Translation from Mythe: ME is een psychische ziekte
They are not just tired, but they are always exhausted. Sleeping does not solve the problem, if they ever can sleep well at all, and they pay a high price for physical effort of any kind: for days even more exhausted.
Cognitive behavioral therapy (CBT) and exercise therapy should be enough, according to actual medical guidelines, for patients suffering with the chronic fatiguesyndrome ME. This behavioral therapy is supposed to teach them to cope with the symptoms and the physical exercise (GET) that accompanies this treatment should lead to an improvement of their condition. A large trial executed by British researchers that was published in The Lancet in 2011, confirmed this approach.
The results of this study annoyed the patients. Some of them are in bed all day and they are exhausted if they have to walk down the stairs. After any effort they experience a so called post-exertional malaise: PEM. “There where doubts wether this study was correct” says Jan Willem Cohen Tervaert, professor of internal medicine and immunology. In 2016 patients succeeded to obtain trialdata. It became clear that data had been manipulated. The results were very poor. No more than 6,8% in the CBT Group recovered, 4,4% with extra exercise therapy and 3% from the patients who had no CBT nor GET.
ME-patients feel abandoned, Cohen Tervaert mentions. In the Netherlands their sickness, sometimes spontaneous, sometimes after an infection with Pfeiffer or Lyme and sometimes after a period of exhaustion, often is considered to be “between the ears”(psychogenic). Not in the least because there has been a search with no results finding a cause. For a certain period there was a research project at the Center for Chronic Fatigue at Radboud University Nijmegen. But as the initiator retired, the project diluted. There is so little fundamental scientific research in the Netherlands, that patients submitted an initiative at parliament based on 56.000 signatures requesting to ask the Dutch Health Council to give an advice on ME. Cohen Tervaert is member of the committee that will deliver this advice. Cohen Tervaert is an expert in the realm of vasculitis and auto-immune diseases. Apart from being a professor at Maastricht University he works in a practice in Groningen.
Triggered by the patients action, Professor Harald Merckelbach, professor in Legal psychology, wrote a column in one of the national newspapers (NRC). He too considers CFS to be a psychogenic condtion and he qualifies the remark of a cardiologist who stated that the preferred therapy might be harmful and that patients could even deteriorate and become wheelchair dependent, as “rabiate misinformation”.
ME is a wretched disease but not psychogenic Cohen Tervaert says. While in the Netherlands ME is arrogantly considered to be nonsense and nagging, the esteemed American National Academy of Medicine has concluded in a comprehensive report ME is a (complex) systemic disease. In Norway, where much research on this topic has been done and still is, and where even the prime minister asked attention for these patients, researchers come to the same conclusion: there is a disfunction in the immunesystem, a hormonal change, and the celmetabolism does not function the way it should.
One hypothesis is that the body is in a state of hibernation. Another hypothesis is that the autonomous nervous system is in a permanent state of arrousal wich makes patients very sensitive to stimuli of all kinds.
At this moment the committee of the Health Council is producing an agenda for scientific research on ME. We need mony to do fundamental scientific research. It will be important to clearly describe: when is one tired and when does one suffer with ME. Post Eexertional Malaise seems to be an important criterion to establish the diagnosis ME.