Original on Youtube : http://www.youtube.com/watch?v=tIIZDx2BD5Y

Disability in ME Vs Psychiatric denial (Dutch Language)

Translated from Dutch to English by Cathy van Riel - Spanish version on www.plataformafibromialgia.org

Is the fatiguing illness ME “between the ears” or is it not? Dutch experts say yes and some experts from the USA and Belgium say no. People fight for ME in vain in the Netherlands (and Belgium) for recognition of ME as a real physical illness. In America they have managed it already. They have found indications that ME is caused by a virus for which you can take medication. And that is quite different than the behavior therapy that people with ME receive in the Netherlands (and in Belgium) ME is being addressed, but with virus or without it, how do you get it and especially those who are the victims?

Prof. Dr. Kenny de Meirleir: Everybody, everybody can get the disease.

Theo Wijlhuizen - internist at Zuiderzee Medical Center, Lelystad: In Holland there are about 30.000 real ME/CFS patients and people who do not fill the definition, there must be about 10 times as much, about 300.000 to 400.000 thousand in Holland.

Patient with ME: Recognition…. that it is not between your ears… they tell us so many times.

Journalist: That is what people say to you 'it is between your ears'

Patient with ME: yes

Journalist: So you get a responsible kick your ass: “don`t be pathetic”.

ME Patient: Yes, yes, and in the meantime you feel that it is a real illness. That there is something wrong with your body that decimates you soo much.

Journalist: This is Jacco van de Kuilen, a big guy of about two meters. He is photographer and takes pictures of motors and cars for expert journals. During his free time he always did lots of sports. He did judo at a high level. Till 10 years ago he wakes up and thinks he has a big flu. Later on this day is the first one of a dark period in his life.

ME Patient: First of all they sent me to a physiotherapist, because they said "it surely has something to do with the stress of your work". I was really speechless. Send me for that reason to a physiotherapist!. Short after that I returned to my GP and a blood analysis showed nothing wrong. I had a litany of complaints, it was incredible. I entered stumbling the practice and left it the same way, but with such a disillusion of “and what now?”They said there was nothing wrong and ...then started the big troubles.

Journalist: Jacco goes during years from one specialist to the other and nobody finds anything. He gets sicker and sicker and ultimately he is bedbound during a couple of years. Journalist: ME or CFS as it also is called as a disease that is difficult to determine by specialists. The disease consists of a litany of complaints. Chronic fatigue is the biggest. Little is known about the disease and not simply to demonstrate with a blood sample.

Theo Wijlhuizen: ME is a chronic disorder of muscles, joints and the nervous system so it consists in a lot of complaints of pain, poor sleep, affects your memory and your mind as well, and you experience concentration problems.

Journalist: Recently a U.S. study showed that a virus probably underlies the development of ME. The virus attacks the immune system so that bacteria, especially in the gut, can thrive luxuriantly. That is why Kenny De Meirleir – who is involved in this American study – treats his patients with a combination of antivirals, antibiotics and vitamins. In doses that are prohibited in the Netherlands.

How serious is it if someone gets ME?

DML: It ranges from very mild to very severe disabilities. I have here, in Norway, patients who I have to visit at their home, because they only can move their fingers. These patients are hidden from the world. There are at least 90 of them, but probably more. People who are completely invalidated in a dark chamber, they are due to the toxin in their intestines very sensitive to light and sounds, are in a confined space, fed with a probe, not moving anymore.

A fragment of the Norwegian documentary “Make me Well” about a very severely ill patient: Maybe she likes to hear she receives flowers. Watching them is too much. Hello Kristine, nice you let us in for a moment. I bring you flowers, three white roses. I’ll take one for you.  White is the color of hope.

Journalist " If it is such a serious illness and so many people are suffering it, why is it kept in secret and why isn’t it studied in an adult way?

DML: Well I think this is not the first time in history, that something like this happens, I think this also happened with HIV. I think this also happened with leprosy. That sort of things that eventually gets repelled. There are also different influences. There are both those who fear what it will cost - too big budget. On the other hand, the fright of finding something frightening.

Reporter: Better the head in the sand?

DML: Rather the head in the sand than eventually find out what is the underlying mechanism.

Journalist: but if this is the current attitude in Europe, perhaps even in the whole world, then the problem might be much greater than you just outlined.

DML: The problem is much bigger. I took for first time a young doctor with me, to visit that patient in Norway. He got totally emotionally traumatized because of it and has stopped studying his medicine study.

Journalist: when an estimated 90 persons are so seriously ill in Norway, how is it in the Netherlands?

Theo Wijlhuizen: There must be about 1000 bed bounded, nobody knows them, they get a few times a day visit from the district nursing, they do not die, but nobody knows them. And only when they get known, you can stick the label on it.

Journalist: And with the label of ME stuck on a patient, there are quite different treatments. In the Netherlands, the Radboud hospital in Nijmegen sets the tone. Netherland treats ME patients with cognitive behavioral therapy. To say it popularly "it is all between the ears" and "try to move as much as possible." Professor DML bases on chronic inflammation, particularly in the intestines. The Journal Ortho informed earlier this year in the Netherlands on the treatment of Professor DML. But what are the results? According to the Dutch-behavioral treatment, 6% of the patients achieve improvement. According to the treatment of DML 70% of the patients improve.

Theo Wijlhuizen: The people who are ahead of their time get opposition. Prof. DML is about 10 to 20 years ahead. He belongs, together with several others, to the world top in the field of ME/CFS. They got united in an organization that comes together every two years. Unfortunately there are no Dutch in that organization.

Patient: I can cycle again. I can cycle during one to one and a half hour. I can swim during one hour, I snorkle again, I can fish on the sea. I work five, six days a week. I recuperated 80 to 85 % of my energy. I still take probiotics and vitamins, sometimes an injection of B12. Yes, I’m ok. I feel good, I’m happy. I’ve got a little daughter I can enjoy, everything is okay now.

Journalist: We asked the Radboud hospital to participate in our broadcast. They told us they refuse to participate with professor DML in one TV program. They were prepared to a written statement: "Professor Van Der Meer, the leader of the Nijmegen CFS group, feels little for an interview for “EénVandaag” (the dutch TV-channel): due to the fact that you are planning to let speak Mr Kenny De Meirleir. He is known in the medical science known as someone who does not take the truth very close, to put it carefully. "