In the late 1980-ies and early 1990, my cardiologist together with a biochemist at the hospital designed and performed a series of experimental investigations that really turned out to give some new results on what is wrong when you have CFS.
In short, something is wrong with the energy consumption, or as we cell biologists say the ATP metabolism. ATP is the prime energy molecule in cells, and most of it is produced in the mitochondria of cells. It was not that there is too little ATP, on the contrary the synthesis in my heart or skeletal muscle cells were 3-5 times the normal when tested on biopsies. Still, after only a few minutes work, the ATP levels could drop to only 10 or 20 percent of the normal values, while in normal people it only decrease 10 or 15 percent in total, during the same conditions. Furthermore, it took more than an hour of rest to regain the ATP levels I should have, while the control persons got their ATP back within a few minutes.
Another observation from these experiments was that the acidity, or pH value, inside the muscle cells dropped dramatically, from the normal 7.2 down to 6.0. This was so extreme that no one had seen before, and was believed the cells shouldn’t survive, but obviously I did – well my muscle cells was live and had no ultrastructural damages seen in many other conditions. When this result was repeated at several occasions, and with different techniques, we had to believe they were correct. The low pH was also related to production and release of large amount of lactic acid in the blood.
All these experimental data fits so well with the clinical picture! I can move around, but slowly in order to not ware out totally. However, when exercised in some way – like walking for a while slowly – it can take more than a day, even two days before I am back to my “normal” level of strength. And I still feel – always – as I have been running a marathon in my legs. That is a lot of lactate all the time, giving me muscle ache.
Later, I will try to tell more about the specific tests that were done – give more technical details – because I think this is a very important finding they did, not only on me but on a small group of people with CFS here where I live. However, it was never noticed at other research places, even though most of these results were published in scientific journals. One explanation could have been it was rather difficult and complex experiments to perform, but I really don’t know why.
Well, so much for my story today. No treatment came out of this, and I still suffering the same way, untreated. And the reason for this metabolic disturbance, the original cause, is still of course obscured.
But if you want, go ask your doctor about these things! Maybe there are someone that will be able to take up this again, and come a little further!