This piece was written by Jenn Vesperman. Used with permission.
One of the symptoms of a significant proportion of CFS patients is a deficiency in the ability of the cell mitochrondria to make ATP from glucose.
That's the technical description. Here's what it means: cells take sugar from the blood in the form of glucose. But they can't use glucose for energy directly, they have to break it down into a substance called ATP. Once they have the ATP, they can do the various other things cells do. Brain cells think. Muscle cells move. Digestive system cells digest. Liver cells clean the blood. All of this stuff needs ATP.
So if the cells can't convert glucose, they can't do anything else.
If cells could not convert glucose at all, the patient would die. If they can convert glucose, but not much, the patient is very sick, with a variety of symptoms - and the exact symptoms depend on which cells are short-changed on ATP.
Healing usually occurs with cell division. Cell division requires ATP. To heal, a patient needs energy!
A CFS patient needs to budget their energy carefully. They need to reserve energy for survival, and for healing. I would recommend that they keep at least 25% of their energy for healing (not survival!). A particularly sick patient might go to 50% - or even 75% - of energy reserved for healing.
The other energy they can spare may need to be kept for doctor's visits, prescribed exercises, thinking (including processing grief for their health, and planning their lives), and maintaining their sanity.
They literally may not have the energy to do basic things - like walking to the bathroom rather than crawling or using a wheelchair, or using a bedpan.
Oh, they might be physically capable of it. But walking to the bathroom rather than using a lower-ATP-consuming alternative may mean that the patient then doesn't have the ATP available to actually coherently tell the doctor about a critical symptom. Or may spend that ATP, and lose energy needed to heal.
CFS patients budget their energy carefully. If you are a patient, plan what to spend your energy on. If you're a doctor, try to get to know your patient on bad days as well as good. If you're a carer, friend or relative, don't waste their energy arguing with them. Please.
