ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Unity, disagreement, and respect
Thursday 17 February 2011
Unity, disagreement, and respect
There has been a lot of talk about unity lately. I'm not sure unity is what we need. What we need is to understand we are all in this together. What we need is to treat each other with respect.
There is nothing wrong with criticizing research. Researchers do it all the time. Just keep it professional - that means, criticize the research choice or the evidence or the model or the conclusions. Offer alternatives that might have been included. Conversely, as a researcher I know all too well that your research sometimes feels like your baby. But no one should take offense at a desire to discuss the nature, or quality, or results of the research.
Personal attacks are different. Again, you can criticize what someone says, in a constructive discussion. To do so, you have to be willing to accept disagreement. Without demonizing the person you disagree with.
So that is what it comes down to. Allow disagreement, but keep disagreement civil. Show respect for each other.
There are a lot of raw feelings out there right now. For the first time in 25 years, patients have hope. Hope is a wonderful thing, but it is also scary. With so much at stake - the tyranny of the psychobabblers v. recognition that we have a real disease, which would mean treatment, which would mean freedom - it is no wonder that many are on edge.
I know all too well what it means, because on Ampligen I am a real person (who has problems with stamina and shaking off illnesses). I am no longer in a cloudy fog, in pain and confusion 24/7. I can walk, can drive a car, read a book, write. Visit my grown children and grandchildren. Go places with my husband. Walk barefoot on a beach.
And I know the fear. I have lost Ampligen, an immune modulator that has worked for me since 1999, and spent seven months in 2008 terrified of the inevitable crash when my immune system folded and I would be attacked by multiple viruses. Knowing that at some point within a year, the anvil over my head would fall. And it did, in September 2008.
But at least I have an excellent specialist, Dan Peterson. I have had access to testing and treatment that cost much more than most of my friends have to live on. I have been very, very lucky. I have been back on Ampligen for almost a year and am much better. But it has come, for me, at a terrible price. I have to live in Tahoe (that part is okay!), while my husband of 36 years remains 2500 miles away, at home. I get to see him about once a month. I miss him dreadfully. But there is no choice.
Since collapsing in my office on October 24, 1994, I have known hope, I have known hopelessness, and I have known fear. I have known despair, but also peace. However, thanks to sound biomedical research and treatment, I have also known the excitement of being able to walk outside without a cane. I have danced at my son's wedding, and held both grandchildren on the dates of their birth. I had thought none of that would be possible again.
I understand all the emotions of having a disease that is not supposed to exist. I know why we strike out in frustration and anger, and sometimes confusion.
But we cannot go after each other - we can disagree, but we should not get angry because one of ours disagrees with us. We should not go after individuals like a pack of wolves. I've seen that, too, lately - and though I know it comes from the hope and the fear, it is still wrong.
So I am going to ask for something that would sound strange to an outsider, but we know better.
This is the time to be strong. Yes, strong. Strong in character. We know it takes strength to live with this disease. I know you have it. Now is the time for strength.
Resist the impulse to panic at the sign of a setback. Assume the best of those in our community. Allow competition and disagreement.
We must be strong and united in our quest for the truth.
Because that is what we are fighting for - the truth. We are in a battle for the most basic of human rights - understanding, treatment, and care. Our foes are those who have portrayed us as less than human, undeserving of attention. Their tools are censorship and propaganda.
We must stand together. We can disagree among ourselves - indeed, we must - but no one should be attacked for disagreeing, and in disagreeing, never personally attack one of our own.
We must be above petty infighting.
Because we are in a battle for our fundamental civil rights. God willing, we will succeed.
The above, with comments, originally appeared here.
And Mar published a follow-up post:
Why did I write yesterday's post? Because we are allowing ourselves to be distracted, energies wasted, by small things. We are in a battle for something much larger - basic human rights.
That is what we are REALLY fighting for. The right to be free of the propaganda and censorship that has stood between our illness, and treatment, since 1988.
Our governments - but most energetically, the governments of the United States and the United Kingdom, have deliberately sought to deny us respect, care, and treatment. Why? The insurance lobby. The cost of treating us. Making a name for themselves. Pathetic, pitiful reasons to ruin the lives of so many.
NIH allocates (at most) $4 a person a year - one percent of what NIH spends on Multiple Sclerosis, hardly an overfunded disease. The UK has just issued special research funding - but who will get that funding? Does anyone really doubt where it will go? More "studies" that portray The Disease as the product of "inappropriate illness beliefs". Imitation research, that blames the victims for their own suffering. More censorship of biomedical information, and propaganda dressed up as psychiatry.
The CDC says we are sick because of some vague childhood abuse. They have joined Peter White in "discovering" that a large number of us actually have major psychiatric illnesses. And CDC's website praises the UK's NICE Guidelines, even including a link - those guidelines that condemned so many sick people to going without any medical care at all out of fear of being forced into Cognitive Behavior Therapy and Graded Exercise. Now the UK is changing the rules for those who are too sick to work, who need government assistance. Shirkers all. How long before the US follows suit?
We deserve more. We deserve an honest appraisal of the peer-reviewed research. We deserve doctors, and treatment centers, and real research. Some have been waiting three decades for this. Some have been living their whole lives, stricken as children, imprisoned in this disease - and all government has to offer them is insinuations that they are sick because they were abused, or because they somehow secretly want to be sick. All government has to offer them is the threat of being removed from their homes. They deserve better. Their parents deserve better.
Our countries can do better.
The campaign of constant psychobabble is just that - a campaign. It is designed to portray us as "the other" - as "different." As not deserving of the medical choices a person with MS is entitled to. As not deserving of the medical choices a person who blew out his knee skiing, is entitled to. As not deserving of the choices a chain smoker gets when lung cancer sets in.
That is the recipe for denying human rights: portraying a person as "the other", not "one of us.". Not human, therefore without rights. In Anglo-American parlance, without the rights of free citizens.
But we are human. We are citizens. We deserve our rights as civilians, as members of the larger community. Our civil rights.
We have the right to be treated as human beings, not "weaklings," as Wessely loves to portray us when not in front of scientists.
All we are asking for is the truth. Disagree over it, come up with alternative theses - but start telling the truth.
Our enemies are the people in power who have portrayed us as "undeserving." Who censor the truth and issue propaganda in its place.
That's a big fight, and it's not easy. It calls for strength. We have that strength. It has been honed in the fires of our pain, suffering, confusion, and despair. Our isolation. Our loneliness. Our dashed hopes. And our cares for each other. We have somehow kept on, in spite of all they have thrown at us.
We cannot win this battle unless we stand together against our real enemies. We can squabble like any family does. But we must stop hurting each other. That also means the strength to allow disagreement - as long as disagreement does not turn into harassment.
We have to stand up to CDC. Stand up to NHS. Stand up to NICE. Even if standing up has to be done from a gurney.
Stand up as young people have in Tunisia and Egypt.
But stand together. With one common goal: we refuse to be invisible any more.
I have a quote from Martin Luther King, from a speech he gave at the end of the march from Selma to Montgomery, Alabama [see below]. In four years, his courage in speaking out for his rights would end in his death. He knew that was likely, but he still spoke up.
Keep this in your heart so that you remember what we are really fighting for. We are fighting for our rights as human beings. We are fighting for our freedom from invisibility. And we are fighting for the truth.
"I know you are asking today, ‘How long will it take?’ ...
“I come to say to you this afternoon, however difficult the moment, however frustrating the hour, it will not be long, because truth crushed to earth will rise again.
"How long? Not long, because no lie can live forever.
"How long? Not long, because you shall reap what you sow.
"How long? Not long, because the arc of the moral universe is long, but it bends toward justice."
Not long. We will not be invisible forever.
The above, with comments, originally appeared here.
Martin Luther King Jr.'s Alabama speech:
blog comments powered by Disqus