Norway: ME Forening (ME Association)

My Norwegian housemate found this horrifying but my attempted explanation of the Lightning Process made him laugh at least.

Also read it aloud to the office when I worked at Stanford. Unfortunately now Alex will ask me if I'm "doing a bad day" when I feel poorly.

 

I’m so angry. Unfortunately I can’t really get angry of course, as that would make me crash in about half a minute. I’m holding on to this anger for later use. Someday it’s going to blow up in someone’s face, preferably someone who deserves it.

 

Great decision by the Norwegian ME Association. It’s so disconcerting when countries such as Norway wants to push the psycho agenda.it will make them look really bad when we have papers publishing about biomarkers and hopefully it is not far out in the future.

 

All the more important that @dave30th makes an appearance .

 

I think the decision is good and right. There is no way you really could have confidence in the institute, that sort of made entry to ME around 2011. C. Stoltenberg and P. Magnus wrote a pretty bad piece in the major newspaper Aftenposten, most of all revealing very little knowledge, not really addressing the real problems and concerns.

Since then almost nothing of value has happened. There is this odd partnership with Landmark and corny interest in LP. Thats it, and the situation in Norway may be very close to the grim situation in UK. I sometimes get the impression that people outside Norway think the situation here is quite good or better, but that is not the case!

Yes, we have some bold researchers in Bergen, that at least have done a hell of a job. Some credit also to the research council for patient involvement, but except from that - alarmingly bad.

 

No worries. Just do a STOP-movement with your hand and visualise a palm tree, and you'll be fine. It'll change your brain, honest! And it works for EVERYTHING, so the rest of your office really should join in.

 

Dont forget to raise your back for good body posture and speak in a positive tone, - STOP DOING ME! I guarantee you it will make you «live the life you love», as the quacks like to put it..

quack, quack.

 

And even the research council included a patient who had recovered from LP to advice them. But still prof. Wyller's application for funds to his trial on ME and LP got turned down, and there was hell. Several letters-to-the-editor and social media debate about allowing pesky patients to have a say in research and stopping LP trials. Patients who oppose LP are led by ideology and don't want people to get better.

 

Yes, that’s right, hell broke loose.

If it wasn’t the case that patients got seriously harmed by LP, I would in principle welcome a study on the method that once and for all would close the case of LP. If we theoretically look away from the fact of serious harm - a proper study, meaning patients are correctly diagnosed, not diagnosed with everything else, - such study would be a thing of beauty. But we do know how B Wyller like to diagnose almost every living person with chronic fatigue, not ME. Due to the serious harm on ME patients (CCC) and all the ethical aspects, it's very hard to see that a study on LP actually can be done.

 

This is why Workwell wont do a CBT/GET PACE-like study. Its unethical, and will cause harm.

 

I'd actually welcome a comparative study on LP and CBT. At least in Norway prof. Wyller, the National Advisory Unit and LP coaches claim that LP has elements of CBT, and CBT has proven to have some effect against ME, ergo LP has effect against ME.

If it was done properly and by independent researchers, and also the ethical aspects with LP were examined (high price, not performed by trained personell, only participants who are "ready" can take part, it is trademarked, developed by a healer in England, no one takes responsibility if the patient deteriorates etc)

As neither CBT or LP are developed specifically as ME treatments, and both claim they can be used for almost all aspects of live, I see no reason to use any crumble allocated for ME research on this.

 

yum

 

So, by extension the Norwegian health authority considers NLP to be proven science? Because they can't have one and not the other. LP is based on NLP, therefore that implies NLP is considered to have scientific evidence. Which it doesn't. But it doesn't matter because they just make exceptions when it's convenient.

Good move by the association. It's a deliberate insult and this is the only response. It's a controversial disease by virtue of a fabricated controversy and as such cannot avoid discussing controversial topics within this disease, as PACE and LP are. But to refuse discussing one while allowing the other, despite the reasons for being controversial being diametrically opposed, is really just that: insulting.

Anyway, it's good to have this all publicly voiced and documented. When blame will have to be laid as to who screwed up, it will basically be everyone involved in health authorities. And properly documented over decades. What a massive train wreck this is.

 

As we know with PACE and other trials, that would not be the case. They would just cheat yet again and claim that it worked beyond all expectations. Everything is permitted in this research space as long as it confirms pre-existing biases.

 

I admit I've turned it on him and asked him if he's doing a bad day.

Another strange and characteristic phrase we use to check in with each other. When the experiment is going well: "IT'S A GOOD DAY FOR SCIENCE!" If not, "...it's a bad day for science. The worst day."

And gradually this became more of a general checking-in: "is it a good day for science?"

All people of science are inherently weird, in the best of ways.

 

Hungry?

 

Pure speculation - but I'm left wondering if the move to add the LP "review"/Landmark could be some sort of backlash against the ME Association inviting the "paceman" Tuller......?

 

The one good thing about all the drama in Norway this last week is that there has been a lot of opportunity to showcase that we are not exaggerating when we try to explain how bad the situation is.

Everyone understands that the Institute for Health has overstepped when they recommend an unproven, alternative treatment, regardless of whether it works or not. Their mandate is to provide evidence based advice and treatment recommendations, it even says so on their FB page. They are basically becoming anti science, and that should scare EVERYONE.

 

I suppose at least Norway is making an effort to provide employment for their trolls, and incorporate them into wider society. Shame you have the ones that rarely help humans, and not more moomin types.