Why Don’t We Take a More Holistic View Towards Our Health?
As a psychiatrist, Annemie Uyttersprot was diagnosed with Chronic Fatigue Syndrome and was confronted with a lot of scepsis in the medical community she belonged to. In this video testimonial, she takes you back to her experience and brings her own solution to the table. How we can help fix our fragmented health care system.
I’m a doctor, and it happened to me; which many doctors can’t imagine.
I had become sick, and I suffered from a chronic illness that likely is difficult to cure. And the worst aspect of my illness is that doctors are convinced that this illness doesn’t even exist. I’m a patient with Chronic Fatigue Syndrome, and it changed dramatically how I practice medicine.
My story starts in 1996. Before this time, I was a hard-working doctor and mother. Stress was part of my life as a neuropsychiatrist, and after the birth of my son, I was given a blood transfusion, which was likely the cause of my illness. In 1996, my body began to sputter. I became increasingly tired; no matter how much I slept, I could not get rested. A holiday of a month was not enough to recuperate. I even fell asleep during my consultations, and it could not go on like this.
As a doctor, I know all too well how difficult it is to discuss such kinds of problems with your colleagues. Professor de Meirleir was one doctor who takes care of the fate of these patients. And he was the one who finally reached a diagnosis: Chronic Fatigue Syndrome, something I had hardly heard of but not knew much about.
I stayed at home for three years. I missed my work; I missed the feeling of being useful. But I used this time to immerse myself in the issue. The fatigue field became a new challenge with many stumbling blocks.
As a sick patient, I had to go to the National Health Service. The doctors there put me literally in my underwear. I feel often ashamed because I always had to convince them that I was not yet capable of work. As a patient, you struggle to accept your condition, you feel ashamed of your illness, and also for the fact that you dare to apply for illness benefits.
Controlling doctors are anything but understanding. They minimize your complaints, and you will be viewed as someone who refused to work, who doesn’t want to get better.
In 2000, I was able to return part-time to work. I was better, but I was not cured. I had to find a balance between rest and work. I suffer from disabling memory and concentration problems which influence my daily practice. It’s why I focus myself on Chronic Fatigue Syndrome patients, a population with few acute symptoms, and it allowed me to have an income. I stuck my neck out for these patients, and I was not spared by the civil service. The few doctors who dared to go against the official guidelines were criticized and obstructed and convicted and afterward suspended by the medical association. I had to go through this too.
There is little support from the government and the medical association for Chronic Fatigue Syndrome patients. Doctors find these patients a burden and send them as soon as possible to a psychologist. The often heard voiced criticism they used to thwart my work was that I was not preferring the evidence-based guidelines, namely, cognitive therapy and graded exercise – the main therapy in many countries. This therapy was based on a UK-based study. After many years and a legal battle, it turned out that this study was based on fraud. Consequently, we lost a lot of time and thorough scientific research.
In the meantime, the USA had changed its policy and considers Chronic Fatigue Syndrome now as a biological disease.
How many of you suffer occasionally from a vague complaint? Headache, back pain, dizziness, nausea? I expect often. How do you react to your situation where your complaint is affecting your daily functioning to such a degree that you were not able to work anymore? That is the situation that Chronic Fatigue Syndrome patients are forced to face. They were previously active patients who at one time in their life were forced to deal with a substantial loss of energy, pain, and other symptoms, and there is no real solution. Faint complaints are 95 percent of the work of a family doctor.
The beginning of the therapy programming is very promising. It tries to link the complaint to the disease, diagnostic tests are performed and therapies are tried out. But when the complaint persists, when no markers are found, or when the therapeutic solutions decrease, likewise decreases the enthusiasm of the doctor. At this point, he starts to explain the symptom on a psychological base. The symptom is not medically valid anymore.
The ‘stress’ word is used for all kinds of symptoms that are not easy to explain. The neglecting attitude of the treating physician
takes over the environment, which results, again, in rejection. The continuous rejection plays a role in developing depression.
At the university, ‘specialist in medicine’ means that you’re a specialist in one function, one organ, one system. As long as a dysfunction is limited to one organ, many options of involvement of therapy are possible. But at one time, the dysfunction doesn’t belong anymore to one system, but to a network that spreads over the body, and this is a more complex situation and needs a more holistic approach.
You need a doctor who is aware of more systems in the body and informed about the latest developments in these fields. Think about a car with systems and subsystems. A car can only drive when all systems are set to each other and one is in charge of the whole functioning.
Fortunately, there are positive signs in the future. We are 20 years later now, and scientific research has confirmed my approach, once based on intuition.
And I got help. Professor Ron Davis, a geneticist at Stanford University in the USA and father of a son with Chronic Fatigue Syndrome, with a severe form of Chronic Fatigue Syndrome, has gathered around him many people from various disciplines and has put himself to elucidate the pathophysiology of Chronic Fatigue Syndrome, to find a marker and a therapeutic solution for his son.
We arrive now at the most important part of my discourse, namely, an attempt to find a solution. I focus my plan on fatigue, but you can focus on all kinds of symptoms. Thinking about all this, I came to the conclusion that a well-designed complaint clinic with a close connection to basic science could be a solution. The most important aim of such a clinic is to set up a therapy program based on the knowledge of the day. A therapy program in all its facets – medical, psychological, physiotherapeutical, sociological – in collaboration with basic science.
Currently, mainly General Practitioners are confronted with these patients; they send them for support to a specialist, and the specialist sends the patient back with the news that everything is alright.
Our clinic can be a link between the first and the second and third line and offer more solutions. It can set up programs with the university for treatment and for research, and the government and the social sector for work assessment and rehabilitation, and it can also set up programs for young doctors for training in holistic thinking.
There will also be a number of problems.
First is the financial problem. The policy at this moment in medicine is very strong evidence-based – which pathways the doctors should follow. In symptoms, the pathophysiology and the cause is often not known, thus you can’t work evidence-based.
Another problem is the remuneration of doctors – it’s remuneration by performance, and it favors specialization. Our clinic is new and different, and it’s difficult finding financial support from the government.
Another problem is finding doctors who dare to explore the gray zone of medicine. A gray zone with many ideas, much to prove, but very interesting. Doctors don’t like to leave their comfort zone.
And another problem is also finding affiliation. I think affiliation with a university is the best option because all departments are there, and their knowledge of scientific research.
Finally, we need the support of many people to set up such a clinic or to realize it.
This challenge and I mean giving a lecture, and it’s way beyond my comfort zone, is my call to realize it.
Still one thing – complaints are not going away. If we can’t find a solution, more and more people will suffer from it.
In this testimonial, she takes you back to her experience and brings her own solution to the table. How we can help fix our fragmented health care system.
Apart from being a medical expert and above all, she is also a patient giving her a unique insight into our medical system and how we can take it to the next level.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx