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

Dr Carrot said:
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.
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At least one member of the board of directors of Action for ME believes the Lightning Process completely cured their ME. Bedridden at times to 100% functioning.
 
Webdog said:
At least one member of the board of directors of Action for ME believes the Lightning Process completely cured their ME. Bedridden at times to 100% functioning.
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My stepsister has 2 friends, both of whom were bedbound ( one for over two years), who both claim to be cured by LP.
Whether the ME diagnosis was correct is one aspect, but both back to working ( one part time ) .
It does seem a bit of a conundrum.
 
A friend of a friend who was bed-bound with 'ME' was completely cured by lying still and thinking about God for a year. Which is a lot cheaper than the Lightning Process.

We need to get the diagnostics sorted out before anything else, otherwise this kind of stuff will always be with us. I'm in no doubt that a fair bit of what gets labelled ME is burnout, acute anxiety, depression and a host of other psych stuff. And those things are serious and should be addressed, and maybe weird shit like the LP can help some of those people (though there's equally 'good' evidence — ie. anecdotal — that it can harm others).

But nothing's going to improve for us until someone gets a handle on diagnosis.

For all I know, I don't have ME. Maybe the LP or thinking about God would cure me, though I have tried some psych stuff with zero improvements. But since my formal diagnosis was a result of a 20-minute interview with a neuro specialist at a CFS Centre who didn't even look at my medical records because her NHS computer wouldn't boot up and who never asked me about PEM, but was happy to say "a classic case of ME", well who the hell knows?
 
Amw66 said:
My stepsister has 2 friends, both of whom were bedbound ( one for over two years), who both claim to be cured by LP.
Whether the ME diagnosis was correct is one aspect, but both back to working ( one part time ) .
It does seem a bit of a conundrum.
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I have to ask — if they were bed-bound, how did they do the Lightning Process? It's very intensive, runs all day for a number of days.
 
You only need a couple of percent of patients to have a problem that could be resolved by LP and you will get thousands of positive anecdotes. Add in another few percent who would have improved anyway.... I don't see much that needs to be explained here.
 
In a way, Parker publishing in what is so obviously a quack journal is to our advantage. I can't see NICE taking seriously a paper published in a journal that boasts, among other mumbo jumbo:
It also promotes up-to-date research in the clinical and extra-clinical field, in the recovery and prevention of psychic and psycho-somatic dysfunctions and disorders. In addition to these, the journal supports psycho-social integration and adjustment, the harmonization and stir of the collective evolution process.
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strategist said:
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.
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One LP coach in my country compares the course to a diet. It can take time to achieve results, but you can't expect changes if you you're not willing to put in the effort. So if a CPET didn't show any changes, obviously it would be because the patient hasn't given the effort.

In Norway, an LP-class costs 16 500 NOK (2 000 USD, 1 500 GPB). This is to "boost" the patient's motivation for a successful outcome. That someone has become a multi millionaire on LP coaching is just a happy coincidence, I guess.

Clients are also screened before they are considered "ready" to participate (in other words, they didn't ask too many questions).

But Parker seems to have forgotten to mention this in his article?

I've read and heard numerous accounts of ME-patients deteriorate after undergoing this "treatment", but the argumentation I've seen for this is either that the patients are just "disappointed" that it didn't work for them (didn't put in the effort, in other words), or that a deterioration is a proof that LP does have an effect. :confused:
 
Trish said:
In a way, Parker publishing in what is so obviously a quack journal is to our advantage. I can't see NICE taking seriously a paper published in a journal that boasts, among other mumbo jumbo[...]
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If no other question, I would ask myself why a Brit was submitting to a Romanian journal.

Eta:

Phil Parker, DO*i, Jacqui Aston, BSc (Hons)**, Fiona Finch, MSc DipCOT***
*School of Psychology, London Metropolitan University, UK, **London, UK, ***Bath, UK
 
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strategist said:
The test reveals how much effort the patient put in.
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This LP coach I am talking about is accusing ME patients for just lying around waiting for a pill instead of taking matters into our own hands.

This kind of argumentation and patient blaming has caused enormous damage and made our voices easy to dismiss. Apparently it's more convenient for health care personell to listen to the coach with the answers. Those of us who are critical to undocumented, alternative methods are blamed for being so comfy in our sickness role that we consider patients who have improved with LP as a threat.

It's quite aggressive argumentation.

ETA: a couple of years ago this coach was prevented to give a lecture about LP for employees at Norwegian Labour and Welfare Service because patients objected against undocumented alternative methods being promoted there. This was accused fiercely as a violation against the coach's freedom of speech, just so we know who's the real victim in this debate.
 
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Trish said:
In a way, Parker publishing in what is so obviously a quack journal is to our advantage. I can't see NICE taking seriously a paper published in a journal that boasts, among other mumbo jumbo:
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But, NICE did take seriously the idea that thinking yourself well and exercising is a cure for ME/CFS, so much so that it did shape NICE's treatment guidelines for this disease. That hogwash was published in a journal considered (at least, in years past) reputable. Can any mainstream medical journal even be trusted to publish good science anymore? Would NICE trust that quacky journal any less than it trusts The Lancet? I would hope so, but who knows. It's worrying.
 
EzzieD said:
But, NICE did take seriously the idea that thinking yourself well and exercising is a cure for ME/CFS, so much so that it did shape NICE's treatment guidelines for this disease. That hogwash was published in a journal considered (at least, in years past) reputable. Can any mainstream medical journal even be trusted to publish good science anymore? Would NICE trust that quacky journal any less than it trusts The Lancet? I would hope so, but who knows. It's worrying.
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Yep, in recent times the NHS has shown itself willing to outsource 'therapies' to some pretty whacky organisations. Parker and the LP have been angling for a slice of that pie for some time and may well succeed.
 
I have hacked my way though this turgid nonsense. It is quite extraordinarily awful.

It reminds me of two things: one is an explanation of acupuncture I once read; the other is the film Europa Europa (1990) and the explanation for racial superiority. Have a false idea and then build a complex false explanation for it.

It does show how 'physical' and 'physiological' have been hijacked. It's why I prefer 'biological' or 'pathological'.

It refers to study by @Jonathan Edwards and others on the biological challenge.

I think Parker believes every word. There are plenty who are devout believers in 'positive thinking' and this isn't very different.

Crawley's gift that keeps on giving.

It has been used by those seeking help with a range of issues, including Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), an illness
defined as a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, particularly the nervous and immune systems. Early reports of complete recovery from many and an absence of results from others (ME association, 2010) resulted in a lack of clarity about its value in a field already prone to misinformation and strong debates. Further research has developed an evidence base, with an RCT finding the approach, when combined with specialist medical care, increases positive outcomes for some groups with CFS/ME, compared to specialist medical care alone (Crawley et al., 2017), a smaller study identifying positive outcomes for pain (Hagelsteen & Moen Reiten, 2015) and two studies reporting on patient experiences (Reme, Archer, & Chalder, 2013; Sandaunet & Salamonsen, 2012).
 
Kalliope said:
This LP coach I am talking about is accusing ME patients for just lying around waiting for a pill instead of taking matters into our own hands.

This kind of argumentation and patient blaming has caused enormous damage and made our voices easy to dismiss. Apparently it's more convenient for health care personell to listen to the coach with the answers. Those of us who are critical to undocumented, alternative methods are blamed for being so comfy in our sickness role that we consider patients who have improved with LP as a threat.

It's quite aggressive argumentation.

ETA: a couple of years ago this coach was prevented to give a lecture about LP for employees at Norwegian Labour and Welfare Service because patients objected against undocumented alternative methods being promoted there. This was accused fiercely as a violation against the coach's freedom of speech, just so we know who's the real victim in this debate.
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If you have some documented quotes to share that might prove useful.
 
From the paper:

"The standard models employed are pacing,
CBT and GET. These models primarily advocate gradual change through small step, incremental usage and the physiological effects of exercise (Cox, Ludlam, Mason, Wagner, & Sharpe, 2004). The CBT elements often add coping strategies for managing the illness and an identification of where cognitive appraisals of lack of ability are at odds with actual ability. Instead, the LP employs a pacing approach to recovery, combined with a neurological model for influencing physiological change and increasing exercise tolerance."

From An Introduction to the Lightning Process: The First Steps to Getting Well, Phil Parker (2012)
ISBN10: 178180057X:

"So, although CFS/ME is a physical condition, physical cures like osteopathy, nutrition, pacing and rest are sometimes helpful to some degree, but they are simply not very effective in producing rapid, effective and lasting recovery. Therefore, if what you are doing is ineffective, it’s time to try something else. As Sherlock Holmes suggested: ‘When you have eliminated the impossible, whatever remains, however improbable, must be the truth’."
 
Holmes was applying that logic to human actions not human biology. There's a difference.
Biology is still little understood but it does not act irrationally.

Pseudo-science always takes sciency sounding words and uses them to over-simplify something that isn't and to mean something more than is reasonable. It cannot immediately be refuted because it deals in the unknown. It ruins people to real science where they have to dig deeper.
 
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