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.