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)