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:
NEM letter via Google Translate said:
It has been stated that the intervention may entail a risk of injury to the participants. This may in particular be negative debt reactions and possible feelings of guilt in the absence of improvement, as well as physical deterioration after increased activity in connection with the course. As the project has established a monitoring committee and a contingency group with a psychologist specialist and psychiatrist, NEM believes that the contingency plan for handling any injuries is satisfactory.
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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.
 
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.
 
benji said:
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.
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Well, is this the second or third attempt of an LP study in Norway? I think there's been two previously, one around 2010 when there were some issues with payment to Phil Parker (and probalby more ;) ) and then the other one in 2017 when the patient community were blamed in Aftenposten for Ahus not getting funding, and Forskningsrådet had to say this was not the case.

I'd like to see them try to redesign the study properly, although I would not wish it on any patient to go through this.
 
benji said:
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.
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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.]
 
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Kalliope said:
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
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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?
 
benji said:
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?
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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.
 
Midnattsol said:
I'd like to see them try to redesign the study properly, although I would not wish it on any patient to go through this.
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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.
 
benji said:
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?
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I've been thinking about this, because the payment (royalties?) to PP was not mentioned in the application and that was an issue about one of the former studies (there were some opinion pieces about this in Dagens Medisin). If no royalties were to be paid, have the course changed?

Invisible Woman said:
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.
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Agreed. So I'd like to see them try :P
 
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.
 
Snowdrop said:
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.
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After the funding for the "three day intervention" had been secured they did still call it LP, so who knows what the deal was. Here is a piece from Dagens Medisin in 2012 about the study they wanted to have then (in Norwegian, to tired to make a google translate): https://www.dagensmedisin.no/artikler/2012/09/27/vil-bruke-ni-millioner-pa-omstridt-me-metode-/

The same names that were involved in this new one.
 
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]
 
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Peter Trewhitt said:
Do none of these people ever listen to their patients/clients or actually attempt to read and understand anything that disagrees with their beliefs?
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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 :laugh: Not sure what to replace it with. Perceptions? Experiences? Impressions? Something subjective, for sure!
 
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