CFS is getting on my....

[yabeeb]

Y

No, I haven't done the Lighning Process because in the early days they didn't exist, and way back then I did equally stupid things like NLP and similar things to the LP. All of which the sellers of claimed would cure me. Learned my lesson that this was a waste of my limited time and money. Didn't help in any way what-so-ever with my sore throat, glands and flu-type illnesses and all the infections. I don't have anxiety or adrenaline problems.

Maybe that is something others will be able to help you with. If the LP can clear up your symptoms for months then maybe there are other similar things that could help with this? Must have been awful to lose the improvement you made with LP.

Yeah maybe I should give it another go one last time before I spend some serious cash. I have such resistance to it and not sure why. Maybe I've lost any belief that it works in the long term. Also it's quite impractical if you are working etc cos you have to keep stopping every 5 seconds to do the process - every time you have a symptom or a thought about a symptom. But then I guess I should be willing to do whatever it takes...

 

[SOC]

I have such resistance to it and not sure why. Maybe I've lost any belief that it works in the long term.

Maybe it's because LP is about trying to convince yourself that what you and your body know about your symptoms isn't true. Denial only works so far and for so long. Reality eventually sets in.

Telling yourself over and over you're not sick may work if you have hypochondria, and it may convince a genuinely ill person in the short term that the truth is not true. Denying your real symptoms doesn't make them magically go away.

I can't speak to the effectiveness of LP in getting rid of imaginary symptoms. Genuine symptoms don't go away just by pretending they don't exist. If they did, we wouldn't need doctors and expensive specialists. Cancer would be cured in a matter of days. No one would die of heart disease. Pharmaceutical companies would go out of business and we'd all have a lot more money in our pockets.

 

[ukxmrv]

Maybe something to consider with the LP is if you have a relapsing type of disease that goes through fluctuations or how the severity of your disease is anxiety related or affected.

My disease is pretty stable with no remissions and stuck at a level that I cannot bathe or dress myself or leave my home reliably. It's easy for me to tell if something is helping me or not. The psychological (and I count NLP here) stuff I did didn't make any difference to any of my symptoms. Doing the courses and the homework knocked me badly like any exertion like that would.

It can be very hard to judge how effective something is if your symptoms fluctuate or if you have times of the year that naturally you feel better. Then again if the LP acted on your anxiety symptoms that could be something exploring. There are other threads on this forum on people treating their anxiety.

 

[yabeeb]

Thanks both. The LP person I saw had a weird way of blaming people if it didn't work for them which doesn't really lend itself to trying again. Who wants to try really hard, 'fail' and then do it all over again?! Not me. I have no idea how it helped temporarily - if it was the placebo effect or what but without any rigorous trials no one really knows it's effectiveness. Some lucky folk do seem to respond to it long term though. Grrrr.

 

[SOC]

Some lucky folk do seem to respond to it long term though. Grrrr.

One has to wonder if they had real or imagined symptoms. Talking yourself out of imagined or exaggerated symptoms might work. I don't see any mechanism whereby genuine symptoms can be "thought" away permanently.

 

[Wildcat]

.
Here are full descriptions of what doing the Lightning Process involves. Forewarned is forearmed.
.

http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

'The Lightning Process Didn't Work For me'

Shedding light on the lightning Process
.

“…..in the afternoon session we were told that the reason we had M.E is that we have negative thoughts. Every time we have them our adrenal glands give us ‘a squirt of adrenaline’ this builds up and stops your body functioning properly.

The Lightening Process would stop this happening. This was a miracle. The five hundred and fifty pound wonder.

The tutor stood up. ‘To stop this you have to get up and say ‘Stop’ make a physical movement, step back or cross your wrists in a pushing away movement.’ And she did the movement for us.

Then she showed us how to go through an affirmation/self-coaching process, which I think is copy righted so I’ll paraphrase.

You ask yourself if you want to choose happiness. Which you obviously do and then you say how fantastic you are to have stopped the negativity thought. You ask yourself what you really want, then you answer yourself, and again ask yourself how you are going to get there. The answer of course is to keep doing the process, getting rid of those negative thoughts. Then you tell yourself how great you are again and maybe have a bit of a hug with yourself, then…….. no nothing, that’s it.

Kerching. Five hundred and Fifty pounds please…..”
.

 

[Wildcat]

.
So, us naughty negative people have 'created' a nasty disabling disease with our 'negativity.

But Lightning Process encourages reckless ignoring of sensible and necessary pacing, which is why there is such a high rate of serious ME relapses, to a more serious level of illness than before the people had done the Lightning Process.

NLP does not 'cure' or 'train' away serious organic diseases.

.
'Positivity', and various mind methods can create a temporary 'high' and a kind of a boost, but unfortunately it doesn't last. And where the person is physically sick, the 'positivity boost' can lead to backsliding, or serious relapse.
.

 

[ukxmrv]

I've not met any of these people who have responded to the LP long term.

Have however met people who have undergone the LP or the other similar ones that we have in the UK and done badly afterwards or been in deep denial over their ongoing symptoms. We even have a member in my family. Not seen any long term benefits.

The stop/start technique could be useful if anxiety was causing symptoms would be my guess. Maybe also if there was a psychological component such as intrusive thoughts stopping people from doing things that it was now safe to do. Such as a person who had recovered from a post viral illness and who was now well enough to exercise or work again but who was frightened.

However, I don't have this problem and other people with more experience in that area would be a better judge of it's effectiveness or application.

 

[yabeeb]

I've not met any of these people who have responded to the LP long term.

Have however met people who have undergone the LP or the other similar ones that we have in the UK and done badly afterwards or been in deep denial over their ongoing symptoms. We even have a member in my family. Not seen any long term benefits.

The stop/start technique could be useful if anxiety was causing symptoms would be my guess. Maybe also if there was a psychological component such as intrusive thoughts stopping people from doing things that it was now safe to do. Such as a person who had recovered from a post viral illness and who was now well enough to exercise or work again but who was frightened.

However, I don't have this problem and other people with more experience in that area would be a better judge of it's effectiveness or application.

Funny you say that. The one person i knew who it helped was in a post viral illness rather than ME. No i tell a lie - she did Gupta Programme come think of it not LP. It is virtually the same but worse because you have to talk to yourself for about 10 mins rather than 2. I tried that too but ended up sending the CD back and getting a refund. Shame i can't do that for LP. I p*ssed over 600 sheets up the wall on it. Could have spent it on KDM. Does KDM actually do a definitive diagnosis? Even though i have had one by UK standards (ie diagnosis by elimination) it would be nice to know there is actually something biologically wrong with my body.

 

[yabeeb]

.
Here are full descriptions of what doing the Lightning Process involves. Forewarned is forearmed.
.

http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

'The Lightning Process Didn't Work For me'

Shedding light on the lightning Process
.

“…..in the afternoon session we were told that the reason we had M.E is that we have negative thoughts. Every time we have them our adrenal glands give us ‘a squirt of adrenaline’ this builds up and stops your body functioning properly.

The Lightening Process would stop this happening. This was a miracle. The five hundred and fifty pound wonder.

The tutor stood up. ‘To stop this you have to get up and say ‘Stop’ make a physical movement, step back or cross your wrists in a pushing away movement.’ And she did the movement for us.

Then she showed us how to go through an affirmation/self-coaching process, which I think is copy righted so I’ll paraphrase.

You ask yourself if you want to choose happiness. Which you obviously do and then you say how fantastic you are to have stopped the negativity thought. You ask yourself what you really want, then you answer yourself, and again ask yourself how you are going to get there. The answer of course is to keep doing the process, getting rid of those negative thoughts. Then you tell yourself how great you are again and maybe have a bit of a hug with yourself, then…….. no nothing, that’s it.

Kerching. Five hundred and Fifty pounds please…..”
.

Hilarious. It actually made me larf out loud cos it's spot on. That's what they do. Whoever wrote that should become an LP coach!

 

[Sushi]

....I p*ssed over 600 sheets up the wall on it. Could have spent it on KDM. Does KDM actually do a definitive diagnosis? Even though i have had one by UK standards (ie diagnosis by elimination) it would be nice to know there is actually something biologically wrong with my body.

Yes, not to stray too much off topic here (if you want to discuss it further we could go to another thread), but KDM does extensive testing and does give a diagnosis based on the results of lab tests. I haven't heard of anyone who has seen him who didn't have a lot of abnormalities show up in testing--immune system, pathogens, gut, etc.

Sushi

 

[yabeeb]

Hilarious. I love your paraphrasing`. It actually made me larf out loud cos it's spot on. You should become an LP coach!

Yes, not to stray too much off topic here (if you want to discuss it further we could go to another thread), but KDM does extensive testing and does give a diagnosis based on the results of lab tests. I haven't heard of anyone who has seen him who didn't have a lot of abnormalities show up in testing--immune system, pathogens, gut, etc.

Sushi

Cool thanks. Sounds good. I think its me straying off the topic actually - i am a forum novice...

 

[WillowJ]

Funny you say that. The one person i knew who it helped was in a post viral illness rather than ME.

One thing to keep in mind is that many people who have post-viral illnesses do get better within the first few years. It's always possible the treatment was a coincidence.

CBT, which also involves looking at negative thoughts, has been tested in clinical trials. Long-term benefit cannot be demonstrated. Short-term benefit can be shown but it in a serious disease in a large randomized trial, this will be very modest, of limited duration, and may have been derived not from actual gains but from various forms of bias (e.g. influencing the patient to respond differently even if there is little/no real difference, expectations of the raters) and various distortions of data. Or from normal fluctuations.

 

[WillowJ]

Of course, if a person has pervasive negative thinking, it would likely be useful to get some help for that. This will affect mental outlook and how one relates to oneself and one's surroundings/circumstances, including disease.

But it's important to not confuse mental outlook with an entirely different situation of a disease (any disease).

Though of course disease can produce mood change and can provoke situational depression. But that's still not central mechanism of ME/CFS.

 

[yabeeb]

Does anyone have an email to directly contact KDM or would he be unlikely to reply? I've written to the Himmunitas secretary a couple of times to find out how to go on the waiting list etc, but not got a response. She did send me the prices but I haVe since sent her a few more questions. Maybe they're just busy but poor communication is off-putting!

 

[Sushi]

Does anyone have an email to directly contact KDM or would he be unlikely to reply? I've written to the Himmunitas secretary a couple of times to find out how to go on the waiting list etc, but not got a response. She did send me the prices but I haVe since sent her a few more questions. Maybe they're just busy but poor communication is off-putting!

KDM would not answer an email about an appointment even if it was sent directly to him--he's just forward it to the secretary cause that is her job, not his, and he is extremely busy. I sent you a PM about communication tips with the clinic. Basically call them!

Also, feel free to start a chat with me.

If you are writing about an appointment in Reno, she may not know his schedule yet.

Best wishes,
Sushi

 

[yabeeb]

KDM would not answer an email about an appointment even if it was sent directly to him--he's just forward it to the secretary cause that is her job, not his, and he is extremely busy. I sent you a PM about communication tips with the clinic. Basically call them!

Also, feel free to start a chat with me.

If you are writing about an appointment in Reno, she may not know his schedule yet.

Best wishes,
Sushi

Thank you Sushi. This is really helpful