It is that time of year again.
Holiday time and the New Year is the saddest season for ME/CFS patients. While
the dance of life goes on for many people, ME/CFS patients feel the heightened
sense of abandonment and despair.
We need to try to do more to
relieve their suffering.
I have felt for a long time that
the key to the illness – should there be a key – lies with the severely ill.
These patients at ground zero of this illness need to be studied - and studied
in depth.
This is more possible today than
any time prior. There are commercially available tests that could uniformly be
applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would
delve even deeper.
Please excuse the repetition as I
quote a few items from my previous blog posts.
As Stravinsky said, some things need repeating.
“It is my belief that we,
collectively, have to look more closely at the most severely ill ME patients.
It is my belief that they harbor, in their severity, the keys to this illness.
Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips
into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have
occasionally seen the severely ill. Perhaps others have - and hats off to them.
But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get
to a doctor's office. They languish in darkened rooms, cut off from reality,
isolated and often abandoned, and without medical care. It appears that no one
cares a whit about them. It is these patients on whom we have to focus our
attention - both for their sake and for ours. More effort has to be made to
"get in close," although this, in itself, is difficult under even
the best of circumstances.
I know of a number of these
patients. They have the willingness to participate, through testing, in
their own potential betterment - provided that the severity of their situation is taken
into consideration. Many already have had testing for immune function, NK cell activity,
cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent
testing needs to be applied to these patients using existing parameters - if
only to set the stage for future possibilities that will soon arise.
Most people do not want to take a
look in this direction. Most people turn away - including doctors. It is time
to toughen up - and to consider these patients, and what they are going
through. Testing of the moderately ill has not brought clarity.
We need to brace up, take a good look and then move in close. While it is
difficult it is the only decent and humane thing to do.”
“Until those at the center of this
illness - those in darkened rooms - are depicted, 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.
There is 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 roofers, from plumbers,
from realtors, from neighbors, from movement, from noise and vibration, from
friends, from family, from hospitals, from water, air, chemicals, mold – from
everything.”
“And what about the others - what
about the really sick ones?
There is really only one way to
present this illness, and it needs to be done more often. The face of this
illness lies in the presentation of the severely ill patients. This is one of
the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to
make this video, visually and audibly describing her condition. This courageous
and heartrending video that has so much power and dignity. We need to see more
of these kinds of videos - images and pictures of the severely disabled. This
is where the visual information lies - down near the bottom.
"Walled up:
Imagine a patient who cannot stand,
who has extreme fatigue and must live a horizontal life. Imagine a person who
is functionally blind from light sensitivity and eye muscle fatigue and wears a
blinder 24/7. Imagine how this blindness might further limit this person's
ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin
is sore and sensitive to the touch. Imagine a person who cannot focus their
thoughts, has short term memory deficit, or can't speak clearly because of
neurological deficits ("brain fog"). Imagine a person who has seizures,
spasms and twitches. Imagine a person who has lost their sense of smell - or
has hypersensitivity to smells. Imagine a person who cannot speak, or cannot
speak above a whisper. Imagine a person with a feeding tube, IV medication, and
oxygen. Imagine living in a world where things coming in and things going out
don't happen. Take a good look. This is ME/CFS at the core. My friends in the
UK call it ME. It is worth noting that all ME/CFS patients are on a continuum,
shifting whimsically up or down the scale over the years.”
Incidentally these severe patients
have measurable abnormalities that characterize the illness.
I have written about the film
Voices from the Shadows here. Allow me to quote one part of this
“And yet the
film does focus on "those who do not back away" - the caregivers.
These caregivers are trying valiantly to save their loved ones, but the stress
is in their eyes, in their movements. It is a very difficult position to be in,
to chose to move in close and
support the very ill patient. Moments of interchange between the caregiver and
patient are excruciatingly poignant and painful. This illness is terrible for
the patients. It robs them of much of life's normal activities and interaction,
and yet the caregiver, in his or her giving, suffers terribly also - and this
film delivers that message. A properly balanced interaction between caregiver
and patient - something that is extremely difficult to get right - is depicted
with extraordinary sensitivity by these filmmakers.’
"Natalie Boulton has also done us a
great favor in writing and editing her fine book, Lost Voices, a
gathering or set of stories and pictures of severely ill UK ME patients. The
book was published by InvestinME in 2008. It gives the clearest picture currently available of
this illness, and is the most valuable resource for coming to terms with its
reality. Otherwise there are various videos on youtube made by patients, and by
the providers of these very sick patients. Many of the older videos that I viewed
years ago - ones that were quite frightening to me - have disappeared off the
internet. Soon we will have additional contributions in this area, and they
will be welcomed for what they are - clear documents of the core of this ME/CFS
illness.
This, of course, is not an easy
subject. It is a delicate issue - this severe private illness that takes place
in darkened rooms - and from many points of view. But I think we have to have
the courage to put pictures and videos - with clear explanations - out into the
world in order to show the serious consequences of this illness. This illness
needs a face, a real face.
I was in the conference hall in
London several years back when Dr. Kenny de Meirleir showed videos of
desperately ill, bed bound patients in Norway. The video was extreme, showing a
patient lying in a bed in a darkened room, with a feeding tube, wearing a
blinder and ear protectors. The sheets were suspended above the patient due to
intolerance of the weight and pain of the sheets. It was a riveting, terrifying
video, an image straight out of Dante. At the same time, Dr. de Meirleir had a
young woman speak about her "walled up" sister, who she had not seen
in four years - even though they lived in the same house. It was easy to sense
that this presentation shocked the audience, an audience consisting of patients
or those familiar with the illness. It was as if Dr. de Meirleir had done
something inappropriate. But for me, it was a revelation, and that moment has
percolated in my mind ever since.
How can this illness be presented
to the uninformed - doctors, researchers, journalists, friends and families -
in a profound way? I think you have to go "to the core". It is like
going inside of the smashed nuclear reactor and viewing the exposed fuel rods.
Certainly, at the moment, the face
of this illness has not registered with the public at large, and listing a long
list of symptoms is not going to cut it. I want a video in my hand that depicts
the "very bottom" - a video that I can hand to Dr. Harvey Alter and
say : "Dr. Alter, take a look at this." - and hand it to any number
of people with the same intention. There is a need to provoke people into the
recognition of the true devastation that this illness inflicts on patients -
and caregivers.”
Such were some of my comments from
the past. If I ever had a conspicuous idea about this illness it is to study
the severity of it. Hopefully things are about to change in this regard and I
will write more about this soon.
In the meantime, I have five or six
ME/CFS friends who have made substantial improvement in the last few years.
Most had the illness at a moderate to serious level and were disabled in one
way or another, suffering serious consequences to their lives. Each of them
pursued various avenues to betterment and there was no commonality to what
brought them to some betterment - and a couple to substantial betterment. No commonality, and yet they have the same
illness. Their diverse treatments included antibiotics, acupuncture, Valtrex,
methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis.
Each had to find their own path through trial and error. This is an important bit of information.
Yesterday I read this article,
which I found of interest.
