Taking Charge of Your Health

Translator: Rhonda Jacobs
Reviewer: Peter van de Ven I’m a doctor, and it happened to me
what many doctors can’t imagine. I had become sick,
and I suffered from a chronic illness which likely is difficult to cure. And the worst aspect of my illness is that doctors are convinced
that this illness don’t even exist. I’m a patient with CFS, and it changed dramatically
how I practise 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 kind 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 for your illness and also for the fact that you
dare to apply for illness benefits. Controlling doctors
are anything but understanding. They minimise your complaints, and you will be viewed as someone
who refused to work, who don’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 practise. It’s why I focus myself on CFS 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 criticised 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 CFS 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 CFS 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 any more? That is the situation
that CFS 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 any more. The ‘stress’ word is used
for all kinds of symptoms [which] 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 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
don’t belong any more 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
for the whole functioning. Fortunately, there are
positive signs on 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 CFS,
with a severe form of CFS, has gathered around him
many people from various disciplines and has put himself to elucidate
the pathophysiology of CFS, 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 GPs
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 programmes
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 programmes
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 strongly 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 remuneration of doctors – it’s remuneration by performance,
and it favours specialisation. Our clinic is new and different, and it’s difficult finding
financial support from the government. Another problem is to find 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 to find an 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 realise it. This challenge, and I mean
giving a lecture, and it’s way beyond my comfort zone, is my call to realise it. Still one thing – complaints
are not going away. If we can’t find a solution,
more and more people will suffer from it. Thank you. (Applause)

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