Lightning Process study in Norway - Given Ethics Approval February 2022

Somehow that's never part of the discussion even though it has incredibly damaging impact, all the way to denial of medical care. These people are literally our bullies and like all bullies they always play the victim. It's disgusting, morally bankrupt.

 

I didn't read all the comments under the article shared by the newspaper on Facebook, but it was pretty bad. It ended with the newspaper deleting the whole article and thus all the comments.

The articles are no longer to be found on the online front page of the newspaper. Perhaps that says something, perhaps not..

 

Maybe Dagbladet have realised they don't know who're the trolls and who are the billy goats.

 

Well this is interesting. Odd, but interesting.

 

Would be interesting to have a copy of them as an example, but it might be that no-one has them.

The Kelland pieces, the Guardian piece, one in the Times, etc... I think that things are pretty terrible in the UK.

 

which one was that?

 

Actually, the Times one was the best of them and probably shouldn't have been mentioned alongside the others... though still terrible: https://www.thetimes.co.uk/article/trolls-force-oxford-expert-to-stop-research-into-me-ttnb8gznv

There was one in the Daily Mail I could replace it with!

 

https://www.virology.ws/2020/05/30/trial-by-error-two-letters-to-dagbladet-about-its-me-coverage/

 

Michael Sharpe has continued to feed stuff to journalists but as far as I can see the open season on giving conference lectures on how awful patients can be dealt with has died down.

 

Even if it is true and we’re in a state of sustained arousal and stress I found all these therapies and processes made me feel even more stressed out

 

Hi, did you do the lightning process? Can you describe it?

 

Very good letters.

Big thanks to the letter writers Professor Jonathan Edwards and DrPH David Tuller.

Also big thanks to those sharing David's blog post on Twitter.

https://twitter.com/user/status/1266959227987415040

Code:

https://twitter.com/MECFSNews/status/1266959227987415040

https://twitter.com/user/status/1267008515408834562

Code:

https://twitter.com/StenHelmfrid/status/1267008515408834562

 

Are there links to any of the Dagbladet articles saying pwME are militant?

 

Yeah I did all of them, lightning process, mickel therapy etc if you look through my posts I think you can read about my experienceS? If not I’ll post them again, I can’t remember if I posted them on here or somewhere else

Any questions those things just ask and I’ll answer them all

 

With the Cochrane review and NICE guidelines coming up, I expect there will be more of this. It's always maximized for PR effect and there were pretty much promises of scorched earth attacks on Cochrane if they did the right thing, it's likely that this will be even worse given the high stakes.

The response from international organizations on Twitter to this hit piece is a good way forward. It's a complete lie to claim opposition is from a small unrepresentative vocal minority and they know it, showing it as such is important. It's pretty much the only message we can send but might as well make it loud. The wider and louder the response is from patient organizations all over the world, the less convincing it looks.

 

@Jonathan Edwards in your excellent letter you say

I think this is not an accurate comment. It is sensible and sufficient to focus on the methodological problems but it's not honest to say that the research isn't being criticized because it's "psychological". It is being criticized because it's based on a particular model (let's call it psychological-causation model) that claims the illness is perpetuated in large part by the thinking of the patient. The question of whether this model is correct is central to the debate and is not something that needs to be denied or downplayed. It's perfectly fine to criticize studies for their methodological problems alone but it's also not wrong to point out that there is no evidence the underlying assumptions (ie. the model) are correct and that a lot of patients think these assumptions are misguided and stigmatizing.

The CBT/GET people have framed the debate so that the message became "a vocal minority of patients don't like psychiatry/psychology" instead of "there is widespread patient opposition to the psychological-causation model". This should change.

There is also another interesting angle to look at this:

If researcher's assumptions about an illness are wrong, they will find it difficult to obtain positive results with a treatment based on these assumptions.

Unless the researchers consistently deviate from good methodology and/or distort their own clinical trial results.

If researcher's assumptions about an illness are wrong, you would expect to see patients criticizing their assumptions and any clinical trials would either show null results or be very flawed.

Patients see the flawed assumptions and researchers see the methodological problems and both observations are valid and important. They add up to one coherent picture.

Since the researcher's assumptions involve behaviour and thinking, and patients are well positioned to observe these over long periods of time, patients can contribute in a useful manner to the debate. The researchers do not have any evidence that shows patients actually have these damaging and false illness beliefs. It is just their opinion.

PS: so, where I'm going with all this is that maybe the next time you can say that you as scientist are pointing out the methodological problems, but that there also concerns about underlying assumptions of psychological causation.

 

That's not a good reason for criticising research like PACE though, particularly when so little is known about the cause of ME/CFS. If that is why some patients are criticising PACE then I can understand why researchers would see that as unreasonable and that this would be helpful to those looking to discredit PACE critics. I think that's an unfair characterisation of the patients criticising PACE though.

The 'all models are wrong but some are useful' view meant that there was not an expectation that the underlying models to CBT or GET properly explained patients' symptoms. There are problems with the way these models affected how patients were treated but it's important to focus on the details of that rather than making broad claims about psychological-causation. It's valuable to point out the lack of evidence for a lot of claims made about psychological causation, and how often weak results are presented in misleading ways, but those specific problems do not mean that PACE, or other research, should be criticised just because it's based on a particular model. A treatment can be useful even if the model underlying it is wrong.

 

I see it differently. The assumptions are important because they determine the treatment approach taken. If researchers continue to try and make a treatment approach work which doesn't really work, then it's important to criticize the assumptions that they are making.

Maybe this would be easier to accept if we had 10 clinical trials of antivirals with positive results only being possible with terrible methodology and researchers gearing up for more of the same, and people attempting to criticize the assumption of viral infection were told this is not allowed. It would be completely acceptable in such a situation to criticize any further studies for being yet another worthless virology study. In this hypothetical scenario, these researchers would need to re-evaluate their ideas even more than they need to improve their methodology.

Psychological theories that do not work and make no sense must criticized and discarded.

 

Live Landmark said a couple of years ago that 5 000 people had taken Lightning Process in Norway. I've read elsewhere that 2 000 Norwegians traveled to England to take Lightning Process there before it was available in Norway.

So that's 7 000 known costumers. There's probably been many more who has taken Lightning Process, and probably not everyone had ME. But from these numbers let's assume 7 000 Norwegian ME patients have taken LP (if someone have better numbers, please let me know).

Recovery Norge was founded in 2018 to share stories of recovered patients. According to Nina E. Steinkopf's blog there are now 27 individual stories about recovery from ME with LP at their site.

Correct me if I'm wrong, but won't that give an estimate of 0,39% success rate for LP for Norwegian ME patients?