Lightning Process - discussion thread

This reddit post just turned up for me, and I thought I'd post it here:

https://www.reddit.com/user/lord_archimond/comments/mdkfee/lightning_process_summarized/

 

Moved posts

I don't know if this has been previously noted, but, apparently, the "Lightning Process" is now being advertised for Long Covid too.

https://www.youtube.com/watch?v=UUUaAO0sFUA

 

Just putting the youtube transcript of this in a quote box in case it's helpful for searching.

 

You have to admire the youtube translation. It had five opportunities to get "long COVID" correct and it blew every one of them.

"long covered"
"long covert"
"long coving"
"long coved"
"long-covered"

 

the price in the UK is approximately £700-£900
the price in the UK is approximately £700-£900
the price in the UK is approximately £700-£900


https://twitter.com/user/status/1548064232180105219

 

"We “do not endorse the Lightning Process” say World ME Alliance members"
World ME Alliance, was previously IAFME: International Alliance for ME

 

Since this article is largely a promotion of the Lightning Process, this post and subsequent discussion have been moved from the Long Covid in the media thread.

My long Covid: how I finally came back to life
Francesca Steele had given up hope. Then she tried an alternative health treatment

https://www.thetimes.co.uk/article/my-long-covid-how-i-finally-came-back-to-life-z8d6fvlrz

anyone have access to the full article?

 

https://archive.ph/7zC9N

 

She writes -

Er, no. That's not the kind of 'symptom 1ed' pacing ME patients use. Sounds more 1ike the sort of 'activity diary' used under GET.

 

Yep.

 

And again, she states -

So, that wou1d inc1ude the NICE guide1ine committee and the substantia1 evidence review that the 2021 ME/CFS guide1ines are based on.

 

Obviously there will be no objections from the crowd who chastises long haulers for seeking expensive untested treatments abroad. In fact I pretty much expect the usual anger at taking hope away from people if anyone doesn't think this is the greatest thing ever, of which they will see no irony, of course. Even if it's literally a commercial MLM company whose product is not just secret, but requires participants to sign a vow of secrecy and to only speak good of it. Won't bother any of them, they don't know and wouldn't even care if if was highlighted on a document with the company letterhead. Nuance and details don't matter when it comes to chronic illness.

Simple-but-wrong-answers looks like the way it will be for a while. It really seems like they have given up entirely, don't think there's anything left to discover beyond dotting a few i's missing in a few documents. It's pseudoscience all the way down from here.

Did medieval alchemists give up before then? Or did it die out once modern science made it irrelevant? The asymmetry of bullshit is amplified 100x in academic bubbles.

 

I think that here we see the problem of what often happens when 'pacing' becomes medicalised. IMO a lot of the controversy over pacing vs GET could be better understood as 'respect for clinicians' vs 'patient autonomy'.

With articles like this, I think it is also worth thinking about what we do that means instead of simply being viewed as attempting to inform people of potential problems with these approaches so that people can make up their own mind, there's an impression that "a sector of the ME community that lobbies hard against such strategies". To what extent can we work to present our views in a cautious manner that avoids giving that impression, or distances ourselves from those who may be taking a more ideological approach?

There is a lot of uncertainty here, and I can see how forms of 'negative thinking' could be unhelpful in some situations, and how some sort of ritualistic 'positive thinking' could be useful. At the same time, I've seen people who seemed completely sucked into very unreasonably negative thinking about post-viral symptoms go on to quickly and fully recover for no apparent reason, so it's very difficult to say anything on the basis of these sorts of personal stories.

edit:

From what I've seen of these sorts of discussions, that 'must' is unfair, and should be a 'could'. 'Must' would be unreasonable, 'could' seems an important and fair point.

edit 2:

I couldn't see the example of her being trolled after a quick search but it was hard to know what to look for. re being afraid: there are examples of people misrepresenting fair criticism as trolling that would encourage that, but also there are people behaving unpleasantly online and when that's taken as a part of 'ME/CFS advocacy' that's really bad for everyone, and especially patients.

edit 3: I'd guess this was about the incident referred to as trolling: https://twitter.com/user/status/1481276061866471424

 

Looking at some of the comments on line, I feel like twitter is a really unhelpful format.

eg: describing something as 'pseudoscience' without taking the time to carefully explain why just seems like an empty insult that will not persuade anyone and anything. Also, for something like mind-body interventions that can entail a wide range of things (and LP itself seems to be morphing) there will often be elements that can be described as pseudo-scientific, or founded on only very weak evidence, and then elements that are scientifically supported. Any sort of over-confidence or over-simplification will often seem barracking and unreasonable, but twitter seems to encourage short declarative statements.

 

It was probably designed for it - didn't it used to have a 140-160 character limit, like texts (used to, may still do, ain't sent a text in...a long time)?