Saturday, May 7, 2011

What do we want?

We are housebound, bedridden, completely disabled, or struggling on in the workplace but unable to enjoy any life beyond the daily grind and the nightly collapse.

Do we want to die? Sometimes, but most of us hang on as best we can.

Do we want pity? A little sympathy, sometimes, would convey caring and validate our cause but no, there's no progress to be made from pity.

Do we want to lie down and give up? Again, sometimes, but every patient I know blogs, tweets, signs petitions, shares articles, makes art to sell to support research... participates in some way on patient advocacy and public awareness.

We want---not sometimes but always and immediately---what the victims of every other disabling disease get. We want funding for research.

We, myself, my two children, many of my friends, and millions more globally, are sufferers from neuro-immune disease (NID).

The following is from the newsletter sent to "Advocates 4 Answers volunteers by ANIDA (

The term neuro-immune disease refers to a group of complex multi-symptom diseases characterized by acquired dysregulation of both the immune system and the nervous system which may result in lifelong disease and disability. Included in this definition are similarly presenting illnesses such as ME/CFS, Fibromyalgia, Gulf War illness, and post Lyme disease. "Advocates 4 Answers" are helping by supporting a variety of issues that are critical to our search for answers such as:

- Requesting that neuro-immune diseases be defined and sub grouped by biological markers of disease
- Increasing National Institutes of Health (NIH) funding of neuro-immune diseases (NID)
- Requesting biological research across multiple institutes of health with leadership from the National Institute of Allergy and Infectious Diseases (NIAID)
- Designate funding for medical research "Centers of Excellence" for those with NID

These words convey strong, clear goals. Behind those goals lies the suffering of millions worldwide. Beyond those goals lies hope for some relief. 

I'm willing to bet that the people signed up as "Advocates 4 Answers" are in the overwhelming majority patients themselves. We volunteer though we're so ill from NID we can't carry on normal lives. We stand up, fight, collapse, and as soon as we revive we're back at it.

I'm making this blog post from my laptop, in bed. I could have been lying here watching a movie instead, and to be sure, on many days that's all I can do. Some days even that's too much for me.  Later today, tomorrow, later on in the week---I don't know when, but soon again, just sitting up will be too much. I'll fall down, I'll get up, I'll throw myself again against the wall of silence that makes me and my fellow sufferers invisible.

Please, if you are reading this and you don't have NIDs, please sign up at and join us. We want to do it all but we can't. We try so very hard to advocate for ourselves, but we need your help to advocate for us. With just a little of your time you could post a couple of flyers, maybe share a link here and there. With a few moments more you could write to your senator. Please stand with us, and, when we fall down, please stand for us.

The few researchers who care, know this: you will never meet a more grateful community of patients.

We don't give up hope that appropriate treatments will surface. After our hopes, we have lots of plans. When we get well we want to pick up our lost lives, we want to reclaim our friendships and work, we want to rediscover our hobbies and we want to shoulder our responsibilities. Many of us will remain health care advocates. Maybe, some day, the patient we advocate for will be you. Then, if no sooner, you'll be wanting what we want, too.

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

Tuesday, May 3, 2011

One Healthy Day

What would you do with one day of perfect health?

The question was directed to my friends with neuro-immune disease, for whom one day of health would be one day of relief from constant pain and other debilitating symptoms.

These are folks who, on most days, feel lucky if they can get out of bed or out of the house. They have to budget their energy carefully---choosing for example whether to wash the dishes or vacuum, and knowing that doing dishes or vacuuming will leave no energy for cooking. If they go over budget, they pay interest with increased pain for days.

So what would they do with a whole day of freedom, and no bill to pay afterward? Live it up in Vegas or Monte Carlo? Sex and drugs and rock and roll? Hang out in bars with Hollywood stars?

The answers were very consistent:

I would spend time with my family and friends.
Go hiking in my favorite park.
Go for a swim, out to lunch with friends, art museum, then dinner and dancing with a theoretical somebody.
Take my kids to the beach.
Walk my dogs, visit friends, go to a salon for a real haircut.

Not the high life, just a taste of normal life, was all these people wished for, without exception.

May is Awareness Month for Neuro-immune Disease. This month, I would dearly love to see more healthy people get involved in our cause. If we have to do all the advocacy, then the dishes, vacuuming and cooking are never going to get done, much less a beach day with the kids or a walk with the dogs.

Remember, every day of health may be temporary. Neuro-immune disease can strike anyone, at any time.

The new flyer from the WPI lists these statistics:

• Anyone can become ill with a neuro-immune disease 
• 1 in 300 suffers from ME/CFS 
• 1 in 150 suffers from fibromyaligia 
• 1 in 110 children are in the autism spectrum 
• Lyme disease is a fast growing epidemic (many sufferers develop a chronic illness) 
• Hundreds of thousands of armed services members have Gulf War Illness
Please consider printing out copies of that flyer and posting them everywhere. Your local cafe, bookstore, church, community center, library or bus stop might be the place where someone sees the flyer and decides to help.
My two kids and I, if we had just one day with our health back, might savor some time hiking or kayaking. I'd love to go dancing. I confess I might be tempted to waste part of it catching up on the dishes or the vacuuming, but the outdoors and dancing would take precedence if I had only that one day.
How about if we had our health back for good? Me back at work, both my kids heading for college, in summer we'd take that road trip we always wanted across the continent... ahhh!... but I would also make time out of that busy, healthy life to help others who were not so fortunate. 
Yes, I am trying to guilt you, here. Pleeeease, can I get away with a little guilting, just this once? Yes, I'm wheedling. Yes, yes. I want you to actually do it. 
Print out the flyer and post it in at least three places, please.  Then feel good about having done so, and enjoy your healthy days. 

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012