The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.
I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.
I was at
the recent FDA meeting. Whether it is this meeting or any other government
meetings, no mention is ever made of severely ill ME/CFS patients. No depiction
of the real severity of the illness is recorded or given. There seems to be a
constitutional allergy to depicting "the core of this illness".
true of government bureaucrats as well as patients, advocates, physicians, and
clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and
heartfelt testimonies at government grieving altars. Regardless of the
sacrifice on the part of patients, this information does not seem to impress
anyone. Nothing happens. This is a
It is a
structural problem – not embracing the deep seriousness of the illness. No one wants
to go there.
ME is a
dangerous, debilitating, life-destroying illness of a frightening dimension.
The government’s half-baked response to this illness shows great disregard - and manifests
incredible cruelty towards patients with this serious illness.
at the center of this illness - those in darkened rooms - are
depicted and embraced and understood, nothing will happen at the government level.
In order to
set the tone, videos of severely ill patients should be presented at the
beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get
the participants in the right frame of mind.
clear evidence that the government has no interest in this. Multiple times they
have been given the opportunity to present visual evidence of the severity of the illness, and
they have said – no. The government is
content to give a grieving altar to the moderately ill and leave it at that.
The very, very ill have big problems. Everything around them represents a threat to their
health. They need to be protected at every level – protected from doctors, from
realtors, from neighbors, from movement, from noise and vibration, from friends,
from family, from hospitals, from water, air, chemicals, mold – from everything. Dr. David Bell & ME/CFS patient from ME/CFS patients on Vimeo.
recently wrote about her May 2012 move from one apartment to another. She
writes her blog posts excruciatingly slowly - mostly from memory, using a voice
recorder, and typing on a keyboard without using her eyes. Among other things, my daughter suffers from photophobia and hyperacusis.
apartment move was the first time my daughter had been out of the house since
April 2010. She has been out of the house twice in seven years.
2010, in a similar coordinated operation, we took her to a neuro-ophthalmologist. I was concerned about her eyes. (I still am.) My eldest son flew in from Baltimore and, along with a MN friend, we drove my
daughter the 12 minutes to the doctor's office. My daughter lay in the back seat
of a Chevy sedan. As I was helping my daughter out of the car she said that she
felt “like she had been beat up”. (I
learned something there.) We rolled her into the office on a wheel chair. The
office staff was compliant. They lowered the shades and turned off the lights. The
neuro-ophthalmologist did the first half of an eye exam and found nothing
remarkable. When the doctor left the
very small office for a few minutes, my daughter got out of the examination
chair and lay on the floor on a mat that we had brought with us. This seemed
to disarm the doctor. A few minutes later we were back in the car, heading home.
Once back in her apartment, my daughter recovered slowly - taking nine weeks to
reach baseline. Moving an ME/CFS patient is a precarious business.
trip was difficult, and costly in terms of recovery, my feeling was
that at least we had gained one doctor in MN. This turned out to be a delusion - as
this physician proved unwilling to deal with my daughter through an advocate. Pleas
to do so from another more compliant physician fell on deaf ears.
have learned from an ME/CFS friend a little more about moving severe ME patients.
Here is my friend’s explanation:
“A car trip with CFIDS can be
exhausting and unsafe, yet necessary to get to medical appointments. Lying
across the back seat with no seat belts is highly uncomfortable and unsafe and
the average backseat is rarely flat and small cars aren’t wide enough for a
horizontal adult. Although a front passenger seat can be tilted back, it does
not go completely horizontal and often is uncomfortable as well and the
seatbelt can actually be dangerous to use with the passenger seat tilted
After many months of research I
decided to put an ambulance cot with seat belts in my van. I worked with an
ambulance outfitter and we removed one of the back seats in my
Honda Odyssey and then bolted the ambulance cot through the floor.
This van-with-cot and harness seat-belt innovation has greatly improved my
ability to get to medical appointments even if they are far away and even,
though rarer, to occasionally make a nonmedical trip. It has made car travel
possible in two very different, but equally critical ways:
1) It allows for long trips in both
comfort and safety and one can also switch to the front passenger seat to be
upright for a while.
2) It also allows a CFS patient who
can drive a few miles to have the ability to rest at any point during the trip
as you can pull over and get in back and rest as long as needed before
continuing the trip or errand.
I was able to sell my old car for the same price I bought
a 1996 second hand Honda Odyssey and I was lucky to get a free ambulance cot
that had been removed in an upgrade. My only cost was the $200 installation.
The cot is outfitted with pillows and a lightweight blanket and sleeping
bag. A stick-on-protection film on the window reduces the sunlight. The
original ambulance mattress was pretty hard so it's helpful to add a medium
density latex 2” topper which can be cut to size.”
now lead us to contemplate moving my daughter from Minnesota to Philadelphia.
This is a much more complicated process and there is very little information to
guide us, to help us to make decisions. One has to be extremely careful with a
severely ill ME patient. Movement, sounds, smells, sights, vibration, touch can
all be destructive for the patient – and not just in an incidental manner. I
will write more about this later.
God bless you and your daughter. I would ordinarily strongly object to being labeled "half-sick," since I have been disabled by ME/CFS for over 20 years. But in the context of what you are dealing with, the distinction seems appropriate. I "pay" for trips to the doctor or other outings with a day or two of relapse -- not nine weeks. I agree that if politicians and others are seeing only folks like me as the face of ME/CFS, they are seriously missing the big picture. Showing videos of patients like your daughter is a great idea -- if only they would do it! Words seem inadequate here, but I do pray for emotional strength for you and your daughter and for health care professionals to meet her true needs.ReplyDelete
Thank you for writing about the plight of severely affected M.E. patients. I have been sick for nearly three decades, and my illness has now progressed to such severity that I am unable to leave my home. Even my physician and lab technicians come to my home.ReplyDelete
I believe you are correct: "Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level."
It is very difficult for those of us who are so devastatingly ill to come forward; and when we do, we are treated with disdain by many of the less seriously affected patients who are able to fly to meetings and testify, etc.
We are real, we are in pain, and we need real help.
Anyone who is interested in the truth should read STONEBIRD, the Experience of Severe ME http://www.stonebird.co.uk/
Thank you for speaking up on behalf of your daughter. Many severely affected ME patients are too ill to speak for themselves and have no one else to speak for them. You are a blessing to these patients.
I agree that there "seems to be a constitutional allergy to depicting 'the core of this illness.'"ReplyDelete
Recently I complained on a blog owned by a well-known CFS "activist" that bedbound and housebound patients are excluded by study design from almost all research.
The blog owner replied that this is a good thing. He wrote, "I've long been wary of the need to include bedbound patients in studies…The optimum patient in an [sic] research study might just be someone who can get around enough to avoid the effects of deconditioning but who’s still very limited otherwise…"
I have had ME/CFS for 27 years. As fate would have it, I'm not as debilitated as your daughter but I also can't travel, even by subway to another borough in my city nor to visit scenic New Jersey on a car trip.ReplyDelete
This is something not understood by friends.
I don't know how you can move your daughter to Philadelphia. It sounds like you mean move her apartment. It means other people have to do all of the packing and moving and unpacking and setting up everything. For her, it means traveling in that well-equipped van with food, water and rest stops. It means some protection from the sun and noise, sunglasses perhaps, ear plugs. Since summer is upon us, it also means cool hair so she doesn't have to deal with extreme heat. Philadelphia gets hot!
Best wishes on the move.