Tuesday, March 22, 2011
"What the boys want, dad, is clarity"
One of the positive phenomena of the last few years is the number of clear and strong voices that have emerged in the ME/CFS community. It seems to be ever increasing - whether by blog, comments, articles, or message boards. Each of us has a part to play in this unfolding drama - and it is a healthy sign that this great stirring has happened. (Check out the responses to Amy Marcus's articles.) I attribute this increased "activity" solely to the October 2009 paper from Vincent Lombardi and Judy Mikovits of the Whittemore Peterson Institute. This paper has sharpened and strengthened the voices of the patients with this illness.
These voices strive to bring clarity to a decades-long deliberately scrambled ME/CFS mess. This is going to take a lot of work, to untangle this mess, but I think it is possible if we keep at it collectively.
When I am in Philadelphia, I will meet friends at a local coffee bar. These friends are often ME/CFS patients. We will sit around a table for an hour and have a lively conversation. Occasionally, among those with ME/CFS, there is a moment of cognitive shortcoming, where an individual has difficulty grasping for a word or an idea. While this is usual for someone my age, these people - men and women - are younger, and this abnormal "brain fog" goes with the territory. Otherwise these wonderful friends seem "normal" - lively, engaged and engaging. In this group, the morose introverted artist (me) is the one that looks sick.
I will get up from the table and head out on my bike, doing my errands, The others in the group, those with ME/CFS, will go home and lie down for two days. "Going out", doing anything, takes a big toll on these patients. They also do "preemptive" resting in preparation for a modest social occasion. It is worth pointing out that these are the "well patients". These are the patients that doctors see in their offices, when the patients make their best "presentations". These are the patients who can go to "part of a conference" and then spend a week or two in bed. The face of ME/CFS doesn not reveal itself in public very clearly - and this is a large part of the problem of communicating the true nature of this illness. People at large see these patients - and they "look pretty good". Looks are deceiving.
What can we do about this? If the public face of the very serious illness does not reveal itself (think AIDS , think Parkinson's), how does one present this illness? (It is not sufficient to show a person lying on a couch or dropping dishes.)
And what about the others - what about the really sick ones?
There is really one 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.
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 have to wear earplugs or sound blocking earguards. 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 other ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.
Incidentally these patients have measurable abnormalities that characterize the illness.
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, 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 women 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.
My daughter suggests "before and after" video stories. This also could be adapted to written stories. These stories would have to be done on the right patients, ones who can be well documented in a manner that the public will understand. Stories in this arena would most likely lean towards doctors, nurses, lawyers and other professionals whose lives have been shattered. It is my judgment that their stories would be easier to tell and more understandable in the society in which we live. This should not be seen as a value judgment, and I am open to suggestion here.
Confirmation of the power of this "before and after" treatment was driven home to me this past week by satellite pitchers of the vast destruction in Japan. These photos are very powerful and convey in an instant what needs to be applied to this very serious, debilitating illness of ME/CFS.