Lightning Process - discussion thread

Lou B Lou said:
2020 Interview about Lightning Process, with ME patient and advocate Joan McParland (Founder and former Chair of Hope 4 ME & Fibro Northern Ireland). Joan spells out what exactly happens during Lightning Process trainings and exactly how Lightning damages ME patients physically and psychologically.


'I have been conned - When sick patients are sold psychological snake oil"

https://medicalerrorinterviews.podb...ck-patients-are-sold-psychological-snake-oil/

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Another excellent interview by Scot Simpson. Joan McParland deserves a medal for what she has achieved despite being so badly afflicted by ME.
 
oldtimer said:
Another excellent interview by Scot Simpson. Joan McParland deserves a medal for what she has achieved despite being so badly afflicted by ME.
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For once a pwme Was awarded a medal for their work, 2023:


https://www.s4me.info/threads/me-patient-campaigner-joan-mcparland-has-been-awarded-an-mbe.33732/

'Congratulations to the indefatigable Joan McParland on her newly-announced MBE*

"Mrs Joan Elizabeth McParland, For services to People with Myalgic Encephalomyelitis & to their Families & Carers in Northern Ireland"

https://www.newsletter.co.uk/news/p...ecipients-to-receive-awards-full-list-4185650

*Member of the Order of the British Empire'
 
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I was quite alarmed to see the following in a letter from the NHS Long Covid clinic I have been attending for the past year (they have not been much help). From the NHS! I replied with feedback that I did not think it was appropriate to promote these programs and shared articles criticising their practices.

"Consider looking into the below mentioned websites. https://lightningprocess.co.uk/lightning-process/ DNRS program Retraining The Brain with the Dynamic Neural Retraining System"
 
CovidSpice said:
I was quite alarmed to see the following in a letter from the NHS Long Covid clinic I have been attending for the past year (they have not been much help). From the NHS! I replied with feedback that I did not think it was appropriate to promote these programs and shared articles criticising their practices.

"Consider looking into the below mentioned websites. https://lightningprocess.co.uk/lightning-process/ DNRS program Retraining The Brain with the Dynamic Neural Retraining System"
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I guess whilst you’re still involved with them you may not wanna get into an official complaint. But this deserves one.

Could you maybe share screenshots elsewhere anonymously so there’s a record of it and which trust it is out there. I think it would really help patients argue for an overhaul of the pathways for LC if it gets out that this is the current offer from the NHS or certain branches of it at least.


Why don’t they suggest a quick online search for the any nonsense out there, why do these particular peddlers get the endorsement?

What sets them apart, is it like endorsing branded baked beans as opposed to supermarket ones, or something?

What are the financial calculations if you go off and waste money on this bullshit that’s a couple of months that you won’t be troubling our local health authority for treatments?
 
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@CovidSpice It would probably be a good idea to alert patient organisations to this letter I’m not sure about LC organisations but ME Organisations would have contacts in NHS DHSC they could raise it with. Lighting Process is referred to in the NICE guidelines 206 on ME/CFS and is not to be offered. ME Association took the Lightning Process “owner” to Advertising Standards several years ago as they were advertising it as a treatment and cure.

No way NHS staff should be pushing people towards it.
 
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Professor Jonas Kunst has some good comments on LP:

Kalliope said:
This is a Lightning Process story that has already been told several times before in the media, about a young woman who suffered from severe ME but now has recovered and has become an athlete. What's not to love?

It was told once again today by Norwegian TV2.

What's new to the story though are some critical comments about LP by a professor in psychology. It's so good to finally see some more nuanced media coverage about LP in my country:

(auto translated)

Lightning Process is a controversial self-help program. TV 2 has spoken to Professor at the Department of Psychology (UIO), Jonas R. Kunst, who is not convinced that the treatment is effective.

– Lightning Process is a self-help program that claims to be able to improve the health of people with ME, a condition for which there is broad agreement in medical fields that there is no treatment. The program is based, among other things, on a purely speculative assumption that a chronic stress response, which is allegedly due to the sufferers' focus on symptoms, maintains the disease, he says.

– Does the treatment work on ME patients?

– There is no good evidence that Lightning Process has a positive effect among ME patients. On the contrary, several report that they have experienced a worsening of their symptoms after going through the program. Based on this, for example, British health authorities explicitly warn against people with ME participating in Lightning Process. In the UK, Lightning Process has also been convicted of being misleading in its marketing, Kunst replies.

The professor points out that studies indicate that only a few patients with ME experience spontaneous recovery and recover.

– What is your view on the Lightning Process?

– Most up-to-date professionals have long since shelved the Lightning Process. Those who still hold on to this method often have personal or financial interests. For example, they may have built their careers on outdated psychological explanatory models for ME, or that they themselves are involved as LP therapists, the professor answers.
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From a post elsewhere by @Utsikt:


Just a reminder that a Norwegian 13 year old boy attempted suicide after trying LP that was recommended by Wyller. This was in 2011.
Had a breakdown two weeks later
The boy, who had just turned 13, participated in the course along with five other young girls and their parents.

– There was a hallelujah atmosphere at the course, and one of the first things he heard was that if he didn't recover, it was his own fault, his father tells NRK.no.

The course instructor does not recognize himself in this description.

At the end of the course, the boy was asked, according to his father, if he was well.

– “No, but I have gotten much better,” he replied.

After completing the course, the boy experienced a slight improvement, but two weeks later he collapsed. His mother found his son in his room one morning where he had attempted to take his own life.

"He couldn't recover, and felt it was his own fault. He was devastated that he hadn't managed to commit suicide," says his father.
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https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470
 
There have been some quite perturbing stories on Bluesky recently of people being cajoled into undergoing the LP by NHS clinicians; there seems to be one centre in Scotland, in Glasgow, that routinely pushes this, but they're not the only one. Hope the charities & advocacy organisations are aware of these reports and are making complaints to the relevant bodies; it isn't just against the NICE guideline, it's also blatantly unethical.

└─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:09:03.476Z]
I was offered the Lightning Process by NHS Scotland in 2022 *after* NICE updated its guidelines. This was at the glasgow centre for integrative care.

I asked my GP to refer me, figured it would be helpful to have some support. Fully expecting mindfulness & meditation, but not the LP.

1/
├─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:12:18.723Z]
│ In my first consultation, via video call, the consultant spent the whole hour telling me how my ME is my nnervous system being upset and then trying to hard sell the LP ("unique opportunity, normally it costs 1000s, but hurry, places are filling up quick", etc)
│
│ 2/
│ └─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:15:18.235Z]
│ Thankfully I was aware of the LP and the fact the NICE guidelines explicitly state it should not be offered to pwME, but I was so shocked with it all that I didn't push back.
│
│ When I didn't readily accept her offer, she told me to "do my own research" (using links she provided!!)
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│ 3/
│ └─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:17:43.907Z]
│ and then proceeded to tell me "Don't look on the ME charity web sites, for some reason they don't want you to get better."
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│ Never spoke to them again after that call. Spoke with an ME charity but since scotgov had not yet ratified the nice guidelines, there wasn't much that they could do...
│
│ 5/
│ └─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:21:05.739Z]
│ But she was so insistent and if I hadn't had prior knowledge of the LP I might well have gone along with it and be much worse off than I am now
│
│ Shockingly I think they are still offering this.
│
│ And this is exactly why our government should #FundThePlan so this abuse can finally stop.
└─ [@lifeatthewindow.bsky.social] [2025-03-05T03:22:32.799Z]
They’re still offering it at that centre

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└─ [Something Chronic | @somethingchronic.bsky.social] [2025-03-04T21:55:27.460Z]
I had an NHS physio try to recruit me into the Lightening Process – even showed me meetings on the website. I think they saw me as ‘in need’ or ‘vulnerable’. Luckily I was already aware it was a scam but I think it’s shocking the person abused their position like that, even if they believed in it.
└─ [Michiel | @murtoz.bsky.social] [2025-03-04T22:25:19.155Z]
Exactly the same experience, except it was an NHS consultant. She had just gotten LP certified and gave me an hour long hard sell of how it was all just stress and I should be doing the LP. I was so shocked I couldn't even push back during the call.

This is exactly why labour should #FundThePlan
 
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Tom Kindlon said:
Adverse reaction following the Lightning Process shared today on my FB page


Because participants are programmed to say they are well and not mention symptoms & impairments, positive testimonials are very unreliable

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A reply:

Mads
‪@blueforpwme.bsky.social‬
Meant to add that I also tried the LP back in 2010/11 and felt like a superhero for a few weeks then crashed badly with awful flu symptoms, fever, swollen lymph nodes etc

https://bsky.app/profile/blueforpwme.bsky.social/post/3ljn5ypzyl22s
 
Saw this published in two locations. Weird advertorial masquerading as news, featuring a GP who claims her daughter recovered from ME/CFS/LC with the LP and became a coach herself. Hard not to see the strong parallels with QAnon and the conspiracy fantasy rabbit holes, it reads exactly the same to me.

How the Lightning Process gave my daughter her life back
https://www.msn.com/en-gb/health/ot...ss-gave-my-daughter-her-life-back/ar-AA1AVLjO
 
rvallee said:
Saw this published in two locations. Weird advertorial masquerading as news, featuring a GP who claims her daughter recovered from ME/CFS/LC with the LP and became a coach herself. Hard not to see the strong parallels with QAnon and the conspiracy fantasy rabbit holes, it reads exactly the same to me.

How the Lightning Process gave my daughter her life back
https://www.msn.com/en-gb/health/ot...ss-gave-my-daughter-her-life-back/ar-AA1AVLjO
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This part always gets me.
“I was sceptical—as a doctor, I always leant towards traditional medicine and forms of care. But we had nothing to lose,” she says. “After carefully exploring the research and finding out all we could, we decided to give it a go.”
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I’m glad her daughter is doing better, but I’m so tired of the gaslighting..
 
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