ME/CFS success story: Lightning Process on Youtube 2019

If the treatment that one endorses requires one to put the most positive spin on one's perceived results, how can others determine whether the endorsement itself is not an act of putting the most positive spin one's perceived results?

The very method of the treatment undermines the ability to judge the value of the endorsement.
 
Been there, done that. Have the very same experiences as described here. What LP meant in the real practical world, was a severe setback short term, and LP also contributed significantly ruining long term prognosis.

It’s chilling to read testimonies. The feeling of a cult, the language and the direct orders of how to interpret things, being told that you actually are doing ME and so on.

Going at it demanded efforts beyond, but as others, you get desperate and you have the heavy marketing and the miracle stories. Given the circumstances, it is not at all strange that in principle just about anyone can attend such course.

Also remembering this day two of the course as particularly insane, first attending the course day one, then instructed to go out and “enjoy” no matter what. Then on day two to put on a smile and lie to yourself and all others about what you had done and how wonderfully fine you felt, though awful and PEM. But it didn’t stop there, when coming home and then continuing to lie to yourself and friends. Yepp, I’m not ill anymore. Totally brainwashed. Fascinating in hindsight. But it was like this; I have to try, have to lie and go on, see where this goes, even when experiencing that you were heading in a totally wrong direction and straight into the ditch. What this brainwashing manner resulted in, was actually raising my percentage at work. I had sacrificed absolutely everything of health, really just floating on stamina and endurance and dealing with PEM to cling to my work, though only a small percentage. Now, newly brainwashed I raised the percentage 10%. It was madness. And then, after some months, stretching it far beyond healthy and reasonable, before that long beyond limits, it came to a hault. A full STOP! Work was reduced back to 0%, out of work for a long time.

So from the course to full STOP it took about 6-7 months of continuous brainwashing, lies and putting health at serious risk and with devastating consequences. LP gave a substantial push in the wrong direction. I knew then and know now that LP was the total opposite of what I needed as a ME-patient. It was very dangerous. LP is nasty, sort of a mistrust in mankind. The method presupposes that man can’t deal with disease in a positive and good way. Well, I think that is completely wrong for most people. That is missing the point completely.

In general I would say that as an ME-patient, most patients are more than capable of dealing with the consequences on a every day basis. They are adapting positively and LP is completely missing the target and potentially very dangerous for ME patients.
 
@Peter, thank you for sharing! I always feel insane just hearing positive testinonials everywhere. It helps to know others had the same experience, though I'm so sorry you went through that.

Peter said:
They are adapting positively and LP is completely missing the target and potentially very dangerous for ME patients.
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I agree so much! The LP coaches saying patients have adapted badly to their illness is false and very offensive. I wish patients ways of adapting to challenges and coping as best they can could be celebrated and valued. Not wrongly twisted into the reason for our illness.
 
I also started to push myself more after LP, even though I had already been pushing myself for more than two years without a diagnosis.

I did the LP a few weeks after getting the diagnosis. The doctors that diagnosed me at the hospital said "You're young, you will recover soon. Keep going to school and continue sports and you will recover gradually, look at this nice stair-like graph of your prognosis."

I didn't want to do the LP and didn't believe in it, but thought it was best to try since everyone was recommending it. I knew the LP coach had once had ME too, and I was looking forward to hearing from someone who knew what ME was like and be understood for the first time. Ha.

We weren't even allowed to talk about ME at the course, because that was a "negative focus".

I never understood how to implement the "process". It never worked, it made me dizzy, the words made me feel idiotic and annoyed, it was too difficult to remember all the steps with brainfog, I found it frustrating like pushing at a brick wall to tell my symptoms "stop".

But since they said we were no longer ill, and would recover if we believed so, I thought I would recover as I had never believed I was ill. I mean I felt very ill, but it was hard to believe I would never recover from that flu. No it had to pass eventually. And since the doctors said everything was fine too, I just kept pushing myself like before.

When school started the summer after LP I had 18 days of no sick leave from school. I was so proud, I remember having a calendar and checking off every day. It was the longest I had gone without sick days since I got ME. Usually I just went one or two days a week.

I also found out that if I didnt eat, I couldn't sleep much, and had a constant feeling of adrenaline, which allowed me to attend school more. So I barely ate for that entire school year.

I crashed badly in the end and couldnt finish high school. I am now mostly in bed. But all the teachers and doctors were so pleased about my determination to attend school.

This is one of the reasons I am furious about the SMILE trial being done on children. It could risk the children doing everything they can to attend school more or to appear more well. It's not about the well-being of the children, just pushing them to perform more like healthy children.

Especially when they have probably already been treated poorly because of their ME. Feel guilty about missing school. And then are told they are healthy. Someone probably hypes up the Lp and how exciting it is that they will get better.

Had I been in that study I might have said I was better just to try to get the adults to stop bothering me. I certainly said that to many health practitioners so I wouldnt have to see them anymore.

There also was little point in me attending school, as I could not focus because of brainfog. I was just doodling in my note book to distract from pain, and sleeping in the school bathrooms.

I wish I had been allowed to quit school, study at home in my tempo, learn having a social life from home etc, rather than being forced to put on the facade of a healthy teenager (that sleeps in bathrooms).
 
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rainy said:
This is one of the reasons I am furious about the PACE trial being done on children.
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I think you mean the SMILE trial.

Thank you rainy for sharing your awful experience. I am so sorry to hear you were put through that torment. I hope testimonies like yours will be taken seriously by those who control what is done to children.

If LP is put before the NICE committee in the UK, I would like these stories of patients' experiences to be shared with the committee. @Keela Too, @adambeyoncelowe, @saranbonser.
 
rainy said:
@Peter, thank you for sharing! I always feel insane just hearing positive testinonials everywhere. It helps to know others had the same experience, though I'm so sorry you went through that.
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There's no shortage of people who swear that their cancer (which they likely never had, although sometimes they are simply a misdiagnosis) was cured from either/or coffee enemas, drinking aged urine, all sorts of other crap like spiritual retreats or stuff like a diet of cat nails-with-cactus-sauce or whatever.

That's why the process of evidence has to be rigorous, even for very serious conditions there are entire industries of people claiming miracles out of the dumbest things. It is currently necessary for health agencies to put out advisories against drinking bleach FFS.

Right now, when pressed about the effectiveness, the response from proponents is the same as with CBT and GET: we cannot show in an objective way that it works but definitely feel that it does. Which is the hallmark of pseudoscience. The people pushing that know this, they don't care because they live with the firm belief that there is no disease and some magical brain power thingy is doing some unspecified thing that no one can verify but is totally true.

Honestly very likely that this will eventually lead to serious disciplinary actions and a few people losing their medical license, likely worse. It's a complete breakdown of the entire ethics and oversight process that a clinical trial on this nonsense was actually held and cult-like psychological abuse was actually promoted by medical institutions and professionals.
 
I wonder how Phil Parker frames congenital illness and disability. At what point before birth does the individual decide to ‘do’ their condition or does the mother decide on their baby’s behalf if it’s before they develop a nervous system?

Sarcasm; though if Phil Parker is on the forum I’d like a reply.

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Unfortunately we have our own offshoot of the LP here in Suffolk. They claim
  • What if I relapse?
    If you keep doing the techniques we teach you, you will NOT relapse. It just doesn’t happen because you are training your body to switch into healing and recovery. But if you stop or give up, you could feel just as ill as you do now
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http://www.thebodymindprogramme.com/questions-answers.htm

They also claim to "help" people with progressive MS

So far, the difference between relapsing/remitting MS and progressive MS has not been crucial to success. The most relevant factor seems to be the willingness of the participant to fully commit to using the techniques effectively. The earlier you start, the easier it is to get good results, but even people with severe symptoms have experienced improvements to their quality of life.
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With testimonials at the end of the page.
http://www.thebodymindprogramme.com/multiple-sclerosis.html

But their main focus seems to be on ME, CFS, chronic fatigue, fibro

The fee is £1,500 and includes the following;
  • All training sessions (12 hours in total)
  • Written course materials, audio meditation and online video tutorials
  • 3 x 30 minute one-to-one follow-up coaching sessions
  • Membership of our private online support forum
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Our Client Results Survey suggests that “80% of those diagnosed with chronic fatigue syndrome or M.E. have greatly improved”. Read more here.
(Please note that results vary from person to person)
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http://www.thebodymindprogramme.com/bodymind-programme.html

.
Client survey results
In 2012 we carried out an email survey of our clients’ improvements. The results below relate to 66 respondents diagnosed with ME/CFS.

Overall Improvements

On the improvement scale of 0 – 10, 83% scored between 8 and 10.

Young people

12% “improved” and 88% “greatly improved”.

Sustained good health

80% reported sustained good health.

Length of illness

This ranged from 3 months to 30 years. The average was 8 years.

Severity

36% were severely ill. Of these 4% “improved” and 87% “greatly improved”.

(Please note that results vary from person to person)
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Marking their own homework!

It's truly awful. It gives very vulnerable people false hope, charges a fortune, and blames them for not trying hard enough if they don't improve.
 
That is chillingly awful, @Daisy. Can your local group report them to advertising standards, like the MEA did with LP? Or ask the MEA to do it?
They surely can't make such outrageous claims that they can cure serious illnesses like ME and depression, and then say it's the patient's fault if they fail.
 
Yes it is dreadful @Trish

I've already complained about this lot to trading standards a few years ago. Believe it or not their claims were even worse. At one point they they even claimed links with the local NHS ME clinic citing names of the NHS therapists. That was removed after a complaint to the NHS.

These people are like whack-a-mole, it's been on my to-do list for a while, but there is so much to to deal with on their website that it will take a lot of effort and time.
 
If somebody claims that homeopathy cured their cancer, then I wouldn't necessarily jump to the conclusion that the cancer wasn't "real". Unless someone deliberately invented their cancer, I'd assume most cases are backed up by some kind of doctor's diagnosis, as you can't really self-diagnose cancer. But to me the more important point is that if someone has cancer, does homeopathy and goes into remission, that in no way has proved homeopathy was the cause of the remission. That needs to be established with independent trials. I'm not going to bother explaining that to Phil as I'm sure he already knows this.
 
I haven't listened to this latest podcast from @ScottTriGuy
When Alice Urbino was a young teenager she got the flu and never got better. Her mother - desperate for her daughter to recover - paid for what she thought was a legitimate treatment -- even though young Alice could plainly see the ‘lightning process’ was based on pseudoscience.

Nevertheless, Alice was pressured to partake in a cult like atmosphere with absurd rituals that amounted to brain washing. Alice was made to believe that she chose to be sick, and that even expressing feelings of nausea or fatigue were signs that she wasn’t trying hard enough and that she had the wrong attitude and that’s why she was still sick.

Not surprisingly, young Alice was brain washed and internalized the blame and shame and soon became depressed and started hating herself. For years, belief in this ‘treatment’ affected Alice’s mental health and belief in herself and the physical symptoms she experienced.

In our interview, Alice tells us how she overcame the internalized gaslighting caused by the lightning process, and to warn us about what she learned about the lightning process’s infamous founder Phil Parker, who professes to have the “ability to step into other people’s bodies...to assist them in their healing”. Parker - who is often called out as a charlatan on social media - has a long history of financially preying on the sick, vulnerable and desperate.
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might be something to link to counter LP propaganda(?)
https://player.fm/series/medical-er...internalized-gaslighting-beware-of-charlatans
 
MEMarge said:
It's a very good podcast.
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Yes it was a good episode with an all too familiar story. Alice Urbino was very eloquent with great reflections and analysis. She was just a teenager when she did LP and has been in therapy for help with untangling the internalised gaslighting it led to. Wonderful of her to tell her story and she did a great job. I hope it will inspire even more to come forward with their LP experiences.

If others too are struggling with the background music with drums, it stops about 4.30 minutes into the episode.
 
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Sly Saint said:
I haven't listened to this latest podcast from @ScottTriGuy


might be something to link to counter LP propaganda(?)
https://player.fm/series/medical-er...internalized-gaslighting-beware-of-charlatans
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Despite some sound quality issues this interview should be required listening for anyone considering undertaking the LP and even more so for all those health professionals who well-meaningly but naively push it on patients (my husband has had both a GP and a physio, both otherwise competent, seriously suggesting LP). I like to think that those health professionals have been taken in by slick marketing and have never looked beyond that. Which is bad enough but anyone who after listening to this interview still takes the LP seriously and pushes patients towards it ought to be criminally liable for malpractice, especially if the patients are kids.

Alice, if you're reading this: thanks for telling your story. I hope speaking out helps you get over the harm you suffered and I'm sure it will help at least some others avoid the same harm by causing them to think twice.

Comparing the LP to Scientology and cults in general is apt. The other comparison which springs to mind in gay conversion therapy. May they all go to the devil :devilish:.
 
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