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.


  1. I'm glad to see you are stepping back from the inflammatory blog you posted in three different places on Phoenix Forums. Perhaps you should take those postings down now, or at least edit heavily.

    I'm glad to see you now agree that it is OK, and necessary, to critique bad research, and allow for different emphases in advocacy. Mindy, Khali and Heidi deserve an apology from you.

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  3. Mary Schweitzer, I am so sorry. I got you mixed up in my mind with Marly Silverman. No excuses, just severe embarrassment on my part.

  4. Well said, as always, Mary. The infighting drives me crazy and is why I avoid most patient forums. There are too few of us and we are too weak for us to cling to divisions!

    Seizing on one of your asides here: I, too, have had the expensive treatment - I'm a patient of Paul Cheney's - and it's made some difference. I'm still bedridden, of course, but I'm able to type this comment and I'm back to blogging a bit, whereas I had a long period of lying still in darkness and silence before I got to the top of his waiting list. I feel a bit guilty about it sometimes - I know there are lots of people who can't afford him. We can live on my husband's salary as a professor here in pretty cheap Western Pennsylvania, and use my disability to pay for Cheney and his long protocol.

    I hope someday to have function like you do. Not sure yet what'll get me there - Cheney has high hopes for GcMAF. We'll see - hopefully this spring.

  5. Hello Mary, mostly alive person in NV,
    I agree. However, now we have so many people in social networks who have not had a voice, the anger bubbles to the surface and then BOOM.

    We have no idea what people have experienced. What person with this CRUD illness has not been ridiculed by authority figures and sometimes by loved ones? SO, it makes sense to me that on the internet when a post sounds aggressive, sounds like the voice of authority, people may push back hard simply because it FEELS like being powerless once again. People attack because they can. I am not saying this is okay. But, it makes sense that it would happen to us as Actions and campaigns and forums and discussion groups flourish.

    The best thing would be for a person to come back and say....I am sorry. OR if the post WAS aggressive and parental sounding, the person who posted should correct that.

    YEAH, I know, nickel shrinkology from WIsconsin. But I know this territory well in family dynamics when I was a child, my years of teaching at risk kids and then in years of talking to patients. So what to do when there is so much infighting. I don't know. It is never right to crucify another person with flaming and backchannel hate mail. YEARS ago, when I saw this, we lacked so much information, the drivel exchanges got to gossip about who was sleeping with whom. NOW, we have INFORMATION and can try to verify to find facts. It is wonderful.

    It is always right to look for truth, but truth is fluid depending on a person's background. Documented facts ...not fluid. Just some jumbled thoughts. THANKS MARY.

  6. Last May you chose to involve yourself in a personal conflict I was having with someone on FB. Even though I stood up for you more than once on forums, you chose to believe her lies and via email invoked a "plague on my house." No apology was issues and I was demonized. I hope this post is more than talking the talk, that you've learned to keep out of other peoples business and control your own personal attacks.

  7. Jace just showed what Pat was talking about. She wrote an impassioned angry post ... About something I did not do. When she realized it, she apologized. There.

    Raven, I was very sick last May and have absolutely no idea hat you bare talking about. I have uaed at times the phrase from "Romeo and Juliet," when Mercutio is dying and says, "a plague on both your houses," referring to the feuding families in the story. It means, "I give up! You two fight it out yourselves.". It does not literally mean a plague on your house,

    Can you email me privately on Facebook?


  8. Thanks Mary. Excellent blog. This is a shellshocked community, and you describe perfectly why sometimes even hope is a scary place to be.

    Pat's comments are excellent as well. :)

  9. Thank you Mary for your insight. We need to focus on what we can agree on.

    Laurel's recent blog post sharing how advocates are working to create awareness and change:

    Thank you Khaly for your positive comments, I agree we are all shellshocked!

    Let's try to focus on the goal of a huge increase in appropriate BIOMEDICAL funding that will ultimately impact the quality of life for us all.

  10. Mary, I think what you are describing IS unity. Unity is not sameness, lack of diversity, or lack of disagreement. Unity is not a dictatorship or monolith. In my opinion, unity means working together with respect, consideration and understanding, despite our diversity and disagreements.

  11. How I love you bloggers and long time advocates. Your Voices make my life so much richer.

    I've only had a computer for two years, LOL, and only "found" FB this past July or so, and as a SG leader for 2 years, I only had print media as sources of information. I guess if a newbie came online, they would be very disappointed in us. I shall strive to be compromising with my fellow patients as I know how badly the brain problems can sometimes affect our judgement; I shall strive to care about them personally and not hold them to a higher standard than I hold for myself; I shall strive to join THEIR actions and advocacy efforts out of respect for their time and energy, and I shall strive to always read these incredible blogs!

  12. Thanks for this, Mary. I appreciate that you continue to share reports about your better health, and your astute observations here. I am grateful.

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