LP coach on research, Lightning Process and ME (Norway)

Kalliope

Kalliope

Senior Member (Voting Rights)
This is so dreadful I don't even know where to start in order to give a recap. :cry::cry::arghh:
Lightning Process (LP) coach Live Landmark has written a letter to the editor defending LP as treatment for ME.

Dette sier forskningen om Lightning Process og ME
google translation: This is what research says about Lightning Process and ME

The management of the National Competence Service for CFS/ME has spoken positive about Lightning Process . This has displeased some people.

A small group of patients can't handle the thought of psychology connected to CFS/ME. The problem is that they make the big patient group a disservice, as shown in a research article from 2014 . The fear of a psychological approach may be due to the fact that some unfortunately have been misbelieved when they have told about their symptoms, as the newspaper The Telegraph has written about. However, it may also be a fallacy that bodily symptoms doesn't affect mental mechanisms and vice versa.
 
Didn't Phil Parker just release a sales video about LP where he stated that ME is a physiological disease without a doubt (but obviously LP can still help). Shouldn't they agree amongst themselves what it is they are "treating"?
 
They don't give a shit so long as they can get you to pay lots of money to do their course. They'll say anything.

My stomach twists just by reading that Landmark is at it again. Hope someone will have the energy to point out flaws in the "research" she's quoting.
 
andypants said:
My stomach twists just by reading that Landmark is at it again. Hope someone will have the energy to point out flaws in the "research" she's quoting.
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I wouldn't even know where to start, and as she uses the opportunity to smear ME patients, no one would listen anyway. This nonsense needs to be met from a level up by doctors and researchers. But the national competence service for CFS/ME would probably just agree with the coach :bawling:

Or is she finally reaching a point in her argument where not even the national competence service can stand by her?

Here are some examples from her text:
- ME is a self reported, subjective condition
- there is little documentation that ME patients are doing less than others. They are for instance ten times more active than others online
- no negative experience with LP reported
- Not everyone are capable of taking responsibility for they own health. The pressure can trigger stress and worries, which can lead to symptoms. Should a few persons lack of effect stand in the way for the majority's possibility for recovery?
 
Oh goodness, whoever wrote that letter must have horribly overvalued the importance of the small amount of ME sufferers who are into this physical/psychical debate in general. It is true that those people who even engage in that part of the debate do the bigger community a disservice because it draws attention to a strawmandebate that is of little importance.

What many more patients are opposed to (as far as I can tell) is psychological/physical violence against sick people in general, and especially if it displaces actually helpful stuff and costs a lot of money. This letter reads as if someone who was caught holding a bloody knive standing over some mutilated body parts tried to make the argument that some people apparently are not big fans of accupuncture. Sure, maybe that is technically true, but given the situation also kind of missing the point.
 
This is Landmark's rebuttal of our desire for objective measures for unblinded treatments:

4. The studies measure only subjective goals, but they must have objective goals
CFS / ME is a self-reported subjective condition, and it is natural to have subjective outcomes. It is difficult with objective goals, such as activity, because there is little evidence that ME patients do less than others. For example, they have ten times as high activity on the internet as others, according to an international published study.
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:rofl::banghead:

I hadn't realised that 'activity' could be interpreted so broadly. So lying in bed listening to live streamed radio seems to be essentially equivalent to jogging. Perhaps breathing counts too?
 
"little evidence that ME patients do less than others"
seriously?

"they have ten times as high activity on the internet as others"

who are these others? presumably not people who are stuck at home with chronic illnesses.

eta: ah found it:
"Individuals suffering from CFS / ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions. CFS / ME online forums had more than ten times the relative activity of any other disorder or condition-related forum."

so not people with say RA, or MS.

eta2: quote is from the 'published research' mentioned in article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/
 
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Kalliope said:
Or is she finally reaching a point in her argument where not even the national competence service can stand by her?

Here are some examples from her text:
- ME is a self reported, subjective condition
- there is little documentation that ME patients are doing less than others. They are for instance ten times more active than others online
- no negative experience with LP reported
- Not everyone are capable of taking responsibility for they own health. The pressure can trigger stress and worries, which can lead to symptoms. Should a few persons lack of effect stand in the way for the majority's possibility for recovery?
Click to expand...

:rofl: I'm literally laughing at this, this is so stupid. She is digging her own grave. Thanks Kalliope, I couldn't bring myself to read the full article.
 
Apart from that...
Hutan said:
So lying in bed listening to live streamed radio seems to be essentially equivalent to jogging. Perhaps breathing counts too?
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...this...
Sly Saint said:
"Individuals suffering from CFS / ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions. CFS / ME online forums had more than ten times the relative activity of any other disorder or condition-related forum."
Click to expand...

....doesn't say anything but how unlogical Landmark's reasoning is. It is not known who these people are that are active on the forums (sufferers? familiy? carers?) and it is not known what "activity” means (liking a comment?) nor how many pwME are not even able to be active on the internet in any way or have active and passive phases alternately.
:emoji_angry:

Edit:It could also mean that ME online forums have more to offer than other forums and simply are better :angel:

Edit 2: Just to be accurate: @inox checked how online activity was "measured":
https://www.s4me.info/threads/lp-coach-on-research-lightning-process-and-me-norway.5917/#post-107784
They counted posts and calculated the „number of weekly posted messages per 1,000 cases“. So whenever a smiley, a link, or a thank you was posted, regardless by whom, this seems to have been counted as a post.
 
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- there is little documentation that ME patients are doing less than others. They are for instance ten times more active than others online.
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This is like saying that there's little documentation that the blind are visually impaired. After all, studies show that their TV's are on more often than those of sighted people!
 
This is what we have been up against, for two decades now....? It's really hard to explaine the impact Landmark has had on the opinion about ME i Norway, and even distorted healthcare workers and doctors. People actually belive LP can cure or help ME-patients over here, because that is the message she has hammered in at every oportunity she gets. Even my current GP, that I adore and we're working great togheter, has suggested LP to me - not really knowing what it was.

And it's been really, really hard to counter these articles, because she is so good at twisting words and reaserch to her own liking, playing at pre-judices etc. It's been terribly hostile enviroment, to try and do any information and advocating work.


Sly Saint said:
"little evidence that ME patients do less than others"
seriously?

"they have ten times as high activity on the internet as others"

who are these others? presumably not people who are stuck at home with chronic illnesses.

eta: ah found it:
"Individuals suffering from CFS / ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions. CFS / ME online forums had more than ten times the relative activity of any other disorder or condition-related forum."

so not people with say RA, or MS.

eta2: quote is from the 'published research' mentioned in article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/
Click to expand...


This is a great example of how she misrepresents and twist things.

That study used data from a decade ago - 2009. At that time, online forums was the main source of information for ME-patients in Norway. There were no services, and only a few doctors could make a diagnosis. It's no wonder the ME-forums had higher traffic - there was no were else to turn to.

They never measured how much time patients used online - as she likes to "tell the story".

It's not even true an ME-forum was the most active postings - it was a forum for pain patients:

Twelve online discussion forums were found. The CFS/ME forum, Me-forum, had the highest number of registered users per 1,000 cases (50.5) followed by the second forum for CFS/ME, MENIN (29.7) and then a forum for drug and alcohol dependency, Narkoman (5.4) (Table 1). The highest activity levels, in terms of number of posted messages during a one week period, were found for Sunshine (chronic pain) (N = 799), Me-forum (N = 534) (CFS/ME) and Stille-vann (mental disorders) (N = 253) (Table 1). However, the forum with the highest number of weekly posted messages per 1,000 cases was Me-forum (11.1), followed by Sunshine (0.8) and FFB (breast cancer) (0.4) (Table 1).
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Kalliope said:
Dette sier forskningen om Lightning Process og ME
google translation: This is what research says about Lightning Process and ME

The management of the National Competence Service for CFS/ME has spoken positive about Lightning Process . This has displeased some people.

A small group of patients can't handle the thought of psychology connected to CFS/ME. The problem is that they make the big patient group a disservice, as shown in a research article from 2014 . The fear of a psychological approach may be due to the fact that some unfortunately have been misbelieved when they have told about their symptoms, as the newspaper The Telegraph has written about. However, it may also be a fallacy that bodily symptoms doesn't affect mental mechanisms and vice versa.
Click to expand...

This is such nonsense. Its down to the person making the claim to prove with evidence that a given treatment works. LP has never done so. How body and mind affect each other is irrelevant therefore until they themselves have some bloody proof of such.

Its got fuck all to do with the fear of a given approach. Its simply their given approach has been proven to be quackery.

They could apply their logic to any claim like teapots floating in space cure ME and teapots, the mind and the body are connected. One just has to believe and not be negative about the power of floating teapots. Once its obvious that magical teapots is a pyramid selling snake oil treatment then they just go on to straw man the argument and claim that people are anti teapots.

How about demonic possession, or any other such nonsense are we just anti that too hampering our own chances of recover?
 
Kalliope said:
Didn't Phil Parker just release a sales video about LP where he stated that ME is a physiological disease without a doubt (but obviously LP can still help). Shouldn't they agree amongst themselves what it is they are "treating"?
Click to expand...

The problem is that they do not actually know what they mean by these words. They think the words must mean something and when they all say them together they convince each other of it, but they don't. Stupid people will go on behaving like this forever. And as we can see from the election of orange haired presidents stupid people are numerous.

But I have a strong feeling that LP is not going to get any more academic plugging in the UK.
 
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