Lightning Process - discussion thread

I was viewing the MEAction page on Lightning Process
https://mepedia.org/wiki/Lightning_Process#:~:text=Harms%2C%20risks%20and%20side%20effectsedit%20edit%20source,training%20course%2C%20not%20a%20treatment.

And followed on of the links to anecdotal stories from people who did the course and DID NOT recover. Sharing it here in case it is of use for future reference. The posts are not dated.
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

 

There are some stories at lp-fortelling.no as well, although I believe it has already been posted.

https://lp-fortellinger.no/en/lp-stories/

 

BBC Con or Cure - Long COVID The Lightning Process
BBC news segment on LP (9:25) uploaded by Broken Battery on youtube:

https://www.youtube.com/watch?v=pRBab2lOwwc

I have not watched it yet.

 

Its negative against the lightning process but its more "this doesn't make sense based on what we know about Long Covid" and not "this is outright quackery and exploitation".

Where I am meh is the idea that a third recover and the other 2/3s should be "supported patients in their recovery". I don't think that high of a recovery rate is remotely supportable yet by anything but some truly awful studies that should not be used and the wider set of studies certainly don't suggest its that high like RECOVER. The idea patients should be supported with treatments brings up some questions about what treatments exactly they are referring to and the only thing they say is therapy for fatigue.

Talks a bit about the various fads too that have occurred on antihistamines, HBOT and apheresis but patients aren't asking for those. Since all patients are being offered is therapy why would they be asking for their blood to filtered since the NHS doesn't offer it or oxygen therapy that the NHS also doesn't provide or antihistamines they can buy in the pharmacy?!

A lot of what is said by the doctor is based on bad papers from the UK and not a lot from some of the better international papers.

 

Merged thread

A doctor’s experience of the Lightning Process for Long Covid

On Phil Parkers Lightning process website.
Conveniently anonymous.

A medical doctor: my experience of using the Lightning Process - The Lightning Process (LP)

 

If the symptoms always had a rapid onset, it doesn’t fit with the classic PEM pattern of delayed symptoms.

«New and helpful». Sure. It’s only been around for a couple of decades and there has been not a single shred of solid evidence, and a whole host of stories of serious harm. Should we take those seriously as well?

 

Oh wow what a great guy, totally reasonable and not at all carefully crafted.

 

He’d been reading Garner’s recovery and it made sense, but he didn’t want to risk losing his stability. Then he fell victim to an “unexplained” crash so he decided to give it a go. None of that actually sounds like an unbiased account, please try harder to pretend you’re not a bot.

 

Moved posts

I agree, it’s seriously concerning that piece has been published. I read it was actually commissioned by the BMJ so I wonder who commissioned it?

In just googling the paper I saw it was being shared on a physio site as a way to treat severe ME patients (link here) so the ripple is already in effect.

Im also struck by Garner’s unashamed allegiance to the Lightning Process and how many key BPS proponents are involved with it.

For instance, there was the paper I’m sure everyone’s aware of called Chronic fatigue syndromes: real illnesses that people can recover from by ‘The Oslo Chronic Fatigue Consortium’ (link here) that David Tuller wrote about here. The 46-strong author list is an ME horror show with Garner, Chalder, Sharpe and Fink signing on to this ‘consortium’. (Chalder and Crawley of course used the LP in the study Tuller rightly exposed as seriously flawed – link here). In the context of Garner’s BMJ abomination it’s notable that Maria Pedersen is in the consortium too since she’s a co-author of Garner’s BMJ article. Also present in the consortium are Vogt and Landmark – influential and publicly known LP proponents. And they’re just the names I recognise, goodness knows what the beliefs and backgrounds are of the rest.

Garner and Vogt also wrote a paper together called 'Long covid' and how medical information is causing illness: A philosophical issue affecting public health (link here). Ex-BMJ editor Richard Smith wrote sympathetically about it noting that Garner was a friend of his. Smith also writes sympathetically about Suzanne Sullivan’s notorious book in the same article (link here).

It’s starting to feel quite insidious – especially if you peruse the ‘Recovery Norway’ site’s recovery stories (link here – note that there are different stories on the Norwegian version, ‘Recovery Norge’, that aren’t on the English one). Vogt used to be head of RN (don’t remember his title) and is still heavily involved. The site seems to be a marketing vehicle for LP propaganda. On the site there are recovery stories from loads of people, many of which are specifically tagged with LP. To me it looks suspiciously like the people featured on the site (whether tagged LP or not) have either been students or practitioners of the LP.

Some notable people featured on the site are:

• Paul Garner (no further comment needed!)

• Jan Rothney (aka Jan Oakney) who used to teach the LP and has rebranded herself without mentioning the LP (though her old site is still visible on waybackmachine.com) and launched a book that helps people recover from ME with similar ‘you can think yourself better’ philosophies.

• David Jameson who many attribute accounts on Twitter and Bluesky to and who’s been a relentless botherer of the ME community on both platforms for years. The same account also links to articles on Medium, one of which supports the original PACE trial results. David Jameson is supposedly the mod/overlord of one or two Reddit ME groups – people seem to feel there’s not much room for debate and I’ve seen suggestions he makes fake accounts to further push his views on there. He’s also published his theories of CFS and burnout (link here), which I noted in another s4me thread yesterday are being recommended to patients of an NHS GP surgery in Scotland (the surgery also refers to Fibro, IBS and CFS as functional disorders).

• Raelan Agle the prolific vlogger that I’m sure everyone’s heard of who has a high profile recovery story with 50K YouTube subscribers. She features LP proponents including Phil Parker himself on her show – in fact a lot of LP alum seem to promote their fellow LP’ers.

• Dan Neuffer, again I’m sure people are well aware of him too given he’s also got 50K+ YouTube subscribers and does high profile appearances and writes books etc on recovering from CFS (sorry to keep using the term – their words not mine).

• Tina Røe Skaar – Olympic taekwondo athlete
… (I wonder if athletes are a particular target for the LP given Oonagh Cousins publicly outed them – link here)

The level of LP influence is worrying to me, not just because it encourages people to think that ME is psychological but because of the highly influential positions it’s proponents are in and how closely it aligns with BPS ideology so it’s so easy for it’s rubbish to spread instead of the real science to be acknowledged. In those crucial first months and years of getting ill, going down the wrong path in an attempt to get well is dangerous as we know, and if you don’t know the history and you’re just starting out researching your illness you’ll likely find a load of old tosh from vloggers pushing snake oil comes up on YouTube and other platforms first given LP proponents have 50K subscribers.

Anyone else feel concerned by all this or have more to add?

Id be interested to understand how they’re funded and what the hierarchy and structure of the organisation is because it very much seems like a cult-like pyramid scheme to me.

Mods – sorry this has become more about the LP than Paul Garner so feel free to move it if needed! (And thanks for all you do!)

 

'Recovery Norway is a Lightning Process organization'
14. mai 2022 · by melivet

https://melivet.com/2022/05/14/recovery-norway-is-a-lightning-process-organization/

.

 

I hate that these rabbit holes just get worse… how on earth has it ended up that pwME now also have to fight what appears to be a highly organised cult

Good idea!

 

Gestures generally

It's, uh, kind of a thing with humans. Especially lately.

 

One thing that has stricken me: The positive LP testimonials seem to always sound very generic and non-specific about what it is in LP that actually help and what they did in the course. No details are given. They focus on how bad they felt before and how good LP made them feel. It make them sound line non-sincere advertisement.

The negative testimonials on M.E. Support-Norfolk and LP-fortellinger actually gives to information and details about the LP course. They sound much more honest.

PS: I love the M.E. Support-Norfolk page. It's the old form of webpage. From the before-times, before it all went too far and derailed.

 

Ha, yes it is…