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

"An evaluation of the LP’s conceptualisation of the aetiology of the disease and the hypothesis behind its approach was undertaken, through a review of the literature and semi-structured interviews with the programme’s original researcher (this paper’s lead author)."

I thought about what I think by reading what I've written and possibly talking to myself.

 

The first thing I looked for was any declaration of conflict of interest......I am still looking.

 

I still can't work out whether Phil Parker is an idiot, or someone who has just created a persona designed to appeal to, and manipulate, idiots.

 

All those words and so little actual information!

 

Its much, much worse than manipulating idiots. It is manipulating the desperate and vulnerable. …..or were you referring to Esther Crawley?

 

Oh good grief. There's so much wrong with that extract that it's impossible to know where to begin. I guess one thing I can pick to say is: what 'evidence base'?

Also, I think he uses a lot of big words but doesn't really know what they mean.

 

He's making some wild claims:

- That LP training allows people to "develop an awareness of which neurological pathways they are activating" and whether they are healthy or unhealthy.
- That "cognitive, linguistic, embodied cognition and gentle movement techniques" can be used to interrupt those pathways.
- That "structured and detailed re-vivification of appropriate reference desired states/memories" "activate new pathways that encourage improved physiology and restoration of homeostasis."
- That LP can change the physiological response to exercise in ME/CFS.

And probably a few others. He cites a few articles in support. I spotted the familiar names Selye, Langer, Carlson in the references. I'm too tired to go through them but very much doubt that any of them really support his claims.

Importantly, I did not see any reference to an experiment that shows LP change change physiology in any (meaningful) way.

The abnormal response to exertion in ME/CFS is objectively measurable. He risks having his claims actually tested and falsified.

 

This isn’t strictly related but as we’re discussing the validity of the lightning process I thought I’d contribute this thought.

There are lots of people who say they’ve benefited, even been cured by the lightning process. I know of two myself, both of whom are fit and well, and working full time. What are we to make of this? I know that they don’t have the same illness as me (whatever my illness is anyway), but they were clearly ill and are now well.

The only reason I’m so interested in this, is if diagnosis / testing wasn’t such a mess my hunch is that these people would be put into a different pile from people with my specific presentation of symptoms.

 

Not much, without knowing any details. It's possible that they would be well and working even without LP.

 

@Dr Carrot did they convincingly improve exactly at the time of LP? There’s two confusing aspects: genuine/classic ME can fluctuate wildly and sometimes this might coincide with having done something (coincidentally) specific AND once someone has done LP you can no longer trust anything they say about how they’re feeling. If you have severe ME you obviously can’t fake being active but if you have mild ME this might be possible.

Edit: worried I sounded too dismissive of people’s experience. I mean that once you accept a protocol which tells you not to tell other people you feel unwell, if people know that’s what you follow they will stop trusting your words as the means to tell how you are doing (because you say you’re doing well regardless of how you actually feel). It is a step beyond placebo and more into cult territory.

 

Yeah in both cases they worked as marketed, I.e. a lightning cure. I just don’t know what to make of it...can you have ME-like symptoms that can be corrected by some sort of psychological process? The reason I bring it up is that as long as these genuine stories exist the waters will continue to be muddied regarding diagnosis and treatment.

Edit: I’m sorry for taking this thread off track a bit - please keep discussing the paper.

 

As far as I know there is a long history of claims that psychological factors can meaningfully affect disease processes but it always turns out to be nonsense.

If LP can cure people in three days, it would be easy to prove that it works in ME/CFS by first demonstrating presence of PEM in patients via 2 day CPET, having them do LP, and then demonstrating improvement/absence of PEM.

 

Just as NICE are looking at guidelines. ECs paper and this ... timing is everything.

 

http://jep.ro/en/

http://jep.ro/en/to-authors/reviewing-the-articles

 

so....no.....and they want everyone to be fully aware that they are not.