Science for Patients:ME/CFSウェブセミナー　第二弾　「ME/CFSは、診断可能か」

Web Seminar by Prof. dr. K. de Meirleir, broadcast on November 9th, 2012

Definitely. ME can be diagnosed as a disease, because now we have criteria, clinical criteria. But on the other hand we have to stop excluding other conditions. And to stop concluding that if you meet these excluding criteria, you really have ME. There’s no gain in this. Not for the patient, nor for the physician. We have to concentrate on positive issues. We should look for different underlying conditions, mechanisms and disease processes. And we find them in most patients, or in almost all patients. We have to stop focusing on excluding diagnoses, or exclusion. There are a number of things that clearly don’t correspond with ME , but ultimately we have to think positively and search for mechanisms that will explain the symptoms.

If we consider ME and approach it in a positive manner, we notice all kinds of changes in the immune system. The immune system is dysfunctional. All sorts of chronic infections occur, which hardly ever – or rarely – occur in normal people. There’s a big problem concerning intestine disorders, there are underlying intestinal problems such as dysbiosis, or an increased intestinal permeability.

Then there are the effects of oxidative stress, which lead to DNA impairment, impaired proteins and structures, amongst other things. And we have also discovered prions, for example, in this condition. The mitochondria or ‘oxygen pumps’ in these patients function poorly too. Which leads to a shortage of oxygen and energy supply within the body.

Then there are cardiac abnormalities, heart defects. And we have seen that the heart is not being filled completely, that there is too little blood volume. Certain organs in the body, like the extremities, experience extremely poor blood circulation as a result of key changes. And the exercise capacity is extremely important. In the early phase of the condition, little reduction in exercise capacity occurs, but as the years progress the exercise capacity decreases quickly. Much faster than in normal aging.

That’s why we see that it is mainly the ventilation that is disturbed. The diaphragm, a very white muscle between the abdomen and the thorax, will start to function less well. People even become short of breath when speaking because ultimately the diaphragm will almost stop moving, or move less well. The ventilation reduction is quite spectacular and clearly present. The recuperation after minimal effort is at times badly affected as well. I’m seeing people who say: ‘I walked a hundred yards or I rushed to catch the bus and it took me a week to recover’. That’s not something you’ll find in normal people.

We’ve also come across neurological abnormalities. For example, various studies show that compared to normal people the grey substance or brain substance is reduced. There are also other disorders such as the malfunctioning of the short-term memory. The recalling of words, as well as other things concerned with the memory, can be so severely disturbed that you sometimes actually start thinking: Do I have Alzheimer’s? Patients often tell me during a consultation: ‘I’m just like my grandmother with Alzheimer’s, I have the same symptoms’.

And then there’s also an increased sensitivity to stress. We notice that there is a disturbance in the hypothalamic – pituitary – adrenal axis. Resulting in reduced cortisol. This is also the difference with a real depression. Patients with a genuine depression have elevated cortisol levels, while our patients usually have very low cortisol levels. But its origin does not lie in the adrenal gland, it lies in the higher brain, actually in the hypothalamus. Various muscle abnormalities have been detected. We also know that there is a malfunction at the molecular level of the ionic channels. Research has been done in that field as well. The mechanisms behind this have also been identified.

So these are for me the most important physio-pathological abnormalities that we are able to determine in patients. And which actually distinguish an ME patient from patients with other diseases.