David Tuller: "Trial By Error: The View From Norway"

http://www.virology.ws/2018/12/12/trial-by-error-the-view-from-norway/

 

Thank you @dave30th for your article, and thank you @Andy for posting this.

Just one quick comment - a cure after a 3 day LP workshop - sort of like the magic in Hollywood movies - magic in a Hollywood context, and suspension of disbelief for entertainment's sake can be great. But in real life, magic does not cut it.

 

Interesting. The Norwegian ME Association seems like a very competent organisation.

I particularly liked this section of the interview:

"A few years ago, the Norwegian Research Council wanted to change how grants were given, after new legislation asked for more involvement from consumers/patients. They wanted to pilot a new model, and ME was chosen as the area to do so. A committee of patients, carers, administrators and health professionals helped write the invitation for proposals and conduct the first round of screening applications.

There was an application for an LP study from Live Landmark and a well-known professor who supports the biopsychosocial approach, Vegard Bruun Wyller. It did not pass the first round."​

I want this to happen in Belgium as well!

 

Any chance the Norwegians (@Kalliope maybe?) could give more information or maybe documents about this?

I think Belgian organisations could use this to show the government an alternative model that is allready in practice elsewhere.

Many thanks in advance!

 

Happy to!
The Research Council of Norway has written about the pilot project in English
https://www.forskningsradet.no/en/Funding/BEHOVME/1254021735078/p1254006410319?visAktive=true

And there's a thread about it here from February
https://www.s4me.info/threads/the-r...r-involvement-gave-users-real-influence.2621/

 

Very nice and interesting to read this blog post about the situation for ME patients in Norway. Tuller has covered a lot and provides an up to date account of the situation. Hope the blog post will reach some of the health institutions in the country. It might be sobering to know people are paying attention also from abroad.

I SO wish I could attend one of the lectures on PACE. Luckily one of the lectures got filmed (link in the blog post, well worth watching!).

 

Just read this. I see that Live Landmark @Livelandmark has retweeted @cfs_research 's joyous tweet that NICE will not change the guideline committee ie. not "bowing to activists" Good to see which side of the fence certain parties are on. ...

 

Awesome. Thank you!

 

Some pwME do seem to recover; it's not out of the realm of possibility, like the fellow when young, who had two years of bedrest, combined with minimal activity, NOT graded exercise, just doing a couple usual activities for a very limited time per week. So, not exercise as such, and to my knowledge no counselling either. My understanding is he has not had any ME setbacks in over 30 years.

As I understand, the recovery rate for ME, according to the CCC, is about 5 percent.

 

I don't really know what I'm talking about that, but I thought that they seemed good too.

 

They're Norwegian.

 

Now I can say that I know what I'm talking about.

 

I read the virology blog and left a comment (answer to Sten Helmfrid), but it seems it just disappeared?

Sten:

Cant really find the source here and now, but the estimation of 10-000-20.000 ME-patients in Norway, are based upon a long-going assumption of prevalence 0,1-0-2% of population when it comes to ME (CCC). That percentage not be right as you have pointed out, but I think that is the reason.

The 2000 per year and the "epidemic" bogus are troublesome, Landmark like to throw these numbers without any attempt for nuances. She did that in a Swedish newspaper in 2016 or 2017, like there should be substantial difference in actual cases in Norway and Sweden? Why? No attempt to explain, just the «naked» crazy numbers and that it? Wow. It really says all about lack of knowledge.

If there is one thing one would have to do, is look closely at possible reasons for numbers. There are complex factors for the diagnosis and misdiagnosis of ME. There may be an actual increase in patients from previous years. That could be reasonable, knowing that knowledge is somewhat better among some doctors, and it may actually be more people becoming ill. That should make way for a slight increase, but nowhere near these crazy numbers.

One thing we never should forget is that there have been and still are a significant number of misdiagnosis. One thing is lack of knowledge in primary care, a very important reason cause that is where these patients mainly belong and are "taken care of". Then we also do know, that even specialist care can get it fundamentally wrong when it comes to ME. The so-called National Competence Service have done absolutely nothing to raise proper awareness and addressing important topics. To juggle numbers are difficult in all circumstances, when it comes to ME at this time in history, almost if not impossible. We should try of course, but the quality of numbers at this time must be considered extremely low.

 

0,1-0,2% are crazy numbers? What would be more correct? And why?

 

No, these estimations are about right. What we can't accept is the 2000 per year and all the epidemic-propaganda. That is just nonsense.

 

I never heard about that. Any links so that I can inform myself?

 

From the blog:

Q: What are the estimates of numbers of ME patients in Norway?

We often hear about 10.000 and 20.000, but nobody really knows.
I believe it may be higher than that, since numbers from the Norwegian patient register show that there have been an average of 2000 new diagnoses each year in 2014, 2015 and 2016. We have seen a sharp increase in diagnoses the last few years

Cant really argue against whats registered (2000 per year), but its reasonable questioning the quality of those numbers, knowing the lack of knowledge and many misdiagnosis. We all know how the meaningless «fatigue» is lumped together with ME. So there should be a pretty strong mismatch among registered and actual cases.

When it comes to propaganda of an ME epidemic in Norway, this was stated by Landmark a couple of years ago in a swedish newspaper.

My main point is that one should be very cautious with such numbers knowing the difficult situation.

 

Thank you @Peter. I see my post was unclear. I mean why do think

Yes, absolutely.

 

Good points above. Misdiagnoses in both directions. Some of course with depression, and not ME, lumped in with ME. Some with other recognized diseases, and not ME, lumped in with ME.

 

Yes, it's probably good to assume those 2000 diagnoses are an artifact of something. It went by me in the interview so I'm glad someone raised it.