ME/CFS on Dutch Talk Show Today

There was a half hour segment about ME on a daily show ("5op2" on channel "Nederland 2") this afternoon. My Dutch is not great, but I was able to follow most of it. There were three guests: a patient (Sonja Silva), an ME specialist that works as the spokesman for a Dutch ME patient organisation (Theo Wijlhuizen), and a medical historian.

The ME patient had the real thing, and (I think) mentioned that she is currently in a remission. She talked about doctors being dismissive and sending ME patients to psychologists when they can't find a cause for it. She also said we get "written off".

I couldn't understand most of what the historian said, but the others were in agreement with him.

Theo Wijlhuizen spoke about the wide variety of symptoms, and something about vitamins. He also spoke about the "between the ears" (psychological) perceptions, I think, in a manner that indicated he didn't agree with ME being psychological.

The show did a flashback to Dutch news footage about ME from 1990, 2001(?), and 2010. Some of that was pretty crappy, and had Sonja Silva looking pissed off. I think some of it was simplifying ME as "fatigue".

The host was sympathetic with the guests (not adversarial), and the whole segment seemed pretty positive. Though I'm not sure I agree with Sonja's assertion that ME necessarily gets worse in the fall and better in the spring

Thanks, Valentijn. I'm going to watch the show right now and will report back with a summary. Theo Wijlhuizen was earlier on a dutch news show and spoke very supportive about Demeirleir. Unfortunately his CFS centre is not able to give good treatment (I think not allowed).

- The first 10 minutes were about a well known female television presenter/host who came down with ME/CFS. She told about her private life and said she's in a sort of remission now.
- As Valentijn mentioned, some small flash backs to earlier news shows. However, I don't agree with it being pretty crappy. While they said there is no real proof for an organic disease/origin/blood marker this is unfortunately true.
- The medical historian tells something about the definition of ME/CFS and how it was recognized by the WHO in 1969. He tells how hard it can be for doctors to diagnose ME/CFS because it has so many overlapping symptoms with other diseases. Pretty much says we don't know much about this condition.

- Theo Wijlhuizen (internest and establisher of a ME/CFS centre, not Nijmegen!) explains that in many cases the health care industry doesn't understand a disease and at some point the pharmaceutical industry finds a medicine and then all of a sudden the disease is 'bombed' with funding and people learn to understand it. Makes a reference to peptic ulcers and it's psychological origin explanation. The ME patient claims there are many more ME patients (450k vs 1 million) and many people don't know they have it *as a personal note, why she says this is beyond me because we know the CFS prevelances rates are grossly overestimated when we look at real ME*

- Host: 'While it's a recognized disease there are no treatments options'.' Wijlhuizen explains that ME/CFS diagnostic criteria are based on international concencus (* not refering to the recent ICC report*) and that we know there are 88 genes linked to this disease, but we don't know how much they interact and contribute. He's very compassionate and says doctors are mostly ignorant and say patients should be more active. Explains he as the same but after he had a patient with improvement on B12 injections and started doing research. He wants more research on genetic factors, immune and virological research and wants to use rituximab and more blood tests for subgroups. He says there are many initiatives worldwide.

I was suprised the whole show was about ME/CFS (about 25 minutes) but I'm a little dissapointed. Not only did it bring anything new for ME/CFS sufferers, I also believe the general public didn't really get a good impression how severe this condition can be. While bedbound and overwhelming fatigue are mentioned it are only tidbits. All in all it certainly wasn't bad at all and I'm grateful there were no psychological quacks from Nijmegen but I believe the show could be clearer.

Just a note: Theo is no longer working at that centre (Vermoeidheidcentrum Lelystad).

The show can now be viewed on Youtube here.

Even thou they are grossly overestimated there are many often those with severe ME with obvious symptoms/signs, who do in fact go undiagnosed.

I have a cousin (in Australia) who isnt diagnosed thou I believe she has ME... she lives home with her family taking care of her.
The reason why she isnt diagnosed was her doctors dont believe in CFS and think ME/CFS is just a in the head illness. Due to her previously being an athletic and coming down with the illness in her peak and they thinking she has a serious illness.. they wont diagnose her with ME/CFS. She's on disability with her illness with the doctors saying they dont know what her illness is (she got disability based on her symptoms).

I also heard of someone in England with severe ME who also cant get diagnosed with it due to severe symptoms and doctors not wanting to diagnose it in someone with obvious symptoms.

So its happening all over the world.. people with obvious signs.. not being able to get diagnosed. One doctor even said to me only recently when I mentioned I was once hospitalised due to ME/CFS and the tremors and neurological symptoms.. that I must have something else going on.

These parts sound very good to me!

Plenty of options to try. Just no standard treatment or cure.

We need more people pushing for more funding and this kind of research.

Thanks for the translated summary!

Is there any explanation for why he left? I'm a patient there (except that I'm not a "patient", according to the psychologist), and it's been feeling a bit like a CBT clinic lately.

Certainly, but I'm not at liberty to say.

There is currently no ME expert at the fatigue centre. Which btw also targets other groups, such as burnout patients.

One of the things they offer is mindfulness, which is of course a version of CBT. They offer no medicinal treatment of ME.

The ME internist at the vermoeidheid poli in the hospital does seem rather new to the job, and it took quite a bit of persistence on my part to get her to see me for OI. But yes, the only real treatment available from them is B12 and sleeping aids (and referrals to other specialists).

And the diagnosis of my ME was made by the CDC definition, not the CCC definition still listed on their own website.