I almost didn’t get to join the course, since I obviously “answered wrong” and fumbled in English when the course leader called. Apparently I wasn’t “ready”. I “clarified” this and got to join.
I had filled out a questionnaire beforehand which I had been sent, which was part of the selection of the “correct” participants.
The telephone interview was the last hurdle in order to be accepted as suitable candidate for LP. Scepticism and doubt was not allowed. At that time there were a lot of articles about LP in the media, especially magazines and tabloid newspapers would often contain miracle stories about recovery from ME by LP. I was therefore being advised from far and wide to try this “miracle cure”.
All of the course participants were from Norway, which says something about the hype in the Norwegian media that they could organise separate courses in England with Norwegians only. I didn’t recognise myself in the course leader’s descriptions of “negative thought patterns”, “fear of symptoms”, “anxiety about deterioration”, “sustained stress” and so on. But thought that this course cost a lot of money, and I would at least do my part to try to get well from this disabling disease that takes so much from one’s life.
On day 2 I was a bit surprised to experience a kind of hallelujah-mood around me.
I remember I talked about it with my husband, who was with me on the course. There was a kind of Scientology vibe all over.
This is for certain brainwashing, my husband commented. I experienced it as a mass suggestion which I felt was quite uncomfortable. But I was still willing to work with the method to see if it gave any improvement.
I found the method itself rather banal. A type of self-hypnosis. It’s weird and indecent to take so much money for something like that. The method is well described by others, so I’ll skip it here.
We were almost forced to sign that we had recovered from the course.
The charismatic and experienced course leader was placed at the narrow exit door, and we could not leave the room without saying that we no longer “did ME” and that we were recovered, as well as signing that we had recovered.
This is the whole key to success of the concept. And the basis for the good recovery statistic they’re constantly referring to.
It is no wonder “everyone” recovers, when the method involves lying to both oneself and others and claiming that one is completely healthy, even if one is definitely not. I assume the other participants were as exhausted as me after three days with the course, so we signed without much protest.
I asked for a copy, but that was ignored and after all I was “recovered” (read; completely spent) and wanted to get out.
We were strongly advised not to have contact with other ME patients or to be a member of the ME associations or ME groups on Facebook. Therefore I don’t know how the other participants did. I had a small boost after finishing the course. I really wanted to get well and mobilised what I had of strength to practice LP and appear healthy. Family and friends in Norway had high expectations for this. My children wanted a healthy mother back from the LP course.
But even my daughter, who was only 18 at the time, got bad vibes from all the secrecy surrounding the LP method and understood that something was amiss.
After a few weeks I had a huge crash. It goes without saying that there’s no point in ignoring serious disease and living as normal. It’s simply dangerous! One of the worst things was the guilt and feeling of failure you almost have imposed on you, because you can’t “manage” to get well. It triggered a period of shame for having been cheated, and shame for having lied about it. And it actually still hurts that I had to lie to family and friends and say I’d recovered, when I did not feel well at all.
Fortunately, I realised rather quickly that LP is nothing but fraud, and chose not to take the blame for being so unlucky to develop ME, and for still being sick after having taken a course and practiced LP for a long time.
But I’m angry on behalf of everyone who is further broken down by this “defeat” inflicted by cynical people who want to make money from severely ill people. I also feel that I was deprived of the opportunity of some recovery, from ending up with a milder degree of ME, by attending an LP course with a consequent deterioration.
If I had paid attention to the symptoms and done pacing, I might have had a better life today. Now I am house bound and sicker than before I attended the LP course.
My everyday life consists of making tough priorities, such as choosing between eating breakfast or taking a shower. I have become dependent on a lot of help from my loved ones.
But I know that many people have it even worse than me after having finished an LP course. So I disagree strongly with the claim that LP is harmless to try.
Fortunately, I was born with a positive attitude and have never done either body scanning/symptom checking or been particularly bothered with health anxiety. I have also never lost hope that biomedical research will one day lead to drugs, treatments and recovery.
I still have a lot of plans and hope for the future, even if I’ve been sick for almost 23 years. I was very motivated when I went to London to participate on the LP course. I felt I owed those around me to try everything in order to get better and to be able to participate again in my life and in the lives of my husband and children.
It’s painful and hard to watch life pass by without being able to participate as one wishes, even though I have long accepted that I’m sick and adhere to my limitations. Fortunately, most weekdays contain some small joys and things to be grateful for as well.
I’ve spent a lot of money on a long and thorough medical assessment in the health care system before the diagnosis was made, as well as on private doctors and alternative treatments in the hope of recovering. Therefore it’s rather provocative when it’s claimed by some that ME sufferers who don’t recover from LP don’t want to recover.
The only thing that has stabilised the condition and given some good days in-between, has been pacing and some dietary changes, and nothing has had such negative effect on my health and quality of life as LP did. Everything else has been done by adapting to my limits, while on the LP course we were told to ignore all symptoms and live as we did before ME.
I was told to stop taking painkillers and allergy medicine as well, because it was ME that made me allergic and gave me pain and now I didn’t “do” ME anymore. We were also supposed to get rid of everything that reminded us of the disease; medicine, supplements, diet food, chairs for resting, special beds, wheelchairs, aids, as well as people who were negative. It could be your spouse, boyfriend, relatives or friends.
One can only imagine what fatal consequences this would have for health and quality of life! In retrospect, it’s easy to compare this with how a sect operates.
It’s a real shame that these LP activists will continue to control the media and politicians because they have a broad network and lobby for their own industry.
They operate in conspiracy theory style by denying and ignoring facts such as that serious researchers have long ago presented enough research proving that ME is a physiological disease, and that studies on cognitive treatments actually show that it doesn’t heal, but rather leads to worsening.
In addition, fake news is spread by constantly referring to studies that in reality are discredited due to bad design and cheating with results.
I am incredibly grateful that The National Committee for Medical and Health Research Ethics stopped the LP study, which should never have been approved by one of the Regional Committees for Medical and Health Research Ethics. It has prevented greedy and dishonest alternative practitioners from getting access to public money, and severely ill people from being pressured into something that can lead to serious consequences for the individual and their loved ones.
Hopefully, more doctors, psychologists, researchers, politicians and society in general will soon wake up, and take a look at all the updated biomedical research that’s now available, both in Norway and in the rest of the world.
It seems completely absurd that we in this country are still debating this potentially very harmful, or at best ineffective, alternative “treatment”, when the rest of the world has long since abandoned this subject.
It’s really extremely unprofessional of doctors and researchers in particular, to share opinions about a disease in which they haven’t kept up to speed with the research. Perhaps these proponents of alternative therapies now will calm down, so that ME sufferers can finally get the publicity, treatment and help severely ill patients actually need and deserve. Let’s hope!
Regardless; Lightning Process is in my eyes pure fraud and potentially very harmful for ME patients, and is strongly discouraged. If someone needs help with the psychological aspect of living with a physical severe and chronic illness, there are better, safer and cheaper options within Norwegian public health care.