The Issues...
I think that most people on the forum would accept that some people diagnosed with CFS have been helped by The Lightning Process... and also that some people have not been helped by it, and some people have been made worse by it...
But we have absolutely no idea what percentage of CFS patients might potentially be helped by The Lightning Process, and what percentage would be made worse by it, as there have been no independent studies carried out...
We also have no official understanding about what subset of ME/CFS patients would be helped by the process.
On this forum, our many criticisms of The Lightning Process have been made rationally and have been expressed very intelligently.
Personally, all I am worried about is people being exploited... both on an individual level, and also at a community level... That is my only concern.
Our criticisms lay within the following areas (except, obviously I don't speak for everyone):
Some patients have been made worse by The Lightning Process (there are no independently verified figures, so we don't know what percentage suffer harm from the course) (If a medication was found to cause harm, to the patients it was administered to, then it would be banned).
There is no transparency about the nature of the training course - it is a very secretive organisation - customers are not allowed to discuss the course, or their personal experience of the program, and they have to sign a contract to confirm this. (This limits the amount of independent scrutiny that The Lightning Process can be subjected to).
It is not an officially recognised medical treatment, nor has it undergone any medical trials, but it is sold to patients as a course which leads to 'recovery' from ME.
We have no independent insight into how many patients are made better, what improvement they experience in symptoms, and how long they remain improved for (in other words, we have absolutely no idea how successful the program is, other than going by what the people who are selling the program tell us).
The nature of the training course flies in the face of current scientific knowledge about ME.
Propaganda/marketing from course practitioners seems to be so easily accepted, as fact, by otherwise intelligent people who would usually have a more enquiring mind - this seems to suggest an extremely effective PR and marketing operation.
The course invalidates the disease (ME) and patients' experience of illness, by ignoring symptoms and treating ME as a psychological disease.
The 'training' ignores the symptom of 'post exertional malaise' and goes against current understanding of the illness.
The training is the exact opposite of 'pacing', which is a very popular, and widely used, symptom management technique used by many ME patients.
The main component of The Lightning Process is a purely psychological technique (NLP), which suggests that ME is a psychiatric disease.
There is anecdotal evidence that the course can be run in a manner that is ignorant about the disease and the symptoms of the patients.
There is anecdotal evidence that some patients are treated as failures when they can't complete the course, or if the course is unsuccessful for them, or if they are in too much pain to be able to comfortably carry out the tasks.
There have been no independent trials or studies of the program (so the only information that we have is from the course promoters).
The Lightning Process is based on an NLP technique, which is a form of positive thinking (How many other physical diseases are seriously treated with positive thinking, or NLP, as a route to 'recovery'?) (Note that NLP does not involve CBT, as some people mistakenly believe).
The NLP technique used in the Lightning Process is a cross between positive thinking and a belief system. The technique has appears to have similar qualities to faith healing.
ME patients are vulnerable and need to be presented with all the facts, so that they can make an informed choice. The only information that we have about the Lightning Process is individual recovery stories and Lightning Process propaganda/marketing/PR.
The Lightning Process does not offer refunds if it doesn't work. This means that if someone does not recover, or is made worse by the course, then they are about 500 (about $750) worse off. If the Lightning Process offered a refund for participants who were not satisfied, and for those who dropped out, or for those who do not see an improvement, then this would at least make them more credible. If they are so convinced about the success rate of their program, then they could easily offer a refund. It is such a controversial program, that offer a refund would at least make the organisers look like they really cared for the people who the course didn't work for.
There seems to be an aversion, on the part of the organisers, to accept that the course fails, or simply won't work, for a significant proportion of people with ME. The failure to acknowledge this clearly enough appears like dishonesty. There are individual stories of failure, and CFS/ME may well have large subsets of patients which do not respond to therapies like this.
It seems, from reading individual testimonies, that the nature of the Lightning Process is such that if a participant does not respond positively to the Lightning Process then they themselves are blamed for their failure to recover because they have not worked hard enough at the technique. Individual testimonies have explained that this has been very stressful for some participants when they have complained that they are unable to comfortably carry out the expected activities, their worries have been dismissed and they have been told to work harder, even though it is causing them distress.
The Medical Trial to be carried out on children:
There is going to be a medical trial carried out on children, before a safety study has been carried out on adults. (We have discussed the potential dangers involved for the children involved in the study, including issues surrounding: informed consent; parental pressure; parental ignorance of the details of the course; potential developmental and psychological damage; undue pressure placed on the children to get well; inappropriate pressure to return to school too early; abuse potential; potential of physical harm; potential of a severe worsening of symptoms; pressure on the patients to conform to the beliefs of the practitioners; pressure on the children to say that they feel better in order for the study to look successful; invalidation of the patients' experience of illness and symptoms; undermining the child patients' sense of self and the legitimacy of their personal experiences; the dangers of teaching a child to ignore and to override the sensations of illness and exhaustion that the patient receives from their own bodies; and other issues).
If elaboration is required for any of these points, then please ask questions, or read through the various threads on this forum which relate to the Lightning Process.