Grote dag, we gaan naar Brussel voor de protestmars. Het geluk zit me mee. Geen ziekte-opstoot vandaag. Ik blijf zolang mogelijk liggen om de reserves te sparen. Een grote bus haarlak en een veeg uit de potjes make-up verrichten wonderen. Een vriendin omarmt me stevig en zegt liefdevol dat ik er goed uitzie. Nog niet zo lang geleden uitte ze haar bezorgdheid voor mijn gezondheid. Ze weet welke ravages deze ziekte kan aanrichten.
De protestmars is een succes. Er zijn zeker 300 mensen komen opdagen. Een duidelijk signaal naar de Orde der Geneesheren, de overheid en de ziekenkassen toe. Zieke mensen hebben recht op een behandeling en de kruik gaat zolang te water totdat ze breekt. Dit proces is de spreekwoordelijke druppel.
Tegen het einde van de namiddag komen de muren van de kamer op me af. Intensieve activiteiten zijn nog niet aan mij besteed. De spierpijnen in de bovenbenen en –armen komen in alle hevigheid opzetten. Zelfs een stukje lezen lukt niet meer op het einde van de dag.
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Dr Cheney
I never will forget, in 1991 I was sitting in a hotel room with Dr. Suhadolnik when he was first presenting these data on RNase-L. He was showing these electrophoretic gels. [Electrophoresis is a method of separating out different chemicals in a mixture; they appear in different places on a gel slide.] You incubate human lymphocyte cytoplasms with a target messenger RNA. [Lymphocytes are immune system cells, and cytoplasm is the substance of the cell, excluding the nucleus and the cell wall. The purpose of the experiment is to see what RNase-L does to the target RNA.]
The RNase-L digests the target RNA into little pieces, and the pieces migrate all the way down the gel, and you can basically see little pieces of the RNA target displayed on the gel. He showed the gels of CFIDS patients, and of course he's a wonderful man and a wonderful scientist, and he's all excited about these blank gels he's showing to the group huddled in the hotel room. He says, "Look! Look, do you see this? Do you see this?" And I looked at these gels, and I said, "But Robert, there's nothing on the gel." And he said, "I know, I know; don't you understand?" I said, "No." He said "Well, it's because the RNase-L digested everything, digested it all completely, into such little tiny pieces that they had migrated completely off the gel into the gutter." He went on to say that the RNase-L of these patients will digest in 60 seconds a target ribosome that the RNase-L of a normal human being cannot digest in 60 minutes of incubation. [Ribosomes are spherical bodies within cells that are the sites of protein synthesis.]
When I finally understood that this tremendous rate of destruction of messenger RNA was going on, it suddenly dawned on me; I went from not understanding why these people were so sick to understanding why they were so very sick. And I remember the hairs standing up on the back of my neck as I realized, "I now understand this. I understand why they can be that sick, yet not really look like they should be that sick, because they have a disturbed physiologic system that's simply over-producing RNase-L and destroying messenger RNA" [and their cells are so badly damaged that they can't function].
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