But how does it work for some people? That's what's really bugging me at the moment. Recently I met a PWME that I know, who had done it a month before and said he was doing really well and it was marvellous and he wasn't ill anymore. And I've just been accosted by an acquaintance who'd heard I had ME and had to tell me about the LP because it had cured his brother and was telling me to do it with evangelical zeal. I said I'd done it and it hadn't worked for me and he just looked at me with great disappointment, as if I'm a failure. All this really upsets me and makes me feel like I'm inadequate and some kind of failure. I know the LP is BS and you can't "think" a physical illness better. But why am I left feeling so annoyed and upset?
That's one of the problems with this illness, isn't it... It makes us
all feel inadequate and a failure, at times.
The Lightning Process (which isn't a medical treatment) is designed to put the burden of blame of illness onto the patient. It asserts that we are at fault for our illness, and only we can make ourselves better, as if we are helpless failures, and victims of our own inadequacies. The Lightning Process exploits people when they are at their most desperate, charging huge amounts of money to people who have nowhere else to turn. Just like GET, I think it's a cruel, compassion-less and aggressive approach to medicine. Not only that, but it's not based on any proper evidence. It's a private money making enterprise.
People diagnosed with 'CFS', don't necessarily have the same condition. 'CFS' diagnoses a heterogeneous patient populations. So a few people with chronic episodes of fatigue might find a positive thinking course helpful.
Also, many people with CFS/ME can improve or stabilise naturally over time.
So if this natural improvement coincides with their LP course, then they would believe that the LP helped them.
But obviously, asserting that positive thinking will help a neurological disease, is not much different to witch craft or voodoo, and it wouldn't be allowed with other diseases, such as HIV/AIDS or MS or Parkinsons.
The PACE Trial is a good example of how natural improvements can make people believe that their therapies are helping people.
In the protocol of the PACE Trial, the authors of the PACE Trial stated that they expected about 10% of patients to improve naturally, and about 60% of patients to improve after treatment with CBT and GET.
Bit in reality, once the evidence was gathered from a medical trial, it was found to be the other way around: in the group that were receiving standard medical care (that you would expect to receive from a GP) about 60% improved (at least a little) naturally, and only 13% of CFS/ME patients improved as a result of GET or CBT. The "13%" figure would probably have been even lower, if they had only selected ME patients using an internationally recognised diagnostic criteria, and the rest of the methodology/analysis had been less manipulated for results that were more favourable towards CBT/GET.
Like the LP practicioners, the psychiatrists also blame us for our illness, saying we have a fear of exercise or deconditioning etc. But the PACE Trial utterly proved them wrong. Patients have been telling them the truth for years, but their agressive, medically ignorant, arrogence led them to believe that they were right and patients were deluded. Well, now we have the truth, but they are still promoting the same lies, telling everyone the lie that "60%" of patients improved as a result of CBT and GET in the PACE Trial. This is a lie. To be clear, only about 13% of CFS/ME patients acheived a clinically useful improvement as a result of CBT and GET, and 87% were left unhelped by CBT and GET.
So that's the truth, and it's very different to anecdotal reports of recovery.
It shows that practicioners'
beliefs about illness and recovery are deluded, and
not the patients' beliefs.
The next time someone says that LP is helpful for CFS/ME patients, ask to see the medical evidence for that.
(There isn't any, which is why it isn't a medical treament.)