RE: Re: A Tale of Two Controversies

[Guest guest]

Well said Peg , do you like the look of this? "Silent Tragedy of 800,000 Victims -- The Invisible Hostages" good emotive stuff , perhaps we should invite the author to share his thoughts with us ..I like the idea of a political campaign .. http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6418

-----Original Message-----From: infections [mailto:infections ]On Behalf Of PegSent: 03 May 2005 00:29infections Subject: [infections] Re: A Tale of Two ControversiesWow, this is so profound, it could have been me you were describing regarding being shunned at group after group, or turned away by doctor after doctor.Lately I have been consumed with this thought:It is not the terrorist who will be the demise of our world as we know it. It is the alarming rate of those who turn their head when they don't like what they see. Those who see wrong and don't say a word, the complacency is what is growing like cancer. I thought our generation was "enlightened" It seemed on the outside that we tackled all kinds of discrimination. We no longer speak ill of others in relation to race, gender, religion and a host of other no-no's. It was so silent it almost sneaks up on you, but I do believe there is another discrimination brewing in our land. It seems that the new attack is on the disabled. We are shunned and if not outwardly, certainly in hidden agendas we are told to go home and close our drapes, for the world doesn't want to deal with the infirmed.If they can't make us afraid, then they will shame us into silence. Most shocking to me was the treatment I received from members of a church. I became inconvenient, they said. I found others having the same response.It seems as though we are an embarrassment, for if you are on a prayer list just a bit too long, they wonder why God isn't answering your prayer for healing. Yes, I was told it might be better to take my name off the prayer list, cause it was causing others to ask many questions,like "wonder why she is being punished." I hope you take your words far and wide, if we don't speak up now, look at what we are leaving to our children.\My doctor confirmed that in all emerging diseases, it is accepted that a generation will be forfeited before help arrives. I'm afraid that two generations will be lost if our voice is not heard.Peg> The importance of pain management in Lyme disease should not be > controversial. Yet it is, because we are standing here at the > intersection of two highly dubious "controversies" in our modern > systems of "managed care."> > 1) The Lyme controversy> > The first controversy concerns Lyme disease, an epidemic which no > one except Lyme patients and Lyme-literate physicians seems willing > to acknowledge. The CDC has conceded the reality of the epidemic, > but done so in a backhanded fashion that leaves key questions like > the seriousness of this illness unaddressed. > > Alan Steere and his Yale colleagues have made an organized effort to > downplay both the debilitating nature of Lyme disease and the > difficulties that arise in treating it. Various explanations for > this odd behavior on the part of the CDC and invidual physicians > like Steere have been offered, but do not concern us here. What > matters is the carefully fostered, and unfortunately widespread view > that Lyme disease is an easily managed disease that poses no great > threat to public health.> > 2) The Chronic Pain controversy> > The second controversy concerns chronic pain, another "silent > epidemic" kept hidden not by the reclusive nature of its sufferers > but by an organized effort to deny or downplay well-established > facts. Several studies have found that chronic pain in the United > States is routinely undertreated. Case histories that could tear > your heart out are recited at conference after conference, in > Congressional testimony, just as they are when the subject is Lyme > disease. > > While in Lyme disease the great sins of public policy are largely > sins of omission, failures to come to terms with a frank epidemic, > in the area of chronic pain the sins are more aggressive. The > federal government uses our tax dollars to make effective pain > treatment more difficult for doctors to prescribe. The government > does this not on any medical basis but in the name of "the war on > drugs." > > If all wars have their "collateral damage," a euphemism for innocent > lives destroyed, chronic pain patients have been the principle > victims of the war on drugs. Organized crime, by contrast, reaps > enormous profits from this war and is arguably the main beneficiary > of its existence.> > 3) Where controversies converge, patients become invisible> > These two controversies converge in the treatment of Lyme disease > patients who present with severe, chronic pain. There are few > categories a patient can find him- or herself in, that carry a > comparable stigma or are less likely to be dealt with effectively by > the medical profession. > > There are many doctors who know Lyme is real and serious but will > have nothing to do with it. The same is true for chronic pain. > Unfortunately, character traits do come into play here and a > physician who is comfortable turning a cold shoulder to Lyme > patients is all too likely to manifest the same lack of empathy when > presented with severe chronic pain.> > So we are talking about a problem whose true significance is in no > way reflected by current standard practice, which goes unrecognized > by physicians and as a result is unreported and not accurately > characterized by current health statistics. We know there is a more > Lyme disease, and more undertreated chronic pain, than anyone > realizes. How large the two pools of patients are, and how far they > overlap, is regrettably a matter of speculation, but for those who > find such things helpful we can say with some confidence that we are > looking at not tens or hundreds of thousands but millions of > suffering human beings.> > 4) When the door is closed for any of us, the room it opens into > becomes less fit to live in.> > These things were true before I became ill, and I fear they may > still be true when I have either recovered or perished in the > effort. They have been the key determinants of the care I've > received - and more importantly NOT received - to date. Because my > illness partakes of these two controversies, physicians and > bureaucrats are often at pains to explain to me that their failure > to provide relief is "nothing personal." > > The experience of seeking care in this context has been for me, and > for many others, profoundly DE-personalizing. If I try to discuss > this in medical forums, I may be told that I am upsetting their > focus with "political" concerns. If I try to bring it up in > political forums, I am asked why I am dragging my personal medical > problems into matters of public concern.> > I tend to think questions with this kind of orphan status, that no > matter where one takes them are always referred somewhere else, tell > us things about ourselves and the times in which we live that we > can't learn any other way.> > An obscure woman, apparently guilty of getting pregnant by someone > other than her husband, goes door to door, seeking a place to lie > down and give birth. No one has room. For Christians, this story > describes the arrival in the world of the messiah, possessed of > truths which no human being can afford to ignore. In this very > Christian country of ours, there continues to be "no room at the > inn" for those who lack the good fortune to suffer from an approved > condition.> > Every tale of woe contains the seeds of its own redemption. If one > believes, as I do, in the essential relatedness of humanity, the > redemption of any one person's suffering can lighten the burden of > suffering for all. It is this promise, born anew every time another > human being enters the world, which we reject, under cover of > controversy. It is no wonder that our institutions are not fit for > human habitation, when one considers those who are barred from > entering.> >