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amazing recovery

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Wolfcub

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@sunshine44
I am personally so glad you have found some treatment that helps you. And it obviously helps others too !

Even though I ended up being a bit of a nay-sayer, you take no notice of us.

I believe there are many different manifestations and sub-sets of ME/CFS, and so many differences in us all.

I wish you well in pursuing anything at ALL that you find helps you. Good luck and all the very best :hug:
 

sunshine44

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Thanks for the support Wolfcub.

Yeah, my program has nothing to do with positive mental thinking. That is an incorrect generalization made about many of these programs. Which is kinda one of my points on this thread. There are so many generalizations made about neural retraining that they are positive mental attitudes or mindfulness, etc. and that is not the basis of the program. Most people talking about them have not tried them here.

You do a lot of training on pacing in my program so that PEM does not occur. It is part of it all.
 

sunshine44

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"A switch from death to life

I lay like that until something happened in the summer of 2008. My mom has said that what happened was like a switch from death to life in our home.

Naturally, my parents were constantly searching for solutions and somebody who could understand our situation. Around Christmas 2007, my dad Svein heard about several ME-patients that had been to England and recovered using the mental training program Lightning Process (LP). His first reaction was that it couldn’t be possible to get better using a mental method, but as I kept deteriorating, he thought that this might be the last thing they could try before I died. This started giving my parents a small hope, and luckily this was long before the Internet flowed over with discouraging and frightening stories about LP. Still, as I wasn’t up to travelling to England, it would have to wait."
 
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So then I went home and committed myself to my "zero tolerance" schedule.
LOL....it didn't work.
I woke up with a happy positive attitude. "I am having no more of this".
My first 3 mile walk ended up with pem. Well whaddaya know?
Periodically, I experience some moment wherein- This is not happening. And then- its happening.

I notice, quite often really, that I wake up, and I enjoy the luxury of just lying there. And nothing is hurting, nothing is dizzy, nauseated, woozy, or vague. I might even imagine- some things I might do today. A little errand. Launch a creative project.

Then I stand, I'm up, and after about 20 minutes- None of those ideas seem possible or feasible any longer.
 

percyval577

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That is Henrik Vogt's website. He promotes the view that ME/CFS is a psychologically caused condition, thinks ME/CFS should be treated psychologically, pours scorn on biomedical research into ME/CFS.

I am not denying that in some rare ME/CFS cases, psychological therapies that address locked-in mental stress might be helpful; but that does not mean ME/CFS is not a biological disease. It is. Whereas Vogt seem to dismiss biological approaches to ME/CFS on in his tweets. You can follow his Twitter feed here.
The Reverse Therapy article on MEpedia says:
Reverse therapy posits that non-specific illnesses originate from a breakdown between "Bodymind" (the limbic system or the "emotional" mind) and the "Critical mind" (the frontal lobes or the "judgemental" mind). This breakdown leads to uncleared emotions, stress, and a loss of fulfilment which in turn "leads to changes in signals from the Limbic system in the brain, leading to overwork of the hypothalamic-pituitary-adrenal axis (the HPA axis), to overload of the adrenal glands and alterations in the muscles, gut, circulation, immune system, sleep cycle and elsewhere."
I might be allowed to come up with my own guess, in comparison to this, and with an explanation of the possibility of psychological healing in rare cases. - Without letting aside physiological triggers.

I think ME/CFS is a kind of breakdown of basal ganglia synaptical structures. The BG should be able to influence quite some other structures like the HPA axis. (The association between fatique in general and BG are not new.)

Now, if there can happen a large change of involved cells in the BG, one may be on the way of healing. Such a can may be changing his/her biological sex - or if one has major genuin psychological distress, this may serve as well. If such a treatment were a big enough change for severe cases, seems to me questionable though. Noteworth might be the interpretation that such distress may physiological be in the BG a seperation of synaptical configurations, and when there is nothing to de-seperate, such a change will not be possible.
 
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Hi @percyval577 ....
So good to see you !!! You have an intriguing new avatar. I'll have to get used to that .... :eek::eek: :confused::confused: :xeyes::xeyes::xeyes:
If such a treatment were a big enough change for severe cases, seems to me questionable though. Noteworth might be the interpretation that such distress may physiological be in the BG a seperation of synaptical configurations, and when there is nothing to de-seperate, such a change will not be possible.
Interesting comment PV, as well as I could follow it. Basal ganglia are above my pay grade, but what you say makes sense :woot::woot: :thumbsup:.
 
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This is a hugely illuminating post and link, @Art Vandelay , and I thank you for it.

I can't recommend it highly enough to those of us who are desperate for cures, or improvement, or indeed, help of any kind with this sucking chest wound of an illness.

I believe that it's a "Must Read", which boils down generally to caveat emptor, and the imperative need to be fully informed before making a decision to commit to anything, whether a treatment protocol or a philosophy regarding the delineation or the nature of an illness, and therefore it's potential treatment and cure.

While I'm happy that it's been potentially helpful, at least anecdotally, to a fortunate few, it's the sad nature of this illness that what helps you may kill me, or at least potentially do unforeseeable damage, and vice-versa. Its subtlety and diversity of attack makes it a constantly moving target, difficult to define and hard to follow, let alone pin down.

Hope is a profoundly valuable commodity, and has kept more than a few of us staggering forward, knowing that there's something out there that can help us, if we just hang on long enough, hold our ground long enough, fight our corner hard enough.

It should be deployed with judiciousness and care.

EDITED .... FOR IDIOT TYPOS ...
 
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percyval577

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You have an intriguing new avatar. I'll have to get used to that .... :eek::eek: :confused::confused: :xeyes::xeyes::xeyes:
Actually the other avatar was intendend to represent such a one. I think some movement around (e.g.) could stuck in fatique, or even actively work against it´s own forward drive (I would think cfs), perhaps.


Maybe this one is a bit too shiny red? I rather liked the other one quite a lot, but I think to treat this structure like a lens-grinder (as Spinoza has been one). Maybe it´s not true, and it´s mainly the time and dose dependent influence of my low manganese diet (quite reasonably on this structure), now symptomatically helped by other influences presumably on the basal ganglia.

Interesting comment PV, as well as I could follow it. Basal ganglia are above my pay grade, but what you say makes sense :woot::woot: :thumbsup:.
Hopefully some psychatrists and psychologists would see such possibility too.


Many regards YY!
:cool:
 
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Wolfcub

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Periodically, I experience some moment wherein- This is not happening. And then- its happening.
I am always getting that. I can have days, even a week or more when it's gone. GONE. (I am so very very lucky and grateful.) I start thinking in a new way. Not necessarily pushing my body too hard, but living in the moment, illness -free; thinking the illness has gone now. It is in the past.
When it comes back -as it always manages to do -I'm always rather surprised.
 

sunshine44

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If ME was psychological (lightning process) then all one would need would be some stress reduction counseling and meditation. Been there, done that, didn't work.

not quite. My program makes it very clear ME is NOT psychological.

same.

been there, done that and those things alone did not work for me either.

That's my point through this. More people need to do research because there are huge misunderstandings about what these programs are and how they work. Prevalent thought on this thread is neural retraining= psychological. This is not true.
 
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That's my point through this. More people need to do research because there are huge misunderstandings about what these programs are and how they work. Prevalent thought on this thread is neural retraining= psychological. This is not true.
This seems to contradict the contents of your original article at the start of this thread, which specifically names the Lightning Process:


"Around Christmas 2007, my dad Svein heard about several ME-patients that had been to England and recovered using the mental training program Lightning Process (LP)."

The Lightning Process has been discussed unfavorably in a number of places, notable here:

Trial By Error: Joan McParland’s Lightning Process Experience.

Am reposting the link to this, posted earlier in this thread by @Art Vandelay:

http://www.virology.ws/2019/08/21/trial-by-error-joan-mcparlands-lightning-process-experience/

If you're posting about something else, you might want to clarify that.
 

sunshine44

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@YippeeKi YOW !!

You have made your point more than clear how you feel about it.

This thread is for people to not get closed down by current popular prevalent thinking that by trying one of these programs its all in their heads. Its NOT in our heads.


Do your own research friends :heart:
 
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This thread is for people to not get closed down by current popular prevalent thinking that by trying one of these programs its all in their heads. Its NOT in our heads.
I'd certainly be willing to enroll. I view all that as just another tool. I doubt I'd approach it as- Oh, then I will be cured. But it could be very helpful for improving how one thinks about- all this. Or to further enhance a more positive view of- all this.

While some people perhaps can maintain a positive outlook while dealing with this, its quite challenging, isn't it.
 
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