Lightning Process study in Norway - Given Ethics Approval February 2022

Very good news indeed. What a relief! The decision was unanimous, too.
Good work, everybody who kept pushing for this to happen - thanks!

Still, there are niggles. Like this:

Something to note for future submissions or complaints - which almost certainly will be necessary, if not in Norway then some place else. NEM clearly didn't understand the physical harm issues. One, referral to a psychologist or psychiatrist is not going to help. Two, there is no effective treatment of any kind for the "physical deterioration after increased activity" which, presumably, they don't understand can be severe and permanent. Somehow we need to find a way to get this point through to people in power.

 

To falicitate sharing:

Code:

https://twitter.com/Nina_Steinkopf/status/1400833312378261514

Code:

https://twitter.com/MECFSNews/status/1400826842932731908

 

This is the central problem with all research on psychotherapies.

 

Edzard Ernst added a comment on his blog article from last year:

https://edzardernst.com/2020/06/the...-unproven-hyped-and-expensive/#comment-131875

 

So, when they didnt get this study approved, my guess is that there won’t be a LP study. First, the decision is final from the ethics committee, no appeal can be done.
And then, if they try again, they would have to make the study a good one, and take the risks with it maybe to be negative. My guess is that they won’t take the chance, given the outcome on objective measures from the music therapy study, and others. Also that LL can’t select the participants herself, is one major obstacle I would guess, in a new study.

 

I hope you're right, and believe so. I think this has been an important project for the LP coach, obviously, but it's been interesting to see how they've moved away from using the name "Lightning Process" and instead calling it other things as 3-day-CBT-like intervention. I don't think there are anyone besides LP coaches that see any benefit with a study on this method now as it's become so tainted even those who sell it are reluctant to use its name.

But I don't think we've seen the end of people wanting to profit from the CBT track. Who knows, maybe a brand new trademarked method involving smile-commands and red dresses will surface?

 

Is their any mileage in asking the vocal supporters of the Bristol Lightening Process study to comment on this decision?

As well as asking the University itself to comment on how their study got ethical approval when in Norway it presumably would have been considered unethical, is it worth contacting the SMC ‘experts’ on this (see https://www.sciencemediacentre.org/expert-reaction-to-controversial-treatment-for-cfsme/ )?

@dave30th

[added link to SMC expert comment page relating to the Bristol study, also given the BMJ’s Archives of Disease in Childhood have already had to publish an editorial note relating to the failure of their peer review in relation to the Crawley article, see https://adc.bmj.com/content/104/10/e3 , what might be their response to the Norway ethics decision.]

 

Brian Hughes tweets:
This is outstanding news. Congratulations
@Nina_Steinkopf
and colleagues!

 

I also noticed, especially when HV on the Recovery site half a year ago talked about LL as a “former LP instructor”. They may have been trying to rebrand it as a “ME course”, and maybe try figure out and use the actual psychology used. Don’t know what PP thinks of that, but maybe they have his permission?

 

Also there is a strong financial incentive for any LP Coach to rebrand themselves and move away from sending a large portion of their fees to PP.

The former LP coach that made her way onto a national GP conference line up in New Zealand a year or so ago, had disaffiliated herself from the central LP organisation.

 

I think it's going to be tricky given that the initial pre course assessment was the stumbling block.

In LP everyone who does the course undergoes the pre assessment. As I understand they try to establish how much you are prepared to just go along with or whether you're the type to ask awkward questions. This pre assessment is seen as an essential part of the course & LP practitioners claim it's to see if the person is ready for treatment.

So if a trial doesn't include an LP course pre requisite then the trial is not trialling LP as practised in the wild therefore the trial would be pointless.

Unless, they change they way they run LP courses, of course.

 

Interesting.

So Phil Parker is being squeezed out of his own pyramid scheme. That's rough.

I wonder what his next trick will be.

May I suggest pulling the toxic illness out through a top hat. He can use a lump of coal as the physical manifestation of it. As good as any other BPS nons(ci)ense. And has an entertainment benefit. You may not get well but you've been entertained. I think that might be an improvement actually.

 

Please don’t give her any ideas on workarounds for the next application

 

For non Norwegian speakers like me, Google translate renders Live Landmark’s tweet ‘PEM er ikke spesifikt og kan kun måles via spørreskjemaer’ into English as ‘PEM is not specific and can only be measured via questionnaires.’

This demonstrates an ongoing failure to understand ME and what its symptoms involve. Presumably LL is understanding PEM as increased fatiguability and/or fatigue, as purely subjective phenomena [even though they too have potential physiological and observable behavioural correlates]. Do none of these people ever listen to their patients/clients or actually attempt to read and understand anything that disagrees with their beliefs?

I wonder if she understands the reasons why ethical approval was refused.

The issue of commercial secrecy rendering the proposed research unreplicable by any one independent applies only to LP research or similar, including research previously given ethical approval elsewhere, but the other concerns do relate too to the wider ME research relying on questionnaires and talking interventions.

[added]

 

Good question.

In the same twitter thread she also says (my translation):

There are no measurable division between patients with different degrees of fatigue. PEM is an unspecified symptom. And the symptoms are sensory perceivements. In other words; not possible to measure in other ways than through questionnaires.

..

PEM is a worsening of sensory perceivement after minimal mental or physical strain

ETA: Seems perceivement is not a word Not sure what to replace it with. Perceptions? Experiences? Impressions? Something subjective, for sure!