Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

Those quotes were from memory, but I'll see what I can dig up.

I'll just edit this post when I find new things that might be of interest, so the thread doesn't get too much distorted..

Here is a letter from last year to the editor by LP coach Live Landmark after prof. Wyller's application for an LP trial was turned down by the Research Council of Norway. The Council had invited ME patients to give input on what kind of research projects into ME that are of most interest for users. They got over 700 responses and two patient organisations were invited in a panel to sort through the responses and summarise the patient's wishes. The final decision on which projects would receive allocations, belonged to the council, but in Live Landmark's version the ME Association had much more power.

Ideologi styrer forskning
google translation Ideology governs research
The ME association is open to the fact that it is an ideological organization with a biomedical point of view. The association is said to wish for a medical treatment and not a psychological approach. They want a pill and not any other kind of help.These are those who are representatives in the user panel.

Here is an appeal written by Live Landmark, some psychologists and doctors and Per Magnus; the science director at the Norwegian Institute of Public Health (sic).
Chronic fatigue syndrome and experience with the Lightning Process
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.

oh, I had forgotten this one. Not only are we envious and feel threatened from patients recovering, we also forestall's people's recovery by insisting this is a chronic disease.
We have got ME associations, municipal ME coordinators, ME managers at upper secondary schools, ME policlinics in hospitals and a Health Directorate which emphasizes that there is no cure.
This is very problematic because the diagnosis creates ideas about invincible danger and helplessness. When young people are told that they have a serious chronic disease there is no cure for it, it can be a self-fulfilling prophecy.
google translation Norway has an ME epidemic

Today, I know better. Now I know that Pace trial, the biggest study on ME ever, did not find any improvement in patients when they "saved their energy". A follow-up study, on the other hand, concluded that ME could be completely recovered. Cognitive behavioral therapy and customized training provided the greatest likelihood of rehabilitation.
In retrospect, this study, along with subsequent positive effects studies, was criticized for having "wrong" diagnostic criteria. The assertion is that the studies included people who may have been mentally tired and not "physically" ME based on "correct" diagnostic criteria.
...
A key point is that these therapies depend on the patient's motivation and active involvement. The impact of the ME community, and outpouring from their supporters, can be a negative effect in patients already in treatment. It can also cause patients to fail or wait to seek out the kind of help, as I did for several years. They do not have time for it.
From ME-samfunnet kan skade pasientene (not able to google translate it)

And of course the parents are to blame too:
More children can get well if the parents manage to turn their attention from the children's symptoms to their own fear and despair.
ME-mødrene trenger hjelp (The ME-mothers need help).

ETA: Can't find a quote about NOT speaking for health personell about LP is a violation against freedom of speech, but here is the editor of the Journal of the Norwegian Medical Association supporting the coach and warning against patients having too much to say.
On wild roads
In connection with the education, a seminar was scheduled for 14 April 2016 aimed at therapists. The theme was the discussion of the Lightning Process workout program, with Live Landmark as a starting point, followed by professional discussion about the program. The patient organization Norway's ME association didn't like this. As consequence, RBUP was forced to cancel the event two days before it should have been held.
Patient involvement is important - in all parts of the healthcare system. However, that strong patient organizations are allowed to gag a scientific debate by deciding which discussions a public trade and research forum is allowed to lead is not patient involvement. That is unacceptable. No patients are served as professionals do not dare to debate freely in their own forums.

ETA:
Here is an example of how LP is presented as documented treatment:
Three scientific studies have been conducted on LP, two of which are published in international journal. A study looked at the experience of young people with CFS / ME . Seven out of nine youth experienced a physical and mental recovery after LP, one had no effect, and one felt guilty of failing to succeed and therefore felt worse.

Another study found that those who benefit from LP get an aha experience on the course, they manage to use the methods and they have a trust relationship with the instructor. Those who do not benefit from LP have not experienced this.

The latest study is a randomized controlled study , the very gold standard in research. Hundreds of youths with CFS / ME participated. One group received standard treatment, the other received standard treatment plus LP.The group who participated in LP had a significant improvement. The study showed no serious side effects.
Study showed no serious side effects after the Lightning Process

A letter to the editor of a Swedish newspaper warning the health care system to accommodate ME patients.
Unfortunately, some doctors, patient associations and politicians help create anxiety and illicit a large proportion of the population to the extent that young people are isolated in dark rooms for years. The insulation is said to be needed to protect them from any impression that increases their symptoms, because there is no "cure".
...
Researchers in Denmark who examined corresponding patients have launched the term "Bodily Distress Syndrome," as a description when the body says. If the body is in a chronic physical state, the brain perceives different bodily signals unusually, and patients experience worse symptoms.
...
An attitude to ME symptoms that underscores helplessness not only affects patients and relatives but also healthcare professionals. Ideas are contagious and affect how we interpret what we see.
ME-epidemin är på väg til Sverige
google translation: The ME epidemic is on its way to Sweden

Another letter to the editor from the coach. This is quite recent:
There are several studies that show that cognitive therapy and graded exercise have a significant positive effect on ME. The studies show no serious side effects. All of this is reflected in summaries from Cochrane and the National Knowledge Center for the Health Services , but still faces resistance from both patient association and some ME patients.
...
It is a shame that scientific studies on cognitive therapy and graduate training are ignored by some patients and their patient association. The causes appear to be the claims of deterioration, but this lacks scientific documentation. The consequence is that ME patients miss better health in an ongoing pursuit of a medical cure.
ME-pasienter fortjener dokumentert behandling
google translation: ME patients deserve documented treatment

 

But also I think the take-home is that nothing about LP has ever sounded like pacing. Rather, it's the antithesis of pacing, and Parker has put in print that pacing is "simply not very effective in producing rapid, effective and lasting recovery". So to suggest now that LP is part pacing certainly seems like positioning in anticipation of the NICE review as observed above for the publication timing.

 

That doesn't rhyme.

 

Indeed the 'literature review' seems to consist of scanning pubmed for reviews and picking one by contributors here and attributing to it a lot of stuff it did not say. After mention of such stuff our paper says that frustratingly none of this stuff has been validated.

 

I one ever has doubts about being sceptical about the integrity and competence of professors with medical degrees in the BPS crowd one only has to look see who they publish with and what their friends publish. I worded it like that because I think professors of psychotherapy should best be regarded as friends.

 

Even being mild ..I can’t do longer than 30 minutes with a group of people?

 

I suspect that statistically there will be a subset of people who maybe are misdiagnosed with ME/CFS, when in fact they have CF ... possibly also deconditioning being a contributor to that. (I mean, what are the odds there will not be some folks in that category?). But because nobody knows (and many don't seem to care) that it's impossible to know who will and will not be harmed by excessive exertion, many people are vary wary of it ... those who would be harmed and those who would not, but no one knowing who is who. For those who take the chance, some may get better, but it is a Russian roulette thing.

 

https://twitter.com/user/status/1014091974851420160

 

Okay, I have an admission to make in order to hopefully shed light on why some people recover from the lightning process.
It can be done.
I (partially) recovered via changing my internal cognitions and gradually increasing exercise.
Yes, it just so happens that my getting better occurred at the same time I stopped being constantly terrified and began steadily increasing my activity levels. Coincidence? I should scarcely think so.
Now, I am so incredibly mentally powerful (IQ>9000) that I did not need formal lightning process or GET. However, mere cowering mortals...

 

Thanks @Kalliope for the lengthy response.

Also, as to @FreeSarah 's comment the PP comment in question comes from here:

https://bit.ly/2KTJNvN

ETA: I think it's important for us to stay aware of what these BPS people are up to and to have a record of what they say &shorten URL

 

It rhymes with Live Landmaaaaaaaaaaagh

 

It all makes much more sense in the original Romanian, I'm sure. It's just a bad translation!

 

Yes, this point is very important. LP is absolutely the total opposite of pacing, ref the brainwashing “STOP”, the harmful PUSH TROUGH to LIVE THE LIFE YOU LOVE. Ooh, lord.. The STOP-paradigm is exactly why it is dangerous and often harm ME-patients (defined and meaning PEM-patients). I haven’t read the paper (yet), but if Parker is claiming LP to be part pacing, this is really bad and must be challenged and confronted very strongly.

 

Yes, that was my query too. I don' t know if this person accessed after some improvement ( and assigned further improvement as due to LP)
A lot of reports are contrary to the experience of ME, though there are others which are not simply explained .

 

We have seen how this personality type plays out before ...

 

Can someone tweet link to Coyne?

 

[Saved this one]

 

I wonder if he is aware that EC' s LP paper is under consideration by NICE ..