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Subject: Another Christmas Season Lost

Thank you so much for your book Osler's Web. I have had this book for years and still refer back to it when I'm not sure if a sympton is new to the disease. I became extremely ill in 1987 at age 35 and here I am ending 2009 still ill. I guess on Christmas Eve I am reflecting upon how many years I have lost to this illness. My sons are now grown, married and living out of the area. My youngest just got married this Fall and wanted my husband and I to come to their home for Christmas this year. Oh how I wish I could. Traveling for me is extremely difficult and the four and a half hour drive may as well be four days. I have not been into a store to shop and do all my gift buying via a home shopping channel. Leaving the house is on rare occasions. I miss life! I was never lazy. I had worked for the same company for over 20 years when I had to finally give up my position in 1989. How dare a Dr. tell someone with this illness that it is all in their head. CFS patients have to deal with this illness virtually every waking hour of the day. We are trapped in a nightmare that never ends and have to deal with people who don't believe the illness even exists.

Well Christmas Eve is slowly slipping away as I look out the window watching cars pass by trying to recall what it was like to have a normal life and be able to attend church and truly enjoy family and friends. There is always the
hope of next year......
Donna



And a poem

Fern Hill


by Dylan Thomas

Now as I was young and easy under the apple boughs
About the lilting house and happy as the grass was green,
The night above the dingle starry,
Time let me hail and climb
Golden in the heydays of his eyes,
And honoured among wagons I was prince of the apple towns
And once below a time I lordly had the trees and leaves
Trail with daisies and barley
Down the rivers of the windfall light.

And as I was green and carefree, famous among the barns
About the happy yard and singing as the farm was home,
In the sun that is young once only,
Time let me play and be
Golden in the mercy of his means,
And green and golden I was huntsman and herdsman, the calves
Sang to my horn, the foxes on the hills barked clear and cold,
And the sabbath rang slowly
In the pebbles of the holy streams.

All the sun long it was running, it was lovely, the hay
Fields high as the house, the tunes from the chimneys, it was air
And playing, lovely and watery
And fire green as grass.
And nightly under the simple stars
As I rode to sleep the owls were bearing the farm away,
All the moon long I heard, blessed among stables, the nightjars
Flying with the ricks, and the horses
Flashing into the dark.

And then to awake, and the farm, like a wanderer white
With the dew, come back, the cock on his shoulder: it was all
Shining, it was Adam and maiden,
The sky gathered again
And the sun grew round that very day.
So it must have been after the birth of the simple light
In the first, spinning place, the spellbound horses walking warm
Out of the whinnying green stable
On to the fields of praise.

And honoured among foxes and pheasants by the gay house
Under the new made clouds and happy as the heart was long,
In the sun born over and over,
I ran my heedless ways,
My wishes raced through the house high hay
And nothing I cared, at my sky blue trades, that time allows
In all his tuneful turning so few and such morning songs
Before the children green and golden
Follow him out of grace,

Nothing I cared, in the lamb white days, that time would take me
Up to the swallow thronged loft by the shadow of my hand,
In the moon that is always rising,
Nor that riding to sleep
I should hear him fly with the high fields
And wake to the farm forever fled from the childless land.
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea.

MERRY XMRV XMAS!

We got by...

When did it stop being about you and become all about them?

Was it when they decided to pull their funding from a scientist who found evidence for a retrovirus, once she was thoroughly ground up in the cannibalistic maw of the Centers for Disease Control in 1991?

Marc Iverson, the North Carolina scion of the Nucor Corporation who founded the CFIDS Association--purportedly a patient advocacy organization--said he decided to pull the plug because Elaine DeFreitas had been so tarnished by CDC that even if she ultimately nailed down the causative virus, no one would believe her after the government mauling.

In 1995, David Bell told me, "Three years ago I came to understand that the CFIDS Association offered [DeFreitas] up. They said, 'We need to be on the good side of the CDC and the NIH.' Basically, there was a certain point at which the politics came up and the money thing came up, and they decided it was time to dump her," Bell added. "I'm stunned that somebody could be hurt so much."

Maybe that's when it stopped being about you. Eighteen years ago. When it was clear that instead of fighting for patients, or scientists who were trying to help patients, their ultimate goal was to get cozy with the CDC and the NIH.

When did it stop being about you and start becoming all about them?


Was it in 1994, when editors of the CIFDS Association's newsletter, its primary communication conduit with its members, were increasingly prone to submitting articles containing even mild criticism of federal researchers and policymakers directly to those researchers and policy makers for review prior to publication? Late that year a former college instructor, sick for thirteen years, proposed an article about the "paltry response" of the government to the epidemic. She reported that she was told that her article "might have to be cut, because the CFIDS Association (was) trying to work with the government."

Was that when it stopped being about you and started becoming about them?

To a disgruntled member of the group's Public Policy Advisory Committee, executive director Kim (Kenney) McCleary wrote that same year, "[You] want the Association to discontinue its present style of advocacy and employ 'rage' tactics similar to those employed by Act-Up and aggressive activist movements in the breast cancer movement...While I agree that we have a great deal to learn from the successes achieved by AIDS and breast cancer activists, there are several barriers to the Association adopting an advocacy style that depends so heavily on these strategies. First CFIDS is not accepted by the general public as a serious, threatening illness, like AIDS and breast cancer are. Second, there are no well-funded public education campaigns to provide a foundation for enlisting the general public in our efforts at this time. Third, rage, while powerful, is a volatile emotion that requires and consumes tremendous amounts of energy (and political capital) to sustain. It is difficult to control and can easily backfire. It erupts spontaneously in response to an incident or crisis and then peaks and subsides quickly. We must use it judiciously."

Kenney advised that in the years to come, "the Association will continue to build on [a] moderate, essentially mainstream, approach to advocacy."

At the time, Paul Cheney found a certain irony in the group's newfound compliance with NIH and CDC administrators. "It's an aspect of institutional growth," he told me. "They now see themselves as part of the establishment, and they're adopting the methods of the establishment."

Maybe that's when it stopped being about you, in 1994--fifteen years ago--and started being about them. (more…)