The following is a transcript between a ‘’Journalist’’ and Patient R. It is fictitious but Patient R’s replies to the fictitious Journalist are true to the words of a man who needs to have his say. The man who wrote this has had M.E for many years. This post and at least one other, to be posted next week, do not belong to me. I have permission to repost ( Approx 4 pages of A4 ) Between Right and Wrong Journalist : Respected clinicians have reported being threatened and harassed, to the extent that they have left this particular field of science. That should be a concern to all those who are hoping to find a treatment for this very debilitating illness. Some journalists have even afforded the term ‘’militants’’ in defining such protagonists. Patient R : We know that in the U.S.A. some of the most respected virologists in the world are searching for pathogens, including retroviruses in relation to this disease. Are the psychiatrists really leaving through the back door, whilst a number of the world’s most respected virologists make their way through the main entrance ? Is this really happening and if it is, does this point towards a Copernican revolution in the way this illness is being addressed. Journalist : If I may be so strident, why do M.E patients regard any intervention pertaining to psychiatric involvement an anathema ? If, as some have suggested, these threats are not the work of M.E. patients directly, they must be affiliated to that cause. Patient R : Shouldn’t the finger of blame point in the direction of the affiliates ? Why blame the sins of the father on the son ? Do the actions of relatively small numbers of people merit such a disproportionate response from radio, newspapers, bloggers and other journalistic outlets ? A philosopher once said, ‘’to he who has a large hammer, every problem looks like a nail.’’ It takes dedication to keep on hammering a defenceless group of very ill people. Where does the inspiration for such dedication come from ? Are these blogs an attempt to crystallise a backlash against a stricken group of individuals in the light of the demise of XMRV, served with capacious helpings of ‘’we told you so, we said it wasn‘t viral.’’ Journalist : Disproportionate ? I am not familiar with that premise. Are you suggesting that a concerted narrative is at play ? Patient R : I cannot prove anything, but I feel very uncomfortable in thinking that the pieces of the narrative are falling into place of their own volition. Journalist : Paranoia ? Patient R : If only it were so……. What would you say if a million people were active in the kinds of intimidation you have alluded to ? Would you still call them militants ? Perhaps you would call them something else ? When the numbers are small the protagonists are demonised, with appellations like militants, mobs, renegades, but as the numbers extrapolate beyond a critical mass, the semantics diffuse towards a more gentrified particular; like ‘’movement’’ or ‘’organisation’’. From ridicule to respect. Tell me how does that work and why ? I do not know the answers to these questions but I do know that buried in the machinations of political expediency there is to be found cowardice of the purest form. Journalist : A million people are not engaged in this activity; not so much a hypothesis as an implausibility ? Professor Simon Wessely and others working in this field have reported receiving death threats. A very well respected clinician, he has reported to have said that these threats have precipitated a growing sense of fear amongst his colleagues. There is no justification to be found in the facts of this case. Patient R : How many psychiatrists ( UK ) have been murdered, seriously injured, or even beaten up, in the last twenty five years ? Journalist : But one doesn’t need to be seriously injured nor badly beaten to suffer an intolerable existence; in fear of ones safety, constantly looking over ones shoulder as it were. Patient R : You are quite right, we can both agree that no-one should have to live an intolerable existence…… There are two kinds of people in this world; those that live an intolerable existence and those that live a tortuous existence. One has a voice, the other does not. Journalist : These scientists are trying to help very ill patients. You may question their methods, but their motives are based on a desire to help patients whom it seems, are not in a position to count on the help of many within the scientific community. Making progress in fighting a disease which is described as being extremely complex has to be welcomed. Perhaps now is not the time to be making enemies. Patient R : How much progress has really been made. How do you measure progress ? Who does the measuring ? I do not recognise ’’progress’’ in the context of this illness. Do you have children ? Journalist : I have two daughters, one eight and one three. Patient R : How would you feel if you were told that your youngest child had fallen down a Mineshaft; that nobody was sure which Mineshaft it is. You, being this little girl’s father, know her better than anyone; her foibles, her idiosyncrasies, her penchants. You are convinced your daughter has fallen down Mineshaft A. You are sure in a way you are certain that the phone is about to ring, and it does; you are walking down a street with a thousand windows, certain that one particular window hides a face; and it does. This feeling, perhaps spiritual, comes from a place beyond our comprehension, and now in the depths of despair, mother nature, adorned in her resplendent glory whispers in your ear and tells you the truth…….your child is in Mineshaft A. But all the rescue workers insist on looking down Mineshafts X,Y, and Z. They don’t see what you see because they can’t feel what you feel. You beg them to listen but they refuse; your anger threatens to burst its banks but they refuse; your daughter is dying but they refuse. You are prepared to accept that they are doing everything they can to find your daughter, but they are becoming increasingly intransigent, even as Mineshafts X and Y are searched and exonerated. You argue your case forcefully at the outset, but after four hours you became increasingly vexed, angry and aggressive. After eight hours you become violent as your blood boils with rage. After twelve hours you begin to breakdown on every level as your mental state shifts from fact to fiction and everything in between. Who would blame you for becoming someone you are not in such circumstances ? Give me a person who attempts to live on the highest of moral high grounds, and I, with the right circumstances, will show you how quickly a human being will fall. Journalist : Are you suggesting that your own frustrations, with the psychiatric community and the medical profession in general, is reflected by a man whose daughter is dying in a disused coalmine ? Couldn’t it be argued that this is stretching the point you are trying to make ? Patient R : That child is my life. That father is me. Not only am I trying to stretch the point, I am trying to catapult it across the entire length of the universe and beyond. Journalist : I am prepared to concede the premise that illegalities are met, in such circumstances as you describe, by an effusion of mitigating circumstances, but the law is the law. Patient R : When taking into account mitigating circumstances, I see a judge that weighs every fact, measures every detail. I have never heard mention the tortuous existence that I have to endure. I have never heard mention the doctors and psychiatrist’s that have added immeasurably to my suffering. I have never heard mention the fact that some of us are dying. Where are my mitigating circumstances, where ? What are you afraid of ? Journalist : Are you condoning the abuse, the intimidation, the death threats ? Patient R : I am not Journalist : Do you agree with the ’’militants’’ ? Patient R : I think their actions are counterproductive. Journalist : Will you condemn them ? Patient R : I will not condone them. Journalist : Will you condemn them ? Patient R : I will not condone them…………….