On the Shelf

I recently read Spillover by David Quammen, a book about human diseases that originate in animals. ME/CFS is not mentioned in the book, but a passage about the origin of HIV struck very close to home.

Quammen describes how HIV originated in primates in Africa in the very early 20th century. Researchers used tissue samples from the 1950s in the Congo to trace its early spread. Quammen visited the University of Kinshasa, Democratic Republic of the Congo, where those samples had been stored. In the absence of freezers and other equipment, samples were preserved in paraffin. Quammen describes the process of preservation: a tissue sample from a lymph node or other organ is dipped in successive baths of methanol, drawing out the water from the sample. The last bath is xylol to draw out the methanol. The dessicated specimen is then encased in paraffin to preserve it for storage. Quammen describes the storage area:

At the far end of the lab was another doorway, this one hung with a blue curtain. Professor Kabongo pushed the curtain aside and I followed him into a specimen pantry, narrow and tight, lined with shelves and cabinets along one side. The shelves and cabinets contained thousands of dusty paraffin blocks and old microscope slides. The paraffin blocks were in stacks and cartons, some of the cartons dated and some not. It appeared to be organized chaos. Spillover by David Quammen, p. 411-412.

The image of thousands of samples piled here and there, forgotten and left to collect dust in a hospital of a poor country, reminded me of ME/CFS.  One million patients: ignored, forgotten, and left to moulder on a shelf until one day – hopefully – a researcher comes looking for clues. That’s how I feel as an ME/CFS patient. I’ve gone through successive baths of major setbacks and treatment attempts that failed, and each one leached more life out of me. Instead of water removed by methanol, it is life and hope that is drawn out of patients, over and over and over. At some point, most of us shift from expecting to recover to simply waiting. We are like those paraffin-encased samples: inert, out of sight, unimportant. I see the room of dusty shelves of one million patients waiting for something to change. Each sample is a life frozen in time, enduring year upon year of exile.

I think this is what drives some of us to take drastic measures. We lash out at the government, we contemplate suicide, we scream and stamp our feet and wave our arms. We cannot accept personal and scientific abandonment. We will do ANYTHING to get off that dusty shelf. It is hard to understand the fury if you have never been left on a shelf to wither and die, but it is also true that fury can overwhelm and carry us away. We don’t always manage to target our efforts strategically. It looks crazy. Sometimes it IS crazy.

But ME/CFS patients have to choose: Will I endure a silent existence on a forgotten shelf, gathering dust until I die? Or will I channel the spark of rage and knock the shelf down?

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4 Responses to On the Shelf

  1. Johan says:

    Anger, frustration and rage are powerful emotions to set things in motion, but you cannot let them determine the direction of your actions. I can’t help but notice that in many cases patients are barking up the wrong trees.
    And now in a bit of shameless self-promotion I will link to an article, Is The ME/CFS Movement Ready For The Next Phase?, I wrote almost 2.5 years ago.

  2. Lou Burkett says:

    Wow Jennie, powerful stuff. The analogy is spot on IMO. Thank you again, Lou

  3. Marian says:

    A very powerful article, Jennie. I agree, we need to channel our frustration and make our voices heard in a rational way, clearly make our case to maximize our chances of being taken seriously. One million lives are far too many to waste, and one million voices can be a chorus too powerful to ignore.

  4. Shelly says:

    I just discovered your website, Jennie. THANK YOU! You describe our plight so well… I’ve been suffering with ME/CFS for going on 10 years now, and for almost 8 of those years I had no idea what I was suffering with… even after going to a vast array of doctors over the course of that time.

    I, too, want to “knock the shelf down”… But what do those of us do who are frequently too weak to even speak or read or type a message? That is the shame of of this situation… Many of the million people you refer to, who would LOVE to stand up and make our voices heard, are too weak to even get to the bathroom without help… Too weak to even speak much of the time… And getting worse…

    You describe our plight perfectly: “ignored, forgotten… Our lives frozen in time, enduring year after year of exile”… Than you for expressing so well what many of us are to weak to express…
    Thank you, Jennie!

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