Finland: Big article about ME from the national public broadcasting company Yle

Yesterday Yle, the national public broadcasting company, had a big article about ME on their front page. There was also a segment on TV same evening.

Here's a summary of the article. (It's based on google translation and therefore contains a few guesses):

The article tells the story about the young adult and ME patient Linda, who is dependent on care from her mother. It also tells a bit about the general situation concerning ME in Finland, with several doctors offering their opinions. For instance neuroscientist and sleep expert Markku Partinen who says there is a lot of ignorance about the illness in Finland and that doctors often tend to treat symptoms with psychotherapy. Some of Partinen's patients have been misdiagnosed with CFS and find other reasons for their long term fatigue. Only one in five patients who come to their clinic with the diagnosis actually have CFS.

Infectious disease doctor Jukka Lumio has recently written an article about ME for the Finnish Medical Society (Duodecim) and emphasises it's a physical illness.

Treatments that are usually offered are GET/CBT, and the deputy chairman of the Finnish ME Association don't understand why doctors won't believe that the patients are getting worse from these approaches.

Neuropsychiatrist Risto Vataja defends the treatments and says from personal experience that they improve the patient's wellbeing. It's a rehabilitation treatment that aims to maintain functional ability.

Physician Olli Polo points to Norwegian scientists seeing it as a kind of energy shortage in the body. He thinks the patient's energy production disorder must be treated first. He treats his patients with drugs, nutritional additives and oxygen treatments affecting the involuntary sympathetic nervous system. But he has because of this been deprived the rights to continue with his private practice.

There are no national guidelines in Finland for assessment and treatment. But the Parliament has granted € 200,000 to develop recommendations for patient care. The Medical Association has put together a team of experts who will start working next month and will be ready by 2020.

The Helsinki and Uusimaa Hospital District is now establishing its own unit. This month a specialist care unit was opened in Helsinki where also patients with fibromyalgia and electro-hypersensitivity are referred. CFS patients worry that their illness will be diluted. Neruopsychiatrist Risto Vataja has led the work and assures that each patient will be treated individually according to symptoms.

Yle: Linda Sorrius elää uupumuksen ja pahoinvoinnin vallassa - Hän Kärsii väsymysoireyhthymästä, jota lääkäreiden on vaikea tunnistaa
google translate: Linda Sorrius is living with fatigue and nausea - she suffers from fatigue syndrome, which doctors have hardly recognised

 

An interesting point that has struck me recently is that the outcome results of the PACE trial make it more or less certain that it would be impossible for a practitioner to notice the positive effects of CBT and GET (if there are any) on the background of non-specific change with time. PACE shows that the difference between treatment and non-treatment with CBT or GET is so small, within such a large range of variation that a human brain would not be able to identify it correctly without doing a large randomised trial.

 

I fear that as usual the problems with psychotherapy trials will be overlooked despite being obvious. I doubt that they would be overlooked if the treatment was homeopathy or traditional chinese medicine.

 

Nice one. Gourmet stuff.

 

I think that the lesson I’ve learned in life regarding MECFS is never trust a neuropsychiatrist.
There always seems a mismatch between claims of effectiveness of rehabilitation and the initial case study. Why should it work unless we were sure the patient was no longer sick or without physical issues requiring treatment. The barring a dr prepared to go beyond rehabilitation seems common.

 

This sort of lumping is pretty consistently a bad sign.

 

I will boldly say that those two are evidently related and that it takes exactly the most minimal level of critical thinking to understand that. The hallmark of pseudoscience is not that it's based on magical thinking, it's that you can't prove it beyond anecdotes.

So 80% misdiagnosis rate. Awesome job. Great work. It takes some serious effort to be so far off what random chance would produce. Wessely's reaction to the nanoneedle paper included the fact that it's not really necessary since it's pretty easy to diagnose. Obviously if you don't care one bit about errors and simply discount them, you can definitely claim that anything is easy. I have personally cured well over a dozen of my own cancers using mind kegels and a diet of bagels (alliteration is a happy coincidence). I have no cancer at the moment. 100% success rate!

On a related note, I solved the gravitational quantum field equations. No, you can't see it. I can't quantify it either, but you can't prove that I didn't. And since you can't prove any of my past attempts have failed, I have a 100% success rate. Can't argue against that psychosocial logic, it's tautological.