Wednesday, June 18, 2008

Nancy Kaiser, R.I.P. -- Patient 00

From Nancy Kaiser's daughter (may be reposted):

The passing of pioneer advocate Nancy Kaiser

It is with great sadness for our family and  friends to have lost my mom, Nancy,
to end stages of CFIDS [on] June 14,  2008.  The last 6 months my mom has
declined in health. I was blessed  to have moved her close to me and we spent a
lot of quality time together. Her illness drastically changed in the last two weeks
as she was put in Hospice care.  What ever the neurological event was the finally
took her is unknown at this point, but we will be finding out the cause of death.

To all her  friends in the CFIDS community, long term friends from growing up
in Olean and  to those who were here in Albuquerque, you all were such an
important part  of her world. Being so disabled, her computer and phone
conversations were  her lifeline. To our family who live all over the country, it was
family  bonds that she treasured most.  She would have done any thing for anyone
if  capable.  She will be missed by so many.  The part you need to know is 
that she was at without pain in a coma for several days.  As I stood and 
looked at her, I saw peace for the first time in 30 some years.  This is  difficult
for my dad as his health is declining as well.

I know my mom is in  heaven looking down on all of us right now.  I hope you
know the impact you  made on her life as she shared so many stories with me.
My mom was a  fighter until the end.  She always hoped that her long journey
with CFIDS  would help someone else.  That was her goal.  I pray you are all
able  to take away many good memories of Nancy, known as patient "00".  My 
brother Jim is here to help with lots of things we need to take care of. My mom's
wishes were cremation and no public service. No flowers please, but if you
wish to honor my mother, please make contributions in her  name to:
The National CFIDS  Foundation,
103 Aletha Rd,  Needham, MA 02492-3931.

* * *

It's often been said that AIDS was not taken seriously until patients began to die of it and they could no longer write it off as depression or psychosomatic.  Well, our first-generation patients are starting to die of CFS and its complications.  Maybe now we can get the world's attention as autopsies show physiological abnormalities that can only be explained by CFS.

Secret Shoppers for Doctors' Offices

According to an Associated Press article, undercover patients are now testing doctors.  Indianapolis-based Perception Strategies provides undercover patients in 25 states.
Dr. James Loden, an ophthalmologist, has had undercover patients evaluate him.  "Employees, including doctors, are paid to do specific tasks; if they choose to perform at a level that is less than acceptable, they need to improve or find other jobs."
This is good news for CFS patients.  Doctors who don't listen, or who substitute their assumptions for what the patient actually said, will be called to account by their supervisors when the secret-shopper reports come in. 
Meanwhile, there are things you can do yourself: request to see your file so you can find out before it's too late whether a doctor has made disparaging comments about you or your CFS diagnosis; if you feel your doctor doesn't listen to you, report to Administration of the medical group or medical center that he's not performing acceptably; if a serious error has been made, report it to the State Medical Board, with a copy of that report to the doctor and his supervisors.  You may even want to suggest to Admin that they have a secret shopper come in and test a bad doctor.  Or sign yourself up to work as a secret shopper to earn a little extra spending money.
Too many doctors perform unacceptably where CFS is concerned.  They don't understand it, but refuse to refer you to a specialist.  Or they mistakenly believe that it's just another name for depression and that the only treatment is anti-depressants.  Anti-depressants are useless against CFS, and there are plenty of medical journal articles available online that you can print out and show to your doctor if he persists in prescribing an endless variety of anti-depressants in hopes of finding one that will help you. 
The only things which have been proven to work on True CFS are anti-viral medications; however, since Ampligen is only available to patients who were previously enrolled in a clinical trial, and the one Dr. Montoya is testing runs over $1000 a month for a minimum of 6 months, you may want to first try sleeping pills.  They will not cure the virus, but they may improve your immune function to the point that your immune system can get the upper hand over the virus, and you'll feel better.  However, a doctor who doesn't listen to you will never understand that what you have is a virus and not depression.

Intracellular Signalling and Chronic Pain

Stress induces a switch of intracellular signaling in sensory neurons
in a model of generalized pain.

J Neurosci. 2008 May 28;28(22):5721-30.

Khasar SG, Burkham J, Dina OA, Brown AS, Bogen O, Alessandri-Haber N,
Green PG, Reichling DB, Levine JD.

Department of Oral and Maxillofacial Surgery, University of
California, San Francisco, California 94143-0440, USA.

PMID: 18509033

Stress dramatically exacerbates pain in diseases such as fibromyalgia
and rheumatoid arthritis, but the underlying mechanisms are unknown.
We tested the hypothesis that stress causes generalized hyperalgesia
by enhancing pronociceptive effects of immune mediators.

Rats exposed to nonhabituating sound stress exhibited no change in
mechanical nociceptive threshold, but showed a marked increase in
hyperalgesia evoked by local injections of prostaglandin E(2) or
epinephrine. This enhancement, which developed more than a week after
exposure to stress, required concerted action of glucocorticoids and
catecholamines at receptors located in the periphery on sensory afferents.

The altered response to pronociceptive mediators involved a switch in
coupling of their receptors from predominantly stimulatory to
inhibitory G-proteins (G(s) to G(i)), and for prostaglandin E(2),
emergence of novel dependence on protein kinase C epsilon.

Thus, an important mechanism in generalized pain syndromes may be
stress-induced coactivation of the hypothalamo-pituitary-adrenal and
sympathoadrenal axes, causing a long-lasting alteration in
intracellular signaling pathways, enabling normally innocuous levels
of immune mediators to produce chronic hyperalgesia.

Ways to handle Brain Fog

This week's feature article at the CFIDS & Fibromyalgia Self-Help website is
"Lifting the Fog." The article, which describes 15 ways to treat cognitive
problems (brain fog), is the last in a series on treatment options for CFS and
FM. Other articles focus on fatigue, pain and sleep.

The site contains more than 150 articles on topics such as coping strategies,
pacing and support. In addition, there are many patient success stories and
information for family and friends.

Founded in 1998 as a 501(c)(3) non-profit organization, we have conducted more
than 200 self-help courses. Our classes are offered over the internet.

Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program  

Another CFS Story

Early this morning, I heard another classic CFS story that should make us all furious.
A friend of a friend is hospitalized after collapsing at work.  She hasn't felt well for months, but the family insists that she's just too lazy to continue working three jobs.  When the doctors said they hadn't yet found a cause for the collapse, the family tried to insist that she walk out of the hospital and get back to work, because there's obviously nothing wrong with her.  Fortunately, she's too exhausted to walk, or someone would have dragged her out of the hospital against doctor's orders.
The primary reason CFS patients are admitted to the hospital is "inability to care for self".  Like this woman, their body gives them warning signals for months and they don't slow down until they reach a point of complete collapse.  For some of us Type A's, the motivation is internal, for others it's family members or employers pushing them to do more until their body gives out.
The good news is, now that she's been admitted to the hospital, it's more likely that she'll be able to get SSDI benefits quickly.  The bad news is, I know people who pushed to the point of collapse, wound up in the hospital, got their benefits right off, but the after-effect of having pushed themselves to the point of hospitalization has lasted more than a year of even worse health.  For those of us who are just barely managing in the first place, pushing to the point of hospitalization might mean the last night we ever spend in our own home.  I don't want to live in a nursing home for a couple of decades, but pushing myself to get hospitalized to get my benefits more than likely would have that result; getting my SSDI benefits simply isn't worth the trade-off of being permanently unable to do even the small amount I'm able to do now.
Fortunately, this woman has a friend-of-a-friend who knows a lot about CFS.  I recommended my friend print out the lists of tests recommended for CFS (referenced elsewhere in this blog) and see if they can get the doctors to do at least some of them.  Perhaps the abnormal test results will convince her family that she's really sick, not lazy, so that they stop pushing her to continue pushing to the limit until they kill her.