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Has anyone been completely cured of CFS?

Messages
60
in my opinion LP has all features of a cult.

the idea you can program your autonomous nervous system with words which only certain parts of the brain can process is nonsense. Our brain is far more complex than that. We can just re-program it with a few simple words or actions. it would be highly dangerous if you could actually re-program our brain that easily. What about vital functions? There is a reason that we can not control certain parts of our brain with our conscience.

Can i stand on paper shouting: "My heart does not beat, my heart does not beat"? Will it stop?

LP reminds me of faith healing or stage hypnosis and as always there is a simple down to earth explanation for observed "recoveries" that does not need to resort to mysticism.
No one believes that one needs to consciously tell ones heart to beat or ones lungs to breathe. But it is absolutely the case that one can train ones brain/psyche/whatever to not react inappropriately to external and internal stimuli and invoke the flight/fight response unnecessarily.
As for using the term "mysticism", there is nothing mystical about LP. The simple down to earth explanation you're searching for is that for some people LP works.
 
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10,157
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... . Either way I have a duty to visitors to this site to give a view opposed to the general consensus of this forum that LP is psychobabble hogwash, taught by charlatans and promoted but the prince of darkness himself, Phil Parker. This way at least they have an opportunity to see an alternative viewpoint, based on my experience. If members of this forum find this unpalatable that really is too bad.
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@Dster

The general consensus on this forum is indeed that 'LP is psychobabble hogwash'. I guess, using your own words, if you find this unpalatable that really is too bad. This thread is not about LP, it's supposed to be about whether or not anybody has been completely cured of ME/CFS. You answered the question from you own point of view and experience ages ago. The thread has been taken vastly off-topic and it's time to get back to answering the question which to me relates to remission versus complete cure.

Thank you.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
As for using the term "mysticism", there is nothing mystical about LP. The simple down to earth explanation you're searching for is that for some people LP works.
But it is very similar to faith heading in that it does little more than instruct the patient to 'believe' that they are well. By believing that you are well, apparently you are cured. In essence, that is the process, so it's no surprise that it invokes deep scepticism.

LP clearly helps some people who experience fatigue, but positive thinking cannot cure a biomedical illness. At least, there is no scientific evidence that it ever has done.

Edit: @Kina, we crossed posts. Please feel free to delete any of my posts if they are off-topic.
 
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10,157
@Bob -- it's okay as it was posted as the same time I did. I suppose if people still want to discuss this, we could split the thread but I don't know how much more can be said because it's just going back and forth with the same stuff.

Actually a new thread with a scientific discussion about why positive thinking can't cure a biomedical illness might be beneficial for those new to ME. Phoenix Rising and forums for AIDS, MS, Diabetes, Cancer etc wouldn't exist if positive thinking could cure biomedical illnesses. I am sure there are already many threads though that discuss this subject.
 

A.B.

Senior Member
Messages
3,780
No one believes that one needs to consciously tell ones heart to beat or ones lungs to breathe. But it is absolutely the case that one can train ones brain/psyche/whatever to not react inappropriately to external and internal stimuli and invoke the flight/fight response unnecessarily.
As for using the term "mysticism", there is nothing mystical about LP. The simple down to earth explanation you're searching for is that for some people LP works.

You still don't understand that ME/CFS is in many cases a physical illness with measurable abnormalities. Claiming that standing on a piece of paper, repeating "I don't do ME" will correct the underlying pathology is mysticism until proven otherwise.

There are occasional claims of recovery with these approaches, but very little to suggest that this is anything but a misdiagnosis, temporary remission interpreted as cure, or just false claims to promote a particular approach.

I'm serious. If it worked, the first person to demonstrate it would easily get the Nobel prize in medicine and revolutionize medicine. Has it happened? No, despite these claims going back to Freud's times. That alone should tell you something. We've been able to measure pathology objectively for a long time - why has nobody ever demonstrated that these mental approaches can indeed cure illness? Apologies if I simply don't believe a word of anything you say.
 
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lansbergen

Senior Member
Messages
2,512
No one believes that one needs to consciously tell ones heart to beat or ones lungs to breathe.

Well, when I was at my worst the automatic breating process did not work anymore. I had to do what you do not believe and claim nobody else does.
 

SOC

Senior Member
Messages
7,849
No one believes that one needs to consciously tell ones heart to beat or ones lungs to breathe. But it is absolutely the case that one can train ones brain/psyche/whatever to not react inappropriately to external and internal stimuli and invoke the flight/fight response unnecessarily.
So you don't believe that one can control automatic functions like the heart beat and breathing, but one can "absolutely" control other automatic functions of the body? What's the difference? Why can one control endocrine, nervous and immune systems just by thinking, but not the heart and lungs? Can I control my hormone levels by denying they are low? Can I increase low NK cell function or low CD8+ cell number by standing on a piece of paper denying they are low? If I have that much control of my body just by denying dysfunctions, why should I not be able to control something as simple as heart beat or breathing, which I can at least feel and hear?
The simple down to earth explanation you're searching for is that for some people LP works.
Yes, for people who have a psychological disorder (meaning a dysfunctional thought process, not a neurochemical disorder) which can be changed by changing the way one thinks about one's self and one's life. Denying symptoms only works if the symptoms don't actually exist.
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
There have been several posters on phoenix rising claimed to have been completely 'cured' of CFS/ME. Because their claim sounds so incredulous to those of us who have been suffering for decades (sometimes we think we are cured just to have symptoms return a year later), we have to pick them apart to verify the validity of their story, which I think is fair (as long as it is done in a civil manner).

So @Dster, please don't feel singled out- you or your LP. Nothing is more detrimental to us than wasted time, money energy and hope. As for the others (and I may not be familiar with them all), I have found their stories and/or methods questionable. They have more or less been debunked of their claim, though many found their info helpful. One can search phoenix rising for them.

There is also something else to consider: people might be cured but never look back to share with us how it happened. Perhaps they don't know how it happened or they don't want to revisit such a painful time in their life- they want to move on. I vow never to that. And I do believe I will be cured.

Then there are those who have become functional with remarkable diligence and research and share their protocols. This information I am so thankful for! So @Dster, I am always interested in things you find particularly helpful at calming your nervous system and retraining your brain to heal yourself. But if you claim to be cured, be prepared to back it up with details.
 

Mij

Messages
2,353
I have never read a message on this forum where someone claimed to be "cured" overnight by a treatment. This is is what @Dster is claiming. I wouldn't even waste my energy or intelligence on LP if it was offered for free.

"She is a colleague who I have worked closely with throughout her illness (extremely bad CFS/ME) for 5 years. Did the process and was cured, pretty much overnight"
 

A.B.

Senior Member
Messages
3,780
@Mij

Dster is also a single purpose account. All of his posts praise Lightning Process as miracle cure. Occasionally he repeats some bits of psychobabble such as CFS being an inappropriate stress response (nice euphemism for hysteria).
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@Dster

Thank you for your thoughtful and considered response to my (and others) questions here regarding your experience with LP.
I confess I remain skeptical but am glad for you that you have found it works.
In your last post (#280) I'm still a bit squeamish about the idea that our responses to internal and external stimuli are inappropriate.
And I do have one more question for you regarding the efficacy of LP. I know I would feel more comfortable with the narrative of your experience if You would confirm for us here that you are in no way receiving compensation for sharing your experience here.
I'm sure you can understand why that would be information we'd want to know.

And if you are willing to continue to engage with us it would be great to know how this treatment works out for you long term.
Would you say that all your symptoms are 100% resolved?
Can you do any activity you want without experiencing any repercussions now?
And do you need to continue to use the techniques you learned from LP or is that no longer necessary?

If you could just clarify for me, in post #275 you mentioned your symptoms one of which is PEF, I don't know what that is.
Perhaps you didn't give the full laundry list of symptoms but from what you did write I'd like to point out that while your experience of these would have been quite debilitating it doesn't match the literally dozens of symptoms present in typical ME presentation. While you have the larger more familiar symptoms, pain fatigue, cognitive fog you don't seem to have any of the other symptoms that differentiate ME from any number of other illnesses. Dr's sometimes use the 'loose' Fukuda or Oxford criteria for diagnosis that essentially put anyone with lingering fatigue into the same bucket diagnostic wise.

Generally with ME other typical symptoms would be: various sleep disruption issues--unrefreshing sleep, sleep interruption, problems falling asleep, --migraines, severe and frequent vascular headaches especially ones that mimic sinus pain, --fasciculations, all over the body and frequent, --sensory issues, sensitivity to sound, light, smell, touch, sensitivity to temperature is very common and so on,
--heart related issues that can be related to POTS many and varied, --bowel symptoms many and varied, --autoimmune type symptoms, reynauds phenomena, dry eyes or Sjogrens syndrome, and many others.

With the exception of bowel issues, very common in ME I have chosen examples that I am familiar with from personal experience.
We all want to get well. Really we do. I just don't see how LP can effectively cure all this? What am I missing?
 
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IreneF

Senior Member
Messages
1,552
Location
San Francisco
I was diagnosed with CFS about 10 years ago, but my symptoms went into remission, then returned after about two years. I've gotten progressively worse since about 2006, with a few bump-ups of feeling better that didn't last more than a few weeks. During my first remission I was working out, doing yoga, hiking, volunteering, and generally having a life. I thought I was over this disease.

Maybe if I had done something special at the right time I would have called that special thing a cure.
 

A.B.

Senior Member
Messages
3,780
Has anyone posted this link yet? Sorry if it's here already:
http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

Interesting. It really resembles a cult that thoroughly brainwashes people into denying reality:

There were four of us on the course. The morning of the first day was spent ‘proving’ mind over matter by showing us DVD’s interspersed with talks from the tutor, a stout woman in her late fifties, telling us about people who had being wrongly diagnosed with cancer and then died anyway.

She kept pointing to her large sofas and telling us stories about people who had lain there unable to move at the start of the course and were walking again by the third day and then back at work/school by the following Monday (the course was mid week).

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.
‘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.’
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.

The tutor said that if we tell people about the process if won’t work. That’s right, to talk about the process means it can’t work for you. She also told had told us no matter how she feels she tells everyone she ‘feels fabulous’.

The second day when I turned up there was three big posters saying, ‘DON’T TALK ABOUT HOW YOU ARE UNTIL THE SESSION STARTS’. I soon realised once it did start that is so the tutor can control everything.

By mid-afternoon I was slumped in my seat watching yet another video about how the brain makes us over-produce adrenalin and how The Process can stop it. But I had been doing the process and it hadn’t stopped it. All the tutor’s happy chat about even more people she had cured were starting to sound stale. I was not the only one who looked knackered. One of the blokes started asking questions about why he doesn’t feel what they say on the DVD.

At one point she left the room. It felt very naughty but I whispered to one of the woman sitting next to me ‘how are you, is this working for you?’. She was reluctant to answer, to say anything but that she was doing well would be to go against the process because that is a negative thought. It was pointless asking really.

Still I wanted it to work, but I was starting to worry about the fact that I was not only not feeling any better the effort of doing the course, not getting my normal rest was making me feel worse. But these were negative thoughts. I started to ruthlessly suppress them like I had been shown.

Also I realised when you fill in the form you have to say whether you question things, this is because they don’t want anyone on the course who does. They need to control everything. You are not allowed to talk about how you are because that is being negative.

I said one of my biggest problems was being exhausted but unable to sleep. So we did a visualisation that involved a pressure point on my hand and she said whenever I couldn’t sleep I could just rub that point. ‘There you are you are cured,’ she said so happily that I could see in her mind where no negative thoughts ever creep, I was. She was clearly thrilled with herself.
 

chipmunk1

Senior Member
Messages
765
I have never been there but that's what i would have expected. Actually it's even worse than i had expected.

There were four of us on the course. The morning of the first day was spent ‘proving’ mind over matter by showing us DVD’s interspersed with talks from the tutor, a stout woman in her late fifties, telling us about people who had being wrongly diagnosed with cancer and then died anyway.

They claim you can think yourself a tumor. Dster claimed this as well. The King's College also believes in the negative Personality/Cancer link.

hen 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.

The second day when I turned up there was three big posters saying, DON’T TALK ABOUT HOW YOU ARE UNTIL THE SESSION STARTS’. I soon realised once it did start that is so the tutor can control everything.

The tutor said that if we tell people about the process if won’t work. That’s right, to talk about the process means it can’t work for you. She also told had told us no matter how she feels she tells everyone she ‘feels fabulous

Tell everyone how great you feel regardless of what is happening.

At one point she left the room. It felt very naughty but I whispered to one of the woman sitting next to me ‘how are you, is this working for you?’. She was reluctant to answer, to say anything but that she was doing well would be to go against the process because that is a negative thought. It was pointless asking really

You are not allowed to say it doesn't work for me.

Also I realised when you fill in the form you have to say whether you question things, this is because they don’t want anyone on the course who does. They need to control everything. You are not allowed to talk about how you are because that is being negative

The followers are not allowed to question. Basically they brainwash people into reporting how great the program is and weed out anyone who doesn't. That helps recruit new followers.

http://en.wikipedia.org/wiki/Stage_hypnosis

According to experts such as Theodore X. Barber and André Muller Weitzenhoffer, stage hypnosis traditionally employs three fundamental strategies:

  1. Participant compliance. Participants on stage tend to be compliant because of the social pressure felt in the situation constructed on stage, before an expectant audience.
  2. Participant selection. Preliminary suggestion tests, such as asking the audience to clasp their hands and suggesting they cannot be separated, are usually used to select out the most suggestible and socially compliant subjects from the audience. By asking for volunteers to mount the stage, the performer also tends to select the most extraverted members of the audience.
  3. Deception of the audience. Stage hypnotists are performers who traditionally, but not always, employ a variety of "sleight of hand" strategies to mislead their audience for dramatic effect.

Nothing more than a brainwashing cult.
 
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chipmunk1

Senior Member
Messages
765
i have personally tried some "autosuggestive" techniques myself, (Emotional Freedom Technique) I did really change "something" in my mind quickly and i could fool myself for a few days that it worked and that i was better. Looking back i was still as sick as i had been. I am not sure to what extent this was a placebo effect, as it was a bit different from other placebos that i had experienced. I can not say that it was useful for anything. There were a lot of claims of recoveries. From my experience i don't believe it is good for anything. It may briefly change your thinking or get you out of certain states of mind but that's it. There are so many other things that can provide some mild relief for certain subjective symptoms. Nausea or migraine can get a bit better by having a cold shower or emerging yourself in televsion or an other activity. Sometimes just changing your position or walking around can provide some relief.

So we can influence certain symptoms by changing our perception or by changing focus but if there is something "wrong" it can get you only so far.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
So we did a visualisation that involved a pressure point on my hand and she said whenever I couldn’t sleep I could just rub that point. ‘There you are you are cured,’ she said so happily that I could see in her mind where no negative thoughts ever creep, I was. She was clearly thrilled with herself.
A Stepford therapist?
 

Sidereal

Senior Member
Messages
4,856
I've seen enough of these "I swear guyz I am totally cured!!" stories to believe that there is something to these brainwashing programmes like CBT, LP etc. other than people being deluded or lying. It is certainly possible to temporarily flood the brain with enough dopamine, norepinephrine and endorphin to produce good mood, optimism and suppress inflammation and pain, giving the illusion of a cure, while the underlying infectious/immune disease process continues unabated. (People who are severely ill of course don't have the requisite cellular energy to recruit these hormonal responses so these types of programmes do not work for them even temporarily.) But the basic mechanism is comprehensible. At the end of the day, Rx and street drugs for mood disorders work much in the same fashion. Natural processes like a manic episode work the same way. There is an old truism that mania cures everything. It really does until the patient works themselves into exhaustion, sometimes death, or crashes into depression because of course this level of fake activity cannot be sustained forever and the eventual crash comes on, hard.