“Let's be clear: The work of science has nothing whatever to do with consensus. Consensus is the business of politics. Science, on the contrary, requires only one investigator who happens to be right, which means that he or she has results that are verifiable by reference to the real world. In science consensus is irrelevant. What is relevant is reproducible results. The greatest scientists in history are great precisely because they broke with the consensus. There is no such thing as consensus science. If it's consensus, it isn't science. If it's science, it isn't consensus. Period.”- Michael Crichton M.D. and Author.
Dr. Alter’s paper had been accepted for publication before it was pulled to “get it right” while the CDC paper was published unchanged. This is highly unusual, and if the NIH/FDA paper is not published, as it was originally accepted, not only will the results of the paper be suspect, but the government’s agenda regarding the lives of M.E./CFS patients should become apparent to all.
There is no consensus in science. Science is strengthened by debate. Studies are designed stronger and better because of conflicting results.
The science of XMRV and its link to M.E/CFS must be able to stand or fall on its own without the interference of government. There are millions of lives at stake here.
Our lives are a life sentence. We are isolated in houses, in our rooms, with few to stand up to speak for us when we cannot speak for ourselves.
The story of what is in our blood and in our tissue must be told without influence or interference from politicians or bureaucrats.
It is amongst ourselves that we must build consensus. We have become so polarized and so fragmented over the subject of what to call this disease and how to define this disease that even while we are fighting for seemingly the same goals: treatment, awareness, and research funding, we are sitting in judgment on each other based on our diagnoses.
This is so prevalent that even our leaders consistently feel the need to justify their disease. This justification either comes in the description of tests taken, who we were diagnosed by, or words used to exclude people by diagnosis or definition of this disease. This exclusion only serves to divide us further and that division is what keeps us from becoming what we need to be in order to truly fight against psychiatric lobbies, an apathetic public, and governments who seek to keep us sick, divided, and in the dark.
Our division often reminds me of the story told about the death inquest of Sophia Mirza. Her story is well known to those of us in the M.E./CFS community. Her story can be found here if you are not familiar with it http://www.sophiaandme.org
Taken from http://www.investinme.org/
“Two pathologists could not agree which name to use - CFS, M.E. or M.E./CFS. In the end it was stated that CFS is a modern word for M.E. This is why CFS was used on the death certificate.”
This must be made clear: these two pathologists were not debating the illness that caused her death. They were debating what to call it on her death certificate.
That debate is manifested everyday around the world amongst patients; and between advocates. We use terms like ‘pure’ to describe our illness to make sure that the whole world knows we are not associated with that other group or we simply say ‘I don’t have CFS.’ Each of these statements, and words are used like knives to divide us from each other.
Who does that serve? Who does this division and discrimination serve? The origins of these words do not come from us. The origins of these statements come from psychiatrists and doctors who have twisted words and facts to try to get even you the patient to define a physical disease as a psychological one.
The World Health Organization classifies M.E., CFS, and PVFS all at G93.3. Yes, there is controversy because of differing definitions, politics, and the psychiatric lobby. But what does that really have to do with us? That is for science to sort out.
Raise awareness about our plight, and raise funding for biomedical research and scientists will sort out the definitions and their controversies through science and debate. Let the scientist’s debate. It is we who must build consensus!
The reason is that no matter how twisted the wording and definitions of M.E./CFS become it does not change simple facts. Whether your diagnosis is M.E. or Chronic Fatigue Syndrome, you are invisible.
You face the same discrimination from doctors, from family members, from workmates, from spouses and lovers. You face the same trials daily of managing this disease. You face the same humiliations in admitting your body was not like it was before. You face the dark each night wondering what the future will bring. You cower from the pain of the light, and the noise. You measure your words, because you do not know for how long you can speak. Your body pays the price of strong emotion and heavy mental lifting whether it’s reading, writing or both.
We face the same fight because we are all sick. All of us deserve compassion and understanding from doctors, politicians, friends and family members. More importantly, we deserve it from each other because we fight the same fight every day.
Whether our diagnosis is M.E. or CFS or M.E./CFS or PVFS, we fight the same fight everyday.
We are in the midst of a war for our very survival. Governments have been interfering with M.E./CFS research for decades and that interference will continue as long as we are divided as a community.
We must find common ground, and build bridges between organizations, and build connections between patients. We're all in this together. If we fight the same fights together, we will win this war together.
We live restricted by walls, but if all of us with M.E./CFS were to connect, and focus on one objective at a time, we would become the wall our enemies would smash themselves against.
“If we do not hang together, we shall surely hang separately.” Thomas Paine
Blue Ribbon Campaign for M.E./CFS
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