Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

Utsikt said:
I feel your pain @Covidivici - I’m going through much of the same.

Found this when I googled her name. Sounds like she had a tough experience getting sick for roughly two years (well within the range of self-resolving post-viral fatigue), and I’m happy she’s doing better. Now she’s seemingly committed to spreading toxic positivity and a personal recovery journey narrative far and wide.

The blog was posted feb 2025.


She says’s she’s been feeling amazing for months, but it’s 11 months since she took the course. So she presumably «stopped» having LC when she took the course, but gradually recovered over maybe half a year.

The rest of the blog reads like something out of Paul Garner’s personal notes of «evidence» for brain retraining. This seems to be the depth of her critical reasoning around the whole thing:
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I so feel you both, @Utsikt and @Covidivici

[Edited because I hit Reply accidentally].

A friend of mine told me this weekend that, if I would believe in my doctor and think positively, I would recover. "That's how it works", he said. I told him that that's not how it works and explained why his comment is hurtful (after all, people like my friend are basically saying: If you don't recover, it's your own fault). He then went on to explain why it is his belief that if you believe something strongly enough, it will happen. This was my reply:
**
I don't like that belief, because, as I said, if people don't recover, it sounds like it's their own fault for 'not believing' or 'not being hopeful enough'.

Yes, I know these stories as well, and although I'm of course very happy for these people, I think it's very damaging to those less lucky, to claim that is because of 'their spirit'. You hear it often as well when people recover from cancer "(s)he was so strong and positive, (s)he fought for recovery". As if the people who die from it are not strong and haven't fought! So, that's the other side of the coin.
**

It's so hard to not to just tell people to fuck off and stay friendly!
 
MinIreland said:
I so feel you both, @Utsikt and @Covidivici

[Edited because I hit Reply accidentally].

A friend of mine told me this weekend that, if I would believe in my doctor and think positively, I would recover. "That's how it works", he said. I told him that that's not how it works and explained why his comment is hurtful (after all, people like my friend are basically saying: If you don't recover, it's your own fault). He then went on to explain why it is his belief that if you believe something strongly enough, it will happen. This was my reply:
**
I don't like that belief, because, as I said, if people don't recover, it sounds like it's their own fault for 'not believing' or 'not being hopeful enough'.

Yes, I know these stories as well, and although I'm of course very happy for these people, I think it's very damaging to those less lucky, to claim that is because of 'their spirit'. You hear it often as well when people recover from cancer "(s)he was so strong and positive, (s)he fought for recovery". As if the people who die from it are not strong and haven't fought! So, that's the other side of the coin.
**

It's so hard to not to just tell people to fuck off and stay friendly!
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I’d be looking for something in his life that he wanted but couldn’t achieve and turning it back on him!
 
Some pushback about the very uncritical piece with Gill Deacon:
Although host Ian Hanomansing clarified on air that Deacon doesn’t endorse the brain retraining therapy, the segment still provided national coverage for an unproven therapy. The National failed to mention that there’s no strong evidence CBT, and related brain retraining programs, are effective for Long COVID. The specific brain retraining course Deacon used to recover, according to her Substack, the Lightning Process, has been accused of exploiting people with Long COVID.

At best, this suggests The National did not conduct sufficient background research that would have flagged the problematic nature of the Lightning Process. At worst, the program may have been aware of the concerns surrounding the Lightning Process but chose not to mention it.
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I reached out to the CBC to see if they were aware that Deacon attributed her improvement to the Lightning Process and asked them to comment on their rationale for platforming her recovery story in light of the controversy and lack of scientific evidence surrounding the program.

They were unable to provide a response prior to publication. This article will be updated when a response is received.
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They mostly go off of the BBC coverage of LP for LC that was highly critical of it, with experts calling it an abuse of scientific terms and quackery.

simonspichak.beehiiv.com

CBC’s Flagship Program Platforms “Quackery” for Long COVID

CBC's national broadcast aired an interview with Gill Deacon about her Long COVID recovery. Deacon used an unproven program called the Lightning Process that's been criticized for exploiting patients with chronic illness.
simonspichak.beehiiv.com simonspichak.beehiiv.com
 
Covidivici said:
Happy to see it. I wrote a citation-stacked letter to the CBC Ombud to complain about the interview. Her response:

View attachment 29080
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Hope they take it seriously!

In the link I posted, it says that she doesn’t endorse LP. But she very clearly does endorse LP in her substack and provides lots and lots of links to others talking about it. I have not watched or listened to the segment, so I don’t know what she actually said. But that discrepancy should have been caught by anyone doing any kind of due diligence prior to the interview..
 
She basically said that her metabolism had been stuck in fight or flight and that a three day workshop started her on the road to recovery though she 'had to do a lot of the work on my own'. So, yeah. BRT.
 
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