Saturday, February 12, 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.