Landmark et al: CFS and experience with the Lightning Process

[mango]

Chronic fatigue syndrome and experience with the Lightning Process

L Landmark　R M B Lindgren　B Sivertsen　P Magnus　S Conradi　S N Thorvaldsen　J K Stanghelle　

The cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) is not well understood and is disputed, and therapeutic options are limited. Many patients who attended the Lightning Process course reported positive effects. This should lead to a randomised controlled intervention trial.

Since 2008 several thousand patients with CFS/ME have attended the Lightning Process (LP) course in Norway (1). The course is a three-day intensive mental training programme with the option for follow-up. Although what triggers CFS/ME in the individual case may vary, it is assumed that symptoms maintenance and chronification can be attributed to a stress response with elevated state of alertness and persisting activation of the sympathetic nervous system, driven by classic and operant conditioning mechanisms. The Lightning Process is based on these theories of stress. [...]

Nr. 5 – 15. mars 2016
Tidsskr Nor Legeforen 2016; 136:396
doi: 10.4045/tidsskr.15.1214

http://tidsskriftet.no/article/3463468/en_GB

 

[sarah darwins]

The second study investigated patients’ experiences and found that higher scores on understanding of one’s own condition, feelings of confidence towards the course leader and positive bodily response distinguished patients who reported a positive effect from patients who reported a negative or no effect

There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call the Twilight Zone ...

 

[justy]

Seems amazing doesn't it that you can have this and Fluge and Mella's work in the same country at the same time.

 

[deleder2k]

Two crucial things:

The main author, Live Landmark is a Lightning Process instructor and has earned a lot of $$$ on this. A weekend course is approx £1,500.

and:

A telephone questionnaire survey was conducted in collaboration with Godthaab Health and Rehabilitation of all participants who had attended Lighting Process courses in 2008 (7). The majority reported an improvement in quality of life and activity level. The improvement persisted one year after course participation, and no serious adverse effects were reported. The user survey of course only allows the generation of hypotheses, but indicates that the course can have a positive effect on these conditions.

The questionnaire survey was done by Landmark in collaboration with Godthaab Health and Rehabilitation. The survey doesn't mention what diagnosis the participants had.

 

[TiredSam]

We've discussed Live Landmark before and I'd happily forgotten all about her in the meantime. This thread is an unhappy reminder that they don't go away and stop doing damage when you cast them from your mind (which in a way is a refutation of their "negative thought pattern" crackpot ideas). The usual suspects are in the references - Chalder, Crawley.

At least the conclusion:

CFS/ME can be debilitating for the individual and represents a significant societal problem. There is a great need for more research on the effects of various forms of treatment. The Lightning Process has shown promising results, but these need to be reproduced in randomised controlled trials. Before the results of such studies are available, the evidence base is insufficient for recommending that the Lightning Process be systematically used in the health services.

offers a glimmer of hope that it won't be "systematically used in the health services" yet, but the fact that they even refer to such a possibility is disturbing enough.

There is a comments section, but I'm not sure it's even worth engaging with such people. If they can say "There is a great need for more research on the effects of various forms of treatment" whilst not referring to the work of Flug and Mella in the same country ...

The main author, Live Landmark is a Lightning Process instructor and has earned a lot of $$$ on this. A weekend course is approx £1,500.

Indeed, she declared this in the COI

http://www.livelandmark.no/lightning-process-norge/

The telephone questionnaire survey is valueless, anyone who's been on an LP course has already learnt that it's a thought crime punishable with a large dollop of peer ridicule, blame and guilt to express any negative thoughts whatsoever about LP.

 

[A.B.]

16500 Norwegian kroner for a course. That's about $1900, €1700. She claims to have treated 1000 patients. You do the math. Safe to say that these people are never going to admit any wrongdoing until threatened with legal action.

 

[Sidereal]

Gotta love the level of "evidence" presented in this article. "We asked 9 teenagers how they feel and they told us..."

 

[TiredSam]

Oh give @mango a like - it's not his fault!

 

[A.B.]

Gotta love the level of "evidence" presented in this article. "We asked 9 teenagers how they feel and they told us..."

Pretty much. Also:

Although what triggers CFS/ME in the individual case may vary, it is assumed

"it is assumed" by whom? Some anonymous authority? The scientific community?

that symptoms maintenance and chronification can be attributed to a stress response with elevated state of alertness and persisting activation of the sympathetic nervous system, driven by classic and operant conditioning mechanisms.

Where is the evidence for that? It doesn't exist. No wonder they feel the need to reassure the reader that "it is assumed".

 

[TiredSam]

Gotta love the level of "evidence" presented in this article. "We asked 9 teenagers how they feel and they told us..."

More accurate would be "we told 9 teenagers what they were allowed to say and what they were not allowed to say, and then asked them to say what we told them to say."

This is not an exaggeration, read this:

http://forums.phoenixrising.me/inde...with-the-lightning-process.43609/#post-706996

If anyone says anything she thinks is negative we are interrupted and corrected.
At one point she left the room. It felt very naughty but I whispered to one of the woman sitting next to me ‘how are you, is this working for you?’. She was reluctant to answer, to say anything but that she was doing well would be to go against the process because that is a negative thought. It was pointless asking really.

It's bad enough to con sick adults out of GBP 550 for this, but to enforce it on children?

When I was taking out all the swearwords and tidying up my earlier post on this thread I deleted the phrase "serial child abuser" because I thought it might be a bit much. Just so you know.

 

[TiredSam]

"it is assumed" by whom? Some anonymous authority? The scientific community?.

Passive Verb Syndrome rearing its ugly head again. A common affliction amongst CFS deniers.

that symptoms maintenance and chronification can be attributed to a stress response with elevated state of alertness and persisting activation of the sympathetic nervous system, driven by classic and operant conditioning mechanisms.

Where is the evidence for that? It doesn't exist. No wonder they feel the need to reassure the reader that "it is assumed".

Just borrowing the language of science to give their totally unscientific belief system the appearance of respectability.

 

[deleder2k]

It is possible to comment, but they expect a "scientific tone" with the use of academic references. I've translated, or replaced English with Norwegian in the boxes.

cWFjYzFh.jpeg

 

[worldbackwards]

It is possible to comment, but they expect a "scientific tone" with the use of academic references. I've translated, or replaced English with Norwegian in the boxes.

Can I just say 'bog off' or will it not reach their highly rigorous standards?

 

[Jonathan Edwards]

Can I just say 'bog off' or will it not reach their highly rigorous standards?

Having subjected that bog off to meticulous peer review I think it will do just fine. Rather over the top for a quasi-mini-pseudo-almost-paper of this sort I would say.

 

[jimells]

There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity.

I seem to be having trouble distinguishing reality from fiction - I thought this was a quote from the study!

 

[jimells]

When I was taking out all the swearwords and tidying up my earlier post on this thread I deleted the phrase "serial child abuser" because I thought it might be a bit much. Just so you know.

There is better evidence of serial child abuse than there is for their research conclusions. But who needs evidence as long as there is official support for a pre-determined conclusion?

 

[Asa]

The phrase "landmark stupidity" comes to mind...

Otherwise -- What?! No "customer satisfaction" guarantee? If you're not competely satisfied, a full refund? Money-back guarantee?

Client: "Hei, random LP Practitioner. Your program didn't work for me. I'd like my money back, please."

LP Practitioner: "If I returned your money, I would be reinforcing your negativistic thinking. The only ethical choice is for me to keep your money. It's for your own good."

What about reporting LP CFS claims to a (Norwegian) consumer protection/fraud group/dept.?

 

[Aurator]

I'd be interested to know whether the patients who participated in the present study were paying punters or were able to attend the course free of charge. It strikes me there's always going to be an additional incentive to believe in the efficacy of any psychotropic treatment when you've paid £1500 out of your own pocket for it. It would be interesting to follow a large sample of attendees for a time, divided into paying and non-paying groups, and see whether there is any difference in self-reported outcomes.

 

[Asa]

Bureaucrats might also be inclined to "blame the victim" rather than take personal responsibility for wasting public funds (in socialized healthcare systems).

Also, I noticed that Wikipedia's Lightening Process page is available in two languages only: English and Norsk (bokmål). Both mention UK Advertising Standards Authority (Norwegian equivalent , Forbrukerombudet) and misleading claims. (The English page also mentions SMILE, but I haven't kept up with this to see if the wiki info is up-to-date.)


From wiki Advertising Standards Authority UK:

"These codes stipulate that 'before distributing or submitting a marketing communication for publication, marketers must hold documentary evidence to prove all claims, whether direct or implied, that are capable of objective substantiation' and that 'no marketing communication should mislead, or be likely to mislead, by inaccuracy, ambiguity, exaggeration, omission or otherwise..."

So then, the catch -- as with PACE and such -- is that descriptions of public healthcare services aren't considered marketing? So if the government puts up a page claiming success, then almost nothing can touch it. But if a private company claimed such services, they would be subject to actually proving something worked?

Could patients (safely) set up a CBT/GET co. with PACE claims, and then a coordinated patient group file a complaint with a governement advertising bureau? Then if the ad bureau determines claims to be false/misleading, patients can use that ruling to further protest crapola public healthcare/insurance practices??

 

[deleder2k]

I'd be interested to know whether the patients who participated in the present study were paying punters or were able to attend the course free of charge. It strikes me there's always going to be an additional incentive to believe in the efficacy of any psychotropic treatment when you've paid £1500 out of your own pocket for it. It would be interesting to follow a large sample of attendees for a time, divided into paying and non-paying groups, and see whether there is any difference in self-reported outcomes.

If you referring to the two mini "studies" mentioned in the study they all paid.

The whole point of LP is to tell yourself that you're healthy - not sick. If you don't you won't get better. Of course one would answer in a telephone interview that one thought the course had a positive effect.

The Norwegian ME association did a survey about different treatments. Approximately 8% said they experienced a major improvement after LP, 13% improved, 30% experienced no change, 22% got worse, and 27% got much worse. 166 patients responded.

I find it odd that Live Landmark mentions her own survey (which doesn't even say whether the participants had ME or not) while she ignores the fact that The Norwegian ME association has done a survey on this. She claims that she doesn't know about serious side effects occurring from LP. According to the survey done by the association 49% got worse after the course. Neither of the surveys can be classified as research, but the fact that so many experienced major side effects shouldn't be withheld. I guess one can't expect an author who has personal financial interest in LP to not be extremely biased.

Source of the survey (Norwegian): http://me-foreningen.com/meforening...ke-i-Norge-Fortsatt-bortgjemt-12-mai-2013.pdf