#pwME: IHHT oxygen therapy cost me a fortune this spring. I think, and, it strengthened my mitochondria a bit. However, the effect didn't last long, because it ended in a stubborn two-month infection. I do not know, whether I should start the whole arduous therapy again, just, to achieve a slight improvement, before winter comes. I know, that mitochondrial therapy can help with fatigue and post-infectious chronic fatigue syndrome, but not in a presumably autoimmune disease of the central nervous system such as myalgic encephalomyelitis. Apparently the research is no further ahead, and I stopped following it for a long time. There is simply no money being made available, to finally make research possible, like she did at M.S. or AIDS and other diseases of civilization. I insist, that the hybrid ME/CFS is fatal for them, who suffer from ME. And I understand, that no funds can be released, as long as you assume the error, this disease is fatigue. In one of the latest German television interviews about ME/CFS, A German doctor and the father of a seriously ill daughter are amazed at the gap in the medical system, they are amazed, that they are left alone, and they describe ME as a disease, which has a special status, because any activation makes those affected sicker. ‘Opening a bag of crisps in the same room caused my daughter untold distress, She felt even worse for hours afterwards.’
And, that's the way it is. We all know that; who were in the severe or most severe stage. I was there too. And there is always danger, that I too will fall back to this stage. But my experience is this, that it is pointless, the horror of this disease, to convey their deepest level of life. People are not open to this, neither relatives nor people from the health system, Politics and institutions. There is only one way; and that is the decoding of the pathomechanisms, solid research and patented therapy. Only then can we clear up all the horrendous errors and abuses, which took place for almost a century around ME sufferers and the incorrect handling of the disease. Those affected by Long Covid have more strength than us, her post-infectious attacks are still in the past. Because of them, the ME/CFS has doubled. You now have the indignation, that we can no longer afford, and the strength, to fight, like we did for decades.
As I said, my horizontal years are interrupted by moments. It can always be the last ones, but there can be more. Last but not least, it depends, how much I can do it, mentally, to force myself to rest and vegetate.
This July I had one type for two weeks “Hoch”, probably just an adrenaline rush, perhaps they were the offshoots of mitotherapy. In any case, I turned to the light, the sun, the water, exposed to the heat and also some people. I was at home, and my chauffeur, W.F. Suter, brought us into nature. But then I also wanted to be completely alone, reach the hill of the forest, sweating and like the old days, feel the body, Tire the body at least once with healthy physical activity. I felt an incredible anger, because it cost me so much effort. My nerves became more and more fragile, the less my body recovered, the more adrenaline he pumped in; just, about the collapse, to resist sinking into the state of hibernate.
I've been sinking further and further down now, it was to be expected, my summer probably lasted two weeks, but I have the pictures of it: internal images of conflict and euphoria. Of anger and joy. Of melancholy and despair. And, externally: the images of idylls, of the forest and the meadows, a backdrop of the existing, Childhood memory. And everything around has changed.
