Facebookpage: True Stories About Lightning Process (Critical)

Kalliope

Kalliope

Senior Member (Voting Rights)
A facebookpage has just been created called True Stories About Lightning Process
This is a place where ME-patients can share the other side of LP, what turned out to be the grim reality for many.
Have an experience with LP you think others should know about? Here is a platform where you can share it.

ABOUT-INFO FROM THE PAGE:

This is a collection of self reported true stories by ME/CFS patients who have experienced the Lightning Process. Please share these stories widely to raise awareness and protect others.

SUBMISSION GUIDELINES:

1. ME/CFS patients only.
2. Submit by messenger. Can be attached as a Word document.

3. Give your name, age now, age when you undertook LP.
4. Circumstances leading to you undertaking LP, how long you had been ill.
5. As much detail about the LP as possible, the cost, and its effects.
6. How you fared after.

7. Any message to readers.
8. State whether you are willing to have your name on the post or if you prefer to be anonymous.

9. Take your time to write your article. We want a detailed account.
 
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strategist said:
Shouldn't this be highlighted? A collection of stories that show the dark side of LP, to counter the relentless promotion of LP as some sort of miracle cure?
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Agree. It is highlighted in the "about" section, but perhaps it could have been even more clear:
This is a collection of self reported true stories by ME/CFS patients who have experienced the Lightning Process. Please share these stories widely to raise awareness and protect others.
 
Thanks for posting, @Kalliope. I was just reading this woman's story, and I started thinking, why would Esther Crawley trial this? She can make up enough psycho-bullshit of her own without having to borrow from others.

Then the answer emerged quite clearly from out of the fog. Because it was financially worth her while (they might have underwritten all the research costs, making it like a freebie at the very least... and kickbacks at the worst).
 
I've just had an epiphany reading this last story from the patient from York... It became clear to me that there is nothing special or different or unique about the Lightning Process. It is 100% classic NLP. Long before I got sick, I did a 5ish lesson course (work related, not health related), something about effective business meeting skills I think it was. The teacher was so proud to tell us she was bringing us something brand new from the US called "neurolinguistic programming". It sounded great.

This:
The trainer puts four large cards on the floor. Each one has words on it. (...) You have to 'coach' yourself better and are then told to say positive affirmations about how great you are at being able to stop it and do you want to remain in 'the pit' or have a life you love? You then have to say you want a life you love and then move onto the 'life you love’ card and focus on a time when you felt really good and energetic and transport that feeling to the present and let it wash over you and energize you.
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is exactly what we had to do, just not about 'life' but about 'business'. Basically the same premise, just a different target. We had to draw imaginary circles on the floor, the first circle being the place of negative thoughts that wouldn't help you businesswise. Then we had to step over into the second circle. Over there we had to think about a time in our lives when we felt invincible, great, positive, etc. Really get into that moment. Make a fist with our right hand and capture that feeling. The fist I think was to get the positive thought and feeling ingrained into the physical. Then we had to go back into the first circle, and... make a fist and transport those powerful positive feelings into the negative circle! Wow!

Can you imagine how, at least in a business setting, this feels like it works? But basically it's nothing more than a pep talk, really.

So why all the secrecy? "Don't tell anyone about the LP process, or it won't work!" This is nothing different from any other basic NLP technique. In a business setting, well, whatever, I don't care if they overcharge companies for an auto pep talk. But telling patients they can cure their physical illness with this? That is beyond unethical. What Crawley is doing? I don't even have words for that.
 
Effi said:
But telling patients they can cure their physical illness with this? That is beyond unethical. What Crawley is doing? I don't even have words for that.
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I completely agree. Compounded by the fact that she's doing it with children who are told not to tell anyone what they are doing, and told they have to say they are better or the process won't work. That is so unethical the mind boggles. Adults telling children to keep secrets and tell lies is completely awful. Child protection should be coming down on it like a ton of bricks.
 
Woolie said:
Thanks for posting, @Kalliope. I was just reading this woman's story, and I started thinking, why would Esther Crawley trial this? She can make up enough psycho-bullshit of her own without having to borrow from others.

Then the answer emerged quite clearly from out of the fog. Because it was financially worth her while (they might have underwritten all the research costs, making it like a freebie at the very least... and kickbacks at the worst).
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I think it was more likely down to thoughtlessness than any sort of corruption.

Crawley was medical advisor for AYME, which was run by the terrifyingly stupid Mary Jane-Willows. I can easily see MJW being impressed by a few positive anecdotes, thinking that it would be good to run a trial on LP to be all rigorous and science, and no-one involved realising SMILE was junk and LP pseudo-science. They got some sort of discount for the LP training, but it looked like not much of one (I think the detail of this is in the SMILE paper? It's somewhere).

IMO it came at a time when Crawley & co felt invulnerable, so she failed to be sufficiently self-interested, and didn't worry about whether being involved in a poorly designed trial promoting quackery would harm her career/reputation.
 
Woolie said:
Thanks for posting, @Kalliope. I was just reading this woman's story, and I started thinking, why would Esther Crawley trial this? She can make up enough psycho-bullshit of her own without having to borrow from others.

Then the answer emerged quite clearly from out of the fog. Because it was financially worth her while (they might have underwritten all the research costs, making it like a freebie at the very least... and kickbacks at the worst).
Click to expand...

I took it as a lack of imagination with a need to do a trial to further her career and that she couldn't think of anything better. But motives are always hard. Perhaps she was taken in by patents interest and anecdotes of success. But the process of asking the ethical questions and the design of the trial methodology should have lead to her saying no. Or at least not first on children and with rigorous outcomes that wouldn't be effected by telling people they can think themselves better.
 
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