Friday, February 25, 2011
"Lost Voices" (from a hidden illness)
Last week the Patient Advocate officially joined the ranks of the X people - XMRV+ via serology.
I have a very fine urologist and I am this doctor's very first XMRV+ patient. I could hear the nurse's in the hall reading my chart, saying, "What's XMRV+?" This urologist, who will remain unnamed, is one of the most humane doctors that I have ever met. (I wish that this doc was my regular physician.) Last year I told this urologist about XMRV. At the time the doctor had a limited idea about this retrovirus. This year I took recently published XMRV/prostate studies and placed them in the doctor's hands. The doctor will read them. (At the moment progress in "XMRV" is made one person at a time.)
Each year I give this doctor a compressed version of my daughter's condition (The doctor has daughters too.). This doctor, who is deeply empathetic, listens and says, "I don't know how you can do what you are doing". In regards to viruses and illness he says, "Viruses are frightening". In reaction to my explanation about the current battles over research into XMRV and CFS, the doctor says, "We live in a world of self-interest and greed". The doctor makes sure to shake my hand on leaving. It is not surprising that I like this doctor. This doctor is one in a million.
Recently, out in the external world of ME/CFS, the old playbook from 1991-92 has been dug out from the back of the closet. It is not difficult to see what is going on. Big efforts are being made to shove CFS research back to 2005 and before - and to end serious research into viral or retroviral association with ME/CFS. There is a sea swell of garbage/argumentation, much of it illogical and nonsensical - and particularly aimed, directly or indirectly, at the WPI, who are seen as "independent". Working at Stanford, Dr. Montoya is more "insulated" and is going to be a little harder to get at - but attempts will certainly be made to knock him out too. With this in mind, Dr. Montoya keeps a pretty low profile.
Every tactic in the book is being used - on a revolving basis - to unseat "XMRV".
The big question is this: Has "XMRV" research reached "the tipping point" - where it has a momentum on its own? ("XMRV" is a term representing the dynamic effort to promote serious scientific investigation into viruses, retroviruses, immune dysregulation, immune profiles, and the mechanics of this illness.) There are two ways of looking at this. One is that since October 2009, XMRV has been stalled out, under fierce challenges, without reaching any resolution. The other is that XMRV, over that time period, under fierce challenges, has not been knocked out of the box. Ladies and gentlemen, place your bets!
One thing is certain. Dynamic research into ME/CFS is going to have to go ahead on its own. Means are going to have to be developed to privately finance research. (This is not the only disease with this problem.) No one is going to come to the rescue. The illusion that the government is going to help has been rolled up in a little ball and thrown in the cheap tin trash basket. Concerted, driven, focused research is the only way out of this illness. There is no other way - and now is the time to take advantage of the positive momentum. If the shitheads get the upper hand again, it will be another 5o years until another opportunity arises.
A few important researchers are sitting on the fence about the viral or retroviral association with this illness. Recently, in public, two researchers - Coffin, Alter - have expressed the need to find the center of this illness - XMRV or not. It has been suggested that these researchers have contact with a few patients - and have learned a bit about the specifics of this illness. But what do they really know? They know nothing. They certainly have no idea of the devastation that this illness can inflict on the human soul - and I am afraid that they are "beyond knowing". This ME/CFS disease needs empathy - but does it exist today ? (outside of my urologist and a few others like him)
Most people, doctors for instance, do not want to look at this illness in its particulars. They get bored and irritated with the endless list of symptoms, and the rotating, unhinged,"unable to be pinned down" nature of this illness. The face that is presents is too complex and too shifting for their tastes, and thus it invites disbelief - with the attendant cruelty unleashed towards the patients. This has a medieval feel to it.
Can one get beyond the disbelief factor with this illness? Is there a way to give a clear picture of the illness at its center, and of the patients at the bottom?
This is a very strange disease. Over the years, I have sought to find an image (for myself) that taps into the central aspects of the illness. For me, the disease comes straight out of poems and stories from Edgar Allen Poe's extreme and imaginative mind. CFS/ME is best characterized as an E.A.P.-related disease. No symptom is off the table, all symptoms rotate or evolve or worsen or change in an unpredictable fashion. The body - brain, heart, thyroid, gut - retreats into a posture of down-regulation - almost as if in hibernation, to avoid losing total control. All the senses are attacked in a flurry of confusing, seemingly disconnected symptoms. Everything becomes insensate - sight, sound, smell, taste, touch. No body organ is off limits to disequilibrium and disruption.
In 2009 I sat in a conference hall in London while Dr. Kenny de Meirleir flashed images up on the screen of severely ill ME patients in Norway. The photographs, videos or descriptions of these patients were truly frightening. (A young woman/girl spoke of having lived in the same house with her sister for the last four years, and of having never been able to see or talk to her sister.) The images seem to be out of the Middle Ages. The audience, doctors, researchers, patients and advocates, seemed to react in shock, as if somehow Dr. de Meirleir had done something inappropriate. Of course this is nonsense. But if those inflicted with this illness, or those treating this illness, cannot take a good look at the bottom, who can?
My essential point is that the picture of this illness, at its core, has not been presented very well. Perhaps, given the nature of the illness, this is impossible. Words, which are essentially rational, do not characterize it. Stories of particular patients, casually presented, fall short and invite disbelief. The essential nature of the illness, of the human "personness" seemingly being dismantled in an irrational fashion, frightens the onlooker. The fundamental character of this illness is chaotic.
Very few efforts have been made to portray ME at its core. A few videos have been made of patients "at the bottom". These are disturbing. Very few people have the skills and the sensitivity to "record" these patients - patients who cannot speak or cannot be touched or cannot hear, or cannot tolerate any stimuli at all. The very nature of the illness disallows getting close in a meaningful way. Few people have seen this, few people want to see this, few people try to articulate this state of "removal from life" itself. In the general give and take of the struggle for recognition of ME/CFS, these severely ill patients are forgotten, or left behind in their frozen silence, in their darkened room. They have no voice, doctors don't (or can't) see them, and consequently very few people - providers, doctors like de Meirlier (Are there doctors "like" de Meirleir?) - know and have seen their story. Obviously these patients do not show up at conferences or in doctor's offices. They do show up in Emergency rooms, where they are destroyed by the ignorant, crass doctors and nurses. In the meantime these patients are mute, and on their own - in the most primitive of medical circumstances.
A few individuals have made an attempt to engage this "removal from life" - to "take a look". The most successful is Natalie Boulton who compiled, edited and designed the book "Lost Voices, from a hidden illness" published in 2008 by InvestinME, (the second edition published in 2010). (I have written about this truly outstanding InvestinME organization here and elsewhere on my blog.) This frightening and uplifting book is everything you want to know and more. It has many personal stories and pictures of very ill ME patients in the UK. It includes a forward by Leonard Jason and responses by Vance Spence, John Chia, Jane Colby and Annette Whittemore.
These are the good guys. This book is a must read for those who can take it. A book like this will form the foundation for further investigations and revelations about the cruel nature of this illness. Look for more from this gal, Natalie Boulton - she is the best and she is a truth seeker. Doctors and researchers who are willing to engage ME/CFS should read this book. Maybe then they can sober up, and realize the true nature of this illness in its pure form.
"Lost Voices" can be ordered from Invest in ME here.