Sunday, March 14, 2010

An engaging project calls for volunteers.

Edit: Project canceled due to illness and lack of healthy, energetic volunteers.

It effects more Americans than AIDS, breast cancer and lung cancer put together. It causes more functional impairment than diabetes, heart failure or kidney disease. It creates a level of disability comparable to Multiple Sclerosis, chemotherapy or the final stages of AIDS. It strikes men, women and children. It costs the US $26 billion annually. It has occurred in epidemic clusters and may be caused by a transmissible retrovirus. Yet it receives inadequate funding for research, treatment and education, shunted aside by government health agencies. Doctors have nothing to offer their patients but a panoply of misdiagnoses or no diagnosis at all, and inadequate testing and treatment. Jobs, homes, marriages, friendships, the possibility of parenting, community activity, all fall by the wayside for the millions suffering from ME/CFS.

One researcher and author on this disease has pointed out:

“In the middle 1980s, families who had lost a relative to AIDS decided to create an AIDS memorial quilt. Everyone made a “block” and one day in 1987 they brought their quilt blocks to the mall in front of the U.S. capitol building in Washington. These panels covered a space larger than a football field. People stood together in huddles, weeping openly. Half a million people visited the Quilt that weekend. For AIDS patients, the quilt was a game changer.” -Hillary Johnson, author of Osler’s Web

We’re ready for a game-changer for ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A group of people with ME/CFS has come up with an engaging project design that could be as effective as the AIDS quilt, but we can’t do it on our own, sick as we are. We need healthy people who care, to make it happen. For more project details and volunteer opportunities, please contact

Monday, March 1, 2010

Stage 9 Action Against ME/CFS

Various models assign 5 to 7 stages to the grieving process.

They say we work through grief in stages from denial to acceptance.

I'd like to propose that a further stage, somewhere along the way (let's say stage 9, so we leave 8 open for the time being to anyone who wants to fill in a penultimate stage) (and perhaps this 9 I'm proposing isn't in fact the ultimate stage if you want to add being dead and therefore beyond caring or being in Tir Na Nog and having nicer things to think about or being in heaven and having achieved an understanding of how all the suffering fits into the plan of a god) ahem. Let us, as I say, propose a stage 9. Action.

It's beyond Acceptance. Nor is it equal to the earlier stages of Reconstruction, Working Through, Adapting to Loss. No. Action, real Stage Nine Action, means fighting back.

How do you fight back, if you've lost a loved one? People do it all the time. Make a contribution to the Alzheimer's Association, participate in a bike-a-thon for the Leukemia Society, contribute volunteer hours to the Cancer Society, join a letter-writing effort against a war via a church Service Committe, or join Mothers Against Drunk Driving. When a loved one is taken by an identifiable cause, and we've gone far enough in the grieving process, we get to work, fighting that killer. The fight may go on for the rest of our lives. That's Stage Nine Action.

It works in self-grief, too. People disabled by chronic illness have to go through stages of grief over the loss of a major part of our own lives. It can feel as if the person who we once were has died. We deny the reality of the illness, think surely we're misdiagnosed. We get angry and we ask, "Why me?" We try to bargain with everyone from doctors to gods to get our healthy lives back if we do x, y or z. We get dragged down into depression by the magnitude of our loss of activities, work and friends. We eventually reach acceptance and learn to live a different life, within the limits of the disease.

But acceptance can't be the end.

Beyond acceptance, there's action. Action to inform others. Action to increase research. Action to promote the search for a cure.

Loss and grief change us profoundly, whether we are grieving for ourselves or others. The loved ones of people with chronic and disabling diseases also suffer loss and have to go through grief. We come to the Acceptance stage with new knowledge, wisdom and strength.

These uses of adversity are not to be kept for ourselves alone. We share their great value through action.

Action may be as small as an email, a vote on an internet poll, signing a petition; but every time we take those tiny actions we take them for ourselves, for our loved ones and for the millions of strangers who may at any time be hit by the same force that brought us our own grief.

In my own case, both my children and I were hit by post-viral fatigue syndrome which in two of us developed into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. A small percentage of sufferers recover completely but to cling to that piece of information would be to stay in denial. There is no cure. There is no reliable treatment. There are only a vast plethora of possibilities, all requiring research.

If ME/CFS---your own or a loved one's---has brought you to grief, please consider enrolling in an email list to be notified of quick and easy actions:

Through that link, you can enroll to receive very occasional email alerts letting you know how to help promote critical biomedical research.

Some folks are dead, others can't take action, but you and I can click a button now and then to make a little difference.