations clearly must weigh the pros (i.e., how effective?

how necessary?) and cons (i.e., risks of adverse effects and

exacerbation of CFS symptoms) for each individual vaccine. I

would advise against having routine nonessential vaccinations

if a patient is:

*

In the very early stages of CFS, particularly when it

obviously follows an infective episode;

*

Continuing to experience flulike symptoms, including sore

throat, enlarged glands, fevers, and joint pains; or

*

Has previously experienced an adverse reaction to that

particular vaccine.

If the vaccination is potentially lifesaving, then considerations

relating to CFS must take a lower priority. As for some of the

more commonly required vaccines, my advice on their use is

as follows:

Hepatitis A. Short-lived protection using immuno-globulin does

not seem to cause any problems in CFS patients. I have not

received any adverse feedback from CFS patients who have

used hepatitis A vaccine.

Hepatitis B. If a patient requires HBV for occupational health

purposes, clinicians should weigh the pros and cons as

previously discussed and then discuss with the patient.

Influenza. If a patient has any medical condition that could be

severely affected by an attack of the flu, such as heart disease,

asthma, or bronchitis, influenza vaccine should certainly be

considered.

My own data indicates approximately 60% of CFS patients

experience some form of exacerbation in their fatigue and

flulike symptoms (sometimes quite marked) following an

influenza vaccine.

Meningitis C. My feedback from approximately 30 children and

adolescents with CFS who have been given the meningitis C

vaccine in the U.K. is that there were no serious side effects or

exacerbations of CFS symptoms. The only adverse effects

reported have been minor exacerbations of fatigue and

headache.

Polio and diphtheria. One research study showed evidence

that people with CFS do not experience adverse reactions to

polio vaccination.9 This is also my own impression from

feedback received from patients I have advised receive polio

boosters in relation to foreign travel.

Polio vaccinations or boosters should clearly be given to

patients traveling to countries where polio still occurs. The

same advice applies to diphtheria, which is becoming

increasingly common in parts of Eastern Europe.

Tetanus. Maintaining up-to-date protection is vital for

individuals whose employment (e.g., working on a farm) or

leisure activity (e.g., gardening) places them at risk of

contracting tetanus.

However, tetanus vaccine can produce side effects in healthy

people and may well cause CFS patients to relapse. The pros

and cons need to be carefully considered as tetanus vaccine

has been reported to precipitate CFS.1,2

Typhoid. The typhoid vaccine can cause side effects in healthy

people. The feedback I received from my CFS patients,

however, indicates that the oral form of typhoid vaccine was

generally well tolerated.

Whenever vaccinations are considered necessary, they should

be given when CFS patients are feeling reasonably well and

not under any undue stress. It is also wise to make sure that all

travel vaccinations are completed at least two weeks before

departure in the event a patient experiences exacerbated

symptoms or a relapse.

Not surprisingly, patients with possible vaccine-induced CFS

often face considerable difficulty in obtaining disability benefits

on the grounds of permanent ill health. However, some of my

patients in the U.K. have successfully argued their cases and

been awarded injury payments on the grounds that HBV given

for occupational health reasons caused their CFS. I am also

involved in a number of cases where the debate is likely to be

settled in court.

References

1.

Lloyd A et al. What is myalgic encephalomyelitis? Lancet.

l988; l: 1286-7.

2.

Weir W. The post-viral fatigue syndrome. Current Medical

Literature: Infect Dis. l992; 6: 3-8.

3.

CIBA Foundation. Chronic Fatigue Syndrome. Eds. Bock

GR et al. J Wiley; l993; symposium 173.

4.

Symmons DPM et al. Can immunisation trigger

rheumatoid arthritis? Ann Rheum Dis. l993; 52: 843-844.

5.

Gross K et al. Arthritis after hepatitis B vaccination. Scand

J Rheum. l995; 24: 50-2.

6.

Grotto I et al. Major adverse reactions to yeast-derived

hepatitis B vaccines-a review. Vaccine. l998; 16: 329-34.

7.

Hyde B. The clinical investigation of acute onset ME/CFS

and MS following recombinant hepatitis B immunisation.

Second World Congress on CFS and Related Disorders,

Brussels. 1999; September 9-12.

8.

Report of the working group on the possible relationship

between hepatitis B vaccination and the chronic fatigue

syndrome. Canad Med Assoc J. l993; 149: 314-9.

9.

Vedhara K et al. Consequences of live poliovirus vaccine

administration in chronic fatigue syndrome. J Neuroimmun.

l997; 75: 183-95.

Dr. Shepherd is in private practice in the United

Kingdom (U.K.) and is a member of the Chief Medical

Officer's Working Group on CFS/ME at the U.K. Department of

Health.

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Source: FMS Community Newsletter #23, July 6, 2002

Discrimination of FM patients from normal

controls using levels of cerebrospinal chemicals

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

MYOPAIN - Abstracts by T.S. Kuan, Z. Vukimirovic, Y.M. Xiao,

R.A. Lawrence, and I.J.

In this thought-provoking study, researchers from San ,

Texas, set out to predict which neurochemicals from the

cerebrospinal fluid (CSF) could discriminate FM patients from

healthy normal controls.

Drawing on a large bank of CSF samples from

medication-free FM patient and healthy normal controls, they

selected a sample of demographically matched FM patients

(28) for their study.

The three neurochemicals which they found best discriminated

fibromyalgia from healthy normal controls were: Substance P

(SP), nerve growth factor (NGF), and 5-hydroxyindole acetic

acid (5HIAA). The researchers determined that the best

formula for these three neurochemicals was: Log[y/1-y] =

-7.156 + 0.359 (SP) + 0.051 [NGF] -0.067 [HIAA].

This formula distinguished FM patients from healthy controls

with 90.6% accuracy, an accuracy comparable to that of the!

ACR's 1990 criteria. The Texas research group noted that the

new formula not only provided a new study tool for fibromyalgia

research but also served as additional evidence of FM as a

clinical disorder with objective neurochemical abnormalities.

This abstract is reprinted with permission from Fibromyalgia

Frontiers, Vol. 9, # 4, the official publication of the National

Fibromyalgia Partnership.

Check it out: http://fmpartnership.org/FMPartnership.htm

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FMS Community Newsletter:

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

Subscription update: 1705 subscribers and 28 new

subscribers. Welcome!

Members of the FMS community have generously contributed

$173.80 in order to keep the site and newsletter running, but

we still need your help. Please help keep the FMS Community

alive by making a contribution if you are able; any amount will

help. Please go to: http://www.fmscommunity.org/contributions.htm

to see how you can pitch in.

~~~~~~~~~~~~~~~~~~~~~

What works for managing CFIDS and fibromyalgia? Read some answers in an

eight-part series of articles beginning this week at our site:

www.cfidsselfhelp.org. The series offers some practical ideas from the over 500

people who have taken our self-help course in recent years, sharing what they

have found useful in living with long-term illness. You'll learn what fellow

patients have found helps them in areas such as pacing, achieving goals,

controlling symptoms, reducing and preventing stress, managing emotions,

improving relationships and minimizing relapses.

Bruce , Ph.D.

CFIDS/Fibromyalgia Self-Help Program

MEDIA ALERT

The August 2002 issue of ELLE magazine features an article by Judith

Warner, " The Thin, Successful Woman's Disease, " that suggests the cause of

'invisible illnesses' such as CFIDS and FM is really psychological and

anxiety-based. Warner recounts her experience seeking a diagnosis, and

implies that many women fixate on being ill when physicians cannot find a

cause for their symptoms, which prevents them from addressing their 'real

problems.'

Warner claims that illnesses such as CFIDS and FM " ...are a cop-out-a way

to assuage anxiety without having to address it. " She sums up her viewpoint

by saying, " There are times in your life when you can't-or won't-stop

banging your head against the wall. And at those times it is more

comforting to think that you suffer from a syndrome than to admit your own

shortcomings and inability to change. "

To read a copy of the article, go to:

http://www.elle.com/inthemag/articles/August/thin_successful.asp

The CFIDS Association of America sent a letter to the editor of ELLE

correcting Warner's assertion that CFIDS and FM are psychological in origin

and stating that she is harming millions of individuals with

difficult-to-diagnose illnesses by suggesting that when medical science

cannot explain their symptoms they must be inflicting them upon themselves.

The Association also informed the editors that CFIDS and FM patients are

not benefiting from their illness and possibly even enjoying their

martyrdom, as Ms. Warner suggests in her article, but would instead give

anything to recover from the living hell their lives have become. The

Association is contacting the magazine's editors directly to further

educate them about CFIDS.

Brehio

Director of Communications

The CFIDS Association of America

Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398

Voice Mail:

Resource Line:

Fax:

Web: www.cfids.org

General E-mail: info@...

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[JvR: This needs protest from many, many patients and

physicians. The CFIDS Association of America has sent

already a letter to the editor of ELLE correcting Warner's

assertion that CFIDS and FM are psychological in origin ]

Source: http://www.elle.com/inthemag/articles/August/thin_successful.asp

ELLE

Magazine

August 2002

Author: Judith Warner

" The Thin, Successful Woman's Disease, "

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

After years of being tagged with every fashionable affliction

from childhood sexual abuse to mitral valve prolapse

syndrome, Judith Warner wonders whether a fixation on

symptoms is preventing us from getting to the real problem

In September 2001, my hair started falling out. I broke out in

hives--red-and-white, quarter-size welts every night at 11:30;

huge, sudden, elephantine swellings of my lips when I had work

appointments or dinner parties or, quite simply, needed to be

somewhere on time.

I had no doubt as to the cause of my symptoms, which my

husband and I privately dubbed " hysterical lip. " I hadn't felt well

for about a year, ever since we'd abruptly moved from Paris to

Washington, DC, where, by default and for the first time in my

life, I had become a stay-at-home mom.

I had few writing contacts; the economy was in the dumps; then

came September 11th. I lay awake at night counting out in my

mind the fifteen seconds I'd heard it took the people who'd

jumped to hit the ground. What could you see in fifteen

seconds? How much of your life could you revisit, how much

time could you spend recalling the faces, the voices of your

children?

I visited a dermatologist, who found the double whammy of

hives and hair loss " intriguing " but inexplicable. " It's anxiety, " I

said.

I went to an allergist, who shrugged. " It's anxiety, " I said.

" I don't like to give anxiety diagnoses, " he answered. But, after

a battery of blood tests and skin pricks (costing about the

same as a week-long vacation in Miami) turned up nothing, he

did make a suggestion. My medical history was marked by

headaches, fatigue, irritable bowel syndrome, and mitral valve

prolapse, a benign heart condition that arises when the valve

that separates the left auricle and ventricle doesn't close

properly. The doctor had once read something about these

symptoms occurring together. He'd seen it in the women in his

family, some kind of syndrome. " It's funny, " he said. " It seems to

affect thin, high-achieving women. "

Thin, high-achieving women?

The allergist couldn't solve the riddle of my hives ( " They'll go

away; they always do " ), but I nonetheless left his office feeling

strangely elated. I was sharing a condition with " thin,

high-achieving women. " And this knowledge, coming at such a

low-achieving point in my life, felt like a Harvard degree.

It also felt familiar. This wasn't the first time I'd been " awarded "

an all-embracing explanation for my ills--and the prospect of

what lay ahead filled me with excitement, as well as a twinge of

foreboding.

At home surfing the Internet, I expected to have to wade

through obscure medical journals to find my exclusive new

diagnosis. But no--in half a second, there it was: mitral valve

prolapse syndrome, complete with Web sites, personal

testimonials, support groups, and a mini-library of

recommended reading ranging from scientific articles to

self-help books. " You are not alone! " shouted a sufferer on

Mvpsupport.com, who wrote of experiencing " validation " when

her MVP was detected. Another woman, on Ilovejesus.com,

noted that just three months after she landed her

MVP-syndrome diagnosis, years worth of symptoms vanished.

" It is truly God's grace, " she wrote.

I had never paid much attention to my mitral valve prolapse,

which was picked up by my internist in 1995 and confirmed by

an echocardiogram. It isn't a very sexy condition, has almost no

symptoms, and in most cases carries few serious health risks.

But mitral valve prolapse syndrome--now this was something

else. It was dramatic: " One minute you can be feeling fine, and

the next thing you know you're ready to run out the door and

scream, " instructed one support site. It was pervasive: rampant

among women who were " tall and thin " with " long arms and

fingers, " possessed of a " curved spine " or, failing that, a

" straight back. " It was insidious: among the symptoms, " feeling

too hot or too cold (not related to weather), " frequent mood

swings, allergies, a " spaced-out feeling, " and a " sweet-tooth

tendency. " Even more insidious, it didn't necessarily have

anything to do with the mitral valve, or its prolapse. " New

studies, " I read, " suggest that most people diagnosed with

mitral valve prolapse syndrome probably have mitral valve

floppiness (instead of true mitral valve prolapse) that is caused

by dysautonomia, an imbalance in the autonomic nervous

system (the fight-or-flight system) that can cause your body to

be extremely sensitive to stimuli such as stress, caffeine,

sugar, low blood volume (dehydration), medications, et cetera. "

" Dysautonomia " sounded an awful lot like anxiety. Indeed, the

most typical symptom of the syndrome was, basically, panic

attacks, and the fallback treatment was Prozac--along with a

supermarket shopping list of medications, starting with the

SSRIs and beta-blockers and including a stop in the

anti-anxiety aisle (Ativan, Librium, Valium).

It's common knowledge that anxiety causes very real physical

complaints. Surging adrenaline increases muscle tension and

breathing rate, and restricts blood flow to the intestines, which

brings on gastric distress. The heightened autonomic activity

also makes the heart beat differently, a change that scientists

such as Laszlo Papp, associate professor of psychiatry and

director of the biological studies unit at Columbia University's

medical school, now believe leads to mitral valve malfunction.

If you treat people with what Papp calls the " mitral valve

personality " with anti-anxiety meds, their prolapse will

frequently resolve as their anxiety abates. The same goes for

chronic fatigue and irritable bowel syndrome sufferers--give

them these medications, and they get better, too, he says. " It's

not contested anymore that psychological factors affect heart

functions, " Papp says. " People who were diagnosed with

neurasthenia or 'soldier's heart' in the past--or with the whole

complex of autonomic nervous system disorders today--often

suffer from anxiety and mood disorders. "

The proof, one might say, is in the palpitations. But the

consensus in the MVP-syndrome community is equally firm;

anxiety is a symptom of dysautonomia, not the other way

around. " Mitral valve prolapse syndrome is a physical

condition--not a psychological one, " insists Mvpsupport.com.

" It's not all in your head. "

I really would have liked to believe this. It would, after all, have

been nice to have a diagnosis that held the promise of an

Answer, with, presumably, a cure. It would have been

particularly nice to embrace the answer proposed by the MVP

evangelicals: Accept my symptoms, let my " dysautonomia "

dictate my life. Give up writing, for starters (too stressful).

Demand that my family give me the time and space to Relax

and Recover. Get my husband to quit his job and minister to

me.

But the urge to surrender lasted about as long as it took to

move from the vulvalike graphics of Geocities.com's mitral

valve prolapse page to Mvpsupport.com's hyperlink to the

Highly Sensitive Person Workbook. The aha! tone, the shifty

symptoms, the us-versus-the-world spirit of the sufferers--it

was too neat, too simple. I'd seen it in Paris, in the proudly

martyred way an older American woman I knew talked of her

fibromyalgia--another " dysautonomia syndrome "

characterized by fatigue and muscle pain--and found, most

commonly, according to her and her doctor, in " American

women who move to France. " I recognized it from the tone of a

letter from an old friend whose life had been hijacked by her

quest to control her multiple " food sensitivities " : " Nuts and

(Continued on page 196) seeds make my lips swell and blister.

Egg, soy, grains, chicken send my insides into wild, agonizing,

screaming rejection. " I'd seen it in the fervor with which another

friend tried to convince me I was lactose-intolerant. ( " You see! "

she'd erupted as I sneezed over a bagel with cream cheese.)

This same friend, driven by the pains of lactose intolerance,

hypoglycemia, chronic fatigue syndrome (also a form of

dysautonomia), adrenal insufficiency, and the allergy to urban

life alternately called multiple chemical sensitivity and

twentieth-century disease, had persuaded her husband to

uproot his entire life to decamp to an environmentally pure

retreat in the mountains--at which point he became allergic to

their countryside home. This was not the realm of medicine but

yet another example of what Princeton scholar Elaine

Showalter has called the " new and mutating forms of hysteria "

rife in American society--an effort to find " external sources " for

internal woes.

I myself had been down this road before , and I did not want to

go there again. Let me explain: As a young adult, I spent a

number of years in therapy with a panoply of symptoms; mostly,

I was obsessed with my love/hate relationship with my father.

My therapist suggested I read E. Sue Blume's Secret

Survivors, a then-much-discussed book for incest survivors,

which begins with a checklist of symptoms that indicate

repressed childhood sexual abuse. Among the characteristics

with which I identified were " poor body image " and

" gastrointestinal problems, " " headaches " and " baggy clothes, "

" high appreciation of small favors by others " and " feeling

demand to 'produce and be loved.' " Thus began a year of

trying to recover memories. In deep relaxation, I saw pastel

colors, then worked hard to recall sinister events linked to a

childhood quilt. I probed my dreams. My stomach ached a

great deal, as it had throughout my childhood, and my

irritable-bowel-syndrome diagnosis was born.

In Hystories: Hysterical Epidemics and Modern Media ,

Showalter writes that many girls who in the 1980s and '90s

became part of the " epidemic " of bulimia and anorexia learned

to throw up after hearing Jane Fonda's description of it in the

early '80s. (I know I did.) Likewise, after I was diagnosed with

repressed childhood sexual abuse, I began, for the first time in

my life, to have panic attacks in public bathrooms. I had

dreams tinged with bizarre sexual imagery and " flashbacks " to

once beloved but now fearsome childhood places.

I began to embrace my identity as a " survivor " and to " speak

out " to my friends about my quest to recall the sexual abuse I

thought might have occurred, but the memories failed to

materialize. A couple of years passed, and by 1994, with

false-memory lawsuits peaking, I quit therapy, my final

diagnosis having been downgraded from a high point of

borderline personality disorder/post-traumatic stress

disorder/adjustment disorder/depression to dysthymic

disorder, which means, simply, being kind of depressed and

anxious all the time. And which might, less diplomatically, be

called generalized crummy personality disorder.

And that was that. With my generally crummy personality largely

intact, I left therapy, left the country, and moved on. But for a

while at least, and without the slightest shred of evidence, the

diagnosis stuck. The truth is: I made it stick. I derived

enormous comfort from being a victim of childhood sexual

abuse. It gave meaning to my otherwise inchoate symptoms of

psychic--and sometimes physical--distress. It gave form to

my life story; indeed, it created a story. And this was very

important. I remember learning in a college film theory class

that " closure " is the key to " narrative pleasure. " In other words,

we need epiphanies that make all the prior elements of a story

slip into place. This is true in life as well as in film. Finding a

way to tell the story of your life so that it feels right or true (or

" pleasurable, " as we would have said in film class) feels like

mental health. Whether it is true is almost irrelevant.

In my case, being " diagnosed " as a victim of sexual abuse was

a way to bypass the complexity of the love and hate that bound

me to my father, a task I would complete only years later, when

he died. Although the abuse narrative lent a horror-movie cast

to my life, I was in good and plentiful company then--sharing

dream imagery with Lynch and a life tale with an endless

parade of talk-show guests. So it was, ten years ago, for

recovered memory syndrome. So it remains today, I believe,

for mitral valve prolapse syndrome and the other

" dysautonomic disorders. " They give sense and meaning to

life. They bestow identity. They also, I believe, are a cop-out--a

way to assuage anxiety without having to address it.

I understand the temptation. Life is inherently

anxiety-provoking, often uncontrollable. If my lips are swelling,

my migraines exploding, my body covered in hives after I return

to America, what can I do? Move back to France? Transform

the American political system to create universal preschool at

age three? Reverse an economic downswing? Correct career

errors I made years earlier that left me with limited options and

diminished self-esteem? I can't do any of this. At best, I can

take Paxil and live with it. Or not take Paxil and live with it. But if

I decide that my problems are due to MVP syndrome, then I

can nurse my various ills, " control " my condition, and, probably,

feel much, much better. It is the un-PC truth: Many, many

people--women, mostly--take this path to cope with the

unruliness of existence. It's a sure way to guarantee that we

never do anything about that which unhinges us in the first

place. It is a refusal of empowerment that is, unfortunately,

ubiquitous in our " post-feminist " generation.

Donna E. , MD, a Canadian psychiatrist who

specializes in somatization, encountered this phenomenon

when she studied fifty patients who suffered from the usual

array of headaches, stomachaches, irritability, and malaise

attributed to environmental hypersensitivity disorder, food

allergies, chronic fatigue, and yeast hypersensitivity. None of

her subjects were actively employed. Less than 40 percent

expected to recover their health. They had become permanent

invalids. " Somatizing patients, " concluded, " often feel

angry and blamed if they receive a psychiatric diagnosis.

Physical diagnoses, however, are perceived to be beyond their

control, and they become a legitimate reason for giving up

other responsibilities . . . or for allowing themselves to be

looked after by others. The secondary gains are often obvious

and significant. "

Having a problem that's " all in your head " has gotten a bad rap.

We forget that when Freud started treating hysterics, his effort

to pin down the psychological origins of his patients' physical

trials was not an attempt to dismiss or belittle them. At the

beginning, at least, Freud listened to his patients' stories and

tried to understand how events in their lives had made them ill.

This was certainly a step up from the way hysteria had been

understood in the past--as a by-product of being female,

essentially. Today, I happen to believe that it gives greater

dignity to a woman who presents with psychosomatic

symptoms to acknowledge (once other medical conditions

have been ruled out) that her life is stressful than to indulge in

the shared doctor-patient fantasy that something is " really "

wrong.

Yet allowing the psychological basis of a symptom is also a

challenge, because it's an implicit admission that you can or

should change your situation. A French doctor made this

suggestion to me years ago, when I came in with recurrent

headaches (they're less " sensitive " to the niceties of the

doctor-patient relationship there): " If you keep banging your

head against the wall, you're still going to have headaches. "

There are times in life when you can't--or won't--stop banging

your head against the wall. And at those times it is more

comforting to think that you suffer from a syndrome than to

admit your own shortcomings and inability to change.

© 2002 LH.net, LLC

The etiology and clinical course of Chronic Fatigue Syndrome (CFS) remain

unknown. As the search for more effective treatment and, hopefully, a cure

continues, future researchers may be drawn toward a holistic approach to

CFS, specifically as an interaction among the neural, endocrine, and immune

systems.

Read this article by Craig, D.O. and Sujani Kakumanu of

Pennsylvania State University College of Medicine, Hershey, Pennsylvania at

http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3723

[AOL: <a

href= " http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3723 " >Read

it here</a>]

Send an Email for free membership

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>>>> Help ME Circle <<<<

18 July 2002

Editorship : j.van.roijen@...

Outgoing mail scanned by Norton AV

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In response to:

" The Thin, Successful Woman's Disease "

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

By Gurli Bagnall

Judith Warner's article, " The Thin, Successful Women's

Disease " highlights what is wrong with the umbrella title,

Chronic Fatigue Syndrome (CFS). It is clear that Ms. Warner,

while plagued with a number of symptoms, does not suffer

Myalgic Encephalomyelitis (ME), Multiple Chemical

Sensitivities (MCS) or Fibromyalgia (FM). These are

conditions that have been lumped together by a few members

of the medical profession who should have known better, with a

number of unrelated disorders such as hers.

In writing her psychological profile of others, Ms. Warner

revealed several aspects of her own mental state. Her history

and ready acceptance of the psychiatric model; " my generally

crummy personality " ; and childhood sexual abuse (which she

cannot recall but from which she derived " enormous comfort "

for a time), speak of a person who is easily influenced and

manipulated by authority, who knows little of medical history,

and who has a low self-esteem. This does not describe the

average ME, MCS or FM sufferer.

If this seems insensitive, I make no apology, for Ms. Warner

herself, pulled no punches when making her demeaning

judgements on all people who suffer unexplained conditions.

The psychiatric argument she adopts is based on the fact that

the organic causes of diseases such as ME, MCS, FM and

Gulf War Syndorme (GWS), are not yet known. The assumption

that they must therefore be disorders of the mind, is just that -

assumption, opinion and bias. If Ms. Warner sees this as

scientific proof of her stance, then her education is sadly

lacking. She clearly is not aware that asthma, tetanus, epilepsy,

Parkinson's disease, MS etc. etc. etc. were once deemed to

be hysteria.

While her answer seems to lie currently with psychotropic

medication, she is apparently unaware that both anxiolytics and

antidepressants have adverse effects which include a number

of life threatening physical conditions as well as addiction,

anxiety, depression, insomnia and suicidal thoughts.

In most instances, the efficacy of anxiolytics ceases after 2 to 4

weeks, and indeed, the recommendation is that they be

prescribed for no more than that period for fear of addiction. A

recently published paper on the outcome of a study of

antidepressants, showed that " 80% of the response to

medication was duplicated in placebo control groups…..[and]

Improvement at the highest doses of medication was no

different from improvement at the lowest doses. " (Prevention &

Treatment, Volume 5, Article 23, 15 July, 2002)

Ms. Warner quotes Donna E. , a Canadian psychiatrist,

who refers to " somatizing patients " . Dr. is of the

opinion that this gives patients " a legitimate reason for giving

up other responsibilities…..or for allowing themselves to be

looked after by others. The secondary gains are often obvious

and significant, " she said. This may describe Ms. Warner who

is perhaps fortunate enough not to have to rely on the

sometimes dubious benevolence of state charity to put food on

the table. It does not, however, describe those who genuinely

suffer ME, MCS or FM and whose lives are filled with

frustration at the limitations the diseases place upon them.

In response to Dr. , I offer the following quote: " I've

never been able to determine how secondary gains that

include financial hardship, social isolation, and reduced quality

of life can perpetuate illness behavior. " ( McSherry MB,

CHB) To suggest that living like this is a significant secondary

gain, is clearly ridiculous.

Finally, and because they are inseparable, Ms. Warner might

like to consider the following alongside her simplification of a

complex problem.

Based on KNOWN figures, the WHO estimates that a third of

disease is caused by medical error. (Confirmed in the British

Medical Journal 320: 774-777; 18 March 2000.)

The third biggest killer after heart disease and cancer, is

medical error. (Journal of the American Medical Association

Vol. 264, No.4, 26 July, 2000.)

The psychiatric branch of medicine can take credit for most of

this, so why would any intelligent person accept the explanation

that the pain in their left big toe is really in their right thumb, and

psychosomatic at that?

© Gurli Bagnall

18 July, 2002

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